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.



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)


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 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!

Rare Disease Day

There are months for diabetes, cancer, days for puppies, coffee and heck today is National Pancake day! (Yes this is a thing and YES my parents will be at I-Hop for free pancakes).  Tomorrow is Rare Disease day.  Why is this more important than any of those other things – and yes dad even more important than pancake day??? Because 1 in 20 people will suffer from a rare disease.  These people will suffer while the medical community struggles to figure out what is wrong.

They will tell their patients it’s all in their heads, that they aren’t really sick, that if they worked out more, ate better, slept more, slept less they wouldn’t be sick.  HUH?  I mean don’t get me wrong eating better can help you feel better and sleeping (more or less) will make you feel better but it isn’t going to cure you.  Your illness isn’t going to magically go away – you may manage symptoms, you may even have remission from them, but the underlying disease will still be there!

What Nicole has, it isn’t rare, it’s rarely diagnosed!  Its often looked over because doctors don’t know what it is or they aren’t willing to find it.  They don’t want to look deeper than the surface, they maybe don’t have time or maybe they are insecure about not knowing.  You see doctors are taught that they know everything! They are the doctor!! Guess what they are human – Crazy I know!!  They make mistakes, they mess up, they don’t have all the answers even though we want them to!

Rare disease day means creating awareness of for things that doctors don’t know.  It means as parents and patients we must educate our doctors while understanding they are doctors and they do know more than we do (sometimes) that they went through ALOT of school and we should respect that.  I know many of us of had doctors blow us off, tell us we didn’t know what we were talking about.  Some people I know have had their kids medically kidnapped and for those medical professionals I have no words!

This isn’t about them, this is about the remaining 90% who truly are trying to understand but can’t.  Maybe because years of schooling have taught them that they have to know it all, or maybe it was their teachers.  However, it’s our job to help them learn different.  Help them know that our kids are different that they don’t know everything and maybe, just maybe we know more than they do.  In that moment that we are a team, we are on a journey together and that may mean fighting in the backseat, arguing about which turn to take and when we should stop for food, but we are on a journey together.

Rare disease day means teaching each other how to work together and how to raise awareness for everyone!












That letter

We all dread that letter. The one that says we owe more than we thought or that we didn’t get into the college we wanted.  We recently got a letter, it seemed very innocent. So much so that I wasn’t going to open it. I figured it was junk, nothing to worry about.  Except it wasn’t junk and it was something to worry about.

You see our doctor, who is amazing, she’s beyond amazing, she’s on the same level as the best doctor God has ever made.  The one whose sister in law is my daughters social worker at school, the one who listened when everyone else didn’t. The one who started saying we are looking for a zebra in the horse barn and then went on to say we are not just looking for a zebra but ‘the’ zebra.  The one who agreed to let us go to Mayo even though she didn’t think we’d get answers, the one who signed the handicap placard and agrees that our child shouldn’t get vaccines or do gym.  Yea that one!

We got the letter that said she had left the practice she was part of. No why, no explanation, no where she went just that she had left.  The letter went on to say that we had been assigned to a new doctor.  Are you panicking Yet??? I am! I am in complete panic, I don’t have a doctor who understands whose been on this journey with us for 12 years, 12!

Now I have to find a new doctor who will understand, who gets what my kid has.  I have a name he’s supposed to be really good and will do weekly IV’s and is supposed to be really good (did I mention the really good part).  Except I can’t call him, I can’t, its on my list of things to do, but I just can’t.  I want to, I want to schedule an appointment and go see him, but what if?  What if he won’t fill our the handicap placard paperwork or sign the no gym paperwork.  What if he doesn’t understand that we have decided to not vaccinate and fill out the paperwork for school.  Then what?

I’ve talked about medical kidnapping before, and this is a very real fear for me.  This doctor has come very highly recommended from a friend. Her child is sicker than mine and she raves about him. However, he’s not our doctor.  He’s not the one we’ve gone to for strep throat and cut ears, and allergic reactions and FPIES and POTS and the mayo clinic.  He’s not the one, who started this journey with us so many years ago… and now I have to go to a new doctor who doesn’t know us, doesn’t know my kid and just doesn’t know…

Life sucks sometimes, and I realize that in the whole scheme of things this is kind of minor but in my scheme of things its not so minor and its not so little… it just kind of sucks!



As parents we all look forward to those milestones.  From the first smile to sitting up and walking and first words.  We look forward to the first day of school and cry as we think about the last.  We lay awake at night worrying about driving while inside we are super thankful we have someone to run errands and pick up siblings!

