The Up and Down Roller Coaster of Parenting a Medically Complex Child

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...

At Parker's baseball game

Parker doing his favorite summer activity!

Alexa helped Parker build a robot for a summer school project

15 Things You Should Know When You Decide To Be A Stay At Home Mom With Young Children

I feel very fortunate to get to stay at home with my kids.  Really, I do. But starting out, I also felt a little unprepared and this journey isn't exactly what I thought it would be.  I imagined that a being a SAHM (Stay At Home Mom) would be a "nice break" and much less stressful than working outside the home.  I thought it meant lots of cuddle time, having happy children that adored me, getting lots of hugs, having more time to get everything done and having a better run household.  In all actuality, it's a lot of hard work, not at all glamorous, there's not nearly enough time in the day to get everything done and your children don't always like you.  Here is what I wish I was told before deciding to be a Stay At Home Mom with young children.  

1) Yoga pants and T-shirts become your entire wardrobe.  And...those clothes usually have spit up spots, other bodily fluids or whatever you made for lunch stuck on them.  It's a really good day if your hair and makeup get done. 

2) Sometimes you don't get to take a shower until the kids are down for a nap or until after your husband gets home.  Sometimes you don't get a shower until the next day. 

3) Occasionally you serve your family oatmeal or cold cereal for dinner because you didn't have the time or energy to come up with something better. 

4) You talk about "pee-pee" and "poo-poo" so much that it becomes a normal part of your vocabulary.  So much so, you even talk like this when there are no kids around.

5) You will come up with errands that need to be run, phone calls that need to be made or schedule a play date for your child just so you can get some much needed adult interaction.  Heck, this might mean you talk to the sacker at the grocery store or the cat lady down the street.  As long as they are over 5 feet tall and can make small talk you are good!

6) You are EXHAUSTED all the time!  You feel like you will never be able to catch up on sleep. 

7) You start out with grand ideas of no TV watching, eating only healthy foods and having perfectly well behaved children that listen the first time you ask them to do something. You learn quickly that sometimes it's much more realistic to turn cartoons on first thing in the morning, serve your child Lucky Charms for breakfast and Mac and Cheese for lunch and then bribe them with M&M's to use the potty or if they are good at the grocery store.  This doesn't make you a bad Mom.  It just means you are human.  

8) Your children may be small, but they are mighty.  They will take over control of the house if you let them.

9) It's not easy!  In fact it's the hardest job you will ever have.  Just when you master one thing, a harder thing comes along . And just when you find what works for one kid, you realize your other kid doesn't follow the same rules. 

10) Sometimes you feel shut out from the real world.  You feel alone and isolated.  Your Mommy friends that work just don't understand where you are coming from and your friends that don't have kids think you've got it made.  You are sick of being asked, "So what exactly do you do all day?"

11) You feel like you are messing up your kids for life on a regular basis.  Sometimes you feel like the worst mother in the world.  Occasionally you lose your cool.  Fortunately, you also find out that your children have a remarkable ability to forgive and this makes you very grateful.

12) A Mother's work is never done...I mean NEVER.  And being a Stay At Home Mom is even worse because you and the kids are home all day to make the house a mess, go through more laundry, and use more dishes.  You often feel like a maid...that doesn't get paid...and is not appreciated...and whose job is never done. 

13) Your days are often very monotonous.  You do dishes, change diapers, pick up toys, change diapers, do laundry, change diapers, kiss boo-boos, change diapers, sing kids' songs, change diapers, play with dolls or mega blocks, change diapers, clean, change diapers, make food, and did I mention change diapers?

14) You really don't get any time alone.  Like ever.  You get interrupted when using the bathroom, you don't get to shower in peace, you can't talk on the phone without hearing, "MOMMY" or having your leg tugged on, and you don't get to take breaks.

15) You feel guilty because you aren't the Super Mom that you thought you'd be when you decided to stay at home.  Your house doesn't look perfect, your kids aren't always on their best behavior, you don't always look that great, you don't have a hot dinner waiting on the table when your husband gets home from work and sometimes you just want to go back to work. 

But you know what, despite it all you wouldn't change a thing.  You do feel lucky that you get to mold and shape your children and be there with them while they are little.  You may feel like you are going crazy most days but you adapt and find survival strategies that help you through. Sometimes you have entire hours, entire afternoons or even entire days that go smoothly and wonderfully and you realize you wouldn't change this opportunity for the world.  You learn that it's OK not to be "Super Mom".  You figure out that "Super Mom" never really existed in the first place.  We all just do the best we can and our children will love us even if we do mess up once in awhile.