summer

Let’s play ball!

Summer has begun for everyone, at least in our hemisphere. On social media I have seen families sending their kids off to camps, going on family trips and also just swimming by the pool.  It’s been a tough few months and finding camps for Maggie, has, again, been difficult.  The horse therapy camp was cancelled due to lack of interest, most day camps don’t support kids like Maggie that well, and so summer options always feel limited for Maggie and frustrating for us.  My mind swims with summer memories and all I want to do is create the same for our kids.

There is one activity that we discuss every year  – Going to a baseball game! Every year for the past 8 years, it just hasn’t been possible. It’s a doozy for Mags. The heat, the crowds, and sensory overload.

Life changes so quickly for us. A month ago, I wasn’t getting any sleep, Magnolia wasn’t eating and our  family was hustling to survive our days. I was meeting with several specialists every week. Talking to doctors and nurses on the phone, packing a hospital bag and making an ER criteria plan. We have a surgery scheduled for the G tube (feeding tube) in August, but we are still hoping we can manage Magnolia’s weight and hopefully improve her condition before then.

This last week, things changed again. She started eating more, not much more but enough to sustain her. Even better, she’s been in a relatively good mood. Since we never know how long we have, we tend to take a good day and relish in the moment. It’s summer and we need to have some fun.

I mentioned a baseball game to AJ. He is working all summer and most of our family plans together are in August. August is really too hot for a baseball game. BUT last weekend we had a small window of opportunity. AJ didn’t have to work, Mags was feeling good, there was a 4pm game and the weather was 70 degrees. WHAT?! The day before the game AJ bought tickets and we were both so excited. We couldn’t stop saying, “We’re going to a baseball game!” I think our excitement really encouraged the kids to be excited. We were all anxious with anticipation.

So we did it! We went to a Dodgers baseball game. It wasn’t easy, the game was even louder than we anticipated. Even though as adults AJ and I have been to baseball games, you don’t realize how loud it is until you have a child that doesn’t do well with lots of noise. SENSORY OVERLOAD for sure. I had packed earplugs and headphones. At first we tried earplugs, that barely helped, so we added the headphones and that seemed to help a lot. Her breathing was difficult during a lot of the game but she still had an awesome time. We made it to the 7th inning stretch and decided we were good. AJ, being the avid baseball fan that he is, was thrilled to sing with the kids, then leave.

Last year, we discussed AJ taking Gray by himself, but that made us both sad, since it was a reminder that Mags just hasn’t been able to go. I wanted this to be the year.  But Mags has been so weak with so much going on, it didn’t look like it would happen.

Tears of joy as we left the stadium. Such a feeling of accomplishment. The stars aligned, we saw the opportunity and we took it.