For so long the guilt I felt was an enormous burden that no one could seem to understand. Sometimes I would give it voice, only to have it quickly silenced with words of encouragement and sayings that made sense in the reality of looking at things from a far away place. But always in my head, they lingered, my thought’s whispers that what happened to J was my fault.
For it was my body that did this to him. My body that, by all accounts, got confused when the beauty of pregnancy began. In my body’s chaos to figure out a new routine of maintaining life for two, released clots that blocked J’s source of life; leaving him to stroke. A helpless, yet to be born child, clinging for sustenance from a single source, to be cut off just long enough to cause damage. Brain damage. An intra-uterine stroke.
No… no one could understand the ultimate guilt I felt. For nine, long years. With this inner torture (actually for more than nine years), I carried this guilt within my soul. Until it was found to have been wrong. A misdiagnosis of etiology for much of J’s brain damage… it was not an intra-uterine stroke caused by my body’s inability to figure out it’s role; it just was. It just is. J’s brain malformed because it malformed. The true essence of Special Happens….
The guilt reluctantly subsided until recently wherein a new guilt formed. This new guilt is the guilt from a tired parent. The parent forever in the quest of a solid nights sleep; never to be obtained. For 10 years now. The parent who, if allowed to find sleep at all, is awoken in the middle of the night with perseverations lovingly being whispered in my ear. The same perseverations that are visited upon me most every moment of our together times during the day. For me, it doesn’t find an end. There is no break from perseverations that plague his mind… for either of us.
The behavioral “phases” that last much longer than a typical child’s phasing through life; that find their way from phase to compulsivity. We’re in the constant tease, can’t listen, can’t focus or be present in the “now” phase, perpetually slap-happy. A phase that’s hard to manage with a tall child that would run blindly and without a care, who can’t see his path from one side, that has no awareness of safety, societal appropriateness, etc. At least he’s happy.
Except, it can be tiring. It can be difficult to manage this while trying to make a meal or make a family outing. It becomes prominent in every facet of our lives, driving every facet of our lives… never ending; a constancy only understood by other parents of children with significant special needs.
It makes an already tired parent tired. It becomes that glass of water, neither half empty nor half full, but rather heavy for its constant holding (as so eloquently described by Stuart Duncan here).
And so, comes another guilt. A guilt that tells me how much we have to be thankful for. A guilt that makes me ashamed to even write this post…. that makes me feel as though I should never be tired of navigating any of our family’s needs.
And yet… I am. Very tired.
And feeling guilty. Very guilty.
Ist Photo: © Special Happens
2nd Photo: FotoGraf-Zahl via Flickr
Gina St. Aubin
Very well written Gina. I think mommy guilt goes with the job but it intensifies to an almost unmanageable level when special needs are introduced to the equation. I don’t have a magic answer other than to say you most definitely are not alone in this feeling. (((HUGS)))
Jennifer recently posted..Out of the Darkness Into the Light?
Thanks Jennifer. Sometimes it just feels like we’re supposed to *always* feel the specialness of our lives… I just feel horrible when it gets hazy.
Editor recently posted..A Parent’s Guilt Comes With Special Needs
You soul flows out to us, beautiful, <3 You are an amazing mom, I bet J and your other babies bow to your awesomeness
Bird recently posted..Ranch Dressing for the New Year
… and I to them. <3 you too, you amazing Momma!
Editor recently posted..A Parent’s Guilt Comes With Special Needs
What a beautifully written post and I think as a Mother their is always some sense of guilt for something its like its part of our nature. It just comes out more when you are that parent of a Special Needs child. God Bless you as you are an incredible Mom and J is so blessed to have you in his life and as his Mother as we are that know you Gina. You definitely are “NEVER ALONE” in this journey.
Susan Noble recently posted..February 2013 Featured Child
Susan,
Thank you!
Editor recently posted..A Parent’s Guilt Comes With Special Needs
When a Mom gives birth or adopts, she should be handed papers proclaiming her guilt for everything that will befall this child. If child excels, if was nothing you did right, it’s becuase the take after Daddy or it was in their genes, you just got lucky with your adoption. Meanwhile in reality, we have nothing to feel bad about as long as we love our children, do our dead level best to raise them in a safe environment with love and security. Now if I could just convince Mom’s of this…I would be magical. Letting go of parental guilt..best seller…writer anyone??
Letting go… Hm… not sure I ever will. I love me kids more than anything and only wish I was worthy of them.
Editor recently posted..A Parent’s Guilt Comes With Special Needs
You are WORTHY, that’s why God gave them to you and not someone else…nobody could do the job you for them and with them…what an honor…you are blessed. Now go steal a hug from one of those jewels!
Tears with you & understanding, my dear….
Thank you Sarah!
Editor recently posted..A Parent’s Guilt Comes With Special Needs
Very well said, Gina. We have different but similar stuff going on, and I can relate with your varying emotions.
Lori Lavender Luz recently posted..Core, courage, heart
Thank you Lori!
Editor recently posted..A Parent’s Guilt Comes With Special Needs
I too found this very well-written, Gina! It’s hard to be honest and pout your heart out sometimes…thanks for digging deep!
Thank you Michelle.
Special Happens recently posted..Special Needs Parents Marriages – Why Some Succeed
An angel in the night, Gina, with a heartfelt sentiment that reached out and wrapped its loving arms around us. Compassion flows through tears of appreciation. Renewed strength amidst the sleepless nights is a precious, precious gift. You have touched us deeply.
Thank you Renee!
Special Happens recently posted..Special Needs Parents Marriages – Why Some Succeed
Very well written article and most definitely relatable if you are a parent of a special needs child. Thank you for your honesty!