Our genetic test results are back and our world has been turned upside down yet again. Tomas has a rare gene mutation on GRIN1 gene, as far as we know majority of children diagnosed with this mutation have moderate to severe intellectual disability and moderate to severe physical disability. There are couple blogs by parents of children with GRIN1 and all of them are non verbal unable to walk…
When Sara died we grieved for all the things that will never be. Then Tomas was born seemingly healthy we rejoiced again at the future as a family with a child. We never dreamed that Universe wasn’t finished “punishing” us, but it turns out there were many more surprises left for us. We are suddenly grieving again for all that might never be. I have known his diagnosis for four hours and I haven’t stopped crying yet, my head feels like exploding and for the first time in many months I don’t know how I will wake up tomorrow and carry on. When I look at Tomas he seems so perfect, yet all I can suddenly see are his insufficiencies. The lack of muscle tone, his rigid arms and legs, his unstable head, the lack of eye contact…
I’m petrified of the future. I have always had an admiration for parents of children with special needs. I admire them for their strength and perseverance. I don’t know if I have that in me. Right now I doubt how I will cope, how I will cope with each missed milestone. I imagine every single activity I dreamed we will do together, biking, skiing… and my heart brakes again and again.
I thought my last post was dark, but here I’m standing in the middle of emptiness and all I can feel is despair. I want to see a silver lining, but the dark clouds are too thick right now.
ktojoy 