Our Family’s Update — 2.5 years

uphill climb

As we continue the long, uphill climb of finding our way through the special needs journey, I wanted to document an update on our family and how M's therapies are going at the 2.5-year mark.

As you may recall, in the last installment of our story, M was 1.5 and we had received our genetic disorder diagnosis as well as the prescription to increase our therapy from 3 to 10 times per week. We are right around the one-year mark from that increase, and I can happily say that it has been incredibly effective. Our combination of physical therapy, occupational therapy, speech therapy, music therapy, and adaptive swim is quite a lot to juggle. It's also amazingly encouraging that it's working so well! M was largely nonverbal until early 2019, when something clicked for her and she started talking up a storm. At 2.5, I have lost count of all of the words she knows, and we are working on increasing multi-syllable words/phrases. She will fill in words on songs we regularly sing as a family, and occasionally tries to sing a few words. She's really good at the toddler trot, and I now feel reasonably confident that she will break out into a true run someday. She's coloring, sorting colors, and stacking blocks like a champ. All of these things are still delayed on the developmental calendar for sure; we are beyond thrilled that they are happening at all.

There have been many times in the past few months when I've become teary and emotional as I realize she has mastered another skill that I wasn't sure she would ever be able to do. If I could go back to a year ago, just after our diagnosis, and give myself the confidence that she would be able to gain the skills she's already gained in just a year, that would have been incredibly comforting. Having grieved so much of what we didn't know for sure would be an option for her in the future, it's a wonderful bonus to have them as part of her journey after all.

On the scale of the entire family, things have settled into something much more stable. Over the past year, we bought and moved into a new house, changed schools, changed churches, and both Ben and I have changed jobs. It was another year of upheaval to say the least, but we are starting to settle into those decisions and see the fruit of all the work we've done finally start to pay off. Looking back on the past couple of years, I'm honestly amazed we were able to make the good decisions we've made in the midst of all we were adjusting to on the special needs front alone. Our house is a great fit for our family, fits in our financial picture reasonably, and puts us in a fantastic school cluster for both special and general education. The church we started going to over the summer of 2019 has a strong special needs ministry that has helped us immensely. Ben and I both were able to transition into new job situations that are a better fit for our family's needs. All of these changes have been made while staying geographically close to family and close friends who provide very regular support.

It has been a whirlwind of a year (three years, really), and our baseline level of chaos is higher than most. It's not simple and it's far from easy. Somehow we have managed to settle into something sustainable, though, and that feels incredibly great. We've had a lot of help--from M's rock star therapists, government program assistance, local special needs support organizations, our amazing marriage therapist, and four incredibly supportive grandparents--that have made this possible and will continue to provide key support as we continue on this path. I seriously doubted whether that was possible at many points in this journey. We have much left to learn and grow in for sure, and we can also celebrate that we've started to find our way.

Photo by Anthony Da Cruz on Unsplash