It seems like only yesterday…

Wait was it only yesterday? OK not really but it seems that way!!  It has been 4 years since our faithful trip to the Mayo clinic.  I’ll never forget what her doctor told us “be prepared for them to not find the answers”.  I think I was pretty much head in the sand when she said that.  So I spent weeks gather medical records and copying stuff to spend 2 weeks in what Tony still refers to as the ‘Disneyland of Doctors’.  Was the visit a total success, not really but it wasn’t a huge failure either.  We got scans and blood work (so much blood work) and finally after 2 weeks and 2 sleep studys we were told your daughter could have this thing called POTS you need to stay until Monday for us to confirm.

I told the very nice and VERY old neurologist that we were going home and he referred us to a doc at childrens.  We made 2 appts with her, and canceled both. Her staff was rude, her reviews were terrible and I just didn’t want to think about it.  It would be the next summer before I looked up this disease and then did so many poor man tilt table tests.  Nicole would cry through all of them! Mom, my legs hurt, they itch, I think I am going to passout, I need to lay down.

It was then that I did some research and found Dr. Barboi and the POTS Facebook page.  I’ll never forget walking out of Barboi’s office with the official diagnosis.  I kept telling myself this can’t actually be what is wrong with my child.  This is what she has?? It is, and that has been confirmed by several doctors.  And it all started with a very long, very exhausting trip to Rochester MN.

Would I do it all again, I can’t really say for sure, but I can say that struggling for 10 years to figure out what is wrong with your child is nerve wracking.  It’s terrible having doctors tell you there is nothing wrong and that she will just ‘grow out of it’.  We know now that she won’t and we pray that she will learn to manage her symptoms.  Summer is best for us so we are looking forward to a few symptom free months.

The bottom line is there is hope! There are answers, you just have to dig for them. There is a saying on Facebook that a mom with a sick kid does better research than the FBI, I am quite certain this is true!  You want something found out, have a mom with a sick kid do your research.  We will pour over every detail ask every question and won’t stop until someone tells us the answer.  I know parents who are still waiting for answers for the medically complex child.

All I can say is that today is an anniversary I wish didn’t exist, but I am thankful it does.  Today I have a child who is on a cocktail of meds that keep her functional and for the most part of out bed.  She rides horses, sings and gets to hang with her friends for that I am thankful!!

Be the Teacher

In one of my family’s all time favorite Spongebob Episodes, SpongeBob teaches Squidward to “Be the Crane” and win in one of those crazy crane games.  Today, I met with Nicole’s teachers regarding the amount of days she’s been missing and a very smart mom said to pretend I am the teacher and I am teaching them about POTS.  While I didn’t get this advice until after my meeting this was pretty much what I did.

When you go into a meeting with your childs school it is generally NOT a good thing. They don’t call meetings to tell you, your child is amazing and they want to send them to space or move them ahead by 2 grades.  These meetings are generally, your child did something wrong and we need to fix it and by we, they mean you.  I have learned after having these types of meetings for 12+ years that what I need to do is pray before hand. You see this isn’t about me or my inability to parent.  This isn’t about me as a parent at all, it may feel that way, honestly this is your kid and you are probably pretty proud of him or her.  However, the school is trying to do 2 things, first is get your kid an education and 2nd follow the rules they have to follow. Whether we like it or not our schools our governed by a bunch of dumb rules that they have to follow.

What I have learned over the years is to acknowledge that they have to follow these rules, to question them when the rules seems invalid and to do all of these things with a sense of apprecation for them.  I don’t go into these meetings guns blazing ready to tell the adminstrator that they are so wrong and my child is the best darn thing since sliced bread. (I mean she is but hey!) I go in humble and ready to listen.  If something isn’t adding up right, I ask questions and will ask that they provide it to me in writing.  See here – this is so simple, if the administrator is wrong (yes people they can be at times) then they can save face. They can go back and say “wow I guess I didn’t understand the rule” or my personal favorite “we’ve decided to suspend this rule for now” (in other words, it wasn’t a rule but if we say it wasn’t then everyone will want it).

