Wednesday, November 17, 2010

Dear Faith,

Well, Sugar Britches, we made it through the first year.

There were times I wondered whether or not we would.  November 17, 2009 changed our lives forever.  You have been put through the ringer over the past 12 months, but you've handled it like such a trooper.  Your daddy and I couldn't be prouder of you!  When I got the news that you had Type 1 Diabetes I was devastated.  I could never have imagined how God would use your life story.  It is amazing and humbling. I hope you will grow up to realize and embrace how strong He can and wants to be in your weakness, and how much of a purpose and a plan he has for you.  Lean on Him, baby girl, He won't fail you.  I have really learned that this past year.  I pray every day for a cure, but also that, in the meantime, your struggle will point others to Christ.  I pray that your health will be good throughout your life.  I hope you know that I try to take the best care of you that I possibly can.  I do everything in my power to set you up for a healthy life and to reduce your risk of complications as much as possible.  I pray that, when you're old enough to take over your care (like in 25ish years, ok?), you will go easy on me - that's going to be an interesting transition for both of us!  I pray that you will not allow this disease to rob you of a full life.  I pray that you will take ownership of your health, manage your diabetes the best you can, and LIVE. 

I pray that you know, really know, how very much your dad, brothers, sister, and I love you...but most of all, I pray that you will grow to understand how much God loves you. 

I would take this disease on for you in a heartbeat, if I could...but I can't.  So I will always be here for you...every step of the way.  I won't stop praying and I won't take a break until you can.

I love you, Sweet Faify Bidness.

-Mom
This was taken the first time you stood up again after your diagnosis.  It was 3 days later.


You were so sick. :(  For a while, the hospital was our home away from home.









Dear JC, Grace, & Eli,

I know this past year has been hard on the three of you as well.  I know it hasn't been easy to watch your baby sister be so sick, so often.  I know it gets scary sometimes.  You are all so quick to pray for Faith when it gets rough and that has been such a good example for me.  Your childlike faith reminds me to run to our heavenly Father when I'm afraid.  Thank you for that.  I know it can't be easy to watch your baby sister get so much more attention.  I know it is hard to understand all that has gone on.  The way you have handled yourselves this past year makes your daddy and I SO very proud of you.  You have been understanding and compassionate.  Faith could not possibly ask for better siblings to walk with down this road.  I pray every day that each of you will know how very much I love you.  I pray that you will somehow understand WHY your sister needs more attention sometimes and that you'll never feel slighted or jealous.  You are all so very precious to me.  I love you more than I can ever express to you.  I pray that each of you will see that God loves you even more than that!!  (all the way to Jesus and back ;)  I pray that you will continue to grow closer to Jesus and love and serve Him all your lives. 

You make me SO very proud to be your momma.

I love you, Handsome Man, Sister Bidness, and Eebs...very, very much.

-Mom



   

Thursday, November 11, 2010

Good Save, Wuby the Wonder Dog!!


I know I still haven't finished typing our story about how the Lord blessed us with Ruby, please bear with me.  I have to tell you a story of how she saved Faith tonight, though.

Thank God for sending us Ruby.  What a blessing she is to me.  She allows me to treat lows conservatively, because I know that if Faith's bg doesn't come up (like it's not tonight) she will let me know.  



We had spaghetti and garlic bread for dinner.  Before the meal Faith's bg was 248 (too high).  Faith ate really well.  I was very careful to weigh and measure all her food.  I dosed her insulin AFTER her meal, and dosed conservatively.  I didn't give her an entire correction for the high and I treated her for 35 fewer carbs than she actually ate.  We've been having alot of lows overnight lately so I wanted to err on the side of caution and let her run a little bit high.

As Faith is getting down from the table, Ruby alerts.  I know Faith must be crazy high because of the fact that I bolused her AFTER she ate THREE servings of spaghetti and garlic bread, so I tell Ruby that we would check in a little bit.  We went about our evening routine of baths & pjs.  During Faith's bath I noticed that her pump site was looking a little red, so I decided to change it.  I took her to my room and Ruby alerted again.  She was being very persistent and intense so I decided to go ahead and check Faith.   Now, mind you, it had only been about 20ish minutes since I'd given Faith her insulin.  I check Faith's bg and she was 73!!  Wha??  Huh???  How??

The scary part - Faith has 1.66 units of insulin on board (in her bloodstream).  Let me put that into perspective for you.  That much insulin should theoretically bring Faith's bg down roughly 600 points!!!!  You know, just enough to kill her....a couple times...

Faith wasn't displaying any low symptoms at all (not that she always does), so I reasoned that maybe her body was breaking down the carbs a little slowly and she would surely be crazy high in a minute.  (She ate THREE servings of spaghetti, after all)  I decided to finish putting in her pump and watch to see how Ruby reacted.  Not quite 15 minutes later I hear Ruby whining from her place in the living room.  Faith and I were in a completely different part of the house finishing up her pump change.

I recheck Faith's bg and she'd dropped to 55!!  I grab a juicebox and have to force Faith to drink it.  (She was full from her THREE...T.H.R.E.E. servings of (carb loaded) SPAGHETTI and garlic bread.)

15 minutes later Ruby alerts again.  Recheck: 95.

Ok, she's coming up.  Good low, Ruby, we're gonna watch her.

10 minutes later, Ruby gets off place, walks across the living room to get the bringsel, comes to me, gives me the bringsel, goes back to grab the meter..

Ok, Ruby we'll recheck.

Faith's bg had dropped back down to 85, but now she is starting to get shaky.

3 pkgs of Smarties later and Ruby alerts yet again.  Recheck and Faith is only up to 97.

So, now Ruby and I sit here waiting to see what Faith's bg does.

Where did all those carbs go???  I have checked and double checked myself.  I have looked in her seat and under the table.  AAaaaaggghhh!!!

Good save, Ruby!  Good save!


Normally, after nights like tonight, I would sleep in the floor next to Faith's bed or be running to her bedside all night.  Tonight, I will not have to do that.  This is why...

Thank you, Jesus.

Monday, November 8, 2010

What's in a name?

Ok, so this isn't specifically about diabetes, but it's about my diabetic child...


The following is an email I sent out in December of 2008 when I was 8(ish) months pregnant with Faith.  This day, and the response I got from this email were the reasons Chuck and I chose the name Faith.  Prior to this we were settled on a different name (that I can't recall at the moment...).  






