Dear Jadon, You are FOUR Years Old Today

2009

2013

Jadon,

Today you are FOUR YEARS OLD.  At times it is truly hard to comprehend.  Some days we wonder where the 4 years have gone and other times we look into your eyes and you seem infinitely older than just 4 years.  We have truly taken one day at a time and ended up right here…4 years later.

Like it was yesterday, we remember the day you were born.  We remember the pride we felt, the dreams we had for you, and the love that consumed us in your presence.  Although our dreams for you have changed direction, our love and pride for you has grown more than we could have ever imagined.

Jadon, you have changed our lives for the better.   You are our light and inspiration.  You have taught us things we would have never learned any other way.  You have led us places we never would have traveled.  You have led us to people (amazingly good people) that we never would have met.  You have taught us perspective, all those things that seemed “important” before you were born are distant to what truly matters the most.  You have taught us the meaning of unconditional love and hope.  Through you we have learned that life is more than what our earthly eyes see.  You have changed us in ways we never would have changed.  We thank God for you and these changes each day.

Our love will never change.  We want you to know that our love for you is eternal and you should never worry.

Don’t worry Jadon that you can’t speak the words “I love you” as we so long to hear…we can see it in your eyes

Don’t worry Jadon that your smile has gone…we can still see that little twitch in the corner of your mouth and that sparkle in your eye.

Don’t worry Jadon that you can’t speak the words “GET my crazy sister off of me before she tears my eyes out and rips off my ear”…we can see it in your scrunched up eyebrows.

Bug, we have done A LOT of coughs, a ton of suctioning, a whole lot of thumping, quite a bit of stretching and much more worrying than any family should – we have also felt and experienced more love than some families feel.  Your gentle attitude and desire to see tomorrow has calmed us and inspired us.

While, The SMA Standard of Care booklet doesn’t ACTUALLY state that we MUST tell you we love you 97 times per day or that we MUST give you 214 kisses per day…. IT REALLY SHOULD.  And here’s the deal … that is not going to change.

Happy Birthday fella, we love you so incredibly much,

Mommy, Daddy, and Sissy

Family

I had gotten and forgotten this fortune from a cookie back in February.  I remember thinking there was a good chance this would be correct.  When I pulled it from a lost corner of my wallet a month ago I could only smile at the truth.

We started the New Year with the same questions as all SMA families regarding their SMA kiddo.  Have we celebrated our last Christmas together?  What about another birthday?  How about Mother’s Day or Father’s Day, will we “Dance in the Rain” this summer or will this storm sadly come to an end?

In January we were finishing up the paperwork to make Jadon’s Hope a 501(c)(3) non-profit and thought that would be a major focus of our year.  While we tried to make it so we kept coming back to FAMILY.

Jadon’s “episodes” were getting worse and he started having them while he was comfortably on bipap.  We adjusted his diet, his medication, and his routine but nothing seemed to help.  He ended up flat lining 10 times; one of those times being on the side of the highway coming back from his annual checkup in Madison, WI.  It was the highway episode that finally convinced us we were truly at a crossroads with Jadon’s care and we seriously began considering a tracheotomy.

It was April when we found out we were pregnant but our enthusiasm was put on hold while we waited for the SMA test.  Our doctor wouldn’t perform the test until week 11, so we had to wait until early June to find out the results.  We were very excited to add to our family but prayed that another child would not be affected by this devastating disease.

Our summer schedule was a whirlwind to say the least.  On June 8^th we received the results of the SMA test – our baby girl was not affected with SMA!!!  June 20^th we left for Minnesota to attend the Families of SMA conference; June 25^th BUG would be turning 3;  July 9^th was the deadline for the IRS decision on Jadon’s Hope Foundation and Jadon’s trach surgery was scheduled for July 31^st in Madison, WI.   Whew!

Attending the Families of SMA conference was simply amazing to say the least!  It was worth every once of worry to make the trip to Minnesota and see so many families we had previously only met on Facebook.  It was truly an awesome experience to be around so many GREAT people who are fighting the same fight.

 The day following the conference The BUG turned THREE YEARS OLD!!!!  We spent the day at the mall of America and had a great time seeing Jadon’s 3 year old eyes light up with excitement.

We traveled back to Madison on July 29^th for Jadon’s life altering trach surgery.  They told us to plan on 2-4 weeks in the hospital but we were out in 10 days, have I mentioned “The BUG” is a superhero?

The trach brought a whole new routine to learn and many new procedures (which we are still working on).  We felt comfortable enough for Jadon to start Pre-school on September 4^th and we haven’t looked back.  This was a day we did not think we would see and it has been incredible.  We physically attended school every Tuesday and Thursday until right before Halloween when we stopped going due to cold and flu season.  However, we began Skyping with the class every day for about 30 minutes and twice on Tuesday (Music class).  The teacher, his classmates and the district have been nothing short of AMAZING.  We are so blessed to be attending Rolling Ridge Elementary.

On December 14^th we welcomed Gracyn Jaye into the world and into our hearts.  She is truly a blessing.  She is named Gracyn in honor of God’s grace and Jaye in honor of her brother Jadon.

On December 25^th we celebrated Jadon’s FOURTH Christmas and Gracyn’s first.  We are so incredibly thankful for our priority being FAMILY.

Oh, and we finally got word from the IRS in December (only 5 months after their established deadline) that Jadon’s Hope Foundation was approved as a 501(c)(3), non-profit public charity.  As a Foundation we plan to work hard in the fight against SMA in 2013 – building awareness, raising much needed funds and helping other families affected by this horrific disease.

And we’ll continue to keep an eye out for the fortune cookie that simply says:

“The disease will be cured”

Reluctance to Dream

If the blessing of SMA is “Living for Today”, the curse (one of many) may be the “Reluctance to Dream.”

When SMA accosted our lives over 3 years ago we knew we could never return to the world of “It won’t happen to us”.  As we wait patiently for the arrival of our daughter we know it is only by the grace of God that we stand here today.  It is through God’s grace that we are having another child and His grace is allowing Jadon to meet his sister.  This is something we do not take for granted.   In fact, I  made this shirt two years ago in case we were ever blessed with another child and Jadon wasn’t here to place his hands on momma’s belly.

Jadon is not only here but he is thriving and he is very excited to meet his little sister.  Kristin has been recording BGB’s (that’s Baby Girl Burks) heartbeat at her weekly doctor visits.  Jadon is simply mesmerized when she plays the recording for him.  We play it at least 5 times or he gets very grumpy.

We have already had testing done and BGB is SMA free.

But like I said, we were evicted from that blissful world of “It won’t happen to us.”  She doesn’t have SMA but there are a thousand and seventeen other things that could be wrong with her.  How do you define “wrong?”  By definition there is a lot “wrong” with Jadon but he is perfect to us.  He is exactly who he was meant to be.  He is our son.

We really aren’t in a state of “worry”, just simply that crazy “Reluctance to Dream.”  We want to dream of her future and we want to plan all the great things she will do.  Those things would be OUR dreams and OUR plans, not hers and likely not God’s.

So we will try and finish her room before she arrives and we will pray for her every night.  We pray with Jadon that she will be healthy, happy, smart, beautiful, and funny.  She better be funny, healthy first, but then funny.

We will welcome her into our lives in less than 7 days (WOW!!) and she will be loved unconditionally.  She will have the best big brother to learn from and two parents who fully understand what a blessing she is.