I know there are several of you who are anxious to hear abut River's trip to the neurologist. I wish I was looking forward to writing about it. I want to tell you that the neurologist was able to give him a diagnosis and that it's not nearly as bad as we had feared. But we don't have a diagnosis and the fear is more present than ever. As I write this I want to make it sound okay. I don't want to bring you down, as I am. But I feel as if I am sitting under a dark cloud and it's hard for me to feel optimistic right now.
So let's go over the facts because that's less emotional for me, and you want to know. River has Microcephaly (small head) and Hypotonia (low muscle tone). He also has cortical vision impairment which seems to be slowly improving. He has reflux which is mostly controlled, and he is still somewhat fussy. If you google 'microcephaly' you'll find a lot of scary stuff. I don't recommend it. The hypotonia can affect his ability to eat, talk, walk. Just about everything we do requires muscle tone. At this moment, I have no idea how I will find the strength to support River and his many needs. Even as I write this, I console myself by saying I do not yet know what those needs are. But I am aware. They may be only physical, or he may have cognitive impairments as well. The idea that I may not be able to connect with my son is devastating. And how long do we have to wait to find out? It's so hard to be patient.
Fortunately all days are not like this. I am usually more hopeful and positive about the future. But today I'm giving myself permission to just be here. The weather is awful, too wet and icy for us to get out on walk. So we're just being cozy. River and I.
1 comment:
Hannah, I am sorry you are going through all of this. I can't imagine how scared you must be for the future. Diagnosis or no diagnosis- you will find the strength within you and support from all the people around you to give River all that he needs. Let me know if you need anything- I'll be there to listen.
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