Hold My Heart

I guess there are just gonna be days like this.  I have read too many blogs, my prayers seem to be not making it off my lap.  As badly as I want to wave T1D away or at least have a CGM that is more reliable.......But as soon as I get in the car I hear this song and am reminded that there is power bigger than me and  then there is this.....

Luke 6:38 ....Put Into Your Lap

Leah's employer, The Pit and the Peel, has graciously allowed her to put a jar on the counter to collect money for her dream of a diabetic alert dog.  Today as she sat eating in the juice bar/bistro a man walked over to her and asked, "is that your diabetic dog jar on the counter?"  When she said yes he told her that his son was also Type 1 and handed her $100.00.  Wow!  Just Wow!!

We are still talking to several different organizations to determine which will be the best match for a relationship with Leah in working with a Diabetic Alert Dog and we continue to raise funds for this purchase.  

Thanks for your support!

Luke 6:38  ....give, and it will be given to you. Good measure, pressed down, shaken together, running over, will be put into your lap. For with the measure you use it will be measured back to you.”

Dex Day!

Faster than we ever imagined Leah got her dexcom G5 last night.  She was able to set it up, put it on and share with me this morning.  Lord have mercy we did raise one independent Rock Star!  I always knew that strong will would pay off in adulthood.  We are very proud of how well she has hit this curveball and run with it.

After the share feature was set up Leah sent  me a text that said

Rule #1No texting me freaking out about my blood sugars.

Recently I started following    beyondtype1.org in my social media.  In reading links in the web site I stumbled across this one
Emojis in Diabetes Management.  It is spot on with me and Leah!  We had already started using emojis!  So after that text I sent
it to her.  She likes the rules. :o)
                   

A Lovely Day for a Walk

Today I joined the First ever New River Valley JDRF Walk.  It was awesome to be part of the "First" walk in Blacksburg and to meet some new people.  

                                                          I walked with Sharon and the weather turned out nice!  (so glad the walk wasn't yesterday in the snow!)

The group was small but I am sure it will grow in the years to come.

Leah's Blacksburg Doctor was there.  He always makes me feel so much better! He is convinced there is a cure around the corner and that Leah is a Rock Star with how well she is managing!

Sharon and I walked and talked and reflected on raising children.  Driving home I started thinking about a CD that we just about wore out when Ryan and Leah were little called Scripture Rock.  I couldn't believe I found exactly the song on you tube that had popped in my head.  (coincidence?  I think not...)  This is my favorite scripture and brings back such sweet memories of driving my red Toyota Van around with babies in the back.   Parenting is such a challenge some days and parenting adult children is an adjustment.  Sometime ya just gotta Trust..... 

                              

Tas Philas and Tomato Stakes

I'm reminded of a song......

 there'd be days like this mama said...

What to do on the days that are just overwhelming?  

On this day I have stolen ipods from my classroom, end of quarter data due, report cards due and I'm taking calls from CGM manufactures and Insurance companies with 24 6/7 year olds at my feet.  As I jot down the figures of cost now,  cost per month, and then I watch the video for how to attach a little mechanical bug to ones abdomen.... the pressure in my chest is heavy.  It's too much for the oils to handle!  I begin to leak from my eyes.

I feel God holding me up. I know He's there but I'm so sad. So, so sad that all this is happening.
So sad for my baby Rae of Sunshine.... wishing and praying still that it will be lifted from her.  Still knowing that He will take her through it.    I am such a planner.  Obsessively so, some would say.  I didn't plan this. I didn't plan for this, and I don't want it for her.  Such a long term pain in the ***.

So what does one do when this happens?  A good cry,  some hot tea and a text message out to the group labeled "prayer warriors."

Many years ago my bible study group did a Beth Moore study called Living Beyond Yourself.  In this study Beth introduced us to Tas Philas- girlfriends=girlfriend love.   We took that idea along with another story we had heard about Tomato Stakes.  Sometimes there are "days like this" and we need the  "Tas Philas" to be our tomato stakes when we can't pray for ourselves, to hold us up when we have no power to stand on our own. We even had tee shirts made with tomato stakes and Tas Philas written under it.

