Saturday, May 03, 2008
Friday, May 02, 2008
Flashbacks
Four years ago, I was on full bedrest in our hospital's antepartum unit. It was day 8 of bedrest, and I had just passed my initial goal of making it to May 1st. We already had 2 April birthdays in our family, and I was hoping that there wouldn't be another arrival...an arrival way too soon for my liking.
My blood pressure was still climbing as severe preeclampsia was deepening its hold on me. I spent most of my time in a darkened room because I had had some uncontrolled twitching where my head jerked to my left side. My doctors didn't want me to have visitors except for my DH, and I couldn't have phone calls since the ringing would set me into twitching mode.
I was resolved to stick it out as long as I could, but I'll be honest. I was secretly hoping that the doctors would say, "it's time." It didn't happen that day 3 years ago, and yes, I did know that more time in utero is better. I knew that, but this was my 2nd horrible experience with severe preeclampisa. I was slowly losing my grip on my sanity as I stayed indoors in the dark, and this was day 8. My next goal was to make it to Cinco de Mayo, the 5th of May, and it looked like I might make it.
I had noticed that my baby was moving around less and less so I took it upon myself to poke him/her as much as I could to keep up the stimulation. This was beginning to bother me and the nurses were beginning to record decels on my non-stress tests and BPPs. My amniotic fluid was dropping off, and at the end of May 1st, 2004, I noticed that my vision was suddenly changing. Straight lines appeared squiggly to me, and I thought, "Oh no, it is happening again. This is what happened when I was pregnant with Gracie 2 years ago."
Gosh I was stressed out, but calm all at the same time. It was sort of a calm before the storm of Meghan's birth on May 3rd. Hind sight is always 20 20, but I hope that I did my best to take care of Miss Meghan that day.
My blood pressure was still climbing as severe preeclampsia was deepening its hold on me. I spent most of my time in a darkened room because I had had some uncontrolled twitching where my head jerked to my left side. My doctors didn't want me to have visitors except for my DH, and I couldn't have phone calls since the ringing would set me into twitching mode.
I was resolved to stick it out as long as I could, but I'll be honest. I was secretly hoping that the doctors would say, "it's time." It didn't happen that day 3 years ago, and yes, I did know that more time in utero is better. I knew that, but this was my 2nd horrible experience with severe preeclampisa. I was slowly losing my grip on my sanity as I stayed indoors in the dark, and this was day 8. My next goal was to make it to Cinco de Mayo, the 5th of May, and it looked like I might make it.
I had noticed that my baby was moving around less and less so I took it upon myself to poke him/her as much as I could to keep up the stimulation. This was beginning to bother me and the nurses were beginning to record decels on my non-stress tests and BPPs. My amniotic fluid was dropping off, and at the end of May 1st, 2004, I noticed that my vision was suddenly changing. Straight lines appeared squiggly to me, and I thought, "Oh no, it is happening again. This is what happened when I was pregnant with Gracie 2 years ago."
Gosh I was stressed out, but calm all at the same time. It was sort of a calm before the storm of Meghan's birth on May 3rd. Hind sight is always 20 20, but I hope that I did my best to take care of Miss Meghan that day.
Wednesday, April 30, 2008
Thursday, April 24, 2008
Historic Day
I'm amazed. I'm proud. I'm relieved. I'm wondering what the future holds.
The Senate passed the Genetic Nondiscrimination Act (GINA) today. It has been years in the making, and it is finally here. I'm still absorbing all the possibilities that this presents. I'm on cloud 9.
My children won't face a future filled with genetic discrimination. Praise the Lord!
From the Genetic Alliance
FOR IMMEDIATE RELEASE
Senate Passes Historic Bill on Genetic Information Nondiscrimination
Americans Can Take Advantage of Health Advances without Fearing Discrimination
Washington DC– April 24, 2008 – With overwhelming support the Senate today passed by a vote of 95-0 the Genetic Information Nondiscrimination Act (S. 358). With sponsors, the bill is a testament to a strong bipartisan effort. The Coalition for Genetic Fairness commends the members of the Senate for its commitment to affording comprehensive protections against genetic discrimination.