The take away is that they are people, who have feelings and lives and jobs. They take their job seriously and personally.  They want to be the best at it, just like you do and they get told day after day that they are terrible, they can’t do it right and they just plain suck! If we take a moment and go in as teachers, asking questions, pushing back nicely when we need to and being – gee I don’t know – adults – things are going to go so much better. Now this doesn’t mean that I am not going to fight for all the rights my kid has because I will.  I will fight for alternative school days and modified schedules 🙂 But I will do so with the information that the school needs so that when it comes down to it. I will have the documentation if they DON’T do what I need and maybe, just maybe they will.

 

 

 

 

The light on the other side

Most of you have heard me talk about the spoon theory.  The theory that says you have so many spoons each day and once you’ve used them up they are gone.  You can’t replenish them until the next day.   When you have a child in a full blown musical, it takes ALOT of spoons.  She’s used mine, her dads and her brothers. I think she may have even gotten some from the dogs!  This usage of spoons causes problems, like not going to school and sleeping 12 hours a day.  Well after 4 days of tech week and 3 performances packed into 2 days, I think we are finally back to our normal day to day spoon usage.  However, there will be another spurt of borrowing spoons because, well we like to push.  Let’s see how far we can go this time!

The good news is that she’s laughing and smiling today, altho we are still crawling most places.  This is an improvement from simply not being able to get out of bed.  Are we going to try to shower? Hell no!  That would take more spoons than we have.  We will probably NOT go do school tomorrow, but Thursday and Friday look good.  And today we even got our hair combed and dressed.  This is an improvement from yesterday when we barely got out of bed.

POTS is fun this way, everything can seem so normal, but on the inside its like running a marathon.  I read this today “POTS is like running a marathon on cobble streets while its 100degrees out side and you are wearing a snowsuit AND you have the flu”.  That isn’t an exact quote but you get the idea. So today we are going to the store, that will be our ONLY outing today, tomorrow we may go to StuCO and then on Saturday we’ll do it all again.  But then the musical will be over, it will have a whirlwind of 4 months.  But let me tell you it is so beyond worth it! To see the joy on my childs face while she does something that she loves is priceless. So if it means borrowing spoons from EVERYONE then we’ll do it and we’ll do it again.  And we’ll do it as many times as my child wants, because this is her JOY!

This is the Face of Chronic Illness

Nicole

This is the face of chronic illness.  This is the face of a child who performed 3 shows this weekend that included singing, dancing and just plain being awesome.  This child didn’t waiver one time, she pushed through even when you could see the exhaustion on her face.  She was amazing. They were all amazing!  I could not be more proud of her than I am today.  The downside of this is that she is sleeping today. She will go to her choir concert tonight and she will sing again. Then this weekend she will do 3 more shows and attend a concert.  Life is about balances and she is doing great!

Yes – Exactly this!

http://www.thejennyevolution.com/look-like-special-needs/

This is a great article/blog/whatever you want to call it about why my kid looks normal!  I loved the comment she makes about the fact that you only see my kid for a few hours a day.  What you don’t see are the tears when her eyes are hurting so bad she can’t open them. Or her crawling into my bed (and I literally mean on all 4s crawling )because she’s to dizzy to stand up.  You see her smiling and pushing through, but you don’t see that her heart rate is probably in the 140’s at that moment and while she is smiling she’s also wondering if she should sit down. You see her dance around and I see her trying to keep her blood pressure up high enough she doesn’t pass out.

You see her illness is invisible she doesn’t wear a note around her neck that says shes sick.  She just goes through life, and I could not be more proud of who she is!  But she isn’t always out playing with her friends so she does spend time on her phone with them.  Why? Because when I hear her giggle with her BFF Kayla I know that while she can’t be at Kayls’s house she can talk to her on the phone.  When she IMing with her friend Izzie I know that she is connecting with another friend the best way she can. Laying in her bed.

The next time, stop and ask – don’t assume because you just never know!

Celebration

When a normal kid gets a part in the play or sings the solo in the choir everybody celebrates.  It’s like yay your kid did something that just about every other kid has done.  I don’t mean to down play the wins, I just want to indicate that we celebrate when my kid gets out of bed.

This week my POTSie kid who can often barely get out of bed made her Stuco worship band and was asked to be the original millie in her musical.  These are small miracles, she’s not the lead she’s not going to be a rock star but she is doing things that normal kids get to do.  AND she does it all without making a scene without telling anyone about her illness.  I told her last night how totally proud I was of her.  How proud I am that she pushes through and doesn’t let her illness define her.