******************************************************************************************************
God is so good! I have to share just how I got to see Him work
Wednesday...Some of you have heard most of this story but everytime I tell
it I forget some part of it, plus I'm so excited about it I have to tell it
again...
I have the privilege of being the Awana Commander at my church & we had
Share Shop Wed night where the kids get to spend the Awana bucks they have
earned during the year..Anyway, I had to go to Tyler to pick up some things
to stock the 'store' with & so I called Rachel (my sister) & asked her if
she would ride with me...which I rarely do (most of you know our
relationship is rocky at best) but I thought she'd prob enjoy getting out of
the house & I wanted some company so I called her & she agreed to go with
me.. So, we take off to Tyler with the church credit card & stop at the
dollar tree. I load my buggy up & proceed through the checkout only to find
out (after she's rang up my $60 worth of $1 goodies) that they only take
Mastercards as debit cards with pin numbers..not credit.  I remembered I had
Chucks Chrysler MC with me but didn't know if I'd be able to use it nor what
the pin was so I apologized to the cashier & asked her to void the
transaction & help the long line of customers behind me while I tried to get
Chuck or Preacher on the phone to try to figure out what my options were.
While I'm on the phone trying to reach them this lady walks up to me & says
"I'd like to pay for your purchase". Of course I thanked her profusely but
told her I couldn't let her do that cause I'd rang up $60 worth of stuff!!
She insisted & before I could stop her had walked over to the register &
paid for the stuff!! I apologized & thanked her (& thanked her & thanked
her) & asked her to please give me her name & address so I could get the
church to send her a reimbursement check & she wouldn't hear of it. She
wouldn't even tell me her name! She looked me in the eyes (and this part STILL gives me chills), laid her hand on my pregnant belly, and said, "Honey, trust me, you have enough to take care of."  (OMG!!! In hindsight this leaves me speechless!!)  After that, all she said was "Merry Christmas" & walked away!! I couldn't believe it! So after I picked my chin up off the floor & the bags of stuff I put Eli & Grace in the backseat of the suburban. By the
time Rachel & I got in the front seat Grace was praying (out loud) thanking
God for the blessing he'd just given us & the "angel he'd just sent to us".
Rachel heard this & just started bawling! When Grace was done she said,
"Mommy, we just met a real live angel didn't we?" & before I could even
respond Rachel spoke up & said "yes ma'am we sure did!"  She was completely
taken aback! It was so incredible to see God use this lady I'd never met &
my 5 yr old daughter to show Himself to my sister that day not to mention
bless our Awana program in the process!  Those of you who know Rachel know
what a big deal this is..  But, that's only the beginning!  It had been my
desire to stock the store with some spiritually enriching items for many
reasons, one of which being the fact that many of our kids use this shopping
opportunity to 'purchase' gifts to give to family & friends.  I just always
thought that could be an awesome opportunity to get Jesus' message into the
hands & homes of people that I might never even get to meet.  Because of my
budget & the sheer number of items I needed to purchase I really didn't
think I'd be able to do that this time around BUT because of the generosity
of that lady that God had arranged to have at the $ tree (& GREAT Christmas
sales promotions) I was able to go over to Lifeway & The Scroll & purchase
Bibles & Christian CD's & all kinds of gifts that would help spread the
gospel! I was SO excited I couldn't stand it!  So I take Rachel home & head
to the church to 'price' my loot. We meet for Awana Open Assembly & I share
with the kids how God had blessed us that day & allowed Grace & I to meet a
''real live angel''... Before I let either of the classes go 'shopping' I
challenged the kids to honor God with how they behaved & that I didn't want
any fighting over merchandise or stealing from each other (which we've
experienced in the past) Anyway the kids shopped their hearts out & because
of all God had done that day almost every child walked away with at least
one gift item with scripture and/or gospel message on it, 2 kids that said
they didn't have Bibles were able to buy themselves one (& not just any
Bible but fancy little kids study Bibles), & one girl even bought her
pregnant school teacher a Beginners Bible "to read to her baby"!!  Plus if
that weren't enough, not only did I not get one single report of fighting or
stealing but the kids were buying gifts for each other and sharing their
Awana money with other kids that didn't have as much!! It was so moving!!
I was SO proud of them!!

As you can imagine I was flying pretty high, having an Awesome day when...
Chuck comes walking up to me with tears in his eyes & asks me 2 come with
him that he has something to tell me.. I have to be honest with you, deep
down I was thinkin come on, not something negative I'm having too good a
day! But I followed him out into the hallway & he hands me an envelope.. I
feel like I have to stop here & tell you things have been kinda rough
financially for us recently (along with the rest of the world). Most of you
know Chuck sells cars for a living & if you've..well, been awake.. in the
last few months you've heard the auto industry is not experiencing a banner
year. So we've had 2 specific needs that we've been praying about & quite
frankly were starting to get a little discouraged about..now don't get me
wrong, we believed God would provide, just weren't sure how or when..& when
I'd get weak & feel sorry for myself Chuck would say Sarah come on He's
never failed us before & I'd get irked cause I knew he was right (which
naturally irritates me, hahaha) and God has moved many people to be really
good to us recently BUT back to my point.. we had 2 specific needs that we'd
been praying about & when I opened the envelope I found an unsigned
Christmas card containing the answer to our prayers!!! I couldn't believe
it!  We have no idea who it came from (except God, of course) but man, I
hope they somehow know how much of a blessing they are to us & how grateful
we are!!  Chuck & I just stood there crying, unable to even wrap our minds
around what was taking place.
So, after we wrap up Awana I call my mom to share with her what an amazing
day I've had & learn that the $tree incident had such an impact on my sister
that she'd already called mom & told her all about it! All about what that
lady had done & Grace praying without being prompted at all & that "it just
HAD to be the Lord"! So then I got to call Rachel & tell her I'd been
visited by a 2nd angel that day!!
We get home & I'm tucking JC into bed & praying with him & get up to leave
his room & he stops & asks me if I'll stay in there with him while he prays.
So, of course I do and he prays the most precious prayer thanking Jesus for
the blessings he'd sent us that day & that while we didn't know what that
lady's name was he knew God did so would he please somehow let her know she
was a blessing to us & that we were "very grateful & appreciative" for what
she'd done! Man I hope that lady knows she invested $60 in so much more than
a buggy full of toys!!

Oh man, 24 hours later I'm still shaking my head.  God is so good, but I
feel like that day He was showing off!  I pray that reading this gives you
hope that whatever you're going through God is big enough to handle it if
you'll just trust Him to do so...& never under estimate how God can use you
if you let him. That lady at the $ tree & the people that gave to Chuck & I
may not have thought their contribution was much, but boy oh boy were they
ever wrong!!  Little is much when God is in it...

I hope each one of you has a blessed day & a very Merry Christmas! I already
have..

Love, Sarah Wilson    
*********************************************************************************************************





Ok, so excuse the run-on sentences.  I was excited and typing all of that out on a small phone keypad!


So, after I sent this email out to EVERYONE in my address book, Chuck got a call from someone saying that they thought we needed to name our baby "Faith".  Up to this point, this particular person hadn't been very supportive of our Christian faith and had even made comments that we were pushing it off on our children.  After reading this, they said they could see that our kids truly get it, they were inspired by it, and they thought we should name our new baby Faith...so, we did!







Ok, on a side note - I am speaking at an event for DiabetesFriendly.org this weekend.  Y'all pray that God speaks through me.  This event feels WAY out of my league...they are fancy and well..y'all know, I'm not.  I'm excited to do it, though.  This is the foundation that donated about a third of the money for us to get Ruby.  We are SO thankful for them!  Y'all check out their site! 


Also, I got some VERY exciting news about the next cool thing that God has placed before us.  I can't share details just yet, but keep watching!  It's going to be SO fun!!  It's just a reminder to me, again, that God can do whatever he wants to!


Love y'all.

Tuesday, November 2, 2010

But wait, there's more


So, Sunday while we were at Green Acres, Ruby kept alerting that Faith was high.  She was staying in or around the 300's.  It was another one of those stubborn highs that just won't come down.  Despite multiple corrections (over several hours), her blood sugar was still 335 when we left Tyler.

I had a couple of stops to make, so it took us a little over an hour to get home.  When we got home Faith was asleep, so I walked around to let Ruby out.  I was going to let her out and unload the car before waking Faith to get her out.  As soon as I got around to Ruby's door, she jumped out and immediately jumped for the bringsel.  (She currently doesn't alert in the car.  She gets very anxious.   We are trying to help her work through that.)  I could tell by the intensity of her alert that I needed to check immediately, so I checked Faith's blood sugar while she was still in her carseat.  Her blood sugar had dropped from 335 to 67 in barely over an hour!  I immediately grabbed a juice box and she drank it down quickly.  Her symptoms seemed to be worsening, though, rather than improving, so I yanked her out of her carseat and ran inside.  I opened another juice box and by this time she was shaking SO hard.  It was so scary.  I sat down on the couch and put her in my lap.  She started screaming, "I want my mommy! I want my mommy!" over and over again.  She was SO confused and disoriented and shaking so hard.  I couldn't get her to understand or realize that I was her mommy and she was in my lap!

