Our Family’s Update – 4 years
Four years - wow! We are celebrating M’s fourth birthday and it’s time for an update. The last time I posted, M was just two weeks into school and was already loving it. Ben, A, N, & I were all at home doing school and work virtually, but isolated from our quarantine bubble again due to the additional risk of having M in school. It has been another quite eventful six months for our world and for our little family in the midst of it. Lots to catch up on!
It’s difficult to believe, but this school year is just a few days away from ending. M has absolutely thrived in her special education preschool setting. She has grown in every possible way, and we are beyond grateful for the expert work her team has done in supporting her this year. Everyone on her team has been fantastic, from her lead teacher and parapro to each therapist and bus driver. It is abundantly clear that they care deeply for M and highly value her care and progress. Though the decision to put her in school in-person was a difficult one in the middle of COVID, it was definitely the right one for her long-term growth and we are so thankful for these months of progress with this team of teachers. Her private therapies are also going extremely well. With all of this intervention, M is clearing the floor when jumping, going up and down stairs independently, having fun conversations, advocating for herself, singing up a storm, and starting to write a few letters. She even knows her shapes and colors. 🙂
A few weeks after M started school, we were able to get A back to in-person school in Kindergarten just a few doors down from M’s classroom. He has loved school also, and one of the highlights of his day is when he gets to see M on the playground and give her a hug (#melt). His teacher is great and will allow M’s teachers to bring her in to sit with him for a few minutes if she is having trouble calming down. Just so sweet.
We had M’s IEP meeting just last week to get everything in place for next year, and she will be transitioning to a co-teaching classroom that is more inclusive but still with a high level of support. We sincerely believe this is the right next step for M’s progress and her team is very confident this will be a great fit for her. It does come with multiple logistical changes - a different location, bus schedule, and an entirely new team of teachers and therapists. We definitely hit the jackpot this past year, and hopefully our next team will be great, too. It is a change that brings some trepidation, but we’re hopeful it will come together well.
Jordan’s Guardian Angels (JGA), the nonprofit driving the research for M’s genetic disorder, facilitated a virtual conference about a month ago. It was so refreshing to see the other families, hear about their victories and struggles, and learn what the research team has been up to. We are consistently just beyond grateful for that community of folks and for the passion of the research team on behalf of our kids. They are making good progress, even in the midst of COVID limitations, and we’re so thankful for all of their hard work.
Regarding our family support, we were pretty much on our own for several months until we were able to get vaccinated. Thankfully, all four grandparents along with Ben and I were able to get vaccinated fairly early on, and we were quite thrilled to leave isolation land behind us, at least for now. We especially needed additional help because I started a new job in January working at a local bank, so that added some extra complexity to our schedules. I am happy to say that the job is going well and my stomach issues are much more stable, which is all in all a fantastic improvement.
Ben is still working fully virtually, and N has remained virtual for school through the end of this school year. She has started her vaccination process as well now, and is very much looking forward to school in-person in the fall. The kids are all excited about a couple of summer camps and some extra grandparent time this summer while Mom and Dad are working. Ben and I are planning a long weekend trip for the first time in over a year. It’s so great to have a few fun things to look forward to.
Step by step, things are slowly improving for the Deaton family as we’re coming out of this pandemic season. Now that things are a bit more stable, more and more has been coming up for us to heal and recover from now that there is space to do so. I have realized, for example, that just the feeling of being overwhelmed with the ordinary daily tasks of our extraordinarily chaotic life is incredibly triggering for me because it reminds me of the traumatic struggles of M’s first six months of life. While I have always been a person that has found a lot of identity in juggling more than the average human, I’ve realized that it’s not healthy for me to do so now. While I hate saying no and stepping away from commitments, I’m stretching myself to do exactly that. That’s just one of about a dozen similar realizations I’ve had over the past three months. Hopefully, with the help of our carefully crafted support team and my incredibly gifted therapist, we can slowly find our way to something that looks like healing and recovery.
A neurologist on a podcast I was listening to the other day mentioned that you would have far more in common with a same-age buddy than you would with yourself 20 years ago. Life has a way of changing us in a million small and large ways. Sometimes it happens in uncomfortable leaps and bounds, and sometimes it is so subtle we can’t see it unless we look back over years and decades. I’m learning to recognize and (maybe!) start embracing the ways my experiences have permanently altered me. For a person who tries incredibly hard to be consistent, that is a stretching place indeed. We’re doing our best to support each other as we all embrace the learning and growing that comes uniquely in places of heartache, discomfort, and struggle.
In the midst of the ending of school and figuring out summer transitions, we are planning birthday gatherings for M and working on a Facebook fundraiser to support the research team. Most of all, we are celebrating M’s life, her progress, her joy, and the immense gift she is to us.
Happy fourth birthday, sweet girl. You are a treasure, and we are so honored to have a front-row seat to all the ways you are learning, growing, and overcoming.
