16/10/2024
I have felt a ton of shame for years about my journey of accepting everything about what it meant for me to be Martin’s mom.
I didn’t start this journey of motherhood to hang up the title of mom and pick up the title of special needs parent/ caregiver.
I understand that might make some people uncomfortable. It doesn’t change the reality of what has happened.
I traded baseball and soccer games for endless therapy.
I traded a conversation I have never, not once, had with my little boy, for broken language and that broken language either only parroting what I have said or just telling me about the toy truck he loves most at the time. Then that being spoken in approximations, very broken language.
I traded trips with my husband after we retire, for a life where I take care of and have to worry about the safety of the child I dreamed about growing up and getting married and having a family of his own.
I have spent the better part of over ten years feeling fearful of sharing how deep and desperate my sadness has been. I am fearful because of how many times people have felt the need to remind me of my blessing, while in the same breath ignoring the very heavy parts of being my son’s parent.
This isn’t a criticism or a retraction of love for my son.
It is actually a release. Do you know why?
Because I spent the first six years of Martin’s life praying that he would be anything other than what he is. I exsisted in a space where I had to separate my special needs son from my son. I had to view him as two different people, just to survive. Then I realized how much I resented the child I spent every single day with.
Oof. Hard reality, right?
It would be, if I didn’t hear this story over and over again from my fellow special needs parents.
This is such a common feeling that society as a whole gets so squirmy that they either disappear or accuse you of abusing the child you loved so much that you admitted the very painful truth because you didn’t want to have to experience that truth to begin with and you definitely never wanted the truth to bleed onto the child you loved so much, even if it was super complicated.
No one wakes up one day with a goal to resent their special needs child.
It just. Fu***ng. Happens!
The weight we carry isn’t light.
We have to force a space in society for our children.
Because another hard reality is, there are very few places where children like mine BELONG, but there are a ton of places where our kids are ALLOWED to exist, not thrive.
Imagine being that parent. The one who is told repeatedly that their “normal” looking child needs to walk and not use the seat in a cart to contain the child who is impulsive or who can’t walk distances well.
That has been my journey.
I had to fight corporations in my county just to get special needs carts for the grocery store because lifting my eight year old over my head to get him in the cart, that so many felt empowered to say something to me about, that was becoming too cumbersome with a child half my size and not one corporation thought hey, we can afford to make her life easier. I hold a lot of resentment for the years I fought Walmart.
Special needs parents need a space to openly discuss their discouragement.
We need a release!
We sit in spaces that feel like vice grips!
Please, if you can’t set your own feelings about a conversation aside, just sit and listen.
Learn to be uncomfortable.
This has been the loneliest life I could have ever dreamed of.
Most of that is because I suffered in silence because so many were afraid of what they might feel about how they would feel if my shoes were on their own feet, that they would try to force me into the box they needed me to be in so they could be more comfortable in their denial.
It’s really hard to be the best you can be when the world is telling you your only option is to be super human in a world that wasn’t built for families like mine.
That’s why I share my journey.
Not for the people NOT living a life like this.
But for the mom who cries in the night so no one can hear her.
Or for the dad who drinks his sadness away because he can’t share how much he misses the child he thought he would have.
My heart goes out to the parents who mourn the life they dreamed of, for a life that no one could ever prepare for.
I share my journey in hopes to reach the young mom in me who suffered alone for such a long time.