Wednesday, August 10, 2016

One Drop is All it Takes

I looked at Whitley in the dark hours of the night on July 26, 2004 and said, "I think we need to go to the ER."  Knowing how terrified I was of needles, Whitley gently said to me, "Shelly, if we go there you know what they will do, don't you?"  I responded, "Don't you think he needs an I.V.?"  No normal parent wants their precious 3 year old to get an I.V., but we both knew it's what Isaac needed.  I don't remember exactly what time we got there but it was probably around 2 in the morning and our son was no longer holding down water.  We told the doctor about some symptoms Isaac had days before he started vomiting.  At first Isaac was thirsty a lot and then that turned into him even refusing food and only wanting to drink.  We told him that Isaac was potty-trained before we left Texas, but now couldn't make it to the bathroom and was having to wear diapers again. We even told him that he was soaking through his diapers at night and we were having to change his sheets.  We told him that after a couple days of that we were outside in the heat and had given him gatorade that he almost immediately vomited.  That was the first time he vomitted and now it wouldn't stop.  After we relayed what had happened over the last several days, the doctor left the room and the nurse began rubber banding all of our child's limbs, hunting for a vein he thought he could stick successfully.  He kept muttering about how dehydrated Isaac was.  I remember him saying, "Once we get the IV in we will do some blood tests to find out what is going on," but his eyes were terrified and that was making me nervous!!  I could tell that he did not want to stick our little boy.  Isaac wasn't making his job any easier because any time the nurse even touched him, Isaac would let out a blood-curdling scream.  It was really loud in there!  All of a sudden the nurse said, "I'm going to go call our OB nurse.  They stick these little guys all the time."  I was relieved and thought to myself, "Yes! You go do that!"  As he stepped out of the room, though, there was a conversation we heard between the doctor and the nurse.  The doctor had assumed from all of the screaming that the IV had been done.  When he found out that this ER nurse wanted to call the OB nurse he said, "Well... wait...  Has he thrown up since he's been here?"  "No, not since we gave him the suppository."  "Well, if you can get him to consume [X amount] of Pedialyte, we will just let him go home."  I'm not sure what the backstory was here.  Sometimes I think he just didn't want to make a life altering diagnosis at dark:30 of the morning.  We left with no i.v. and no urinalysis or blood tests.  As I looked down at the blue sheet of paper that the doctor had written the diagnosis of "stomach virus" on, I even felt dumb about mentioning the drinking and peeing.  We ended up making a series of poor decisions based on this thought, "It's a stomach virus... it'll go away."  This "virus" got stranger and stranger to us though because eventually he stopped throwing up, but was still withering away, looking more and more frail.  I called our doctor's office in Texas before we left Montana.  I told the nurse that Isaac had been very sick and had been to an ER.  I told her that they gave him suppositories to last a couple of days but that he was still very sick.  Knowing that Dr. Rakov wouldn't have any openings on the Monday after we got back, I said anyway, "I really need Isaac to be the first person Dr. Rakov sees Monday morning."  I guess she knew this phone call was serious because she just told us to come in at 9 on Monday.  There were so many hospitals we could have stopped at between Montana and home, but I remember stubbornly thinking that we had already gone to an E.R. and they didn't do anything so why should we go again?!  My feminine intuition had been put through the ringer!  Sometimes I would think that we should just stop at a hospital somewhere, maybe when we got to Texas.  Then, I would recall the ER trip, dig my heels in and think, "Home.  We just need to get him home!"  My stomach is sick right now thinking about all of this turmoil that I felt even though it was twelve years ago.

Twelve years ago today, on August 9th, 2004, we took Isaac to see his doctor.  When we took his frail body out of his car seat, we put him back on the pillow that we had been carrying him around on for the last couple of days.  He was so frail and bony that I was seriously afraid he would break.  He could no longer walk, no longer would talk, slept almost constantly, and only woke to let out pitiful screams.  He was just over 3 years old, but he weighed a frightening 19 pounds.  He was small to begin with so maybe it's just better to say he had lost 1/3 of his body weight in a week and a half.  By the time we were sitting there in Isaac's doctor's presence, we had no eloquent descriptive words to say about what had been going on.  All I could think was, "Please, FIX him!"  Every time the doctor would touch him on the abdomen Isaac would scream, so he wrote orders for an x-ray of his stomach, a sonogram of his appendix, a urinalysis, and Isaac had the "famous" blood draw.  As the doctor left the room, he said a reassuring, "We will not stop until we figure out what is wrong."  We had waited a week to hear those words we needed to hear!  We went back to the clinic after we were finished with everything at the hospital.  When the doctor came into the exam room we were waiting in he said, "Mystery solved!  Isaac has Type I diabetes and we need to get him to UMC in Lubbock as soon as possible.  A non-diabetic person usually has a blood sugar number of about 100.  Your son's is 1,260."  I did not burst into tears.  In a weird sort of way those words were a huge relief!  We were so thankful to know that there was a solution.  Isaac spent 3 days in PICU as they slowly brought his blood sugar down and 6 more days in a regular room while his parents learned how to take care of him.  Those first three days were truly miraculous!!  When we took him home, it was still another couple of weeks before he could walk again and there were a lot of things that he had memorized before the age of three (words to songs, for instance) that he had to be retaught.  All in all though, his recovery was quick.

