Beautiful Alpha-1 Organ Donation Story

This is an amazingly beautiful story of a woman, just about 1 year younger than me, who received a liver transplant due to ZZ Alpha-1 in 1984. She lost her older brother to Alpha-1, but her story is so beautiful. Enjoy the reminder of life's blessings.

http://www.azcentral.com/arizonarepublic/news/articles/0923transplant0923.html

Perspective

Today, I arrived home earlier than usual because Charlie needed to be at his school for an open house. After he sped off on his motorcycle, I decided to take the girls to our local park to play for awhile. We all got in the van, and quickly arrived at the park.

"Can I go Mommy?" Meghan squealed as I lifted her out of the carseat.

"Go ahead."

Grace jumped out of the side of our minivan, and I clicked the button to lock it up. As I turned around, Meghan's petite legs were trotting up a slight grassy incline. Her tiny rear end was hidden underneath her capri pants, and her long yellow locks bounced with each step. Grace raced behind her and passed her by to beat Meghan to the playset.

It had been a while since I'd been to the park with the girls so I was pleased to see that Meghan could now climb most every part of the playset with ease. Honestly, I still have my moments of doubting her abilities. I know I shouldn't do this, but I can't help but noticing how other kids seem to take their profound agility for granted somehow. I secretly yearn to have kiddos who can "leap a tall building in a single bound." I know that is screwed up, but having been Mommy to two former preemies, it is hard not to think that way. It is hard not to remember that if I hadn't gotten sick, my babies would have been full term agility prone gals, at least that is what I would have given them...a full long ride inside my womb with little to no stress and a peaceful low blood pressure experience. Alas, it was not to be.

All-in-all, today's trip to the park provided me with much perspective. Thank you cosmic energy. Thank you God.

"Watch me Mom!" Meghan squealed as she climbed up the slide in the wrong direction.

"Meghan, you know the rules. We go up ladders and down slides."

A different voice appeared from the top of a platform on the playset. It came from a bulky little boy named Rico who also said, "Watch me Mom! I told you I could do it."

His mom shouted, "Watch out Rico. There is a little girl at the bottom of the pole. Watch out for her." Meghan was standing at the bottom of the equivalent of a fire pole so I guided her out of the way as he jumped on the pole and rode down.

I turned around to find his mom sitting at a picnic table.

"She is so cute. How old is she? Two? Three?"

I responded, "She is 3, but tiny for her age."

"I keep trying to teach him to be careful around girls and that if he is nice that he'll have some girl friends. I mean girl friends not girlfriends."

By this time, Rico had climbed up the platform and was ready to jump down the pole again. "Meghan, please get away from the bottom of the pole. He wants to come down."

"Is that her name? Meghan?"

"Yes."

"That is a beautiful name."

"Thank you. She is tiny because she was born very early. She weighed 1 pound, 9 ounces when she was born. We took her home 79 days after she was born."

"Wow, what happened?"

"I got very sick with preeclampsia, which causes very high blood pressure."

"Oh. She looks great now. I had preemie twins, who were 4 and 5 pounds when they were born."

"Aha, so you know how it goes then," I believed.

"Sort of. I gave them up for adoption because I couldn't take care of three kids. It was so hard to give them up...the hardest thing I ever done. I had them in Utah and the mom and dad were there in the NICU every day with my daughter and son. I was only there until they made me go home after my c-section."

"Wow. You were so brave to make that incredibly generous decision. It sounds like you made the right decision for you."

"I don't know why I'm telling you this. I don't usually tell anyone, but you seem so nice."

"Thank you for sharing it with me. I bet your twins' parents thank God every day that you blessed them with your twins," I meekly responded.

"Yeah. They are a white family, and my twins were biracial. My son had green eyes at birth, and my daughter had brown eyes." I wondered why she felt the need to share that detail with me besides the fact that I have the fairest of fair skin, and she was looking for a way to find some commonality between us.

"Mommy, I want to go swing! Mommy!"

"Hold on Grace! Just a minute! I'm talking to this lady. Hold on."

"It's okay. Let her swing."

Grace raced to a "big kid" swing, and Rico followed her to the other one. Meghan wimpered a bit as I placed her in a baby swing. "I'm not a baby!"

"I know Meghan, but the other swings are being used. You'll have fun on this one."

"Noooo!"

"Yes, Meghan. In just a bit, you can have a turn on the big kid swing." Rico's mom joined us and began pushing him on his swing too.

"My son had jaundice and had to go under those lights to get better."

I pointed to Grace, and said, "She had that too. Those lights work great."

"Their mom sends me pictures on all the holidays, and she sends a video tape on their birthday each year."

"So, you get to see how well they are doing?"

"Yes, but it is so hard. They are so beautiful, and I miss them so much."