When I think about milestones with my kids I worry as much as I celebrate them!  However, we hit a milestone yesterday that I am not sure I ever thought would be one.  My child ordering her own medications.  Yes, I set her up and taught her to do it, she needs to own this and its part of growing up.

This milestone is about teaching to her to manage on her own, its just not a milestone I thought we’d have to reach…..

Flying Lead Change

If you are scratching your head as to what that is, don’t worry I was as well!  When Nic got in the car last night she was as excited as I’ve ever seen her!  She had done a “Flying Lead Change” with Dixie (her horse).  She went on to explain that this ‘change’ gets the horse to hug the barrels tighter and she did the barrel pattern in 14.5 seconds.  For reference the girls at the rodeo do it in 13-14 and the girls we saw at the local rodeo do it in 30.  So this is REALLY good!  Of course she knocked a barrel over which adds a few seconds on as a penalty.

What I loved about last night, besides learning what a flying lead change was; was that I saw a light in my childs eyes that I have not seen in a VERY long time!  She was beyond excited that she literally bubbled!  We struggle every day with getting her up, and awake we avoid things like showers because they simply wear her out.  But this, this made her so so happy!

Horseback riding is something that I don’t think I could ever take away from her.  The connection she has with Dixie is beyond amazing and something that I cannot describe.  The barn owner has a disease similar to Nicoles.  So she understands that there are simply days where getting up is not possible.  Nic generally rides on Monday’s but we had to cancel because she wasn’t able to stay awake.  (For the record – she will ALWAYS push through and for her to agree to let me call her out – she must of been really really down)

So we got moved to Tuesday at 4. She usually rides with 2 other very experienced riders and she has to work to keep up.  Last night she was alone and her training was able to work with her directly to get this skill taught.  I told her that I would pay extra to allow her that 1×1 time anytime she wants!!  (The barn doesn’t charge extra for this btw)

Last night my child got to do something she loves more than life!  Something that puts a fire in her like I have never seen!

For those of you who don’t know who Dixie is (she’s not really ‘ours’ but she might as well be!)  Here’s a picture!  (And yes here she is riding bareback) .facebook_1518617469040

Big Brothers

I never had big brothers (or sisters) since I was the oldest child!  Nicole has 3 big brothers and she loves them all!  However her favorite is Steven (or Steve as his friends call him).  This big brother turns 22 today! (Yes I feel very very old) Steven as I will always call him came into the world with an opinion and work ethic that I don’t think I’ve seen in any of my kids!  He also does not like change!

This child who came into this world the size of most 3mth olds has continue to grow and capture my heart!  When he was little he would tell people we lived at the ‘Tel (Short for Hotel) as his dad was a Chef for Wyndham we moved ALOT!  Chicago, Atlanta, New Jersey and finally back to Chicago.  His life was not without struggles including 3 head injuries at an early age.  He also suffered from similar issues that his sister did, we just weren’t sure what it was at the time.

He also had an opinion and wasn’t afraid to do what he wanted even at an early age.  He walked before a year, but didn’t talk until he was almost 3 (he is still a pretty quiet person) but his work ethic always blew me away.  We’d punish him and tell him to clean the bathroom he do one and ask if he could do another.

Tell him no to something and he would get it himself (not always the best choice) He sees the good in everyone, loves to surprise his little sister and loves his girlfriend more than anything.  He was never a mama’s boy, he looked up to and idolized his dad (which I still believe is the most amazing thing ever)

He tortured his little brother but now double dates with him and they are taking their dad fishing in May for his Christmas present.  This child who is now over 6ft tall and so so big has grown to be an amazing person, man and friend. Always willing to go the extra mile, never afraid to tell you what he thinks, (even if he should maybe hold that back) and willing to love life!

I will never forget the days leading up to his arrival!  We had no idea what we were doing, as most young parents I suppose! I do remember going to the mall and buying cat food so we wouldn’t have to go out after he was born. I remember going to the hospital in the middle of the night because we were going to be induced in the morning and I remember sleeping through his first 6 hours on the planet!

The pride his dad and grandfather had for him was beyond words!  His grandfather passed away when he was 3 but wow that man loved that child!  I remember going to his baptism party at his Great Grandma’s house (yes she is still around in fact the kids have BOTH Great Grandmas around) And Roger carrying him around the entire time we were there.

I remember this little curly blonde haired blue eyed boy who cried when mom made him wear this very funny dinosaur costume on Halloween (yes I am mean) I remember a child who loves his Packers (still does) and wants to learn about how everything works!

We have not always had it easy!  Some of my choices have made our relationship rocky but the love I feel and have always felt will never change.

The fact that he even arrived is a miracle that I do not take for granted any day! I know God has amazing things planned for this not so little boy (man) and I know that he is making an impact on this world!!