Sunday, August 3, 2014
A rose by any other name
"It's only your name that's my enemy. You'd still be yourself even if you stopped being a Montaque. What's a Montaque anyway? It isn't a hand, a foot, an arm, a face or any other part of a man. Oh, be some other name! What does a name mean? The thing we call a rose would smell just as sweet if we called it by any other name. Romeo would be just as perfect even if he wasn't called Romeo."
The world of disability is often a tricky road to navigate. Especially in the parenting realm. The saying "you're damned if you do and damned if you don't" is so very true.
If you say you accept and embrace your child and their needs you can be seen as a liar and or delusional.
If you say you would change the circumstances if you could, you're uncaring and unaccepting.
But, what no one really talks about is the in between. The grief. The process of true acceptance. Of true love. The process of being happy and moving on. The truth that every single one of us is allowed to feel whatever the hell we want to.
I knew in my heart that my son was different, shortly after birth. I don't know if it was his smell or just mother's intuition, but I knew that there was something special about Bear. And by 5 months he was lagging so very far behind his peers developmentally.
By 8 months he was in physical therapy for torticollis. By 10 months his therapist pointed out his abnormal muscle tone. By 11 months we had been referred to three specialists.
"This is real. I have a child with special needs.", I thought to myself.
I realized I had to let go of the him I envisioned walking down a high school hallway wearing a football varsity jacket with flowing shoulder length blonde hair and daddy's dimple.
I realized that Bear had always been Bear. He is exactly who he is. Always was and always will be. I just had to get to know him instead of the idealistic image of him I had before he was born.
I grieved, some days a little, some days none, some days I fell on his floor and wrapped myself in his blankets, while crying and yelling at the ceiling. I grieved.
- I denied. I told myself it was a minor delay and that he would catch up.
- I was angry. At myself, it must be my fault. At my husband. It must be his fault. At my son.
"Why can't you just PICK UP THE DAMN SPOON LIKE A NORMAL KID AND EAT YOUR FOOD!?!?!?!"
- I bargained. "Just one delay. Just one. I can accept one as long as he can do this, this, and this."
-I became depressed, and anxious. To the point where PPD turned into Post Partum anxiety, OCD, and depression.
- I started to Accept the circumstances our family was in.
I started to accept that certain tasks were especially difficult for my son and that when he attempted them it was equivalent to me finishing an Iron Man. I started to accept that my husband was on his own path of grief and I needed to let him be there.
And then one day I felt a little better. A little stronger. And each day continued to feel a little easier.
I dusted myself off and asked "what's on the agenda for today because if this is going to be our life we are going to live it. FOR REAL.
We are living it. Our whole family. We live it everyday. And life is good.
It genuinely is.
So be where you are and be okay with where you are emotionally. Baby steps. One day you will begin to accept the process of living with disabilities. You will, I promise. For now, do whatever you need to do to get through another day and know, your grief is real and it is okay. It's normal. 100%
Don't forget to check out our "Exceptionally Special" page and "Tot Spot" for tips, tricks, and tidbits for the kiddos.