The Genetic Information Nondiscrimination Act (GINA) paves the way for the responsible use of genetic information while protecting against discrimination with respect to health insurance and employment.
"We are grateful for the bipartisan efforts of our sponsors in the Senate – Senators Edward Kennedy (D—MA) and Olympia Snowe (R—ME) as well as the tremendous support of Senator Michael Enzi (R—WY). They are our champions and are making history today," said Sharon Terry, President and CEO of Genetic Alliance, and President of the Coalition. "Fears that genetic information could be misused hurts individuals, researchers, clinicians, and associated industries. Today, our fears have been addressed."
Marla Gilson, Director of the Washington Action Office of Hadassah, said, "Just 10 years ago, only 100 genetic tests existed. Today, that number has grown to over 1,000 and everyday these tests are helping diagnose thousands of health conditions. Given the Jewish community's historical experiences with genetic issues, we worked hard to see that this bill was passed."
The Coalition has worked for thirteen years toward the passage of legislation to eliminate the misuse of genetic information. Discrimination on the basis of genetic information had led individuals to shy away from genetic testing that could help them manage their health proactively. It also has caused many to opt out of clinical trials for fear that their genetic information would be used against them. This lack of participation has slowed the research and development of treatments and beneficial drugs.
"We now have a huge task ahead of us." said Kathy Hudson, director of the Genetics and Public Policy Center at Johns Hopkins University, "to make sure that doctors, researchers, and the public are aware of the new protections GINA provides."
Just as the House of Representatives did when it passed GINA in April 2007, with 224 cosponsors, S.358 protects Americans from discrimination by health insurers or employers based on genetic information by:
* Prohibiting group health plans and issuers offering coverage on the group or individual market from basing eligibility determinations or adjusting premiums or contributions on the basis of genetic information. They cannot request, require or purchase the results of genetic tests, or disclose genetic information.
* Prohibiting issuers of Medigap policies from adjusting pricing or conditioning eligibility on the basis of genetic information. They cannot request, require or purchase the results of genetic tests, or disclose genetic information.
* Prohibiting employers from firing, refusing to hire, or otherwise discriminating with respect to compensation, terms, conditions or privileges of employment. Employers may not request, require or purchase genetic information, and may not disclose genetic information. Similar provisions apply to employment agencies and labor organizations.
The bill goes to the House, and is assured of passage there as early as next week. The White House has signaled its willingness to sign GINA into law.
###
The Coalition for Genetic Fairness is an alliance of advocacy organizations, health professionals, and industry leaders working to educate Congressional policymakers about the importance of legal protections for genetic information and ensure passage of meaningful genetic information nondiscrimination legislation.
The Coalition for Genetic Fairness is led by: Genetic Alliance, Affymetrix, American Academy of Pediatrics, American Heart Association, American Society of Human Genetics, Brown University, Hadassah, National Society of Genetic Counselors, the National Workrights Institute and the PKD Foundation.
Coalition for Genetic Fairness • http://www.geneticfairness.org • 4301 Connecticut Ave. NW #404, Washington DC • 20008-2369 • Phone: 202.
The Senate passed the Genetic Nondiscrimination Act (GINA) today. It has been years in the making, and it is finally here. I'm still absorbing all the possibilities that this presents. I'm on cloud 9.
My children won't face a future filled with genetic discrimination. Praise the Lord!
From the Genetic Alliance
FOR IMMEDIATE RELEASE
Senate Passes Historic Bill on Genetic Information Nondiscrimination
Americans Can Take Advantage of Health Advances without Fearing Discrimination
Washington DC– April 24, 2008 – With overwhelming support the Senate today passed by a vote of 95-0 the Genetic Information Nondiscrimination Act (S. 358). With sponsors, the bill is a testament to a strong bipartisan effort. The Coalition for Genetic Fairness commends the members of the Senate for its commitment to affording comprehensive protections against genetic discrimination.
