Our Family’s Update – 6.5 Years

Yes, it has been much longer this time since my last post! M is 6.5 now and it won't be long before she turns 7. Even though it's not a nice round birthday, I wanted to go ahead and write an update while I had the brain space. Thank you for your patience. 🙂 I would like to be writing more, but sometimes I struggle to think of what I can write that would be helpful. If you have any ideas of things I should consider writing posts about, drop me a line in the Contact Form and help me brainstorm!

A lot happens in 18 months! It's always an adventure to look back over the time that has passed and see just how far we have come. M is in 1st grade now, and still in a Significant Developmental Delay classroom in our public school system. It is a great fit for her, and we keep hitting the jackpot with our teachers and therapists at school. They all seem to sincerely care about her, both personally and academically, and we are so grateful. She is learning to read, write, add, and subtract. She has good friends, great relationships with the adults in her world, and enjoys life most of the time. She is also fully toilet trained, which took a while, but we finally did it! At this point, we are confident she will be able to have a job and some independence as an adult, which is wonderful. We had no idea where her capacities would wind up taking her, and we are thankful that she will have all of the foundational skills she will need to contribute meaningfully to her community as an adult.

The one issue we are pursuing some help with is her sleep. It seems to me that some structural issues with her vaulted palate may be causing some issues with her having good rest overnight. We completed a sleep study a few weeks ago, and we are hoping to have some guidance soon from the sleep neurologist. We expect orthodontics may be in our future. Otherwise, M is doing very well and we are incredibly pleased with her progress.

She still receives multiple private therapies each week on top of what happens at school. Unfortunately, our amazing horse instructor stopped doing lessons near us, so we were not able to continue horse. We still have multiple appointments each week including OT, PT, Speech, and swim lessons. She can say her 'k' and 'g' sounds very well now, which was a big accomplishment she was very proud of. She shares incredibly insightful comments that often leave us surprised. Her relationships with her siblings and other family members are very secure and positive. She's just a delightful kid and it's a lot of fun to watch her grow and learn.

We attended the family conference for M's genetic disorder in 2021, which was a lot of fun...while it lasted! We came down with COVID and had to leave on the second day of the conference, sadly. We made some fun memories in NYC before the conference started, which was great. I took N to a Broadway musical, we went to a few museums, and had lots of great food. The next conference is this summer in Boston (yay!), so we are hopeful we can avoid sickness and enjoy the whole conference this time! We have had quite a lot of sickness in the past year. With three kids in three different schools, we all seem to find a way to bring something home and pass it around the house.

Many folks find my website because of the guide I've written on how to apply for the Katie Beckett Medicaid Waiver in Georgia. We applied originally in 2018 and were approved. When renewal time came in 2020, COVID changed everything and we really didn't have to do a renewal for awhile. There were a couple of online renewals in the mix that only took 15 minutes, so when I got a renewal letter in the mail in November of 2023 indicating I could renew online, I thought this would be the same. Boy, was I wrong! After trying to submit a renewal online and not hearing any response, I called the office and found out just before our renewal deadline that we had to do a FULL renewal with all of the crazy paperwork. We were sidelined with some things happening in the family (more below) and had to request an extension, but thankfully I was able to follow my own directions and get the forms all ready to go within a few hours. Thanks, past Gina!

The other two kiddos are doing well. N is in high school in a STEM program, singing in chorus, and made it into her a cappella group, which you know I was excited about. 🙂 She is still riding horses, is doing great playing guitar, and has a fantastic friend group we all enjoy hanging out with. A won the chess trophy for his grade level last year, and has become a quick study at piano. It's all a lot to juggle with two full-time jobs as well!

Ben and I both started new jobs in 2023. In fact, we are both now managing teams of 10+ with much higher levels of responsibility. Our parents were all helping quite a bit until some medical issues came up with all four over the past year, which limited their ability to pitch in. We finally hired a regular babysitter a couple of months ago, which has been a huge help. We are continuing our therapy work, which is very fruitful and helpful. Lots of adjustment in the past year, though, so we are hoping things will settle into more of a routine on the work front in 2024. We're also both pursuing some music-related hobbies that we enjoy, which has been great. I've been singing with the Atlanta Symphony Chorus and doing some local performances with bands and theater groups. Ben has been playing violin with the Gerogia Philharmonic. Dormant parts of us have been active again after many years, and it has brought back a lot of fun.

The most impactful update for our family is, unfortunately, a very sad one. Ben's mom unexpectedly passed away a couple of weeks ago. We are all heartbroken, especially our kids. She was very close to each of them and had spent so much time investing in them. We miss her already - her hugs, her care, her heart to play with them, and how she was always creating special things for them. She loved all of us so deeply. We have completed the initial funeral events, and now we begin the long process of grieving and finding a new normal without her in our lives. For me, grieving is a very familiar skill I have been forced to learn over many losses in my history. For the rest of my family, this is uncharted territory in every way, and we are doing our best to navigate the stormy waters as we learn how to support each other.

Thank you for reading our update, and for continuing to cheer us on as we find our way together!