"I suppose you'll miss them forever since they are a part of you, but I hope you know that you did a really great thing. You gave your twins two parents who love them, which is a beautiful gift."

"I know. It is just so hard sometimes. I still don't know why I'm tellin' you this."

Grace and Rico had gotten bored swinging and had run off to the playset again.

"Mommy! I want to stop swinging now. Mommy, I'm all done now," Meghan shouted.

I was so immersed in Rico's mom's story that I wasn't hearing Meghan.

"Mom!"

"Oh, alright Meghan. Go slide."

Rico's mom and I continued to exchange mommy small talk until it was time to go. I'll probably never see her again, but I learned a lot from her tonight.

I'm an incredibly lucky person. I have my children with me. I never had to make a decision like Rico's mom did. I have a spouse who loves me, a nice home, my health, and my beautiful children. I have so much for which to be thankful. I don't think I'll ever forget Rico's mom even though I never got her name.

Thank you cosmic energy. Thank you God.

12 years

I was in Oklahoma City this week on a business trip. Having never been there, I wasn't sure what to expect. I was pleasantly surprised to see a beautifully maintained downtown environment. The streets were clean, plants were trimmed, flowers were blooming, and community assistants made sure tourists were finding their ways around appropriately. I'd love to have the mayor of my city tour Oklahoma City. My city saddens me lately in that it is so incredibly depressed.

Anyway, I left my hotel room and walked 4 blocks to the Oklahoma City Memorial. I had wondered how close I would be to the former site of the bombing on April 19, 1995. As I walked along the streets toward the memorial. I kept thinking it was strange to know that such an unbelievable act of violence had taken place on such quiet, well maintained streets where the street signs actually say "Drive Friendly."

I felt slightly queasy upon climbing the stairs.

I wasn't sure what to expect, but I still have vivid memories of the TV footage of a fireman carrying the lifeless body of a small little girl with blond hair out of the site.

On a sprawling green lawn, carefully manicured, were chairs that symbolized all of the victims of the bombing. Upon spying smaller versions of the chairs, I felt the tears well up in my eyes. Those poor children, who were just spending their day in the building's day care center. They must have been so scared. I can't imagine.

I also thought about the individuals who were just sitting at their desks, in meetings, or were just walking by on the street. After reflecting on the reflecting pool, I walked along a chain-link fence which was still full of mementos of the victims. Many of the items were faded, but many of the items were carefully maintained. I guessed that their families come periodically to make sure no one forgets.

Even 12 years afterward, it seems so recent. When the bombing happened, it was the first time I realized, as an adult, that some people have no respect for human lives.

So many more acts of violence have happened since then. My trip to the OKC memorial reminded me that I need to enjoy life in the moment.

But I Want to Cut the Grass When I Grow Up

Grace's understanding of Alpha-1 is exploding now. Her naiveness is fading, and we'll she is one smart cookie. I hope that I can help her believe that she is special because she is an Alpha, but that it doesn't limit her (within reason). This is the hard part of parenting a child with a medical condition...explaining things with kid logic and just enough without giving too much. It certainly is a balancing act. Here is another example of our conversations lately.

While driving down our alley in the minivan, Grace noticed our neighbor cutting his lawn.

"Look Mom! Emma's Daddy is cuttin' the grass. Mom, when can we make the Alpha go away?"

"Honey, we can't make it go away. It isn't like a germ. It is part of who you are, but we are taking good care of you by protecting your lungs from bad stuff."

"Why can't I go outside when Daddy is cuttin' the grass?"

"Well, the lawn mower is kind of stinky, and cutting the grass makes a lot of dust fly around in the air. That stuff isn't good for your lungs Grace."

"But I want to cut the grass when I grow up!"

"Honey, you will be able to cut the grass, but you may wear something called a respirator over your mouth and nose to keep the yucky stuff out of your lungs."

"Oh. How come Daddy can cut the grass? He has Alpha?"

"Grace, remember how I told you that Daddy and I have a different kind of Alpha-1 (we're carriers) than you."

"Uh huh. Well, Daddy can cut the grass because his Alpha-1 is different than yours. Do you know who has Alpha-1 just like you?"

"Uh huh...the Alpha friends (our local support group members)."

"Yes, and your sister, Meghan, has the same kind of Alpha-1 as you do. You can both be special Alpha Girls together. Remember that you can do all the same stuff as the rest of your friends. You just need to keep yucky stuff out of your lungs like nasty cigarette smoke and cutting-the-grass stuff."

"Oh, but I still want to cut the grass when I grow up."

Disenchanted

As I approached the front door of the home, I paused and composed myself. I guessed that I'd have a hard time getting through the meeting. After all, I had decided I needed to tell them I could no longer serve.

