Never a dull moment

What a wild and wonderful week.  I don't think we have ever had the first week of school start off like this before, but the last few days have truly been a reflection of what's it like inside (and outside) these four walls.  

We were rockin' the first few days of school.  Everyone was happy with their teachers and seeing new friends, both mama and kids were happy with no homework.  We even had a doctor's appointment scheduled which is certainly not out of the ordinary for our family...no big deal just an appointment for both Jacob and Sophie Kate with the ear, nose and throat doctor (ENT).

I only thought that appointment was going to be routine, it turned out to be anything but.  I really don't know how to make this a short story but I'm going to try real hard.  SK started going downhill at the ENT office and by "going downhill" I mean her typical all of a sudden I don't feel good face, followed by a fever, sick watery eyes and lots of secretions that she had a real hard time handling.  Readers, I'm fixin' to go medical on you...SK had an O2 sat of 84% that was going nowhere fast.  We got her up to 89-90 on 5 liters of oxygen and each time we took her off the oxygen she would plummet to the low 80's again.  This got her an ambulance ride straight to Children's Hospital.  So around 4:00 on Thursday afternoon, I found myself following my daughter who was in an ambulance to the hospital, that my friends is going to be a post for another day because I still can't put words to what that felt like.

In hopes of sparing you from too many details I am just going to say that it didn't look good for us to go home that evening.  After each breathing treatment SK was taken off her oxygen support and each time she would drop her O2 sats back into the 80's.  Just as a reference, we typically walk around at 98-100 and we knew we wouldn't be able to go home unless she could stay above 93...it wasn't looking good.  God had different plans though, as He always has for our girl and after more meds and a third breathing treatment sister stayed at 95 for one hour.  The doctors and nurses couldn't believe we were being discharged and even doctors calling to check on us the next day said they had called Children's Hospital first to get our room number....ha ha little did they know we stayed at a place we like to call home that night, nothing short of a miracle folks.

So, you might be wondering why this turned out to be a wild and wonderful week, huh?  Well, the wonderful came in our discharge from the ER on Thursday night and then our oldest son's first football game on Friday night.  I told Chad that even though SK didn't feel good, she didn't want her mama and daddy missing her brother's first game and thanks to Sophie Kate's nurse we didn't have to...

This night meant so much to me, not just because I love that boy and I love football, but because there was such gratitude in that moment.  My girl was being taken care of, I was watching my boy play football...somehow in the middle of difficulty God's working the thing out.  It wasn't the most ideal set of circumstances but that's how our family operates.

We haven't had to call on our community for help like that in some time, but when we did they all stepped up to the plate for us once again.  We are thankful for great friends who support us and love our boys.  

I am going to give this guy and his first game it's due but it needs a post all its own cause you know his mama took a few pictures, ha ha.  All the football you can handle is coming soon, but for now we are getting our girl back to her smiling self.

Please pray for Jacob as he is having more issues with his ears.  In all the chaos with SK I failed to mention that Jacob is having a tube put in his left ear and other stuff done to that right ear of his this very morning.  There's no rest for the weary around here, thanks for checking in on us.  

  

Starting School

We cannot possibly be on the eve of another school year starting.  Wasn't it just a couple of weeks ago that we celebrated the end of school with our friends at Air Walk? Wasn't it just a little bit ago that we were at Smith Lake with our family or watching fireworks with our neighbors? Wasn't it not too long ago that we were staying up late watching movies and eating popcorn? Yeah well, that probably was just a couple of days ago, ha ha.  Seriously, why does it have to go by so fast?

I'm not ready for other folks to spend more waking hours with my children than I do.  And I don't even want to talk about Cooper...with football, he won't be home until around 6:00pm each day...that's weird for us.  We're all enjoying it, it's just weird him not coming home from school at 3:00 like he always has.  

My baby will be starting Kindergarten.  It's not as I had envisioned over 5 years ago as I dreamed of days like this while she still kicked about inside of me...healthy and growing.  I pull up after all the other children have been let out, get her wheelchair out and carefully place her in it.  I will adjust her hair and and her clothes, hang her bags on the back and wheel her into school.  She won't run or skip in with her friends, she won't hug and kiss me or wave goodbye.

Sophie Kate will be welcomed into her new classroom.  She will be loved and cared for, she will be valued and respected.  She will be talked to, touched and doted on. She will be part of a class and she will be taught just in a different way.  I will hug and kiss her and I will hold her hand and touch her face as I say goodbye to her.  It's not as I had envisioned but it's our reality and I choose gratitude over bitterness, happiness over sadness and love over anger.

I will send off a 7th grader, a 5th grader, a 2nd grader and a Kindergartner.  I pray protection over those sweet hearts and faces that I love so dearly.  I will miss sleeping in, I will miss us staying on our pjs for longer than we should, I will miss breakfast being served so late that we might as well call it lunch, mostly I'll just miss them...their voices, their laughter, our conversations and the smiles.  We will just have to be much more intentional in our time with them...more dinners around the table and less TV, more conversation and less video games, more time with them and less time on our phones.  

Can't wait to get my hands on them at the end of the day and hear about all the first day of school fun!

Proverbs 16:21 "Many are the plans in a man's heart, but it is the Lord's purpose that prevails."

Growing Girl

We are currently trying to wade through multiple doctor appointments with Sophie Kate.  As I shared a couple of weeks ago, it's time for all the "every 6 month" appointments with SK's specialists.  It's almost funny...almost...cause if I don't laugh I might cry.  These appointments always lead to more appointments and this time is no different.  They are literally scheduling our doctor appointments on top of each other.  No, I'm sorry we cannot be at Children's South at 2:45pm and be downtown at the hospital at 3:30pm...I'm good but I'm not that good.