I put the juice box straw into her mouth and she wouldn't drink it.  I rechecked her bg and she was still dropping.  She was now down to 53.  I could tell by her worsening symptoms that we were rushing headlong into dangerous territory.  I squeezed another juice box into her mouth.  All the while she is still screaming for her mommy.  I sat there holding her, trying to get her to understand that I was right there.  She would scream for a few minutes and then get quiet and get this far off look in her eyes and then go right back to screaming for her mommy.  A few minutes later her intense shaking started to ease up a bit and a few minutes after that I could get her to look at me.  She seemed to be coming around.

As Faith's blood sugar started to come up her shaking began to subside, but still various parts of her body would jump and jerk.  Her head would jerk backwards... her shoulder...her foot... her arm.... her leg - it was so hard to watch.

I sat there holding her, fighting back tears, and thanking God for Ruby.  Had she not alerted as soon as we got home this would have been even worse.   

A few minutes later Chuck and the big kids came home.  We had planned to carve pumpkins, pop popcorn, eat candy, and watch movies that night.  Managing diabetes is a daily battle and this disease never sleeps, but life must go on.

I know this, but all I wanted to do was lay in bed and cry.  Between the man sharing that morning that his Type One loved one had died and fighting a low for MY Type One loved one's life, I was drained.

Oh, how I pray for a cure...

Diabetes Awareness Month

Yesterday Faith, Ruby & I went to Green Acres Baptist Church to hear Daves Highway sing, and to educate people about Tyler Type One Diabetes Foundation.  We got to pass out literature to lots of people including several nurse educators, which should have a ripple effect and reach many type 1 (or future type 1) families.  We got to share Faith and Ruby's story with anyone curious enough to walk up and ask me why I had a dog with me at church. :)  I got to hang with my Type One mommy friends Margie and Susie.  For all of those reasons, it was a pretty great morning.

However, diabetes still managed to weasel its way in there and wreak havoc on my emotions.

Whenever someone would walk up to the table we would ask them if they'd like information on Type 1 Diabetes or if they knew anyone with Type One.  Several knew someone with diabetes, but didn't know what type they had, so we got to educate them on the differences between the types.  We tried to educate as many as possible about the symptoms of Type One in hopes that they'd recognize it if they ever knew someone that developed diabetes.  A couple people had family members who'd lived a long time with Type One.  One lady shared with us that her brother was an adult that had lived most of his life with Type One and that he was doing well.  As the mom of a Type One child it is always encouraging to hear those kinds of stories.  Another lady shared that her brother had lived with Type One and was not doing well at all.  Those are the stories I dread hearing.  Then there was this encounter...

A man and his wife walked up to the table and just stood there.  I excused myself from the conversation I was in and turned to them.  I said, "Hi, would you like information on Type One Diabetes?"  The man just stared at me with this strange look on his face.  He didn't say a word.  So, I said, "Do you know anyone with Type One?" It was then that I noticed tears welling up in his eyes.  He whispered, "yes, but she's dead" and walked away.  I wanted to run after him and ask him so many questions.  I wanted to hug him and say I was sorry.  I wanted to know about their Type One loved one.  BUT most of all, I'm ashamed to say, I wanted to know how and why.  When I hear a story of someone dying from Type One I selfishly want to hear that it was due to negligence on their part.  I want something that I can't point to and say, "Ok, THAT is why this happened.  If we do THAT differently then we'll be ok."  Sadly, a lot of the time there was no negligence and no way to prevent this hideous disease from taking a life.

Really what I want is for someone to tell me that it will never happen to Faith.  I want some guarantee that I won't ever be that person standing on the other side of Type One Diabetes, hating it so much yet wishing it were still a part of my life.

Because, until a cure is found, having my sweet Faith with me means having diabetes be a part of my life....and I'd MUCH rather live with it than without her.

Wednesday, October 20, 2010

These are the roughest days...

Most days I get so caught up in the hourly, sometimes minute by minute, challenge of managing Faith's diabetes that I really don't stop to dwell on the "what-if's".  That really is a blessing.  There are too many "what-if's" and none of them are good.

Today, however, there was no getting away from those scary thoughts that I try to keep pushed to the back of my mind.

First thing this morning, I heard that a Type 1 family lost their precious 13 year old daughter to this ugly disease.  It happened in a way that I believe to be the most terrifying to think about.  No, I don't know this family personally.  Before today I had never heard their names.  But, I know the nightmare they've lived with.  I know the sleepless nights.  I know the fears they must have had, that surely they believed would never happen to them.  I feel this overwhelming sadness for them today.  By all accounts this family did everything they could to manage their daughter's diabetes.  They were proactive, caring, diligent, on top of it. 

This fact makes the news an increasingly bitter pill to swallow.

It would be easier if I could find some fault.  Some fault to pull out of this story to make myself feel better.  You know, "Oh, well they weren't careful enough to (fill in the blank)."  Or, "I am more watchful about this or that."

The truth is this couldn't have been prevented and is a very real possibility for any of us living with trying to manage this monster.

But, it wasn't us this time.  It was Eilish's family.  My heart is breaking for this family.  For Eilish's little sister, Ella.

Oh, how I hope for a cure.

Y'all pray for the families mourning the loss of their little Type 1 angels.  Pray also for all the families that are filled with fear and unable to sleep tonight because of this sobering reminder of how fragile life is.  This reminder of how sneaky and unpredictable this monster called Diabetes can be.

It is more eloquently written about at Candy Hearts Blog and Beta Buddies.  Be sure to check out those touching posts.



So, today has been one of those rough days.  I've been fighting back tears all day.  Not wanting to face the reality of this.  Not wanting JC, Grace, and Eli to see me and start asking questions.  Trying to focus on the positives.  Thanking GOD that I still have my little Faith.  Thankful that her brothers and sister aren't mourning the way little Ella is.

Trying not to allow the devil to take this and fill me with fear.

God is still in control.

He is who He was yesterday... and He will be tomorrow.  No matter what tomorrow brings.

Love y'all.  Hug your babies extra tight tonight.









Thursday, October 14, 2010

Not even close.

Are you the parent you want to be?

I'm not.

Not even close.

Do you have any idea what kind of parent you WANT to be?

I do.  I have all these ideals and dreams of what I want to be...what I feel I should be.  What I believe God is calling me to be.

But, I don't live up to a single one of them...heck, most of the time I'm not even in the ballpark.

I'm not patient, or encouraging, or wise, or loving, or diligent enough.  I know I'll never be perfect.  I don't even want to be.  But, the mark is somewhere North of where I am.

Most days I tell myself that if I'm concerned about being a good mom then I'm probably better than I realize...yeah, that's a lie.  JC made that clear tonight.

Don't you hate it when your kid says or does something that is like them holding up a mirror in front of you?  One that allows you to REALLY see yourself...and catch a glimpse of how they see you?

Today was one of those days that I just feel like I beat my kids up all day.  Of course, I don't mean I laid a single hand on them.  I beat them up in a way that leaves scars you can't see, and that don't heal nearly as quickly as the visible ones.  It was just one of those days...this child did this, that child broke that, if the other child doesn't stop doing xyz I'm going to scream!

You have those days, right?  It's not just me...right??