The Genetic Information Nondiscrimination Act (GINA) paves the way for the responsible use of genetic information while protecting against discrimination with respect to health insurance and employment.
"We are grateful for the bipartisan efforts of our sponsors in the Senate – Senators Edward Kennedy (D—MA) and Olympia Snowe (R—ME) as well as the tremendous support of Senator Michael Enzi (R—WY). They are our champions and are making history today," said Sharon Terry, President and CEO of Genetic Alliance, and President of the Coalition. "Fears that genetic information could be misused hurts individuals, researchers, clinicians, and associated industries. Today, our fears have been addressed."
Marla Gilson, Director of the Washington Action Office of Hadassah, said, "Just 10 years ago, only 100 genetic tests existed. Today, that number has grown to over 1,000 and everyday these tests are helping diagnose thousands of health conditions. Given the Jewish community's historical experiences with genetic issues, we worked hard to see that this bill was passed."
The Coalition has worked for thirteen years toward the passage of legislation to eliminate the misuse of genetic information. Discrimination on the basis of genetic information had led individuals to shy away from genetic testing that could help them manage their health proactively. It also has caused many to opt out of clinical trials for fear that their genetic information would be used against them. This lack of participation has slowed the research and development of treatments and beneficial drugs.
"We now have a huge task ahead of us." said Kathy Hudson, director of the Genetics and Public Policy Center at Johns Hopkins University, "to make sure that doctors, researchers, and the public are aware of the new protections GINA provides."
Just as the House of Representatives did when it passed GINA in April 2007, with 224 cosponsors, S.358 protects Americans from discrimination by health insurers or employers based on genetic information by:
* Prohibiting group health plans and issuers offering coverage on the group or individual market from basing eligibility determinations or adjusting premiums or contributions on the basis of genetic information. They cannot request, require or purchase the results of genetic tests, or disclose genetic information.
* Prohibiting issuers of Medigap policies from adjusting pricing or conditioning eligibility on the basis of genetic information. They cannot request, require or purchase the results of genetic tests, or disclose genetic information.
* Prohibiting employers from firing, refusing to hire, or otherwise discriminating with respect to compensation, terms, conditions or privileges of employment. Employers may not request, require or purchase genetic information, and may not disclose genetic information. Similar provisions apply to employment agencies and labor organizations.
The bill goes to the House, and is assured of passage there as early as next week. The White House has signaled its willingness to sign GINA into law.
###
The Coalition for Genetic Fairness is an alliance of advocacy organizations, health professionals, and industry leaders working to educate Congressional policymakers about the importance of legal protections for genetic information and ensure passage of meaningful genetic information nondiscrimination legislation.
The Coalition for Genetic Fairness is led by: Genetic Alliance, Affymetrix, American Academy of Pediatrics, American Heart Association, American Society of Human Genetics, Brown University, Hadassah, National Society of Genetic Counselors, the National Workrights Institute and the PKD Foundation.
Coalition for Genetic Fairness • http://www.geneticfairness.org • 4301 Connecticut Ave. NW #404, Washington DC • 20008-2369 • Phone: 202.
I'm Finding Courage Through Sharing
As an avid reader of blogs, I've discovered a gem of a writer in Michelle at In the Life of a Child. She began a blog carnival called Finding Courage Through Sharing. It is aimed at a large community of parents struggling through extreme medical challenges with their children. The purpose of the carnival is to give these parents a voice, a place to connect, to grieve a loss or a setback, to share a concern, a frustration, or to share those rare and wonderful triumphs… and to begin trying to heal. It is meant for any parent who has been through any form of medical challenge with their child, and also for those who are still in the midst of facing those challenges.
This post introduces my fellow participants of that carnival to my story.
At my 20 weeks visit, the ultrasound technician pressed down on my stomach and rolled the wand through the warm jelly. I was excited and straining my eyes to see the grainy images coming across on the monitor. Every so often, I was able to identify my baby's body parts. Colleen, the technician, would say things like, "Here's the heart. That is what we want to see. Nice blood flow. Nice strong beat." My husband, Charlie, looked elated to see our baby growing inside of me. "How big is the baby?"
