Blue Feet

In normal people when something like a nail turns blue you expect trauma or something bad.  When my kid has blue toe nails you just shake your head and laugh.  I mean who else would have random symptoms and then blue toe nails.

I have always suspected that nic has Raynauds “Raynaud’s (ray-NOHZ) disease causes some areas of your body — such as your fingers and toes — to feel numb and cold in response to cold temperatures or stress. In Raynaud’s disease, smaller arteries that supply blood to your skin narrow, limiting blood circulation to affected areas (vasospasm).” taken from https://www.mayoclinic.org

We’ve seen Nic’s fingers turn white from being in the cold, even temps as warm as 50degrees can cause symptoms.  This was the first time we saw it while she was inside.  She had been out swinging but we hadn’t seen her toe nails go blue.

I know it’s also a sign of EDS, which we’ve suspected for a while… Oh the joys of having a medically complex child. On a good note, she’s made it to school 3 days in a ROW

nictoes

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Whats your Armor?

Nicole came home today saying she gets to wear her cowboy stuff to school, because its Western day (or something) Of course as she is going on about wearing her boots, and jeans I am still thinking why are they having Western day in Middle School – but I digress.

She then proceeds to tell me she is super excited she gets to wear her armor to school. At this point I stop doing the puzzle I am working on and try to catch up to what she is telling me because I am sure I heard her wrong.  And I hear Armour (as in under armour) Nic has a few sets she wears riding, so I am thinking why do you want to wear this to school.. I am sure the look on my face said it all!

So I ask her in that general mom voice that says (what the heck are you talking about) “Why would you wear your under armour to school?” She replies in all seriousness of a 13yo girl “No Mom, My Armor!” “You know, my jeans, my boots, my flannel shirt”

OHH this makes it so much clearer like mud, but OK!  So at this point I just smile and say good, glad you get to wear this to school.

But this whole conversation got me to thinking about our armor.  What do we put on that makes us feel strong and worthy?  When I have a meeting I put on my jeans, a sweater I like and heels. This makes me feel important and strong! I hadn’t thought about this being my armor.

God talks about us putting on his armor and being ready for battle, I don’t think this is much different.  Kids need feel strong in what makes them feel confident. For some this is dressy, for others its the uniform they wear on the sports field or court.

There is nothing wrong with finding strength in outside forces, clothes, make up, shoes. However, the issue comes in when we are finding all our strength here!  God tells us his armor is in His Word and in His promise.  When we put those on we can tackle anything.  I don’t think God gets mad if we get dressed up before we go to an important meeting, but if we fail to remember that HE is going with us, then we aren’t putting on the right armor.

Today I am going to watch my child put on her armor and get on her white horse (Ok she’s not white but they do have a white one in the barn) and I am going to watch her tackle her demons, demons noone should have to tackle!

And so it begins

We had our IEP meeting on Friday and while it didn’t go badly, it also did not go well.  There were veiled and no so veiled threats about ensuring Nic’s success in highschool.  Things were said like ‘well you’ll need notes for every day she misses, you know I could ask for that but I don’t’.. and they won’t like her missing as much as she does so you better be careful.

So what did mom do, research!  I talked to a few moms who have BTDT and the words I got from them were NOT good!  Then I did some more research and read the law.  (Working with attorneys all day long helps!) and guess what They can’t ask for a note every day she misses and they HAVE to! This is my favorite thing I found

“The school district’s obligation is to provide instruction based on the student’s needs. Fulfilling graduation requirements is a student need. The curriculum can be modified to allow for an independent study or to allow another course to be substituted so that the student can meet requirements for graduation”

The School district’s OBLIGATION!  I love that word!  That essentially means they are required to ensure she meets the requirements for graduation.  No I do not think this is going to be easy and I do believe we are going to have a significant fight!

What I have on my side is A: the Law! B: an advocate who is familiar with the school district and C: An attorney who lives in my neighborhood, is a friend and has kids either going to PNHS or will!

We may back down at some point if the fight gets to be too much for either me or Nicole.  However, until that point I am going to fight like they have never seen before and I am NOT afraid to take this all the way.

I will not allow us to be bullied or pushed around.  I know the law and I know that we have rights that the school cannot take away!

Pray for us, as this isn’t going to be easy and it won’t be pretty!!

New Doctors

We found out about 2 months ago that our doctor had left the practice.  It was one of those moments that most parents of medically complex children fear.  After a few calls I decided to take a chance and schedule an appointment with a new doc in the existing practice.  I chose her because she’s young and I was hoping that she would be open minded.

Yesterday we met Dr. Bolton.  She’s young, probably out of medical school by only a few years.  She seems to be willing to take us on and handle what we throw at her.  She also seems hesitant to make decisions.  This can actually be good since we don’t want someone to push us to do things we aren’t ready to do.

