I have known for some time now that Liam’s Ocular Albinism somehow came from his mommies genes. Something in my DNA make up has given my sweet boy this condition, this “disability” (my thoughts on that word use later). All the research has pointed back to me and my genes as the OA source. Yes there is still a slight chance that Brian and I both are carriers for this condition but from what I understand it is highly unlikely. Needless to say when the genetics counselor meets with us this coming week and “breaks the news to me” it will not come as an unexpected surprise. I remember so clearly the thoughts that swam through my head the first few days as we waited for Liam’s diagnosis from ACH…
Did I give this to my child?
Was it something I did or ate during pregnancy?
Was it something that I didn’t do during pregnancy?
I sat the first night holding my sweet boy not wanting to put him in his crib. What if he can’t see, when he wakes up how will he know I’m still here? Will the dark scare him? Should we bring in more nightlights? I can’t leave him in here alone in this big crib!
That weekend everything changed, it was like our world flipped upside down and started over. We had to question everything we did up until the appointment (and sometimes we still do) to make sure we adapted our actions to fit a blind child’s needs. All weekend long one of us was with him never leaving him alone for a moment. Then I remember on the drive to the appointment that fated morning, having a distinct calm wash over me and for no reason at all (because I suck at recalling bible verses to fit a certain situation while in the certain situation or asked for one for someone in a given situation) a verse was placed on my heart and my mind recalled it word for word. I had to pull out my iphone and search the verse on my Bible App to be sure I had recalled it correctly, and I had.
As he went along, he saw a man blind from birth. His disciples asked him, “Who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in his life.” John 9:1-3
That verse has stuck with me for the past 8 months, always on the front of my mind with every challenge we face with Liam’s condition, reminding me that, no matter what, this did not only come from me and my genes, this came straight from God to fulfill a bigger and better plan for Liam’s life and I believe without a doubt that no matter the difficulties and challenges it may bring in life for him he will use this to glorify God in some way. It will continue to stick with me as a beacon of light in the dark as we head to genetics to discuss all the scary possibilities for Liam, for our future children, and future grandchildren. So the genetics counselor can tell me nothing that I cannot handle. I may come home repeating this verse over and over for days on end but it will be/has been my rock during this time, a promise straight from God for my son’s little life. And I will not forget it.