Colleen replied, "I'll let the doctor go over that with you in just a little while." When it was all finished, she handed me two black and white pictures. We made our way back to Dr. C's office and sat down on the other side of his cherry desk. Charlie inquired, "What do you think?"
I replied, "I'm not sure. I'm nauseous from her pressing on my stomach so much." The pregnancy was really weighing on me. I had always thought that I’d begin to feel better by the midpoint, but it hadn't come yet. I was disappointed. I wanted to be one of those glowing mamas-to-be.
Just then, Dr. C came into his office and sat down behind the desk. He picked up my chart, and began to review the images one-by-one. I noticed that he stopped on one and carefully inspected it, but then moved along to review the others. I was looking for clues to how he felt my baby was doing. His body language revealed something wasn't quite right.
"The baby looks pretty good. Organs are developing appropriately, but the baby's size is small. Also, the overall tummy measurements are too big. You have a low placenta, and we'll need to keep watching this. I'm going to have you come back in eight weeks to recheck the baby's size and the position of your placenta."
I fumbled with my words but finally stuttered, "Oh. Oh. Okay. Is there anything different I should be doing?"
"We've found that women who rest on their left side can improve the blood flow to the placenta. So when you are resting or sleeping, use your left side. Just eat well and take it easy. We'll see what happens in eight weeks."
There it was. It was the beginning of our journey. We had no idea what was about to unfold for our baby.
For the next eight weeks, I did as instructed. I often wondered if I was actually helping my baby to grow. I hoped so. At the next ultrasound, the results again were not great on the baby's growth, but my placenta had grown up and away from my cervix. I also shared that I was now swelling off and on. My hands were chubby. My face was puffy, and, well, I no longer had ankles. Dr. C said, "Lots of women swell when pregnant. Your blood pressure is normal, and you don’t have any protein in your urine."
I'd have to come back in four weeks to recheck the baby's progress. Meanwhile, I began to have headaches off and on. The swelling worsened, but finally I didn't feel nauseous anymore. That was a blessing as all of the rest was unraveling. I prayed and hoped for the best.
At 32 weeks, my stomach had begun to pop out a bit. I waddled a little, and my doctor said that the baby's growth was worse. The baby was approaching falling below the third percentile for weight. "Why do you think this is happening Dr. C?" I inquired.
"Your placenta is not working well. We call this intrauterine growth restriction. This happens sometimes. I’d like you to come back every 3-4 days now. We’re going to do an ultrasound and biophysical profile at each visit."
As I heard this, I wondered when I would really feel what he was telling me. It occurred to me that I should probably feel like crying, but all that I felt was numb. Charlie looked very concerned, but he remained very quiet. I could tell he was pleased with a plan of action to watch the baby. Having grown up with an obstetrical nurse for a mother, I knew what this meant. Dr C just wasn't saying it yet. Our baby was getting into trouble and would likely come early. When I returned home that day, I laid down to my left side and prayed for the health of my baby. I was tired, swollen, hot, and generally uncomfortable.
Within two sets of ultrasounds, I was placed on complete bed rest. The swelling was throughout my body and into my brain. My teeth felt very tight inside my gums, and I could feel my pulse against my teeth. Light was painful to my eyes, and straight lines appeared wavy. At one point, small little fireballs raced across my field of vision. I thought, "What the heck was that?" I blinked in response, but I could see the fireballs even with my eyes closed. As fast as they came, they were gone.
A few times, an uncontrollable twitch jerked my head to the left. I had no idea what had happened, but it stopped. My mom had begun calling me daily from Chicago where she lived. When I told her what happened to my head, she replied, "Jen, I think you are getting preeclamptic. I want you to tell Dr. C what happened. Please hang up now and call him." I argued with her, "Mom, he never said he suspects preeclampsia. My blood pressure is fine, and I have no protein." She calmly replied with love in her voice, "Hon, I know he didn't say those words, but you're having some issues. Tell him. It can't hurt to tell him." My emotions were reminiscent of being a teenager again. I felt rage as my mom's concern became my reality. Why couldn't I just have a normal experience? Why? Why my baby? I didn't understand that my uncontrollable emotions were also a sign of my central nervous system faltering. I didn't get that I had been experiencing small seizures. I couldn't process information as my normal self. I had no inhibitions. Whatever came to mind is whatever came out of my mouth.
