When Christopher was first diagnosed with LCHADD I was still quite sick. Those first three months of his life there was not much room in my daily existence to have any emotions about his disorder. Rather, my focus and concentration centered around my physical healing so I could help Ryan care for our son. I recall the first night I was well enough to feel anything about Christopher having LCHADD; it hit me hard all at once. He was a little over three months old and we were listening to Andrea Bocelli (a beautiful blind opera singer) and I started to ball. I was angry...angry that he had a metabolic disorder and angry that there was so little known about long-term care/ life expectancy. I was sad that my innocent son had no choice in the matter...that he would have to be a fighter at such a young age...that there was a high propensity that he would lose his sight. Then there was the guilt. LCHAD Deficiency isn't random...(gulp) a part of me gave this to my son (sob). And so started my grief process, and acceptance of having a child with a chronic health condition. I knew, deeply, that we would be fighting this battle together...all three of us...Ryan, Christopher and I.
As Christopher grows, I find myself thankful (as I pull my hair out) when Christopher experiences those challenges that any two or three year old experiences. I find that it is this odd balance of trying to be in the moment with him as much as possible, educate myself about his condition and studies, and process the unknown that accompanies his condition. I find that I carry so many emotions with me, and although I can force some into dormancy for awhile... illness, muscle breakdown and doctor visits can bring these emotions back to the surface. I realize that for all kids there is a certain level of unknown and that life is fragile for everyone to a certain degree. Yet, I think this reality is a little easier to push out of our minds, when a child doesn't have a chronic condition. It is the reality of our own mortality that sits too close to home these days...and yet we can't give up hope...we won't!
I think about these things while I am training or while Christopher and I are out hiking. And at the end of these thoughts I always come back to, "What do you hope for, for Christopher?" And I suppose there are a lot of things I hope for that any parent would hope for, for their kid...but somehow it feels a little different. I hope that Christopher will not lose his laugh and excitement for life. I hope that he will see the world differently and challenge people's ideals or notions of
how things are "suppose" to work. I hope that he will love who God has created him to be and that he will embrace the beauty of all that surrounds him. I hope that he will continue his excitement to expand his mind, and explore his environment. I want him to be comfortable in his own skin. I want him to love nature and creation. I want him to be able to do what excites him (I worry about this at times because he is so athletic...loves basketball already...I hope that he will have the stamina to play sports if he wants to...the LCHADD could effect this.). I hope that he will embrace his LCHADD, his special diet, and seek to be an advocate and example to his peers. I hope that more doctors will desire to work in the field of metabolic conditions and that my son will have continued health care as he grows.People have asked me if I think that LCHADD will be cured. I suppose that I am not really sure how the science around that would work, because LCHADD is a genetic condition that occurs on a cellular level throughout the body. I know that research is the beginning and that there is so much hope for children with LCHADD, that they can have full lives, the more that scientists learn about the mitochondria and how fatty oxidation works. I hope that research will change the progression of the vision loss that these kids experience. I hope these kid's diet will be so effective that they will be able to participate in life in a way that they choose. I hope that doctors and clinicians who have never heard about LCHADD will hear about it, and so when a child is sick and in the hospital, treatment will be easier for families, patients, and clinicians.
And so I suppose we hold a lot of hope in our family. Our hope comes from each other, God and friends like you who love and support our journey. And so we hope on...
