Today Trey has been on ERT for one year. We had a small party at the MDU yesterday for his 53rd infusion with cake, presents and many many thanks to all of our family, nurses, doctors and other staff who have been here with us through this journey.
What does one year mean? It’s really more of a feeling. A great feeling of relief and accomplishment. We did it!! Trey is still only one of 4 kids in Canada who have been approved for treatment. The other 3 boys are all brothers in one family in Alberta. The feeling is knowing what would have happened to Trey’s body in the past year had he not been on ERT. It’s a relief knowing that I’m finished fighting for him to be on treatment (at least for now) as I know many other parents who are still fighting as hard as they can for their kids to get Elaprase. It’s knowing that he breathes and sleeps easily at night, and he can run, play and dress himself like any other kid his age.
When I think about where we were at one year ago: we had no idea what ERT would bring and if Trey might have a serious allergic reaction to the drug, and we were still not sure if Trey’s brain was affected by the disease.
This year, like I mentioned before, life is surprisingly like others around us. Besides our weekly jaunt to the hospital, which we treat like a job, our life is like our friends who have kids. After being through what we have in the past 2 years, I’ll admit, it’s strange. I even get to forgetting sometimes that Trey has anything at all. I’m glad for that for so many reasons, mostly because it means I treat Trey like any other kid. I know other people probably see Trey as different, but I don’t, and I think that’s important for our family so that Trey grows up thinking and believing he is capable of doing anything he puts his mind to.
It’s also coming up on Trey’s 2 year diagnosis anniversary which is Valentine’s Day. No matter how far we’ve come since then and how awesome Trey’s doing, remembering that time brings tears to my eyes and I get this sinking feeling in my chest and heart.
In the past weeks I have tried to think about what we can do as a family on that day, and we will do something for and with the kids, but I don’t want to celebrate with Ryan. It doesn’t feel right. All I can think about when I think of Valentine’s Day is sitting at Gotham restaurant with Ryan and 3 month old Avery in my lap, trying to enjoy dinner at a posh restaurant we’d made reservations at, when the only thing running through my head were the doctor’s words from earlier that day: “I think he might have an enlarged liver”, “possibility of a storage disorder”… Valentines Day has been ruined for me. I think I’ll talk to Ry about changing Valentines Day for us.
But then I get back to what’s important and how far we’ve come since then. It is a strange experience having been at a point where I honestly believed my life was over (and I can still feel those feelings) and then coming to the place where I’m at now. We’ve gotten back into the groove of living life again. I am so grateful for that.
And last but not least, a bit of “Tacos” talk. We checked out the elementary school last week where the fundraiser is being held this year. We’d love to have it at our house again, but there were so many people who came last year, if even the same numbers came this year and it rained, we’d be up a creek without a paddle. So we’re going to do it at a brand new and awesome elementary school.
It’s a perfect location for our fundraiser. And now because we’ve got more space, we are going to have 2 bouncy castles, a space for hockey and crafts for kids, as well as the pinata, raffle, auction, food and drinks we had like last year… and that’s just what we’ve got planned right now. Who knows who else will stop by or what might be brought… I don’t know if it’s possible, but the fundraiser will quite possibly be bigger and better than last year. I am really excited and I hope you are too!!