In Loving Memory of Shamae......

It sometimes takes special circumstances to meet special people.  Life in our household changed in March of 2008.  Just a month prior, February 2008, a different family, in a different state, went through a diagnosis of Type 1 Diabetes, as we would the following month.  In the months that followed, I began to reach out in search of other people, looking for "same".... I needed to know that I was NOT alone.  Somehow, people began to find me before I found them and Shamae was one of them.  

Just like our kiddos blood sugars with diabetes, our life took on a roller coaster.  What used to be a steady routine for all of us D-moms before diagnosis, was nothing but exhaustion, worry and constant interruption to our daily schedule. In these moments...or between...or after.....we could jump on Facebook or blog our hearts out and find immediate connection, empathy and encouragement.  Basal rates, ketones, BGL, MDI's,  I:CHO, glucagon, etc..... we all learned this new vocabulary together.   We had moments of great triumph and moments of sadness and fear with sick kids.  Through all of this, friendships were formed, we got to know more about each other than just diabetes and we loved each other.  

Shamae led the pack with love.  Love is a verb...it's shown in your actions.  I'll never forget the time after we had moved back to Alaska, and I couldn't find a particular snack that I wanted to have for Jada.  You know...it had just the right amount of carbs, not much fat and plenty of protein.  I can't even remember what now what it was.  She jumped right in and offered to throw some in the mail.  That is just how she was.  She was always quick to be the cheerleader, too.  A bad day was made good when you heard from Shamae.  

Shamae...my friend....you are missed so much.  My heart is heavy for your family and the pain that I know they're experiencing right now.  Their circumstances have changed so dramatically and so quickly.  My prayers are with them almost constantly now.  You, however, have moved on.  The cares and burdens of this world have slipped away.  Slumber in peace, my faithful friend.  Your life and legacy lives on in three beautiful little girls who will change their world.  

B is for (low)Blood Sugar....NOT Barbie.....

Today we celebrated Jada's 8th birthday with her friends.  Last week she told me she wanted a Barbie party.  I'm not too much of a planner, so I didn't think it would be a problem.  Barbie is everywhere, right?  Well, Barbie herself is everywhere.  Barbie birthday party decor is NOT.  At least not in Fairbanks, Alaska.  Yes, we are remote, but we have more here than where I was from in Iowa, so I was a little miffed that I couldn't find anything to fit her theme.

So, I was going to have to get a little creative.  It wasn't too hard as Barbie is nothing but pink, pink and more pink.  Throw in some black and white zebra stripes, and you have a pretty cute little party going on.  She didn't want cake, because she won't eat it, but asked for cookies instead.  This is what we ended up with.  Throw a big pink "B" on those cookies, and voila!  Perfect Barbie cookies!

The party was today at 3:00 pm. I was going to finish the cookies when we got home.  Jeff and I had a brunch to go to this morning, so we left around 9:30.  Jada's blood sugar was high...without looking at her meter I want to say it was around 300.  I gave a correction, then left.  Our oldest is 14 and can take care of her just as well, if not better than any adult I could leave her with.  That, coupled with the fact that I could check on her constantly via phone, left me feeling okay with leaving with for a few hours today.  We got a phone call more than halfway through the brunch that she was still high. As a matter of fact, she had jumped up to over 400.  They gave a correction and I knew that we would be home within the hour.  On our way home, Jada called just to lsee where we were and how long it would take us to get home.  At that point, we were less than 5 minutes away.  When we walked in the door, Jada was sitting on the couch, a pasty white face, meter at her side.  She looked at Jeff and said, "I'm low".  45.  And falling. Fast.  I run for the juice.   She refused it.  Chocolate milk.  She refused.  She got combative. And sweaty.  Oh...so sweaty.  Her hair was wet with sweat.  Jeff grabbed the pink frosting intended for the cookies and she shoved it away.  At that point,he grabbed her, held her hands down and I grabbed the frosting and squeezed it into the side of her mouth.  She tried to spit it out.  My baby girl was completely out of her head.  Crying, screaming.  I managed to get more into her mouth and after what seemed like forever, but less than 30 seconds, she was reasonable again.  And she drank the juice, then ate a bowl of cereal.

And I sat back and tried to comprehend what had just happened.  What if we had been delayed by 5 minutes....what if we had been delayed by even 3 minutes?  I might have walked into my house with Jada having a seizure.....or worse.  And then the guilt sets in.  I shouldn't have left her with a high blood sugar.  I should have come home immediately with the news of a 400 blood sugar.  And the what ifs and the I should haves just kept coming....and coming....and coming....   Even after things had calmed down and we had guests here for her party.  They kept coming until I decided I needed to put it to rest until I could really deal with it.

