Lightning and the thunder

JO IS THE LIGHTNING AND THE THUNDER.  He is so strong and resilient and makes every day count. He makes progress, he struggles through what seems so simple to us.  He makes a point to engage each and every person who cares for him, at times turning his head even when he is obviously exhausted.  Look at yesterday's schedule...

Wake up and watch the sunrise through his window, as each of his siblings say good morning.  Serge is with him time for hygiene!  Brush your teeth, clean you up, come your hair, small nap.  Flash cards, "where is the duck?", "Moves your eyes to the goat, which color is blue?".  Listen to some music, small nap.  Speech therapist is here, time to work!  Yes/ no exercises,  reading practice, laser pointer practice, mouth exercises, small nap.  Physical therapist is here, time to work!  Range of motion total body.  Time to sit up in bed!  Practice head movement side to side, follow the picture.  Let's beat our last time, sit up, minimal assistance, 17 minutes!  Awesome!  Small nap.  Time to get in the wheelchair for a bit.  Spend about 30 minutes bed to chair, back to bed, completely exhausted, long nap.  Wow, its 4:30 already, still really tired, gaze out the window, watch the sunset, get rest and heal for tomorrow, let's do it again!

​This kid is amazing you can feel his spirit the moment you enter the room.  Lately he smiles so big I swear he's about to laugh out loud, someday soon, someday soon.  Jo inspires us all to do more, there is no challenge we can't take on, no obstacle too difficult, his fighting spirit carries the day.

Transportation update, please welcome DIANE to the family.  Affectionately named after the Angel that brought her to us, our mobility van is at our house, registered, insured, and ready to go!  We are so blessed to have DIANE.  Jo has an appointment on Tuesday and we pray for safe and calm travels, but are so happy that we are finally in control of the ride.  When we leave, how we get there, how fast we go, what bumps we avoid, and we get t do it in awesome looking comfortable van!  It is amazing!  Lately we have been putting Jo is in his chair every day for at least an hour, he has been a champ, and loves watching his sister play Roblox!  Next step is short trips around the block or to the park, anything to build up a tolerance to the ride.  We know that Jo will get used to it in time!  Pray for us!  We CANNOT thank all of you enough for making the dream of our van possible,  The impact on Jo and our lives cannot be measured.  We hope to pay it forward as Jo heals, please God please.

Jo and our family continue to be surrounded by angels praying and supporting Jo.  His nurses have become part of our family.  His therapists have already formed a deep trusted bond with Jo and it shows in his progress!  His teachers visit often and lift his spirits.  His friends haven't forgotten about him and he is overwhelmed with joy when he sees them.  Everyone who touches our lives has helped us make it through these difficult times, and we are so blessed to have so many people in our corner.  God's spirit is seen everyday through the love of our friends, please know we feel it and truly depend on it!

Lightning and thunder, it's the lyrics from a song by imagine dragons that we know Jo would love.  The lyrics also fit Jo so well:

www.youtube.com/watch?v=4AqjqOqNrjw

Just a young gun with a quick fuse
I was uptight, wanna let loose
I was dreaming of bigger things
And wanna leave my own life behind
Not a yes sir, not a follower
Fit the box, fit the mold
Have a seat in the foyer, take a number
I was lightning before the thunder

Today one of his teachers had all the students do their PE work to the song.  She sent us an amazing video and the picture below...we are blessed.

I often listen to lyrics that remind me of Jo, and while it hurts, and often stirs my emotions, it also inspires.  We love and miss our Jo so much but he is right here with us, showing us what real strength is.  Teaching us to have faith and be patient, beating the odds each and every day.  Someday soon he will thank all of you himself!

Jojobinks you are amazing.  Your smiles lift us so high.  Keep fighting Jo, You've got this!  We love you to the moon and back sweet angel,  EVERYONE is here with you.  You teach us everyday about hope and faith, you make it easy to believe in miracles.  Your spirit is true, you are a testament to God's work.  YOU'VE GOT THIS!