It would be several days before I could cry.  When the tears finally did come they weren't so much about the disease diagnosis itself, but for how bad my child had to get before he got what he needed.  What was heart wrenching for me as a parent was that I didn't feel like I stood up for my child the way that I should.  This is part of the reason why I try to write something every year on his diagnosis anniversary.  We may not have done the things that we should have in the days leading up to his diagnosis, but because of that we know what diabetic ketoacidosis looks like!  Sadly, there are other parents out there who have experienced loss of a child due to the same thing.  Many times those losses at the onset of type I diabetes are due to a misdiagnosis experience similar to ours.  This link is to a story we followed last summer.  Kycie's diagnosing blood sugar was lower than Isaac's.  We were not far from this being our story at all and I struggled through this family's journey a lot because I just don't understand why it wasn't ours.  These things do NOT have to happen!  If you notice any of the following symptoms all it takes is one drop:

Even though our dx story is painful to share, we share it because education is so important and we don't want any more of our loved ones to learn all of it the hard way.  Knowing the warning signs listed on this poster is a good start!  Twelve years ago I thought diabetes happened from having a poor diet and wouldn't have dreamed a three year old could get it.  Educate yourself, please, if these are your perceptions too.  This post might not be the best one for educating about why diabetes occurs but there is good information out there! has great information and for the purpose of this post, it's the only link I'll leave at this time.

Before I close, we always try to do a little something special on August 9th every year because Isaac's life was saved that day twelve years ago.  Isaac we celebrate YOU today, so I can't just leave this post only telling about the past.  You were a fighter at age three and you are still one tough kid!

The day we got Isaac's first insulin pump.

First insertion of his Continuous Glucose Monitor about 5 years ago.

The CGM helps us stop problems before they are major ones, gives us alarms when problems are occurring and lets us know more information than what a single blood test does.  I have to say this tool is so valuable at night (I'm typing this after a night of multiple low blood glucose alarms) and during/after exercise!  This information is sent to our phone and my smart watch as well.

at Texas Lions Camp this year

We are so proud of you, Isaac!

Thursday, July 14, 2016

Victory Grace: A Name Blessing

Dearest Victory Grace,

          May your name be a testament of a wonderful man that you were named after, Victor Englert.  Your daddy and I chose to honor him by naming you after him and hope this blesses you as you grow to understand its significance.  He was precious to your daddy and I as well as your whole family.  Victor was your mommy's paternal grandfather.  He flew 30 missions as a waist gunner in a B-24 Liberator in World War II, and lived to tell the story.

He was a craftsman who worked diligently with his hands his whole life.  He was a jeweler for a while, built many houses, and muzzle-loading rifles to name just a few things.  He was a very special man in our family!  One day as he was knowingly nearing his death, your family went to visit him.  There was a moment he spent just with me and he told me some of his wishes for us and our family.  I was pregnant with your brother, David, and knew that we were having a boy.  I told him though that if we ever had another baby girl that we were going to name her after him.  He gave me a questioning look and then asked, "Victoria?"  I said, "Well, not exactly, but close!  We will name her Victory!"  He smiled a very proud, satisfied grin, much like the one in this picture and then he repeated your name.

That conversation was about seven years ago and you are our seventh baby!  Your siblings found out that you were a girl on the 7th anniversary day of your great grandfather Victor's passing.

January 14th, 2016
Your siblings opened a box that told them that you are a girl.
They were so very excited to have a new sister!

I called your great grandmother, Dorothy, that day to talk to her about missing your great grandfather and also to tell her that we found out we are expecting a girl and that made her so happy!  She had guessed that you were a girl, by the way!  I also called her immediately after you were born to tell her your name and she was so proud!  You can't see yourself really in this VIDEO that your sweet daddy took because the doctor and nurses had just placed you under my shirt to keep you warm and cozy while I talked about you.

          Victory Grace, we pray that your name would be a testimony that will help us all remember that you are the baby girl who helped turn our tears of sorrow into the tears of victory that tell the story of His grace and faithfulness to us.  Not everyone is able to have a healthy pregnancy and baby born after miscarriage or still birth loss.  Your daddy and I are painfully aware of that fact.  There is one thing we know for sure though.  God always fulfills His promises and gives a glimpse of the beauty of His hope for us.  One way I know this is because I know that rainbows exist.  They come after the storms in nature and after the storms of this life.  Sometimes they are very hard to spot right away and then once you see them you can't take your eyes off of their beauty.  Other times they are very obvious.  You are an obvious rainbow for us, sweet Victory.  God gave us the grace to hold you in our arms for as long as He will allow.  We are so undeserving but so very thankful.

Thank you to your sweet Auntie Amber and Uncle Justin for the very meaningful outfit!

