Wednesday, December 16, 2009

Little Heart

My first heart is the smallest heart around me. At least in some ways. In others, it may be the biggest heart I have ever met.

My oldest daughter is my "special needs" child. At 12, she is among the older members of the population to have been born with and survived the congenital heart defect known as HLHS. (For more detailed info look here: ) In layman's terms - the left two chambers of her heart did not fully develop before she was born but the right side did. Her first open heart surgery (Norwood) came at 9 days of age, then her second (Glenn) was at 6 months, and her last major one (Fontan) was at 4 years. All this was a three step procedure to enable the heart to pump with two chambers instead of four. It's really rocket surgery. The last major procedure she went through was last January - a heart cath to add a few stints to improve overall blood flow.

Other than that we have been so incredibly blessed to have had a pretty smooth time of it. Most moms, and indeed most people, never need to learn about the detailed physiology of the heart or what the common side effects are of most heart medications, or even what a stint sounds like through a stethoscope. I am, by far, not an expert. I do a lot of research when I can and I have contacts with several parents who have children born with the same condition. I can say that I have collected a lot of different pieces of information about HLHS and I am willing and eager to share that knowledge as well as my personal experiences. I have found that talking about this and sharing stories, fears, challenges, and triumphs is the best sort of therapy there could be.

Something I am blessed to have beyond all of that is a big family, and a whole heap of history with kids (both mine and others.) I have knitted this all together in a personal way to try and keep some sanity about my life. So far it seems to work out pretty well for us. Our kids are not a huge embarrassment in public (often) and I can describe them as "good kids" from time to time. They all make good grades and haven't committed any felonies (that I am aware of) so at this point I think I am doing ok.

Right now my oldest is hitting the "tween" stage. She is not yet a teenager, but no longer willing to order off the kids menus. To see her come this far is just awe-inspiring. We have avoided many of the health problems and developmental issues that many children with Congenital Heart Defects are faced with. She has only been hospitalized a few times for illnesses not related to her heart defect. As long as we tackle cold and flu season with plenty of rest and lots of hand soap (as well as staying away from malls, churches, gatherings of 3 or more strangers,) we do alright. She was an early walker (I wouldn't wish this on my enemies,) an early and prolific talker (I have invested in really good earplugs, and an excellent cell phone plan,) and she is extremely intelligent and smart for her age ("Gifted and Talented" is school-speak for "Registration of Future Evil-Geniuses.")

Because of her birthday she is "young" for her grade compared to many of her peers. Her parents and their families are also rather short in stature, so she was never destined to play basketball, anyway. Chances are she would not be any bigger or taller than she is today even if she were born with a whole and healthy heart. The HLHS just makes it seem like a bigger issue for her.

Really it is, even though we try our hardest not to make it that way. When she was first born and she was still in the ICU, waiting for her first surgery, I remember vividly looking at all the tubes and machines and nurses. This was my first few days as a parent and nothing was normal about it. Not the baby, not the birth, not even the pregnancy (maybe I'll explain that later) and things were going to get even more weird as the days rolled on.

Everything was so much harder than it should have been to begin with. There were wires and monitors hooked up all over her. She couldn't breathe room air because it was too rich in oxygen for her little heart, so we had to keep her in a hood for or keep her close to a hose/mask so she could breathe the right levels of whatever she was supposed to have. Snuggling her was very difficult and my father in law was so nervous that wouldn't even attempt to touch her for several days. Even nursing was a torment for both of us - she was fed with preemie nipples when I wasn't around and I had never nursed a baby before so I didn't know how to help her learn. But, I was determined and we both figured things out, although it was very painful for awhile (at least for me it was - she had a feeding tube and got fed while she was sleeping if she wanted.)

I had been prepared by all the doctors to expect a sickly child who would need help to achieve developmental milestones in a timely manner - if she survived at all. That was not a scenario that I was going to accept. I made a decision then that no matter what the future might hold for my new family, we would always treat our child (and eventually children) as if they were not limited by anything. That they would make the choice on their own to be restricted or set free. I would make whatever concessions that were necessary for her health and well-being, but I would not raise a child to be a victim of their condition or illness.

I know I was a bit naive. Over the past 12 years I have had to make adjustments and redefine everything I thought I knew about kids up to that point. Nothing could have prepared me for the pint sized ball of energy I was about to raise. ("They will pace themselves and they won't overextend themselves," the doctor said. Hah!) I didn't know that I would have to spend more time focusing on her diet and behavior than I would have to on her heart condition. (Remind me sometime to tell you about the food related temper tantrums or the weekly "talks" with her fourth grade teacher.) That's not to say that it was easy dosing a toddler three times a day - every day - and sending them to daycare hoping and praying that the teacher is intelligent enough to read instructions (occasionally, they weren't.) It only took one case of hives to burn into my skull that you never - ever - give a medication to her unless it has been triple checked by the pediatrician, the pharmacists, and the cardiologist. As crazy as it sounds, her reaction to Red 40 food dye has made a bigger impact on our daily lives than her heart defect has. Well, that and the ADD, and excessive chattiness that defines her, and the intolerable goofiness that comes from being my daughter. (Don't even get me started on the topic of potty training!)

