I realized on Friday that Charlotte was exactly, to the day, the same age Grayson was the day he was diagnosed with Leigh’s, eleven days before his second birthday. That kind of baffles me.

How is Charlotte already that old? Time is so strange- it seems like we went through so much more and it took so much longer for Grayson to reach two years than it did Charlotte. And I guess it did. When I think about all the doctors appointments, therapy sessions, diagnostic tests, hospital stays and surgeries we crammed into two years, on top of just the life changing event of becoming a parent, I’m kind of amazed that I made it though that time with any kind of sanity intact.

During Grayson’s first two years, it seemed like I was always waiting. Waiting in doctor’s waiting rooms, waiting on huge test results and a diagnosis, and waiting on phone calls to schedule more doctors appointments and diagnostic tests. And then there was the waiting that never produced the results I was waiting on. I don’t remember the exact age he was when I realized Grayson would never sit up on his own, but for some reason, that particular milestone was the one I focused on for so long. I thought, if we just do enough therapy and exercises at home, get him bigger, and get him stronger, surely it will happen. And it never did. And unfortunately, today, Grayson’s spasticity in his waist/trunk has gotten so severe that it’s really difficult to even force him into a propped sitting position.

Maybe that’s why those first two years with Grayson seemed so much longer than Charlotte’s first two years have- his development moved at a snails pace and therefore so did time. With Charlotte, the speed that she changes-both physically and cognitively- just astounds me . And maybe I also needed time to move slower with Grayson so I could process everything that was happening and deal with the emotions that came along with that.

We don’t do much waiting anymore when it comes to Grayson. On any given day, his life is extremely routine and predictable, or it’s the complete opposite. On a normal (not sick and in the hospital) day, his routine and schedule varies very little, which keeps him calm and stable. This is why I find it difficult to blog about Grayson these days- every day is mostly the same. He isn’t learning new things, meeting any milestones or saying funny things. He still goes to the doctor a lot more than a typical kid, but it’s nowhere near the amount of appointments he had when he was a baby. And the vast majority of his appointments are boring and routine, in contrast to before when we never knew what we were going to find out every time we drove down to the Med Center.

Grayson won’t be with us forever, so for now, I am mostly fine with the slowness and routine of his days. We do a lot of sitting and snuggling on the couch, and in the midst of toddler craziness and general life busyness, I’ll take as many of those quiet, slow moments as I can get. Grayson is always my teacher.


  1. Down On The Farm on January 13, 2015 at 2:21 pm

    Time. Seems we are always rushing TOWARD something, wanting the time to go faster, or we are DREADING something, and wanting the time to just creep by. Sadly, time moves at the same pace every single second. God has given you this time, this day. And though I can't imagine the emotions that are involved with being Grayson's mom, I know that time is a gift. A gift that God has given you. Enjoy every single heartbeat, savor it, and thank God for it. He is working all together together for your good. I'm still praying, for Grayson and for Charlotte and for you.

  2. rainsthoughts on January 15, 2015 at 12:42 am


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