As I got sicker, so did my baby. Eventually, it was time to remove the baby from the comfort of my womb to begin the process of ending my preeclampsia. My health was failing. My kidneys were shutting down, and my blood pressures were stroke worthy. I had been hooked up to an IV of magnesium sulfate, was wearing an oxygen saturation monitor on my left index finger, and had an oxygen mask strapped to my face. They were inducing me except that my body wasn't responding well. After nearly 24 hours, I had only dilated to 1 centimeter. Charlie, my mom, and my good friend, Shanna, were with me. Suddenly, my fetal heart monitor began to alarm. My mom instructed me to flip over onto my right side. The alarm kept ringing. I wondered if my baby would die inside of me.
I was wrong. My beautiful Grace Ann was delivered by c-section soon after the alarms began to ring. She was small for 34 weeks gestation but she cried and wailed. I was so relieved to hear her cry. The neonatologist assessed our precious miracle, and briefly allowed my mom and Charlie to bring Grace to my place on the OR table. She was wrapped in a blanket and already had a hat on her head. She squinted under the lamps of the operating room table. As fast as I kissed her forehead, Charlie tucked her inside his arms and rushed off with the team to the NICU.
Nearly three days later, I was finally able to visit Grace for the first time in the NICU. My health status prohibited moving me outside of a dark room and an IV of magnesium sulfate prevented eclamptic seizures. By the time I got to the NICU, Grace’s color was pumpkin orange. She was hooked up to a CPAP machine to help her breathing, and she fretted and squirmed inside her incubator. Unfortunately, I couldn't see her. My vision had been impaired due to hypertensive retinopathy. Essentially, my blood pressure had gotten so high that blood vessels had burst inside my eyes. Disappointed, I held her tiny hand, and tears streamed down my cheeks.
It was just the beginning of our journey as parents of premature babies and of children with a genetic disorder called Alpha-1 Antitrypsin Deficiency. I’ll share more of our journey along the way with you. In the meantime, I'm Jen. I survived severe preeclampsia and temporary blindness twice. I've been a NICU mom twice.
My children are miracles. Their lives are not guaranteed. Their presence in my life reminds me to enjoy life's little interactions. In those spaces is where God's grace shines.
My Grace is now six years old. She has a younger sister, Meghan, who is nearly four. Meghan was born a micropreemie. Both of my daughters have Alpha-1. I'm mom to the Alpha Girls. :)
This post introduces my fellow participants of that carnival to my story.
At my 20 weeks visit, the ultrasound technician pressed down on my stomach and rolled the wand through the warm jelly. I was excited and straining my eyes to see the grainy images coming across on the monitor. Every so often, I was able to identify my baby's body parts. Colleen, the technician, would say things like, "Here's the heart. That is what we want to see. Nice blood flow. Nice strong beat." My husband, Charlie, looked elated to see our baby growing inside of me. "How big is the baby?"
Colleen replied, "I'll let the doctor go over that with you in just a little while." When it was all finished, she handed me two black and white pictures. We made our way back to Dr. C's office and sat down on the other side of his cherry desk. Charlie inquired, "What do you think?"
I replied, "I'm not sure. I'm nauseous from her pressing on my stomach so much." The pregnancy was really weighing on me. I had always thought that I’d begin to feel better by the midpoint, but it hadn't come yet. I was disappointed. I wanted to be one of those glowing mamas-to-be.
Just then, Dr. C came into his office and sat down behind the desk. He picked up my chart, and began to review the images one-by-one. I noticed that he stopped on one and carefully inspected it, but then moved along to review the others. I was looking for clues to how he felt my baby was doing. His body language revealed something wasn't quite right.
