Being a Parent of a Child with Special Medical Needs

child with special medical needs

I used to take being healthy as a fact in my life that deserved no attention let alone gratitude. 

I grew up with a grandfather who was an exceptional family physician and an aunt who was a pediatrician. Our healthcare needs were met at home. I never had to deal with strangers, hospitals, nurses or wait in any doctor’s office. I was always a person first and my symptoms of any cold or minor ache were merely passing occurrences that never were cause for concern. 

As an almost 40 year old woman, with two children, far away from my home country and the conveniences I had, I am acutely aware of how privileged and extremely lucky I was medically speaking. 

I became even more aware of the loss of this privilege when I became a mother of two children who each have their own unique medical needs. My daughter was diagnosed with a rare type of cancer when she was a baby (she is now cancer-free) and my son was diagnosed with dwarfism when he was two. 

Going to hospitals and regular doctor follow ups became part of our family’s new normal overnight. And what also became part of our new normal were my emotional outbursts, tears, irritability, loss of energy, insomnia, compulsive eating and grief. 

This led me to a long journey of self-discovery and self-help that I wrote about for Extra Lucky Moms a few months ago. 

What I learned from this healing journey that continues to this day are the following:

  1. No amount of tears, grief, and anger will be too little or too much for the pain of a parent whose child is sick or has any special medical needs. There is no under-reaction or over-reaction. Every person and every parent deals with their child’s illness in their own way. These are just feelings and I can accept them now. 
  2. How we deal with our reaction and feelings is a choice. Really it is! My choice was that I didn’t take care of myself, and it took me a couple of years to slowly realize that I needed to fuel and nourish myself more, or else I would collapse.  
  3. Only I am responsible for how I behave given what I am feeling. Just because I feel angry and hurt and in pain, doesn’t mean I should snap at my partner or anyone else. And if I do snap it means I owe them an apology. These are the moments we have choices. 
  4. It is possible to have joy and sorrow at the same time. It is possible to live a fulfilling and meaningful life. I am not just a parent. And my children aren’t just their condition. My children are whole and good as they are. 
  5. The best parent will make space for the self to rejuvenate, breathe, pause, walk, shake things off, laugh, socialize. A parent who sacrifices herself in the name of parenting is actually causing more harm.

When you are a parent of a child with special medical needs means that there is lots to think about and lots to navigate. You’ll be finding the best specialists, waiting for test results, waiting in hospital rooms, and waiting for answers. You’ll also be researching and becoming an expert on constipation and allergies, communicating the child’s needs to school and caretakers and many more. 

What I try to remember though, is that I am not alone, there’s plenty of other parents feeling exactly how I am feeling in this exact moment, and there have been plenty of parents before me and there will be plenty of parents after me feeling the same things.

Remembering my smallness in the universe is oddly comforting. Meanwhile, I can make sure the feelings don’t take over my life. I can make sure I pause, take regular breaks to reset. I can make sure I behave in ways that feels dignified, and doesn’t cause more havoc in my children’s life. Also, I can make sure to create an equal amount of space for joy and for sorrow. And I can make sure to never ever sacrifice myself in the name of parenthood. As Carl Jung said “there is no greater burden on a child than the unlived life of a parent”.

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Dr. Ava Ghasemi (Holdich) is a licensed Psychologist with 11 years experience in the U.S., Canada and the Middle East. She has a practice of individual and couples therapy at the MapleTree Center in Dubai.

Articles on www.aureliapsychology.com may feature the advice of a licensed expert or other non-clinicians and is for informational purposes only. It is not intended to be a substitute for advice, diagnosis or treatment from a trained professional. In an emergency, please seek help from your local medical or law enforcement services.


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