The party was great.  So much fun for her to celebrate with her friends and I had a blast catching up with these moms that I only get to see for a few minutes at a time usually.   It ended up being a great day.  And she didn't get the "B"on her cookies.  Instead, that frsoting was used to combat a  potentially deadly low.

Now that I've had some time to think about today, I know what I would do differently.  I would have made sure to tell her to wash her hands and recheck that 400.  I might have told her to eat something when she corrected that 400, because it had been several hours since breakfast.  

And there's this.  Jeff and I haven't been away even for a night together since diagnosis 5 years ago.  So, getting out for a few hours with each other has been something we've been doing consistently since our oldest was of babysitting age.  We've always stayed with in a 10-15 minute drive and the phones sit next to our plates if we're at a restaurant.  But still, I have to question myself.  Is this an ok thing to do?  We all know what a difference just a moment can make in the treatment of a low blood sugar.  It's not the norm for Jada to have these frantic, crashing blood sugars, and her highs and lows usually follow some sort of pattern that I can anticipate.  But not today.  It's days like today that make me question all that I am doing.  It reminds me that this disease is such a BEAST and that she is forever subjected to what this beast is going to dictate in her little body.  

Even though today had it's formidable challenges, I am so thankful we made it through.  Her blood sugars were all over the board today,  but not scary low like the first one.  Most of all I am thankful for 8 years with this little girl...who told me the other day that I was her "BFF".   I am one lucky mama!

A Test Strip in My Shoe

 A while back, one of my D-mom friends posted that she found a test strip in her shoe.  We all know they show up everywhere.  The shower, the bottom of your purse, the front step.  You name the place, and I've probably seen it there.  I once found a test strip on our favorite hiking trail.  We had been there a few weeks before and I'm just assuming it was ours.  Well, I got to work last week, took off my street shoes, and there under my heel, was a test strip.

Jada loves to peel the test strips apart after they are used and this particular test strip in the bottom of my shoe was one she had dismembered.  My first thought was to peel it off and throw it in the trash can.  But I couldn't do it.  I've been walking around for more than a week with the sticky part of the strip in my favorite pair of Danskos.  I cannot, for the life of me, bring myself to throw it away.

It kind of puzzles me.  I'm not sure why.  I don't know if I feel guilt for leaving her for 4 hours a day, 5 days a week while I go to work.  Maybe it's my way of carrying her with me while I'm gone?  It's oddly comforting to me to see that strip in the bottom of my shoe when I have to run back to my locker to get something.  Perhaps, I'm afraid I'll forget to call and check on her when I have some down time and seeing that strip is a reality check for me.

Perhaps, this disease has just really done a number on me and now I'm really weird.  My coworkers have probably seen it and wondered what the heck it was.  They must think I'm REALLY weird for having such a thing in the bottom of my shoe.  They might not even know what it is, but if they did, they might think I was more than REALLY weird.

So, I have a test strip in my shoe.  I might be crazy, I might be weird, but that little test strip represents so much in my life.  First of all, it represents the fact that she has probably checked her blood sugar more than 18,000 times since diagnosis. 18,000 TIMES! (yes...that's why her fingers are black and blue!) How about the  weight of diabetes that never leaves, even when I am away from her and at work, attempting to keep my mind off of it and then, the guilt that I can't fix her pancreas and BE the perfect pancreas for her.  Or, how about the fact that she has an older brother who worries excessively about her and he has no real peace either.  It breaks my heart.  Jeff and I haven't been away on a trip together since diagnosis.  This disease can take a toll on a marriage.

Until we can say diabetes is no more, I will most likely keep the test strip in my shoe.  I do believe that day will come, although I don't know when.   Until then, we'll keep testing, keep living and trying to make the most out of what life has handed us.

