I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Monday, June 22, 2015

Lucky vs. Blessed?

I've been really conflicted on the word "lucky" lately.  I've read several articles the last few weeks that have shown up on my Facebook feeds- articles like - "What Every Special Needs Mom Wished You Knew" or "Things Every Special Needs Parents Wished They Could Say"...some I read and just shake my head, because it's common sense and some I read and think, ok I can relate.  I think I'm going to write one, or maybe add to one because I'm sure it's already out there entitled "Words or Phrases Not To Use With Special Needs Parents"  I KNOW when people who don't really know us or our situation say things that it is always coming from a good place, but more often than not I lay awake at night thinking over and over about a "well meant" conversation that I've had and it really is enough to drive me batty when I over analyze.  Merriam Webster defines luck as:  1.  To prosper or succeed especially through chance or good fortune.  or 2: To come upon something desirable by chance.  So when people say Oh, you are SO LUCKY you have a nurse, or you are SO LUCKY you have a handicap van, I see where they are going, but I don't think LUCK.  If I could eat my favorite chocolate chip mint ice cream cone every night and not have to think twice about hitting the treadmill, now that's LUCK!  If I were to walk down the same street every day and find a $50 bill every time, now that's LUCK!  I would not say my circumstances are lucky - by any stretch of the imagination.  
Several circumstances of late require that I be at home for the summer and my bosses have graciously agreed to let me work from home.  We have never been a one income family.  Having children is not cheap and when you add a special needs kid in the mix and your expenses automatically double from your typical child so I've always worked.  A little bit of my work history: I had a great job with the same firm for over 13 years.  I was already working there when Alex was born so they went through all of the ups and downs of her birth and realizations that she was a special kid with me.  The firm was accommodating to my changing needs and I thought there was no way I would ever leave.  But things change and one day it became exceedingly clear to me that my time there was done.  Leaving that safety net was one of the biggest blind leaps of faith I ever had to take but I knew it was the right move for me.  I took the summer off and enjoyed being home with the kids all the while thinking there was no way I would be able to go back to work - there was no company that was going to understand my situation with Alex and be accommodating to my needs.  Never say never :)
There have been some concerns about Alex's back and her scoliosis lately so two weeks ago we went for an x-ray.  The results were a little less than desirable, and honestly, a little shocking to all of us.
We are at a 30 degree curve.  Double where we were last year.  Alex has been having a lot of postural issues, including some issues with her hips.  Her orthopedic said you start talking about surgery, surgery that includes adding pins and rods in her back when you get to a 45 degree curve and I immediately said that wasn't an option.  I instantly had flash backs to her leg surgery last December and her three month recovery that was incredibly hard on all of us and I really don't want to go back there.  Aaron and I both said the same thing - NO way.  When I talked to her Physical Therapist, Shannon, she gave me the reality slap and said it would have to be an option if we get there because eventually the curve will impeded on her lungs and she wont be able to breathe.  So we need to be even more aggressive with her therapy and posturing and make sure when we go back in 6 months for another x-ray we are maintaining and not any worse.
Our summer consists of therapy, therapy and a little more therapy.  I don't think Alex thinks that's very lucky.  I'm sure she'd love to spend her time at the pool, at a sleep away camp or hanging out at the mall or movie theatre with friends.
Instead we start our day in her Universal Cage doing weighted exercises.

And before it gets too hot she goes in her walker up and down the driveway. 
And later in the afternoon it's an hour in her stander.
 Every week we see Shannon and work out at Physical Therapy. 
And we spend time with Speech and OT working on using an eye gaze communication system.
And we go to another OT to work on our vestibular motion issues....
...and to work on our reaching and purposeful play.
Throw in the feeding issues, seizure management and combining all those therapy based lessons into every day life at home and it makes for a very long day that doesn't leave much time for anything else.  That's where I get conflicted when I'm told I'm SO LUCKY I get to stay home for the summer.
I DO think that I am blessed to be able to work from home,  a synonymous word, but having received "divine favor" resonates more with me.
Over 2 years ago, I got the incredible opportunity to go to work with two great guys who were starting up a business.  And these guys KNEW about "our life with Alex" and they were still willing to hire me.  From day one they have inquired about her, cared about her, visited her in the hospital, brought us meals when she's had surgery, rooted her on at Special Olympics events AND let me keep my job!  Between my two bosses and myself  we have a total of 8 kids.  They get it.  They get the whole work/life balance.  On top of that it's a local  healthcare staffing agency, Gateway Healthcare Professionals,  so they have a vested interest in the medical professionals who are living and working in our community that have the potential to care for Alex, their kids, their families.  I get to meet people every day and help employ people who will make a difference in our community, in Alex's community.  I always joke that I'm not a Doctor, I just play one at home.  Since we pretty much see every "ist" in the area I like to think I know a bit about the medical community so I love the fact that I get to place people who I would want to take care of Alex with clients that I would want to take Alex to.  Gateway honestly celebrates the miracles of medicine and that is something I am LUCKY and BLESSED to be a part of!

Thursday, June 18, 2015

Happy Graduation Zach!

