Wednesday, April 16, 2008
Tuesday, April 15, 2008
Contracting
Short of breath, I huffed my way down the carpeted, hospital hallway. My toes and ankles ached. My husband's flip flops adorned my feet, and the swollen skin on the top of my feet painfully stretched with each step. I felt quite awkward, but the stoic side of me forced a smile to mask my terror.
Charlie snapped my picture. I cringed on the inside. Why in the world of all that is good would I want to remember this day? My body was slowly failing me and my baby. I didn't want to capture the moments of my body's failure. Charlie made small talk with the nurse who was guiding me to my labor and delivery room. He seemed a bit nervous too.
Upon entering the room, the baby made a lumbering slow roll under my rib cage. I thought, "Aha, there you are. I've been waiting for you to move. You had me worried." It had been seven days of kick counts, and time spent on my left side. I was obsessed with the kick counting, and this was the most I had been upright in over a week. Wooziness was washing over me. My blood pressure was 160/110, and I no longer felt the urge to use the bathroom. All of the fluid in my body was slowly leaching out of my blood vessels and into me.
The swelling had reached my brain and was now affecting my vision. Straight lines now appeared wavy, and the light of day was blisteringly painful to my eyes.
Today was the day to be induced. The baby had stopped growing, my blood pressure was rising, and my kidneys were shutting down. The process of bringing my precious cargo into the world was about to commence. Today was the day that I would begin the process of delivering my baby too early. IV lines were placed. Bags of pitocin and magnesium sulfate were hung. I crawled into bed again, and found my left side. A long sigh emerged from within me.
When the mag hit my inside, I immediately felt hot. It was as if someone turned on a blast furnace from the inside. From there, the details all glide together into a commingled yet disjointed experience. The sequence of events eludes me anymore. That, in and of itself, brings immense disappointment within me. This was my first pregnancy. I want to remember what happened, but the disease of severe preeclampsia stole it from me.
The fuzzy memories I have usually center around the pain I was feeling with each pitocin induced contraction or how the wrinkled sheets underneath my body felt as if I was laying on match sticks.
Each year on April 15th, those fuzzy memories contract and contract and contract within me again. I clamor for the relaxing break between the emotional pain, but the contractions keep coming and coming and coming. I take cleansing, slow breaths in hope they will help. The routine of my day and the preparation for my first baby's birth date don't suppress the contracting. Nothing helps except for the end of the day.
Sleep lulls me now. Hopefully, it will be a sleep so deep and sound that I don't dream of those contractions again at least until next year.
Charlie snapped my picture. I cringed on the inside. Why in the world of all that is good would I want to remember this day? My body was slowly failing me and my baby. I didn't want to capture the moments of my body's failure. Charlie made small talk with the nurse who was guiding me to my labor and delivery room. He seemed a bit nervous too.
Upon entering the room, the baby made a lumbering slow roll under my rib cage. I thought, "Aha, there you are. I've been waiting for you to move. You had me worried." It had been seven days of kick counts, and time spent on my left side. I was obsessed with the kick counting, and this was the most I had been upright in over a week. Wooziness was washing over me. My blood pressure was 160/110, and I no longer felt the urge to use the bathroom. All of the fluid in my body was slowly leaching out of my blood vessels and into me.
The swelling had reached my brain and was now affecting my vision. Straight lines now appeared wavy, and the light of day was blisteringly painful to my eyes.
Today was the day to be induced. The baby had stopped growing, my blood pressure was rising, and my kidneys were shutting down. The process of bringing my precious cargo into the world was about to commence. Today was the day that I would begin the process of delivering my baby too early. IV lines were placed. Bags of pitocin and magnesium sulfate were hung. I crawled into bed again, and found my left side. A long sigh emerged from within me.
When the mag hit my inside, I immediately felt hot. It was as if someone turned on a blast furnace from the inside. From there, the details all glide together into a commingled yet disjointed experience. The sequence of events eludes me anymore. That, in and of itself, brings immense disappointment within me. This was my first pregnancy. I want to remember what happened, but the disease of severe preeclampsia stole it from me.
The fuzzy memories I have usually center around the pain I was feeling with each pitocin induced contraction or how the wrinkled sheets underneath my body felt as if I was laying on match sticks.
Each year on April 15th, those fuzzy memories contract and contract and contract within me again. I clamor for the relaxing break between the emotional pain, but the contractions keep coming and coming and coming. I take cleansing, slow breaths in hope they will help. The routine of my day and the preparation for my first baby's birth date don't suppress the contracting. Nothing helps except for the end of the day.
Sleep lulls me now. Hopefully, it will be a sleep so deep and sound that I don't dream of those contractions again at least until next year.
Tuesday, April 08, 2008
Boston Marathon Update
In January, Grace and Meghan were matched with Jen Davis, a runner in the Boston Marathon, through a patient match program in use at the American Liver Foundation. Jen is participating in the Run for Research, and we are incredibly honored that she runs in honor of Grace & Meghan, who live with Alpha-1 Antitrypsin Deficiency every day.
Please consider making a donation to Jen! She is doing such a great job running for anyone affecting by liver issues/diseases. Thank you Jen!
http://www.active.com/donate/liverteam08/alfJDavis
Here is her latest update:
The marathon is 2 weeks from today and the the hard training is now over. We had our 21 mile run last Saturday and I am thrilled to say that I got through it. I have been nursing a quad injury and had not run for 2 weeks prior. I ran a nice steady pace and was able to complete the whole run. Although I had trouble walking for the next 2 days. From now until the marathon we are in taper mode. Giving our muscles time to heal. My fundraising is going great. I am at $6,100 and plan on hitting my goal of $7,500. I am attaching a picture form our run last weekend. This was taken before we set off on the 21 miles. Of course that is why I have the smile on my face. The picture at the end isn't so pretty.
A big hello to Grace and Meghan and please let them know that their names will be written on my marathon shirt in huge letters! ~ Jen
Please consider making a donation to Jen! She is doing such a great job running for anyone affecting by liver issues/diseases. Thank you Jen!
http://www.active.com/donate/liverteam08/alfJDavis
Here is her latest update:
The marathon is 2 weeks from today and the the hard training is now over. We had our 21 mile run last Saturday and I am thrilled to say that I got through it. I have been nursing a quad injury and had not run for 2 weeks prior. I ran a nice steady pace and was able to complete the whole run. Although I had trouble walking for the next 2 days. From now until the marathon we are in taper mode. Giving our muscles time to heal. My fundraising is going great. I am at $6,100 and plan on hitting my goal of $7,500. I am attaching a picture form our run last weekend. This was taken before we set off on the 21 miles. Of course that is why I have the smile on my face. The picture at the end isn't so pretty.
A big hello to Grace and Meghan and please let them know that their names will be written on my marathon shirt in huge letters! ~ Jen
Friday, April 04, 2008
Sensations
Nearing dawn, I awoke with the sensation that my chest felt heavy. The weight of my upper half felt as if it was pressing down from the inside onto the muscles of my upper back. It was odd, but strangely relaxing. The usually knotted muscles within me relaxed in response.
Was this sensation a remnant of that space between awake and asleep?
A virus had wrapped itself inside the cells of my being. The words "sick and tired" paled in comparison to how I felt. Dark circles grew larger under my eyes. My chest inhaled and exhaled rapidly over and over. My heaving breaths seemed to further extinguish my energy.
I shifted in the space of my bed, and pain rushed through the nerves of my lower neck, reached an intersection, and flowed up both sides of my face to the pinnacles of my temples. The ibuprofen had worn off over night, and I needed another dose. I didn't like relying on the pain reliever, but the alternative reminded me to ginger myself.
A tickling sensation grew near my vocal cords. I swallowed to tame the tickle. It didn't work. Coughing, that seemed to originate deep inside my lungs, sputtered from my lips. Over and over, I coughed. My oxygen supply was diminished, which encouraged my lungs to inhale deeply. I choked on the air, and sputtered some more.
The pounding of my heart startled me, and I sat up in response. I gasped for air again, and reminded myself to try a shallow breath. That helped, but it was followed by a fast 1-2-3 sequence of breaths. Suddenly a scratchy sensation welled up within my throat.
Choking coughs emerged, and my vocal cords throbbed in pain. My heart raced in response, and the din of my sputtering faded away. I sighed and grabbed my forehead. A chill cascaded within me, and I wondered about my temperature.
Was it 102.5 again?
My chest rose and fell over and over again in rapid fire sequence. My friends and family with Alpha-1 Antitrypsin Deficiency ran through my thoughts.
Is this how they feel?
Is this how their breaths feel?
Is this how Grace and Meghan will feel in the future?
Choking coughs thrust forth again, and throbbing within my throat induced a swallow. Tears pooled within my eye lids, and my thoughts failed to calm my fever induced anxiety.
A virus was ravaging my insides, and I reminded myself to rest again. I gulped two more pills, and poured the water into the desert of my mouth and throat. I no longer had the energy to sit up. The mattress enveloped me with warmth, and my eyes closed under their own weight. Charlie rolled over and slid his sleep heavy hand onto my hip. Unfortunately, the muscles surrounding my hip knotted in response. More pain flowed.
A tear slid down my cheek toward my ear, self pity tried to emerge, but was quieted by the coughing within me.
A new sensation quelled. Itchiness inside the lower portions of my lungs insulted my sanity. I rubbed the middle of my back near the itching but found it futile. The itch was inside me, nowhere near anything I could scratch.
Fortunately, sleep found me again. Rest was what I needed. Rest would help with the battle against this virus.
Rest.
Was this sensation a remnant of that space between awake and asleep?
A virus had wrapped itself inside the cells of my being. The words "sick and tired" paled in comparison to how I felt. Dark circles grew larger under my eyes. My chest inhaled and exhaled rapidly over and over. My heaving breaths seemed to further extinguish my energy.
I shifted in the space of my bed, and pain rushed through the nerves of my lower neck, reached an intersection, and flowed up both sides of my face to the pinnacles of my temples. The ibuprofen had worn off over night, and I needed another dose. I didn't like relying on the pain reliever, but the alternative reminded me to ginger myself.
A tickling sensation grew near my vocal cords. I swallowed to tame the tickle. It didn't work. Coughing, that seemed to originate deep inside my lungs, sputtered from my lips. Over and over, I coughed. My oxygen supply was diminished, which encouraged my lungs to inhale deeply. I choked on the air, and sputtered some more.
The pounding of my heart startled me, and I sat up in response. I gasped for air again, and reminded myself to try a shallow breath. That helped, but it was followed by a fast 1-2-3 sequence of breaths. Suddenly a scratchy sensation welled up within my throat.
Choking coughs emerged, and my vocal cords throbbed in pain. My heart raced in response, and the din of my sputtering faded away. I sighed and grabbed my forehead. A chill cascaded within me, and I wondered about my temperature.
Was it 102.5 again?
My chest rose and fell over and over again in rapid fire sequence. My friends and family with Alpha-1 Antitrypsin Deficiency ran through my thoughts.
Is this how they feel?
Is this how their breaths feel?
Is this how Grace and Meghan will feel in the future?
Choking coughs thrust forth again, and throbbing within my throat induced a swallow. Tears pooled within my eye lids, and my thoughts failed to calm my fever induced anxiety.
A virus was ravaging my insides, and I reminded myself to rest again. I gulped two more pills, and poured the water into the desert of my mouth and throat. I no longer had the energy to sit up. The mattress enveloped me with warmth, and my eyes closed under their own weight. Charlie rolled over and slid his sleep heavy hand onto my hip. Unfortunately, the muscles surrounding my hip knotted in response. More pain flowed.
A tear slid down my cheek toward my ear, self pity tried to emerge, but was quieted by the coughing within me.
A new sensation quelled. Itchiness inside the lower portions of my lungs insulted my sanity. I rubbed the middle of my back near the itching but found it futile. The itch was inside me, nowhere near anything I could scratch.
Fortunately, sleep found me again. Rest was what I needed. Rest would help with the battle against this virus.
Rest.
Monday, March 31, 2008
Sick
Wow, I haven't had this much luxurious time to myself lately, but may I just say that being sick has dampened my enthusiasm?
My voice has left me, and I'm sporting a 102.5 fever. Some virus has attacked every muscle and joint in my body. I feel like I've been placed on the rack. Sigh, but this too shall pass. I'm laying low in an attempt to encourage my immune system to fend this nasty virus off.
Grace, the ever astute observer, said this on the way to school this morning, "Mom, you can't yell today."
The cherry on top of the day is that we are experiencing severe thunderstorms today, but spring is beginning to spring. Yay!
My voice has left me, and I'm sporting a 102.5 fever. Some virus has attacked every muscle and joint in my body. I feel like I've been placed on the rack. Sigh, but this too shall pass. I'm laying low in an attempt to encourage my immune system to fend this nasty virus off.
Grace, the ever astute observer, said this on the way to school this morning, "Mom, you can't yell today."
The cherry on top of the day is that we are experiencing severe thunderstorms today, but spring is beginning to spring. Yay!
Sunday, March 30, 2008
Kafaleen
The fabric of the hot pink and white polka dot ruffles bunched up in the palms of my hands. Pale yellow curls pushed through the top of her dress. One curl wound itself around a pink button so I looped my finger into her hair to finagle it free. Meghan shimmied the rest of her party dress down toward her knees, and I closed two buttons near her neck.
"Please sit down Meghan, and I'll help you with your tights."
She spun around, grabbed her child size chair, and took a seat. I rolled one leg of the tights inside my hand so I could slide it onto her leg. As it always happens, Meghan flexed her foot and the progression of the tights came to a halt.
"Meghan, please point your toes honey." She complied, but as I finished pulling up her tights, she broke free from my hands.
She gleefully exclaimed, "Tada! I'm weady for Kafaleen's (Kathleen's) birfday party."
"Hold on Meghan. You need to put your shoes on."
"Oh, okay Mommy. I'm gonna put my pretty black shoes on. Kafaleen likes my special black shoes." Pure joy and anticipation exuded from her. I found it hard not to smile. Her excitement was palpable, and today would be a milestone for her. She had never been invited to a friend's birthday party before, and today was the day. For the last two weeks, Meghan had asked me if it was Kafaleen's birfday party.
