Why didn't we know all this?

It's been a few days since the removal of the purple pillow! Justin is doing well but complaining constantly of pain.  Some we believe, some is just him wanting his way, it's really hard to differentiate.  Since the appointment we have had time to process all we heard from the doctor and are beginning to realize that this road, this journey is no where near over.
I was telling someone the other day that this experience is like living the NICU life all over again.  Doctors tell you as much as they can all while telling you as little as they can.  In the NICU they don't want to get your hopes up, things can go south fast.  They want to give you hope but just enough to keep you going and no more than that.   I realized this is much of the same.  I told the doctor I felt very unprepared for this, she smiled at me. She said "I tried to tell you." But truthfully, she didn't.  She never said he would lose all the strength he has.  She never said he will cry in pain and the muscle spasms won't quit. She never said that the recovery will actually be closer to a year than to a month. She never said he would go into rehab again even AFTER I asked. She said we would see.  She never said a lot.  Now, don't get me wrong! I LOVE his doctor! She is amazing, wonderful, kind, a straight shooter, but much like NICU life, they only tell you what you NEED to know at the time.

WHY?  Why do they do that? Why don't they prepare you for the road ahead? Truthfully, it's grace. They KNOW what's coming and not to give a doctor a god complex, but much like our Father in heaven they know that if we know it all we will run and hide.
If she were to come to me and say
"This is going to be the longest month of your life. Your child will cry in pain for more hours of the day than not.  You won't be able to do much of anything to help comfort him.  You won't sleep for months.  He will lose all of his muscle strength. He won't actually be able to even stand once this is over due to muscle atrophy.  The recovery isn't the month he is in the purple pillow, the recovery is actually the next 6-9 months.  What parent would say yes?! No one! No parent would sign themselves let alone their child up for what we have and will continue to go through.
God is so much the same right.  If God would have told us our stories before the time came, we would collapse at the pain, misery and suffering we knew was to come. Instead of finding joy in the moments we would only focus on the what is to come. We would miss out on so much of life, so much laughter, joy, happiness, blessings.  We wouldn't see the blessings, we'd think - well, I deserve that blessing - look what's going to happen NEXT YEAR!
God knows all! He knows! He knew this was going to happen, he knew this would be part of our story, he knew the pain and suffering and heart ache.  But instead of dumping it all on us at once we get small doses.  We get what we can bare and no more. His love and grace is abounding.  The blessings are in the not knowing.  The blessings are counted daily because in the midst we seek them, we need them to keep putting one foot in front of the other.

Today we count our blessings!
JT is almost off the medications. In fact this morning he yelled at me "Mommy! Don't ever give that to me again!" (it tastes DISGUSTING!)
He sent a message to his classmates
We went on another long wonderful walk
He is standing with full support for about 5 min 2x a day
He is talking, laughing, learning, doing his school work
He is starting therapy sessions again
He's eating food, real food (this has been one of our hardest battles!)

Count your blessings, find your joy in each day!