Why I'm So 'Into' My Child's Medical Condition

Recently, the first virtual family meeting for parents of children with a GRIN2B variation was held. GRIN2B is not the name of a disease, disorder, or syndrome. It’s the name of a gene located on the 12th chromosome. There are so few people diagnosed with a genetic variation at this location that we don’t have a syndrome name yet. We just say our children have a “GRIN2B mutation,” and we have an adorable bee as our symbol.

I had the date for this meeting on my calendar for months. I planned my day around the meeting. I tested and retested my computer to make sure I would be able to login when it was time.

The meeting started and names were starting to pop up that I recognized from our GRIN2B parent support group. We all took a turn to introduce ourselves. It was amazing to hear the voices of all these parents that I had communicated with online. As the introductions rolled on, I turned to my husband and commented on who this person was and what it was that their child had done earlier this week or how they were similar to Natalie. I was surprised at how much I knew about these people and their children that I had never met.

Then a voice came across the line and I was immediately overcome with emotion. This was the voice of a parent that lives over 3,700 miles away from me. I sobbed as they made their introduction and told a little bit about their child who is the same age as mine. I already understood everything they were saying – plus, I know the sound of this child’s laughter. Many GRIN2B children sound like Natalie. I know the way they put their hands just so when they are excited, the same way Natalie does. I also know how hard they have worked on walking and how much progress they have made, just the same way we did with Natalie. This child could be my daughter’s twin. It is incredible to think about, since a little over a year ago, I didn’t even know of a single child who was anything like Natalie. All of that changed when I found an article on The Mighty titled, “To the Person Who Just Googled ‘GRIN2B’ for the First Time.” That was how I found my GRIN2B tribe.

As I tried to get my life together I thought:

Why am I so into this?

Why am I having such an over-the-top reaction to “meeting” other families with GRIN2B? I looked over at my husband and he was crying too. He asked me why I was crying, and I said I was happy. I asked him why he was crying, and he said he was sad. I wasn’t sad. Not even a little.

My husband said to me, “If it wasn’t for you, we wouldn’t be doing this right now. I wouldn’t have pushed the way you did to find out what was going on with Natalie. I would have just accepted that she was delayed and I never would have found out about GRIN2B.”

Why am I so into this?

Why was it so important for me to know why Natalie was developmentally delayed? Everyone told us, “It doesn’t matter. Just do therapy.” Don’t get me wrong — therapy was and still is so important. I had to know. It took four years, nine months, and 18 days to find out.

Why am I so into this?

Why is it that after we received her diagnosis, I have been obsessed with finding out more and connecting as much as possible with others? I’m constantly checking the parent Facebook page and talking to my husband about these children and families like we’ve know them for years and years. I’ve done all the research studies I can get Natalie enrolled in. I’ve tried so hard to learn more about genetics, but I’m still very far away from really understanding it. I’ve suddenly fallen in love with all things bee-related. I even got a tattoo this summer with a bee on it to commemorate Natalie’s one-year anniversary of receiving a diagnosis of a GRIN2B mutation. I don’t even like bees; I’m terrified of them. Yet I have a bee tattoo, bee jewelry, bee shoes, and bee lights. Are there others like me?

Why am I so into this?

Why is it that when asked if I could meet anyone in the world, I get teary eyed thinking about three families who have a child with a GRIN2B variant? I couldn’t even keep myself together hearing voices come across the computer, I’m not sure how well I would fare in a face to face meeting.

Why am I so into this?

Then it all made sense to me. This is grief. This is all part of my grieving process. I was stuck for a long time, and still sometimes revisit the thoughts of everything that Natalie will likely never do. I have mourned what I had expected. I have come out on the other side of that dark cloud of anger and depression. I still slip back in, but my family pulls me back.

That’s why I’m so into this. This is my path out of the darkness.

I spent so much energy being scared when Natalie was young and not hitting any of her developmental milestones. People said, “Don’t worry. Babies all develop at their own rate.”

I spent so much energy being sad that Natalie still wasn’t even crawling when other kids her age were walking. People said, “She is just a late bloomer.”

I spent so much energy being angry that this was not the plan. People told me, “God has a plan.”

I spent so much energy being determined to figure out why our plan was thrown off. People told me, “You might never find out.”

Now that we know — what am I going to spend my energy on?

I’m honored and proud to be a founding member of The Grin2B Foundation. I have fully immersed myself in this new world of GRIN2B. I cling to every picture, video, and story that is shared about a fellow GRIN2B child, because when I learn about these children, I don’t feel like we are so alone in our journey. I buy every single bee-related item, even though I dislike bees, because my daughter belongs to an elite club whose mascot is a bee.

I have to spend this energy somewhere. I’m tired of being scared. I’m tired of being sad. I’m tired of being angry. It’s about time I spend this energy moving forward.

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Getty Images via Rostislav_Sedlacek