Stupid Elf Made Me Cry

Stupid Elf Made Me Cry

We always try and do as much as we can to find fun things Jadon can do.  We  “Dance in the Rain” of this life storm called SMA as much as possible.  This year was our first year for a Christmas tradition of “Elf on a Shelf.”

For those who are not familiar, the elf arrives and you must give it a name which in turn gives the elf its magic.  The elf’s job is to observe the kids, fly to the North Pole each night and report their behavior to Santa.  The elf comes back from his northern excursion and typically gets into some sort of mischief during the night.  Each morning he will be in a different place within the house and the kids have to wake up and find him.

After going through several names, Jadon decided he wanted to name our elf Eddie and he got so excited every time we set out each morning to find him.

On Christmas Eve all the elves all return to the North Pole with Santa, so the day before Jadon decided we needed to make something special for Eddie to play with on his last night here.  We settled on a hang glider.

Jadon was VERY excited to see him hanging from the ceiling fan the next morning, he kept checking on him throughout the day.  At bed time we hung Eddie and the glider on Jadon’s bed (we were careful not to touch him.  If you touch the elf they lose their magic.)

Christmas day I excitedly pointed out to Jadon that Eddie had gone but he left a note.  Eddie said that Jadon was such a good boy but Jadon was visibly upset. I could tell he wanted to see Eddie not a note from him.

I began to explain that Eddie was in a much better place.  The North Pole is great for Eddie because he can fly around all day (instead of just at night), play with his friends and just simply hang out with Santa.  I told Jadon he would see him again next year which of course to a 4 year old is like a lifetime.

Somewhere in the midst of my little speech I realized what I was saying to my terminally ill child.  I realized I was using the words I dread to hear.  The words that will likely be used to comfort our family when THAT dreaded day arrives.  I believe that when Jadon is called home by the Almighty he will truly be in a better place, he will be free from SMA, he will get to celebrate each day with God, and one day we will all be reunited in heaven.

I quickly realized that while I believe these words to be true in relation to real life (not a little elf and Santa) they will likely do little to comfort the pain of loss when that horrible day comes.

My mind quickly shifted to all the families who have already lost their angels.  Those families waking up on Christmas morning wishing they had just one more Christmas with their precious child.  With tears in my eyes and Jadon looking at me like I was insane, we said a prayer for those families.  We prayed for their comfort and understanding.  We prayed that they would find laughter in the day while still remembering and missing their angels.

Jadon seemed to get it.  He seriously seemed to understand as I wiped the tears away and proceeded to get him out of bed and ready for his treatments.  I talked to him about how we would have the best Christmas day ever, how we would do so to honor all those angels.  We have no control over tomorrow but we can choose to enjoy each day.

Jadon had the best day.  His oxygen saturation was 100% the entire day, his eyes sparkled, and was “singing” all day.  I think he was singing for the angels.

90% of kids with SMA Type 1 don’t live to celebrate their 2^nd birthday on earth.  Jadon was exactly 54 months old (4 1/2 years) on Christmas day.  Every day he beats the odds those odds worsen.  We don’t care what the statistics say because Jadon is with us now and WE WILL DANCE.

Eddie messing with the Toy Story crew

Looks like they caught him the next night.

Making friends…all is good

Never pick a snowball fight with a snowman.

Hoping everyone had an incredible Christmas.