You are my SONshine, my only SONshine

I am going through a whole slew of emotions as we approach Carter’s first birthday. Some are pretty difficult to handle, some are bittersweet. 

Like how he fights to get out of my arms instead of snuggling into me like he used to. I miss that. I remember begging the sleep consultant to help me get him out of my arms and all I want right now is for him to want to be in them. 

I am feeling the loss of what I envisioned for our first year. Milestones hit. Progress made. When in reality, he’s not much different than he was last June. I am trying to come to terms with how to explain to people why his eyes cross or why he can’t sit up or why he doesn’t care about people, when not I, nor any doctor for that matter, know the reason. 

I’m so scared of this birthday. I should be excited and happy to celebrate my sweet baby and I feel like a terrible mother because of how fearful and protective I am of him. 

I am not ready for all the questions or comments. I just don’t feel like I have the correct information. What do I say? 

That’s a question that I’m struggling to answer. How will I react when I get the questions? I’m normally not too emotional, but will I cry? Or will I be combative?

I am Carter’s biggest advocate. I take pride knowing we wouldn’t be near as close to a diagnosis if I wouldn’t have fought as hard as I do. But with no diagnosis, am I a failure? Did I put him through those tests for nothing? Does he hate me? It’s so difficult to know when he doesn’t give me any feedback. 

Most of the time I am convinced he has no idea who I am and that makes me very sad. 

I also need to stop googling. I am way too familiar with genetic and metabolic disorders. I still wake up every morning thinking of this unbelievable situation. 

My life is crazy. Most of me wishes we had a diagnosis, not just to help heal my man, but to help me find a support group with others who understand. I have people willing to listen, but I need knowledge and help from families going through this. 


2 thoughts on “You are my SONshine, my only SONshine

  1. I remember this confusion, heartbreak and frustration all too well. I have a special needs son, but my SONSHINE is now 27. He wasn’t fully diagnosed until almost 7. You are and always will be his biggest advocate — don’t ever feel guilty for that. Always rely on your gut, regardless of what those with degrees may feel. YOU know him more than anyone. And most of all, remember you were chosen by God for this child and this soul to love, raise and nurture. Prayers and blessings to you.

    Liked by 1 person

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