You've heard it before. Being a parent to any child is like riding a roller coaster. It can be fun and exciting but also a little scary. There are twists and turns and ups and downs that you weren't expecting but in the end you are so glad you did it!
Being the parent of a child with complex medical needs is more like riding an unpredictable, shaky roller coaster. This coaster often sits at the edge of the park and is isolated away from the others. Many people avoid standing in line for it. Others get in line for it by chance but have no idea what they are in for. The beginning of the ride may start out smooth or be so bumpy you think you will throw up. During the uphill climb, your excitement and anticipation builds as you inch along with slow and jerky movements. You crest the hill and before you know it you are moving downhill at warp speed. You hold on for dear life in fear that you are going to fall out. Then it happens all over again.
And again.
And again.
The ups and downs and twists and turns are magnified and extreme and you don't always know how you'll survive it. But you feel bursts of joy and excitement along the way which is coupled with the relief and gratitude you experience each time you survive another sudden drop. This seems to give you the courage and strength you need to keep going. So you do.
Sometimes it takes days, weeks or even months between the very up and the very down. Today, on my roller coaster ride, it was within a coupe of hours.
This afternoon, we were given yet another new diagnosis. We've received a lot of those lately. You'd think Parker's body would be running out of things that can go wrong by now. None of the options to manage this new condition are fun. The treatment ranges from sucky to awful. We decided to start with the sucky option (regimented toileting schedule during the day and nighttime catheterization every night) and hope it makes a big enough difference that surgery isn't needed and he doesn't get another kidney infection.
I know that we can handle it. We've never had to catheterize before but we can learn. The doctor even commented, "With all you do for Parker's medical care, this will be no problem!" I know he's right. If we can handle a trach, feeding tube, seizures, hearing loss, vision loss, developmental delays, motor skill deficits, behavioral issues, non-verbal communication, weekly immunoglobulin infusions, 12 scheduled medications a day plus a stupidly long list of PRNs, an incredibly restricted diet due to multiple allergies and GI issues and multiple therapy and doctor appointments a week....then we can handle a catheter.
But the news still bummed me out. I mostly feel bad that Parker has to deal with this on top of everything else. Poor guy just can't catch a break. Of course, I have no doubt he'll handle it like a champ because he's a trooper and is braver than most adult men. But sometimes I sure wish he could just be a carefree and healthy kid.
That roller coaster took a deep dive down during the telehealth visit with the MAYO doctor this afternoon. Afterwards, I wanted to get in my PJ's, make chocolate chip cookies and eat half the batter, cuddle up with my kids on the couch and watch a funny movie. But special needs mamas very rarely get to do what they want. Instead, I loaded Parker and all his gear into the van and drove across town on this HOT and HUMID day (why do we live in Nebraska again?) for Parker's physical therapy appointment. I wasn't looking forward to it because I didn't think he would participate much. I haven't been able to get him to do much walking the last couple of days. Yesterday he wouldn't even walk much for his favorite respite nurse, Ms. Dee. He usually always shows off for her!
They are trying to figure out why Parker's walking and lower extremity strength has regressed and if the urological issues may be related in some way. There isn't an easy answer which is why Parker has been so busy with new specialists and tons of tests lately.
Suffice it to say, I didn't have high expectations for PT today. But to my amazement, Parker took EIGHT independent steps in therapy! He hasn't done that for months!! I couldn't stop smiling and Parker was clapping for himself and so proud. It was pretty much the greatest thing ever. For a moment, whatever worries I had from earlier today melted away and I experienced nothing but pure joy. We were on that uphill climb once again!
I hope we get to stay on the uphill climb awhile longer before we head down again but you never know if exciting progress or heartbreaking setbacks are around the corner. That's the life for a medically complex parent. You are in a constant state of hoping for the best but preparing for the worst. I don't suppose it is something you can really understand unless you've lived it. But today I guess I wanted to share.
And now some pictures from the last couple of weeks since I haven't written a blog in FOUR years...
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| At Parker's baseball game |
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| Parker doing his favorite summer activity! |
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| Alexa helped Parker build a robot for a summer school project |
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