"The baby looks pretty good. Organs are developing appropriately, but the baby's size is small. Also, the overall tummy measurements are too big. You have a low placenta, and we'll need to keep watching this. I'm going to have you come back in eight weeks to recheck the baby's size and the position of your placenta."
I fumbled with my words but finally stuttered, "Oh. Oh. Okay. Is there anything different I should be doing?"
"We've found that women who rest on their left side can improve the blood flow to the placenta. So when you are resting or sleeping, use your left side. Just eat well and take it easy. We'll see what happens in eight weeks."
There it was. It was the beginning of our journey. We had no idea what was about to unfold for our baby.
For the next eight weeks, I did as instructed. I often wondered if I was actually helping my baby to grow. I hoped so. At the next ultrasound, the results again were not great on the baby's growth, but my placenta had grown up and away from my cervix. I also shared that I was now swelling off and on. My hands were chubby. My face was puffy, and, well, I no longer had ankles. Dr. C said, "Lots of women swell when pregnant. Your blood pressure is normal, and you don’t have any protein in your urine."
I'd have to come back in four weeks to recheck the baby's progress. Meanwhile, I began to have headaches off and on. The swelling worsened, but finally I didn't feel nauseous anymore. That was a blessing as all of the rest was unraveling. I prayed and hoped for the best.
At 32 weeks, my stomach had begun to pop out a bit. I waddled a little, and my doctor said that the baby's growth was worse. The baby was approaching falling below the third percentile for weight. "Why do you think this is happening Dr. C?" I inquired.
"Your placenta is not working well. We call this intrauterine growth restriction. This happens sometimes. I’d like you to come back every 3-4 days now. We’re going to do an ultrasound and biophysical profile at each visit."
As I heard this, I wondered when I would really feel what he was telling me. It occurred to me that I should probably feel like crying, but all that I felt was numb. Charlie looked very concerned, but he remained very quiet. I could tell he was pleased with a plan of action to watch the baby. Having grown up with an obstetrical nurse for a mother, I knew what this meant. Dr C just wasn't saying it yet. Our baby was getting into trouble and would likely come early. When I returned home that day, I laid down to my left side and prayed for the health of my baby. I was tired, swollen, hot, and generally uncomfortable.
Within two sets of ultrasounds, I was placed on complete bed rest. The swelling was throughout my body and into my brain. My teeth felt very tight inside my gums, and I could feel my pulse against my teeth. Light was painful to my eyes, and straight lines appeared wavy. At one point, small little fireballs raced across my field of vision. I thought, "What the heck was that?" I blinked in response, but I could see the fireballs even with my eyes closed. As fast as they came, they were gone.
A few times, an uncontrollable twitch jerked my head to the left. I had no idea what had happened, but it stopped. My mom had begun calling me daily from Chicago where she lived. When I told her what happened to my head, she replied, "Jen, I think you are getting preeclamptic. I want you to tell Dr. C what happened. Please hang up now and call him." I argued with her, "Mom, he never said he suspects preeclampsia. My blood pressure is fine, and I have no protein." She calmly replied with love in her voice, "Hon, I know he didn't say those words, but you're having some issues. Tell him. It can't hurt to tell him." My emotions were reminiscent of being a teenager again. I felt rage as my mom's concern became my reality. Why couldn't I just have a normal experience? Why? Why my baby? I didn't understand that my uncontrollable emotions were also a sign of my central nervous system faltering. I didn't get that I had been experiencing small seizures. I couldn't process information as my normal self. I had no inhibitions. Whatever came to mind is whatever came out of my mouth.
As I got sicker, so did my baby. Eventually, it was time to remove the baby from the comfort of my womb to begin the process of ending my preeclampsia. My health was failing. My kidneys were shutting down, and my blood pressures were stroke worthy. I had been hooked up to an IV of magnesium sulfate, was wearing an oxygen saturation monitor on my left index finger, and had an oxygen mask strapped to my face. They were inducing me except that my body wasn't responding well. After nearly 24 hours, I had only dilated to 1 centimeter. Charlie, my mom, and my good friend, Shanna, were with me. Suddenly, my fetal heart monitor began to alarm. My mom instructed me to flip over onto my right side. The alarm kept ringing. I wondered if my baby would die inside of me.
