Little Cracks in the Heart

Every parent of a special needs child has their own unique and challenging journey and the journey ahead is unknown for all. There are commonalities as well; we all want what is best for our child,and we want to find strategies that work for the child and family dynamic. We all feel the emotional drain, the stress, the constant worry or fear of the unknown, and the exhaustion. These little cracks in our hearts that leave us as other.

We also at one time or another have wished that our child was just normal. Typically Developing, is the proper term as no child is abnormal, but in our minds we say “normal.” We say things like “I just want them to be normal, happy, and able.” Not that we are not grateful for the child we have, but we are human, and want what we cannot always have; a “normal” child. It’s often a fleeting thought, as we know it’s an improbable and many times impossible dream, but we have wished it, in those dark moments when the little cracks in our hearts hurt the most.

For me this wish shows up in those moments when my son picks up on why he is struggling but he can’t fix it, his little smile fades, he eyes curiously questioning how to make what he wants happen. It’s those moments my heart gets a new crack and bleeds for just a bit, but the scar never fully fades. These are hard moments, watching him struggle but I know he will be better for it, he will be strengthened by these trials.

However, that wish showed up again the other night, when I was getting both kids ready for bed. Joe had been out of town for a few days and I was already worn down by the myriad of tasks involved with child care and home keeping, irregular schedules and no extra helping hands.

J. was having a meltdown, the kind that rolls into more, increasing in intensity and no end in sight, most likely triggered in part due to fatigue. He physically could not calm himself and eventually he was a mixed mess of sobbing and screaming. As the evening progressed we moved into battles and meltdowns over a diaper change, brushing teeth, changing for bedtime, reading a book, and finally when C. wanted to nurse and go to sleep.

Two hours of on again/off again screaming and my heart, full of little cracks over the years, gave way to a gaping wound. I felt helpless and exhausted.

You see, J. has to learn something that comes naturally over time, for the most part, to the rest of us – managing his emotional and physical responses at the same time. For him it’s a physical and emotional reaction. Every. Single. Time. His body stiffens, which causes him more stress and possibly discomfort leading to an incredibly low threshold, something his therapist and I work on regularly.

So nightly we go through this screaming bed time routine. He can’t always stop. And so in that moment, through my tears of bewilderment and hurt, I wished my son normal.

I wished his brain was wired typically, that when he was upset, his body didn’t panic too. I wished for no more major, morning, afternoon and evening battles as he grasps for what little control he can get in his life. I wished for normal, typical 4 year old boy stuff I see my friends kids do.

No AFOs, whole body massages to ease sore muscles.

No CPSE, IEPs, OPWDD, orthopedic surgeons, orthotists, neurologists, occupational therapists, physical therapists, speech therapists, play therapists.

No more extra research into the brain, diets, activities, strategies, scheduling methods for frustration management, managing overwhelmed senses.

No more tired legs, exhausted body, fatigued afternoons with no options for socializing, playing or moving around without causing meltdowns.

Just jumping, running, playing, bouncing, climbing, twirling, dressing, using a toilet, riding a bicycle. Damn, even just walking down the street.

Normal. Just normal.

As I closed the door to the kids’ room, them sleeping inside, I went over and sat down. The wish had come, lingered and was gone but the feeling remained. I let it. I needed it to stay with me for just a moment.


2 thoughts on “Little Cracks in the Heart

  1. Brought tears to my eyes. My now 46-year-old brother has CP, and I only wish my mom had wonderful blogs like this so she knew she wasn’t alone. I only have vague memories of the struggles, and as a kid myself focused on his cherub like appearance and his explosive giggles on those good days! As luck would have it I know work for an orthopaedic surgeon who treats children in our area through our local Children’s Centre and am so amazed and greatful for the resources available to parents these days. When my own daughter was in high school she loved her volunteer work at the Centre were she was involved in caring children with autism so their parents could meet there together for support and networking.

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