Cabin Fever

Wow.  Almost two years since I've blogged.  I think my last post was May of 2011 and that was my lame attempt at jumping back into my blog.  It is now April 2013.  It's supposed to be break up here in Alaska.  You know, melting snow, mosquitos as large as sparrows beginning to appear, children playing outside, windows being opened on warm afternoons.  Old Man Winter should be well on his way out the door.  Not so.  We are in a winter weather advisory, it was -20 this morning (yes 20 below zero) and I feel like I am losing my mind!  Cabin fever has set in...not just for me, but countless other Alaskans.

cab·in fe·ver  

Noun Irritability, listlessness, and similar symptoms resulting from long confinement or isolation indoors during the winter. This is very much me right now.  Irritable....yes.  Noise levels in the house tonight were almost more than I could handle and no one really wanted to go to bed.  Of course, it doesn't help that we have 14 hours of daylight and our bodies are already beginning to adjust to that. Listlessness? Yes....I don't have a whole lot of energy to tidy the house up or do the laundry or cook meals.  Sorry honey and kiddos.  Maybe when the temps hit 25 above and it quits snowing.  No one is starving yet and they all have clean underwear. I have stuck my proverbial blogging toe back in the blogging water.  It was all Shannon's  idea that I do this again.  Perhaps, next time, I'll jump all the way in.

The Hand That 2011 Has Dealt So Far....

May 13......D-Blog week was the week that I was going to jump back into blogging. Here it is the very last day...and I here I am. Actually, it's quite appropriate for how my life has been since January 12.
January 12 is yet another day engraved in my mind forever, much like Jada's diagnosis date. A game changer for our family. January 12 is the day that Jeff was involved in a horrible car accident in the middle of nowhere Alaska in 20-30 below temperatures.
He was coming home from Delta Junction (95 miles away) in a Subaru station wagon driven by his friend and co-worker, Luke. They came up over a hill and were going down the other side, when a truck in the opposite lane passed another vehicle in a no passing zone. It was icy. Jeff and Luke had nowhere to go, so Luke turned the car sideways and took the full force of this big truck. What they didn't know, was the "other vehicle" was an ambulance, coming back from Fairbanks. God is so good. Jeff and Luke had immediate medical attention....that doesn't even happen in the middle of a city! The entire left side of Luke's body was broken....from a concussion on his head all the way down to a broken ankle. Jeff was able to walk with help from the car to the ambulance...but was experiencing intense internal pain. He had indeed bruised his colon and broke some vertebrae in his back, and had a concussion.
Jeff was admitted to the hospital and the dr. told him that his colon would most likely perforate...and it did. Two days after the accident, I was getting ready to head to the hospital, and Jeff called. His colon had perforated in the middle of the night and they were prepping him for surgery. The surgery lasted somewhere between 3 and 4 hours and they ended up removing a foot of his colon, leaving him with a temporary colostomy. He ended up being in the hospital for 8 days, healing and learning how to care for his colostomy. Luke just got out of the hospital a few weeks ago, still with broken bones that are healing.
The weeks that followed were all a blur to me. Jeff had business trips to Chicago (because....oh...by the way....the same day he was in the accident he also found out that he got a new position with his current company) that he had to take and then the kids and I took a trip to Iowa to see family before spring break hit all around the country. Traveling stand- by is something you just don't want to attempt at certain times of year!
Somehow, April rolled around really fast. At the beginning of the month, Jeff had an MRI done to see how well his colon was healing. After the initial surgery, they told us it would be 3-6 months before they would re-attach his colon, depending on how well he healed. Well, the MRI showed some good stuff, so he was scheduled for surgery on the 27th of April, a few days after Jada's 6th birthday.
Now...we are on the other side of surgery. Two weeks post-op now and he is completely ecstatic to be done with the colostomy bag, but healing from this surgery has been extremely painful. His surgery lasted two hours...an hour and a half of it was spent cleaning up the scar tissue from all of the abrasions that happened during the accident. His dr. told me that healing was going to be slow and difficult...he told Jeff as well, but for some reason, Jeff thinks that it ought to be moving along a little faster than it is! :)
Lessons learned from this..... 1)Friends and family are CRUCIAL parts of your life. Jeff's sister and husband flew up from Anchorage after the accident. His dad flew up from Iowa to help with the kids. And my church family provided us with meals for two weeks plus I could call any one at any time if I needed anything. I could go on and on with the things that people did for us. It blew my mind. 2) I will never again take my husband for granted. Our marriage has been growing stronger over the years, but this has shoved it forward even more. He is God's perfect gift to me and he completes me in everyway. I don't want to walk through this life and raise our children without him. 3)Diabetes can take a back seat! Blood sugars haven't been perfect (but really...when are they?) but Jada is doing great. I've learned to trust other people with her in ways that I never would have before.
So...this has basically been our life, with diabetes on the side. Accident, surgery, recovery, a little bit of normal...then more surgery and a whole lot of recovery. Life should be getting back to normal for us soon. I'm starting my summer schedule at work...going to nights rather than my typical early mornings. School is out this week...the weather is amazing (after a VERY cold winter) and I'm ready to get back to my real life!!

