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Easy, BUT SO HARD!

Quick update.

First of all, we are so incredibly grateful for the AMAZING LOVE of our friends and family.  Rachel’s room is full of cards, and love expressed EVERYWHERE!!  While the days are full of chaos, follow by calm…we are so thankful for each note, card, gift card, coffee, prayer, gift given, smile shared, offer to help and…the list goes one and on.  THANK YOU!!!! We could not do this without a team of people supporting us AND WE FEEL IT!!  Sorry if I am slow to respond.  Please keep trying me, I LOVE knowing God has placed us on your heart.  We will get into a routine and I will be able to reply as I want to.

My curious girl. She LOVED looking through this fun basket with SO MANY TREATS and activities. A blessing to her heart! Thank you friends!

Another sweet friend that KNOWS about this world we live in. Sweet love sent from them. Blessed.

Treatments consist of being flipped head down to allow postural draining of the junk in the lungs.

Grandma is the BEST!!! We are so incredibly thankful for her on so many levels!!

As crazy as our house is at times…it is so very good to see all of my precious kiddos in the same rom. I LOVE THESE KIDDOS SO MUCH!! They have been such a joy to all of us. Crazy, a bit loud…but so amazing. Please keep praying for them. This is really hard on them too.

The hospital is full of lots and LOTS of people that stop in to check in on you, especially when you are new.  The dietician checking on food, the therapist checking sanity lol, the physical therapist giving her goals to keeping moving in the hospital, the social worker checking to see if she needs a note for her teacher (lol), the doctors, nurses giving iv’s 5 times a day, respiratory therapist 4 times a day, and the list goes on and on.  It is a BUSY, and yet pretty lonely place.  Somehow time stands still, while whizzing by you at lighting speed.

Last night was a very short night.  We didn’t get all med’s figured out…and actually were told they didn’t have one of our home meds (a common one, but somehow they weren’t able to get it to us), so my AMAZING mother in law ran home around 10.  After we finished all of the nighttime meds, and feeding tube feeds it was about 11:45.  Rough way to start the week.  Then we had a wake up at 2:15, and were up for the day at just before 6am.  =0 Has anyone ever said that the hospital is a hard place to actually rest?

While I sat in the early morning watching my girl try to get comfortable sleeping, I couldn’t help but think about how very precious this time with her is.  She was worried that she was not going to be able to sleep with the line in because it hurt pretty bad to put pressure on it before bed.  I can’t see the site since it is covered, but I am certain it is bruised watching the hard push that they did getting it in.  But, she keeps trying to find a comfortable spot.  Flipping back and forth, I wished I could make it easier for her. All day she had had people instructing her as to what to do.  She did it all, and with grace and dignity that I am privileged to get to experience.  But, somehow as I watched her sleep the emotions came like a tidal wave.  We are in an “easy” admission in the world of cf.  She is not sick, and so far the meds only make her feel crummy for a couple of hours, this is the easy of cf.  As I sat there I was trying to figure out why my heart grieved so much.  This first day of a new cf reality was widely painful. Watching my girl engage in “her world” a world that I would never fully know…HARD.  One that I can NEVER take from her…HARD!!  One that she must learn to walk in and walk well…HARD! Heartbreak….Over and over yesterday through a brave smile.

She hides well behind that beautiful smile, while watching, calculating and observing EVERYTHING!! When she was scared, she put on a smile and attempted to hide the fear, but I could see it.  When she was uncomfortable, it was only my mother’s eyes that could understand it.  And nearly every single medical staff that came in to talk to us were so surprised that this was her first time in the hospital (since nicu).  There was a bit of pride, followed by a heaviness knowing that this….this is just the journey that she must travel.  As I sat there, I couldn’t help but think that this was just the first of so, so many ahead in her life.  I try like crazy not to really think about the future.  It is just too HARD!!  Today has enough worries.  But, sometimes, just sometimes, my mind goes there in the still and quiet as it did this morning.  And it catches my breath as the tears instantly sting my eyes, and my heart can hardly take it.  Unless there is a significant change in cf~ this is her future.  This is my future.  Walking this perilous road alongside my girl.   I started to feel frustrated at this new direction, but then it hit me like a TON OF BRICKS…how many mama’s started here, just like me.  A first admission.  Some when their kids were itty bitty, some at 3, some at 10, here we are at 13.  How many mama’s have sat here year after year, constantly watching the decline in health of their precious child.  And still more crushing, as hard as it is to sit here, how many thousands of mama’s WISH LIKE CRAZY that they were STILL SITTING here fighting this fight for their child.  Whew…heavy stuff.  I spent some time in prayer.  Actually, more specifically time praising the Lord for TODAY!!  Praising Him that we GET to walk this road!  As the tears rolled, and as the reality that we will be back here again and again over the years fighting for my girl’s life, the BRILLIANT joy that the Lord CARRIES us through it all filled my heart! He can be trusted.  And ultimately He is GOOD.  Now, am I tired tonight…ABSOLUTELY EXHAUSTED!!  Eight hours of sleep in seventy two hours is rough anyway you slice it. But, prayer and the Lord’s hand is all over us.

Waiting for a test to be run.

Doing her first hospital pft’s.  Down 8%, not sure why, but we will praying that they head upward!

She was so excited to get to do art while doing her treatments. If only mom would let her do that sometimes. lol

Yes, we did some school.  She really was hoping for a week off of school.  NOPE.  Modified, but we still have to do some.

DRESS UP TIME!!  The hospital had costumes to hand out to the kids today.  SUPER FUN!!

We ran the stairs today with the physical therapist. Rachel ROCKED THAT! The pt and I were panting after we climbed the 12 flights! Whew my girl loved the competition. Little stinker said she couldn’t feel her legs either, but wasn’t stopping. LOVE HER spirit and drive! I prayed the whole time (partly to be able to breathe at the top), but more seriously, that this may be as long as the Lord deems!!

So thankful for the love of our “Aunt”. She was a HUGE encouragement to both of our hearts today!

We didn’t even see one another till around 4pm today. Nice shirt. Guess we are connected in heart and spirit even when we are not near one another. So incredibly thankful for this amazing guy!

There is a verse on Rachel’s “Owl Be Brave” Hospital Quilt that we made last year before her g-button surgery that I read daily, but I can not EVER read without tears. It says,

Because he bends down to listen,
    I will pray as long as I have breath! Ps. 116:2  

When I look at her lung function falling 8% in the last week, I KNOW that this will be my prayer for my girl for all of her days, and even more so, for all of mine! (Hard to type that reality if you caught it!) =(

BUT…MY God can do all things!!!

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