She had trouble containing her excitement and I had to remind her to keep her voice down. Gracie helped by temporarily distracting her with two helium filled balloons. They took turns jumping toward the ceiling to grab the red and green balloons as Charlie finished wrapping Kafaleen's gift.
I pulled my own shirt down over my head, and pulled my hair out from under the shirt. Meghan and Grace's muffled grunts and shrieks as they leaped toward their balloons filled my ears. I slipped my brown loafers on my feet, and glanced in the mirror to make sure I was sufficiently put together.
Charlie's voice exclaimed, "Okay girls. It is time to go. We'll get our coats on while Mommy finishes up."
"Yaaaaaaaaaaaaaay! It's time ta go. It's time to go ta Kafaleen's party."
Both girls sprinted down the stairs toward our front hall closet. I was close behind them, and followed them down our sidewalk toward the garage. We were headed to Gymboree at the mall. None of us had ever been there before so we all didn't know what to expect, but I did inform Meghan that she'd get to run and play during the party.
Meghan shrieked, "Yaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaay!"
We arrived at the mall, and walked toward Gymboree. It was a typical March day here in Wisconsin. The sky was overcast, and the snow was finally beginning to melt away. Unfortunately, the residue of the snow coated the sidewalk with mud and gunk. We navigated around the muddy puddles. Meghan's pink and white polka dots bounced as she trotted to keep up with my adult sized stride. She firmly gripped my hand as I pulled the handle on the glass door.
Upon entering, Meghan's face lit up. I could tell it was better than she ever thought it would be. Kathleen said, "Meghan's here. Meghan's here."
A large smile erupted across Meghan's face, and she darted toward Kathleen and her mother inside the play area. Kathleen grabbed Meghan's hand, and they ran off to play together.
Charlie said while laughing, "She's ready to play."
Grace's eyes panned the room, and a pout emerged on her face. I could tell she wanted to play too so I reminded her that we'd be going shopping for some new pajamas. Grace sighed deeply as we walked toward the door.
I glanced behind me and said, "Bye Meghan!"
She lifted her head, found the location of my voice, and blew me a kiss. This mother's heart melted a bit more as I internally acknowledged that my last baby was no longer a baby.
"Please sit down Meghan, and I'll help you with your tights."
She spun around, grabbed her child size chair, and took a seat. I rolled one leg of the tights inside my hand so I could slide it onto her leg. As it always happens, Meghan flexed her foot and the progression of the tights came to a halt.
"Meghan, please point your toes honey." She complied, but as I finished pulling up her tights, she broke free from my hands.
She gleefully exclaimed, "Tada! I'm weady for Kafaleen's (Kathleen's) birfday party."
"Hold on Meghan. You need to put your shoes on."
"Oh, okay Mommy. I'm gonna put my pretty black shoes on. Kafaleen likes my special black shoes." Pure joy and anticipation exuded from her. I found it hard not to smile. Her excitement was palpable, and today would be a milestone for her. She had never been invited to a friend's birthday party before, and today was the day. For the last two weeks, Meghan had asked me if it was Kafaleen's birfday party.
She had trouble containing her excitement and I had to remind her to keep her voice down. Gracie helped by temporarily distracting her with two helium filled balloons. They took turns jumping toward the ceiling to grab the red and green balloons as Charlie finished wrapping Kafaleen's gift.
I pulled my own shirt down over my head, and pulled my hair out from under the shirt. Meghan and Grace's muffled grunts and shrieks as they leaped toward their balloons filled my ears. I slipped my brown loafers on my feet, and glanced in the mirror to make sure I was sufficiently put together.
Charlie's voice exclaimed, "Okay girls. It is time to go. We'll get our coats on while Mommy finishes up."
"Yaaaaaaaaaaaaaay! It's time ta go. It's time to go ta Kafaleen's party."
Both girls sprinted down the stairs toward our front hall closet. I was close behind them, and followed them down our sidewalk toward the garage. We were headed to Gymboree at the mall. None of us had ever been there before so we all didn't know what to expect, but I did inform Meghan that she'd get to run and play during the party.
Meghan shrieked, "Yaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaay!"
We arrived at the mall, and walked toward Gymboree. It was a typical March day here in Wisconsin. The sky was overcast, and the snow was finally beginning to melt away. Unfortunately, the residue of the snow coated the sidewalk with mud and gunk. We navigated around the muddy puddles. Meghan's pink and white polka dots bounced as she trotted to keep up with my adult sized stride. She firmly gripped my hand as I pulled the handle on the glass door.
Upon entering, Meghan's face lit up. I could tell it was better than she ever thought it would be. Kathleen said, "Meghan's here. Meghan's here."
A large smile erupted across Meghan's face, and she darted toward Kathleen and her mother inside the play area. Kathleen grabbed Meghan's hand, and they ran off to play together.
Charlie said while laughing, "She's ready to play."
Grace's eyes panned the room, and a pout emerged on her face. I could tell she wanted to play too so I reminded her that we'd be going shopping for some new pajamas. Grace sighed deeply as we walked toward the door.
I glanced behind me and said, "Bye Meghan!"
She lifted her head, found the location of my voice, and blew me a kiss. This mother's heart melted a bit more as I internally acknowledged that my last baby was no longer a baby.
Friday, March 21, 2008
Wednesday, March 19, 2008
Indelible
There are some people in our lives with whom we are bonded indelibly. My grandma Eve is one of those people for me. As far back as my memories can take me, love wells up inside of me when I think of her. I am her first grandchild, and she often cared for me while I was growing up. There are perks to being the first grandchild. The first of which is that I've had almost 35 years of time with her.
Today, we celebrated her 89th birthday. While I love acknowledging today, it also stirs up fears of when I won't be able to celebrate her birthday. In any case, I have a hard time putting into words the amount of love I have for her. It often feels like love on borrowed time, though.
Tonight, I called her. It was the first time I've had to call her in the hospital. As she picked up the phone, I heard her tell someone in the room that it was probably her granddaughter calling. This made me smile immediately, and that love for her welled up inside.
Part of me is still a lanky legged little girl who is longing to dart up to her with my arms wide open, waiting for my hug and kiss. After all, who loves you like a grandmother? Who loves you so unconditionally without expectations? Only a grandparent who has given up on the parental guilt loves you that way. Only a grandparent glows at the opportunity to take part in the fun associated with a small child and doesn't care much about how that child will turn out.
I've learned so much from her, but again, tonight I am learning more from her.
"Hello."
"Hi Gram. Happy Birthday!"
"Hi honey. How are you?"
I wanted to answer with how I really feel today, but I'm sure she already knows how I feel. I'm terrified this will be my last conversation with her. I'm missing her incredibly, and I know she feels the same way.
"I'm okay. I don't feel well, and my heart is having palpitations. I don't want to talk about that though. How are the girls and Charlie?"
I filled her in and gently asked some questions about how the doctors/nurses thought she was doing.
"Well honey, the nurse is here to help me get ready for bed. I'd better let you go. I love you, and am so proud of you and your family. You're such a great mother. Tell the girls I loved their card."
"I love you too Grams. Happy Birthday, and I hope they let you go home in time for Easter."
"Yes, I'd really like to take part in Holy week, but as my priest says, "You can't always get your way. You get what you need."
Indeed.
Today, we celebrated her 89th birthday. While I love acknowledging today, it also stirs up fears of when I won't be able to celebrate her birthday. In any case, I have a hard time putting into words the amount of love I have for her. It often feels like love on borrowed time, though.
Tonight, I called her. It was the first time I've had to call her in the hospital. As she picked up the phone, I heard her tell someone in the room that it was probably her granddaughter calling. This made me smile immediately, and that love for her welled up inside.
Part of me is still a lanky legged little girl who is longing to dart up to her with my arms wide open, waiting for my hug and kiss. After all, who loves you like a grandmother? Who loves you so unconditionally without expectations? Only a grandparent who has given up on the parental guilt loves you that way. Only a grandparent glows at the opportunity to take part in the fun associated with a small child and doesn't care much about how that child will turn out.
I've learned so much from her, but again, tonight I am learning more from her.
"Hello."
"Hi Gram. Happy Birthday!"
"Hi honey. How are you?"
I wanted to answer with how I really feel today, but I'm sure she already knows how I feel. I'm terrified this will be my last conversation with her. I'm missing her incredibly, and I know she feels the same way.
"I'm okay. I don't feel well, and my heart is having palpitations. I don't want to talk about that though. How are the girls and Charlie?"
I filled her in and gently asked some questions about how the doctors/nurses thought she was doing.
"Well honey, the nurse is here to help me get ready for bed. I'd better let you go. I love you, and am so proud of you and your family. You're such a great mother. Tell the girls I loved their card."
"I love you too Grams. Happy Birthday, and I hope they let you go home in time for Easter."
"Yes, I'd really like to take part in Holy week, but as my priest says, "You can't always get your way. You get what you need."
Indeed.
Monday, March 17, 2008
Our "Golden" Anniversary
Seventeen years ago, we had our first date. I'm amazed how time is relative.
The smell of my dorm room that day lingers omnipresent. I carefully chose my clothes, and made sure that green was part of my outfit. It was Saint Patrick's Day, and I was attending a free band concert with you at Humanities Hall. I was so "in like" with you at the time that I could think of nothing else.
I hemmed and hawed around what I might say or how I might say something to you. Nervous was just the tip of the ice berg, but I hoped it wouldn't show on my face or in my demeanor. You held my hand and smiled as we walked down the street. I hoped my hand wasn't sweaty. The music was pretty, and I shifted in my chair a bit as you sat next to me. I nervously laughed at certain points, and that at the end of the evening, we had our first, very akward kiss.
It was the beginning of us. We were immature, attempting to find out who we were as adults, yet still often acting like children. I was terrified to tell you that I "liked" you, and you were unsure as well.
Who we were then is not who we are now, but those memories help create who we are now.
It simply amazes me what we have gone through since that day 17 years ago. You and I have grown up and into adults with responsibilities. Along the way, there has been heart break, but also an unabiding love. We've always been a sort of contradiction, but in the same sense, we fit together perfectly. We laugh. We fight. We cry. We share. We annoy. We love. We are one.
We are one entity trying to make our way through life and address the challenges and celebrate successess together.
Image Courtesy: www.microsoft.com
Seven years ago, you met me at the front of the church. You smiled, and I melted on the inside. That day, we were finally joined in marriage. Our priest joked that the statute of limitations on dating had finally run out. Even then, you and I were both scared yet still very much in love. We committed even though the committment had been born long before that. We created two beautiful daughters together. We created a life as a family. We learned that Alpha-1 was a common gene shared between us. We learned that Alpha-1 would not pull us apart nor our children. We survived preeclampsia, temporary blindness, prematurity, and mononucleosis.
We still survive. We still love. We are one. We are united. We love.
For all of that, I thank you Charlie.
Happy Anniversary!
I love you always,
Jen
The smell of my dorm room that day lingers omnipresent. I carefully chose my clothes, and made sure that green was part of my outfit. It was Saint Patrick's Day, and I was attending a free band concert with you at Humanities Hall. I was so "in like" with you at the time that I could think of nothing else.
I hemmed and hawed around what I might say or how I might say something to you. Nervous was just the tip of the ice berg, but I hoped it wouldn't show on my face or in my demeanor. You held my hand and smiled as we walked down the street. I hoped my hand wasn't sweaty. The music was pretty, and I shifted in my chair a bit as you sat next to me. I nervously laughed at certain points, and that at the end of the evening, we had our first, very akward kiss.
It was the beginning of us. We were immature, attempting to find out who we were as adults, yet still often acting like children. I was terrified to tell you that I "liked" you, and you were unsure as well.
Who we were then is not who we are now, but those memories help create who we are now.
It simply amazes me what we have gone through since that day 17 years ago. You and I have grown up and into adults with responsibilities. Along the way, there has been heart break, but also an unabiding love. We've always been a sort of contradiction, but in the same sense, we fit together perfectly. We laugh. We fight. We cry. We share. We annoy. We love. We are one.
We are one entity trying to make our way through life and address the challenges and celebrate successess together.
Image Courtesy: www.microsoft.com
Seven years ago, you met me at the front of the church. You smiled, and I melted on the inside. That day, we were finally joined in marriage. Our priest joked that the statute of limitations on dating had finally run out. Even then, you and I were both scared yet still very much in love. We committed even though the committment had been born long before that. We created two beautiful daughters together. We created a life as a family. We learned that Alpha-1 was a common gene shared between us. We learned that Alpha-1 would not pull us apart nor our children. We survived preeclampsia, temporary blindness, prematurity, and mononucleosis.
We still survive. We still love. We are one. We are united. We love.
For all of that, I thank you Charlie.
Happy Anniversary!
I love you always,
Jen
Saturday, March 15, 2008
Cracked
Early last week, Grace approached me in our kitchen. She wore a red juice colored tatoo smile on her mouth. It was the kind that resulted because she tips the cup too quickly toward her mouth and the juice stains her upper lip in a joker-esque fashion. Upon looking closer into her eyes, I noticed she appeared concerned, and then she said, "My hands hurt Mama. They have scrapes on them."
"Let me see them."
Grace lifted both of her hands toward my mid-section and grimaced. As I inspected the skin on the back of both her hands, I had a hard time not making a "face" too. Her skin actually appeared sunburned throughout, but I knew better than that as we are in the vestiges of winter still. Across her knuckles were nearly 100 small cracks with startling similarity to paper cuts.
"Oh geez Gracie," I exhaled. "Have you been using lotion after you wash your hands?"
"Sometimes, Mama."
"You've got to use every time Gracie."
"I can't use it at school though."
"We can send some along with you in your backpack."
"Oh. Okay Mama."
"Let's go get some lotion now."
Gracie frowned, sighed knowingly, and asked a question to which she already knew the answer, "Will it hurt Mommy?"
"It may sting a bit, but we need to help your skin heal."
I didn't think much of that episode of cracked hands. I have very sensitive hands too.
***********************************************
A few days later, Grace began a familiar episode. These episodes come and go as most childhood phases do, but always give me a creeping sensation inside since they only seem to afflict Gracie. Meghan does not have an intense need to control most things around her.