I was wrong. My beautiful Grace Ann was delivered by c-section soon after the alarms began to ring. She was small for 34 weeks gestation but she cried and wailed. I was so relieved to hear her cry. The neonatologist assessed our precious miracle, and briefly allowed my mom and Charlie to bring Grace to my place on the OR table. She was wrapped in a blanket and already had a hat on her head. She squinted under the lamps of the operating room table. As fast as I kissed her forehead, Charlie tucked her inside his arms and rushed off with the team to the NICU.
Nearly three days later, I was finally able to visit Grace for the first time in the NICU. My health status prohibited moving me outside of a dark room and an IV of magnesium sulfate prevented eclamptic seizures. By the time I got to the NICU, Grace’s color was pumpkin orange. She was hooked up to a CPAP machine to help her breathing, and she fretted and squirmed inside her incubator. Unfortunately, I couldn't see her. My vision had been impaired due to hypertensive retinopathy. Essentially, my blood pressure had gotten so high that blood vessels had burst inside my eyes. Disappointed, I held her tiny hand, and tears streamed down my cheeks.
It was just the beginning of our journey as parents of premature babies and of children with a genetic disorder called Alpha-1 Antitrypsin Deficiency. I’ll share more of our journey along the way with you. In the meantime, I'm Jen. I survived severe preeclampsia and temporary blindness twice. I've been a NICU mom twice.
My children are miracles. Their lives are not guaranteed. Their presence in my life reminds me to enjoy life's little interactions. In those spaces is where God's grace shines.
My Grace is now six years old. She has a younger sister, Meghan, who is nearly four. Meghan was born a micropreemie. Both of my daughters have Alpha-1. I'm mom to the Alpha Girls. :)
Wednesday, April 23, 2008
March for Babies
Most of you are aware that both of our daughters, Grace and Meghan, were born prematurely. Gracie was our "biggest" baby born at 34 weeks weighing 3 pounds, 14.5 ounces. Meghan was our littlest peanut born at 27 weeks weighing in at 1 pound, 9.5 ounces. Severe preeclampsia caused their early births. Every day 1 in 8 babies born in the U.S. arrives too soon. Premature birth can happen to any pregnant woman. It is a serious, common, and costly problem. The March of Dimes is leading the campaign to reduce premature birth by supporting research and by educating the public and health care providers.
The effects of prematurity last longer than past hospital discharge, and both of my daughters experience the under recognized side effects of prematurity every day. This Saturday, April 26, 2008, my husband, Charlie, and I will be proudly walking with our miracles in the March of Dimes March of Babies walk. I would be honored if you would consider a donation to our fundraising efforts. Thanks for your consideration. We appreciate it more than you could ever know.
Please help by donating today!
www.marchforbabies.org/alphagirls
The effects of prematurity last longer than past hospital discharge, and both of my daughters experience the under recognized side effects of prematurity every day. This Saturday, April 26, 2008, my husband, Charlie, and I will be proudly walking with our miracles in the March of Dimes March of Babies walk. I would be honored if you would consider a donation to our fundraising efforts. Thanks for your consideration. We appreciate it more than you could ever know.
Please help by donating today!
www.marchforbabies.org/alphagirls
Friday, April 18, 2008
Jen
When I look at this child, I can say without a doubt that I'm filled with emotion. I guess I'm most overwhelmed by the delicate beauty I see. Her skin has a soft, peachy, glowing color, and her light-red hair hugs the contours of her faces and falls gently to her shoulders.
