Work

Most of you know that Nicole works 2 days a week at the barn.  She mucks stalls, feeds horses, brings them in and out and gives them hay.  She does all of this under the watchful eye of the barn owner who sees this as a huge investment in today’s teens!

What I am blown away by is this is a child who struggles to get up in the morning, yet every Sunday she is up by 6:45 and dressed and ready to go.  She works outside in freezing cold, rain, heat and today ice.  Because we live in the weird world of Illinois where it was subzero on Wednesday and 45 on Sunday.  Which makes for very frozen ground and very icy footing!

She has boot covers that provide traction and she will wear those today as she takes horses out.  Just for reference, I went yesterday to switch the blankets on my horse. I had to bring him into the barn to do this.  He knew it was slick and he thought it was fun to push his Human around.  My horse is 20 so he doesn’t move real fast, but some of those horses are big, scared, powerful, and well horses!  She is going to slip and slide and probably fall today, yet there she is doing something that she loves more than anything.

When I was 14 I was thinking about babysitting, going to my youth group and participating in Bible Quiz Bowl.  My daughter thinks about work, and getting her job done.  I am so proud of this child who struggles every day with a chronic illness but puts her all into the job she is very proud to have

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Viewing the world

We’ve always said that Nicole views the world differently and that she will accomplish anything she sets her heart out to.  This past weekend at Blast Nic worked her tail off she sorted sweatshirts, she sorted muffins and she sorted keys.  All of these things are OK for a normal healthy kid but for a kid with POTS these can mean days of not being able to get out of bed.

While she was working and sorting and helping mom lead, someone asked how old she was.  She told the person she was a freshman and the person answered, In college?  Nope Nic replied in Highschool!  This adult was blown away that this child was so put together and organized.  I explained this is what happens when mom and dad run everything they get involved in!

Yesterday she was presented with challenging information from a friend.  She has had similar information herself and in typical Nicole fashion she has a plan to tackle it!  Of course also in Nicole fashion she had little empathy for her friend.  (Yes she is my kid)

What I love most about her is she attacks every problem head on and with a calm head.  She understands this is her hand in life but that it does not define who she is.  She has a plan and she intends to stick to it!

Take a note from Nic’s book and when life get’s you down stand up straighter and attack it head on!

2018 in Review

2018 started with a bang with us being in Florida for vacation.  We have enjoyed so many amazing memories this year!  Including mom going to Vegas for a weekend, and Nicole being involved in 2 musicals!

We bought a horse (I still can’t get over that!) and made the decision to pull Nic from school and allow her to attend online.

I can say that 2018 has flown by, and I still can’t believe that tomorrow we start 2019!  This year has been one of ups and downs but by far way more ups than downs!  We have been able to celebrate life with friends and even though we lost a few along the way (Sue Blackburn you will be so missed) God has really blessed our family!

I can honestly say that our family is really amazing and while we do have our struggles we have been able to do so many things!

The people God introduced us to this year really are amazing.  From meeting Aria at Target, then finding out she attends our church to spending time with family in Michigan not once but Twice!!  Plus all of the kids we have met and loved on through volleyball has been so amazing!

I can’t wait to see what 2019 has to hold for us, maybe another horse?? (Ok mom really wants her own lol) But I know that it will be just as exciting as 2018 was!

Here’s to another amazing year and to hoping that 2019 only brings you Joy!!

The circle widens

This past week is always a struggle.  It marks the anniversary of my mom’s death. It is also the marker that for me means that Christmas can finally happen.  My family knows that for me getting past December 14 is a milestone that comes and goes every year.  Usually without much fanfare.

This past week I got a Facebook message from someone I have known for years.  She has a beautiful voice and used to sing on stage at our church.  I actually think about her often she was just one of those beautiful people who had a beautiful talent.  She reached out to tell me she had been diagnosised with POTS and was scared and worried about that that could mean for her.

I can’t say that I was excited to get that message.  However, knowing that doctors are starting to recognize the disease is a good sign.  Hopefully it will mean people won’t go years without figuring out what is wrong.

While I am not excited that our circle has widened I am happy that I was able to help someone…

POTS Reared it’s Ugly Head

We have been doing so well, with Nic being home schooled we are seeing alot less ‘bad’ days and alot more good days!  This has really allowed her to be involved in more things and be successful at all of them!

However, this weekend POTS showed up again like the monster it is!  Saturday we took her and her friend to dinner in between the 2 shows. She was bouncing and talking really fast, I knew then that we were in for a fall. I was hoping she’d make it through to the end of the show, but that was not to be the case!

We dropped the girls back off at 6:45 and walked around down town naperville. At 8:05 (the show started at 8) I got a call from Nicole saying she was running a fever and was very dizzy.  She told me that she was fighting to stay awake and wasn’t able to even sit up.

We rushed back to the theater to find her laying on the floor.  She missed the 2nd show on Saturday and the final show on Sunday.

It get’s easy to forget that she has this disease!!  This weekend we were reminded!  The big lesson from this weekend is simply that we aren’t letting POTS win!  We have to make adjustments but we are not letting this disease win!

