A day in the life

I often write about the comparison of normal children vs those that have a chronic illness.  How about those that have a life threatening illness.  What about the kids who have cancer or something else that keeps them from doing the day to day.  This is often a comparison that I want to make between my kid and those that have cancer, etc.

But the thing is you can’t make that comparison.  You can’t compare a child who has a disease that could potentially kill them to a child who has something that has to be managed on a daily or even hourly basis.  If your child has cancer – I am truly sorry! You are simply making sure your child is going to live!  However, for us we have to process so much more!

Not only do we have to decide if our child is going to get up we have to decide when they do get up how much can they do.  Can they go to camp, outside to play or swimming?  This week Nicole has been going to Horseback Riding camp and volleyball camp.  She has managed to do both for 3 days out of 4.  This is a pretty good run considering she is exhausted when she gets home.

I couldn’t be more proud of this girl who pushes through every day to do what she loves.  She got rewarded yesterday by riding her favorite horse.  I am going to talk to her instructor about leasing in the next few days.  This will allow her to get on her horse at least 1x a week.  This is what she loves.  She doesn’t ride for any other reason than she simply loves it.

So for this chronically ill kid I am going to move mountains and make an already impossible schedule even more nuts to allow her to do the one thing that brings her more joy than anything else!

What it means to have POTS

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My Favorite POTSie got to be a part of something this week that meant she had to push herself every day.  She didn’t have to push to learn or do better, she had to push to get up and go at 9am when she is not really functional before 12pm.  She pushed herself to do something that she truly loves and excels at.

She went to theater camp! She got to play a role in a piece of  HighSchool Musical that was way outside her comfort zone and she did all of this while struggling with very high heart rates.

Today they did the ‘review’ of what they had learned and she had her POTS shirt on.  This brought tears to my eyes as I realized that even with a chronic illness she is still doing what she loves.  She is getting up and going when her body is screaming for her to go back to bed.

Today it was Nicole 1 POTS 0.

 

Where does the time go?

A friend posted today that her son is turning 6, I’ve watched this family struggle with this horrible disease that takes away a childhood and makes parents rethink their entire process.  This amazing child has so many fewer safes than Nicole but still his parents are focused on him just living his life.

This is also where we are with Nicole pushing her boundaries in a safe way all the time understanding that this will be her normal forever.  There will not be a time when she will sit in a restaurant and simply order off the menu – she will also either carry her food, or request very specific items to ensure she is safe.

I looked at her this past week and said she’d have to live in an apartment when she went to college in order to eat. We are thinking about how we send her to Spain for her Jr. Year of highschool.  Nicole is already creating a plan for her to go to college.  This is her life, and she gets to live it the way she wants.

I can’t believe we’ve been dealing with the FPIES dx since she was 4 and POTS since 10.  Many of our friends are simply going to a holding pattern with the FPIES.  No more food trials and focusing on the quality of life for these kids instead of pushing new foods on them.  This is where we are as well.  She doesn’t need food to make her life better she needs life to do that!

We will focus on the memories we are making and making sure that her life is lived to the fullest!

International Travel

Travel can mean alot of things, fun, excitement, worry, when you travel with a medically complex child it means all these things X100!  But that is what we did, we took our medically complex child out of the country! And not only out of the country but to Mexico! And she did amazing!  She walked a ton and only really had issues 1 day where she was tired. Now it is possible she just pushed herself but I really think the heat is so much better for her.

She didn’t fall apart until we got to Denver and had to wait in the customs line (silly mom didn’t realize how long that would take). Next time we’ll get her a chair and not worry about it.  Otherwise she did great.  She managed her entire process and was amazing.  She managed to eat in several places, our condo made her salads that were safe for her and she ate a ton of fruit.  I could not be more proud of what she did and how she did!

We’ll see how long the recovery will be but for now I am thankful for the opportunity!

