Over the last two years I have processed the words that were given to us for Matthew, ‘ventriculomegaly’ and ‘hypotonia’. I understand these words, I have researched them and connected with people all over the world who have the same words. I feel like I am somewhat in control of these words.

Recently we got new words and I do not have space in my brain for these words. We have our two words and they make sense to me and I understand every corner of the boxes they fit into. These new words are different, they don’t fit into just one box. These new words I am afraid of. 

I like to be in control and I like to research and understand what the doctors are saying. I am an expert on all things hypotonia and ventriculomegaly related. Gary is better with words than I am, he just doesn’t think they mean anything. For me, they resonate in my brain and I worry. I wish I could be like Gary. He’s right, these words don’t change things, they are just information.

I tell myself that words are just labels… But these labels make me worry, they rob peaceful sleep from me, these words I am afraid of.

My wonderful Matthew, he is so precious. So headstrong and heedless, so smart and mischievous. I wish he didn’t have these words in his little life. 

So what do we do with these words ? I don’t know…. can I put them in a box and ignore them for now? I am not going to lie that is what I want to do! I don’t want these words to consume us and dictate our course. So perhaps I can file them away for the moment and try not to obsess? 

Nobody can prepare you for not being able to fix all the obstacles that are placed infront of your child. Nobody can understand the uncertainty that takes over your heart. Nobody can see the constant worry that follows you everyday.  No one can understand what lengths you will go to help your children. You will try anything at the off chance it will help delete the words. 

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