This year has been a wild one, that’s for sure. So grab a cup of coffee or a glass of wine, kick back, and enjoy the show.
We spent our New Year’s at my husband Aunt Janet and Uncle Billy’s house in Spring Hill, Florida. It’s about 45 minutes from Orlando. My husband was selected for Warrant Officer and needed to go to training for a good chunk of the year. Because of this he wanted to surprise our oldest with a trip to Disney World.
Since Jaxson was doing well we left him with his Aunt Janet at 0500 and made our way over to Disney World. It was the sweetest thing, JJ started to cry when he realized where we were. Despite freezing our little butts off (we weren’t anticipating it to be windy and 40 degrees) we had loads of fun!
It was really hard watching my husband tell our boys goodbye mid January, I don’t think it gets any easier with each passing separation. I know he feels the same way, it gets harder. I spent most of my time shuffling Jaxson to doctor appointments and therapies, JJ went to VPK (voluntary preschool), and I spent time with friends in Pensacola.
We had a very eventful Emergency Room visit shortly after daddy left, I had to race over to the Pediatric Emergency Room with both kids by myself. The ER was PACKED because RSV (respiratory syncytial virus) was very prominent then. Thankfully both boys did well for me during the four hour wait and that was that.
A very eventful day was when my father-in-law drove us down to Spring Hill for Easter, so that we could spend time with family while my husband was away. I had NO idea that my husband and father-in-law were planning to surprise us.
I remember sleeping in the bed with both boys and waking up to my husband walking in the room. I was so shocked that I thought I was dreaming! It was very sweet. I am thankful to have spent Easter and our 9th anniversary with him and our family that weekend.
Another big day.. I was hanging out with my friend Lynne at her house while both of our boys were at the Child Development Center for VPK. It’s a day I will never forget.
We were hanging out on her black leather couch with coffee in hand and I receive a call from an Alabama number. I knew it was from our Genetics team because we had just done the WES (whole exome sequence) done back in December to check for genetic abnormalities.
Related Post: Jaxson’s Fight
One of the team members told us that we finally have an answer for Jaxson’s developmental delays and feeding difficulties: Dyrk1a Syndrome. She then told me that because this was so rare, it wasn’t even on their radar. They suspected Angel-man’s Syndrome or another. She began to tell me the features associated with the syndrome and how our son Jaxson will most likely not be able to live on his own.
A hard pill to swallow.
Thankfully my friend was with me and she was able to comfort me and talk about it a little bit. I sent my husband a text and waited for him to finish training to tell him of their findings.
I joined a support group for Dyrk1a Syndrome and came across a family that lived in Birmingham, Alabama and was going to be visiting Navarre, Florida in June. I was excited and anxious because I didn’t have my husband with me and I was meeting someone I’ve never met before.
I’m glad I went.
The Cobb family were the sweetest family ever, and their son Trotter is doing amazingly well. He participates in a Sleep Camp during the summer that teaches him how to do day to day tasks and they also give him a “job”. It’s very neat! I hope they have something like that for Jaxson as he gets older.
Related Post: Connecting with Another Dyrk1a Family
We were flown out to Pennsylvania for two weeks before my husband was due to return from training. It was absolutely fun! It was fun hanging out and getting to know my father-in-law’s future wife, Beth, and breaking up the monotony. JJ enjoyed it a lot, ESPECIALLY since they had a pool in the community. What kid doesn’t like the pool!
We went back and forth a lot between Pennsylvania and Long Island so that we could see my husband’s family. I think it was almost five years since I’ve been up there! Two weeks after our trip up North daddy came home and it was the greatest. I have a post on my Facebook page of our oldest running up to him when he got off the bus. Definitely brought tears to my eyes. They have such a special bond.
Related Post: The Crayola Experience in Easton, PA
Our Dyrk1a Syndrome held our very first Dyrk1a Syndrome Awareness Day! We are currently working on becoming a nonprofit organization, we are hoping to be one for the next Awareness Day. It was very last minute but it was so much fun! We were able to reach a few new families because of this, our Dyrk1a family continues to grow and grow!
We are currently sitting at 220 families with Dyrk1a Syndrome.
We became homeowners on October 15th of this year. We PCS’d up to North Carolina and bought our very first home together. We were nervous about hurricane Florence tearing through North Carolina but our house made it unscathed.
It is nice having my husband back and settling back into routine. Had to find new doctors for all of us and establish all of Jaxson’s therapies and specialists.
Related Post: Dyrk1a Syndrome Awareness Day
Can’t believe how fast this year has flown. We hosted our first Thanksgiving and Christmas with family and friends in our new home. It’s definitely been a year to remember.
This year has taught me that I am strong and I can do anything. I found myself mowing our lawn with Jaxson in tow in his Ergo carrier. I was referred to as “Super Mom” because of that. I’ve had to come out of my comfort zone. I started a new career path because of our youngest son’s diagnosis.
I can’t wait to see what 2019 brings!