So far she’s only asking us to do the meningitis vaccine (which I am OK with) and she’s willing to do full home bound if needed.  She did fill out the handicap paperwork so that’s good.

I am withholding judgement right now and will wait and see how things progress.  She will sign the anti vax paperwork as well.  (Just a note this blog is not the place to debate vaccines as I am NOT anti vaccine)

So here goes to see how things progress…

Struggles

Everyone talks about the struggles in life. You know, finding the right partner, getting the right job, dealing with day to day stuff like paying bills, angry neighbors and crazy grocery stores.

No-one talks about the struggles of living with an invisible illness or having a child with one.  The worry that if you park in a handicap spot is someone going to leave a nasty note on your car, or that after missing 3 days of school is 1 more day going to really cause issues.

Right now we are dealing with finding a new doctor.  You see my child isn’t vaccinated (and NO this is not up for debate). In fact she got her first set until she was almost 2 and was diagnosised failure to thrive.   We found out that almost everything we fed her made her very sick (still does).  Her then doctor decided that adding vaccines just wasn’t smart.  Now her doctor has left – literally – GONE!  So we are trying to find a new one and doctors offices won’t even talk to us.  You see I am vaccinated, my boys are, and my husband is.  I don’t believe that they are bad, that they cause weird issues, I believe they are good and needed. (Again not up for debate).  However when you have a medically complex child you start eliminating things that could potentially make her seriously ill.

She doesn’t do sick like a normal kid, this is the child who ended up with a kidney infection with no symptoms!  This is the child who gets the random rash just because.  The constant headaches and other pains that are all associated with her autonomic disorder.  This is NOT the child you want to put weird chemicals in!

So now we try to find a doctor who will approve of our choice – and will sign the paperwork for school.  We see that person on Tuesday, but you see going to the doctor (a new one) is one of the most stressing things.  You never know if this is going to be the doctor who decides that you aren’t caring for your child properly. Or could this be the one who has something to prove and that is you are wrong.

You see when you have a just a normal kid (I know I have 2) you don’t worry about these things. You take them to the doctor when they are sick, you get them checked out when something isn’t quite right but you don’t worry that someone is going to take them because they don’t understand what is wrong!

Thoughts

Today is my birthday! I am 47 (I know SOO OLD) I don’t feel 47, most days I feel 25 🙂 Which is a good thing and mainly a testament to my husband!!  I have never been one who looked forward to the future.  Maybe because of the way my childhood went I learned that the future is never promised or it could simply be because of who I am.

I wonder though what Nicole sees as her future.  What does she see herself doing in 1 year, 5 or even 10.  She’s not a big planner either, that could be because of her parents (neither of us plan well LOL) or it could be because of her childhood.  Days that are spent in bed sleeping, dealing with headaches and dizziness.  Does she feel that she has lost something because of the way things go for her?

Does she lay in bed listening to music being sad because she should be at school or playing with friends.  She is generally a happy kid, generally she’s smiling, but I wonder if she lays awake at night, sad because of what life has dealt her.

Does shes struggle with this life, the limitations that are placed on her or does she see the glass as half full and life has mainly good?

I want her childhood to contain happy memories, ones that she can look back on as having shared with friends and family, not one where she fights headaches, dizziness and being so tired that simply getting out of bed is sometimes too hard.

Choices

I love Grey’s Anatomy, this isn’t a big secret in our family.  In fact I like all medical drama shows!  I like to have it running in the background when I am working.  While watching it the other day I was watching the episode where a man loses his wife, due to no fault of anyone.

Dr. Weber has Lexi Grey tell the husband that his wife will not survive.  He wants to teach her that being a doctor means providing bad news.  What he doesn’t know is that this man will return with guns and people will die.  I know this is just a TV show and that none of this is real but it got me thinking about the choices we make and if we’d make different ones if we knew the ending ahead of time.

Would the parents of the kids killed in Florida send their kids to school if they knew what was going to happen?

Nic got to sing last night on the StuCo Stage.  She came home with a headache – it’s PARCC Testing at school and this type of focus causes headaches because it makes her brain and autonomic nervous system work harder – hence the headache.  So I sent her to sing and she texted me at 8 saying we had to come get her because she had a headache.

Do I regret sending her? Knowing that she would come home early – that we would get the text to come get her?  I don’t know. I really don’t.  I am not a person who lives with regret. I do feel that you should live your life with some reckless abandon.  I don’t mean that you should drive 100mph down the road or not wear your seat belt but I do like the idea of not worrying about things I can’t control.

