Jeffrey did not have school on Friday and Jayson didn't have to work because it was Good Friday, so when it came time for me to work in the afternoon, Jayson took the boys to visit his mom and Jeffrey spent the night. He was picked up pretty early on Saturday because we went to an Easter Egg hunt at a park in my parent's neighborhood. We were there for HOURS! It was a blast. Then we went home for a few, I had some errands to run for Sunday, and then I came back to get the boys. I took them to pick up my parents from the airport (they spent the week before in Ireland!), so of course we stayed to visit for awhile. The boys didn't go to bed until really late, and I had to wait until they were out to do their Easter stuff. Easter morning was a sleepy one, but when Jeffrey finally got out of bed, the boys got to see their baskets (giant surprise eggs I made using items from Dollar Tree), and when it warmed up we went outside. We didn't go anywhere yesterday, but we played outside most of the day. Although, I did get a nap too, thanks to Jayson!
I wanted to let everyone know what we did before I elaborated on milestones. You can see it was a busy weekend, and both boys are pretty worn down today, which is great since I'm not feeling well! Must have picked up a stomach bug at the park haha.
So, let's backtrack a little. Thinking back to when Jaxson was born, we had no clue what the extent of his disability would be. The doctors didn't even know if he would survive or for how long or anything. He had no diagnosis, so no prognosis. We were thrown into a world we were unfamiliar with, one which was terrifying and gratifying all at the same time. We knew we'd have lots of specialists, but our biggest concern was making sure Jax would be as normal as possible. So we started OT/PT and Speech early in his life. Weekly and bi-weekly appointments for the last four years (going back to the end of my pregnancy), plus specialist visits and countless tests has been exhausting. But watching Jaxson this weekend, I realized that every little hurdle and obstacle we endured were absolutely worth it.
I get a little sad watching Jaxson on the playground sometimes. Especially when there's a lot of kids, and this weekend there were a LOT of kids. Excited kids who are just kids. Jaxson can't keep up with them. He can't climb like they can, he's terrified to try the slide by himself around a lot of people, and he gets brushed to the side, passed by pushy kids trying to get to the slides, and sometimes he just stops to let all the other kids go before he keeps trying. It breaks my heart to see this. But yesterday Jaxson taught me something. He taught me that he has more determination and drive than I realized.
Take a look at this picture:
Jayson found a plank of wood and put it diagonal from the driveway to the yard because there's a huge gap between it and the ground. Jaxson was scared of it at first and wouldn't try, but all I had to do was help him once. Once. Then he was off, walking up and down the ramp, chasing Jeffrey and even tripping a few times with no tears. He would just get up and go again!
This is so different than how things used to be. You're looking at a kid who is terrified to use steps he doesn't know, doesn't want to climb on things without someone close by and has very little confidence in his capabilities. We try constantly to have him do as much as he is willing to do by himself, but it's not always much no matter how hard we push.
So Jaxson really recognized that he was different this weekend, noticed that he couldn't keep up, and he didn't like it. He won't work on those skills anywhere outside of his comfort zone, so this ramp is a big step in him gaining confidence in himself. And he wouldn't even be where he is without all of the ridiculous nonsense he's been through. PT, OT, Speech, surgeries, meds, hospital stays, all of it. Every little step, as tiny as sitting up on his knees for five seconds without help, has contributed to where he is. And he is amazing!
Noticing this on Easter I think had a more profound impact on me than it would have on any other day. Easter is about celebrating Christ forgiving our sins, which goes hand in hand with starting over and having a new beginning. Jax got his new beginning in December when they replaced his mitral valve during his second open-heart surgery. It's taken some time for him to get back to normal, and his normal is definitely not what it used to be! He's highly energetic and rotten and smart and funny and caring and a huge lover. He's independent as much as he can be, and gets mad when you try to help him before he's ready. I don't know where he gets that ;)
So this will be a new beginning for all of us. A new beginning as a family that can finally do things together without as much worry. Taking Jax to the park on a day like Saturday even six months ago would have meant a hospital stay with a respiratory issue gone out of control. Not now. He may get a runny nose or sneeze or even get a little cold, but it's not an automatic stay anymore. We still have to be very careful because of his heart, he is still more susceptible to illness, but we can relax a little and take him out of the house with more ease now. Which means plenty more trips to the park, COSI, the zoo, wherever I feel like taking them this summer!
So, for mom's out there who are dealing with the beginning stages of this journey, please know that every step is rewarding in it's own way. Every step is a learning experience, every milestone a celebration, every corner turned a relief. Jaxson still has many problems and I still have to watch him like a hawk, but his physical ability is far greater than we every thought it would be. And when that hits you like a ton of bricks on Easter, it's pretty deep.
~"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference." -Anonymous