Scary Moments

When your child has a chronic illness scary moments are a bit of a given.  You just never know when something ‘weird’ is going to happen.  Add to that fact that your child has a chronic illness that most doctors don’t know the full impact for and you get fun scary moments.

We had one of those on Friday, Nic and I were packing for our trip to Mexico and she had commented she wasn’t feeling great, but we push her.  She was bringing me shirts when she looked at me and said I am very dizzy and my vision is starting to go black.  I made her lay down right where she was and went to check her BP and HR. I was able to get a pulse in her wrist (which isn’t too surprising, her wrist pulse is hard to get).  I was gone maybe 30 – 45 seconds and when I came up she was white.  Her HR was 50 and her BP was 80/44.  When I took both again they were just as low.

I made her brother get us something to drink and pushed 24oz of fluid into her. I then asked her a bunch of questions while we put her feet up.  The goal being we needed to get her blood back to her heart and brain. This was a classic failure of her autonomic nervous system.  Her body wasn’t able to manage either of those at that moment.

The hard part was she kept telling me that she took her morning meds and how could this be happening.  How do you explain to an active, happy-go-lucky 12 (almost 13yo) that her body is conspiring against her.  That her body doesn’t get the communication part.

Think of this way, you and your significant other are driving on vacation and he’s navigating.  He tells you to turn green and go grass.  You have no idea what he’s talking about so you start to panic.  Add to that you feel like you are in a terrible part of town and things get worse.  This is what our kiddos deal with every day. Some worse than others.  For us, this is not an everyday occurrence but for some it is.

I am thankful it’s over, but I worry as we are taking her out of the country tomorrow that things could be getting worse… what ifs run through my brain.  This is a constant fear…

I pray someday that this child doesn’t have to deal with this crazy disease and that we find the right combination of meds that allow her to feel good. Until then we’ll be on this crazy ride.

Dreams that Don’t Come True

We all have dreams for our kids, we want them to grow up to be great adults, we want them to get good jobs and have families.  When I asked Nicole if she was going to have kids, she told me “It’s part of my long term plan”.  Yes my 12yo just told me she has a ‘long term’ plan. OK!  When my kids were born I can tell you I saw great things for them, playing football for U of M, getting great jobs and meeting amazing people, getting married and having kids.

Any parent of adult children will tell you that your dreams are often not those of your kids and that they will do what they want!  This has been true for my 2 oldest kids. One is working, loving life and has a great girlfriend, the other is figuring life out as an adult and on his way to college.  Neither are playing Big 10 football, but that’s OK.

I read a post recently from a mom whose daughter just graduated from high school, she has the same disease as Nicole.  It struck me because as I watched the kids march across the stage at PNHS (Class of 2017) there was one missing.  Her mom had made the decision earlier in the year to pull her and have her get her GED. You see she was just too weak to finish school.  Her disease had robbed her of the opportunity to do this.  What did I tell her? You don’t need a high school diploma, (cue my brother who ran IT for one of the largest electronics manufacturers in the world! with a GED!)

However, when it’s your own kid it’s different, you want different things, you want them to graduate and go to school.  I am preparing myself for the fact that my child will live life differently than others, she will do all the things that make her dream but they may look different than others and this is OK!

Sometimes we have to tackle not only the dreams but also the thoughts that threaten them.  I love that the mom in the article made notes about the things she thought her daughter couldn’t do.  OK She can’t do that but what can she do! We try to look at Nics life in ways of what can she do not what she can’t.  This isn’t always easy (or possible) but when it is, that is how we look at it.

Today I am going to remind myself of all the amazing things she can do and not dwell on the what-ifs and the why nots!

 

https://grownandflown.com/high-school-senior-sick-college-pots/

The lack of award; award

My child didn’t get an award, he went to school every day he did well in school yet he didn’t get an award.  Am I sad? Am I upset? No I am not, because life isn’t about getting an award for simply showing up.  People who excel get an award, people who go way above and beyond get the award.  Why is it that people thing everyone deserves an award?

