Humbled…

I have a few followers, some I wonder about – they appear to be serial bloggers who do this for the money.  And then I wonder – why follow me? I don’t do this for money or advertising dollars. I do this to A: keep myself sane and B: tell what life is like with a chronically ill child.

Today someone started following me – not just someone a Vet, not just a vet an Equine vet.  Is this divine intervention? God’s way of saying you need to talk to this person?  Maybe!! Because A: Nic wants to be a vet and B: Nic wants to be a large animal vet!

So go follow Ambo Vet Life because this person is AMAZING!  Not because they are a vet or a horse person ok, that’s probably why LOL

Here’s to what is next in our life and to my child overcoming to become the best damn Vet she can be!!

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The many faces of POTS

This week has been one of those weeks where the saying “if it can go wrong it will” seemed to be the theme.  Starting with my job being totally nuts, then adding in theater camp and 3 days of riding and well you get what we all like to call the definition of insanity! Thankfully it’s all coming to an end today, Nic made a ton of new friends and learned a bunch.

Theater is one of those hidden gems, not because you get to see so many different things but because of the things it teaches you! It teaches you to be in the moment, to improvise and to go with the flow.  Nic has always been quick on her feet but this allows her to hone those skills.  These are skills that will take her well into being an adult, leading a meeting and even interviewing for jobs.

However, with anything like this and a kid with POTS you get the ugly down side as well.  You get the extreme exhaustion, the pushing until you drop and then the very low blood pressures and other side effects.

Yesterday on the way home from the barn, and of course I am on a call with a client – Nic is just about fainting in the car.  For some people this would be a moment of panic, for me, it’s a turn the AC up as high as it will go and drive just a little faster.  Get her home, give her some steroids, water and take her vitals.

The fun(interesting) part is that I took her BP laying down it was 96/45 and her HR was 72 not terrible when your norm is 90/60 then I had her sit up (not stand) just sit, bp went to 95/72 but her heart rate went to 95.  While not a 30 point leap we didn’t have her stand AND we didn’t wait very long.  This is POTS the body’s ability to regulate to keep the blood pressure and heart rate in a range that it can handle.

Even after almost 4 years these numbers still blow me away.  I am still surprised that she isn’t just better some times.  I guess because for the most part she does look OK – that when she doesn’t I am reminded that this is a chronic illness and not going to go away.

Today is the last day of theater camp and then tomorrow she sees the doctor.  (First time in this scenario so that should be interesting) and then on Saturday she has a sleep over with her BFF.  In the end – she’s just a normal 14yo with really really weird vitals

Not a reflection

As a parent we tend to believe that we have control over EVERYTHING our children do – news flash – we don’t.  From the moment they arrive on this planet God made them with their own special set of traits.  Some of those may end up driving us totally crazy but they are made in God’s own image.

There are times when outside factors influence our kids, and we don’t always have control over that either but new’s flash parents – you can’t control everything your kids do!  (I Know crazy!!)

A friend posted this today
“There are a lot of really great parents who have worked really hard to be great parents and sometimes they raise kids who make terrible choices” This maybe a shock to those of us who think that we have control over everything our kids do.  We don’t!  We can guide and steer and teach but we can’t control the choices they make.  Just like God can’t control the choices we make either.

So today parents – remember you are doing the best job you can and there is light at the end of the tunnel.  Your kids may take longer to get their than others but they will.  Our oldest is working towards a great career and he is 30!

Reach out to those around you, you may be surprised to find that they are struggling with similar issues

Laughter is the best medicine

We have a running joke at our house in that I live to go on vacation and Tony lives to KEEP me from going on vacation. It’s not quite that dramatic lol but close!  I grew up traveling and he did not so for me it’s in my blood!  For him, he often is the practical one who thinks about all the things we aren’t getting done.  Again it becomes a balance!

So this year, I was ‘banned’ from planning a vacation.  Probably because A: We went to Mexico last year, and Florida, and this year I spent a weekend in Vegas.  SOO we compromised and decided on St. Louis. Its close, cheaper, etc 🙂

First of all it was HOT, I mean like 100degrees HOT, however we saw some super cool stuff! Being the crazy person I am, I found that (insert DUH here) the route to St. Louis is Route 66!  SWEET!

We stopped and drove over the original brick road, we saw some super cool rabbits, both the car and the animal kind, we visited some Indian burial grounds, and walked up a VERY large mound.

Most importantly we laughed!  This to me is always the hallmark of a great vacation is did we laugh! And we did!!  The kids laughed at my coaster face (just ask them I have the worst), we laughed while we played games and we laughed as Nicole figured out the escape room!

I can promise you I am already planning for next years trip (and the short overnight one we are doing in Downtown Chicago!) But the most important thing is we laughed!

The next time you are worried or struggling take a step back. You don’t have to go someplace huge, it can be to Starved Rock or even the local forest preserve. But take a day and get away! I promise you won’t regret it!!

Anti-climatic

How many times have we wanted something to be a really big deal? I know I am a big deal person! I want to make EVERYTHING a big deal, my family does NOT follow in this!  Most of the time I don’t care and I make it big anyway! Birthdays? Go on for a MONTH! When Jon turned 16 we did 16 days of turning 16 and every morning he got a new little gift.

Sometimes stuff is just meant to be well just there.  It’s not meant to be a big deal, the world has continued on while we have struggled or fought or something and beyond our immediate family most of the time the rest of the world isn’t aware of our struggles. It’s just anti-climatic!

