Questions….

Last night we had dinner with some friends and they asked the question that every parent of a child with a chronic illness hates to hear.. “will they outgrow this?”

Well let me see, my crystal ball is cloudy, the Magic 8 ball says “try again later” the tea leaves I read said I’ll live a long and healthy life, my palm reader said this line shows a great love.  So hmm I don’t know!  I don’t know what the future holds! Do you?

Instead of asking will they out grow this, ask how can I support you?  Or better yet, just say wow this must be tough, you are doing great with all the tough decisions you have to make.

I know for many of us, there are just certain questions that we hate being asked and for me it’s that one.  No I don’t think she’ll out grow this, because at 18mths we were told we’d be on the formula for 6mths max.  Its been 12 years.  Yes she has improved but then additional problems arise.  She is a medically complex warrior who struggles every day.  EVERY DAY! She has headaches, pain, extreme tiredness and yet every day she pushes herself to go.  Some days she can only go so far and others she can make it to the moon and back.  So no, we aren’t going to outgrow this, and yes this is her life, however it’s an amazing, incredible, beautiful life that she lives every single day way better than most adults I know!

And now a shameless plug! I started a new blog on leadership!  Jump over to https://wordpress.com/view/leadershipsimplifiedonline.com

and check it out!!

Advertisements

In the face of adversity

You know when you have a child with a chronic illness every day is an adventure.  You just never know what life might throw at you!  Yesterday we particpated in the POTS walk!  It was so much fun AND what was really cool was getting to hear a doctor talk to everyone about the disease

What was not so cool?  Having an allergic reaction to the track.  We believe it was made of latex or something similar and Nic had a pretty nasty reaction.  Because of that we didn’t stay real real long but long enough to say hi to a few friends and meet some others.

Then we took our adventure on the road and went to the Volo Auto Museum.  For those that don’t know I am a car enthusiast!  I love all American muscle but GM is near and dear to my heart!  No corvairs there yesterday (such a loss on their part) but they did have some really cool movie cars, including the General Lee!  We also got to see a car from jurassic park, the actual plane from the avengers some old campers and some cool arcade games.  Overall it was a fun day just being a family and celebrating that while life can be unpredictableIMG_0473.JPG being a family still makes everything OK!

 

Today is why…

I have struggled with our decision to pull Nic from school.  Does she get enough interaction does she do enough homework.. heck did we give up too soon?? Then yesterday Nic showed me her back where she’s been having a weird rash.  Her entire back was a rash.  Probably worse than I’ve seen it in a few years.  AND she was running a low grade fever.  Classic signs of a reaction.

Gave her benadryl watched everything real closely and she is slowly coming out of it.  However, the benadryl causes a drop in her blood pressure.  Her norms are 110/70 yesterday and today she’s at 80/50.  So low, but not OMG we are going to die low.

However, going to school would of been impossible.  Right now sitting up isn’t real possible.  Today, today is why I pulled her.  Because she can do her homework when she’s ready. And if that’s tomorrow then cool AND she doesn’t miss critical teaching where she now has to make up hours of lost classroom time.

Deciding to homeschool or online school isn’t easy, and it isn’t the right choice for everyone, but for us it has been the absolute right decision!  Nicole isn’t magically going to get better.  And fall is ALWAYS bad for us, however this fall it won’t be so tragic because we can move stuff around and make sure she’s successful on HER time.

The only downside is I think I have to go work the horse.  Pray for me, lunging him makes me SUPER dizzy!  But I know enough to get him moving and I can take him for a walk and maybe I’ll even take some pix of just him.

No matter what, this is the right decision for us and today proved it!

When your best friend has 4 legs

We’ve all had best friends that one person we could talk about anything to.  The one we’d call in the middle of the night to share a great story with.  I always worry about Nicole having that 1 person who is her everything that she can tell anything to.

She has a few friends who are that close.  Her one friend is a boy – they are working through that weird stage of being friends but being part of the opposite sex.  She has another friend who she claims is her best friend but they are in WAY different places in their lives and I worry that this girl isn’t the best person right now.

Then she has Duke.  Duke isn’t a person (for those of you who aren’t keeping up- Duke is a horse).  Duke is her everything, the one person (horse) she tells everything to. And he understands her, he ‘gets’ her.  He looks for her when he hears her voice and will seek her out when he is unsure.

See a best friend is someone who you can seek out no matter what is happening and they will be there for you.  So right now Duke is her best friend.  And while this might seem sad, it’s not.  Its happy because most of us will never know the love like this.  One that is based on nothing but pure love and trust.

I hope you find a best friend who will love you this way

Build Each Other Up

A friend posted on facebook today a really interesting statement.  You see her kids might have a bruise, or a red mark or wet clothes or mismatched shoes not because she’s a bad mom or ANYTHING but mainly because .. guess what SHE HAS KIDS! That’s what it means!!

When Nic was little she would scream, not just a little but SCREAM. It didn’t matter if she was happy or sad or if it was sunny or raining, she screamed. She did this because she was SICK!  We didn’t know, we tried everything, heck she was the youngest of 5 we had been on this ride before.

My point is this, we don’t know and it isn’t our job to find out. It is our job to raise each other up! So instead of saying, “when my child did that I did (fill in the blank)” try, you are doing OK.  Can I help get you anything? Can I push your cart, can I put your cart away, or simply, I’ve been there! It does eventually get better!

Our first instinct is to offer advice, I think we are hardwired this way.  And sometimes a mom will ask for help! But until she does, just offer support, even if it’s just a smile that says “I’ve been here and you can do this!”

