My 2nd child, Ella (now 7), was born with a somewhat rare illness called biliary atresia, but we didn't know it until she was about 6 weeks old. Biliary atresia is a disease affecting the biliary tree (the duct work that runs from the liver), where essentially, the ducts disintegrate or become blocked with scar tissue or are in some other way rendered useless... meaning that her liver could not drain. So, at 8 weeks old, she had a surgery (a Kasai) to give her some drainage from her liver, but this puts her at risk for liver infection ALL THE TIME. When Ella was little, we had to rush her to Egleston every time she had a fever and most of the time we were in for a 10 day hospital stay. 10 days in the hospital can do a lot to you. It was really hard, and I thank God that it has been a long time since we had one of those. Another bad thing about the surgery, though, is that it isn't a fix all to her problem. Most of the time, a child that has a Kasai still ends up needing a liver transplant. This is either because the liver has sustained too much damage and no longer functions properly, or because the Kasai fails and the liver doesn't drain properly. There are probably other reasons as well, but I'm just giving a general idea of what the disease can do.
When Ella was 6 months old, she started getting a really swollen abdomen, and we were then told that her portal vein had become blocked and that she would need a transplant. She was on the list for a new liver for two years, then her doctors miraculously decided to remove her from the list because she was just that much better. From age 2 to age 6, Ella had almost nothing wrong - was on only special vitamins but no other medications, seemed healthy, but with a bit weaker immune system than others. But now, she is starting to get sick again. I thank God that she isn't as sick as some kids with biliary atresia, but she IS sick. I am starting to accept that.
See, for this whole time, I have never reached out to other families with liver disease, or any families with sick kids at all. I have tried to be strong for her - by myself. People who do not have sick kids do not understand the struggles involved. They don't understand how hard it is to see your child day after day be sick when there isn't a thing that you can do about it. Fear and a feeling of being helpless can very easily take over, and quickly after that, depression follows. Even if these were the only battles that a mom of a sick kid could face, these alone are very hard to overcome - especially if you try to do it by yourself. I have trusted God with all of these things, and He has sustained me, but sometimes I need to see a success story to renew my hope. Or I need to chat with another mom who has endured these things, just to know that I'm not alone.
What prompted me to write this was my fear. Ella had a doctor's appointment last week, and her doctor just basically told us (finally) that Ella will not get better until she has a new liver. He won't list her yet, because she isn't THAT sick, and he doesn't want her to have to have a transplant when she doesn't HAVE to have one yet. We trust him, but it is hard to hear that your child will just have to be sick indefinitely. See, she has advanced liver disease. Her liver is small and her arms and legs are skinny. Her abdomen is enlarged, and will probably stay that way forever. She doesn't absorb fat or fat soluble nutrients, and eating any amount of fat makes her have diarrhea. She is very tired every day and needs way more rest than the other kids. She has to have 3 different special (and expensive) vitamin supplements every day, PLUS a special powder to add in more fat (that she can hopefully absorb), plus extra calories by way of extra snacks. I'm not in any way complaining - she is worth every bit of extra work, and more besides - but all this extra stuff weighs on you. I love homeschooling, but even that decision was made because of Ella. Every time she gets around someone who is sick, she gets sick. In public school, she was not able to be there a lot. If she is sick and homeschooled, she can still do her school work and not fall TOO far behind. I stay really busy, so sometimes I just don't even think about how I feel about something, but the other day after the appointment I again realized that I was afraid - and I have been that way since we found out she was sick. I have been afraid to open my heart up all the way, afraid to accept her illness, afraid to tell anyone else that I was afraid, even. So here it is: I am afraid. I am scared. I have fear. Sometimes, that fear is stronger than anything else in the world, and it paralyzes me. It affects my decisions way too often, influences how I reach out to others, and wreaks havoc in my life. I need to overcome it, and I'm hoping that this was a good first step. I'm also hoping that this will prompt other moms of sick kids to speak up about their struggles. You can't do it alone, and your story could help someone else have hope. And, on a very small level, I am hoping that this will help you guys understand if I don't post for a while. I'm still getting the hang of blogging, and sometimes it just slips my mind altogether.
I do have a favor to ask, though: If you pray, please pray for our family - especially Ella, but the rest of us as well. Thanks so much!
- Kelly
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| Ella, 8 weeks old, after her Kasai |
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