I distinctly remember being in the ICU with Alexis and the doctor saying, “Brain injuries are a marathon, not a sprint.” I was ok with that, we had just ran our second marathon only two months before her injury. To me, that analogy made it seem like it was manageable. I get what he was saying…healing a brain injury takes a long time. But my marathons are over in under four hours. We are coming up on five years.

This is no marathon my friends, this is a lifetime.

I’ve said it before, in no way will I ever lose sight of where we could have been. It doesn’t mean that my heart doesn’t break just a little bit every day when I realize that there is probably no end in sight. This weekend has been a good example of the very thin line between happiness and sadness.

We’ve spent several days in Minneapolis for what I like to call a “docscation”, you know, just a standard doctors appointments/vacation combo. We’ve known that at some point in Alexis’ life we were going to have to seriously consider surgical options for the tightness in her arms and legs (medically called tone). But it seems like our therapy, botox, casting, spliting, and braces combo isn’t enough for her growing body. We’ve discussed medicines, but she has tried a couple through oral intake, and it just makes
her tired and not able to talk. So we have come to another crossroads in search for some help. And these are the times that really suck, and remind me that in some sense, we are still very early in this battle.

It even scares me a little, because I fear what is to come.

BUT!!! There is the happy part too. It was only a few years ago that we were in Minneapolis for the very same reason, trying to get second and third opinions, and a few answers. We had made a vacation out of it, but it was a little rough. We did the Mall of America amusement park, we were very excited because they had a lot of Dora the Explorer themed rides. But we were quick to realize that there wasn’t a lot that she could handle, even with the little kids rides. It was just too much for her brain to handle.We ended up spending more time in the amusement park store, buying everything that had Dora on it. I’ve admitted to it, there is nothing like treating Alexis to a little retail therapy.

Our visit this time has been much different. Alexis is in her usual “prove my parents wrong” form. The last time we were here, Brandon had to stop one of the kiddie rides called Swiper’s Sweeper. We had told her about that on our way here. What was the first ride Alexis wanted to go on?

You guessed it, Swiper’s Sweeper.

AND…forget having a parent with her. She quickly pointed out that the other kids were going without a parent. It’s another moment that Brandon and I have had to sit back and watch and sweat it out…but she is so proud of her independence. She loved the roller coaster, and has been willing to try every single ride.

She even had her eye on the Sponge Bob Square Pants “Pineapple Under the Sea” bounce house. However, when we got up to the gate, the person in charge of the ride said that adults can’t go in the bounce house. Alexis was going to have to go in by herself, and go in without braces. I tried to tell her that we would just find another ride to go on, but she was determined.

Her answer? “Mom, I’ll just roll around.”

So she bounced on her bottom, rolled around, and laughed like crazy. Nothing like living with a five-year-old that continues to teach you lessons everyday. There is just no way that anyone will ever tell her that she can’t do something.

I’ve watched my husband display the same tenacity on this trip. He carried her (60 pounds) up ten stories of stairs three different times so she could ride on a water slide. If that isn’t love and determination, I don’t know what is. I am pretty sure that her daddy
would carry her forty flights of stairs to see her laugh and scream the way she did on that water slide.

It’s been a good reminder for us of how far she really has come in a few years, and we can’t be more proud of her. I’ve noticed a lot of smiling faces over the last several days, parents enjoying watching their children have fun. But I would put our joy against
anyone of them.

We don’t know what will become of the “doctor” part of the “docscation.” Perhaps a surgery in a few months to sever some spinal nerves and relieve some of the tone, perhaps we are doing everything we can right now. Regardless, these trips teach us as much about how far she has come as they do remind us of our fears of the future.