It's official, Zach graduated last Friday so I have two Middle Schoolers now. 
Zach's worked really hard this year and we went back and forth with him that he could get a smart phone if he continued to make good grades this year.  He woke up graduation morning super early and was so excited to get the day started.  He saw his present sitting on the table and was anxious to open it totally anticipating a phone. 
Much to his dismay as he got closer to the package he knew it was no phone, but a scrap book I made of his Kindergarten year.  He was trying so hard to be gracious and say what a great present was when all the while I could sense his great disappointment!
After breakfast he got himself all suited up and ready to cross the stage!
And just before he was getting ready to leave Aaron told him how proud of him he was for all of his hard work and his good grades while I told him much I appreciated how gracious he was about the scrapbook - and then he got his wish.
I cried through graduation - I know, I know, shocker for those of you that know me!
All in all he received 6 awards, including a scholar award. 
 Way to go Zach - we couldn't be more proud of you if we tried.

MeMe and Papa too!
After the ceremony we went back to his class to get his report card and say one last good-bye to his classroom.
Then it was on to the black top for final farewells!
I thought it was only fitting to take a picture of Zach and his buddy Alex under the basketball hoop considering that's where Zach spent the vast majority of his recess time!
And this picture just cracks me up  - a graduation selfie!
Zach and his teacher, Ms. Lehmann - thank you for a great year!
Sigh.  That went WAY too fast.  I know it's so cliché to say it seems just like yesterday we were registering for Kindergarten, but it's true, it really seems just like yesterday and now, poof, elementary school is complete.
Zach is very ready to move on, he has said on more than one occasion he loves his school, but he's been there for 6 years now and it's time to go.  I suppose he's right, but it doesn't make it any easier to realize I'm slowly having to let go a little more each year.   I have loved his elementary school and all of his teachers.  He really has gone through the years with some pretty amazing kids that he's lucky to call friends.  It's a little sad knowing I wont be going back to that school anymore. 
We learned a lot in elementary school.  We learned life lessons and we made some incredible memories...
First day of school pictures:
First Day of Kindergarten and last day of 5th grade!

  ...and he's made some pretty incredible friends.
Congratulation's to you and all of your friends Zach.  I know you are all destined for great things and I can't wait to see what the next 3 years and Middle School have in store for you!

Tuesday, June 2, 2015

We Heart Harlie and Friends

On May 9th the 4th Annual 5K and Fun Run to support We Heart Harlie and Friends was held. 

This year Harlie's friends were Alex, Abby and sisters Peyton and Morgan. 

A big part of the event is a 5K and Alex's friends from Inclusive Racing came to run with her and her friends.  Alex's friend Nate that ran with her last year was back to run with her again.

Alex is such a flirt so she was more than happy to see Nate and stare at him!

And we LOVED seeing our friend Laura!

Race time!  Alex is happy and ready to run with her team!

At the starting line!

When I was going through my pictures (which all have a very odd look to them because I didn't realize a setting had changed on my camera!) I was struck by this picture:
 Look at ALL the people that showed up to support We Heart Harlie and Friends.  And the other thought I had was that is was all made possible by one woman who saw a need, had a vision, works tirelessly to find ways to change it up and make it bigger and better each year and truly wants to make a difference.
Lynda Reider, you my friend, are amazing.
Some of the fun things of the day were raffles, t-shirt sales, food trucks, face painting, a DJ, bounce houses, cotton candy and caricature artists.  This year Lynda also hit the pavement and for the first time there were corporate sponsors.

Lynda and I in front of the corporate sponsor banner
Alex had her face painted and she absolutely LOVED it!
Another addition this year was Kids Helping Kids.  Lynda invited kids to come to the event to sell an item or offer a game of some sort.  Her only stipulation was that they donated a portion of their proceeds to the cause.  The kids all did an amazing job selling jewelry, cupcakes, crafts, etc.  Zach came up with the idea of Hoops For Harlie and Friends.

Each of the kids donated most, if not all, of the money they raised.  They are amazing kids.  Zach's been saving up money to buy a pair of hunting boots he wants so I was beyond proud of him when he gave what he made, all $90, to Lynda.
MeMe contributing to the cause and taking a shot!
Aaron and I were thrilled that his Mom and Uncle Louie and Aunt Barbara were able to come in from Niagara Falls for the event again this year.  It's hard to travel with Alex so we are so appreciative that Aaron's parents and Aunts and Uncle sacrifice the time to make the drive down to see us.  We have such amazing family support all around us.
The day before the event we had a surprise visit - and I do mean surprise - from his cousin Nick and his girlfriend Kim.  They got up before dawn and drove all day from Niagara Falls to be here just for the event. You guys can surprise anytime you'd like!
I have met some pretty awesome people in my life thanks to Alex and these women are no exception.
Christy - Harlie's Mom, Lynda and Michelle - Abby's Mom.
I really wish I could describe the feel of the day.  It's really a special day and we are so thankful that Alex gets to be part of this event.  To see the love and support of the community coming together to support these girls is overwhelming.  We are so incredibly blessed to be part of something so great.  The words "thank you" to the community, volunteers, sponsors and most of all, Lynda seem to fall short.
The date for next year has already been set - so mark you calendars for April 30, 2016!