One Year Later

Yesterday, April 20, marked one year since Grayson was diagnosed with Mitochondrial Disease. I remember in the weeks leading up to the appointment, his first with our Mito specialist, I had such conflicting emotions. Of course I didn’t want my baby to have it, but I also needed so badly to have something to call the group of symptoms causing so many problems in his little body.

One year later (and 7 months since his specific diagnosis of Leighs) Mito is our normal, our life. We are no longer running any diagnostic tests, waiting weeks and weeks for biopsy or genetic results, or scouring Google for hours finding diseases and syndromes that fit Grayson’s symptoms. We know what it is, and now are just living with it, and trying to manage it.

I’ve been really worried about Grayson lately though. I don’t know if it’s the new medication he’s on, or disease progression, but he seems to be disconnected a lot of the time. A lot of times he doesn’t respond when someone calls his name or even gets close and talks to him. His stiffness is still awful, although the medication does seem to be making him more comfortable and he’s definitely sleeping better. He’s retching and vomiting at least once a day again.

When I can’t get him to respond or interested in anything else, I know music will always make a connection. I spent a lot of time this weekend just cuddling my boy and singing to him. He makes amazing eye contact, grins and giggles at his favorite parts when I’m singing his songs. It’s so funny though that, just like toys, he only likes certain ones. “Wheels On the Bus”- always a winner. “Twinkle, Twinkle”- meh.

We did a fundraising walk at the zoo Saturday morning with a team from his school. Although Grayson couldn’t see any of the animals, he seemed content to be outside, bundled up and pushed in his stroller (it was unusually cold for April). It makes my heart hurt that he can’t enjoy normal kid things like the zoo, but I have to remember what my counselor keeps telling me, that it’s me that’s sad, not him. He doesn’t know what he’s missing so he can’t be sad about it.

After such a stressful, scary, and sad week, along with G’s bittersweet anniversary, it was wonderful to have a weekend to spend together as a family- walking at the zoo, cuddling, singing, going to church, eating good food, and resting. Whatever happens with Grayson in the near or distant future, I hope I always remember the little fun things we did as a family- the days are hard and not always fun, but these are still good days.


  1. Erin on April 22, 2013 at 2:28 am

    Wow, a year…I remember the peace with having a name and the anguish that there is no real answer to the disease. I am sorry to hear that he is having a disconnected week and glad he is enjoying the songs and music. I love to see him respond to those silly veggie tales and his strongest connection is with you and it's beautiful. I love the pictures from the walk and so happy you had a nice family weekend together. Love you-

  2. Alex on April 22, 2013 at 3:32 am

    Yes they are good days when you can spend time with your family and enjoy them all. I can't believe it's been a year. A tough year, but you are one strong family and continue to be amazing. Sending you love.

  3. sobit2013 on April 22, 2013 at 6:50 am

    What a beautiful boy.

  4. Esperanza on April 22, 2013 at 9:03 pm

    I feel like lately I'm not sure what to say on your post lately. They are both beautiful and heart wrenching. I guess that is life though, especially with a boy as special as Grayson.

  5. Amber on April 23, 2013 at 2:01 am

    You made such a great point that it is you who feels sadness and not him. This is his normal. He's happy with something as simple as being held and having you sing to him. That's a beautiful thing and I know it must also be heartbreaking. You are giving him such a great life and so much love. Way too many kids like him are not nearly as fortunate to have the opportunities he has. I'm glad you've all gotten to spend fun time together lately.

  6. thenelipotmommy on April 23, 2013 at 11:59 pm

    Those pictures are just adorable! Sorry Grayson is having such a hard time lately, I hope the doctors can figure something out to help him. But glad you had some family time at the zoo! So important!!! Still too cold here to go, but we're waiting *im*patiently. ūüôā

  7. Laurie on May 2, 2013 at 5:02 pm

    Trace's favorite song is Wheels on the Bus too! Music has always been his favorite thing and way to soothe him with nothing else could. Your fammily is always in my prayers.

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