This is going to sound strange, but this morning I woke up with a sense of relief. I don’t think I realized it until today, but I was really stressed about getting through your birthday. Its like I couldn’t begin my healing process until it was over. Don’t get me wrong, today was just has hard as most, but it was different.
Sage went to his first SNAP swim session and reminded me so much of you. He screamed bloody murder and couldn’t wait to get out of the water. He only lasted 20 minutes and from what I can recall, that was actually less than you lasted on your first day. You were such a strong girl.
I know it’s hard to believe considering how much you enjoyed the pool, but it took you several weeks to realize you enjoyed it. I can remember that first day we took you, all you wanted to do was get out! You were so angry and you continued to be that way for about 4 – 6 weeks. At first it was miserable and many times I thought we’d have to give up. I thought that your love for bath time would transfer to happy times in the pool, so I kept pushing you to enjoy it. I recall feeling like one of those over the top parents who forces their children to do a sport when you could tell they really weren’t into it. It was a little embarrassing, but I knew you just needed more time to get use to it. I can’t recall what specifically changed, but one day when we arrived it was as though the switch had flipped. You were suddenly thrilled! From then on out you couldn’t wait to go back and we could hardly (literally) keep you out of the water on days that we arrived early. Waiting was never something you were fond of. I miss those days.
Today, I took a deep breath and told myself I could do it. I knew going back to the pool would be super difficult and I gave serious thought to not enrolling Sage into the class at all, but I love the SNAP program and how it includes children with multiple, significant disabilities. The teachers are wonderful and I think over time it will help me through my grieving process. Besides, your dad and I want Sage to learn how to swim in a supportive environment where he’s given the opportunity to be surrounded by a diverse group of children with disabilities, some of which remind us of you. That’s important to us. We want to teach Sage that hanging around and having friends with and without disabilities is “normal.” We don’t expect that Sage will be in SNAP forever or even more than maybe 2 – 3 years. We don’t want to take advantage of the limited space available to swimmers with disabilities. We want as many children as possible to experience the water magic, like you did.
My emotions did get the best of me once we got to the pool deck area. It was hard to look at the other parents. I knew they knew and frankly it’s harder to talk about your passing with other parents that also have kids with disabilities. A couple of dad’s asked how we were doing. Most didn’t say anything at all. It’s difficult. When your in a community of parents of children with disabilities death is not what you want to talk about. It’s scary and it’s real. Disability doesn’t always equal death, but you know what I mean. Let’s be real, I never thought your disabilities would cause you to die and certainly never at the age of four.
Your dad told me that going to SNAP will get easier every week. It doesn’t seem possible after today, but regardless I’ll go back because anything that allows me to think happy thoughts of you is what makes getting through each day slightly easier.
I love you.