the first half of my son Alix's story. It has now been 3 years since Alix was diagnosed. Few questions have been answered and now there are more questions than before. He was officially classified with a rare form of Spina Bifda Occulta, although, they say it isn't really accurate because it's more severe than typical occulta cases. He has a heart murmur, underdeveloped muscles, and something causing his hips, legs, and spine to be uneven, but it isn't scoliosis. He has been poked, prodded, undergone a ton of tests, physical therapy, but always has a smile on his face. Even though he gets scared, he is a trooper about it all.
Alix's diagnosis completely changed our lives and changed our outlook as well. No one prepares you for what will happen or what to expect when it comes to dealing with a child who has a medical condition. There is no instruction manual and you have to take it one day at a time.
When my son was first diagnosed, I was consumed with "why him?" Why couldn't this happen to me instead? What did I do wrong for him be born this way? The doctors have to be wrong. This can't happen to my child. But overtime, I knew I didn't cause this to happen. Sometimes things like this just happen. You can't choose who it happens to. I wanted answers because we knew something wasn't right and now that we have them, we would do anything to make it so it wasn't so. The doctors are right and we can't change that fact. Overtime, we have come to accept his diagnosis. No matter how badly we would like to change it ,we can't. All we can do is accept it and take it one day at a time. But still, what I wouldn't give to have it be me instead of him. What I wouldn't give to be the one to see all the doctors and be poked and undergo all the tests and cope with the symptoms.
How do you tell your child they are different? How do you tell your child there's something medically wrong with them? Now that my son is older, he knows his doctors appointments are different than those his siblings go to. Because of all the medical procedures and possibly surgeries he may have to undergo, we had to explain to him he's "different."
When the time came to tell my son about his body, it was very difficult to explain to him in terms he could understand, but it needed to be done. I sat my son down alone, and told him he was made a little differently than other children and because of that he has to see special doctors to make sure he's ok. I didn't expect him to have any questions about it due to his age, but let him know if he had any we would answer them as best we could. I showed him the hole in his back in the mirror for the first time, which he didn't know was there until then. He wasn't scared of it, just mad because it didn't look like the hole in his foot (a week before he stepped on a pencil). He accepted it and went on to play. He clearly took it better than we did, but I know there's only so much he can understand at his age.
My Other Kids
With all of this going on, we also had to explain it to the other children. But, how do you tell them without scarring them? How do you tell them so they don't view or treat their brother differently? We basically told them the same way we told my son but didn't show them the hole. They noticed quite a while ago that Alix sees more doctors than they do, and he has to go to "far away" doctors. They don't know the severity of it, all they know is Alix is a little different than they are, so he needs a little extra sometimes.
When the time comes and he needs surgery, we will bite that bullet when we get there. They are all very helpful to Alix when he can't do something and very compassionate and understanding when he falls or gets hurt. No one wants to have to put this pressure on their children to let them know there's something different with their brother, but it needed to be done. They had already noticed things were different with him, and if we just kept it to ourselves or lied to them about it, sooner or later they would know the truth anyway
What the Future Holds
Life around here, at least for me, has changed over the past 3 years. I don't see my son the same way I used to. I see him trapped in a body he doesn't deserve. He deserves a perfect body because he is perfect in every single way. He is such a happy and carefree little boy, full of energy, and loves life to the fullest. I can't bare the thought of a complication changing him and his abilities. I hate that in someways he can't be just a little boy. I want him to have a normal life and to be able to do normal things, but I know he's going to have to be limited in some areas. But, what can you do about it? Nothing. Plain and simple, there's nothing you can do about it.
Since Alix's diagnosis, our plans for a large family have changed. As any additional children we have could end up with spina bifida, we made the choice to be finished having kids. We got so lucky with Alix and things aren't as bad as they could be. Who is to say we would get that lucky again? But, that raises another worry...how do we explain to him that there's a chance his children could be born with it?
Alix is just like every other little boy now. Most of his challenges go unnoticed by most or are just passed off as clumsy. Many of the physical issues he had are now gone and you would never be able to tell he's any different. Doctors believe he will have a normal life ahead of him, but there is still so much unknown about his form of spina bifida, no one can be certain. All we know is that he will always be susceptible to meningitis and spinal infections. At some point in the future, he will need spinal surgery to have his sacral track closed. He will most likely have some type of spinal infection as he grows older. His heart is good to go but he needs to have it checked yearly. Physical therapy has helped his muscles, strength, and balance and he spends his days being a typical 7 year old boy.
Although his future looks very promising, there are still the nagging worries in the back of our heads. We've had the chance to talk with a few others we have found with the condition and their symptoms have progress quite severely as time has gone on, while others symptoms have dissipated. The unknown for his future is the worst thing of all, so for now we focus on how well he's doing and how lucky we are it isn't worse.
No matter what my son's future holds, all I know is I will do everything in my power to ensure it's the best and most normal life possible for him and for all my children. It can seem so isolating as it's hard to find any answers or anyone to understand, but I've learned you aren't alone. There are other parents in the same situation as you with the same questions and fears, although the diagnosis may be different. I've learned it's very helpful to find these parents for support, because they understand what you and your family are going through.
The journey over the last few years has been physically and emotionally exhausting, as no matter what is going on, you have to put on a brave face to keep your children calm, while you are falling apart inside. Most don't understand just what we've been through as he looks like a normal little boy. No one has seen the tears and fears we've faced, but in the end, here we are. All still standing, all still happy, and all still together.