It reminds me of when Moses had to have his arms held up because he realized as long as he did that the Israelites prevailed in battle but if he dropped his arms the battle would turn.  Exodus 17:12

I think it's a lesson in how much we need others.  How exhausting life is. How there will be days like this but hopefully not too many.  I am very thankful for my Tas Philas/Prayer Warriors.  I'm still sad and I know there will be more days like this and I know what I will do.

One of my Tas Philas' (Lil's mom) words..."I think I cried every day for the first year! It's okay and just how we cope some days.  Find some scripture to feed your soul and get some rest. It always helps!"

Inclusion Day @ McHarg

Inclusion Day @ McHarg

John 3:16 For God so loved (all) the world, that He gave His only Son, that whoever believes in him should not perish but have eternal life.

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My first day back with kids today and it was a special day called "Inclusion Day".  We rotated through stations to experience music therapy, adaptive PE, Occupational Therapy tools in art class.  We also had two student ambassadors with disabilities  to share.   

My sweet (T1D) Lillee who was in my classroom several years ago taught in her mom's class about diabetes for Inclusion Day. She also came to my class to help me explain what happened to Leah and why I had to miss so many days of school.  (kind of another "God-incidence" that this was my first day back with them) They were sweet, interested and seemed very happy to have me back. (my co-teacher especially!)  Lil brought a water jug that she has put sharps in.  It is amazing to see.  Full of that many injections. .... but I have an oil for that !!!!

It was good to be back in my routine but I was still distracted most of the day.

We are in the process of talking to companies about a CGM (continuous glucose monitor).  The bad news is that it will interfere with her Fitbit (bluetooth) but we may have found a work around.
;o) thx Nana.....

I ran across this on Facebook. Amazing how  spot on this is only three week in..... 

Alone

Deuteronomy 4:9  Only take care, and  keep your soul diligently, lest you forget the things that your eyes have seen, and lest they depart from your heart all the days of you life.
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Alone- it keeps coming up but maybe not as you would think.

Yesterday(Saturday), I felt nudged to go to my friends church. But in the middle of the night I thought "I'm not going. I don't want to be alone in the middle of so many people".   This particular church has two services one at 9:00 and one at 11:00.  The 11:00 service is mostly college students.  It is when and where Leah went on and off with her Young Life group before she left for college. Around 10:00 I felt a STRONG nudge to go the the 11:00 service.   I asked God why?  I don't know anyone at that service, it will be all college students, Mark is out of town.  I don't want to go there alone.

I arrived at 10:50 because well you know.... on time is LATE!  but this church mingles and arrives late-ish.   Groups of college students stood in the outer area talking and drinking coffee.  I slowly wandered through them again asking God, why am I here, but feeling at peace that I had come.  I made my way into the sanctuary, which was mostly empty other than some preparations for the service. As I scanned the room wondering where to sit and thinking about "taking someone's pew", One of the elders/pastors of the church recognized me and stopped to chat.  He said "how's life?" I gave him a quick run down of the past three weeks and as he left me he said "you're not alone".   It gave me pause and all I could say was "yeah, alone is the thing...." (that keeps coming up) but I didn't finish that.    I found a seat and watched as all the college students came in.  I wondered if I was suppose to be here because I just wanted to see college students(?)  (grasping? maybe?) Another group of students walked up and entered the row in front of me.  One of them looked familiar, we smiled at each other and I didn't think much more of it as I sat in my row alone.

After announcements this church has a greeting time.  The familiar young man turns around, smiles and says "Hi, my name is T-----."  Well, all the pieces suddenly fall in place and I respond "Hi T----, I'm Leah's mom." T----- is Leah's roommate's brother with T1D.  He asks about her and we chat briefly.  He says to tell her "hi".  We worship together and hug goodbye at the end.  

