For the record, there were no bugs on our hike

We are diving into summer with a giant to-do list. I am excited to start checking things off. This will be our first nap-less summer and so I am feeling a little less tied down by the schedule. Mya has a few weeks off before summer school starts and we are taking advantage of our time. We have already been hiking, story-timing and have hit up a few parks. We have also stroller/shopping cart snaked our way through several grocery stores with only smiles and even turned down the offers for help out to the car. We have vacation bible school on the horizon. I am going to attend this year so that Mya can also participate. The idea of being surrounded by hundreds of screaming, bouncing kids for a whole week is giving me anxiety but I look forward to the challenge.

As a family our health has been less than stellar in the last month but hopefully we will crawl out of that ickyness really soon. Mya has of course joined the fun and been really congested and sleepy in a way that only Mya can pull off sleepy. And as a result she is showing her usual weirdness with temperature fluctuations, desaturations and nighttime nonsense but we have managed to handle everything at home and are finding joy in the occasional smile that finds its way through the fog.

We have made progress in filling some of her nursing hours and so I will have some help for some hours during the day and hopefully soon for overnights. This should help keep me from feeling so torn on those days when it really would be best for her to stay close to home. This was apparent yesterday as we checked out at CVS and I was bouncing the sleeping and apneic child on my chest in her carrier trying to convince her to breathe. But we needed bug spray for our hike, so what's a mother to do? We also got permission for the nurse to go with us on outings. It is so important to us that Mya not be the sister than is always at home with the nurse. Where she can participate we have always made an effort to make that happen and I don't want that to stop now that we have help with her care. But I am also trying not to feel mom guilt about the idea of leaving her at home for some of the items on our list, especially as we enter the summer heat that she simply cannot handle as well as her siblings. They deserve to experience all that summer has to offer a 5 year old. Mya will have 1:1 attention and be well loved. We can make this work for our family and I feel so blessed that the benefit is available to us during this time. I know not everyone who has a family member with similar challenges can say the same.