Grace began kept telling us she had to use the bathroom. At first, I wondered if she had a bladder infection or something to that effect. There were little signs of something like an infection. Her proclaimations kept coming every 10 minutes or so, and she was able to hold it all night with no issues. Her hands weren't getting any better, though.
It was a mystery to me why she thought she had to go the bathroom so much. I even consulted a few friends to inquire if their children had gone through anything similiar.
Nope. None.
*******************************************
Here is an example of multitudes of interactions we've had in the last week:
"Mom, I have to pee sooooooo sooooooo bad!"
"Sorry honey. It hasn't even been an hour yet. You need to wait."
"But Mom!"
I cut her off, "No Grace. You certainly do not need to go to the bathroom yet."
*******************************************
On Friday, the girls and Charlie had a day off of school. While I was at work, I called Charlie. He and the girls were visiting our good friend, Tante, and her new baby, Hailey.
"Hi...How is Grace today? Is she asking to go to the bathroom a lot?"
Charlie responded, "All the time. I caught her going into the bathroom. She flushed the toilet without going, and just wants to wash her hands."
The realization flashed over me, but I asked the question anyway. "You mean like obsessively wanting to wash her hands?"
"Yes."
"Oh God. What should we do?"
"Jen, it is probably just a phase. We just need to help her correct her behavior."
"I know Charlie, but this reminds me of last year at Josh's wedding. It just worries me. I was a very stressed out kid when I was little, and I don't want her to feel like I did. I was so stressed that I scratched holes in my scalp in fourth grade." I flashed on a memory of my mom asking me what happened to my head as she was brushing my hair.
"This is probably just a phase Jen. Yes, this runs in your family, but this is probably just another phase."
"It still worries me though. I'd better get back to work now."
"All right. We'll talk to you later. Will you be home at regular time?"
"Yes. Bye."
*******************************************
When I got home later that day, I found a quiet time to ask Grace a few questions.
"Gracie, Daddy tells me that you want to wash your hands a lot. Why do you do that?"
"So I don't have germs on me."
That answer sounded like a standard repetition of the "right" answer in kindergarten, so I decided to take my questions in a sensory processing disorder direction. "Do you like how the water feels on your hands Gracie?"
"Yes. I like cold water on my hands."
"Is that because they sting right now?"
"Uh huh."
"Grace, would you rather have a ice pack for your hands? It would feel cold, but we would need to wrap it in a towel so it wouldn't freeze your skin."
"Okay Mommy."
"Are you worried about germs on your hands Gracie?"
"No." I flashed back to the lie I told my mom when she confronted me about the wounds on my scalp, but I reassured myself since I was older than Gracie when I lied to my mom.
"Are you sure Gracie?"
"Uh huh."
"Why do you wash you hands so much?"
"So I don't have germs, Mommy."
*******************************************
All of this is worrisome to me. Charlie feels behavior redirection should help her. It is hard for me not to reflect on my own childhood intense need to feel things. I didn't want to put holes into my scalp, but it felt like their were bumps on my head. I wanted the bumps gone. I scratched the bumps, which caused scabs, which led to me scratching the scabs off. It was a vicious cycle, and a hard habit to break then. Does Grace feel a strange sensation on her hands? Or is this simple compulsion?
Or am I just reading more into the situation? I have no idea, but I am glad to report that her hands are now on the road to healing. We've kept the bathroom visits to a minimum, which resulted in less hand washing and less chapped hands.
"Let me see them."
Grace lifted both of her hands toward my mid-section and grimaced. As I inspected the skin on the back of both her hands, I had a hard time not making a "face" too. Her skin actually appeared sunburned throughout, but I knew better than that as we are in the vestiges of winter still. Across her knuckles were nearly 100 small cracks with startling similarity to paper cuts.
"Oh geez Gracie," I exhaled. "Have you been using lotion after you wash your hands?"
"Sometimes, Mama."
"You've got to use every time Gracie."
"I can't use it at school though."
"We can send some along with you in your backpack."
"Oh. Okay Mama."
"Let's go get some lotion now."
Gracie frowned, sighed knowingly, and asked a question to which she already knew the answer, "Will it hurt Mommy?"
"It may sting a bit, but we need to help your skin heal."
I didn't think much of that episode of cracked hands. I have very sensitive hands too.
***********************************************
A few days later, Grace began a familiar episode. These episodes come and go as most childhood phases do, but always give me a creeping sensation inside since they only seem to afflict Gracie. Meghan does not have an intense need to control most things around her.
Grace began kept telling us she had to use the bathroom. At first, I wondered if she had a bladder infection or something to that effect. There were little signs of something like an infection. Her proclaimations kept coming every 10 minutes or so, and she was able to hold it all night with no issues. Her hands weren't getting any better, though.
It was a mystery to me why she thought she had to go the bathroom so much. I even consulted a few friends to inquire if their children had gone through anything similiar.
Nope. None.
*******************************************
Here is an example of multitudes of interactions we've had in the last week:
"Mom, I have to pee sooooooo sooooooo bad!"
"Sorry honey. It hasn't even been an hour yet. You need to wait."
"But Mom!"
I cut her off, "No Grace. You certainly do not need to go to the bathroom yet."
*******************************************
On Friday, the girls and Charlie had a day off of school. While I was at work, I called Charlie. He and the girls were visiting our good friend, Tante, and her new baby, Hailey.
"Hi...How is Grace today? Is she asking to go to the bathroom a lot?"
Charlie responded, "All the time. I caught her going into the bathroom. She flushed the toilet without going, and just wants to wash her hands."
The realization flashed over me, but I asked the question anyway. "You mean like obsessively wanting to wash her hands?"
"Yes."
"Oh God. What should we do?"
"Jen, it is probably just a phase. We just need to help her correct her behavior."
"I know Charlie, but this reminds me of last year at Josh's wedding. It just worries me. I was a very stressed out kid when I was little, and I don't want her to feel like I did. I was so stressed that I scratched holes in my scalp in fourth grade." I flashed on a memory of my mom asking me what happened to my head as she was brushing my hair.
"This is probably just a phase Jen. Yes, this runs in your family, but this is probably just another phase."
"It still worries me though. I'd better get back to work now."
"All right. We'll talk to you later. Will you be home at regular time?"
"Yes. Bye."
*******************************************
When I got home later that day, I found a quiet time to ask Grace a few questions.
"Gracie, Daddy tells me that you want to wash your hands a lot. Why do you do that?"
"So I don't have germs on me."
That answer sounded like a standard repetition of the "right" answer in kindergarten, so I decided to take my questions in a sensory processing disorder direction. "Do you like how the water feels on your hands Gracie?"
"Yes. I like cold water on my hands."
"Is that because they sting right now?"
"Uh huh."
"Grace, would you rather have a ice pack for your hands? It would feel cold, but we would need to wrap it in a towel so it wouldn't freeze your skin."
"Okay Mommy."
"Are you worried about germs on your hands Gracie?"
"No." I flashed back to the lie I told my mom when she confronted me about the wounds on my scalp, but I reassured myself since I was older than Gracie when I lied to my mom.
"Are you sure Gracie?"
"Uh huh."
"Why do you wash you hands so much?"
"So I don't have germs, Mommy."
*******************************************
All of this is worrisome to me. Charlie feels behavior redirection should help her. It is hard for me not to reflect on my own childhood intense need to feel things. I didn't want to put holes into my scalp, but it felt like their were bumps on my head. I wanted the bumps gone. I scratched the bumps, which caused scabs, which led to me scratching the scabs off. It was a vicious cycle, and a hard habit to break then. Does Grace feel a strange sensation on her hands? Or is this simple compulsion?
Or am I just reading more into the situation? I have no idea, but I am glad to report that her hands are now on the road to healing. We've kept the bathroom visits to a minimum, which resulted in less hand washing and less chapped hands.
Tuesday, March 11, 2008
My Child Left Behind
Last week, I blogged about Enrichment. Here is an update.
I understand how the principal arrived at his decision to remove the music and gym teacher at our school. Do I like it?
No.
Am I irritated?
Yes.
What can I do?
I can write to the school board, my congressmen/women, my senators, and tell anyone I know. I can contact the media. I can advocate. I can let my voice be heard. I've been delaying a post about this in hopes that I might find more eloquent words which aren't bathed in anger. Sorry, it hasn't happened. Bear with me. The mama bear in me is raging, and won't be calmed just yet.
There is very little we can do to fix this for next year, though. My daughters will attend a school that has no art, gym, or music teachers in fall 2008. How sad is that? How incredibly disappointing is that?
School children are being cheated by programs like school choice, which takes public money and moves it into the private sector. Federal government promised money is drying up for education. No child left behind...my arse! We've somehow magically got money to pay for a war, but at what cost? Can't we help other countries and take care of ourselves too? Instead we mandate teaching to a test. What does that solve? That is not learning. That assumes we have incredibly dumb children in the US. Honestly, I really understand homeschooling now, and think those parents are incredibly brave and forward thinking.
Our school's budget was cut by $270,000 for next year. Thankfully, our school had some money in reserve so that makes the school short by $180,000 this year. That is still 2 full time teaching positions...at least that is what the school system charges our school for those positions. I'm quite certain our teachers don't make $90 thousand a year, though.
What will happen during next year's budget proceedings?
Lots of schools have it worse. I know that. Charlie's school has 98% of its student population below the Federal poverty line. His school has to spend money on safety attendants and feeding the children. I understand clearly that my daughters' school is blessed when compared to his, but why punish schools that are succeeding? I don't see the logic in making great schools mediocre. How does mediocrity help anyone succeed? How do classrooms of 35 children solve anything?
It is clear to me that there is lethargy toward funding education, but how is our society going to succeed if we don't pay for children's education? If we privatize education, where does that leave special education? Private schools do not have to adhere to regulations surrounding providing special education.
I was a special education student. I overcame my challenges. I'm a contributing member of society, and I know I'll find a way to provide enrichment programs for Grace and Meghan. Our family is blessed to have the money to afford it, but what do the parents at Charlie's school do? Really!
Education is crucial to having a society in the United States that will succeed. Otherwise, we may as well just start building prisons now because they'll be full-up soon.
Yours in frustration,
The Mama Bear
I understand how the principal arrived at his decision to remove the music and gym teacher at our school. Do I like it?
No.
Am I irritated?
Yes.
What can I do?
I can write to the school board, my congressmen/women, my senators, and tell anyone I know. I can contact the media. I can advocate. I can let my voice be heard. I've been delaying a post about this in hopes that I might find more eloquent words which aren't bathed in anger. Sorry, it hasn't happened. Bear with me. The mama bear in me is raging, and won't be calmed just yet.
There is very little we can do to fix this for next year, though. My daughters will attend a school that has no art, gym, or music teachers in fall 2008. How sad is that? How incredibly disappointing is that?
School children are being cheated by programs like school choice, which takes public money and moves it into the private sector. Federal government promised money is drying up for education. No child left behind...my arse! We've somehow magically got money to pay for a war, but at what cost? Can't we help other countries and take care of ourselves too? Instead we mandate teaching to a test. What does that solve? That is not learning. That assumes we have incredibly dumb children in the US. Honestly, I really understand homeschooling now, and think those parents are incredibly brave and forward thinking.
Our school's budget was cut by $270,000 for next year. Thankfully, our school had some money in reserve so that makes the school short by $180,000 this year. That is still 2 full time teaching positions...at least that is what the school system charges our school for those positions. I'm quite certain our teachers don't make $90 thousand a year, though.
What will happen during next year's budget proceedings?
Lots of schools have it worse. I know that. Charlie's school has 98% of its student population below the Federal poverty line. His school has to spend money on safety attendants and feeding the children. I understand clearly that my daughters' school is blessed when compared to his, but why punish schools that are succeeding? I don't see the logic in making great schools mediocre. How does mediocrity help anyone succeed? How do classrooms of 35 children solve anything?
It is clear to me that there is lethargy toward funding education, but how is our society going to succeed if we don't pay for children's education? If we privatize education, where does that leave special education? Private schools do not have to adhere to regulations surrounding providing special education.
I was a special education student. I overcame my challenges. I'm a contributing member of society, and I know I'll find a way to provide enrichment programs for Grace and Meghan. Our family is blessed to have the money to afford it, but what do the parents at Charlie's school do? Really!
Education is crucial to having a society in the United States that will succeed. Otherwise, we may as well just start building prisons now because they'll be full-up soon.
Yours in frustration,
The Mama Bear
Saturday, March 08, 2008
When We Go to Heaven
How do you speak to your children about death? Really, how do you? Please comment.
I find this subject extremely difficult, yet it has been unfortunately quite common place lately. I'm unprepared and often searching for simple words or terms to use in the depths of my brain.
Death is familiar to my children. We talk about it so much that it runs a close second to "What did you do at school today?"
I remember the exact day it started. It was April 14, 2004. On that day, my beloved cat, Eeyore, died. From that day forward, Grace began to ask me questions about death and heaven. Eventually Meghan added her own spin on death inquisitiveness.
What I say usually entails this:
"When we go to heaven, our body stays here on Earth, and the part of ourselves that thinks and feels and knows who we are goes up to heaven. It is the part of us that knows our name is Gracie or Meghan. That part of us is called our soul. People go to heaven, hopefully, when they are very old. Sometimes, children and young adults go to heaven too. When people die, we are very sad because we won't be able to see them again. At least, we won't see them again until we die and go up to heaven.
Heaven is a wonderful place. It is a place where no one hurts or feels sad or is lonely. Heaven is the most wonderful thing ever. God gave it us so we can feel special. One really great thing about heaven is that all of our family and friends who died before us will be there. When I go up to heaven, I'll be able to see both of my grandpas.
We are very sad when someone dies, but we also know that we'll see them again when we get to heaven."
Recently, our best friend, Tante, lost her daughter, Mary Carol. Next, my sister-in-law's father passed away. Then, Charlie's friend from college lost his 1-year old to neuroblastoma. Last week, the girls attended two funerals. There has been so much loss for people we know and love, and Grace and Meghan, in typical fashion, have been inundating me with questions.
Where did Mary Carol go?
Why didn't Tante have a funeral?
