It has been a little over six months since finding out about Braxton. It’s gotten easier but everyday is a battle. Trying to hide my emotions and act like everything is ok takes a lot out of me.
I don’t want to be that person that everyone feels sorry for. When someone asks me how he’s doing I don’t know if they want the truth or if they are trying to be polite.
How much is too much information? Who do I pour my heart out to and who do I simply tell “he’s doing ok”?
Nobody wants to ask me how I’m doing. Nobody wants to know how the mom of a special needs baby boy is coping with her feelings.
I don’t have anyone to talk to that’s on the same page as I am. Everyone wants to be optimistic. Those people haven’t taken the time to learn about his syndrome. They don’t know the packet from beginning to end like I do.
When I try to talk about all the things he won’t be doing it’s me moving forward. When someone responds with “you don’t know that” it doesn’t help. I need someone to listen. I don’t need false hope. I need someone to see things as they are.
Braxton is coming up on 11 months. He is developing at a slow rate. Dr. Brown has told us several times that he is performing at a development of a four month old. The further we get from four months the harder that is to hear.
I go to bed at night hoping I wake up and everything was just a bad dream or I find myself wishing I could make everything go away.
I love Braxton with all my heart but it’s not fair to him if I were to say I wouldn’t change a thing about him. It’s not fair to him all of the appointments and all of the seizures. None of this is “fair” to him.
I feel like we disappoint everyone. He doesn’t give people the attention they want from him. When someone tries to talk to him he doesn’t want to make eye contact. He doesn’t acknowledge them because he isn’t like other babies. I feel like I owe everyone an explanation.
3 thoughts on “Adjusting to my new roll as a special needs momma”
Your baby boy is beautiful!! I am the grandmother of a four-month old baby girl with 2q24.3 microdeletion.
Everything you say in your blog are the emotions we too are feeling. Of course we hurt for our granddaughter, but also our daughter and son-in-law. I will suggest your site to my daughter with the
thought that she will not feel so alone in this journey.
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The hardest part is feeling alone. There isn’t enough information. Please send her my way!
I am also the grandmother of a seven month old little girl with 2q24.3 microdeletion. Each day we search for more information on this syndrome and can’t help but wonder what went wrong to cause this in this beautiful
baby girl. All that you say about your Braxton is exactly how we feel and struggle with daily. Braxton is a beautiful little boy! Thanks for sharing.