Strong vs Strength

When I hear the word strong I think of the body builders and how strong they must be to lift the weight they are lifting!  When I hear the word strength I think of how strong something must be to do that particular task.  It could be the strength of a horse to pull a plow or that of a rope to pull a car.  However most of us don’t think of the word strength when it comes to a person.

We do often say that person is so strong to deal with that illness or issue but I don’t think we really know what it means for a person to be strong!  When I look at Nicole I see strength.  Not because she is physically strong, although she is!  But because of her mental strength.  Her ability to fight through fatigue that most of us can only imagine blows me away.

This past week we had a busy schedule.  Nicole worked at the barn 3 days, rode 6 days, and on Thursday we visited the Joliet prison (If you want to hear about our experiences let me know).  That meant several days of pushing her body physically and mentally. By Saturday she was exhausted but she still got up at 7 with us and coached volleyball, and then visited a friends haunted woods Saturday night.  By Sunday, I wasn’t sure she was going to be standing however she got up, went to work and then rehearsal.  She was in bed by 6.

Not once did she complain that she was too tired or that she was going to fall over even though I knew that was what she was feeling.  That’s strength, pushing yourself past what is possible and then going further.  It also means knowing when to take a rest and today is her rest day.  She’ll sleep until she gets up and she’ll have a rest day.  This is OK, it’s ok to be strong and then have a rest day.  For me I’ll be working but I will also be in awe of this person who struggles with so much but pushes herself farther than most adults!

 

It is NOT all in your head

A friend’s son was recently diagnosised with Bronchiectasis.  This journey for them took several years and at least 1 doctor telling them it was all in his head.  We didn’t get the ‘it’s all in your head’ talk.. however I know many many families who have.

I’ve also questioned the symptoms myself, is this really happening?? I don’t understand why this is the go to for so many doctors.  We can’t figure this out, it must be all in your head.  I know sometimes it is, sometimes it is in your head.

Funny side story 🙂 Our dog threw up on the carpet today.  Nicole came up to tell me and she was pale! She said, mom I can’t pick it up today.  I told her it was fine I’d get it.  She was frustrated because she couldn’t clean it up without gagging. I told her that sometimes we get in our heads and we can’t get out.

I know there are times when anxiety has gotten the best of me and I have not done something because I simply can’t go.

Let’s try to understand why docs go this way.. and educate them in a good way that just because they can’t figure it out, doesn’t mean it’s not there.

Horse Updates

Its Friday and our awesome horse Duke or Lil Duke as he is known at the barn is doing so well.  He still has a long way to go but he finally has a buddy!  Glitz is another paint and they look so similar.   I mean who doesn’t love this horse??  Last night he did so well and he has the best facial expressions you can really read what he is thinking and most of the time, it is “what do you want now” lol… anyway horse therapy has been the best for Nic and she really pushes to do everything she can to meet this amazing horses needs!  So let me leave you with this super cute picture and imagine him saying “please stop taking my picture!”

glitzanduke

Being an introvert in an extrovert world

For anyone who knows Tony and I, you know that we are very outgoing.  We will talk to people anywhere and I mean anywhere!  We love to do things that pay it forward from paying for groceries for the firefighters to buying breakfast for the cashier we know at our local grocery store.

However neither of us started this way, I was in counseling with I was little because my mom thought I was “to shy” and Tony didn’t really find himself until he was 16.

We have raised all of our kids to be outgoing and friendly to the world.  Each one of them has taken this in a different direction and probably Jon is the only one who is the most like both of us.  This is probably because Jon was 2 when Tony and I met and this has been his whole life.

When Nic came she essentially spent the first 3 years of her life at church.  Being passed around, by everyone!  I love the story of watching our teaching pastor feed her cut up grapes when Christmas morning because mom and dad had to work.

We saw early on that Nic didn’t like crowds.  She would fall asleep the minute the music went up, if we went to a large event she would find a corner to sit in until she was comfortable.  I will admit it drove me NUTS! I didn’t understand why she wanted to sit and watch a  movie when she could get her face painted or play in the bounce house!  As she’s gotten older I have learned that this is really who she is.  She’s an introvert!

She is OK if the crowd forms around her, but not if she has to walk into it!  She also will shy away from large events if she isn’t comfortable.  I realize that being an introvert is more about genetics than environment and she is really just made this way, I just worry that maybe she is this way because of her health issues.

From an early age she’s been excluded, not to be  mean but for her own safety.  She didn’t attend birthday parties until she was 10, she’s only had a handful of sleep overs and those are always with close friends who can handle her health issues.  She’s had to grow up differently from other kids because it simply wasn’t safe for her.

Kids with chronic illnesses have to learn to cope on levels that most kids and adults will never have to learn.  They have to learn to deal with being different, being looked at , and even bullied.  Nic has grown to be an amazing person!  She has a huge passion for animals and especially horses.  She is very empathetic which blows me away because I am not! (her dad is tho!) She never gets frustrated with her friends and their drama and she is always willing to pitch in !!

Learning to live with an introverted child is HARD!  I am the go go go person, I want to be doing it all and seeing it all!  She is more the child to hang back, she’ll go with me, however given a choice she’d probably stay home.  Which is why I don’t always let her choose!!  However, I have to learn as well to balance the go with the stay.  That way we’ll both be healthy!