I think sometimes living with a child with a chronic illness you end up making everything a big deal and often times that’s because it has to be.  Weird rash, what is happening now, strange mark, we watch it closely.  Everything becomes a big deal simply because you don’t know what shouldn’t be a big deal.

We try very hard to play things down, when in my head I am totally freaking out.  Funny story Nic shaved an area on her body that when shaved often causes irritation.  She showed me the ‘rash’ and I told her it was from shaving and then smiled because we’ve all been there.

I think there are times when we want the world to make a deal out of something. We want them to SEE that something has happened and what we fail to realize is that for them nothing happened, it’s just a normal day…

But Why?

We are super blessed that all of our friends are super familiar with what Nicole has and are always very accommodating when we have to change plans or direction. And since our family lives so far away they don’t get to interact with us as much.

This weekend we traveled to Michigan where we spent time with family and this was the first time that family had really been exposed to what is going on with Nic. It made me realize that there has to be more awareness about people with chronic illnesses and that awareness has to start young!

Sometimes I just want to say ‘no she’s not super tired’ and ‘yes she’s still sleeping’ (even tho its 1 in the afternoon) This isn’t by choice, she isn’t lazy and has decided to stay in bed, she’s bone tired exhausted.  Think about your most tired moment, maybe you were up for 12 hours with a sick child or even 24 hours.  Now imaging that times 10 and EVERY DAY!  There is no magic cure, there is no pill that will make her better and some days are worse than others.

So today I am going to be thankful that I have friends who understand and family who tries!  But how do we share with people what this disease is and looks like? How do we make people understand that this isn’t ‘normal teenage tired’ this is so tired I can’t wake her!  (just let that sink in – I physically cannot wake her up!!)

So I’ll leave you with that, but I am going to continue to educate!

Stories

On a Facebook group I am a part of a mom reposted this blog

https://www.postpartumcovergirl.com/new-blog

I have to say that it was not an easy read.  Mainly because this is our story.  Almost to a T!  We still struggle with feeding Nicole, she still has issues that I am not sure we’ve fully discovered yet.  However, it is amazing how God makes these kids.  The one thing that struck me with the child in the blog is how resilient he is!

We tease Nicole all the time that God mad her for us.  That He created her to be exactly who she is and then gave her to us.  I firmly believe she was supposed to be ours.  The way we manage her is such that its less about her illness and more about her.

We don’t focus on what she can’t do but on what she can, and we take every detail in stride.  We don’t go crazy over little things and trust me if we did I’d be a total and complete mess.  I am already a total and complete mess with that child I don’t need any help LOL

Nicole isn’t going to magically get better, she isn’t going to outgrow her diseases so we have to learn to live within the boundaries we have been given.  What I am blown away by is how God has put people and animals in our path that have the same boundaries. She has a horse who is afraid of the farrier (horseshoe guy) and I don’t mean like a little afraid I mean the man walks into the barn and Dixie would run out an open door given any chance!  She has a dog who is afraid of her own shadow and LITERALLY any noise she doesn’t understand.

Nicole (and Dixie and Alexa) all work within the boundaries of how they were created and that is SO OK!  Because God made them this way and then in His Infinite wisdom he gave them to us!!

Inside vs Outside

I was thinking today about how often we judge people by how they look.  I did this the other day and I am not proud!  Nic and I ran into Jewel and a guy in a pick up truck was pulling out of a handicap spot.  He had firefighter plates and looked to be a pretty young guy so I made a not so nice comment about why he was parked there.

My ever intelligent (knows way more than me) 13yo proceeds to say “well mom maybe he has an invisible illness like me” OR “maybe he was just turning around” Ok smarty pants point taken!!

This got me thinking about how often we judge people by how they look.  Tattoos – well they must be a dumb, Work boots and work clothes – they didn’t go to college.

I know that our gut reactions are often just that a gut reaction- however what we do with that reaction is what sets us apart.  Think about it, maybe that person covered in tattoos is the worship leader in a church (Ours is!!) the guy that’s got the work clothes on and is dirty, maybe he has a college degree but he prefers to work outside!

The child who is standing alone, they aren’t being snobbish maybe they don’t deal well with crowds and need a few minutes to gather the strength to interact!

When I was younger people told me they thought I was ‘stuckup’ (yes that’s a total 80’s term) because I didn’t talk to people.  It wasn’t because I thought I was better, it was simply because I wasn’t comfortable talking to everyone.  While I am way better at it, I am still more comfortable with people I know than total strangers!

So take a moment, that person who looks different, is standing back, and isn’t interacting smile at them. Say HI!  Ask a question about what they do! You might be super surprised by the answer

Milestones

Tony asked me yesterday if I ever thought we’d be here, watching our child walk across the stage for 8th grade promotion.  I told him that I don’t really think that way. I don’t wonder if we’ll get to a certain point with any of the kids, it just sort of happens.

With Nicole every step has been a struggle, moving from grade to grade and teacher to teacher has presented new issues to handle and overcome.  However, with Nicole I never doubt she’ll overcome those.  It’s almost a foregone conclusion that she’ll get there and we’ll see her take the next step.

Last night I was reminded that these moments go very fast and that in the next blink we’ll be watching her graduation from High School

When her brother reached this point I told him and his friend that these next 4 years will go so fast they won’t believe it.  On Graduation Jake told me that when I told him him that he didn’t believe me, he said now he does because it was the fastest 4 years of his life.

These next 4 years are not going to be easy, they won’t be without missteps and struggles, however these next 4 years will be the absolute best of her life.

I do not know what the next 4 years will hold, but what I do know is that it will be full of surprises and laughter.

So here’s the next 4 years!