Yesterday morning our family made our way downtown (and got trapped downtown for awhile due to 95% of the streets being blocked off for the marathon) for the United Mitochondrial Disease Foundation support group. Grayson has not been diagnosed with Mito at this time, although we strongly suspect this is what he has. We are hoping if he does have Mito, the muscle biopsy he’s having in a few weeks will show it.
I’d never been to a support group before, and wasn’t sure what to expect. I was impressed that there was something for everyone- a nursery for the babies and toddlers, a kids/siblings group, parents of kids with Mito group, and adults with Mito group. Ryan and I of course went to the parents group.
The most interesting (and beneficial) thing for me was to see kids older than Grayson living with Mito. Mito is a disease that has a WIDE spectrum of symptoms and some are more severely affected than others- there were kids who could walk and kids who couldn’t, kids on oxygen, kids with braces on their legs, kids with feeding tubes. There were kids with normal cognitive abilities and some without. All the kids looked happy though, and were obviously loved and adored by their parents. I have a really hard time picturing Grayson at older ages, and it was nice to see that even kids with significant challenges are HAPPY and can have a great time on a Saturday morning.
The parents group was great- I felt on the verge of tears the entire time, both happy and sad. Sad because these families are dealing with so much, and happy because wow, it was amazing to be in a room filled with families that really get it, who really understand what we are dealing with. At one point the facilitator looked right at me and commented that I had a panicked look on my face- ha! I’ve never been good about hiding my emotions, and yes, a lot of this does make me a little panicky.
I really hope we can further connect with these families- I realized I am craving information and a connection from people who are further along in this journey than we are.
Next month, the UMDF is having an Energy for Life walk. My friend Kristi, whose daughter is also suspected to have Mito, is putting together a team. Grayson and I will be walking and if anyone would like to join us on the Lady A Team, click here. There is also a link on the page to make an online donation. We are excited to meet even more people and to help raise money to hopefully one day cure this disease!
So glad to hear that it was a good morning filled with information and connection. It is always good to chat with people in similar situations (any situations) and I am so glad that you went!
I can't imagine how amazing (and scary!) it must be to be surrounded by people who have walked in your shoes and know what you're going through, who can tell you what you might expect and assure you that things will be okay, that you will survive. I'm so glad this support group exists in your area and that you can connect with the people there. It must be invaluable.
my friend is part of a similar support group for kids with retts. her 3rd daughter has it and they go to walks, picnics, reunions, etc with other families. it will be so great for you to have this group so you can learn a lot but more importantly so you guys won't feel so alone in all of this.
I'm so happy you went and are gaining a support group that's KNOWS. Let me check that date – me and Larkin may walk with you guys!
What a blessing that you found this support group! Wish I could do the walk with you all, but Joshua is sleeping at that time. I pray this group opens so many doors and lifts you up! Would love to play and catch up sometime soon.
I am so glad you came and thank you so much for walking with us, it means so much!We wil all survive this journey and this path, and somehow end up stronger for it..and hopefully helping someone else one day! Hugs! Grayson sure did look cute Saturday in his plaid! 🙂