So, while I was cooking supper I sent all the kids outside to play.  When I had supper in the oven, I went outside so I could keep an eye on the little ones.  I don't remember now what prompted this, but at one point I yelled, "Ok, everyone's in bed early tonight...I can't take this another minute!"  They were already supposed to be going to bed early because of their behavior at bedtime the previous night, but I had just had enough of whatever they were doing at the time, so I felt the need to remind them..I guess.

JC pipes up and says, "We know, but why the little kids too?"

I said, "Because I need a break today!  I've had enough!"

...and this is the moment that the mirror went up...

JC says, "yeah, that sounds about right.  It's always that.  You always need a break...or a minute of quiet.  You have to get out of the house for a minute, or go to the grocery store alone.  Mom, it's like you don't even want to be around us..."

Well, I'd like to say that I immediately felt convicted and asked forgiveness, but that's not what happened.  Not exactly, anyway.  I immediately felt it, but that's now what I immediately reacted out of.  My first thought, (and what came out of my mouth...or some semblance there of...) was more like.... "grr, let's recap, shall we?  I am home with yall 24/7.  I don't have a hobby, don't go out on the weekends, don't have date night with your daddy.  I don't work, your little brother and sister aren't in daycare, you're not even in public school for crying out loud!  If I didn't want to be with you I would be working, someone else would keep your little brother and sister, and you and Grace wouldn't be homeschooling!  I am here because I want to be, but I've had enough of the disobedience and disrespect today and you're going to bed early!"

He mumbled something else about them only not being in daycare because it was probably too expensive, but by this time I was seeing red and licking emotional wounds.  So, I went inside to check on supper.

While I wouldn't usually allow him to talk back like that, I knew he was right...and I couldn't stop thinking about what he said.

"It's like you don't WANT to be around us."

I KNOW I want to be where I am.  It has always been my dream to have a house full of kids...to stay at home...to homeschool.  BUT, what do my actions say to my children?

Does my temper...or my cutting remarks...or my heavy sighs at having to break up the same fights a hundred times...or my irritated glances at being asked the same question a hundred times....or my raising my voice constantly communicate to them that they are my biggest blessings?  That I feel so grateful that they have a daddy that works his butt off so I can stay home with them...so I don't have to put them in daycare?  That I desire above all else to be the one that gets to speak into their lives, nurture them, and witness all their milestones and achievements?

No.

Not even close.

Ugh.  I'm so disappointed in myself.

Some might tell me I just need to relax...that I'm too uptight about this.  (Actually, I could name a few that will.)  But, I need to get this right.  There is little else I will do in my life that is more important than raising my children.  There is a right and a wrong way to do this parenting stuff, and what I'm doing now just isn't cutting it.

God has called us as parents to do more than just get them to 18, graduated, and out of the house.

I know that...and believe that...so why can't I DO that??

 

Ugh, yall pray for me, I'm so disgusted with myself tonight...

P.S. The rest of the DAD story is coming, I promise...just had to get all of this out of my head tonight.

Tuesday, October 12, 2010

Diabetic Alert Dogs...what a blessing!!

Oh, I've wanted to write this blog for several weeks.  It's going to be long, but there's SO much to catch you up on!
We have been experiencing a time of INCREDIBLE blessings!  Gosh, I don't know where to start...so how 'bout the beginning?
One day I was at a friends house and we were all sitting around the table chatting over coffee while our kids (we have 11 collectively...) played outside.  On the table laid a Focus On The Family Clubhouse Jr. magazine.  I absentmindedly picked it up and started flipping through it.  Why?  WHY was I looking through a children's magazine when I was sitting there enjoying the first grown up conversation I'd had in weeks??  (I now know it's because God put it in front of me.)  A picture of a German Shepherd dog caught my eye so I read a bit to see what it was about...only to discover that it was a diabetic alert dog!  I exclaimed, "WHAT!!??" to my friends.  (Who thought I'd lost my mind...or had tourette's or something..lol) I read on to find out that this dog alerted his boy to high or low blood sugar and even woke his mom up during the night to let her know the boy was low.
I HAD to find out more about this!
What a blessing this could be to Faith and I!
As soon as I got home, I got online and started researching and reading everything I could get my hands on.  I didn't even know if it would be possible to train a dog to alert for a child as little as Faith, but I was determined to find out!  I started telling everyone I talked to about it and posting links about alert dogs on my facebook page.  Some people thought I was crazy, others were supportive.
The first day I posted something online about it a friend of mine called me and said, "Sarah, I've been praying for you all morning.  Praying that God would send you some kind of help in taking care of Faith!  Something to help shoulder the load...and I got on Facebook and saw your post about the diabetic alert dog (or DAD).  Sarah, I feel it in my spirit that this is how God is answering that prayer!"  She said, "Research it and pray about it and let me know if I can help you get a DAD for Faith." I prayed (ALOT) about it and sent out emails to every email address I could find online telling them our story and asking them if they could point me in the right direction to find more information.  I got some pretty crazy responses and some very helpful ones.  One (unscrupulous) place responded with "I have a labradoodle for $15,000.  Call me."  That was it!  No questions about Faith's condition, our lifestyle, personality, NOTHING.  I immediately hit DELETE on that one!
Over the next few weeks I kept praying and kept researching and just felt God leading me to a kennel in Mississippi called Wildrose Kennels.  What I didn't know is that the dog that I had found in my first few days of research that I had been so impressed with was a Wildrose dog...
and one of the sites that I had found that had been very helpful was created by a Wildrose trainer...
and a sweet lady that I spoke to online about DADs was a trainer for Wildrose!
When all these pieces came into focus I knew that God was leading me to Wildrose.  There are many places training DADs (some better than others) and out of all those places I just kept coming back (unbeknownst to me) to Wildrose.  Chuck and I decided we'd pray about it one more day and if we still felt God leading us there then we would apply for a dog from Wildrose.
The next morning I sent in the application.  A short while later I got word from the trainer at Wildrose that they would be going through the applications the next day and selecting people that they would train a DAD for.  I immediately sent out a prayer request asking my friends to join me in praying that Faith's story would stand out.  That those reading it would be touched by it and wouldn't be able to get away from it.  A few hours later I got an email from the trainer at Wildrose saying that she was re-reading Faith's story and reliving her own daughter's diagnosis with every word!  I felt like this was just a little bit of confirmation from the Lord that we were on the right track!
Later that night I got another email from her...the one I'd been praying and waiting for! She said that WR was willing to train a dog for Faith, but that it would be a long process because we had to find just the right dog with just the right temperament.  One with the ability to focus on and listen to me as it's handler and focus on Faith as it's girl.  She painted this bleak picture so I would understand and be prepared for the LOOOOONG wait ahead of us.  She warned me that if there wasn't the right dog in the next batch of puppies then we would have to wait even longer.  There are families that have been waiting YEARS for the right DAD.  She wasn't being negative, just realistic.  I believed fully that God had a dog for Faith at this point so I wasn't discouraged a bit...only hopeful.
It was late so I sent emails to my two friends that had offered to head up fundraisers letting them know that we were accepted and that we officially needed to be FUND-raising!  We needed to come up with a deposit asap.  Then we had the rest of the year (at least) to come up with the remaining roughly $10K we thought it would take to purchase the dog and allow us to travel for Mississippi for a week for training when the dog was ready!  I couldn't imagine how, but I just knew God was going to provide the money.  I went to bed that night OVERJOYED!
The next morning by 9am I had heard from one of my friends that we had $100 in our fundraising account!  I was thrilled! Wow!, I thought, just a couple hours into the day and we're already at $100!!  That afternoon I got all the kiddos down for a nap and curled up in bed to catch a nap myself.  I don't get much sleep during the night from checking Faith's bg at least every 2 hours so I try to nap when the kids do as much as possible.  I fell asleep praying.  I was just talking to God about how every aspect of Faith's diabetes had stretched me out of my comfort zone and how I knew I could trust him and I knew his timing was perfect..but I really felt like I needed help NOW...but that I wanted his perfect will so I was trusting that his timing would be perfect.  I fell asleep praying that and was woke up by the phone ringing and it was the trainer from Wildrose. She said she needed to talk to me and asked if I had a minute...of course I did.
Ok, this is getting long, so I'll type more soon....To be continued...