Raise them up

Yesterday we took Nicole to a funeral. It was the first one she’d been to after the PNHS teacher’s (which was more of an event than a funeral).  We took her along for many reasons, the largest being it was going to storm and I didn’t want her at home alone.

The funeral was for a long time friend who passed away, and we knew there would be a number of people there that we hadn’t seen in a very long time and it was true.  Also most (if not all) of those people knew Nic before she even arrived on the planet and probably held her, talked to her and played with her while I was on staff at Community.

After that we headed to our church for a Community 4:12 event.  Tony and I wanted to get back connected to Giftmart and felt that this was an easy way to go in and sign up.  What we didn’t expect to happen was the connection we would make with a single ministry.

360 Youth Services is an orgnaization that helps teens and young adults navigate life. But they also help LGBT teens! This is something that for both Nic and myself is near and dear to our hearts.  For me (and probably for Nic) it’s because we have so many friends who fit into this group.  AND for many of them they’ve struggled with who they are over their life.  When we heard that this is the one of the largest homeless populations as well I know both of us were very surprised.

I am not sure how we are going to get involved in this organization but I know we will.  This morning as I was reflecting on this, the following verse came to mind Proverbs

22:6 Train up a child in the way he should go,
[a]And when he is old he will not depart from it.

I know both Tony and myself want our kids to grow up to be accepting, loving, understanding people and after watching all of them, I can say we’ve been pretty successful.

I am looking forward to how Nic and I will fit into this organization and what we can offer.  The person we spoke with said that we should talk about what our family brings and then sit down with them and say here is what we have.  The one thing I can say our family brings is acceptance.  Acceptance for who you are, acceptance that life hasn’t been easy for you, and acceptance that you matter to us and to God.  It breaks my heart to hear that parents are throwing their children on the streets because they are different or don’t fit a mold of what ‘we’ expect them to be.  This simply can’t be what God expects, it just can’t.

So we’ll be praying for what our next steps will be… I can’t say for sure what they will be and if they will be anything but this definitely feels like it has the hand of God in it.

https://www.360youthservices.org/

It’s the Birthday!!

Today so many years ago we welcomed a pink bundle into our lives! Little did we know the journey this little person would take us on!

From health issues, to horses to laughs to tears this child has given us so much joy!  I will never forget the quick nurse visit that turned into the birth of our daughter!

It would be a short 18mths later that our lives would be turned upside down as we tried for years to come up with a diagnosis!  It would take over 100 doctor visits, 2 Mayo visits and more nights googling symptoms before we would have a clear list of things and a road map to attempt to manage this lovely life!

I would NOT trade any of that for the world.  This child has taught me so much about life and love and laughter! Her ability to look at life in a way that says the glass is always full and that it doesn’t matter what gets thrown at you it will get better!

I can’t believe that God blessed us with this amazing person!  I know that God made her just for us, that he formed her to be perfect for our family and for that I am eternally grateful!

So today we celebrate 14 years of laughter and tears! And we look forward to so many more!!

Liberty

Most people think of the word liberty and think it means personal freedom – well in the horse world it means that and so much more!  According to (https://horsefulnesstraining.com) The goal of Liberty Training is to develop a true connection between human and horse based on how horses interact and communicate within the herd.

Nicole has been talking about doing ‘Liberty work’ with her horse for several years.  I didn’t really (and still don’t) understand what it means.  Altho I am learning! What I do know is that liberty is teaching my daughter to read and trust her horse.

But more than that, it is a joy I have never seen in her before!  She is loving working with Duke and doing Liberty.  She is teaching him to trust her and to look to her for leadership!  Yesterday he got spooked, you see horses have a few blind spots and right behind them is one.  He gets scared when he can’t see whats going on or if he catches a quick glimpse of something the can’t see.  Yesterday this happened and he started running.  However he looked to Nicole to see what he should be feeling!  This is huge, this means he’s looking to her as the Alpha and seeing if she feels he should be scared.  She stayed calm and he calmed down and eventually came to her.

This is the core of liberty work!  The idea that the horse is trusting you because you have a bond!  Not one built on fear or attack but one built on mutual trust.  Duke is learning to trust Nic has his mom!

When I picked her up yesterday I asked if she missed riding and she said No way! She said she loved the liberty work!  She could not imagine doing anything else!!  I love seeing this joy in her!!  It’s hard work but she is so excited to be doing it!

Couldn’t of said it better..

Take a moment and read this amazing article..

https://www.allergicliving.com/2018/08/16/how-my-hives-at-taylor-swifts-concert-led-to-thoughts-on-the-bigger-allergy-picture/

OK Back? This is our world EVERY single day.  We attend a ton of events and we’ve had very similar situations  We were once pulled aside in a security line and had to wait for a supervisor – once she arrived she essentially yelled at the person who had stopped us and they allowed us in.

Having food allergies, means you travel with food everywhere you go.  This is a given! We can’t go to events without having food with us.  I can’t tell you how many websites I have scoured to determine how likely we’ll get Nics food in.  What extra hoops are we going to have to jump through to keep her safe.  We’ve had moments where we don’t take food in because we know it won’t be too long and we can leave her food in the car.

I’ve not gone to events because the site said no outside food allowed.  Even though I know that we are covered under the ADA act.  Essentially you are dealing with security people who aren’t fully educated and don’t understand the law.  Saying “don’t tell anyone” is really an attitude we see everywhere!

Take a moment and think about this, if you knew that going into an event meant you couldn’t eat anything there, and that potentially the food in the event could kill you, what would you do?