Raising a Child With Extraordinary Needs: How the Lines Between Parenting and Caregiver Become Blurred

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Truth be told, when I found out I was pregnant with our third child, I never thought we would be raising a child with severe physical disabilities, a seizure disorder, gastroesphageal reflux disease, or care beyond anything we had ever experienced before.

It’s not something any parent ever imagines, but here we are eight years later, learning day by day how to provide the best care for our daughter; all the while finding the balance between being her Momma and her caregiver.

As odd as that may sound to some, parents are typically not caregivers. Yes, we care for our children through nurture, love and support. We guide them throughout their milestones, celebrate their independence, and as they grow, what is required of us, shifts. We move from changing dirty diapers and the messy (but fun) toddler years, to sending them off to school, watching them establish new friendships, seeing the occasional glimpse of who they will become in this world, and knowing one day your nest will be empty.

Many families, like us, raising children with extraordinary needs, instead live our lives through a different lense; one that consists of two roles: parent and caregiver. The role of caregiver becomes deeply entwined into our parenting role. As we love and nurture our children, we are learning to provide care that is essential for the well-being and development of our children, for the rest of their lives.

Some of us have not moved beyond the diapering stage, and possibly never will. Some of us are still feeding our grown children because they lack the motor function to do so independently, or they require feeds through a feeding tube in their nose or bellies. Some of us are lifting our grown children in and out of bed, into wheelchairs, into bath tubs, or into specialty devices. Some of us have chronic back problems. Some of us are struggling with mental health issues like anxiety and depression. Some of us have chronic broken sleep because we must tend to our children throughout the night with seizures, muscle spasms, reflux pain, insomnia, etc. Some of us have had to sit at the bedside of our children in the hospital and struggle with the worry they may not be coming home. All of us have had to learn the medical lingo used by professionals when discussing our child. All of us have had to learn to become fierce advocates so our children get the support and care they need. Some of us have had to leave full-time jobs and careers to care for our children. Some of us struggle with worry for the day we become old and our bodies feeble and we wonder who will help us care for them? What if we die before them?

Throughout all of this, us Mommas and Daddys work hard to strengthen our children’s abilities, pushing them to never give up. There is no better feeling than the moment you see your child overcome a challenge and see the sheer pride and sense of accomplishment in their eyes. These are the freaking AWESOME parenting moments!

For us, much of what I have mentioned applies to our family. We have learned to be parent caregivers. We had to be trained by physiotherapists to do specific stretches and positioning that would benefit our child. We were taught exercises targeted at motor function development by our occupational therapist. We have had indepth discussions surrounding caloric intake and ways to improve growth and development with the nutrition support team. We have sat with our daughter through several EEG tests to address seizure activity, all the while working hard to distract her while the technician attached nodes to her head. We have sat by our daughter’s bedside in the hospital while she recovered from surgery over a dozen times. We have been at her bedside in hospital for Epileptic events and sickness countless times! I have watched my eight year old daughter not even flinch when poked with a needle because by now, she has been poked literally hundreds of times. I have learned to change a g-tube in the comfort of my home, unassisted by nursing staff. I have removed bandages post surgery, I have (and still do) administer medication three times a day, carefully and accurately measuring each dose of the four medications required. I have not had a full night’s sleep in eight years. I watched EMTs perform lifesaving measures to save my child. I have sat by my child’s bedside in hospital, not knowing if she will be coming home. I have learned to use countless adapted devices that support my child’s well-being. We too, worry about what the future will bring. I have come to accept that our daughter will not have the independent life we had always wanted her to have. It’s a hard truth that has taken me a long time to accept. Although she may rely on us fully, we will always make sure her life is full and rich with experience. We work hard to focus on the abilities she has and not emphasise her limitations. Just because we don’t emphasise them, doesn’t mean they go away…and it doesn’t mean we have lost hope because we acknowledge they exist. I will forever be my daughter’s cheerleader, her soft place to fall, and the person who will always have her back. Because this is what we do for our kids.

Life can be a lot to handle sometimes…heck, a lot of times. It’s hard. It’s messy. It’s beautiful. It’s crazy. It’s raw…..and I think all families, no matter if you are raising typically developing children or kiddos with extraordinary needs, can relate. There are days I cry heartbroken tears, then there are days I cry joyful ones too. There are days I don’t know how I’ll ever make it through. There are days I question if I’m enough or if I’m doing enough. The lines between parent and caregiver has blurred for me because I can’t be one without the other. Throughout these last eight years, I have learned I am resilient, I am strong (eventhough at times, I feel weak…and that is perfectly ok), and if given the opportunity for thirty minutes of peace, I’m headed straight for a nap.

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