Thursday, July 8, 2010

Or so I thought…What do I know?

So, most of you know I have a sometimes rocky relationship with my Grace.  I feel like I spend 85% of my time coming down on her for one reason or another.  I pray about this more than anything else in my life.  It scares me to think of her teen years if I’m already having this much trouble connecting with her. 

I had a revelation tonight that God is answering this prayer.

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This past weekend I was supposed to (or so I thought) go to the Mandisa concert with a friend, but my friend backed out the day before.  I was bummed and wondering who I would go with when a Mandisa song came on the radio.  Grace pipes up and says, “OH, I just LOVE Mandisa!”  I remember thinking to myself that I should take her with me, but I am ashamed to say I quickly dismissed the notion thinking I ‘deserved’ a night away.  A few hours later Chuck suggested I take Grace with me…gee thanks Babe.. ;) But, I decided she would love it and it would probably be good for us to spend some “girl time” so I asked her if she wanted to go.

We had a blast!!

This is us taking that token picture that is always taken anytime you get a group of girls together…

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Of course, it took several tries before we got one that didn’t have one or both of us blinking, eyes crossed, head cut off… So after this one Grace said, “Ok, enough with the smushing our faces together stuff, it’s really starting to creep me out!” HAHAHAHA! That child.

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We had such a great time and got along so well.  The only snag was at the end when they announced that anyone wanting someone to pray with them should look for the people in the green shirts.  Grace wanted to go pray with someone.  I told her we would pray together as soon as we got to the car.  She insisted she NEEDED to go pray with someone. 

I said, “Grace when you go up there they are going to ask you what you want to pray about.  What are you going to tell them?”

“Faith, I want to pray about Faith.”

“But, baby, then you’re gonna have to tell them the whole story and we’ll be here forever, let’s just go pray about Faith in the car…or we can even sit down here and pray about Faith.  We don’t need someone to pray with us.” 

“But momma! I don’t care, I like for people to know Faith’s story! I’ll tell them the story and you can help me.  Let’s go pray with someone!”

I’m ashamed to say, I didn’t let her go pray with someone.  Who knows what kind of opportunity she might have missed.

What would it have hurt for me to just let her go pray?

 

JC and Grace were supposed to (or so I thought) spend time with their Nannie this week.  At the last minute Grace decided she didn’t want to go so JC went alone.  Last night Grace asked if we could stay up after the little kids went to sleep and have some “girl time” painting our nails.  We did and had a good time.

Tonight her request was this…

Mom, after the little kids go to bed can I play games on your computer while you read me the Bible?

So, after I got the little kids in bed Grace sat down at my desk and played Minesweeper and Purble Place while I read her Matthew 25.  I read the whole chapter, but this is what stood out for her:

34Then shall the King say unto them on his right hand, Come, ye blessed of my Father, inherit the kingdom prepared for you from the foundation of the world:

35For I was an hungered, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in:

36Naked, and ye clothed me: I was sick, and ye visited me: I was in prison, and ye came unto me.

37Then shall the righteous answer him, saying, Lord, when saw we thee an hungered, and fed thee? or thirsty, and gave thee drink?

38When saw we thee a stranger, and took thee in? or naked, and clothed thee?

39Or when saw we thee sick, or in prison, and came unto thee?

40And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.

As soon as I finished the passage she turned around and said, “Mommy, so is that last part kinda like when I was nice to [that bully]? Was I being nice to Jesus then? Is that what it means?  You know what, as a matter of fact, let’s stop RIGHT NOW and pray for her!”

What a sweet precious girl.

Then she turned right back around and went back to playing her games.  I read another passage.  She would pipe up every now and then and ask me what this word or that phrase meant, never looking up from her computer.  The next thing I know she says this:

*sigh* “I just love that sound.”

“What sound Grace?”

“The sound of your voice reading me the Bible”

Then we curled up and read Disney’s Goofy and the Gondola: An Adventure in Italy. :)

 

What a sweet precious time we spent together.  All week things haven’t gone how I thought they would or should, but God had bigger and better things planned. 

What do I know?

Wednesday, June 30, 2010

I can’t make this stuff up, folks…

Well, we’ve had another first…

Ok, so our central air went out.  No worries, we have window units and we’re staying perfectly comfortable.  But, because of this we have a large fan in the doorway of the boys’ room blowing the cool air throughout the rest of the house. It is perfectly safe...little fingers can't get in it or anything, but

PUMP TUBING CAN!

Normally I keep Faith’s roughly 2.5 feet of tubing tucked neatly away in her pump belt, but apparently she was playing so much that it had wiggled itself free and was flappin’ in the breeze when Faith walked into the boys room.  She walked past the back of the fan and it sucked her tubing into the fan, sucked her TO the fan, cut the tubing in half and spit her out!

My big kids came running in the room where I was and they were FREAKING OUT... I couldn’t even understand what they were trying to explain to me that had just happened.  Thankfully, they had unplugged the fan and run to get me.  By the time I got to the boys room Faith was laughing.  She thought it was too fun.  The big kids didn't find it so funny though, they were scared to death. 

I can imagine it was a scary thing to see your baby sister get sucked into the fan...and the noise that must've made...

Everyone is fine though.

Just one more story for the book…

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Friday, June 25, 2010

she’s TOO smart for MY own good…

I’m SO behind on my blogging…have a couple of little funny things to share…

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So, a week or so ago when we had to be at the hospital for the water deprivation test Faith was still in the middle of her extreme thirst.  As the name suggests we had to deprive Faith of all fluids for the test so we were giving her a paci in place of her bottle.  At some point she drops her paci and Chuck picks it up, washes it off and sticks it back in her mouth.  She sucks the water off of it and drops it again.  Again, he picks it up, washes it off, and puts it back in her mouth.  She proceeds to suck the water off, drop it and ask her daddy to give it back to her.  About this time Chuck realizes…she’s doing this to get the water.  He picks the paci up this time and just holds it.  Faith starts fussing and pointing to the sink and telling her dad (in 16 mo old speak) to wash it off!  He tells her no, brushes it off and hands it to her.  She picks up the paci, kneels down, RUBS THE PACI ON THE FLOOR, stands back up, stretches her hand up to give the paci back to her daddy, and then adamantly points to the sink! Smart little toot!!  (WHAT ARE WE GOING TO DO WITH HER AS A TEENAGER???)

 

ULTIMATE REVENGE

The other day I was changing Faith’s infusion set.  This consists of inserting a canulla under her skin (much like an IV only not in the vein). 

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The needle for this is pretty long…

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I get it inserted and lay the needle in my lap, safely away from the other 3 kids who are watching, and finish taping everything down and attaching the tubing.  Faith all of a sudden starts kicking like a mule and….

KICKS THE NEEDLE THROUGH MY JEANS AND ALL THE WAY INTO MY LEG!!  OUCH!! 

I guess I deserve that after all the poking I’ve done on her these past few months… ;)

Always somethin…

*sigh*

So, now Faith’s body has decided to develop an allergic type reaction to her insulin.

Yes, her insulin.

You know, that life saving stuff that she must have in order to SURVIVE!

I want to shake her little body and say, “Don’t you know you NEED this stuff? Don’t you know it’s good for you??  WHY are you rejecting it??”