Is Aunt Patti sad her dad had to go to heaven?
Why is he cut-in-half? (Clue: One half of the casket was open, and the other was not.)
Why is Patti's daddy sleeping?
Why does the baby look so sad?
Why did God want the baby with him?
Why are there so many people here?
Why do we have to wait in line again?
Why are there so many pictures?
Why do I need to be quiet?
Are they going to put his bones in the ground?
Will he see his mommy and daddy again in heaven?
Will somebody get his liver cuz he doesn't need it anymore? (Yes, we've explained organ donation out of need. We know several people who've had lung and liver transplants.
Perhaps I've shared too much? Perhaps I haven't?
What I do know is that my children don't seem to be afraid of death. I wish I wasn't so afraid of their deaths, whenever that may be.
Their Alpha-1 is morbidly real for me...a little too real. My old friend, denial, has to be around here somewhere. Come out! Come out wherever you are!
I find this subject extremely difficult, yet it has been unfortunately quite common place lately. I'm unprepared and often searching for simple words or terms to use in the depths of my brain.
Death is familiar to my children. We talk about it so much that it runs a close second to "What did you do at school today?"
I remember the exact day it started. It was April 14, 2004. On that day, my beloved cat, Eeyore, died. From that day forward, Grace began to ask me questions about death and heaven. Eventually Meghan added her own spin on death inquisitiveness.
What I say usually entails this:
"When we go to heaven, our body stays here on Earth, and the part of ourselves that thinks and feels and knows who we are goes up to heaven. It is the part of us that knows our name is Gracie or Meghan. That part of us is called our soul. People go to heaven, hopefully, when they are very old. Sometimes, children and young adults go to heaven too. When people die, we are very sad because we won't be able to see them again. At least, we won't see them again until we die and go up to heaven.
Heaven is a wonderful place. It is a place where no one hurts or feels sad or is lonely. Heaven is the most wonderful thing ever. God gave it us so we can feel special. One really great thing about heaven is that all of our family and friends who died before us will be there. When I go up to heaven, I'll be able to see both of my grandpas.
We are very sad when someone dies, but we also know that we'll see them again when we get to heaven."
Recently, our best friend, Tante, lost her daughter, Mary Carol. Next, my sister-in-law's father passed away. Then, Charlie's friend from college lost his 1-year old to neuroblastoma. Last week, the girls attended two funerals. There has been so much loss for people we know and love, and Grace and Meghan, in typical fashion, have been inundating me with questions.
Where did Mary Carol go?
Why didn't Tante have a funeral?
Is Aunt Patti sad her dad had to go to heaven?
Why is he cut-in-half? (Clue: One half of the casket was open, and the other was not.)
Why is Patti's daddy sleeping?
Why does the baby look so sad?
Why did God want the baby with him?
Why are there so many people here?
Why do we have to wait in line again?
Why are there so many pictures?
Why do I need to be quiet?
Are they going to put his bones in the ground?
Will he see his mommy and daddy again in heaven?
Will somebody get his liver cuz he doesn't need it anymore? (Yes, we've explained organ donation out of need. We know several people who've had lung and liver transplants.
Perhaps I've shared too much? Perhaps I haven't?
What I do know is that my children don't seem to be afraid of death. I wish I wasn't so afraid of their deaths, whenever that may be.
Their Alpha-1 is morbidly real for me...a little too real. My old friend, denial, has to be around here somewhere. Come out! Come out wherever you are!
Saturday, March 01, 2008
Enrichment
In our family, we often laugh and say that our children have acquired the “B” family music gene. Music was also incredibly important in my mother’s family. In all seriousness, Kesa is incredibly gifted with musical talent. She plays clarinet, saxophone, flute, and a little piano. She is a self-proclaimed “band geek.”
From the time Grace began to hum and sing along to her favorite children’s music, she was always on key. To me this was amazing since most toddlers like to sing but need a little help finding the right key in which to sing. Meghan has followed suit, and as I’ve said before, she sings and hums nearly 60% of her days.
I wholeheartedly believe that all of our girls have a natural inclination toward musical talent, and Grace and Meghan often imagine which instruments they would like to learn as they grow up. Music enriches their lives and plays to their souls.
**********
In our family, we also laugh that our children, except for Kesa, are not naturally inclined towards being physically active. Grace’s name is actually a misnomer. She does not have natural grace. She falls into the clumsy, awkward category of children. Grace also suffers from sensory issues, and we’ve found that spinning, jumping, and swinging are calming for her. In the warm months, Grace’s daily routine is to swing. She pumps her legs with glee to go higher and higher. Gracie needs activity as part of her sensory diet. It tames Grace’s internal disorganization, and reminds her body that it does have balance and grace.
Meghan likely would have been a naturally agile girl, but her micropreemie beginning set up an unnatural low tone, low strength situation. When she was a baby and unable to move very well, it became apparent that her spirit was trapped inside her body. The look in her eyes revealed the situation. She yearned to get free of the confines of her weakened state. For a long time, she received physical therapy to strengthen her body, especially her left side. She succeeded in breaking free for the most part, but her spry spirit is often tamed by her weaker physical body. Meghan needs activity to free her spirit.
**********
So why am I speaking to our childrens’ musical and physical abilities?
Last week, we found out that their school has decided to eliminate both the music and physical education teachers for the next school year. I don’t understand the decision, and as I’ve documented above, this will directly affect my daughters’ lives. A PTA meeting is scheduled for Tuesday, and Charlie and I will be there.
From the time Grace began to hum and sing along to her favorite children’s music, she was always on key. To me this was amazing since most toddlers like to sing but need a little help finding the right key in which to sing. Meghan has followed suit, and as I’ve said before, she sings and hums nearly 60% of her days.
I wholeheartedly believe that all of our girls have a natural inclination toward musical talent, and Grace and Meghan often imagine which instruments they would like to learn as they grow up. Music enriches their lives and plays to their souls.
**********
In our family, we also laugh that our children, except for Kesa, are not naturally inclined towards being physically active. Grace’s name is actually a misnomer. She does not have natural grace. She falls into the clumsy, awkward category of children. Grace also suffers from sensory issues, and we’ve found that spinning, jumping, and swinging are calming for her. In the warm months, Grace’s daily routine is to swing. She pumps her legs with glee to go higher and higher. Gracie needs activity as part of her sensory diet. It tames Grace’s internal disorganization, and reminds her body that it does have balance and grace.
Meghan likely would have been a naturally agile girl, but her micropreemie beginning set up an unnatural low tone, low strength situation. When she was a baby and unable to move very well, it became apparent that her spirit was trapped inside her body. The look in her eyes revealed the situation. She yearned to get free of the confines of her weakened state. For a long time, she received physical therapy to strengthen her body, especially her left side. She succeeded in breaking free for the most part, but her spry spirit is often tamed by her weaker physical body. Meghan needs activity to free her spirit.
**********
So why am I speaking to our childrens’ musical and physical abilities?
Last week, we found out that their school has decided to eliminate both the music and physical education teachers for the next school year. I don’t understand the decision, and as I’ve documented above, this will directly affect my daughters’ lives. A PTA meeting is scheduled for Tuesday, and Charlie and I will be there.
Sunday, February 24, 2008
Pulse
As a parent, I often feel like I've got the "pulse" of each of my children pretty much down to an exact science. Gracie is my serious, often tentative child. She is genuinely concerned about a lot things which impact her life, and it often shows on her face. She has a worried expression most of her days, and we need to coax her into trying new things. Don't misunderstand me though. She loves to play, imagine, and get down to the business of being an almost 6 year old. I just have to remind her to have fun. Her innate nature is to try to act like an adult.
Meghan is my mischevious, carefree child. Generally, she could care less what other children or adults think of her. She has an innate sense of self-esteem, and I find myself reminding her to be empathetic toward others. Her favorite thing to do right now is find ways to annoy her big sister, Gracie. Like Grace, Meggie loves to play and imagine, and most days, she is singing nearly 60% of her awake hours.
It isn't often that one of them truly surprises me. I don't know if that is this mommy feeling lulled into a false sense of truly knowing my children or something else. To put it plainly, I've always been able to figure out what each one of them was thinking. Sometimes Grace wonders out loud, "How did Mommy know I was going to do that?" Honestly, I don't know how I know her so well. Call it a mother's intuition. Call it intelligent guessing. Call it being empathetic. Call it lucky.
I don't know what exactly to call it except that yesterday, Grace truly surprised me. It was an amazing sign of progress for her, which had me "beaming" from the inside out.
As I stated earlier, Grace is tentative about most things. She has always been tentative about learning how to swim. (I was tentative about her being exposed to the swimming pool chemical, chlorine, but that should be another blog post related to her Alpha-1.) Her comfort zone lies in her ability to be able to hold onto either me or Charlie while swiming. When she first began swimming lessons at 18 months old, we had to coax Grace into participating in the classes, which were filled with "torturous" singing of songs like motor boat or the wheels on the boat go round and round. I remember her wailing her way through several classes. Finally, she stopped the tantrums, but she would only cling onto the side of the pool with a death grip. Eventually, she switched her death grip from the side of the pool onto me or Charlie. Then, she eventually relaxed a bit, but was always sure to be holding onto Charlie or me with a firm grip.
Next came coaxing Grace into putting her mouth into the water to blow some simple bubbles. One day, we finally encouraged her to "talk to the fish." She finally told the fish that she didn't like any vegetables. It was amazing progress for Gracie, but it was painstaking, careful, plodding Grace. Eventually, she would put her face and nose into the water, but her eyes were always slammed shut during that process. Her first reaction was always to wipe the water from her eyes, and blink, blink, blink the water out too.
As she grew larger, her ability to coordinate her arms, legs, and breathing for a front crawl came together. It wasn't what I'd call graceful. Pun intended. :) It was Grace swimming, but I had one hand on her tummy always there to give her a subtle helping hand. A couple of times, I removed my hand to see that she could go a few strokes without my assistance. Yay! She would always notice my hand missing, and usually would sink knowing I let go. I knew it was about her confidence. We all knew she could swim by herself, but Grace didn't know that about herself. We'd have to wait for Grace to figure that out.
Just last week, Grace was able to swim on her back across the width of the pool. She liked swimming that way since her face wasn't in the water. She also did her requisite bobs during class, which was the greatest amount of progress for Grace in a long time. Charlie came home singing her praises. We were all proud of her.
Yesterday, Grace finally figured it all out. To use a driving metaphor, she rushed into first gear, flew into second, skipped right past third, and went directly to fourth. I suppose you want to know what she did, right?
This time, she swam 1/2 way across the pool using her front crawl with face in the water, arms scooping, and legs kicking in a coordinated effort. In addition, she dove for rings off the bottom of the pool. This meant that Gracie not only put her face into the water, but she opened her eyes under water to see the ring.
I was amazed, and she kept repeating, "This so fun, Mommy. I want to do it again."
Call me a surprised, beaming with pride mama!
Meghan is my mischevious, carefree child. Generally, she could care less what other children or adults think of her. She has an innate sense of self-esteem, and I find myself reminding her to be empathetic toward others. Her favorite thing to do right now is find ways to annoy her big sister, Gracie. Like Grace, Meggie loves to play and imagine, and most days, she is singing nearly 60% of her awake hours.
It isn't often that one of them truly surprises me. I don't know if that is this mommy feeling lulled into a false sense of truly knowing my children or something else. To put it plainly, I've always been able to figure out what each one of them was thinking. Sometimes Grace wonders out loud, "How did Mommy know I was going to do that?" Honestly, I don't know how I know her so well. Call it a mother's intuition. Call it intelligent guessing. Call it being empathetic. Call it lucky.
I don't know what exactly to call it except that yesterday, Grace truly surprised me. It was an amazing sign of progress for her, which had me "beaming" from the inside out.
As I stated earlier, Grace is tentative about most things. She has always been tentative about learning how to swim. (I was tentative about her being exposed to the swimming pool chemical, chlorine, but that should be another blog post related to her Alpha-1.) Her comfort zone lies in her ability to be able to hold onto either me or Charlie while swiming. When she first began swimming lessons at 18 months old, we had to coax Grace into participating in the classes, which were filled with "torturous" singing of songs like motor boat or the wheels on the boat go round and round. I remember her wailing her way through several classes. Finally, she stopped the tantrums, but she would only cling onto the side of the pool with a death grip. Eventually, she switched her death grip from the side of the pool onto me or Charlie. Then, she eventually relaxed a bit, but was always sure to be holding onto Charlie or me with a firm grip.
Next came coaxing Grace into putting her mouth into the water to blow some simple bubbles. One day, we finally encouraged her to "talk to the fish." She finally told the fish that she didn't like any vegetables. It was amazing progress for Gracie, but it was painstaking, careful, plodding Grace. Eventually, she would put her face and nose into the water, but her eyes were always slammed shut during that process. Her first reaction was always to wipe the water from her eyes, and blink, blink, blink the water out too.
As she grew larger, her ability to coordinate her arms, legs, and breathing for a front crawl came together. It wasn't what I'd call graceful. Pun intended. :) It was Grace swimming, but I had one hand on her tummy always there to give her a subtle helping hand. A couple of times, I removed my hand to see that she could go a few strokes without my assistance. Yay! She would always notice my hand missing, and usually would sink knowing I let go. I knew it was about her confidence. We all knew she could swim by herself, but Grace didn't know that about herself. We'd have to wait for Grace to figure that out.
Just last week, Grace was able to swim on her back across the width of the pool. She liked swimming that way since her face wasn't in the water. She also did her requisite bobs during class, which was the greatest amount of progress for Grace in a long time. Charlie came home singing her praises. We were all proud of her.
Yesterday, Grace finally figured it all out. To use a driving metaphor, she rushed into first gear, flew into second, skipped right past third, and went directly to fourth. I suppose you want to know what she did, right?
This time, she swam 1/2 way across the pool using her front crawl with face in the water, arms scooping, and legs kicking in a coordinated effort. In addition, she dove for rings off the bottom of the pool. This meant that Gracie not only put her face into the water, but she opened her eyes under water to see the ring.
I was amazed, and she kept repeating, "This so fun, Mommy. I want to do it again."
Call me a surprised, beaming with pride mama!
