We are now 2 weeks post-diagnosis.
Most parents will see life as life-before-kids and life-after-kids, and to some extent, we do too. But, for now, we’re definitely seeing life as life-before-diagnosis and life-after-diagnosis.
While nothing has physically changed, our mind state seems to have shifted. 2 weeks ago, our diagnosis was met with trepidation. We were still uncertain about what the future held for our son, and sure, I still don’t really know, but I’m much more hopeful than I was in life-before-diagnosis.
2 weeks ago, the only people I knew with any relation at all to Rubinstein-Taybi Syndrome (RTS) were the few people who had contacted me via our blog to ask if Braxton had been tested for it. When we received our diagnosis, I contacted each of them and told them their hunch was right and thanked them for bringing it to my attention. That day that I wrote about our diagnosis and the new journey that lie ahead, someone commented on the post and told me they passed the blog on to a friend and that friend in turn contacted me and told me she knew several people with RTS.
Just 3 days later, she added me on Facebook and posted a status welcoming us in to the RTS family, and within a few hours I had new messages and friend requests from SEVERAL other people who had children or family members with RTS all willing to reach out and connect with me. And just like that, I was hooked in to a fantastic support network with people all over the world ready and willing to walk with us on this journey. Within a few days I have personally added and talked to 42 individuals who have some experience with RTS on one level or another. I also found a Facebook Group with over 600 members.
I am repeatedly amazed at the advancements technology has made. 10 years ago, I would not have imagined getting “connected” so quickly. I seriously don’t know how I would have handled this journey without technology. The ability to reach out to others, write about life, instantly connect with people who share my experiences, is to some degree unfathomable…yet, here we are, and that’s exactly what has happened.
I’ve spent the past couple weeks researching and taking in as much information as I can. Memorizing the stats and characteristics and probabilities of this, that, and the other, not because I believe those figures completely describe my son, but because I now I have a new responsibility to educate others and create awareness. Rubinstein-Taybi Syndrome is pretty uncommon and almost none of our physicians know anything about it. It’s now my job to tell them what I know based on research, and Braxton’s job to teach them the reality.
The reality is that most of the research is outdated. The prognosis seems so grim from the research available, but I’ve learned from REAL people that the possibilities are endless. Every child continues to write their own story, and I have no doubt Braxton will do the same.
Individuals with RTS are supposed to be almost completely non-verbal. I’ve spoken to parents who say their kid will talk your ear off. And parents who say their child doesn’t have many words, but they are excellent with sign language or a communication device. Non-verbal? You’d never know that spending one afternoon with Braxton. He has been babbling like crazy in the past few weeks.
You’d be surprised to learn that many of the children with RTS have a passion for “typical” activities. I’ve spoken to parents who have children who are playing baseball, swimming, running, wrestling, cheerleading…things you’d never guess if you just took the research as fact.
One thing I’ve confirmed is that the feeding difficulties usually DO resolve. Many of the parents I’ve talked to say their child did not need a feeding tube forever. Most say by 5 or 6 their child was eating very well. Braxton is making strides toward that goal, and I’m certain he will be a great eater in his own time.
I’ve also learned that Braxton’s lovable social nature will never go away. I see pictures of 13 year old boys still willingly sitting on mom’s lap, content with mom’s hugs and kisses and my heart smiles knowing that I’ll still be able to hold him close as he grows older.
I’ve also ‘met’ a woman who is in her 30s and living completely on her own.
Are these things true for all children? Probably not. Experiences vary greatly, but it’s nice to know it’s not as scary as the research makes it out to be.
Are there still hard times ahead? Absolutely. The lifelong battles Braxton will have to face aren’t going anywhere.
The good thing is we are already monitoring everything that may present challenges, so we are proactively preparing. Some days will still be more difficult than others. Again, not every day is good, but there is something good in every day. And for the days that aren’t so good, I hold on to hope. I remind myself of these positive experiences of other families. I reach out to the new support network I have to find the “seasoned” mom to help me through. I cannot express enough how truly thankful I am to have such a network in my reach.
So, so much gratitude. My heart is full again.