Then, I think of how this is what we so often do with the gospel…we fight off the very thing that will save our lives.  It’s GOOD for us…why do we fight it?

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When I put Faith to bed Monday night I noticed a little pink in her canulla (the tubing that is inserted under the skin).  I thought that was odd, but she otherwise seemed fine so I just made a mental note of it.  The next day I walked in her room after her afternoon nap and she had pulled her infusion set out of her leg and was scratching at the site.  She never ever touches her infusion set so I knew something was up.  Upon further inspection I found that she had this really angry looking red bump.  It was hard as a rock and painful to the touch.

I texted several of my type one mom friends and none of them had experienced this before.  Why Faith insists on pioneering all these oddities is beyond me.  I really wish she’d go easy on me, but why start now? 

Ugh. I was afraid it had become infected so I started trying to call Dr Casas.  We played phone tag and I didn’t get to talk to him until the next morning.  By then it was looking better and the swelling was starting to go down.  He said that as long as it was an isolated incident and was looking better then we’d just put some neosporin on it and watch her. 

Next morning, walk in Faith’s room and alas…pulled another infusion set out.  Again, lovely red bump.  Not as bad as the one before, but definitely not normal.  Ring ring, Dr Casas.  He asks us to come in so he can see it and we make our way to Tyler. 

We get there and he checks it out and says he thinks she is having a reaction to her Novolog insulin.  (??!!  Really now? Her insulin??!!)  He gives us some Apidra to try. 

I insert another infusion set in the office, fill the pump with Apidra, and head home to see if that corrects the problem. 

So far, so good. 

We’ve made it through one whole set cycle and no redness or swelling.  I’m glad this problem had a fairly easy fix, but it makes me a bit nervous.  What do we do if she reacts to this new insulin??  I’ve looked online and it seems this reaction to Novolog isn’t unheard of.  I guess that’s good news.  (If you’re trying REALLY hard to see the silver lining here…maybe if you squint? ;)

Thankful.

O give thanks unto the LORD, for he is good: for his mercy endureth for ever.  Psalm 107:1

 

I remember hearing this story about a Type 1 child in a third world country. 

Type One children in developing countries

The story goes that a group was taking a vial of insulin to this Type 1 child in a village in a country where insulin isn’t readily available.  The child was close to death and they were going to get there just in time.  When they arrived and were handing the vial to the family it was dropped and broke, spilling what could have saved their child’s life.  This is dramatic and tragic, but illustrates what so many families go through when insulin is just out of their reach.  Some families are forced to choose between food to feed and sustain their whole family or insulin to save that one type 1 child.  These children die without insulin.  I’m so very thankful I don’t have to make that choice.

I’m so thankful to live in a country where I have access to the technology and medicine to manage Faith’s disease well, but  I have a love/hate relationship with insulin.  I love that it’s available, but hate that Faith needs it.

Every time I change Faith’s infusion set I have to replace her insulin cartridge in her pump.  There’s always quite a bit of insulin left in it and it always makes me sad to waste it.  I think of those  that are watching their children die without it and how I’m just discarding it like it’s nothing.  I don’t know why, but one day it just hit me… This is what we often do with the life-saving gospel of Christ.  There are those dying without it and yet I go on living and wasting it instead of sharing it freely as if their very life depends on it.  But it does! So, why hasn’t that been making me as sad as pouring out that insulin?

Saturday, June 19, 2010

Who are all these kids and WHY are they calling me Mom??

 

So, I’m sitting here eating some strawberry shortcake and missing my husband so much I can barely breathe…and thinking about our precious babies.

Tonight I had to run to the store for laundry detergent.  Our washing machine decided to start working again for some reason (YEAH!!) and I hadn’t gotten around to making anymore laundry soap so we ran to Brookshire’s.  As the sackboy was helping me carry my bags to the car he said, “Wow, are these all yours?” (referring to my kids) This question always cracks me up.  I get it surprisingly often.  I only have 4…FOUR…kids! Not fourteen.  My last name is not Duggar. (though, those that know me know I’d go there in a heartbeat) Now, I realize that I don’t have four normal children and sometimes being around my four can feel like there are fourteen children around, but still this question always cracks me up.  I said, “Yep, they’re all mine.” He said, “Wow, really”?  “Yep, wouldn’t change a thing….though I could use a vacation!!” 

HAHAHAhaha…even now that makes me chuckle.  The kids were being really quiet and obedient at the time too…he’d probably have a heart attack and die if he hung out at our house for 10 minutes!!

 

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JC is such a sweet boy.  He is my old soul.  The wisdom that comes out of his mouth astounds me sometimes.  Tonight we were driving home from the store and he said (with tears in his eyes),

“Momma, look at Faith.  She is just so pretty.  When I look at her it just makes me happy.  It makes me think about her story.  It’s a blessing we still have her.”

The best big brother in the whole world. He was playing his XBox and Faith wanted to watch so he put her in his lap and played...for about 20 minutes! She just sat there...and he'd tell her what he was doing as he was playing...SO precious.

So, at this point I myself am tearing up and thinking about what a sweet sweet boy he is…and in the very next breath he says,

“Momma, do you think you and daddy can trade and you can be gone all the time and daddy can be home?”

Little rat.

 

 

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Grace’s favorite song is Casting Crowns East to West.  She walks around singing it all day.  She has one of those tracks that you use when you are gonna sing a special at church. (I’m sure they have a name, but I don’t know what it is… :) She plays it on repeat ALL THE TIME and sings with it.  She and Eli like to have mini concert performances for me, JC, and Faith all the time.  They grab their ‘tars (guitars in Eli speak) and go to town. 

Her favorite line from the song (or the one that gets stuck in her head the most) is ‘here I am Lord and I’m drowning, in your sea of forgetfulness’.  Well, Eli apparantly got it stuck in his head today too and has walked around all day saying “Lord drown me” over and over again.  HAHAHAHA! I think he may be missing the lyrics a bit here. ;) They are SO cute together.  T.R.O.U.B.L.E. waiting to happen!

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Today Faith’s blood sugar has been through the roof…again.  We upped her basal rate…again.  But still, her bedtime bg was 577! I corrected and two hours later she was 367.  I’m so frustrated with it.  And exhausted.  She is totally worth EVERY sleepless minute, but checking her bg every two hours around the clock is EXHAUSTING.  I feel so bad for her too because she is SO fussy and miserable.  I wish I could figure out what is going on with her! 

Today was our day to change her infusion set.  I removed the old one, inserted a new one, and sent her on her way while I cleaned up the mess that causes.  A few minutes later I walk through the kitchen and there lies Faith’s pump…still attached to the infusion set…that I just put in her thigh…  I was promptly informed that Eli had been playing with Faith and ripped it out of her leg!  Ouch!  Faith didn’t seem to mind…she just left it laying and went on about playing.  UNTIL she realized this meant I was going to have to insert a new one.  She started running away from me screaming “no momma, no momma, no momma”. It about killed me.  As soon as we got the new one inserted she was totally fine, didn’t cry a bit, but boy did I hesitate for a minute!  I made sure it was on there good and had a good talk with Eli about being careful with Sis’ pump.  Poor baby felt so bad.  He ran over and kissed her on the head and told her he was “sowwy”. He is so precious with her.  The pictures below were taken in the hospital one of the times she was in there.  They hadn’t seen each other in days and when I put them in the cage (hospital crib) together this is what happened.  Ugh, how cute is that??

 

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Well, it’s time for me to check Faith again and try to get an hour or two of sleep.  Praying for good numbers!  (Sounds like I’m playing the lottery..)  Good night!

Thursday, June 17, 2010

More Faith?

