It's a Hard Knock Life

I've been struggling a lot lately. Life has been hard around here. As most of you know, Dylan was in the hospital a few weeks ago due to a serious POTS flare up and as some of you know Ali has been to the ER twice in as many weeks for 2 different reasons. It seems that that is just life now. A revolving door of doctors appointments and hospital stays, trips to urgent care and to get blood work done. It just never ends.

When we were in the hospital I got a little punch in the gut. On my Facebook memories was a picture of Dylan from last year, right around the time he was first diagnosed with POTS. And then I took a picture of him that same day. I wasn't going to post it, but I just, I feel like I need people to know. To see what this awful thing has done. Not for pity or crying emojis, but for understanding.

 

This is what has happened to my boy in a year. He looks so small and sick now, (even though somehow he is 5'4" already) and the glow has just gone. Usually the illnesses we have are considered invisible illnesses because most people with them look like normal healthy people. People say things like "but you don't look sick" or a million other unhelpful things. But in Dylan's case, it has taken it's toll on his body. He has lost weight, the circles under his eyes are a permanent fixture and the paleness pretty much is constant, even with his olive skin. We know that his POTS is in a huge flair, and he is having some malabsoroption issues as well as perhaps some adrenal issues. It's a lot! And we really aren't sure what it all is right now, just a ton of things piling up on top of each other. Thankfully his wit and hilarity are still mostly intact, though he could do to lose the teenage attitude!

Last week his doctor recommended that we get him fitted for a wheelchair so that he can continue to participate in life, even on his bad days. It won't be for every day use, just on the really bad days when he can't walk, or for when we have big outings like when we went out for Ali's birthday (we ended up having to wheel him out to the car on the rolling walker by the end of the day). At first we were like "Surely we aren't there yet..." but after some talking with the doctor and some other parents of kids with POTS, we've decided that it's the best thing for him. It isn't fair to make him wait around until his POTS gets better (if it does) for him to be able to go back to school full time, or to go to the arcade with his friends or go to the mall. He deserves a normal life and we will use whatever tools it takes to get him there.

As for me, this is going to sound so trivial, but I think one of the reasons I have been struggling is just the time of year and the prevalence of social media. It's Prom season (or spring formal in Dylan's case) and Spring Break and everyone is posting pictures from the beach or at festivals or all dressed up before their dances and I MISS THAT! I love getting to see everyone's lives from afar, but it is really hard for me to know that every spring break spent getting caught up on school work is a spring break we won't get back. For Ali, there are only 3 left. I know it's silly, but I just wish we were experiencing all of the same things instead of being holed up in the house just trying to survive. That's why it was so special that we got to go out for Ali's birthday, because it just doesn't happen often enough. We don't get to go and do things because just an afternoon trip to the movies renders them unconscious for the next 18 hours. It's a hard life to live, honestly. I am trying my very best to be positive and just keep putting one foot in front of the other. Some days that is easier than others, but we will keep on going. If you need me, I'll be hiding in my hammock!