What I Want My Loved Ones to Imagine About My Life as a Special Needs Mom

My journey as a special needs parent has been a huge learning experience, from finding this whole other world I knew nothing about to learning so much more about myself and how I handle difficult times. I’ve also realized that I can’t always articulate how I really feel or how things are for my family.

This piece is an open invitation into my heart, my head and my soul. To my friends and family, I hope this gives you a better understanding of my challenges, my reality and my life.

Imagine becoming pregnant without trying, and it being the worst possible timing but the best possible news.

Imagine bonding with that tiny person in your belly. Feeling it move and kick and excitedly planning its arrival. Finding out it’s going to be a she. A baby sister for your first born.

Imagine the day she’s born and feeling on top of the world. Then the next day being told matter-of-factly she has a heart murmur. And she has “funny” ears and a “funny” chin and her chromosomes might not be how they should. You agree to a blood test, and the results take several weeks.

Imagine at 2 days old your baby is taken to another hospital for a heart echo. You watch her leave without you in a huge incubator and a private nurse. You wait anxiously for several hours until you’re reunited again. The results are repeated back second hand via a different doctor.

Imagine being discharged and leaving the hospital with a big fat question mark over your baby’s head.

Imagine sleepless nights at home and searching syndromes on Google night after night, trying to find something but hoping for nothing.

Imagine getting a call from the hospital four weeks later and knowing the genetic results would be there.

Imagine at the appointment being told her results weren’t normal and were was so incredibly rare even the pediatrician had to read up on it.

Imagine being told your baby may lead a normal life or may not. Coming home from the appointment you feel disconnected from your baby. Numb. Shocked. Sad.

Imagine those precious first months with your newborn. Instead of funny poo tales and cluster feeding nightmares, the months pass in a flurry of hospital tests and appointments. You’re counting down the months and wishing them away in place of answers.

Imagine living in a bubble of confusion. Of learning medical terminology and becoming an expert at mastering an “I’m OK” mask.

Imagine leaving with more questions than answers at appointments as time goes. You live your days in a kind of limbo. Over time the professionals involved with your child increase. And so does your diary.

Imagine the worry. It’s there in the pit of your stomach, lying dormant until they cough, choke and go blue. Until they vomit up after every meal for weeks. Until they lose weight or don’t gain enough. Until they develop strange behaviors or symptoms. Until there’s talk of future surgeries, tube feeding issues or worries about infection. Or until the next review, appointment or results. You never fully relax.

Imagine watching your child slow down in progress despite everything you’re doing. Some days you just want to give up, because it’s frustrating to live through day after day.

Imagine the mixture of joy and sadness as you watch your child’s friends move on and progress, while your child remains the same.

Imagine more and more equipment coming into your home, as it becomes ever clearer your child needs more support and more care.

Imagine there’s a night out planned or the chance for coffee, but your mindset isn’t there. You just can’t shake off your last appointment so you don’t go. You feel yourself withdraw in order to refuel. And leaving your child takes careful planning, so it isn’t always doable. Or maybe it just slips your mind. You have so many things to remember, to organize, to order. A social life is the first thing forgotten.

Imagine wanting so desperately to talk about it. To be honest about how things are so others might understand. But you can’t. You don’t know where to begin some days. It’s just too overwhelming for others.

Imagine when you go to bed at night on top of the usual worries. You’re kept awake by questions that can’t be answered. Will she walk? Will she climb? Will she say mommy? And when those questions don’t plague you, others do. Awful ones that you couldn’t ever repeat.

Imagine trying not to think too far into your child’s future. Most are desperate to keep their children young, but you’re wishing for yours to develop into a big girl.

Imagine you don’t feel like you quite fit anywhere.

But…

Imagine you were given a gift. The most perfect, wonderful and life-changing gift you could ever be given.

Imagine how grateful you would be despite all the hurdles and all the worrying times.

Imagine knowing, despite each and every struggle, your baby gives so much more back.

Imagine how brave she is. How she keeps fighting on despite so many odds being against her. Just to smile and to laugh.

Imagine that such a small body of a person can give you so much strength. It’s enough to carry on day after day.

Imagine you realize how lucky you really are.

Follow this journey at Dream Big for Dixie and the Dream Big for Dixie Facebook page.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.