our new normal

November 29, 2018

When I decided I was going to start a blog for the studio, I decided I was also going to share a little bit into our personal world as well, but I really didn’t know just how personal I was going to get. Some things, I really just like to keep for me and my family and I’ve been that way now for several years. Sharing every detail of our lives on social media lost its appeal to me for lots of reasons, but I do recognize that it’s the easiest way to reach a bunch of friends and family and let everyone know what’s going on in our world. I’m going to try to keep this as brief as I can, but I also want to answer everyone’s questions — and we all know I’m a talker, so…

If you’d have told me a year ago – wait – even 4 months ago that I would be learning the ins-and-outs of managing life with a kid in a wheelchair I would have thought you were insane. Truly. Sometimes life just really hits you on top of the head though, right? We are running at full speed one day and standing still the next sometimes, and that just is how it is.

In August, Connor was diagnosed with Perthes Disease. You can read all about it at <- that link, but in short, it’s a rare disease of the hip bone. There are lots of things that can cause it, and we’ll never actually know what caused his, but our doctor seems to think it likely was caused by some sort of impact or injury to the hip that started the process. Basically, part of Connor’s hip bone is dying and it has to go through a pretty gnarly process before it regrows. Yes. Regrows. The bone just magically grows back into a new bone… Kind of like a lizard’s tail. It’s pretty fascinating.

Because of Connor’s age (he’s old for a Perthes diagnosis), his situation is a little bit more “wait and see” than a standard younger Perthes kiddo. We have to just see what happens… Sometimes kids at Connor’s age have no problem with the bone regeneration, and sometimes they have to have surgery. The biggest issue Connor deals with, and the reason he has to stay off his legs as much as possible, is the excruciating pain he is in regularly. Because the bone is affected right where he puts all of his weight on his hip, it’s very painful for him to walk most days.

A lot of people ask how we “knew” and what made us go to the doctor, and while his pain sort of started several months ago, a lot of this process happened seemingly overnight. Connor was really getting into and getting GREAT at gymnastics. His coach was excited about his progress and was talking about transitioning him to the competitive team. Occasionally, Connor would complain of hip pain and walk with a little limp, but because he was so active and such a climber I really brushed it off and told him he just needed to rest a little.

After developing what happened to be tendinitis in the same leg as the hip pain, I decided we needed to go get checked out. When I told the doctor about the occasional hip pain, I could tell it was a little red flag, but I wasn’t too terribly concerned because it had been a little while since the last time he complained about it. She told us to have him rest and to return immediately if the hip pain came back. Clearly – we ended up having to go back.

The day we went back to the office, I expected to be sent to have an x-ray or have an appointment made somewhere else.  I didn’t expect to be sent immediately to Vandy Children’s and to receive a life-changing diagnosis within literal minutes of being there. It was all very overwhelming. The next week was spent on the phone with people, in different doctor’s and physical therapy offices, and just processing.

The past three months have been a whirlwind. We have really great days and we have really not-so-great days, but overall we are staying positive. I’m thankful that this is only temporary, and that he WILL return to normal physical activity eventually. Right now, however, he has to spend most days on crutches or in his wheelchair because the pain is very severe if he is too active (and by too active, I mean slowly walking from one side of the school to the other side).

For a kid who has always been very athletic and who loved gymnastics SO much, this has been pretty tough on him. He just wants to play with his friends and live a normal, physical life. Thankfully, we have been given the green light (and highly encouraged) to get him in the pool 3-4 days a week, and he is LOVING it. He can move freely and is virtually pain free in the swimming pool! He’s excited to have something to physically challenge him again and keep him fit.

We are all just navigating life here, but things really are ok. The biggest reason I haven’t really wanted to share anything online about what we’ve been going through is because I don’t want anyone to feel bad for us or worry. We are ok! Connor goes through life with a smile on his face. He gets sad and angry sometimes and we encourage him to feel ALL the feelings, but he’s also been pretty positive. We do visual exercises and picture him feeling better and running free. We focus on angiogenesis, and the healing process, and we are just taking it one day at a time.

As far as how long this process is going to take — We really don’t know. Our doctor has told us that it can take anywhere from 18 months to 4 years. We don’t know if we’ll have to go through surgery. We don’t know if he’ll be in a wheelchair/on crutches the entire time. We really just don’t know. For me — a planner who likes to be in control — this whole “not knowing” part of it all has been really tough, but I think it’s part of the journey… We’re having to let go of control and having a plan.

I thank all of you for your love and for your support. We feel you and we are thankful for you!

 

Leave a Reply

X

  1. Robin Bixler

    November 29th, 2018 at 11:57 pm

    I’m so glad you shared. I had no idea. I know I’m far away, but please let me know if there is anything I can do for you guys.

  2. Emily

    November 30th, 2018 at 12:48 am

    I love you guys so big and so hard! Connor is such an amazing little man and he is so brave, I can’t think of any parents better suited to be with him through this journey than you and Ty! Sending mad love to you all!

X