I don't know really why I was nudged this way this morning.  I don't see a clear path or conclusion yet but I know I was supposed to go there at that time.  What are the chances that "T" would sit directly in front of me and be the only person to turn and greet me.  Coincidence?  I think not.

(By the way, right after the greeting some late arriving college students slipped in and ask if my row was taken, No I said, so my row became full ;o)

Sometimes, it seems we know exactly why God asks us to do something and sometimes......
I'm still puzzling this out and I may never know but what got written in my journal through this service is

In Christ alone,  Through Grace alone,   By the Spirit alone 

 we are called to be alone with Him.  

His still small voice is an echo on the wind, a whisper in the dark or a nudge that won't let up 

Sometimes we allow the many voices in life to drown out the only voice that really matters.... 

the voice of GOD.

Just Be Held

Psalm 34:8   Taste and see that the Lord is good; blessed is the man who takes refuge in him.
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FOOD!  I've always had a love hate relationship with it but how consuming it is now!  I don't need to watch my carbs, do I? but I am obsessed with looking at the carb count of everything now.  It takes hours for me to grocery shop, then I end up leaving frustrated.  Mark and I ate at the Panda Express today- I was so pleased with myself getting the string beans and chicken (13 carbs)- but they trick you!  That didn't include the low mein noodles as a SIDE!! (78 carbs!!!)

 Ryan (my son) believes we all need to wage war on carbs and sugar.  He's probably right.  I watch him hanging from tiny little pieces of anything or balancing on his slack line and I'm in awe of his physical strength. The strength of his thick strong fingers.  The callouses he chooses to allow on his fingers for climbing and  guitar and is proud of ....   verses the callouses on Leah's tiny slim fingers. These become a symbol of her inner strength and endurance.  We continue to learn her body - her reactions to foods - mistakes are miserable with the feelings similar to a hangover.   I ache and wish it were me and not her and she amazes me again with her strength.  One "taste" not planned for can cause such chaos.  Its evil, I hate it.

Yet because of my devotional today my thoughts are brought back to Psalm 34:8.  "Taste and see that I am Good-----I am training you to find Me in each moment and to be a channel of My loving Presence. Sometimes My blessings come to you in mysterious ways: through pain and trouble.  Understanding will fail you, but trust will keep you close to Me."  (Sarah Young)

 God played this song for me today......

Courage is Fear that Said its Prayers

Good Friday Service:
A good friend invited me to her church's Good Friday service.  I went back to work on Thursday and Friday.  I taught a class to adults on Friday, was on my feet all day and I was tired but I really felt God nudging me to go.

What an awesome experience.  It was beyond anything I have experienced BUT I know better.  I have a clue now.  I have been primed for this moment.  It was hard, it was raw, I was reluctant but at the end when we had quiet reflective moments with communion I was clearly told I had to let go and let God.

Hi, my name is Blenna and I am a control freak.....   God made me this way I often say.  He uses it in me to plan, maintain and organize. He called me to work with these little minds.  My mission field of classroom works well this way.   Well,  He likes it........  until He doesn't.  Yes, there are certainly areas in my life that this serves me well and then there are other areas like parenting a young (fiercely independent, competent) adult child.  I am in awe of her.   She has adjusted well. She's responsible and competent and ALIVE.  She's ready to put this in her back pocket and get back to her life of college and friends.  They kept me around for a while to uber drive them to a concert but soon it was clear I was not needed.  So I moved to my aunt and uncle's house just 20 minutes away. After two days there it was obvious that I was the only one not getting back to my own responsibilities.   How can I leave and live three hours away.  Mark came and got me on Tuesday.  I went back to work but I was completely consumed with thinking about her, wondering at every moment what her BS was. Did she make it through the night?  She was patiently texting me but I was noticing a change in the information.  Her text were moving from numbers and specifics about T1D to regular conversations and just general "I'm good" when referring to her numbers for the day.

