The Grief I Experience as the Parent of a Medically Complex Child

There is a unique kind of grief that comes along with being the mama of a child who is medically complex. For me, the grief has come in waves. At the beginning, they were threatening to overtake me, constantly pulling me underwater. Other times they came softly, ebbing and flowing, giving me the chance to get my head above water.

I would be lying if I said I didn’t imagine how our life would be once Callie was born. I had big, grandiose, elaborate dreams.

And then life sidelined us; knocked us off the path that I had dreamed of and planned for us onto this completely new path. And the path it knocked us onto? It turned out it was much harder, scarier, and we didn’t have a damn map for it. No one we knew had walked the path before and we were alone on it. Lost. We now had a baby with a chronic heart condition and a lower limb amputee.

I grieved for small things. I didn’t get to take maternity pictures with Callie because she was born so early. After she was born, if I saw a beautiful maternity photo session, it would send me into a tailspin of depression. We didn’t get to send out a birth announcement or do newborn photos because Callie spent the first three months of her life in the NICU. Getting birth announcements in the mail for the first few years would gut me. The beautiful pictures marking another family’s joyous arrival of their healthy baby would rip me apart inside and I would have to quickly throw them in the trash to not have a physical reminder. A reminder that during the first few months of Callie’s life, she was fighting for her life. It was hard seeing other baby’s first steps, healthy baby milestone check ups, first soccer games, cheer camps and learning to swim. Even hearing about typical daily lives could bring it on. Seeing other kids running to their mamas. Kids jumping into swimming pools. They all triggered waves of grief.

It has taken me years to understand that it’s OK to grieve for what I thought would be — and isn’t. I used to pair the grief with guilt. How could I grieve for something when it’s Callie who has to face the challenges? Could it have been my fault we were even dealing with this in the first place? Why was I still upset years later? Shouldn’t I have been able to move past it by now? How can I be grief stricken when we have been so blessed?

The grief isn’t something that will end and I know that now. I know that sometimes the tides will rush in to overtake me, slamming against me with incredible force, like when we face medical emergencies. Other times, they will lap at my feet and then recede quietly. Sometimes I will go for months without thinking about my child’s medical conditions and other times we will simply have a bad day. It could be an anniversary of a surgery, I will see something on social media, or we will just have a life experience that we have to deal with and it triggers the trauma. The tide swells and grief is ignited. I’m swept out to sea fighting to keep my head above water. Now I understand it doesn’t make me a bad mama, nor does it mean I love our little miracle any less. It’s an emotion that I acknowledge — and then bounce back.

Because ultimately, that’s what life is about: the bounce back.

When you are getting knocked down and drug out… it’s the times that you stand up that are important. It’s the realization that this is now the path that you are on, and you have to own it. You have to bloom in the garden you’ve been planted in. You can acknowledge the grief, but you can’t drown in it.

It’s the realization that its not the choices we’ve been given but how we react to them. It’s the realization that I’m not invincible but we are resilient. It’s the realization that we aren’t inspiring others because we have the perfect lives. We are inspiring people with how we deal with our perfectly imperfect lives. It’s the realization that all of these scars we are collecting are giving us a greater gift — the strength, courage and tenacity to overcome them. It’s the realization that comparison is the thief of joy and learning that our milestones and triumphs may be different than others doesn’t make them less special. It’s the realization that we were blessed with a little wildflower among a field of roses. Some days it storms, and some days it shines. This is how flowers grow. And it’s time to bloom.