I Want to Hide in My Room and Cry.......

I don't want her to see the worry...or to ever feel the knot in her stomach that I had when the meter rang up a hefty 540 blood sugar this morning. My first clue when I got home from work this morning was the uber dry lips that she had. We took the older kids to school, then when we got home, she asked for a glass of water. Guzzle. Gone. Then another glass of water. Guzzle. Gone. Or...how about the ultra sweet breath that I haven't smelled in such a long time, but recognized at the first whiff? Blood sugar check. Whew.....540. Gulp. More water Jada? No..but she really had to go potty! Gee...I wonder why.... I grabbed the ketone strips and she laughed.....peeing on those darn things for some reason are SO much fun. Large ketones....not a surprise. Obviously, something was wrong and it was most likely the site. And sure enough, when she pulled it out (which is also a tremendous amount of fun for Jada), the cannula was practically bent in half. Ugh.

I checked her at 3 a.m. this morning when I got up for work. She was 300. Lately, she's been high in the middle of the night, so I didn't think too much about it, just gave her a correction and off to work I went. Jeff always takes care of her breakfast, because I'm not home and normally, I communicate with him through a note on the kitchen table about any "action" that I've taken in the wee morning hours, but I didn't today. Looking back through her numbers, I see she was still at about 300 when she ate her breakfast. If he had known that I gave a correction and it didn't work, he most likely would have changed the site.

Guilt. It's what I'm feeling. Not communicating. Being in a hurry...both of us wanting to just get to work and get our day started. I have fought back tears all morning. Jada didn't want to do a site change...they've been a battle and she prefers Jeff doing them. Big, hot, salty tears rolled down her cheeks as she fought me. And I could hardly hold mine back. If it were an option to run to the bedroom and lock the door, bury my face in my pillow and scream....I would have. There are days, like today, that I just don't think I can do this anymore. But I see how well she does this life, and think...how can I not? And I will.

Where Do I Start??

I don't know where to start since I last blogged.....life has been absolutely C.R.A.Z.Y over the last month. I find myself so mentally and physically worn out at the end of the day that I have no energy left over to blog...even though I have blog material coming out of every orifice of my body!!!! So maybe tonight I'll just touch on a few things then over the next few days, get a little more detailed about what we've been up to.

Obviously, our biggest news is Jada starting on the pump. She started the Minimed Paradigm Revel a month ago. The newest member of our family has been named Pinky.....and do we ever love Pinky. Pinky gets sick, she watches cartoons and reads books with Jada. I don't know how we've lived without her! Pinky, with her ability to upload info to a computer, has really been teaching this Mama some lessons! Pinky doesn't lie....and lets me know where I need to do my homework!!! It's called tough love and Pinky does it well........((sigh)).

We also have a new, wonderful doctor! I wasn't sure what would happen after Dr. Woodward passed away, but the clinic shifted Jada's care to other Dr. who takes care of all the Type 1 kids here in Fairbanks. I couldn't be more pleased. And Jada adores him. We've seen him twice since starting the pump and he has her in stitches each time we go in. Dr. S. raised two daughters with Type 1 Diabetes, so he gets it as a parent. He knows about the worry and frustration that accompanies the management of this disease. He GETS IT! I really need that right now, because I am in uncharted territory with Pinky.

School. Jada started the pump on the first day of school for my other three kiddos. Hello. Could I ask for a worse time to start something so HUGE??? I really don't know if it was the best time to start, because I haven't been able to spend the time "tweaking" those dang ratios and basal rates that I should have. Because I'm tired. ALL of the time! Oh and Jada will start homeschooling kindergarten at some point in the next week or two. I'm not ready to send the big D to school yet!!!

Work. I LOVE my job. So much fun...so interesting. I, yes, I, boarded Snoopp Dogg on a plane last month. Anyone jealous??? haha! :D I had been unsure if I would be able to permanently keep the job as I was hired as "seasonal" but last week was told I would be staying on and was able to bid for a shift. I will continue working my early morning hours 4:15 am-8:15 am. These hours can be exhausting, but they work so well for the family. I worked 30 hours a week over the summer, but this week, my hours go down to 20...which is WAY okay with me!!!

Okay...I need to wrap this up. Got to go and meet the hubby. He's been off delivering a load of wood (we'll just call him Jeff the Lumberjack--kind of sexy, eh?) :D . The wood business...something else to blog about and way that God has provided for our family!

Okay..I PROMISE....I will blog more, I will blog more, I will blog more, I will blog more........