So back to Good Friday- I had to let go.  I had to trust.  I had to realize that I am not the God of Leah. There is nothing I can do to keep her as safe as He can.  As He gently peeled my praying hands off and took that responsibility from my crying self, I actually felt relief.   I went home, went to bed and slept about ten hours straight.  

Courage is Fear that said its prayers

God bumps and Giddy aunts

Thursday- March 17th 2:00 - We are back in Blacksburg for visit number 2. Still have no endocrinologist.  My anxiety is high.  Leah wants to get back to school as soon as possible and I am uncomfortable with her not having a doctor near school.

As God would have it, we were in the EXAMINING room, waiting on the  Doctor when my aunt called. I almost didn't answer it!   She just so happened to be in an endocrinologist clinic, which incidentally, was rescheduled to this particular day, with a new endocrinologist that had never been an attending at this kind of clinic! Also as God would have it, this doctor is a pediatric/adolescent endocrinologist who has a special interest in transitioning adolescent T1D to adult. She was in the background as my giddy aunt called me and told her to tell us even if the office couldn't figure out how to get Leah on the schedule to show up at 1:00 the very next day anyway! We were jaw-dropping amazed at how He had swung the bat at this most recent curve ball.  We came home, packed up and headed to Richmond with God bumps on our arms.  

Phone a Friend

1 Corinthians 13:7
Love bears all things, believes all things, hopes all things, endures all things

March 23rd. - We are home, all four of us, fixing dinner and it feels so good.  We've got one person on the computer, one on the paper references from the hospital, one on the phone app, one at the grill. We are smart! We can count carbs and figure out a correction dose and add that to the ratio of carb to insulin.  Yes, we can.......... but I phone a friend who's daughter is T1D just to double check. ;o)

God even provides "phone a friend!"  I have been teaching since 1987.  In those years I have had some experience with students with T1D.  Most recently I had a first grader who's T1D was newly diagnoses and as God would have it her mother taught in our school.  As God would also have it a couple of years ago our principal decided to make some moves and moved her RIGHT BESIDE OF MY ROOM. Yes, exactly next door to me.  We became close the year that I had her daughter and she was one of the first people I contacted when we got the diagnosis.  "Godily" she was willing to text/chat with me at all hours of the night as I moved through the emotions and grief of things not yet known.  She knew exactly what to say and God used her mightily during this time as he continues to do.    God loved so much that He had her already in place for us as a resource and a strength.  I am on my face with His power.

Eagle's Wings and Chasing Rabbits

Isaiah 40:30 -31  Even youths shall faint and be weary, and young men shall fall exhausted; 31 but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.
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This is one of my top favorite verses.  Anyone who knows me well know I'm not very good at waiting and I really don't like surprises.  I am a planner.  Leah has teased me about not being very spontaneous.  To which I quickly reply-- I can be spontaneous if you give me time to plan for it. ;o)

March 15,16:  We are disappointed each day that we are not released.  BS numbers are up and down and potassium/magnesium drop and she has to have IV drips again.  We use this time to begin our search for an endocrinologist.   We had decided that it would be best to have this doctor be in Richmond and her doctor in Blacksburg was willing to work with an endocrinologist in Richmond. Through the advice of some other friends and connections we decide that we really want this doctor to be through MCV.  My aunt works at MCV so she begins the search and reaching out to some of the doctors.  This doesn't appear to be going well. The response we are getting is that we will have to get on a waiting list that could be three months or longer.   She sends me some names and I begin reading reviews on line.  Sleep is difficult.  Mark would walk by me on my computer and say "what are you doing" and my answer was always "chasing rabbits".    