Tuesday, February 19, 2008
Pay It Forward
I'll never forget the moments when Grace's pediatric gastroenterologist sat Charlie and I down in some rocking chairs in the NICU and said some words I couldn't quite comprehend. She had diagnosed Grace with Alpha-1 Antitrypsin Deficiency.
According to the Alpha-1 Foundation, the birth rate of Alpha-1 is approximately 1 in every 2500 births. This is actually similar to the birth rates for cystic fibrosis, and most readers of this blog likely recognize that condition. It is also passed in a similar genetic fashion to CF. A mother and a father much each pass the Alpha-1 gene to a child in order for a child to obtain Alpha-1 Antitrypsin Deficiency. CF is passed in the same way with a different gene. So, why is it that Alpha-1 is so underrecognized?
I admit that I had never heard of it before Grace was diagnosed. Although since then, I've heard it mentioned on the television shows ER and House. I'm sure as most people watched those shows they let the words Alpha-1 Antitrypsin Deficiency just skirt into their present and then quickly evaporate out of their memories. Rightfully so, I suppose. Alpha-1 Antitrypsin Deficiency doesn't exactly roll off the tongue with ease.
"Alpha-1 what? How do you spell that? Can you say that again?" were some of the questions I uttered in my state of shock. I even wondered what the Alpha-1 protein looked like. Image courtesy of Wikipedia:
So if you take that birth rate for Alpha-1 and apply that to the US population, that means there are about 100,000 people with Alpha-1 in the United States. Less than 10% of those Alphas are diagnosed.
So where did all the Alphas go? Well, a lot of those Alphas are living their lives without the knowledge that they are slowly losing lung or liver function. They don't know that they should be protecting themselves from cigarette smoke, maintaining a healthy body weight for good liver health, and paying attention to air quality.
Most Alphas don't know that they are Alphas.
Some of these Alphas have symptoms already. They chalk it up to being out of shape. They might be diagnosed with COPD, a catch-all term for pulmonary issues. They are accused of being smokers or alcoholics. They are alone without critical information to help them. They don't know that there is a treatment for Alpha-1. There are intravenously administered products which replace the Alpha-1 protein in the bloodstream. This medicine doesn't correct lung damage already sustained, but it can maintain current lung function. This medicine is not approved in children though, so my girls can't have it yet. :(
So where am I going with this rambling? My children are diagnosed, and I view that as a blessing. I can help them to assimilate Alpha-1 into their lives. It will not come as a shock to them that they have Alpha-1. They already call themselves Alphas, and while they may not completely understand that, I can help them to understand as they grow. Therein lies my power in this situation. I do have some control. I can help them. I may not save their lives from Alpha-1, but I can remind them everyday that they have lives and to enjoy each moment like it is their last.
Not only can I help my girls, I can help others in the Alpha-1 community. From time-to-time, I meet parents of newly diagnosed children who have Alpha-1. Most of the time, I meet these parents online. There stories aren't the same as mine, but they are familiar. Their stories display a combination of fear, guilt, and anxiety for the future. Often, all that they hear/see is the worst possible outcome. I can help them see the shades of gray that make up Alpha-1.
Each individual with Alpha-1 follows his/her own path on the journey of Alpha-1. There is no way to predict how or when Alpha-1 will run its course. As a proud "mama bear" to two beauties with Alpha-1, it is often difficult for me to acknowledge the true reality of what that means. Denial is my friend, and I'm sure I'm not the only one who uses it as a coping mechanism.
I only hope that by sharing my thoughts here in cyberspace that I can help others dealing with Alpha-1 in their lives...whether that is yourself, your loved ones, or your acquaintances. I know it helps me to have my blog as a release...a release of stress, of worry, and of fears.
It helps me to pay it forward.
According to the Alpha-1 Foundation, the birth rate of Alpha-1 is approximately 1 in every 2500 births. This is actually similar to the birth rates for cystic fibrosis, and most readers of this blog likely recognize that condition. It is also passed in a similar genetic fashion to CF. A mother and a father much each pass the Alpha-1 gene to a child in order for a child to obtain Alpha-1 Antitrypsin Deficiency. CF is passed in the same way with a different gene. So, why is it that Alpha-1 is so underrecognized?
I admit that I had never heard of it before Grace was diagnosed. Although since then, I've heard it mentioned on the television shows ER and House. I'm sure as most people watched those shows they let the words Alpha-1 Antitrypsin Deficiency just skirt into their present and then quickly evaporate out of their memories. Rightfully so, I suppose. Alpha-1 Antitrypsin Deficiency doesn't exactly roll off the tongue with ease.
"Alpha-1 what? How do you spell that? Can you say that again?" were some of the questions I uttered in my state of shock. I even wondered what the Alpha-1 protein looked like. Image courtesy of Wikipedia:
So if you take that birth rate for Alpha-1 and apply that to the US population, that means there are about 100,000 people with Alpha-1 in the United States. Less than 10% of those Alphas are diagnosed.
So where did all the Alphas go? Well, a lot of those Alphas are living their lives without the knowledge that they are slowly losing lung or liver function. They don't know that they should be protecting themselves from cigarette smoke, maintaining a healthy body weight for good liver health, and paying attention to air quality.
Most Alphas don't know that they are Alphas.
Some of these Alphas have symptoms already. They chalk it up to being out of shape. They might be diagnosed with COPD, a catch-all term for pulmonary issues. They are accused of being smokers or alcoholics. They are alone without critical information to help them. They don't know that there is a treatment for Alpha-1. There are intravenously administered products which replace the Alpha-1 protein in the bloodstream. This medicine doesn't correct lung damage already sustained, but it can maintain current lung function. This medicine is not approved in children though, so my girls can't have it yet. :(
So where am I going with this rambling? My children are diagnosed, and I view that as a blessing. I can help them to assimilate Alpha-1 into their lives. It will not come as a shock to them that they have Alpha-1. They already call themselves Alphas, and while they may not completely understand that, I can help them to understand as they grow. Therein lies my power in this situation. I do have some control. I can help them. I may not save their lives from Alpha-1, but I can remind them everyday that they have lives and to enjoy each moment like it is their last.
Not only can I help my girls, I can help others in the Alpha-1 community. From time-to-time, I meet parents of newly diagnosed children who have Alpha-1. Most of the time, I meet these parents online. There stories aren't the same as mine, but they are familiar. Their stories display a combination of fear, guilt, and anxiety for the future. Often, all that they hear/see is the worst possible outcome. I can help them see the shades of gray that make up Alpha-1.
Each individual with Alpha-1 follows his/her own path on the journey of Alpha-1. There is no way to predict how or when Alpha-1 will run its course. As a proud "mama bear" to two beauties with Alpha-1, it is often difficult for me to acknowledge the true reality of what that means. Denial is my friend, and I'm sure I'm not the only one who uses it as a coping mechanism.
I only hope that by sharing my thoughts here in cyberspace that I can help others dealing with Alpha-1 in their lives...whether that is yourself, your loved ones, or your acquaintances. I know it helps me to have my blog as a release...a release of stress, of worry, and of fears.
It helps me to pay it forward.
Sunday, February 17, 2008
Happy Birthday Timmy
My baby brother, Tim, is 23 today.
Gosh, I remember when he was 5, and visited me in my college dorm while dragging around his security blanket. Where has the time gone?
I hope you had a great day Timmy. I love you.
Jen
Gosh, I remember when he was 5, and visited me in my college dorm while dragging around his security blanket. Where has the time gone?
I hope you had a great day Timmy. I love you.
Jen
Long Overdue
Michelle at In the Life of a Child awarded me with the Daily Dose award. :) The award is supposed to be passed along to “All the blogs that you’ve discovered that you can’t possibly live without. They make you laugh, cry, think and feel connected every time you read a post. They give you a thrill as you see them loading into your browser and you get an equally satisfying thrill when you see that they have commented on your blog.” Michelle, you have become a true cyberfriend, and I thank you for stumbling upon my blog. I applaud and appreciate your eloquence and ability to remind me that life changing medical issues still qualify as a life. Michelle also granted me with these awards, and each one made me feel special. I've never received a blog award until Michelle gave me several. They were uplifting, and I hope they are for others as well.
So since the point of a blog award is to pass it along, here I go:
These ladies are my preeclampsia survivor friends, and I think I would have gone a little crazy had I not had my PE survivor community to hold me up in dark days. You ladies deserve all of these awards. Please pass them on!
Denise at A Woman With Hobbit Feet
Amy at Living With Grace
Mama at Mama Really Needs a Nap
Christie at The Mis-Adventures of Captain Poopy
Sabrina at PE Mommy
Lori at Blue Eyed Bunch
Cara at The Stevens Family
4onfaith at Belphia
Kate at Mother Words: Mothers Who Write
There is one more person I want to acknowledge here, but she is not a blogger. I visit with my long lost twin, jen_miracles, on the Preeclampsia Survivors discussion forum just about everyday. I "met" her shortly after Meghan was born. Like me, she developed severe preeclampsia twice, and earlier the second time around. This is a rare way to develop it, and she and I have that in common among some other things. Jen, if you had a blog, you'd get these awards too. :)
Saturday, February 16, 2008
Unexpected
As I drove the van to the median and took a left turn onto Capitol Drive, I was suddenly behind quite a line of cars. It was morning drive time, and I had just dropped Grace off at school. I was on my way to work, and it was like most of my mornings. The only difference of late was that my city had been blasted by one snow storm after another. The medians and curbs along the boulevard had mounds of snow stacked up about four to five feet high. Driving down most streets is like driving down in a tunnel. It is difficult to see what is on the other side of the mounds.
I was only on Capitol drive for about ten blocks and then I took my usual right turn onto 92nd Street. Ahead of my mini-van was an emerald green sedan, an American car of some kind. The green car was in the right lane, and I moved over into the left lane.
At this point, our cars were now neck and neck driving down 92nd Street. Most of the snow had melted on the pavement, but there were some spots where the salt hadn't completed its job yet. The snow was mounded up on the curbs and medians in the same fashion as all the other streets. The snowy landscape was intensely bright, and my sun visor was helping to shield my eyes from the bright sun. Slushy puddles had formed since some of the snow had started to melt. I could hear whooshing sounds underneath the tires of my van, and I was about to approach an area of the road where the snow had been reduced to a grayish version of sandy slush. I slowed as I approached the gray mess. I'm glad I did because what happened next is one of those life events that takes your breath away. It was one of those moments where time seems to slow, and get very sureal.
Suddenly, the green sedan veered left into my lane.
How to recount this is difficult since it is not what I would characterize as logical or sequential. It is rather my disjointed sensory experience than anything else.
The green car was suddenly diagonally placed into my lane directly in front of my mini-van. He had moved over without using his turn signal. His car was in such close proximity to mine that it reminded me of two cars intimately parallel parked on the side of a road, except we weren't parked. We were in full motion at about 35 miles per hour. I heard myself scream in a "aaahhhhh ahhhhhhh ahhhhhh" way.
On instinct, my right foot slammed on the brake. My arms were tensed up on the steering wheel. I lifted my right hand off the steering wheel, and pounded on the horn so that it was one long continuous blast. I felt my van's wheels sliding on the snow under the tires. The van's sensors were flashing at me in a ferocious yellow blinking way as if to say, "Slow down stupid. You are sliding. What the heck do you think you are doing?"
The antilock braking system suddenly engaged in an attempt to stop the van. The stop/start thuding under my right foot was getting rapidly faster in an almost machine gun firing sequence. The green car kept coming and coming and coming. My work bag, which was on the passenger seat, suddenly flew forward into the floor of the van.
At this point, I knew I was going to T-bone the green car. I just knew it. I could feel it in my bones. I knew it was a fact. My thoughts kept repeating themselves, "I'm going to hit this idiot. I'm going to hit him. I'm going to hit him. Oh my God, I'm going to hit him. Aaaaahhhhhh! Aaaaaahhhhhhhh!"
Then, my brakes finally engaged. The brakes instantly stopped the wheels from spinning, and brought my van to a sudden stop. It felt like the body of the van lurched forward on the chassis. My hand slipped off the horn. My head and neck were flung forward toward the steering wheel, but my seat belt was locked in place to keep me where I should have been. I didn't hit the green car, but we were "this close." If I had to guess, I'd guess we were 1/2 inch away from each other. Too close for comfort.
I instantly wondered if my wheels had suddenly found a dry spot on the pavement, and I also thanked God for the inventor of anti-lock brakes, traction control, and electronic stability control. I never give these things a second thought usually, but there I was trying to picture some incredible MENSA-smart engineer. Who was this person?
Then my thoughts returned to the green car. It had darted over into a turning bay in the median, and kept on going. It finally sped into the parking lot of a Health Care center.
Outloud, I said, "You'd better have an emergency, buddy!"
I noticed in my rear view mirror that traffic was approaching my mini-van from behind, so I lifted my foot off the brake and got out of their way. As I drove down the left-lane past the health care center, I was glaring at the green car. I just had to know what the heck happened. I had to know why he had nearly caused a serious collision.
Guess what?
He was on his cell phone. There was no emergency.
Ugh.
I will never understand.
Tears welled up in my eyes. I felt my body begin to shudder from the adrenaline released. Expletives erupted from my mouth. He had nearly injured or killed me, and all because his phone call was "too important" to pay attention to driving. Ugh.
Something intervened that morning. I don't know if it was fate or my guardian angel or luck or simply the miracle of mini-van engineering. I'm here to write this recounting, and I thank God for my life.
The green car keeps popping up in my dreams, in my day dreams, and especially in random moments. Perhaps it is a bit post-traumatic? Perhaps it is that I'm still mad at what nearly happened. I don't know for sure. I just know that I'm thanking God for Gabriel Voisin, the inventor of anti-lock brakes for aircraft. His invention led to the invention of ABS for automobiles.
Technology helped to keep me safe that day, but I'm not ruling out any guardian angels or higher power. He certainly works in mysterious ways.
My muscles still ache from the experience, but overall, I'm fine.
I was only on Capitol drive for about ten blocks and then I took my usual right turn onto 92nd Street. Ahead of my mini-van was an emerald green sedan, an American car of some kind. The green car was in the right lane, and I moved over into the left lane.
