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.

LOCKDOWN

Tis the season!  Tis the season to batten down the hatches, stock up on supplies, put up the signs, and start the inquisitions.  That’s right, it’s LOCKDOWN 2012.

Winters can be hard for SMA families.  Because a common cold could literally be fatal for someone with SMA, extra precautions are taken.

We wash our hands hundreds of times a day and therefore must stock up on our hand sanitizer; this is our first shipment

We put up our signs:
“Wash your hands and wipe your feet,
Come in this house sick and you’ll get beat!”

We start the inquisitions of anyone coming into our home:

“Are you sick?
Have you been sick?
Are you thinking of getting sick?
Have you been around anyone who is sick?
Heard of anyone being sick?”

We don’t want “sick” in our house.

While we lock out the outside world it also means that we are locked in.  It makes for an incredibly long winter.  Just ask Perry the Platapus, he doesn’t care for our “lockdown reindeer games”.

Cabin fever sets in and we long for any kind of contact to the world outside these walls.

This year we are getting it!

Jadon started pre-school this year and while it was difficult to stop going just before Halloween, Jadon’s teacher has taken his inclusion to a new level.  Miss Cathy, has arranged for Jadon to Skype into the class each morning for a short period of time.

For those that don’t know “Skype”, it basically means that using a computer in our home we can SEE and HEAR the class.  Using a computer in the classroom, Jadon’s class can SEE and HEAR us.  It is AWESOME!

Jadon absolutely loves seeing his classmates.  Miss Cathy has taken it even further to include Jadon in the Halloween parade and also on a recent field trip.  She carries the laptop around with her so Jadon can see everyone and everything.  While Skyping is not the same as being there it is a very good substitute.

We are so “super” thankful for all of Jadon’s classmates as well as Ms. Patti, Ms. Pam, Ms. Melene, Mr. Dave,  and most of all for the amazing, incredible, “High Tech” Ms. Cathy.  Thank You Rolling Ridge Elementary, GO Rockets!!!

The SMA Rollercoaster!!!

“Gitchee Gitchee Goo means I love you!”  The radio in the other room blasts the soundtrack to Phineas and Ferb (One of Bug’s favorite shows) while my beautiful wife bathes our amazing son who we call “The BUG”.  She sings along as she moves Jadon’s arms to the music.  I stand in the doorway with a shark shaped towel draped from my head waiting to catch a dripping wet boy when the fun time, I mean bath time, has ended.  This is definitely one of “those” moments.

Only now, standing in the doorway of the bathroom, does the magnitude of the events from Tuesday morning really hit me.  My eyes swell as I reflect.  Tuesday morning was not fun.  Had it gone only slightly different this bath time would not have been possible.

Jadon had his biggest “episode” to date.

 

Not going into the details of this nightmare I will just say that I was very scared our rollercoaster had derailed.  While the machines were productive and my actions were helpful I believe LOVE is what kept him here, and it’s what has kept him here all this time.  While I am not a trained medical professional I believe that the “pros” would have given up on our little warrior, which is something I refused to do.

After an insanely stressful morning, I changed my sweaty shirt (the shorts were surprisingly ok) and decided to take Jadon outside to enjoy the day.  While every ounce of my being wanted to simply sit comfortably inside, close to the machines, I was drawn to take him out.  He loved it.  The rest of the day was pretty good, Wednesday was even better, and today was nothing short of amazing.

Today Jadon was so happy and talkative that I didn’t want to lay him down for his nap.  I didn’t want that play time to end -ever.

Such is the “Rollercoaster of SMA”.

Recently we have been planning for Jadon to attend pre-school next fall.  We have also been planning some summer trips.  We are excited to be making plans for the future but are constantly reminded of the beast known as SMA residing in our lives.  We are constantly “getting past” the bad and simply enjoying every second of the good.  It is obvious that the destination of this ride is solely in the hands of God.

Our rollercoaster dips pretty low sometimes but the view from the height of this ride is so incredibly worth it.