I gulped some air, and entered. I walked in the house behind another woman. The individuals in the living room quieted. A few minutes later, we gathered around a large oak table for the meeting. Several agenda items were to be completed. All that I wanted was for the last item to arrive. I wanted to say what I had to say, and get out of there. With much anticipation, I shifted in my chair and managed to gulp down some food. My nerves were on end, and I'm pretty sure my blood pressure was rising.

Eventually and finally, we arrived at the agenda item I anticipated. I informed the group that I'd be stepping down because of some accusations that had been made in regard to me. None of the accusations were true.

Most of the individuals stated that what I was told and believed was simply not true. I couldn't believe what was unfolding in front of me. Even upon confrontation, the truth would not come out. It was disappointing human behavior. Tears kept welling up inside me, and they eventually flowed.

I left, and amazingly, I felt relieved. I had said what I wanted to say...whether they actually heard and believed me, I'll probably never know.

************************************************
Some days, it is simply amazing how human behavior has allowed our species to progress as far as we've come.

As you may know, I've been immersed in the Alpha-1 community since Grace was diagnosed in 2002. I've always believed that this was a good thing to do. Considering my need to understand, gather all the facts, and form an educated opinion of how Alpha-1 can affect my family's life, I initially felt like I had found a new "home" where other community members would understand and welcome me. These precious few would understand, and hold me up in tough times.

Much to my dismay, and possibly because I'm quite naive, I've lately experienced a pure opposite to my former naive beliefs.

Why is it that minority groups feel the need to splinter? Why do we need to align ourselves with one augmentation company over another? Why do we "split hairs" over who is liver, lung, or skin affected by Alpha-1? Why is it that I've supposedly not been in the community long enough to supposedly understand? As if, I'm some young pup to be mentored.

It is an amazing bunch of bull if you ask me.

Why is it that matters? Aren't we all members of the Alpha-1 community? I don't give a flying fig what your phenotype is? I don't care how long you've been diagnosed? You are a member of my community and deserve to be among us.

Instead of banding together into a group with strength and unity, we instead splinter and fracture into he-said, she-said. Gossip becomes "truth" without basis in fact, and emotions rule what would be normally calmer heads.

It doesn't matter what is fact or fiction. We believe what we're told without a frame of reference and embrace the "false" truth. It is a sorry state of affairs.

If this keeps up, our community will crumble under the weight of half understood issues and lies. All that I know is that I'm sick of being accused of things I haven't done. I'm sick of individuals who lie directly to my face. I'm sick of the gossiping. I'm sick of the individuals who only see what they want to see. They'd rather see others unhappy and sour to the idea of one united Alpha-1 community.

Volunteering in my community is becoming less fulfilling. I'm disenchanted and hoping that I can keep my daughters far, far away from this ill will. One thing is for sure. I will do everything in my power to raise helpful, kind, considerate, and respectful future members of the Alpha-1 community.

Those who choose to believe that I have less than pure intentions are wrong...plain and simple.

Another Cousin Gone

Gosh, I'm pretty depressed since I recently found out my cousin, Butch, passed away on June 27th at age 44. I'm assuming his Alpha-1 liver disease is what finally released his soul. How is it that we just found out you're gone???

I hadn't seen him in many years, but it just feels strange knowing he is gone. As a little girl, I remember him hanging out with my uncle David and Butch's older brother, Tony. They would have been teenagers at the time, and they seemed so old to me then. But now I think that Butch was simply too young to die. There are too many Alpha angels in heaven. It just makes me so so sad to know he is gone. How is it that your brother, Tony, is the only one left of your siblings now? How is it that 4/5 siblings are gone from Alpha-1? Sometimes, I wonder...

Butch, I know you joined your mom, Beth, Amy, and Pam. Fly with the angels.

Wow

Grace and I were sitting next to one another on an airplane trip to Los Angeles, CA. I was leafing through one of those "mind candy" gossipy magazines, and I happened upon a picture of Christina Agulera, who is currently pregnant. She was looking quite trendy.

Grace glanced at my magazine, and inquired, "Mommy, how come God sometimes gives teenagers babies?"

I thought, "Yikes! What? Already? She is maturing too fast for my liking."

Since I didn't want to have that conversation on an airplane in close proximity to too many perfect strangers, I said, "I'm not sure Grace. What do you think?"

Grace shrugged and moved onto her next thought.

I dodged a bullet, but for how long?

First Day of School

Tuesday, 9/4, was the first day of preschool for Meghan. She was so proud. "I'm in K3! I'm in K3!"



That day was also Grace's first day of 5 year old kindergarten (K5). It was soooooooooo much easier this year to take her to school since she was already familiar with the routine and surroundings. :) Last year was quite a challenge.



I took the day off of work, and nursed my "babies are growing up too fast" wounds a bit. But, aren't they adorable?