At this point, our cars were now neck and neck driving down 92nd Street. Most of the snow had melted on the pavement, but there were some spots where the salt hadn't completed its job yet. The snow was mounded up on the curbs and medians in the same fashion as all the other streets. The snowy landscape was intensely bright, and my sun visor was helping to shield my eyes from the bright sun. Slushy puddles had formed since some of the snow had started to melt. I could hear whooshing sounds underneath the tires of my van, and I was about to approach an area of the road where the snow had been reduced to a grayish version of sandy slush. I slowed as I approached the gray mess. I'm glad I did because what happened next is one of those life events that takes your breath away. It was one of those moments where time seems to slow, and get very sureal.
Suddenly, the green sedan veered left into my lane.
How to recount this is difficult since it is not what I would characterize as logical or sequential. It is rather my disjointed sensory experience than anything else.
The green car was suddenly diagonally placed into my lane directly in front of my mini-van. He had moved over without using his turn signal. His car was in such close proximity to mine that it reminded me of two cars intimately parallel parked on the side of a road, except we weren't parked. We were in full motion at about 35 miles per hour. I heard myself scream in a "aaahhhhh ahhhhhhh ahhhhhh" way.
On instinct, my right foot slammed on the brake. My arms were tensed up on the steering wheel. I lifted my right hand off the steering wheel, and pounded on the horn so that it was one long continuous blast. I felt my van's wheels sliding on the snow under the tires. The van's sensors were flashing at me in a ferocious yellow blinking way as if to say, "Slow down stupid. You are sliding. What the heck do you think you are doing?"
The antilock braking system suddenly engaged in an attempt to stop the van. The stop/start thuding under my right foot was getting rapidly faster in an almost machine gun firing sequence. The green car kept coming and coming and coming. My work bag, which was on the passenger seat, suddenly flew forward into the floor of the van.
At this point, I knew I was going to T-bone the green car. I just knew it. I could feel it in my bones. I knew it was a fact. My thoughts kept repeating themselves, "I'm going to hit this idiot. I'm going to hit him. I'm going to hit him. Oh my God, I'm going to hit him. Aaaaahhhhhh! Aaaaaahhhhhhhh!"
Then, my brakes finally engaged. The brakes instantly stopped the wheels from spinning, and brought my van to a sudden stop. It felt like the body of the van lurched forward on the chassis. My hand slipped off the horn. My head and neck were flung forward toward the steering wheel, but my seat belt was locked in place to keep me where I should have been. I didn't hit the green car, but we were "this close." If I had to guess, I'd guess we were 1/2 inch away from each other. Too close for comfort.
I instantly wondered if my wheels had suddenly found a dry spot on the pavement, and I also thanked God for the inventor of anti-lock brakes, traction control, and electronic stability control. I never give these things a second thought usually, but there I was trying to picture some incredible MENSA-smart engineer. Who was this person?
Then my thoughts returned to the green car. It had darted over into a turning bay in the median, and kept on going. It finally sped into the parking lot of a Health Care center.
Outloud, I said, "You'd better have an emergency, buddy!"
I noticed in my rear view mirror that traffic was approaching my mini-van from behind, so I lifted my foot off the brake and got out of their way. As I drove down the left-lane past the health care center, I was glaring at the green car. I just had to know what the heck happened. I had to know why he had nearly caused a serious collision.
Guess what?
He was on his cell phone. There was no emergency.
Ugh.
I will never understand.
Tears welled up in my eyes. I felt my body begin to shudder from the adrenaline released. Expletives erupted from my mouth. He had nearly injured or killed me, and all because his phone call was "too important" to pay attention to driving. Ugh.
Something intervened that morning. I don't know if it was fate or my guardian angel or luck or simply the miracle of mini-van engineering. I'm here to write this recounting, and I thank God for my life.
The green car keeps popping up in my dreams, in my day dreams, and especially in random moments. Perhaps it is a bit post-traumatic? Perhaps it is that I'm still mad at what nearly happened. I don't know for sure. I just know that I'm thanking God for Gabriel Voisin, the inventor of anti-lock brakes for aircraft. His invention led to the invention of ABS for automobiles.
Technology helped to keep me safe that day, but I'm not ruling out any guardian angels or higher power. He certainly works in mysterious ways.
My muscles still ache from the experience, but overall, I'm fine.
Thursday, February 14, 2008
Happy Valentine's Day!
The day started out well with an exchange of valentines among each of us in the B family. On my way to work though, I had a pretty significant near miss car accident. I had to make a very sudden stop, and now I'm sore in a variety of places. I may blog about that experience, but tonight I'm exhausted. Enjoy the pictures. :) Jen
Tuesday, February 12, 2008
Mystery Diagnosis: Alpha-1 & Len Geiger
When I went to the national Alpha-1 conference a few years ago, I sat down next to a very clean cut looking man. He introduced himself as Len, and he immediately asked me my story and how I came into the Alpha-1 community. He shared his story with me too, and like most of the stories I've heard from Alphas, his touched my heart. Please enjoy these videos of Len, who appeared on the television show, Mystery Diagnosis. Kudos to Len for getting the word out about Alpha-1!
Click on each video to watch Len's story. Part 1 is 7 minutes, 15 seconds, and part 2 is 8 minutes, 16 seconds.
Click on each video to watch Len's story. Part 1 is 7 minutes, 15 seconds, and part 2 is 8 minutes, 16 seconds.
Death and Politics
I just love the way Grace's thoughts meander during our conversations. Tonight, we were enjoying a "mommy and me" night together as Meghan and Daddy had gone off to watch a UWM Panthers basketball game.
As we enjoyed our dinner, Grace gleefully stuffed rice into her mouth as she said, "Mommy, I'm going to miss you when you die. I love you so much."
My first reaction was to chuckle as this didn't seem to be typical dinnertime conversation around the B family dinner table, but it made me smile nonetheless. Afterall, what mommy doesn't thoroughly enjoy having a child's unabiding love?
"Why are you laughing Mommy?"
Whoops, busted... :)
"Well Gracie, it makes me so happy that you'll miss me when I die and go to Heaven, but I really don't think you need to worry about that. I'm not sick and I'm not awfully old. You and I will have time together before I go off to Heaven."
"You ARE old Mommy."
Sigh. I forgot what it feels like to be five, almost 6, with a plethora of your lifetime ahead of you. I especially forgot how it felt to believe that...shock of all shocks...35 is so incredibly old. Aw, to be a child again...
"I'm not that old Grace. I'm not even old enough to be president of the United States yet."
"What is principal?"
"Do you mean president, Grace?"
"Uh huh."
"You have a principal at your school. He is in charge of the school. Well, a president is in charge of the United States where we live."
"Oh. Can a girl be president?" Aha, that's my girl. My heart swelled with pride. I've been working hard to teach her that women are just as capable and deserving as men are.
"Oh yes, a woman can be president. We haven't had one yet though."
"Why?"
"There are a lot of reasons why, but I think we will have a woman president while you are alive Gracie. I don't know who it will be, but I'm hoping that it happens because it will help little girls like you to know that they can be leaders and help people in our country.
Right now, there is a lady running for president. Her name is Hilary."
"What is running for president?"
"In our country, the people who want to be in charge...to be president...work hard to tell people that they want to be president. This is called running for president."
"I think you should be president, Mommy." More heart swelling with pride. :)
"Well Gracie, I'm not old enough to be president yet. You have to be 36 to be president. Daddy is old enough."
"Why do you have to be that old?"
"Well, the people who made our country wanted the president be wise so they made that rule. People who live a long time are often called wise or smart because they have lived a long time and learned a lot. The people who made the United States thought that 36-year olds would be smart enough, but even people who are 100 can be president."
"One hundred! That is really, really old."
"Yes, it is."
"Who is our president right now?"
"George Bush is our president, but his job is almost done. You can only be president for a total of 8 years. Now there are people running for president so that when George Bush is finished, we'll have a new president."
"Eight years! That is a long time." I suppose it is a long time in the lifetime of an almost six year old. That made me chuckle.
"Yes, it is. Right now, there are three people who are running for president. They are Hilary Clinton, Barack Obama, and John McCain."
"Barack! That is funny name. Why does he have that name?"
"Because his mommy wanted to name him that, Grace."
"Oh."
"There are lots of different names for people. Barack Obama is a fine name just like Hilary or John, the other people running for president. We should never laugh at someone's name."
"Okay Mama. I want to vote for the person you want to vote for."
"Well Grace, I hope you vote for the person you choose when you grow up. It is important for you to make your own decision about how to vote."
"Oh. After dinner, can I watch a Barbie DVD?" There it was: our first conversation about death and politics, and it was over in the flash of a thought in Grace's brain.
As we enjoyed our dinner, Grace gleefully stuffed rice into her mouth as she said, "Mommy, I'm going to miss you when you die. I love you so much."
My first reaction was to chuckle as this didn't seem to be typical dinnertime conversation around the B family dinner table, but it made me smile nonetheless. Afterall, what mommy doesn't thoroughly enjoy having a child's unabiding love?
"Why are you laughing Mommy?"
Whoops, busted... :)
"Well Gracie, it makes me so happy that you'll miss me when I die and go to Heaven, but I really don't think you need to worry about that. I'm not sick and I'm not awfully old. You and I will have time together before I go off to Heaven."
"You ARE old Mommy."
Sigh. I forgot what it feels like to be five, almost 6, with a plethora of your lifetime ahead of you. I especially forgot how it felt to believe that...shock of all shocks...35 is so incredibly old. Aw, to be a child again...
"I'm not that old Grace. I'm not even old enough to be president of the United States yet."
"What is principal?"
"Do you mean president, Grace?"
"Uh huh."
"You have a principal at your school. He is in charge of the school. Well, a president is in charge of the United States where we live."
"Oh. Can a girl be president?" Aha, that's my girl. My heart swelled with pride. I've been working hard to teach her that women are just as capable and deserving as men are.
"Oh yes, a woman can be president. We haven't had one yet though."
"Why?"
"There are a lot of reasons why, but I think we will have a woman president while you are alive Gracie. I don't know who it will be, but I'm hoping that it happens because it will help little girls like you to know that they can be leaders and help people in our country.
Right now, there is a lady running for president. Her name is Hilary."
"What is running for president?"
"In our country, the people who want to be in charge...to be president...work hard to tell people that they want to be president. This is called running for president."
"I think you should be president, Mommy." More heart swelling with pride. :)
"Well Gracie, I'm not old enough to be president yet. You have to be 36 to be president. Daddy is old enough."
"Why do you have to be that old?"
"Well, the people who made our country wanted the president be wise so they made that rule. People who live a long time are often called wise or smart because they have lived a long time and learned a lot. The people who made the United States thought that 36-year olds would be smart enough, but even people who are 100 can be president."
"One hundred! That is really, really old."
"Yes, it is."
"Who is our president right now?"
"George Bush is our president, but his job is almost done. You can only be president for a total of 8 years. Now there are people running for president so that when George Bush is finished, we'll have a new president."
"Eight years! That is a long time." I suppose it is a long time in the lifetime of an almost six year old. That made me chuckle.
"Yes, it is. Right now, there are three people who are running for president. They are Hilary Clinton, Barack Obama, and John McCain."
"Barack! That is funny name. Why does he have that name?"
"Because his mommy wanted to name him that, Grace."
"Oh."
"There are lots of different names for people. Barack Obama is a fine name just like Hilary or John, the other people running for president. We should never laugh at someone's name."
"Okay Mama. I want to vote for the person you want to vote for."
"Well Grace, I hope you vote for the person you choose when you grow up. It is important for you to make your own decision about how to vote."
"Oh. After dinner, can I watch a Barbie DVD?" There it was: our first conversation about death and politics, and it was over in the flash of a thought in Grace's brain.
Monday, February 11, 2008
Another Meghanism
Tonight as I was tucking Meghan into bed, I kissed her cheek.
"Ooooh Meghan. You smell fresh and clean from your bath. I love it when you smell fresh and clean."
Meghan responded in her typical tongue-in-cheek fashion, "I only like when I'm dirty. I like to smell fresh and dirty."
LOL
"Ooooh Meghan. You smell fresh and clean from your bath. I love it when you smell fresh and clean."
Meghan responded in her typical tongue-in-cheek fashion, "I only like when I'm dirty. I like to smell fresh and dirty."
LOL
Sunday, February 10, 2008
Sunday, February 03, 2008
Mommy's Answers to Life's Questions
Or rather, my crude attempt at answering the questions of a three and 1/2 year old. LOL
Tonight, as I was putting the girls to bed, we had quite a profound conversation, which taught me a little more about my daughters and their innate abilty to understand their surroundings, others in their life, and others' belief systems. While we have taught our children a specific belief system, I applaud and welcome learning about other belief systems. It helps the girls to see the larger world, while also encouraging them to accept diversity. Growing up with Alpha-1 Antitrypsin Deficiency will already provide the girls with a different life vantage. I hope to cultivate diplomacy and understanding in them as well.
I don't have a set plan for sharing information with them. Rather I try to use simple, everyday interactions as opportunities for learning, sharing, and explaining. With that said, here is one of those simple conversations, which also helps to remind me of life's simplicities.
"Mommy, wook at my finger. My owie hurts."
"Oh Meghan, I think it is getting better."
"It is not wed (red) anymore, Mama."
"That's right! It has a scab on it now. Your body is working hard at putting your owie back together. Our bodies are really good at fixing themselves."
"Why my body do that Mama?"
"Because God made us that way, Meghan. Isn't that so special that we can fix our own owies?"
Meghan responded, "Jesus is God, Mama."
"You're kind of right Meghan. God is Jesus' father. Jesus is God's son. They are family like we are."
Why I decided to add this statement, I'm not quite certain except that it was a very girly moment. Children are so completely "black and white" and are often confused by shades of gray until they get older. "Did you know that some people believe God is a woman?"
At this point, Grace joined the conversation. "Some people call God mother nature, Mommy."
As I was suddenly shocked at Grace's ability to see one of those shades of gray, I responded, "You're right Grace. Some people call Him that."
Meghan's thoughts returned to the cut on her finger, "My owie is gettin' betta, Mama."
