I haven’t wrote here since June. That feels like a lifetime ago now. My mom died in July. Then the other months just tick tocked along the line. My oldest son and I just got back from a long visit with my dad. My eyes are still puffy and vision is blurry as I look at this screen. I think it’s a combination of travel and allergies. It was such a good and busy trip, especially for my son and for my dad. They both really needed it. I did too of course but sometimes I feel like a puppeteer adjusting everyone’s happiness. (That’s one definition of a parent.) I’m still getting back to normal even though I slept really well. I had a lot on my mind this morning that I needed to figure out. Most of it is about Gavin. He will be five in January and I am simply scared. I want him to talk. I want him to love and be loved. I want him to experience life as we know how to experience it. With autism I know that’s a hard order to fill. And “normal” life for everyone else It’s not always roses but I want him to travel, read, experiment, and be himself. I’d be happy if he became a surfer, or a fisherman, or a nurse, or a food truck cook, or a domino player. It could be the most random damn thing I’ve ever heard of. But I just want him to be happy.
As I watched my oldest son blossom in maturity during our trip to see his grandpa, I had a tug in my heart for my youngest son to have those moments too. We haven’t even been on a trip together yet. Are trips necessary at this young age? No. But I would like to. I think he would too. And I know there is a way to get him more connected in our world. But how?
For the past five years, we have logged many hours into doctors offices, labs to draw blood, different therapy offices, and the most hours have just been in the car going back and forth. All the while, I tried to give all I could to our oldest son for treasured memories and to capture the innocence of his childhood. Even though my husband and I were always hurting to not see our sons experience all of this as a pair, a team – as “normal” brothers. As Christmas approaches right now, I really don’t have so many precious things on my mind. It’s because I feel like I am losing time. Most of my thoughts revolve around everything logical, real and solid. Doesn’t sound very romantic or whimsical does it? My oldest son is now seven but is already far wiser than his years. And my youngest, although still hanging on to the number four, is much the same although there have been big changes in the past year. They are close in age but they are becoming farther apart in their connection to each other as my oldest soars on in his own development.
As I juggle these feelings of holidays and the special moments I crave, this year I feel more like a warrior on a mission. I haven’t sat down and planned out the Christmas list for everyone or surprises I have in mind. I haven’t really started buying or making anything to make magic happen. (Okay, I did buy some felt gnomes to hold silverware on the table, but that’s it.) One thing I have done is order two new DNA tests for my husband and I. We’ve done one in the past but I am ready for fresh and new information. Plus I need the info on my BRCA genes so I can start getting tested early for risk of breast cancer, since my mom passed away this year from it. If you don’t take your health into your hands, no one else will. Time is the most precious and magic thing on my mind this holiday. There are only so many of these holidays left to celebrate with your *young* children. There are only so many wild summers left and quiet autumns. The faster I can get Gavin more on track with his communication and awareness, the faster my husband and I can feel like both our boys are together and connected to us in a deeper way. I want that so much.
So step one for this round of trying to accomplish this is controlling the health of myself and my husband. Our kids need us to be around in order to help them thrive. I can’t wait for those tests to come in because they are the peak of getting started again and knowing our baselines.
- schedule check ups, bring our test info
- diet, exercise and supplement changes
The next step is Liam. He needs to go to vision therapy in the new year, and we need to practice math, etc. The et cetera is to enjoy being a kid. Easy enough.
For Gavin: two main things. I want him to see an immunologist, or several of them. And I want to try autologous stem cell transplantation. So far he is seeing Immunologist #1 on January 13th. She seems to be really good and if she can’t answer all of our questions, I hope she can send us to another person who will. As we dig deeper during the year of 5, I need more real answers and less hope to’s in my book.
I read this quote recently, and I think now at 35 I am finally able to live this way:
Real growth is when you start checking and correcting yourself. Instead of blaming others, you take your power back by being responsible for yourself.
It doesn’t matter anymore how exactly Gavin got autism, or how exactly my mom got breast cancer, or how exactly my husband’s vision doesn’t allow him to live a normal life much of the time. These are all things I have researched to no end, and I hope to help others once I figure out the why’s. But right now all I can use my energy for is for fixing what I can and preventing anything worse.