When I Realized I’d Become an Ungrateful Special Needs Parent

As the mother of two children with special needs, it is hard to admit that I have been ungrateful but I have. When I started this journey, I was grateful for every moment — every single snuggle, every medical intervention I needed to learn in order to provide my children with the best care possible. When I started this journey, I was shiny and new, ready to take on each day and find the beauty it had to offer. Yet as the days turned into weeks turned into months turned into years, I have become jaded and ungrateful, worn down by the obstacles we must overcome. Rather than enjoying the moments of parenthood, I have chosen to live in the not-so-shiny happenings of the day-to-day. Where I once found joy and strength, I find anxiety and anger. Somehow I have lost sight of what truly matters in my world, replacing my optimism with doubt and dread each passing day, taking for granted the life I have been given with my two miracle children.

boy and girl lying on couches
Maria’s children, Michael and Maiya.

It dawned on me this morning, with one toddler pulling on my pajama pant leg and the other calling “Mom, Mom, Mom” from his crib. I made my way to my son’s bedroom. Opening his door, I saw him standing in his crib, pants-less, his gastrostomy-jejunostomy tube opened at the port, dripping formula everywhere. His face lit up when he saw me, and his calls for Mom turned into excited squeals of affection. Yet I wasn’t happy to see him; I was annoyed at the mess he made, the extra time it was going to take me to clean him up. As I scooped him from his bed, I realized just how ungrateful I had become. It was in this moment, clutching my son to my chest, his formula soaking my shirt, that I cried for who I had become and the moments I have selfishly let slip away.

I have become so easily distracted by to-do lists and medical interventions that I have taken for granted the toddlers I have the privilege to watch grow. I have been so focused on the daily setbacks that I have taken for granted the small victories in each day, the milestones we have met and the happiness my children spread to the world around them — but not today.

Today, I won’t take for granted the piercing beeps of my sons feeding pump at 2 a.m. I will be thankful that it alerts me when he is out of his allergen-free, nutritionally-complete formula. I will be thankful that it provides the nourishment necessary for him to thrive and develop, keeping us from running total parenteral nutrition (TPN) through the catheter in his chest.

Today, I won’t take for granted the bickering between my 2- and 3-year-olds. As mind-boggling as their arguments might be (who fights over the pink and purple hair clips that neither one is wearing?), I will relish in their developing personalities and the opinions they are learning to express.

Today, I won’t take for granted my daughter’s need for autonomy and independence, even if it means it takes her an extra 15 minutes to get dressed. Could I do it for her, quickly and efficiently? Sure. But I won’t. Not today. Instead, I will wait patiently for her to problem-solve her way through putting socks and shoes on the correct feet, praising her efforts and her success.

Today, I won’t take for granted my son’s repetition of the few words he knows. After months’ of worrying that he would remain nonverbal, I will take notice of what he does say, hanging on his every word, even if there are only 12.

Today, I won’t take for granted the small victories, like finishing the load of laundry in one wash and dry cycle, or having 10 minutes to write before naptime ends. Instead, I will be thankful there was a naptime and that I accomplished something. I will find happiness in the clean shirt that has found its way back into the closet without having to be returned to the dryer to remove the wrinkles.

Today, I won’t take for granted the husband who let me sleep in until 10 a.m., getting up with the kids at 7 and handling the morning routine with a smile on his face. Instead, I will be thankful for him, realizing that not every woman is as lucky as I to have a partner in this emotionally and physically demanding life. I may not thank him outright, though maybe I should, but I will store this moment inside my heart with the thousands of other reasons I love him unconditionally and always.

Today, I won’t take for granted the messy living room, covered in toys and books and puzzles. I will relish the clutter, knowing that my children are engaged, learning and imagining through play. And then I will join them amongst the light-up fire truck and police car, the tiaras and gowns — because everyone should stop and play dress-up policewoman princess from time to time.

Today, I won’t take for granted the seconds I have with my children, the moments that I almost lost three years ago to sepsis, or three months ago to malnourishment. Instead, I will be present in each and every moment, finding happiness in the time I have with my children. I will hold them for as long as they allow, releasing them into the world with pride as they take their futures head on and with confidence.

Today, I will be grateful. I will live in this place of uncertainty, finding happiness in the little family I have created with a smile on my face and gratitude in my heart. And if there ever comes a day when I find myself taking for granted the gifts I have been given, I will find this, reread it, and search for new reasons to be thankful for the husband who
chose me and the life we have built around two of the most beautiful miracles on earth.

boy and girl on couch

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