"Yes. Yes, it is Meghan. Now, let's sing our goodnight songs girls."
"Okay Mama."
Tonight, as I was putting the girls to bed, we had quite a profound conversation, which taught me a little more about my daughters and their innate abilty to understand their surroundings, others in their life, and others' belief systems. While we have taught our children a specific belief system, I applaud and welcome learning about other belief systems. It helps the girls to see the larger world, while also encouraging them to accept diversity. Growing up with Alpha-1 Antitrypsin Deficiency will already provide the girls with a different life vantage. I hope to cultivate diplomacy and understanding in them as well.
I don't have a set plan for sharing information with them. Rather I try to use simple, everyday interactions as opportunities for learning, sharing, and explaining. With that said, here is one of those simple conversations, which also helps to remind me of life's simplicities.
"Mommy, wook at my finger. My owie hurts."
"Oh Meghan, I think it is getting better."
"It is not wed (red) anymore, Mama."
"That's right! It has a scab on it now. Your body is working hard at putting your owie back together. Our bodies are really good at fixing themselves."
"Why my body do that Mama?"
"Because God made us that way, Meghan. Isn't that so special that we can fix our own owies?"
Meghan responded, "Jesus is God, Mama."
"You're kind of right Meghan. God is Jesus' father. Jesus is God's son. They are family like we are."
Why I decided to add this statement, I'm not quite certain except that it was a very girly moment. Children are so completely "black and white" and are often confused by shades of gray until they get older. "Did you know that some people believe God is a woman?"
At this point, Grace joined the conversation. "Some people call God mother nature, Mommy."
As I was suddenly shocked at Grace's ability to see one of those shades of gray, I responded, "You're right Grace. Some people call Him that."
Meghan's thoughts returned to the cut on her finger, "My owie is gettin' betta, Mama."
"Yes. Yes, it is Meghan. Now, let's sing our goodnight songs girls."
"Okay Mama."
Saturday, February 02, 2008
10,000 Hits
10,000?
Wow! My blog has surpassed 10,000 hits. Geez! I get sick for a few days with a nasty cold virus, and I get a 10,000th visit to my blog. Wouldn't you know it? It was a visit from across the pond in the United Kingdom, and it was a cross-referral from a post I made on the Alpha-1 Association discussion forum.
I can't believe so many people are reading my blog. Of course, since I'm sometimes bummed that few people leave me comments, I'd like to solicit any family, friends, or lurkers to delurk and leave me a message. It helps me to know that you're reading and care about what I write. Thank you!
Wow! My blog has surpassed 10,000 hits. Geez! I get sick for a few days with a nasty cold virus, and I get a 10,000th visit to my blog. Wouldn't you know it? It was a visit from across the pond in the United Kingdom, and it was a cross-referral from a post I made on the Alpha-1 Association discussion forum.
I can't believe so many people are reading my blog. Of course, since I'm sometimes bummed that few people leave me comments, I'd like to solicit any family, friends, or lurkers to delurk and leave me a message. It helps me to know that you're reading and care about what I write. Thank you!
Wednesday, January 30, 2008
Hedgehog Day
Tonight, while my family enjoyed a night out at one of our local restaurants, Meghan provided us with some comedy.
"Mommy, guess what! Guess what!"
"What?" I responded.
"Miss Amy says it is almost Hedgehog Day." As she said her profoundly exciting news, she gestured in an overly animated way. As a three-year old diva fashionista, she has been carefully studying my gestures and has decided that a gesture is apropos with every word she says. Honestly, it makes me giggle a bit, but she doesn't seem to care or notice. She even cocks her head to the side as if to emphasize her point even more.
"Meghan, do you think she meant Groundhog Day?" I inquired with a straight face, yet sly grin.
"Uh huh." She responded without skipping a beat. "If the sun comes out and he sees his shadow, he will go back to sleep. If it is cloudy, winter will go 'way soon."
While she didn't have the Groundhog Day details quite straight, it was so cute to see her professing her newfound knowledge courtesy of preschool.
"Mommy, guess what! Guess what!"
"What?" I responded.
"Miss Amy says it is almost Hedgehog Day." As she said her profoundly exciting news, she gestured in an overly animated way. As a three-year old diva fashionista, she has been carefully studying my gestures and has decided that a gesture is apropos with every word she says. Honestly, it makes me giggle a bit, but she doesn't seem to care or notice. She even cocks her head to the side as if to emphasize her point even more.
"Meghan, do you think she meant Groundhog Day?" I inquired with a straight face, yet sly grin.
"Uh huh." She responded without skipping a beat. "If the sun comes out and he sees his shadow, he will go back to sleep. If it is cloudy, winter will go 'way soon."
While she didn't have the Groundhog Day details quite straight, it was so cute to see her professing her newfound knowledge courtesy of preschool.
Tuesday, January 29, 2008
Boston Marathon, ALF Run for Research
I feel so blessed and honored that Gracie and Meghan have been matched again with Jen Davis, a runner in the Boston Marathon. Jen will train and run in the marathon while wearing Grace & Meghan's names on her back.
Last year, the American Liver Foundation raised over 1.2 million dollars in the Run for Research. I'm just so excited and honored that she is running for my girls. It makes me feel so good to know that an almost stranger can care so much, and do so much good for herself and others.
Jen, we will be cheering for you on April 21st. Thank you so much for your dedication to raising money for liver research. We appreciate it more than you'll ever know.
Please consider contributing to Jen's goal of raising funds for research, here is her online donation page: http://www.active.com/donate/liverteam08/alfJDavis
Last year, the American Liver Foundation raised over 1.2 million dollars in the Run for Research. I'm just so excited and honored that she is running for my girls. It makes me feel so good to know that an almost stranger can care so much, and do so much good for herself and others.
Jen, we will be cheering for you on April 21st. Thank you so much for your dedication to raising money for liver research. We appreciate it more than you'll ever know.
Please consider contributing to Jen's goal of raising funds for research, here is her online donation page: http://www.active.com/donate/liverteam08/alfJDavis
Sunday, January 27, 2008
Preeclampsia/HELLP Claims Another Life
This news just makes me sick. As one of my fellow preeclampsia survivors said, there are no words for when baby twins and their daddy have to go on living their lives without their mommy/wife. Awful...simply awful.
Preeclampsia/HELLP claim another beautiful soul
Preeclampsia/HELLP claim another beautiful soul
Friday, January 25, 2008
Longitudinal Study of Alpha-1
WOOHOO!
Today, I was notified that the Cholestatic Liver Disease Research Consortium (CLiC) has begun the longitudinal study of the causes of intrahepatic cholestasis. Last fall, I interviewed the chief investigator, Dr. Ron Sokol, who explained how the study works. See this post to read that article.
As much as I'm excited and will be enrolling my daughters in this study, I'm equally upset that it will require me to add yet another set of tests for both Grace & Meghan. They are easily traumatized by blood tests, and while this research may help them down the road, it means that they must sacrifice some of their DNA. This is the part of their Alpha-1 that I don't like. Making them participate in research gives me some pause, but I know that this study is being conducted to try to figure out why some people with Alpha-1 never develop significant liver disease and others develop it at birth like Grace did. Understanding that may lead to a cure.
In any case, I hope that parents of Alpha-1 children sign their kiddos up for this study. It is a way for us to contribute to a possible cure. I know they need over 250 Alphas to make this study work. Here is the email I received. Please consider enrolling your Alpha-1 child:
This is an update from the Cholestatic Liver Disease Consortium. The following study is currently recruiting participants. This update provides information such as a study summary, eligibility criteria, and a list of participating center locations. If you are interested in participating in this study or you have more questions, please contact the center nearest to you.
Study Name: 6001 - Longitudinal Study of Genetic Causes of Intrahepatic Cholestasis
Study Status: Recruiting
Participating Centers and Contact Information
Children's Memorial Hospital (Chicago) (CLIC) < i>(New)
Chicago, Illinois
Principal Investigator: Peter Whitington, MD
Contact Person: Krista Tuzinkiewicz
Office: 773-975-8523
Email: ktuzinkiewicz@childrensmemorial.org
Cincinnati's Children's Hospital Medical Center (CLIC) (New)
Cincinnati, Ohio
Principal Investigator: James Heubi
Contact Person: Jan Dietz, RN
Office: 513-636-7266
Email: jan.dietz@cchmc.org
Mount Sinai Medical Center (CLIC) (New)
New York, New York
Principal Investigator: Frederick Suchy, MD
C ontact Person: Sanobar Parkar, MD
Office: 212-659-8046
Email: sanobar.parkar@msnyuhealth.org
St. Louis University (CLIC) (New)
St. Louis, Missouri
Principal Investigator: Jeffrey Teckman, MD
Associate Professor of Pediatrics and Biochemistry and Molecular Biology
Director, Pediatric Gastroenterology and Hepatology
Saint Louis University School of Medicine
Cardinal Glennon Children's Medical Center
1465 South Grand Blvd.
Saint Louis, MO 63104
Office 314-577-5647
e-mail: teckmanj@slu.edu
research coordinator for CLiC, Vikki Kociela, e-mail: kocielav@slu.edu
The Children's Hospital (Denver) (CLIC) (New)
Denver, Colorado
Principal Investigator: Ronald Sokol, MD
Contact Person: Elizabeth Esterl, RN,MS
Office: 720-777-8430
Email: esterl.elizabeth@tchden.org
Washington University School of Medicine (CLIC) (New)
St. Louis, Missouri
Contact Person: Rosemary Nagy, MBA
Office: 314-454-2295
Email: Nagy_r@kids.wustl.edu
Today, I was notified that the Cholestatic Liver Disease Research Consortium (CLiC) has begun the longitudinal study of the causes of intrahepatic cholestasis. Last fall, I interviewed the chief investigator, Dr. Ron Sokol, who explained how the study works. See this post to read that article.
As much as I'm excited and will be enrolling my daughters in this study, I'm equally upset that it will require me to add yet another set of tests for both Grace & Meghan. They are easily traumatized by blood tests, and while this research may help them down the road, it means that they must sacrifice some of their DNA. This is the part of their Alpha-1 that I don't like. Making them participate in research gives me some pause, but I know that this study is being conducted to try to figure out why some people with Alpha-1 never develop significant liver disease and others develop it at birth like Grace did. Understanding that may lead to a cure.
In any case, I hope that parents of Alpha-1 children sign their kiddos up for this study. It is a way for us to contribute to a possible cure. I know they need over 250 Alphas to make this study work. Here is the email I received. Please consider enrolling your Alpha-1 child:
This is an update from the Cholestatic Liver Disease Consortium. The following study is currently recruiting participants. This update provides information such as a study summary, eligibility criteria, and a list of participating center locations. If you are interested in participating in this study or you have more questions, please contact the center nearest to you.
Study Name: 6001 - Longitudinal Study of Genetic Causes of Intrahepatic Cholestasis
Study Status: Recruiting
Participating Centers and Contact Information
Children's Memorial Hospital (Chicago) (CLIC) < i>(New)
Chicago, Illinois
Principal Investigator: Peter Whitington, MD
Contact Person: Krista Tuzinkiewicz
Office: 773-975-8523
Email: ktuzinkiewicz@childrensmemorial.org
Cincinnati's Children's Hospital Medical Center (CLIC) (New)
Cincinnati, Ohio
Principal Investigator: James Heubi
Contact Person: Jan Dietz, RN
Office: 513-636-7266
Email: jan.dietz@cchmc.org
Mount Sinai Medical Center (CLIC) (New)
New York, New York
Principal Investigator: Frederick Suchy, MD
C ontact Person: Sanobar Parkar, MD
Office: 212-659-8046
Email: sanobar.parkar@msnyuhealth.org
St. Louis University (CLIC) (New)
St. Louis, Missouri
Principal Investigator: Jeffrey Teckman, MD
Associate Professor of Pediatrics and Biochemistry and Molecular Biology
Director, Pediatric Gastroenterology and Hepatology
Saint Louis University School of Medicine
Cardinal Glennon Children's Medical Center
1465 South Grand Blvd.
Saint Louis, MO 63104
Office 314-577-5647
e-mail: teckmanj@slu.edu
research coordinator for CLiC, Vikki Kociela, e-mail: kocielav@slu.edu
The Children's Hospital (Denver) (CLIC) (New)
Denver, Colorado
Principal Investigator: Ronald Sokol, MD
Contact Person: Elizabeth Esterl, RN,MS
Office: 720-777-8430
Email: esterl.elizabeth@tchden.org
Washington University School of Medicine (CLIC) (New)
St. Louis, Missouri
Contact Person: Rosemary Nagy, MBA
Office: 314-454-2295
Email: Nagy_r@kids.wustl.edu
Monday, January 21, 2008
Them...
I've been stacking them up for over five years. They were not in piles of any organization. They were not organized by size. They were not organized by age. They were falling down and tipping over under their own weight. They were neglected. They were hidden away. Many of them I could not see. They were avoided until today.
Today, they helped me to face my past and acknowledge my present.
They are a symbol of what I feel could have been. They are shadows of my past. They hit me in the pit of my heart. They get to the core of my being. They evoke my deepest regrets and failures.
They run the gamut of smallest to large. They were supposed to represent a time of joy and pride. Simply put, they make me cry.
They are my daughters' baby clothes. Each one I touched evoked a different memory.
The tiny purple knit hat which Gracie wore the first time I held her. I was so scared that I'd pull her central line out of her scalp. I couldn't really see her just that large hat on her tiny 3 pound body. I remember thinking it looked like a Smurf hat. That hat I kept. I couldn't part with it.
Preemie socks which remind me of the smallest feet I've ever seen. On Meghan's legs, those socks went all the way up to her thighs. I kept those too.
Onesies which had spit up stains. Little pink sleepers and the cutest little dresses. All of these memories remind me of what I can no longer have. My body can't be pregnant anymore...not without endangering my own life and the life of any unborn baby. Preeclampsia took that opportunity away.
Those tiny little clothes are now packed away into a large shopping bag and are destined for my local Goodwill donation center.
I only hope that they bring someone else joy, pride, happiness, and good memories.
Today, they helped me to face my past and acknowledge my present.
