I haven’t posted much over the past few days.
Here’s why: We’ve just returned from spending several days with families of children with GRIN1, the same rare condition as my son Bryson. (The picture above shows Olivia, Owen and Bryson; all have GRIN1).
It was an amazing and uplifting experience. After years of feeling alone without a diagnosis, we have finally found a community of families just like ours.
But that’s not the only reason it was so great to spend time with these families.
It’s also that these are some of the kindest, most positive people I have ever met.
How is that possible?
Do terrible things happen more often to good people?
You might expect these families of children with severe developmental delays to be sad, or resentful, or to mourn the fact that their GRIN1 child isn’t healthy or “normal.”
Back before I had children, I remember learning that someone I knew had a daughter with severe autism, so bad she couldn’t speak. I remember feeling sad for his burden, and wondering how he was still able to go to work every day, and imagining how terrible it would be if I ever had a child with developmental delays.
After my recent kidney transplant, someone mentioned to me how unfair it was that my family had so many health issues. And when we’re at our lowest, my wife Laura and I do feel angry, and do feel unlucky, and do feel resentful.
But most of the time, we’ve accepted Bryson’s condition and are more focused on the positives (how well Bryson is progressing) and the opportunities (what we can do to prevent his seizures, help him learn to walk, and help him learn to talk).
But the biggest change in our lives is that these big health issues really put the little annoyances of daily life into perspective. Little things don’t matter like they used to.
We actually feel like pretty lucky people. Like the other families we met in Pittsburgh, we’ve grown through having these special children.
It’s not that bad things happen to good people. It’s that bad things can make us better people.
This doesn’t mean I’m grateful for it. I would give up any personal growth if Bryson didn’t have to suffer. I would give up almost anything to be able to have a conversation with him — to know what’s going on in his mind.
But it is all a good reminder that when bad things happen to us, we don’t need to become bad people. Or put another way: We don’t choose the shit life throws at us, but we can choose whether we let it make us stink.
That last sentence really hit me. You’re so completely and totally right and the fact that you’ve chosen to face life with this attitude is admirable, because of this your son will grow to live with his condition, rather than in spite of it and that is so so special and humbling. Life’s not always fair and I’m sorry that your son suffers. Sending my love to your family✨
Thanks so much Anna! We would never wish Bryson’s condition on anyone, but he is such a gift to us nevertheless!
😂 On your last sentence. I completely get it. Almost two years ago my 7 year old at the time was hospitalized for 2 months. He is still recovering from his encephalitis and GBS. I focus on the positives. You have to. My van just blew up over the weekend. It’s a 2014! And a month ago, my 4 years old needed stitches in the ER because she slipped at a neighbor’s house. It cost me over $4000 out of pocket. But you know what? My kids are all healthy right now, and we are smiling. We have each other. Not much matters outside of that. I’ve never heard of GRIN1. Bless your family. He’s a cutie!
You’re right Ipuna. I’m so glad that you and your son were okay when your van caught on fire.
Well Keith, your ariticle touched me; fristly I didn’t know what GRINI was till i read your article and i can only imagine how tough it must be for you and your family. The best thing from reading your article though is the lense you are using to live through each day, it is commendable. I pray (i hope it is okay to do that) for strength and courage to live each day for Bryson, for you and your wife.
Thanks Caroline. Prayers are always welcome!
After the conference I saw many families with GRIN1 kids, but there are so different. I was impressed how your wife Laura can handle different challenges! I really was impressed! I need to be more strong for my daughter`s future
Tatsiana – It was so nice to meet you and your lovely family in Pittsburgh. Strength is another important virtue we gain through having a disabled child. This is both internal strength and physical strength. Laura has big muscles on her arms because of all the lifting of Bryson she has to do. I’m not able to lift him until four months after my surgery.
Wow!!! What an awesome outlook on life! You and your family are a true inspiration. Thank you for sharing!
Thanks for that kind note Chenelle. Up close our lives look pretty messy but I’m so proud to be part of this family!
What a wonderful article – thank you. My nephew is Owen (the one in your pic) so I know your son must be amazing. I hope to come to a future grin1 gathering.
Thanks so much for reading and for leaving that comment Tiffany! It was such a pleasure to meet Owen and his family and it would be great to meet you at a future meeting.
Beautifully said Keith and a perfect reminder to us all. I feel blessed to have Laura in my life. I learn so much from her and from your beautiful family. Am so glad too you are well and getting stronger every day.
Thanks for visiting the blog Jennifer and thanks for this kind comment!
I was lucky enough to see first hand GRIN 1 families in Pittsburgh for this meeting. I am immensely proud of Laura, Keith, Connor and Bryson. for they have taught me that the little things in life are to be taken with a grain of salt. Their patience puts me to shame. These families do have a tough time in life but they are living it with grace and humour. I do admire them and continue to try to live by their example.
This is such a nice thing for you to say. If Laura and I are good parents it’s thanks to our own parents. So thank you!
Hoping that my family can learn to be thrilled with his progress more often and mourning his disabilities less frequently. Keep sharing positivity.
I love your perspective on this!
Hi. Keith. We live in UK and our son just has been diagnosed with GRIN1 mutation. It’s been relief to get diagnosis as we were waiting 5 years for this but still feel like walking in darkness as not much research and information about it.
It would be great to hear more from GRIN1 families and share experiences.