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    His Diagnosis Changed My Life.

    Sep 29, 2018

    I have always wanted to be a parent.

    I played with dolls until I was twelve years old, babysat through high school, and was always the person envying the new moms. I dreamt of what it would be like to have my own children and the mom I would be. I fantasized about it and when I became pregnant those fantasies crystalized as I was going to finally have a child. When I found out I was having a baby boy I was ecstatic. Would he have curly hair or be left handed like me? Would he be good at soccer, tennis, and sports like I am? Would I be his coach? Would he enjoy theater and music? Would I get to go to his concerts? Would he be artistic? Would I get to go to an art show? Would he love working with people like I do, work with his hands, or business like his grandfather? Would he be a doctor, a lawyer, teacher, or a fireman?

    I never imagined that this beautiful life I envisioned for my son would be decimated by a diagnosis.


    I never imagined that I would be a special needs mom.

    My son doesn’t have autism, but he has a life altering medical condition. When he was diagnosed all anyone could do was tell me that I would be ok, he would be ok, or maybe the diagnosis was wrong. I was told not to think about the bad things associated with the diagnosis and that I needed to be strong. I also was told I could choose how I handled this and to think of all the positive things. Blah Blah Blah! Why do people tell us that? My world had just been shattered and the life I had thought my son would have annihilated. Special needs mom! That’s what I was now. I was a “special needs mom”. I was the mom no one really ever wanted to be.

    I knew that I would get my child the very best care available to help address his various issues and I put on a good face for everyone. No one seemed to notice how much I was struggling because we were all too busy focusing on what my son needed. I wanted to be able to tell someone that I didn’t want to be a special needs mom. It’s not that I didn’t want my son because I desperately wanted him. I just didn’t want him to have special needs. The truth is I didn’t know if I could handle a child with special needs. I wanted my son to be an athlete so he would have a lot of friends, a college graduate so he would have a good education, to get married so he’d have a life partner, and to be a fireman because I thought it would make him happy. I just wanted him to be “normal.” I wanted to cry out that this wasn’t the way I imagined it to be. I wanted the fantasy of what I thought motherhood would be. I wanted my fantasy and I learned very quickly that I needed to grieve the loss of the child I thought I wanted so that I could make room for the miracle child I received. I had to grieve the loss of MY fantasies, because realistically they may never be possible for my son and that felt like a loss for us both. I was grieving my loss of the child I had thought I’d have as well as the perceived loss I assumed my son would feel due to his potential limitations. Did I just say grieve the loss of the child I didn’t have? Yes, I did. I had to grieve the loss of the child I expected. No one expects to have a child who has different needs. We expect healthy, happy, and neurotypical. When your child deviates from that there is an adjustment and grieving that needs to take place. I loved that fantasy “normal” son and wanted him so much, but he wasn’t who I got. I cried over the loss of this boy and in doing so I opened my heart even more to my son.

    Grieving the loss of the child I expected was hard to do because I thought it meant I was somehow rejecting in some respects the child I had. I think it’s actually the opposite. I think in acknowledging that there is a loss of some sort, it allowed me to embrace my son. It allowed me to let go of wanting or needing him to be something that he’s not and may never have been in the first place. It let me grieve the type of mom I thought I’d be and the activities I thought I’d be involved in. It has allowed me to fully and wholeheartedly celebrate all that my son is. He is so much better and so much more than the child of my imagination and my life is richer than I could have ever hoped.

    When I got his diagnosis, I thought I was losing all the things I dreamt for my son, but I was so mistaken. Those were my dreams, not his. As with any child, special needs or not, my son’s future is anything HE chooses. He may have to go about things a little differently. It might be a bit harder for him, but I’ll be damned if I’m going to be the person who tells him he can’t or shouldn’t or won’t be able to do something. His diagnosis has given me the gift of living in the moment and embracing all that he is and will be. My son is magnificent. He is smart and creative and kind and silly and stubborn and compassionate and sensitive and obsessed with all things fireman. He is the single greatest accomplishment of my life. I had to let go of what I thought I wanted so that I could fully appreciate the fact that I got someone even better.

    I guess I wanted to write this blog because I suspect I’m not the only parent who has felt a sense of grief or loss for the child you thought you were going to have and the type of parent you were going to get to be. You have permission to feel that grief and sorrow. It has no bearing on the depth of your love for your child and you aren’t betraying the child you have in feeling sadness or a loss. Your grief is independent of your love! Your children ARE special kids, but NOT because they have special needs.

    I have and will continue to go to the ends of the earth for my child.

    I am a very PROUD special needs mom.

    What is your superpower?


    A truly grateful special needs mom.

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