The photo above was taken in January of this year, only a couple of weeks after receiving Brandon’s diagnosis. For anyone reading this post who have been following my Instagram or personal Facebook page, you’ll notice that I posted this photo in January with the following caption:
“My son, Brandon, started receiving physical therapy since he was five months old. He has something called hypotonia, which means that he has a low muscle tone, though the doctors couldn’t tell me why. Since then, I have given him exercises I learned from the physical therapist so that he can do things like roll over, sit up, crawl, etc.
About a month ago, my husband and I received a diagnosis from the geneticist that Brandon has a rare genetic condition. He’s missing some genetic material in his DNA, which most likely occurred as a random event during or near conception. This condition is the reason for his developmental delays, both physically and cognitively. We were informed that he would probably have intellectual disability ranging from mild to severe, though only time will tell where he will fall under that range. The best we can do is to continue giving him various therapies so that he can reach his full potential.
To say that I was devastated by the news would be an understatement. In fact, I have had some challenges in my life but this one caused me the greatest pain. So why am I writing about this “unfortunate story” on social media? For one, I don’t want to keep this inside as if it’s something to be ashamed of, because it’s not. Second, I know that there will be hardships and challenges ahead and having the courage to share my experiences publicly will enable me to become stronger and get through them better. I suppose you can say that this is an intro to the upcoming posts where I write about my journey in raising Brandon.
So where am I now? After the diagnosis, I’m learning to accept Brandon more fully for the way that he is, as opposed to wanting to change him to be “normal” as I have in the past. I am able to treat him with more love and tenderness, thereby being able to feel more joy, both with him and with myself. There are certainly rough days, both emotionally and physically. However, I am hopeful that I can learn to be more patient, loving, and open-minded through this journey.
*This photo is of Brandon at 22 months old in the walker that was lent to us by his physical therapist from the Infants and Toddlers Program. Love the staff there #gobrandonweigo”
(Photo above taken at the end of June)
An update: After sharing Brandon’s diagnosis in January, I was so touched to receive such an outpour of support from friends and family on Instagram and Facebook. Since I posted that first photo of him in a walker, not knowing when he may possibly take his first steps, Brandon surprised all of us by walking in April! Since then, he’s been improving with his walking day by day, first walking with his arms up for balance and now, practically running around the house! It’s been quite an amazing sight.
For anyone interested in an update, I’ve had a really tough time learning to live with this new “normal.” I’m so proud that Brandon’s made so much progress with his motor skills, however, his cognitive skills are developing at a painfully slow rate. He’s currently nonverbal and there’s a real possibility that he may be that way for the rest of his life. Of course our family hopes for more but the reality is that we need to brace for the worst case scenario and learn to be okay with that. I admit, it still stings when I see other “typical” kids doing the things that they do—talking, running around and climbing playgrounds without extra support from the parents, learning things rapidly, etc.
The grief comes in waves and some days are just downright difficult. However, there are days when I see this situation in a more positive light and I learn to focus on all the good aspects, like how Brandon is walking now, he doesn’t have any pain from medical conditions, he seems happy, and so on. I’m also learning to focus on other amazing areas of my life, such as how I can continue my passion for photography on a part-time basis without the financial stress (thanks, James!), James and I are building a stronger marriage through tackling this challenge of being special needs parents together, I have awesome help from my mother-in-law, I get to travel the world and see incredible sights, etc.
Thanks to Brandon, I am becoming more intentional about counting my blessings and savoring the little things in life.