Our first appointment in this series of appointments lasted 5 hours so we are off to a great start (insert eye roll here). However, we did find out that Sophie Kate now weighs 51 pounds.  Wow, this is really something.  I knew it, I'm mean I feel it every single day every time I lift her.  I can tell she has put on weight and I don't say that to be harsh or critical...quite the opposite I'm thrilled.  I'm thrilled that it's harder on me to lift her, because we have been working to get her to gain weight for about a year and half maybe even two years now.  She began looking really thin through the hips and torso and now she looks so healthy.

We just bought this piece of furniture for her room...

We have some rearranging to do, but it's going to look so cute...love seeing those sweet dresses every time I walk in there.

Nothing like hanging out with her little puppy after a long day of doctor visits...

That makes it all better.

Praying

"The great thing to remember is that though our feelings come and go His love for us does not." C.S. Lewis

Our happiness is tied to our circumstances and the way we feel, it can change based on what's going on in our lives. Joy comes from God and Him being present and at work in our lives.  True joy is not based on our circumstances but the hope and love of Christ in us.  It may be difficult to feel at times but like our God, His joy is steadfast and unchanging.

We proclaim Him...let us cling to Him in unspeakable difficulty.  We believe in Him...let us believe Him, His truth and His promises.

1 Thessalonians 4:13 "But we do not want you to be uninformed, brothers, about those who are asleep, that you may not grieve as others do who have no hope."

Revelation 21:4 "He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away."

Praying today and in the days ahead for the family and friends of Brock Bowman as they do the unthinkable and lay him to rest.  Parents should not have to bury their children, 16 and 17 year olds should not know the pain losing their friends...come quickly Lord Jesus. 

Isaiah 42:16 "I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn darkness into light before them and make the rough places smooth.  These are the things I will do; I will not forsake them."    

Still Hurts

When Sophie Kate was born and finally came home from the hospital we fell into what seemed like an endless cycle of appointments both with doctors and therapists.  We couldn't string together 3 days without an appointment of some kind.  We are on a much more manageable schedule now with her doctors, most of which we see every 6 months.  Well, it's that time of year again...so this month and next we will be spending a lot of time downtown at Children's Hospital.

I really am grateful that we have a Children's Hospital so close to us and that we have been connected with many wonderful physicians, but it is not a place of healing for me.  We spent so much time there in her first 3 years of life and still came home with our hearts hurting.  When you care for a child with cerebral palsy there is a sense, in the medical community, of "this is just how she's gonna be." We have had therapists who have given up on her, we have doctors who only want to treat with more and more meds. No one wants to take the reins "medically speaking" and lead the charge here, each doctor just wants to take care of their specialty.  There is no feel of people working together or communicating with each other in any way...so it all falls on me and I'm tired.

So my girl and I will go back to this place that hurts my heart so deeply, we will sit in the waiting rooms with some of the only folks on the planet that know how we feel and I will try with everything in me to keep it all together.  We will discuss seizures and progress, or in their minds lack of progress, more medicines, X-rays, gtubes and the health of her lungs.  I'll long for someone to come in with some fresh ideas or someone to even come in and speak to her first instead of me.  They will look at her chart before they look at her and they will have already made their minds up about her before they even walk through the door.  We'll then go home relieved that we don't have to go back for another 6 months. 

We'll return to our place of healing, our home, our church, our community.  The place where folks know her and know she is so much more than a diagnosis and a medical chart. I heard someone, who has been and still is going through great difficulty, say that God has restored them even though outwardly it may not appear that way.  It has stuck with me and I will remember those words as I sit with my girl in multiple waiting rooms.  We have been restored and redeemed by the Almighty and He determines our worth and in our worthless state He has deemed us worthy...worthy enough to send His Son to die for us.

Ephesians 1:7-8 "In Him we have redemption through His blood, the forgiveness of sins, in accordance with the riches of God's grace that He lavished on us." 

Father God I know You have called us to do more than just survive this...You have called us to thrive and it is by Your hand that we do so.  May we ever and always point to you both in plenty and in difficulty.

Sophie Kate on Vacation

This little girl has taught me so much about living in the moment, being content in my circumstances and finding joy in all things.

She was an absolute doll on our Smith Lake vacation...happy to hang out on the dock, happy on the boat, happy just being with her family. 

You can't spend to much time with her without wanting to put your hands on her.  I always find myself touching her face, her hair, her arms or holding her hands while I talk to her.  I want her to know I'm there.  I want her to feel safe and loved and comforted at all times.  It seems I'm not the only one that can't keep my hands off of her...

My niece always made sure she was holding onto Sophie Kate whenever we took off in the boat.  I wish I could make my girl feel half as special as she makes me feel, as she makes everyone around her feel.  I have had the privilege of waking up next to her some mornings and so has Grey. He does so well with her, it should comes as no surprise that they bunked together while on vacation.  We found him right up next to her one morning, just drawn to her in a way some can't understand.  A bond that runs deeper than brother/sister, deeper than blood...a heart connection that you can almost feel.  They have a bond born of love, acceptance and compassion.

There is so much I want to pack into the years I have them with us.  Let's start with less video games and more conversation, less time with our faces in our phones/ipods and more time around the dinner table, less time in front of the TV and more time on the boat.  Less time distracted and more time plugged in to smiles, laughter, stories, struggles and dreams.  

That's the stuff I'll remember from our Smith Lake vacations.