POTS didn’t win today, today normal, everyday kid won.  Tomorrow might be a different story, but not toady!

Not about Nicole

OK this isn’t always about her!  But I just read this amazing post from Jen Hatmaker. I love her, I love her witty funny way of writing. Today she posted a blog she wrote many years ago (I know this because her babies are older).  This post brought me to tears because tomorrow my baby turns 21.  Legal, adult and not my baby any more.  I will never forget his birth, it was less than fun. Heck his entire pregnancy was less than fun.  (Ask me about it sometime, its not a story I share lightly) But here he was all 10lbs of him.  And they sent me home in less than 24 hours. (I was one of the last drive thru deliveries in Wisconsin).  Then I was home with a screaming 10lb 1 day old child who was the same size as a 3mth old.
The first few days of his life, were traumatic.  In fact he has always been one for drama.  (no idea where that comes from).  He climbed out of his crib at not even 2 and refused to potty train until he was almost 4.  Add to that that he walked at 8mths, never crawled, would climb on anything and maxed his formula intake at 6weeks, he was one for the books.

Tomorrow when he turns 21 I will be the official parent of an adult and his brother isn’t far behind.  So read Jen’s blog and remember when she says those days go fast, she’s not kidding.  They go by faster then you will ever know.  Take time to make memories.  Drive to the beach, go on vacation and just enjoy them because you will blink and they will be adults!

 

http://community.today.com/parentingteam/post/i-wish-someone-wouldve-warned-me-about-these-big-feelings

Importance of a Good Support System

I was reminded today why having a good support system is so important!  – But first a bit of history 🙂 Last summer I received a call from Nicole’s primary care’s office indicating that we had to see her associate.  To see that I was upset was putting it mildly. I threatened I cried, I yelled, I said things I was not proud of.  We did end up seeing the associate, he looked like a deer in the headlights when he was presented with my kid, but we all survived.  Today, I saw Nics primary care for the first time in almost a year.  I learned why we couldn’t see her.  She had been hurt moving a patient, bad hurt.  She confirmed that the associate was freaked out by Nicole and alot of her patients.

But she is better and she is there for us, she listened today she took control and she offered her support.  This is why I love her, this is why I loved her since the day we met.  Our meeting today almost ended up with both of us in tears, because she listened to us 10 years ago. She listened when no-one else did and we ended up with a diagnosis and a child that is now over 5ft tall 5ft 3.5 in and 112lbs.  This is a miracle, this wasn’t where any of thought we would be today.

There will always be struggles with this 5ft tall 112 teenager 🙂 That isn’t going to go away ever, but I don’t have to navigate this alone I have a huge advocate in our corner, someone who reads her chart, knows whats going on and listens.  She actually told us today that she doesn’t want anyone else teaching ‘her child’. Those were her words, noone touches ‘my child’.  She has hundreds of patients, but I know when I call they talk to to HER!  Today she listened and offered advice and while we are adding another drug, we both agreed it was time.

Today I went to a doctor appointment without fear or anxiety because I knew she would be supportive and when I walked away I remembered why I love her so much.  She takes time away from her family and her life to take care of my child and there aren’t many people, professional or not who will do that

Tracking

This is one of those tracking posts.  As in I need to keep track of what we are seeing.  We spent last night in the ER.  4 hours isn’t really all that bad, but its in a tiny room where they put serious drugs into my 12yo.  Morphine, Raglan, Toradol and an IV drip.  These are not just because pain killers, these are serious drugs.  These are on top of the 4 other meds she takes regularly.  We also got a script for the toradol.  I can’t believe that this is where I am, I have to give drugs to my child to allow her to function, because if I don’t she simply isn’t capable of being functional.  I am not talking about being a super star, or staying awake for days at a time, I am talking about being awake, going to school.  Simply getting out of bed.  This is where we are, taking my 12yo to the ER for a headache that they had to treat with a cocktail of drugs to simply get her from a 10 to a 5.

When I say I hate this disease that doesn’t put things mildly.  I mean I hate in a way that I wish that this hadn’t happened to us, that this was someone else. Then I feel guilty because she doesn’t have cancer or diabetes.  Her friend has diabetes, and her mom is amazing.  She this wonderful English person who tells it like it is and just handles this disease that will take her childs sight at some point.  I want to be like her! I want to take life in stride, instead I am wishing that this was happening to someone else.