Right after Faith was diagnosed with Type 1 I had a (well meaning, I’m sure) lady come up to me and tell me that God had sent her to talk to me.  She told me that God didn’t want Faith to have Type 1 and I should reject the diagnosis.  She even had the audacity to lay hands on my baby and pray that Faith’s parents would catch a vision for how God would (not could, would) heal her if we had enough faith.  Forgive me, but I think she was used as a mouthpiece that day, but it wasn’t by God.

I know God could heal her.  It would be nothing for him to.  But, when I look at what God has done in Faith’s life already, and the people she has touched, I can’t help but feel (or KNOW) that this is his plan for her.  Her life and story are touching people in more ways than I could have ever imagined.  Do I like this plan? No.  Would I choose this path for my baby girl if it were my choice? No. I can’t (or won’t) believe that this is a punishment or a burden she is straddled with due to my lack of faith.  I’ll be the first person to tell you that I could use/need/desire more faith, but to imply that Faith’s living with diabetes is a direct result of my lack of it is ridiculous.  I can’t tell you how that thought makes me feel. 

We were never promised an easy life, but we were promised that He’d be there with us through it.  I for one can tell you that I have found this to be true.  There are so many ways that God has ministered to us during this and made himself known.  I have never felt him working so intimately in my life as I have through all of this.  It’s goose-bumply at times.

Today has been a rough day (there seems to be a pattern here lately), but it was made easier by the people that God has placed in our lives.  Most as a direct result of her diagnosis.  To know that there are people out there praying for us and seeing the direct result of those prayers INCREASES my faith more than my denying this diagnosis (and thus KILLING my daughter) ever could have. 

I think of Jake, who was diagnosed just about a year and a half ago.  Or Lydia. Or Jeremy. Or Logan. How different my experience (and countless others) would be if they had not developed Type 1.  As a result of their lives, and the faith and compassion of their families, I have had my Tyler Type 1 family to walk this diabetes road with me.  I really don’t know how I’d have gotten through these last 7 months without God placing them in my life.  You can’t tell me that God hasn’t orchestrated all of this.

I for one find God most often in the valley.  Why would that be if he didn’t intend to reveal himself to me there?  I’m no theologian or great student of the Bible, just a believer trying to figure this stuff out.  I don’t know why this is what’s on my heart today, but it is.

Anyway, when my husband reads this post he will probably tell me that I sounded a bit rude.  He’s always telling me that. :)  If the lady that said those things to me almost 7 months ago happens to read this, I hope you will think long and hard about this.  I’m sure you meant it in love, but it cut deep.  I have no intention of calling you out and sharing your name with anyone who asks.  I’m just sharing the introspection that your words to me caused. 

 

This blog thing is funny.  It feels like I’m just writing my thoughts down in a private setting to sort them out for myself.  The reality is that anyone can read them.  That leaves me feeling vulnerable, but something I feel called to do.  I hope that my ranting does some good some where for some one and please know that this post isn’t meant to hurt anyone.

 

Love yall.

My poor kiddos…

Ever feel like your life is one big science experiment and God just shaped your petri dish like a house?

I do.

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Got up late this morning.  Kids had VBS at 9 this morning and I didn’t get up until 8:24. 

Oops. 

BUT, I managed to get them ready and out the door in time to be able to slide in to the church parking lot RIGHT on time.  (Thank God we’d done baths the night before.)

Walk outside and the horse that should be in the pasture behind our house is standing in the yard in front of our house.  UGH!  He had pushed the fence over a bit and jumped it.  The other two were going nuts trying to figure out how to join him in his new found freedom.  I catch him and put him in the backyard temporarily so I can get the kids to VBS.  Get home and he’s pushed the fence (this is all chain link, mind you) over and jumped it to get back into the pasture he originally jumped out of!!  I walk over to him and he’s happily munchin on grass and looking at me like “what?”.  I’m going to shoot him.

Ok, so I’m not really going to shoot him…but for a second there I did fantasize about it… ;)

 

I still couldn’t shake that nagging feeling that something is just not right with Faith.  I had to increase her insulin AGAIN today.  Finally got her blood sugar down to her target at around 430 this afternoon.  I was so worried she was going to crash tonight.  She started to dip down in the 100’s and I was bracing for a low.  But, it didn’t come.  I don’t know what would bother me more at this point, the low I’m expecting after giving her all this extra insulin OR the fact that she’s not low after giving her all this extra insulin!

I emailed Dr C today and asked if he thought we might be overlooking something.  I trust his judgment fully, but nobody is perfect.  Plus, the symptoms he got to witness at the hospital didn’t match what she’s been doing at home for the past week.  I expressed to him that I just had alot of anxiety since leaving the hospital yesterday.  Within 20 minutes of sending that email he’d responded saying he had discussed it with our regular pediatrician and she wants to see us in the morning.  I appreciated his quick response.  It may be nothing.  I’m probably just paranoid, but I just don’t have peace about it yet.

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My poor kiddos.  I feel like there are times when I can’t think or talk about anything but Faith’s blood sugar, or carbohydrates, or insulin.  And managing this disease is stressful and doesn’t always bring out the most patient gracious side of mommy.  Some days I don’t know how I can keep doing this, and of course don’t know how I can NOT keep doing this.  It’s just so overwhelming and all consuming at times.  Thankfully the kids are so good about all of this.  There hasn’t been any jealousy among them from the fact that Faith gets so much attention.  Chuck and I have tried really hard to prevent jealousy.  We’ve talked to them about it and tried to make time for each of them.  They seem to somehow understand that she just needs a little extra attention right now.  I’m so proud of them and so humbled, but I need to do better.  They don’t deserve the snippy, short-tempered, stressed out mommy that they end up with most days.  Gonna have to pray and work harder on that.

So, tonight I’m clearing the table after supper and I hear the horses making a commotion and think to myself “…ugh…bet Zipper is out again”.  About this time I hear the kids yelling, “mommy, someone is here!”  Go to the door and it’s one of my neighbors that I’ve yet to meet. (Well until he introduced himself on my porch at that moment) “Ma’am, do you have a big sorrel horse?”

Grr, he’s out again. 

I go to the barn and get a bucket of feed and a halter.  As I’m walking back I hear cars slowing down and honking. Zipper is standing in the middle of the major highway that we live on! Praise God no one hit him.  That would have been disastrous.  I call him up and put the halter on him.  Thank the neighbors that notified me he was out.  Met the other neighbors that pulled up to make sure he was in fact my horse and not one of the other neighbors’. And put him IN A STALL.  He will be living in the barn until Chuck gets home to fortify the fences.

As I’m doing all this I’m thinking to myself, “What is God trying to teach me? And WHY am I such a slow learner??”  If I didn’t have bad luck these past few months I’d have none at all!  If he’s trying to teach me to rely on him, I’m trying to get that.  If he’s trying to show me who my real friends are, I’m starting to get that too.  If he’s trying to show me that he can use those around me to bless me and meet my needs…and how to accept those blessings… I’m sure starting to get that one as well.  As much hardship and heartache we’ve endured these past few months we’ve also received amazing blessings from those around us.  It’s been incredible and come from the most unexpected places!  We are truly thankful for that.  BUT, I gotta tell ya, sometimes I wish I could get the cliffs notes version of this life and the lessons He’s trying to teach me. 

I often say I wish he’d write it on the wall in pink crayon...  Pink crayon, because in my mind that would make a hand writing on the wall a little less creepy and intimidating. 

So, until he sends me the cliffs notes version, and I get life all figured out, I guess I’ll keep writing down what He’s teaching me…or what I’m failing miserably to learn…and  keep praying that somehow my poor kiddos manage to escape all of this relatively unscathed.