Really, though, we have been blessed with a pretty "normal" life. Well, I guess "average" would be a better description. Well, actually in many ways we have an "above average" life. I guess what I'm trying to say is that our life isn't like anyone else. Not even remotely.

The biggest difference, I would say, is that we have tried to teach my daughter - and her sisters - that nothing separates her from anyone else, unless she decides it does. I insist she do chores and put away her own laundry and bring home passing grades and not set the dog on fire or cut her sisters' hair while they are sleeping. You know - the basics.

I tried to imagine what I rules I would make if she didn't have a heart condition and make adjustments to that if I needed. She has always risen to the challenge and exceeded our expectations. What I didn't realize is what an impact it would make on a kid to tell them "I know you will do your best and I will love you no matter what that 'best' may be," instead of "It's ok not to work as hard as you can because you're sick and you shouldn't have to." What I got was this amazing little spunky thing who is headstrong, and stubborn, and argumentative, and sharp as a tack. I would much rather have that, than a child who has become a victim or a martyr in her own mind.

My little girl will stand up to boys twice her size and two years older if she thinks they are wrong and she is right. She is known as the Elevator Guard. If you are not taking the stairs, you had better be sick, Buster, or she will have your number! She makes her own path and is confident going her own way. When every other little girl wanted a white pony for Christmas, she wanted a RED one. When someone is being picked on - especially if they are considered "special" - she simply can not tolerate it. She doesn't consider herself "special" but she knows how it feels to be treated that way and she can't stand to see that kind of discrimination.

Of course, it isn't always as easy as all that. She is getting to the stage where she desperately wants peer approval. What 7th grader doesn't want to have lots of friends and be envied because of her cute boyfriend? But she is more likely to stand up to someone than let them run her down, even if it makes her less popular. She positively hates to be picked last, but she's just so...little, that it inevitably comes down to that. (Being genetically predisposed to be a klutz doesn't help either. Ask me. I'll tell you.) She loves to read, hates Math, agonizes over the "perfect outfit" to wear to a party. She has the same fights with her best friend that every one else does. She gets razzed because she hasn't kissed a boy even though she has had the same "boyfriend" for over year. (Nice kid. Boy scout, good family. Passed the background check. We have him followed.)

The most amazing part of it is that these are all things average girls and boys deal with when they turn 12. It isn't until you really look closely that you might even suspect she has more to deal with than whether or not she should wear the pink sparkly lip gloss or the gold sparkly one. She is starting to get to the point where her condition is actually limiting her activity on a daily basis. She takes a regular gym class, but sits out when she is tired. It gets her goat to see all the other girls running up and down the gym chasing a basketball while she is sidelined because her face is white and her lips are blue from exertion. The subject of her heart doesn't really come up much - even in gym when she gets dirty looks for walking instead of jogging. So often she will mention to a friend that she has to go the cardiologist or that her chest hurts from the wires keeping her sternum together and they will be shocked because they have known her for two years and never knew she was physiologically any different.

But, there is something about her and her relationships with others that is just... different. Bigger. Deeper. It is instantly recognizable. She is generous to a fault and more aware of others than a typical tween is. Even as a baby she wanted to comfort other babies that were crying instead of joining in with the wailing ("Why baby crying, Mommy? Go help!"). For someone with such a small heart, she really has a big heart. In 4th grade, I found out she had been giving speeches- on her own - to encourage donations to the American Heart Association during their annual Jump Rope for Heart drive. Last month, she wanted to save the animals (no word yet on just how...) Last week she wanted to start a petition to have the elevator code changed to cut down on unauthorized use by healthy kids. This week, she went to the local military base with her father, grandparents, and sisters to help host a holiday dinner for the soldiers stationed on base and their families. Many of her past teachers stay in contact to see how she is doing because she just gets under your skin that way, I guess. I have even gotten calls from friends-of-friends who met her a few times and used her as inspiration to help them get through their own trials.

How do you live next to someone like that? How can you have this celebrity level personality in your house all the time and not feel inferior, at least sometimes? My goal was to let her live as normal a life as possible. What I got was a child who turned her tribulations into an extraordinary personality.
She has more than enough heart to go around - no matter what the x-rays say.

1 comment:

  1. She IS an was such fun to talk to her.