Special needs parenting

The Challenge of Letting Go in Parenting a Medically Fragile Child

Five years ago I had found out I was pregnant, and I was scared but so excited for the future. I remember gazing at the first ultrasound picture of my baby. We called the baby “nugget” because in the photos it looked just like a peanut. Now 5 years later, I have a 4.5-year-old son, who is no longer a nugget, and our life isn’t anything like I envisioned it would be. There have been times along the way where I have had let go of what I had hoped for and what I had longed for as a parent. My child was born premature, sick, and all these years later has never gotten better. We now live in a world where I check feeding pumps for clogs, make sure stomas are not chafed or infected, ensure the gas in his stomach is relieved via a tube and syringe, give him medications multiple times a day,  and we have therapy to help his development and sensory issues.

Over this time it’s been hard to let him go and let him be a child. The simple cause of that is I’m scared. When he was 3 months old, I watched him fight for his life. I witnessed his organs fail and watched doctors mystified on how to treat him. Those memories haunt me to this day, and I can still see his little mouth sucking on the ventilator tube that kept him alive in my mind. There are days the memories are so fresh, that it is hard for me to allow anyone else to care for him. I worry terribly what could happen if he was left in the wrong hands. No one truly knows how to care for him other than my husband and me, and I fear what will happen the more I let him go.

Yet, he’s growing up, and he needs to be able to see the world, experience things without his mom and dad, and he needs to be free to live without fear of what could happen. My biggest challenge in this entire experience has been residing in the present. I am often stuck either thinking of the past, or I am sitting worrying about upcoming appointments, evaluations, or surgical procedures that are on the horizon. During these years, I have struggled to truly be present in his life, and not be consumed by the grief and the stress of caring for a medically fragile child. Somedays I fear that I will have wasted his entire childhood in fight or flight mode, and I will miss out on the incredible opportunity of watching him find his own way in the world.

I know his life will look different from mine.  I am prepared for the reality that he may never leave our home, and I have already thought ahead about the fact that he may never go to college, have a full-time job, get married or have children. Finding our way in this world has been really challenging because nothing seems suited for children that have disabilities and severe health issues. There is no blueprint I can follow to see what to expect for his life, and I have a hard time finding anyone that has been on this road before me. Our society isn’t built for people that aren’t able bodied and of an able mind. The reality that I will care for my son for the rest of my life is something that weighs heavy on my heart every day.

In the midst of all this uncertainty, I have a child that is curious about the world, eager to learn and has a zest for playing and laughing. He is eager is watch others, and loves to try what he has learned in therapy at home. There are mountains of obstacles before him every single day, and most days he doesn’t pay them any mind. He goes about his time as if there is no care in the world. Even though he will be panting and out of breath, he still wants to play and run. Somedays he is so unfazed by his differences that he pushes himself to try new things. I have no idea where that drive and spunk comes from, but I admire his tenacity, his effort, and his calm disposition despite the fact that I know many days he doesn’t feel well.

I struggle with letting go. Most parents struggle with letting go, but I struggle with letting him go and be cared for by others. I fear that I might trust the wrong person, and in the wrong hands, I am afraid his life will end. Each day I move further away from his time on life support, and I realize how far we have come. I stretch my arms a little bit further, and I allow him to be in the world without me for a few hours every week by going to preschool. Eventually, I will let him go and send him to school for longer periods, and I will hopefully watch in pride.

There has been no magic formula for me to let go. I have just had to do it a little bit every single day. Not long ago it occurred to me that parenting is really just a series of letting go whether your child is healthy or has medical issues. As our children grow, we are continually letting them go further and further into the world. Each day they are learning to depend on us less and finding their own voice, making their own choices, and they are finding their way through their life. I know that his dependence on me will always be different than that of other children. He will always need someone to help him with his illness, and as he grows, it’s nice to know others are willing to take on some of that responsiblity.  I may never be ok with letting him go, but I have to let him go so he can grow. I cannot sit paralyzed in my own fear because he deserves to experience a life that is beautiful and full of happiness. His life has to include people outside of his parents, and my hope is that by letting him go a bit more each day he will find a way to blossom and thrive in a world that isn’t exactly suited for him. Each day that I let him go, I find more and more peace inside of me. There is truth that there is peace in letting go. I am grateful I am starting to find that peace.