However, that doesn’t change the wondering if some decisions should be made over others.  Do I regret sending her last night? No, do I think Dr. Weber regrets sending Lexi in to tell that man his wife is dead? No I don’t because you can’t lead your life with regrets.

National PI(e) Day

Yes it’s national PI(e) day because it’s 3/14. But it’s also National Student Walk Out day.  We’ve talked a little with Nicole about this, the middle schoolers are not being allowed to leave the school – and to met his makes sense.  I don’t know that 11yos know whats going on.  The highschoolers will be walking out at 10am and I will be standing there to support them.

It is a sad state that our kids feel the need to do this to start to raise awareness around these issues.  I know there are many sides to every story and I certainly take 1 or 2, however today isn’t about gun control or the NRA today it’s about our future standing up and saying “WE ARE DONE!” We are tired of going to school scared and afraid that someone is going to harm us!

Today is about them saying to the leaders of this world, “WE ARE AWAKE AND WE ARE PISSED!” This is our next generation, this is the generation that will vote in our next presidential election. They are the ones who will be deciding who runs our country and government.

So today I will be standing outside PNHS Quietly cheering on our students who are taking a stand, who are saying “we are done going to school scared” and we want something changed.

Change won’t happen tomorrow or next week, and it won’t be some sweeping thing that happens and we all notice. It will be quiet, and slow, and will happen over time, but it starts today, it starts with us standing up and saying we support you!

I know alot of people are asking kids to walk up instead of out. I do agree that bullying is a strong factor, but this isn’t about that, this is about the 17 students who lost their life simply because they went to school one day.

I remember being maybe 20 and my mom calling me to tell me that there had been a bomb threat at my former high school.  My brother was a freshman at the time and she was so surprised that it had happened. I remember thinking wow, this stuff just doesn’t happen!!

Today my child has lock down drills where she has to practice officers being in her building. I have to tell her what to expect and how to live. I worry that maybe she needs a bullet proof backpack (yes they make such a thing).  Today is about standing up to the worry and the fear. Today is about supporting our students!

The Hard Horse (Borrowed from AZ Acres)

nicanddix2

Our lesson barn posted this and I love it!

Lets talk about the “hard” horse.

We’ve got some gritty lesson kids. They walk in the barn and say “give me the hard horse”. They smile when they look at the lesson horse sheet and see their name written next to “so and so”.  Their legs fall off during their lesson, they kiss the dirt once or twice, they have mini melt downs when things don’t go their way….. but they always come into the barn and ask for the “hard horse”.

Why?

Why ride a horse that you feel does not listen AT ALL? Why ride the horse with a mind of it’s own? Why ride the horse that says no when you say PUHLEEAASSSEEEE?! For the 12,000 time in one ride?

Our lesson kids do this because they are smart, and fierce and so, so strong. They know that by getting the hard horse, they are becoming the best rider they can be. They’ve learned to communicate through conflict and they have learned to compromise with a 1,200lb beast, that let’s be real, can do whatever the heck they please 90% of the time.  They know that for every lesson that will be a struggle, they will learn something. They will end their lesson proud of their accomplishments.

Now the crazy thing is, any horse can be the “hard horse”. One person’s unicorn, is someone else’s hardest horse ever.  That’s because each horse presents a different challenge to each student. A hard horse could be one that won’t move, has refusals, or goes too dang fast sometimes. Everybody battles different hardships.

We love our lesson kids that don’t want the easy way out, the push and go. They want real. They want to challeng themselves. It develops great riders. There is no mediocrity here.

#bestlessonkidsever #dobettereveryride #challengesaregood

POTS is alot like choosing to ride the hard horse.  Well maybe chose is the wrong word!  But POTS is like having to choose to go every day.  You choose to get up, you choose to move you choose to push pass limits that most people wouldn’t even think about having to deal with.

Nic’s hard horse is Dixie – Dixie has a mind of her own and a fear of EVERYTHING!  (real or imagined) Dixie refuses to go right – but Nic gets on her every week and makes her go right (when she’d rather go left) Nic makes her go right because they both have to learn to go the route that doesn’t always work for them.

Life with POTS is like this, choosing to go the route that isn’t easy, the route that means getting out of bed when you don’t want to, the route that says this headache isn’t going to stop me from living today.

POTS is riding the hard horse each and every day!  My fighter she rides her hard horse in real life 2  – 3x a week (honestly she’d ride every day if I let her) and in her illness she rides her hard horse sometimes 10x a day.  When she chooses to stay at school, when she chooses to go on even with a headache that most of us would be in bed with. She chooses to ride the hard horse.

So the next time life throws you a curve, are you going to choose to ride the hard horse?

Personally, there are days where I am riding Nikki and there are days I am choosing to ride Dixie!  Today I am choosing the hard horse!