5 Reasons You Need a Rare Disease Community

This last weekend, my husband and I took our youngest son to Seattle for an annual DYRK1A meetup. Honestly, I was nervous about meeting everyone despite conversing with them throughout this last year. I thought I would be awkward or our conversations strained. It definitely wasn’t awkward and nothing was strained.

If anything, it confirmed that we needed to find our community. Whether it is for DYRK1A, autism, down syndrome and more. You need your community. This is why I wanted to write this post. I wanted to share the importance of finding people who truly understand your journey and struggles. Often times we think it is easier to just keep to ourselves, but it isn’t always good for us.

1. They seriously understand your struggles.

A couple weeks ago I had an individual reach out to me on my blog. Her daughter is 4 months old and was recently diagnosed with DYRK1A. I thought I would be super awkward talking to her, because I’ve never met her in person. It was anything but. We sat on the phone for a good 30 minutes and I told her our story — Jaxson’s story. She is currently going through everything our family went through with Jaxson’s first year of life.

Amazing, right?

Another thing our rare disease community can relate to is they know that this isn’t something our children will “outgrow of.” They know we will do our best to overcome it. I know people with typical children often mean well when they say “it’ll all work out,” or “they’ll outgrow it.” But it upsets me because they couldn’t possibly understand what we are going through. Not only can they not understand what we are going through, it makes me shut down and not want to talk about what I’m dealing with. Which in turn, I end up keeping to myself.

2. No judgment whatsoever.

During our meet and greet on Friday, we had all of our children in a conference room. It was a buffet-style dinner and they had a couple individuals guest speak. Through it all my son Jaxson took off getting into anything and everything. There were no heads shaking in disgust or glares; there was understanding.

Everywhere I looked I saw other children getting into anything and everything — like Jaxson. We all laughed and chased our children around and nodded our heads to one another as we crossed paths. I thought it would be stressful, but if anything it was relaxing. I didn’t have to worry about people judging and thinking I was a bad parent and can’t control my child.

They had a sibling panel during the last hour of the meet and greet where parents were able to hear from a sibling’s perspective. It really hit home; I seriously didn’t stop crying. I frequently worry about the future and who is going to take care of Jaxson. My whole table was in tears as well, and again no judgment.

3. It is hard to find and keep friendships.

I usually keep to myself and stay in a lot, as it is just easier for me. Often times I feel judged because it seems like others think my child isn’t well-behaved. Or he’s been looking at my phone too long while at a restaurant. As much as I don’t want to admit it, it is hard to keep friendships with typical children, because I’m envious of their lives. When their child started to crawl at 5 months or babbled, mine stayed silent and laid on his boppy. While their child has begun speaking in sentences and potty training, my son is still nonverbal and nowhere near ready to potty train. I know it isn’t fair to our typical child, James, but it is hard going out of my comfort zone to meet up for playdates.

I frequently stress about where we are going to go play, if it will be toddler-friendly, will someone judge my parenting skills and so much more. I often find myself staying in our home. Other rare disease mamas get it, and I’ve even begun going to weekly breakfasts with a mom while our children are in the middle of therapy. The new location of where Jaxson has his physical therapy has a deli! These weekly sessions are enough to keep my glass half full.

4. Being with your community is therapeutic.

Our rare disease community has all kinds of diagnosis, syndromes and symptoms. We don’t get together and start a pissing contest on who has it worse than the other. Nothing is a competition! When we were separated into age groups for our DYRK1A meetup last weekend (I was in the 0 to 5 years) I was able to open up about my true feelings. Things I couldn’t discuss with other family or friends because they wouldn’t understand (with the exception of my husband’s father and aunt) why I feel the way I do.

It was like sitting in a group therapy session, one by one introducing ourselves and our child. One by one sharing our fears of the present and future. Since DYRK1A syndrome is so rare, we aren’t really sure what to expect after the age of 30. The majority of our children in the group range from 0 years to 29 years old.

5. They are your extended family.

I’ve been talking to a majority of the DYRK1A families within this past year since receiving Jaxson’s diagnosis. I’ve only met a couple in person and yet I still find that they’re a big part of our lives. I check our Facebook group’s page on a daily basis and smile at the new faces joining and all of their “inch-stones” they achieve. The families with older children reminisce when they see the younger children’s photos and videos. This isn’t a club we all signed up to be in, and yet I couldn’t imagine my life without them in it.

My Challenge to You

Are you keeping to yourself during your children’s therapy appointments? Doctor appointments? Or just in general? My challenge to you is to reach out to another mama waiting beside you. Ask if she wants to catch a bite to eat or drink a cup of coffee to vent. Trust me, it is good to have a community.