I blame social media!

I have unfollowed people because they post hourly about their kids accomplishments. Ohh my kid got on the bus, oh my kid walked to school, my kid did their homework, ok yes this is sarcasm but still.

My kids don’t deserve awards for doing what is expected of them.  Simply going to work, doing their homework and getting their stuff done does not mean they should be rewarded.  When did this ever become an expectation?  I saw a post on FB today (and no I didn’t read it) but the title was why my kid didn’t get an award. Why? Because my kid didn’t deserve it!!

My boss tells me every day I am doing a great job, I am a superstar (I am not kidding) she’s a great person – the jury is still out as far as leadership is concerned. Here’s the thing, she’s my boss so guess what I respect her, I thank her and I do my job.  I don’t do my job because she tells me I am great at it, I do it because this is my job.

My kids all have their struggles, some are medical some are emotional and some are just being kids.  When they do something great I get excited, when they give above and beyond I praise them.  I don’t cry because they didn’t get an award, I cheer for those that did.  The kid who was the valedictorian for my sons class is a friend of our family.  This is a family we’ve known for over 20 years.  We’ve worked with them, coached with them and our kids have gone to school together.  I cheered for him when he graduated, I didn’t feel bad because he got an award and mine didn’t. My didn’t deserve the award, his did.

I don’t mind that everyone gets a trophy, honestly I don’t think it really matters in the long run.  However, I do mind when people complain because their child is sick and doesn’t get an award.  My child is sick, she does the best that she can! That does not mean she gets an award!!

Helicopter Parenting

Yes, I am a helicopter parent, yes I take pride in being ‘that’ parent.  Recently there was a misunderstanding that escalated.  I went to the person and I made sure my child got to do what she wanted to.  Why? Because every day my kid makes choices, and those choices often go to the side of NOT doing something.  Last night she opted to not go to church, she loves church but she had such a headache she didn’t go.  So when someone screws up and she may lose the option to do something I fight like a rabid dog to make sure she can do that.

However, when that happens her stress levels go way up and she crashes.  So yes I helicopter, I hover and I fight like hell to make sure she gets to do what she wants. She wants to go to six flags, we go, she wants to ride her horse, she rides.  Does this mean she may miss school or church? OK she still gets to go.  Being a child with a chronic illness is alot about making choices.  Think about a flow chart decision tree, if I do this, then I won’t do this.
I am OK with this, and I am OK with fighting like hell to make sure she gets to do what she wants.  I will continue to fight this fight until she is on her own or better.  And even then I’ll fight like that.

When you see a mom who is hovering, ask yourself “does this child have some special needs that require mom be close?” Because more than likely that’s the case.

Feeling all the feelings

I will remember this day forever!  You see it was 18 years ago that I was preparing for the birth of my 2nd son.  It was so different than the first time. I had been sick but not nearly sick as I had been, I had a great team of doctors who understood and I felt much better.  It had been a whirlwind few months, you see we moved back to Chicago in January as my father in law was dying of cancer.  He never got to meet this amazing kid and for that I am always sad.  Jonathan is named after his grandfather and I know that he would of made Roger so proud!  He was so small when he was born, only 6lbs, but boy was he long!  The docs said if we’d let him go to term he would be of been as big as his brother.

He was always my easy going kid. Quick with a laugh, wanting to make everyone smile and man could he bat those eyelashes when he wanted to.  While we struggled with his brother, he just took life as it came.  Excelling in so many things.  It has been such an amazing journey watching him grow up and being able to sit back and know that while it hasn’t been perfect he is ready.  It causes so many happy tears to think that in a few short months this little boy who would sit on my lap and make me smile will be off on his next adventure.  He is going to do amazing things!  I could not be more proud of the man he has become, but there are so many days when I want to turn back the clock just a bit.

There are so many memories that I will carry forever, and new ones yet to be made.  I just cannot believe that tomorrow he turns 18!