When a Child With Your Child’s Disorder Passes Away


Four children have died in the past month. Not just any four children, but four children who have the same rare disorder as my son. And that scares me. Our children’s lives have an early expiration date.

You see, this rare disorder has had the potential of taking their life since they were born. Upon diagnosis, the doctor comes in with papers and solemnly delivers the news that this condition can be deadly and can take our precious child without much warning or it can happen over time. And so with this news, we take our babies home and watch them like a hawk, monitor their illnesses like an ICU physician, bring them to the ER when we have that famous “gut instinct,” and we hope and pray they’ll be the child who makes it to adulthood. We are most definitely those beloved helicopter parents. And for good reason.

I don’t know these four children personally, although I feel like I do. Their parents and I are family by way of having a child with special and medical needs and being on social media. I have watched these four children grow up, watched them reach milestones, endure hospital stays and be oh-so-loved by their families. Then one day, the news spreads like wildfire. Another child is gone.

Father kissing young son
Katie’s husband and son

Their deaths knock the wind out of me like a punch in the stomach. I sob at the news and mourn their loss for days, weeks and years after. Their loss hits me deep in my heart where I can feel a tiny sliver of the heartache their parents feel.

In a way, their child is my child. And my child is theirs. When one of the group buries their baby, we all grieve. Because after all, that could’ve been our baby. We can be removed from this elite group that we belong to and put into another elite group that no parent should ever have to belong to… the group of parents who now have an angel in heaven. The group that has empty, aching arms. The group that we fight to stay out of with every ounce of our being.

I wish I could ensure that my child lives a long, happy life. But I can’t. I don’t make the rules. But still, I dream… I think about what he’ll look like when he’s a teenager. I think about how his older brothers will go off and get married and he’ll be here with my husband and I smiling happily as they come back home to visit. I think about him being the size of my husband and us having to recruit help in caring for him. Yes, this life may sound arduous and incredibly difficult, but the thought of losing my child to his diagnosis gives me a stabbing pain in the heart and makes my throat close up, and that is far more difficult to deal with.

To no longer see his bright smile or sparkling eyes, no longer hear his infectious laugh or him humming to his favorite toy, no more hospital stays or therapy, or no longer caring for every aspect of his life — like I’ve done for the past nine years — that is a heartache I’m not ready for or will ever be ready for. While I grieve the deaths of these children and try to stop my own child from going to his eternal home, I remind myself to live in the here and now. Instead of worrying nonstop (which I do) about the how, when and where, I have to tell myself that my child is alive today and I need to cherish his presence.

I soak in his goodness every single day. I embed these memories we make — both the good and the bad — in my brain. I breathe in the smell of his shampoo and lotion when rocking him. I brush his thick hair with my fingers and feel its texture so it’ll stay with me forever. I try to make mental pictures of the life that is in his eyes so that I’ll never, ever forget. I just try my best to remember all of him, every single teeny tiny last piece of him. Forever.

This life we live is brutally difficult, strenuous and exhausting, but it is beautiful. It is ours together. And as hard as it may be, I can’t imagine not living it anymore. So I’ll sit here tonight rocking him, breathing him in and cherishing every day like it is our last and I’ll continue to do so until the end, when either I or he gets called home to be with the others.

Rest in peace, sweet angels. May you run, dance and leap for joy in heaven.

Follow this journey on My Blessed Little Nest.


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