Upon closer look, I see large violet-colored eyes with black eyelashes, which seem almost artificial. Above her eyes are the most distinctly arched dark eyebrows I've seen on one so young. I think of all the time I spend trying to achieve what this child has naturally. Her nose is small on a thin little face. The mouth is small too, with thin pink lips that turn up quickly into a smile as I speak to her. As she lifts her head, I see a distinctly square chin, which seems to point outward as she gives me an impish grin. I look beyond her smile as she jumps and runs on thin long legs. She lifts her arms up and down as she runs and relishs the fact she can snap her long fingers.
As this child grows and develops, I see more than physical changes. A budding personality is emerging. She has qualities of both her parents. I'd like to say only their good qualities, but this would be deceitful. I can say she projects a truly genuine personality that's all her own. There is nothing tomboyish about this little girl. She loves adorning herself with jewlery, sweet smells, and frilly dresses. Of course, she will not accept just anything. Her dresses must be red, with ties in the back, and especially not itchy. The curt denial of anything but her desires might result in a freeze over Brazil. She can stand by the mirror for hours combing her hair and admiring pigtails one day and the next refuse a combing altogether.
She thinks ballet classes are just great, but loves rough-housing with her daddy (as long as it's not too rough). Her quick change from bubbling giggles to torrents of tears always signals the end to rough games for her. How she loves to play silly, but her intense pride in doing projects well can be almost overwhelming. The look on her face will tell if too casual a reply about them has been given.
Her sensitivity to others is so mature. A quick kiss to her sister's hurt knee or a gentle "It's all right." come so easily from her, but if called to her attention, she lowers her head in quick embarassment. A moment later, though, she lifts her head and shows a wide grin, and I know everything's all right. She has appreciated my noticing.
I could go on and on about this little beauty, but that might be bragging. For you see, my mother love is showing through because this little girl is my firstborn, Jen.
Guest Writer: Sherry, dated 11/23/1977
********************************************
I guess my writing abilities came from my mother's side. :) I found this description inside my baby book today. I was 5 when she wrote it. I hope my writings inspire my girls when they are old enough to appreciate them.
Upon closer look, I see large violet-colored eyes with black eyelashes, which seem almost artificial. Above her eyes are the most distinctly arched dark eyebrows I've seen on one so young. I think of all the time I spend trying to achieve what this child has naturally. Her nose is small on a thin little face. The mouth is small too, with thin pink lips that turn up quickly into a smile as I speak to her. As she lifts her head, I see a distinctly square chin, which seems to point outward as she gives me an impish grin. I look beyond her smile as she jumps and runs on thin long legs. She lifts her arms up and down as she runs and relishs the fact she can snap her long fingers.
As this child grows and develops, I see more than physical changes. A budding personality is emerging. She has qualities of both her parents. I'd like to say only their good qualities, but this would be deceitful. I can say she projects a truly genuine personality that's all her own. There is nothing tomboyish about this little girl. She loves adorning herself with jewlery, sweet smells, and frilly dresses. Of course, she will not accept just anything. Her dresses must be red, with ties in the back, and especially not itchy. The curt denial of anything but her desires might result in a freeze over Brazil. She can stand by the mirror for hours combing her hair and admiring pigtails one day and the next refuse a combing altogether.
She thinks ballet classes are just great, but loves rough-housing with her daddy (as long as it's not too rough). Her quick change from bubbling giggles to torrents of tears always signals the end to rough games for her. How she loves to play silly, but her intense pride in doing projects well can be almost overwhelming. The look on her face will tell if too casual a reply about them has been given.
Her sensitivity to others is so mature. A quick kiss to her sister's hurt knee or a gentle "It's all right." come so easily from her, but if called to her attention, she lowers her head in quick embarassment. A moment later, though, she lifts her head and shows a wide grin, and I know everything's all right. She has appreciated my noticing.
I could go on and on about this little beauty, but that might be bragging. For you see, my mother love is showing through because this little girl is my firstborn, Jen.
Guest Writer: Sherry, dated 11/23/1977
********************************************
I guess my writing abilities came from my mother's side. :) I found this description inside my baby book today. I was 5 when she wrote it. I hope my writings inspire my girls when they are old enough to appreciate them.
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.
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