          Victory, may your life also be a testimony of the grace that He gave us on the cross and the victory He gave us through His resurrection.  This is what matters most.  Your parents can't explain with all the words in the world how significant and important Jesus is, but HE is the Word and He offers the grace we hope you will call on and claim as your very own.  HIS victory is YOUR victory too!!

With much love from your daddy and your mommy, 

Wednesday, July 6, 2016

A Pearl of Remembrance

Dear Pearl,     

          I've thought many times about writing a blog, or a thought or a letter to you over the last month.  I guess in effort to say the most beautiful, eloquent words...  None have come.  I would be remiss to continue to say nothing though, on this day that I'm thinking of you so much.  Your due date was a year ago today.  A year ago I was in a much different place than I am today because when your due date was nearing I missed you so much more than I did when you left us initially.  So over the last month Facebook has reminded me of blog posts I made about you and because of you a year ago.  I've re-read the grief, the hopes, re-felt the turmoil, and even rolled my eyes at myself for my whining a time or two.  Reading those things through the lenses of healing and peace brings new and strange emotions.  
          Over the last 10-11 months in particular, I've found myself accepting God's grace and healing emotionally and physically.  I've received words that most mothers who miscarry don't ever receive.  I am thankful that words of openness and vulnerability led to close friendships and understanding for other women.  Then there was the conversation I had with a specialist about ectopic pregnancy.  I'm not completely sure why feeling like I know what happened when I lost you helped so much with closure, but it did.  I guess it's because I'm aware from other miscarriages I and others have experienced that the "why" is usually not able to be determined... so having a "why" answered and realizing how much more difficult it could have been makes me very thankful.  Because of sweet you, I also know about a special prenatal vitamin my particular body needs that I didn't know I needed to be taking.  I thank you and the Lord for the journey that led to helping your little sister out like that!  
          We are so very happy to be waiting for your little sister a year after we should have been waiting for little you.  It's bitter-sweet... but mostly sweet.  I still miss you though.  Maybe that's really all I wanted to say.  You were very wanted and very special...  

I miss you and love you,

Your Mama

Monday, March 21, 2016

Luke is Five!!

Dear Luke Nathanael,
        You are shy, sweet and full of life and light.  You are always so observant and always thinking.  You love to work puzzles and do pretty much anything with your hands.  You like to color and draw, play with play-doh and do crafts.  You love having a routine and notice when something doesn't happen when it should.  Bumps in routine used to upset you a lot before you could talk about it, but now you usually just tell us what you noticed.  When you speak, you usually have something really important and intelligent to say.  You love rhythm and music, but usually don't sings songs.  You love to beat-box them with your own rhythmic syllables.  The musician in your mom absolutely adores this!  You are so smart and helpful, handsome and kind.  We love you, precious boy!
Here's a quick glance of your 5 years with us!

You were born on Monday, March 21st at 5:12 a.m.

Sweetest smile...

And dimples!

You got to announce that your baby brother Timothy was on his way!

You were pretty proud of him too!!

You still love these fingers... Oh dear!

Sweet friends forever!
Such a tender heart for God...

And for taking care of others!

Such a good helper...

Such a good snuggler and buddy!

Your great-granny came to your 4th birthday party!

Your brother David played barber and... uhm... needs more practice,
so Daddy gave you your first buzz-cut!

This year you caught your very first fish!

We are so proud of you, big boy!

Friday, March 11, 2016

David is Seven!

David Josiah:
3/12/09;  7:07p.m.;  5lbs 10oz

Dear David,
     You are tough and tender.  You feel big feelings and are seldom in any kind of mediocre mood.   You are loads of athleticism in a small package!  You are the sweetest little singer.  Click here.  -So very sweet!!  You love horses, riding your bike, and TaeKwonDo class that you started being a part of recently.  You are learning to read and your brother Isaac is helping you with that which makes your parents so proud of you both!  You absolutely LOVE picture taking time and know exactly how to work the camera with your adorable personality and poses.  The pictures in this post are all just from your sixth year, which was a major growing-up year for you!  David, you were a bright light for your mom over the past year.  You were a "rainbow baby" for us and that gave me hope on some really dark days.  Your smile helped us remember that there is always hope to be had no matter what the future may hold.  What a blessing you are to us for so many reasons!  Your family loves you and your parents love being your Mom and Dad!

David grew 4 inches and gained 7 pounds in his 6th year after starting on growth hormone shots.

Taken right after his first shot.  He's a brave boy just like his big brother!

David loves to go fishing!!

He loves to climb and climb!

Pictures of David hamming it up at the Ben Richey Boys Ranch Fundraiser

Feeding the mule some watermelon.

Our little jockey loves riding horses with the family!

More fishing!!

-And more being charming and funny

David learned to ride a bike last October.... Except there wasn't any teaching from parents or "learning" to it.  Because he has such incredible balance like his daddy, he simply could ride a bike... just like that!  He said it best, "I just believed in myself to do it!"

Happy Birthday David!!!