Seeing God's provisions

Spring break was rough for us.  Usually we do a staycation. We go out to eat at Rainforest Cafe, the boys love it and we do it about once a year.  We go to the Zoo, Morgans, get ice cream... We do a lot and we make it a fun filled family event.  This year we didn't do anything.  Jake and I were both sad about it, but JT wasn't up for it.  As you have heard me say, the recover is anything but smooth.  We also learned that we are in for 6 more months of recovery THEN another 2-4 weeks of intensive rehab in the hospital. It's emotionally exhausting. 
Something you might not know, my kids struggle with anxiety, truth is, so do I. I am not medicated, for the most part I can talk myself down or pray and God grants me peace, I think that's why I pray for the peace that passes understanding for anyone I can.  For me, that has been one of God's greatest blessings. In a time where I should and could easily freak out, I am blessed with His peace. It's incredible!
Anyway, where I am I going with all of this? We didn't go anywhere during Spring Break, school was then suddenly cancelled for the unforeseeable future.  Because of the way things have gone I have zero concerns that we have been exposed to Covid-19. We have gone no where, seen no one and have been homebound for a week longer than most people.  In fact, if you count the 6 weeks prior to recovery, the only place any of us went was school and church, and church happens to meet at the school, so really, other than home, the boys and I have been to school - that's it! Talk about God's grace and peace.

Someone asked me recently how we were handling all of this, Covid coming off JT's surgery.  It's a little scary, I have medically fragile people in my house and JT is certainly one of them, but in the same regard I stop and recognize that God's timing is PERFECT! Yes, we are in a tough time, but aren't we blessed that JT's recovery presided this virus and kept us home and safe.  Our fears are greatly reduced and we are all kind of, sort of, use to being home. 

When I want to worry, and I do, God calms my spirit and says "but look". 

A verse I memorized in High School has carried me through much of life.  Although James is my favorite book of the bible, these verses in Matthew help me walk through some really challenging moments and days.

Matthew 6

25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life[a]?

28 “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. 29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? 

Sadly, I often do have little faith, yet God still calms my spirits and shows me His truth. His good and perfect truth. 

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!

HE DID IT!

He, he who?!? God of course!

We asked for prayers and they were answered!
Jt was VERY anxious but we slowly saw it go away. I told the doctor he was nervous, she and he had a wonderful conversation.  JT agreed to her terms so to speak and we left with the purple pillow in hand but not on him.

Right now we are all struggling.  Struggling to help him find comfort without the medications.  Doctor says it's time to get off the meds! We talked about it, I asked about another medication he use to be on, she said she didn't want to prescribe it until he was off what he is on.  So, this week we will officially wean off the meds! Pray, pray for his comfort and for our hearts. He is also getting discomfort and pain mixed up. He is going to be uncomfortable. He is going to be sore and tired and he isn't going to like it, but we can't continue to medicate for that.
Jake and I are looking forward to getting him off all the medications for so many reasons.  But, at the same time, it's a little scary. He already is waking at night due to pain, is getting off the meds going to be worse!? Only time will tell.

For now, thank God for granting JT some peace.  He really needed it and it is a gift and a blessing and we need to give all glory to God.
Pray for JT to learn the difference between pain and discomfort.  Pray for our hearts and for discernment.  JT can be VERY manipulative. I don't mean that meanly, he is smart and learns quickly how to use things for his advantage, this is one of those situations.
EX. Yesterday I was off getting the boys from school, JT started screaming for Jake.  Jake runs down the stairs thinking he's in real need or pain... "Daddy (in tears mind you) can you please turn on a full episode of Sid the Science kid." Are you kidding!??! (please laugh, we do. He's such a smart stinker)

So, pray for us to have wisdom to discern the manipulation vs the pain and the true need for help and comfort.

Tomorrow he will have his very first 30 min PT session.  We are all very excited to help him get moving again.  I keep saying, this journey is just starting, I feel like I STILL haven't left the start line. Today the doctor told us to anticipate another 6 months before he gets back to where he was before the surgery.  She is also recommending intensive rehab again.  This is where JT and either Jake or I go back and live in the hospital for weeks.  He will have 4 hours of therapy every single day to help him get back to where he was and prayerfully further.  Last time we did this he started walking on his own - wouldn't that be glorious if we could do that again with confidence instead of with trepidation.

Big day

Yesterday a friend asked how things were going because I hadn't posted in a while.  I said they are what they are. I haven't posted because I am sad, frustrated and truly exhausted.  The road is still a twisting winding road. There are little ups and big downs.  I try to find the hope, the light, the joy in life but this journey has been so incredibly challenging on us all.
Last week E had a major meltdown over all of this.  We knew he would at some point.  E wasn't even 3 years old when things like this began to happen.  He has anxiety and he is only 11.  Yes, only I say knowing that an 11 year old cannot possibly handle all we have going on, heck, I hardly can. He screamed and cried and yelled and got angry and jealous and sad.  Then, once he got it all out, and we let him get it all out, he needed to, he said "Good night JT, I love you!"
He's not a bad kid, he's a kid with a sick brother who gets 90% of our attention.  Then he has to share the other 8% of what we have left with his other 3 brothers.  Yes, I know it doesn't add up to 100%, because there are days I don't even have 100% to give anymore.

BUT on to today! Today please pray for JT's anxiety. We head back to the Dr.'s office to get the purple pillow removed. JT is freaking out over it. He is so incredibly afraid of the potential of pain. He hates taking it off for baths and stretching.  Please pray for wisdom for us all.  Pray we are our best so we can be his best advocates. Pray we ask the right questions and that we ask ALL of them!
I am so thankful he is able to express his fears and concerns to me.  What a blessing that is! Last night we sat on the sofa talking through it all. His fears, how he can trust daddy and I to take care of him, how we can pray and ask God to help us too.


I will try to update later today to let you all know how it goes.  Just know, no update means it most likely didn't go as well as we'd hoped and my time will be spent comforting JT as much as I possibly can.

Thank you for reading our posts, for praying with and for us. Thank you for allowing me to get it all out somewhere because keeping it in is a burden to carry too.