Do you remember the woman who tracked us down for Mr. Brad- red Jeep- McRae? Well, after the AMAZING red Jeep day, this wonderful woman- Lisa Stirling- asked us if Trey would like to ride in a fire truck. ARE YOU KIDDING ME? Well, that ride was last Thursday. Talk about a wicked couple of weeks.
We’ve been to that fire hall before. Each year our homeschooling group organizes a tour of that same fire hall, the last time we went was pre-IT trial. Thursday’s tour led to a heck of a lot of déjà vu because with every step Trey took around the hall, I recalled what his experience was like before IT drug. I revel at where we are now.
Before IT drug, Trey was distracted, didn’t understand a lot of what was said, and couldn’t attempt a lot of what was offered due to his sensory sensitivities. During Thursday’s tour, Trey listened, he stayed still and paid attention, he asked questions, and he played games- the fire fighters have a foosball table. While Trey was playing foosball, which to any of the firefighters watching may not have been a big deal, but to me, I was almost in tears watching a kid who had the attention to stay and play the game as long as the firefighters let him, understood the concept of the game so he was able to play with an 11-year old girl, and had quick enough responses to defend his goal from shots. I couldn’t tell who was better at the game, Trey or the 11-year old! NONE of this would have been possible pre-IT: not comprehension of the game, not the attention, nor the response time.
One of the biggest changes I noticed in Trey though, were the lack of sensory sensitivities I noted above. Being in a huge fire hall, with a lot of people around, a lot of sounds and action and big stuff, is a lot for a kid whose proprioceptive and vestibular systems are ‘off.’ Previously, trips to the fire hall were too much for Trey, I could tell by watching him. Although he wanted to be there and wanted to try things and socially had the confidence to do so, if an opportunity was offered to him before, like shooting water out of a fire hose, sitting in the fire truck, trying on fire jackets or boots, he may have moved towards participating in something like that, but the moment he got there, he would back away. It was just too much. He NEVER would have gone in the driver’s seat or rode home solo in a fire truck. (You’re going to have to crane your neck to the left to watch, the video is sideways, working on straightening it out, in the meantime just remember to stretch your neck to the right when you’re done! :-))
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Solely because of the IT drug, Trey was able to completely enjoy the entire experience. He had a BLAST. Apparently he was beaming from ear to ear for the whole ride home, waving and telling everyone ‘I’m in a firetruck!’ At the end of the night, after the truck drove away, he stood on the side of the road for a couple minutes in his fire jacket with sunglasses on (at 8:30 at night), telling everyone who passed by that he drove in a firetruck. It took about an hour for us all to come off that high.
Our trip to the fire hall was no less awesome for me. I was pretty quiet for a lot of the trip because I stood in awe, watching my changed son. Before and after. I have a ‘before and after’ diagnosis lens and now I have a ‘before and after’ IT drug trial lens. It really is surreal watching the child- your child- who you were told would be dead by 10-20 years of age (Trey turns 10 next year) grow and learn and do the opposite of what you expected to happen.
Thank you City of North Vancouver Fire Hall and fire fighters for a truly unforgettable night.
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If you watch the above video carefully, you’ll notice Trey’s ability to listen and follow directions. I was and continue to be baffled- watching this video- by how easily Trey now understands and processes information. It’s seemingly simple, but in my world nothing short of a miracle.
Note: Blogging has become bitter-sweet as a result of this IT trial. I am caught between the push and pull of posting to inspire and give hope to families whose boys might qualify for the next Phase of the trial and receive this drug, to give anecdotal evidence to the greater medical and approval communities regarding what we notice in Trey as a result of this drug, and to my dear friends whose sons have not qualified for the trial and who I know read these posts with a deep sense of unjustness and indescribable sadness. I still hold hope that with all the treatments and research up and coming, all our boys will get the treatment they so desperately need.