March 17:  We have a new shift of doctors and nurses.  People who haven't know us since Saturday. Amazing how attached you can get to your crew in such a short time.  This doctor doesn't know us, doesn't know what we've already learned and been through. He rounds on us and starts at the beginning like this is our first day.  We smile and nod politely.  Then roll our eyes when he leaves.   New nurse "forgets" that the other nurses left notes that Leah is doing her own shots, etc.  Her numbers shoot up again and they start acting like they want to keep her again.  Potassium and mag are good. Anion gap has closed.  We are ready to move on to the new phase.  We have to get a bit assertive in insisting that we appreciate the care and cautious treatment but we will be going straight to a doc who has experience that a hospitalist does not.  They finally agree and let us leave!

I know the plans....

Jeremiah 29:11  For I know the plans that I have for you,' declares the LORD, 'plans for welfare and not for calamity to give you a future and a hope.
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I had no doubt from the moment we learned it was T1D that God did not give her this.  She did nothing wrong. I did nothing wrong.  We live in a fallen world and there are curve balls for all.  Some may have the appearance of avoiding curve balls but I believe if we look inside their closets there are some.  What amazed me was how daily God showed that he had the BAT for each of the smaller curve balls we faced.

March 14:

Diabetic Education:  We began the "rocket science" of learning about insulin dosing and BS ranges. About the affects of emotions and exercise.  How to prime an insulin pen. How to work the monitor. How to use glucagon in an emergency. What to watch for....  Leah's roommate and boyfriend were in the waiting room at this time. Since they really spend more time with her than we do now I asked if they could come in to hear some of this.  Leah's roommate then told us that her dad and brother are T1D.  People I later told that to said "luckily" --- I said "No, Godily".

D-Day 2.0- God Provides

March 12th afternoon-
Leah is admitted to the CCU and our education on life with diabetes begins.  The first challenge is getting Leah a doctor. She has been with the pediatricians but we feel that she needs someone starting now that can follow her into adulthood.  Where do you start when doctor shopping?  God knows!  A good friend comes to visit us in the hospital and her doctor has a son with T1D.  She makes a phone call and gives him my name and number.   This doctor is on vacation with his family at Universal Studios and CALLS ME.  He jokes that he is avoiding rides but seriously?  I am floored!  He says he will be happy to take Leah and help with her health care.  He continues to call me every day to check on her.  He tells us to come straight to his office as soon as she is released from the hospital and he will see her and that he will work through his lunch if needed.  

Sunrises each morning as we go to the hospital.

D-DAY

MARCH 12 -FACEBOOK POST:  Please pray- Life has thrown my family a curve ball.

Wednesday March 9th - Leah and her boyfriend hiked a difficult trail.  Her calves hurt so badly she can hardly walk.  Two days later there is not much improvement.

Thursday March 10th - getting out of breath easily but recovers when she rests, calves still very painful (maybe legs are body aches? uh oh flu going around ..... right?)

Friday March 11th - Leah is vomiting with diarrhea- Tons of stomach bugs around ... right?

Saturday morning March 12th- Leah calls for me to come to her room.  She got up to go to the bathroom and get a drink of water and now she is having difficulty "catching her breath".  She has rapid breathing and chest pain.  Mark and I take her to the emergency room.  While in the ER she vomits again in a trash bag we brought along. We are amazed that she has so much volume. She been drinking water, juice and only eating cracker for two days.  After this vomit she is quickly taken to a room.  They begin hooking her up to machines.  Tachycardia, sore calves and other symptoms....... doctor says they are checking for blood clot but thinks she is in DKA (Ketoacidosis).  They do a finger prick = 355 BS (she has had no food )no carbs for around 48 hours!  Fluids are started and an insulin drip.  Lab show very low potassium and anion gap is wide.  The journey begins.

Leah Rae

When Leah Rae was little her father would sing "You are my Sunshine".  As a child, she was always full of sunshine and life (and energy).  In her adolescent life her friends began to call her Leah Rae of Sun. I guess they saw the same thing we did.  Now it has become her handle on many social media sites.  Last summer when she was on mission in Honduras she became ill.  She received a superlative at the end of the week "most likely to smile even when sick."  She continues to be our Leah Rae of Sun.