They are a symbol of what I feel could have been. They are shadows of my past. They hit me in the pit of my heart. They get to the core of my being. They evoke my deepest regrets and failures.
They run the gamut of smallest to large. They were supposed to represent a time of joy and pride. Simply put, they make me cry.
They are my daughters' baby clothes. Each one I touched evoked a different memory.
The tiny purple knit hat which Gracie wore the first time I held her. I was so scared that I'd pull her central line out of her scalp. I couldn't really see her just that large hat on her tiny 3 pound body. I remember thinking it looked like a Smurf hat. That hat I kept. I couldn't part with it.
Preemie socks which remind me of the smallest feet I've ever seen. On Meghan's legs, those socks went all the way up to her thighs. I kept those too.
Onesies which had spit up stains. Little pink sleepers and the cutest little dresses. All of these memories remind me of what I can no longer have. My body can't be pregnant anymore...not without endangering my own life and the life of any unborn baby. Preeclampsia took that opportunity away.
Those tiny little clothes are now packed away into a large shopping bag and are destined for my local Goodwill donation center.
I only hope that they bring someone else joy, pride, happiness, and good memories.
Hailey Needs Continued Prayers
Tante's little peanut is still not doing well in the NICU. I don't have permission to post the details, but please know that Hailey needs your prayers/positive thoughts. Thanks!
Sunday, January 20, 2008
Go Pack Go!
Today, the Green Bay Packers meet up with the New York Giants for the NFC Division championship. It is a very green and gold day on the frozen tundra, where we currently have a temperature of -6 degrees. Burr!
Saturday, January 19, 2008
NSAIDs and Alpha-1 Antitrypsin Deficiency
Hmmm! I guess the children's ibuprofen in use at my house should be discontinued. Interesting, and I'm amazed this isn't more well known within the Alpha-1 community. Obviously, this hasn't been tested on humans, but animal models are really quite interesting and can show causal relationships.
Non-Steroidal Anti-Inflammatory Drug Increases Liver Damage In Mice Carrying Mutant Human Gene
Alpha-1-antitrypsin deficiency isn't a term that rolls right off the tongue. But people diagnosed with this genetic disorder learn its potential effects well. They know they shouldn't smoke or be around smokers because they are at increased risk for developing emphysema at a young age. In addition, some patients with alpha-1-antitrypsin (AT) deficiency can develop serious liver disease. But predicting which of them are at risk for liver disease is not yet possible.
Now research performed at Washington University School of Medicine in St. Louis sheds light on the mechanisms that contribute to liver disease in alpha-1-AT deficiency patients. Using an experimental mouse model of the disorder, the researchers investigated the effects of a non-steroidal anti-inflammatory drug (NSAID) on liver injury. An estimated 15 to 20 million people in the United States take NSAIDs like ibuprofen and naproxen on a long-term basis. Read the rest at:
http://www.medicalnewstoday.com/articles/56844.php
Non-Steroidal Anti-Inflammatory Drug Increases Liver Damage In Mice Carrying Mutant Human Gene
Alpha-1-antitrypsin deficiency isn't a term that rolls right off the tongue. But people diagnosed with this genetic disorder learn its potential effects well. They know they shouldn't smoke or be around smokers because they are at increased risk for developing emphysema at a young age. In addition, some patients with alpha-1-antitrypsin (AT) deficiency can develop serious liver disease. But predicting which of them are at risk for liver disease is not yet possible.
Now research performed at Washington University School of Medicine in St. Louis sheds light on the mechanisms that contribute to liver disease in alpha-1-AT deficiency patients. Using an experimental mouse model of the disorder, the researchers investigated the effects of a non-steroidal anti-inflammatory drug (NSAID) on liver injury. An estimated 15 to 20 million people in the United States take NSAIDs like ibuprofen and naproxen on a long-term basis. Read the rest at:
http://www.medicalnewstoday.com/articles/56844.php
Friday, January 18, 2008
Shiny Teeth
A recent trip to the dentist, which went amazingly well and completely uneventful. Imagine that!
Grace getting ready to begin with "Meow Meow" her Fur Real Friend
Grace's cleaning in progress
Meghan's first cleaning. She did great!
Don't ya love those shades? :)
Grace getting ready to begin with "Meow Meow" her Fur Real Friend
Grace's cleaning in progress
Meghan's first cleaning. She did great!
Don't ya love those shades? :)
Thursday, January 17, 2008
Prayers for Hailey
Tante's little girl, Hailey, is having a very rough day in the NICU. Please send positive thoughts and prayers that she can fight off her circumstances.
Friday, January 11, 2008
Mommy!
Tip: If you are the least bit squeamish, you may want to stop reading at this point. You can't say that I didn't warn you.
"Moooooommmmmmmmmyyyyyyyyyyyy!" came out of the darkness of the girls' room. I had fallen asleep about 45 minutes before then and was startled awake by the sound of Meghan's voice.
Her voice awoke a primal force within me, the mommy reflex. Before I even knew why I was in motion, I had arrived next to Meghan's bed. I could see the shadowy outline of her head along with its curly mop of messed up bed head. What I smelled was too familiar, and made me want to wretch. I suppressed that urge to wretch.
"Mommy! I puked," wailed Meghan as she began to wretch again. I had no clue where the first location was of the offending vomit, but I figured that it was probably matted into her hair and pillow.
At this point, the mommy, who didn't want to wake up big sister, the sleeping giant of five year olds, who also didn't want to have to clean the mattress, who desperately wanted to keep said pukey puke essence away from her, scooped up the puker and ran at top speed about 10 feet into the solace of our upstairs 1946 vintage bathroom. While pointing Meghan's face away from my body in mid-run, Meghan vomited onto the goldenrod tile sprawling onto the floor of my bathroom. I was thankful she missed the carpet in the hallway, though.
I resisted the urge to acknowledge the squishy spaghetti noodles suddenly appearing at and under my toes. I slipped a bit as the liquid vomit squished in between my toes. As I veered right toward the toilet, I noticed that the toilet lid was actually closed. Why oh why hadn't Grace left the lid up on this day? Even though having the toilet seat lid down is the compromise in our house, I was cursing the lid inside my head. Meghan was about to blow again, and I knew it was futile to believe that I'd get the lid open in time.
As I predicted in that split second analysis, Meghan let loose on the wall next to the toilet and lacquered the Kandoo wipes box on the floor next to the commode. Spaghetti noodles along with Meghan's nightly strawberry-flavored pediatric drink painted my walls, and then began their gravity induced slide onto our tile floor. The word gross appeared in my thoughts.
At this point, my urge to vomit too became quite intense. I stuffed the urge down again just as Meghan began to cough, sputter, and choke a bit more. A long trail of saliva was running down her chin, and she coughed out, "I puked. I puked. I puked."
"I know Meghan. Try to take a breath honey. Calm down. You're almost done puking," I replied reassuringly. As quickly as I said those words, my karma, my bad luck, my stupid urge to be ever the optimist, or something to that effect came back to bite me square on the butt.
Meghan began to erupt again and again and again and again. Well, you get the picture. She eventually proceeded to vomit bile and then finished it off with some trips to the potty. All night long, Meghan vomited in about 12-14 minute intervals. She finally wrapped up the puking at 5:41 a.m. Yes, I was watching the clock because my mind kept lulling me into a false sense of this round of puking would be the final one, and I could actually get some much needed sleep. Dear husband, Charlie, was initially outside shoveling our sidewalks when my initiation into the festival of fun called a child puking all night long. He joined my fun and spent the night moving a "puke bowl" underneath Meghan's chin as we both decided we need to lie down even though sleep was no where in sight. Meghan, who Charlie dubbed as Kicky McPoker, squirmed throughout the night as her tummy would revolt. When we were not dealing with vomit, we were resting poorly as she kicked, whined, and begged for something to drink. "I'm thirsty. I'm thirsty." (Yes, we did fall into that trap twice. She asked for water. We felt it was finally over, and low and behold, that was not the case. Ugh.)
It was a sleepless night. It was one for our parenting record books, but still quite doesn't live up to the Norovirus episode of 2006. Meghan's perfect delivery of vomit into the Christmas gift bag I was opening still tops the list. I'm sure when our children have left the nest and Charlie and I want to reminisce we may recall this day. For now, I'd rather forget.
I just hope and pray that this particular stomach virus stays far away from me and anyone else who steps foot in this happy home.
"Moooooommmmmmmmmyyyyyyyyyyyy!" came out of the darkness of the girls' room. I had fallen asleep about 45 minutes before then and was startled awake by the sound of Meghan's voice.
Her voice awoke a primal force within me, the mommy reflex. Before I even knew why I was in motion, I had arrived next to Meghan's bed. I could see the shadowy outline of her head along with its curly mop of messed up bed head. What I smelled was too familiar, and made me want to wretch. I suppressed that urge to wretch.
"Mommy! I puked," wailed Meghan as she began to wretch again. I had no clue where the first location was of the offending vomit, but I figured that it was probably matted into her hair and pillow.
At this point, the mommy, who didn't want to wake up big sister, the sleeping giant of five year olds, who also didn't want to have to clean the mattress, who desperately wanted to keep said pukey puke essence away from her, scooped up the puker and ran at top speed about 10 feet into the solace of our upstairs 1946 vintage bathroom. While pointing Meghan's face away from my body in mid-run, Meghan vomited onto the goldenrod tile sprawling onto the floor of my bathroom. I was thankful she missed the carpet in the hallway, though.
I resisted the urge to acknowledge the squishy spaghetti noodles suddenly appearing at and under my toes. I slipped a bit as the liquid vomit squished in between my toes. As I veered right toward the toilet, I noticed that the toilet lid was actually closed. Why oh why hadn't Grace left the lid up on this day? Even though having the toilet seat lid down is the compromise in our house, I was cursing the lid inside my head. Meghan was about to blow again, and I knew it was futile to believe that I'd get the lid open in time.
As I predicted in that split second analysis, Meghan let loose on the wall next to the toilet and lacquered the Kandoo wipes box on the floor next to the commode. Spaghetti noodles along with Meghan's nightly strawberry-flavored pediatric drink painted my walls, and then began their gravity induced slide onto our tile floor. The word gross appeared in my thoughts.
At this point, my urge to vomit too became quite intense. I stuffed the urge down again just as Meghan began to cough, sputter, and choke a bit more. A long trail of saliva was running down her chin, and she coughed out, "I puked. I puked. I puked."
"I know Meghan. Try to take a breath honey. Calm down. You're almost done puking," I replied reassuringly. As quickly as I said those words, my karma, my bad luck, my stupid urge to be ever the optimist, or something to that effect came back to bite me square on the butt.
Meghan began to erupt again and again and again and again. Well, you get the picture. She eventually proceeded to vomit bile and then finished it off with some trips to the potty. All night long, Meghan vomited in about 12-14 minute intervals. She finally wrapped up the puking at 5:41 a.m. Yes, I was watching the clock because my mind kept lulling me into a false sense of this round of puking would be the final one, and I could actually get some much needed sleep. Dear husband, Charlie, was initially outside shoveling our sidewalks when my initiation into the festival of fun called a child puking all night long. He joined my fun and spent the night moving a "puke bowl" underneath Meghan's chin as we both decided we need to lie down even though sleep was no where in sight. Meghan, who Charlie dubbed as Kicky McPoker, squirmed throughout the night as her tummy would revolt. When we were not dealing with vomit, we were resting poorly as she kicked, whined, and begged for something to drink. "I'm thirsty. I'm thirsty." (Yes, we did fall into that trap twice. She asked for water. We felt it was finally over, and low and behold, that was not the case. Ugh.)
It was a sleepless night. It was one for our parenting record books, but still quite doesn't live up to the Norovirus episode of 2006. Meghan's perfect delivery of vomit into the Christmas gift bag I was opening still tops the list. I'm sure when our children have left the nest and Charlie and I want to reminisce we may recall this day. For now, I'd rather forget.
I just hope and pray that this particular stomach virus stays far away from me and anyone else who steps foot in this happy home.
Tuesday, January 08, 2008
Thursday, January 03, 2008
When I Grow Up...
Tonight, while the girls and I were gathered around the dinner table, Meghan shared some of her 3-year old logic.
"Mommy! When I grow up, I wanna to be a cheerleader."
"Oh really, Meghan?"
"Uh huh. And when I'm done, I wanna be a mommy like you."
(Insert sound of Mommy's heart melting just a bit.)
Grace chimed in, "I want to be a worker when I grow up."
I asked, "What kind of worker Grace?"
"A worker like you, Mommy! I want to work where you work Mommy."
(Insert sound of Jen's inner moan regarding her workplace.)
"Oh that is so nice Gracie, but I'd rather you work someplace where you'll love what you do."
Grace added, "I want to work with you Mommy."
"Mommy hopes that she won't work there when you grow up Gracie."
Meghan joined in again with, "I want you to be my baby Mommy."
"Well that would be nice Meghan, but I don't think I made a very nice baby when I was a baby. Ask Grandma Sherry. I cried and cried and cried for nearly a year."
Meghan asked, "Why?"
"I had an owie tummy. So, you want to be a cheerleader Meghan?"
"Uh huh, Kafaleen (Kathleen) wants to be a cheerleader too."
"Mommy! When I grow up, I wanna to be a cheerleader."
"Oh really, Meghan?"
"Uh huh. And when I'm done, I wanna be a mommy like you."
(Insert sound of Mommy's heart melting just a bit.)
Grace chimed in, "I want to be a worker when I grow up."
I asked, "What kind of worker Grace?"
"A worker like you, Mommy! I want to work where you work Mommy."
(Insert sound of Jen's inner moan regarding her workplace.)
"Oh that is so nice Gracie, but I'd rather you work someplace where you'll love what you do."
Grace added, "I want to work with you Mommy."
"Mommy hopes that she won't work there when you grow up Gracie."
Meghan joined in again with, "I want you to be my baby Mommy."
"Well that would be nice Meghan, but I don't think I made a very nice baby when I was a baby. Ask Grandma Sherry. I cried and cried and cried for nearly a year."
Meghan asked, "Why?"
"I had an owie tummy. So, you want to be a cheerleader Meghan?"
"Uh huh, Kafaleen (Kathleen) wants to be a cheerleader too."
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