The Stages of Grief: And My Child’s Rare Medical Diagnosis

There are certain days in our lives we never forget… graduation, getting your driver’s license, your wedding day, and your children’s births. There are also horrible days we will never forget, where you were when 9/11 happened. The day Nora had her first x-ray and we received her diagnosis is a day I will never forget. I’ve written about that day before here and how the fear of the unknown shook me to the core. I remember the phone call with her primary care physician, who gave me the diagnosis and outlined what little she knew about congenital scoliosis and told us surgery or surgeries were in our daughter’s future and reiterated just how rare it was. I remember standing there, in my kitchen, taking that call and trying to hold it together and failing miserably. I was in complete shock. I remember telling my husband I needed to go out for a walk afterwards and I just ran, I ran till I couldn’t run anymore and broke down crying in front of a neighbors house. I’ll never forget that day.

The moment our children are first placed in our arms we can’t help but think of their futures. Naturally, we envision prefect, happy, healthy futures. Nora was just five month old. Five months. It wasn’t fair those hopes and dreams were being questioned already. When I got my wits about myself there were two thoughts that went through my mind. One it was a mistake. And two, I was begging God to make it a mistake and give me some horrible disease or something, anything.…just not her.

This was the beginning of my travels through the stages of grief. I believe certain diagnosis’s propel parents to experience the same stages of grief and loss that they experience when losing a loved one. But it’s different. Different in that we jump around the stages not in any particular order and revisit stages we have already been through and thought we were finished with.

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I went through all the stages of grief not that long before this. I’ve never really talked about this openly till now. It took Matt and me some time before we had Nora. We had gone through a number of miscarriages and my pregnancy with Nora was difficult in ways. At just 9 weeks of pregnancy, after a trip to the OR because of a threatened miscarriage, I was told I had a 50/50 shot of the pregnancy making it through the situation I was in. I was a high risk pregnancy from there on out. Within a couple of weeks, I also found out my step-dad, who was a big part of my life just like my dad, was diagnosed with stage 4 lung cancer and it was bad. I bargained and pleaded with God to let him be ok, I didn’t want to lose him. I said to God, “I can go through another miscarriage if Steve can be ok. I’ll have other opportunities for a baby just please let Steve be ok.” I wanted to take on more hardship to keep my stepdad. I was bargaining. But I didn’t know what bargaining was in terms of dealing with grief. But soon I was changing my mind. I begged God for both. I wanted that baby so badly and deep down I knew this pregnancy was different. I wanted Steve to be there when this baby was born. Was I asking so much to want both?

This time in my life and the thoughts that I had I still struggle with to this day. I think I always will. I feel guilty and terrible for both of the thoughts that I had, and in ways I will never fully understand it or forgive myself for my thinking. I’ve shared these thoughts with only a few people in my life, until now.

My stepdad passed away just 12 weeks from his diagnosis. I’m still angry Steve never got to meet Nora.

After Nora’s diagnosis, I was facing these stages of mourning and loss all over again but in a completely different way. I was in denial and bargaining in the beginning of course one of the stages is Depression. Thankfully it was hard to fall into a deep depression when I had this otherwise healthy, happy, beautiful, and funny little baby around. Her laugh, her face, her everything was a reminder to preserver and also to just enjoy life with baby.

Pushing the depression part of it aside quickly opened the door for anger to come on in. This stage is one I’ve visited often. In the beginning when anger visited, I first turned my anger at God, wondering why he would allow this sweet innocent baby to face all this. Then I was mad at myself. This somehow had to be my fault. Something I did wrong in my pregnancy (which is not true at all, this just occurs) something I did wrong in life and was being punished.

I didn’t let myself stay in anger or depression long, I jumped into testing pretty quickly. I became obsessed with reading everything I could. I found ways to get my hands on published studies on read them all. It would take me forever to get through some of these studies topictures of reading understand it all. I couldn’t do it without a medical dictionary too. I have a five inch three ring binder busting at the seams filled with studies, information, statistics, everything I can find. I’ve received quite as few interesting looks from surgeons when I’ve opened that puppy up in a consultation. I was really thorough in the testing – seeking realistic solutions stage. I’ve learned the hard part is defining what a realistic solution is to a complex, rare and unique spinal condition.

After some time I thought I had accepted it all. I wasn’t worrying and reading all I could constantly anymore. I thought I had handed it all over to God. And I did in many ways but I also was still holding onto that denial.

We spent months after her initial diagnosis just watching her spine and waiting to see how things would go. We had discussed the possibility of needing to cast her but there was some uncertainly in how her spine would progress and maybe we wouldn’t need to cast and her spine would hold decently steady till she was old enough for surgery. I held on to that like it was a five hundred dollar bill. I was in complete denial again. By time her one year birthday rolled around I knew her curve had increased significantly but I was in denial that it really meant anything. So much so that I told Matt he didn’t need to come to her routine x-ray and check up, we would be fine. It would be no different than the previous ones. Looking back I really don’t know how I was so oblivious. Of course it was that appointment, where I was by myself; I learned we had to start casting…. Hello again Anger.

In the time since we started casting, coming up on two years this summer, I’ve really come to a new place of acceptance. Acceptance unlike anything I could have envisioned two and a half years ago when we got this diagnosis. I truly believe this happened for a reason, a good reason as crazy as that sounds. I’m not only a different person since becoming a mother; I’m a different person since my daughter’s diagnosis. This has changed a part of my life, one part of my purpose in life. I will forever be an advocate, supporter, educator, fundraiser, and more for this rare and complex disease.

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Last week I thought I had mastered all the stages of grief.  I have actually been in a rather peaceful and positive place despite all the unknowns and recent setbacks. But denial and anger reared their ugly heads again and caught me off guard. It was after talking with a couple other congenital scoliosis moms and I realized, or remembered is a better way of putting it, that even after surgery or surgeries my daughter’s spine has a very slim chance of ever being straight. Ever. She will most likely always have a significant curve. I spent a couple days last week a little depressed and angered by this reality I had chosen to block out for some time.

But that’s the thing, we have choices. I could choose to continue to be angered, all the time. Or I could choose to accept this situation, do the very best we can in terms of seeking out medical treatment and learning as much as we can, then leaving it and entrusting it in God’s hands so we can focus on finding and exploiting the positive silver linings. I also have to remind myself that we are still very very lucky, she’s a happy and otherwise healthy and thriving toddler. Things could be so much worse. I see it every day, we all see it everyday.  Sometimes that makes me feel guilty too. Guilty for any of these feelings I have, knowing full well there are others who endure so much more.

This recent visit from denial and anger made me realize, this is a life long journey so why wouldn’t all these stages of grief become part of the life long journey too? My hope is that I can continue to find the acceptance and peace along the way and turn it into something good.

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