Wednesday, June 16, 2010

Uncertainty…

 

Answers. Even though DI is not the answer we wanted, we were thankful to have answers.  But, that was yesterday.  Today we learned that she doesn’t have DI after all.  That should leave me so relieved…but I’m not.  I can’t shake the feeling that we are missing something.  Faith has had so many odd symptoms this week and so many abnormal lab results.  Something is not right, but what? 

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This week she has been drinking and wetting more than (anywhere near) normal.  She’s had good blood sugars, but large ketones.  HIGH blood sugars and no ketones.  For the past 48 hours I have increased her basal rate by a scary amount and struggled to get her bg below 300.  (It’s only happened about 3 times in 48 hours)  She has been sweating profusely.  Getting almost panicky when her bottle is empty, and even eating more than normal at times.  Her pee has NO smell and almost no color at all and she has dark circles under her eyes.  Some of these things probably wouldn’t even be noticeable to anyone else, but I notice them.

Right now the most unsettling of all the symptoms is the sick feeling in the pit of my stomach.  I just can’t shake it. 

But, why?  Is it the Holy Spirit or my paranoia?

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The other feeling I can’t shake is guilt.  I have a friend that is SO gracefully living the nightmare we have been praying about and dreading this week.  Her daughter was born with DI and diagnosed with Type 1 at 2 yrs old.  I can’t help but feel so guilty and sad that we got to dodge that bullet and she didn’t.  I know it is all part of God’s plan.  I know that.  But, it is still hard to understand and live with.

 

Tonight Grace came in my room and said, “Momma, I’ve been real worried about Faith this week.  I didn’t like her not being in her bed last night.  I kept getting up and looking over in her crib hoping she would be there…”

(Pause.  Obviously has been pondering something and wants to ask, but not sure how.)

“Momma…how long is Faith going to live?”

 

“Well, baby, until God calls her home.  Same as the rest of us.”

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Type 1 is not a death sentence.  You can have this disease and manage it well and go on to live a long happy (different and hard, but happy) life.  BUT, it definitely can get scary and especially at this age..and it causes all kinds of emotions.  I don’t mean to sound like we dwell on death or even the negative aspects of this disease.  We really try to go on living our normal lives in spite of it, but there’s no getting away from it and some days it just gets you down.  I just want to share honestly what it’s like to live with diabetes and honestly, some days, it’s hard to ignore the what-if’s.

 

I read this somewhere and have really been repeating it to myself today…  He is who He was yesterday.

 

and He will be tomorrow…

Monday, June 14, 2010

Even when the sky is falling…

Today has been an emotional day.  Chuck and I visited with our friends at their church.  Both their daughters accepted Christ this week at VBS and today was the first time I’d gotten to see them and talk to them about it.  I loved hearing those precious girls tell me that they had “Jesus in their hearts” now!  A lady at the church stood up to sing a special.  She chose “That’s what Faith can do”. I heard the first note of the song and I lost it.  Listen to the words.  It’s the song we chose for Faith’s video and the song Children’s Miracle Network chose for Faith’s video also.  It was just too much for me this morning after the week we’ve had and they day we have ahead of us tomorrow.

 

 

This morning Faith drank quite a bit, but mid day it seemed to have slowed some.  I started to think…hmm, maybe it was a fluke thing, maybe I imagined it… then I thought..eh, how do you imagine your 16 month old chugging 100 oz of water in a day and having diapers so wet that you have to change YOUR OWN clothes? I did start to think, though that maybe it had passed, but tonight she’s back to soaking everything and has added profuse sweating to the mix.  I had to run to Robert’s house to wash a load of clothes because our washer has decided to stop working…ugh…and when I got back Chuck and I checked Faith.  It’d only been 2 hours since we’d changed her diaper and she was soaked…her clothes, sheets, everything.  I started to just feel really anxious and Grace witnessed us having to change all her bedding and everything and picked up on my worry.  She asked if we could pray together and JC heard us and came in to join us.  So sweet, he just walked in and put his arms around us while we prayed for peace.  I love my kids.  They are precious.

Later I grabbed my Bible and plopped up on my bed to read a bit and try to calm my nerves.  I’m not one to play Bible roulette, and I had every intention of opening to a certain passage and begin reading, but when I looked down at my Bible it was open to Philippians and this was highlighted on the page.  Rejoice in the Lord always.  I will say it again: Rejoice! Let your gentleness be evident to all.  The Lord is nearDo not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts  and your minds in Christ Jesus.  Philippians 4:4-7  

I think that’ll do…

 

I’m gonna go read this to Grace and go to bed.  Love yall.

Friday, June 11, 2010

Diabetes Insipidus

I’ve renamed this post a dozen times.  It started out with a light hearted name because it started out as a light hearted day.  It’s since gone downhill.  I’ll start the post with the fun stuff.  Then I’ll get to the other reality that exists in this house…

 

I’ve got to remember to keep my camera at the ready.  Bear with me, I’m new at this blogging stuff.  This morning the kids and I were supposed to take our annual trip to Blueberry Hills Farms.  We go every year with Robert and her kiddos and then go home and make blueberry pancakes with our bounty.  This morning it was storming. So we didn’t get to go today. 

The kids decided they wanted popcorn, but I only had one of those easy peasy microwave bags.  One is NEVER enough in this house, SO, I decided I would pop some the old fashioned way in a pot.  All went well until I realized that maybe…just maybe…I had gotten a little over ambitious with the amount of popcorn I poured into the pot.  My first clue was when the popcorn started to lift the heavy glass lid off the pot!  I was certain I’d poured too much however, when it started to overflow all over the stove, counter, and into the floor!  I so wish I had a picture!  The kids started laughing and catching it as it was falling from the pan like it was manna from heaven.  Hilarious!

Later I was in the bathroom blow drying my hair when Grace came in and gave me a hug. 

Grace: “Thank you for letting us have a great day even though we didn’t go blueberry picking.”

Me: “You’re welcome, baby.”

Grace: “Have we been good today?”

Me: “Yes ma’am, yall sure have.”

Grace: “What do you say, momma?”

Me: “What do you mean, what do I say?”

Grace: “Say Thank you, momma.”

Me: “Thank you, Grace.”

Grace: “You’re welcome, momma.  We thought we’d surprise you today.”

Lol. That child.

 

Today Faith has had an unquenchable thirst.  Now, looking back, it’s been building for days.  I dismissed it as the heat and such the past couple days, but today there was no mistaking it.  This morning I poured her 8 oz of water.  I handed it to her and poured the other kids some drinks.  By the time I got theirs poured she had downed hers and was asking for more.  Since then she has taken @ 100 oz the best we can figure.  Of course some of that has been spilled, but that’s abnormal any way you slice it.  She has soaked her diaper and every outfit she’s had on today.  Her blood sugar has been right on target and she has no symptoms of being sick, but because of her thirst I decided to check her ketones. Large. Ugh. Ring Ring, Dr Casas.  Thank God for him.  I have to take Faith in tomorrow morning to be tested for Diabetes Insipidus.  This is a totally different type of diabetes that she may have in addition to Type 1.  My heart is very heavy tonight.  Say an extra prayer for my baby girl today if you think about it.

Went out to tuck the chickens in and two of them were missing.  For some reason they’d decided to roost on Lulu’s (the mini schnauzer) outside kennel.  Took them to their own beds and realized…hmm, it’s awful quiet…where is my Lulu…gone. Praying she’s back home in the morning.  Chuck and I both drove up and down the road and called and called for her. No Lulu.  Man, I’m ready for this day to be over.

 

The Lord is good, a refuge in times of trouble.  He cares for those who trust in him. 

Nahum 1:7

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