Missy

I love reading all the posts people make on Facebook during the month of November where they tell things for which they're thankful. I think a lot of people lose sight of all the positives in their lives, only focusing on the negative, so for me these posts are like a ray of sunshine.

I have a lot to be thankful for and even with all the drama that finds it's way into our lives I try to never lose sight of the good.   I'm blessed beyond belief and so thankful for my children Brandi and DJ, my husband Milton and my precious granddaughter Bella.  I have wonderful parents (Burford, Joyce, Jim and Kay) and awesome siblings: Kelly, Jimmy (Oakley), Robin, Karen, Laura, Missy, Jimmy (Parrott) and Charlie.  That's right folks, I have 8 siblings - and yes, two of my brothers (and one of my fathers) are named Jimmy (well actually James and Jimmy, but I digress)  All of my brothers and sisters are wonderful, thoughtful people whose hearts are full of love and kindness. Any of them would - and have - stopped whatever they're doing to run to the aid of another family member...but nobody...and I do mean NOBODY has shown the depth of devotion for her sibling that my sister Missy has.

On March 9, 2010 my brother Jimmy (pictured above with Missy) was admitted to the hospital with what he believed to be bronchitis. Unfortunately the urgent care doc he'd seen had misdiagnosed him and he actually had a bad case of double pneumonia....I'm talking REALLY BAD...so bad that it almost killed him several times.

The small county hospital he originally went to immediately transported him to a large hospital in St. Louis and upon his arrival there he had a seizure and stopped breathing.  It's a long and heart breaking saga, he was put on a ventilator and was in a coma for a very long time.  He developed every complication you could imagine; his lungs collapsed several times, he contracted the MRSA virus, he developed a yeast infection in his blood, he went into kidney failure, and there was more...much, much more.

My family and I basically lived at the hospital for the first few weeks, but eventually my brother Charlie and I had to go back to work and my sister Missy stepped up to the plate.  For months she and Mom Parrott sat by Jimmy's bedside, nursing him back from the brink of death.  Missy educated herself on Jimmy's conditions and became a walking, talking encyclopedia of information, medications and treatment options.  She hunted down the best rehab center and got Jimmy a bed there, she fought with insurance companies, doctors, whoever she had to go up against to make sure that Jimmy got the best care available...and almost three years later she's still caring for Jimmy.

My brother is better, a lot better actually, but he's still not well.  There have been many hospitalizations over the last (almost) three years and she's been there every time. She and Mom P give Jimmy around the clock care and it's because of them that Jimmy is alive today.

A lot of people say they'd do anything for their brother but I wonder if the unthinkable happened how many actually would. Missy gave up her life, her job, her freedom...EVERYTHING...to care for our brother. For 2 years 8 months and 15 days her sole focus has been Hobb's continued care and recovery. She is personally responsible for every major improvement for him...and she continues this commitment - without hesitation - indefinitely.

So this month...and every day of every month, I'm thankful for my little sister Missy. She is a loving warrior and I want to be just like her when I grow up.

I love you Missy

Drowning no more!

When my son was a little boy he got a terrible case of food poisoning after eating old ice cream at his Grandma Moder's house.  In all my years I've never seen a child vomit so much and he ended up having to be admitted to St. Louis Children's Hospital for several days.  It was my first experience having one of my children in the hospital but my most clear memory of the entire stay had nothing to do with my family at all.

It's funny how our memory can take snapshots of moments and replay them over and over throughout your life. It's like your subconscious knows that this moment will need to be remembered so it burns the image into your brain.  In our case the image that was burned was that of an exhausted and obviously distraught mother and a very sick teenage girl huddled around something with another woman who was obviously a hospital employee.

I couldn't hear what they were saying but I was literally stopped in my tracks when I saw the mother. The look of total despair and being overwhelmed were so evident on this poor woman that it was all I could do to stop myself from walking up and offering to hold her while she cried.

When the nurse I was walking with realized I was no longer beside her she came back and looked at the family with me and said, "I feel so bad for that family, their daughter was diagnosed with Juvenile Diabetes last night and they're going through our training for diabetic families."

Little did I know that only a few years later I would become that mother and know first hand the devastation she was feeling.  I would also look as overwhelmed, exhausted and lost as she did.

When your child is diagnosed with Type 1 (Juvenile) Diabetes your entire life changes in an instant and from that moment on you live in survival mode.  The thing I remember most from our "Diabetic Boot Camp" 3 day training session in the hospital is Brandi and I sitting down with the diabetes educator and being told that Brandi could eat anything she wanted - in MODERATION - but that we would have to become experts at reading nutrition labels, determining the number of carbs she was eating, then doing the math to figure out exactly how much insulin we would need to inject to cover the carbs consumed. Thank God I had always been good at math, because it can get really complicated to figure the dose out at times.

Survival mode becomes your new normal when your child has diabetes.  You never really get use to it, but you go on...because going back to your old life isn't an option.

Unfortunately for some of us there's another level beyond survival mode...I refer to it as "Drowning Mode". Our family went into drowning mode four years ago when Brandi's body no longer responded to her daily insulin injections the way it should and she became so sick I knew she was going to die.

There is nothing worse...absolutely NOTHING...then looking at your child and seeing the life fading from them.  I know many of you are nodding your heads and saying, "I know, it's terrible" but trust me, you have NO idea what it's actually like until you live it.

We were lucky because eventually her doctor figured out why she had become resistant to insulin...complete adrenal failure... and although she was now able to take daily medications to keep the adrenal failure from killing her, we now had something much worse than diabetes to deal with, we had insulin resistant diabetes!

So for four years we've been in drowning mode where our lives have been nothing but a continual circle of dangerously high blood sugar levels, astronomical levels of insulin injections, DKA, more hospitalizations than I can count, seizures, comas, weight loss (Brandi...not me), doctors appointments, MORE doctors appointments, calls to 9-1-1 when she was too critical to be taken to the hospital by car, days of no sleep, vomiting...lots of vomiting due to high blood sugar, research for new treatments, being told Brandi needed a pancreas transplant, never ending fundraising for a transplant, hospital bills, medication bills, doctor bills...did I mention no sleep....oh yeah, working 80 - 100 hours a week to pay for all the above while trying to provide a good stable  home environment for a toddler.

We weren't surviving...we were drowning, plain and simple.  No matter how hard we worked, no matter what we did it was never enough, Brandi wasn't getting better - she was actually getting much worse. 

In hindsight it seems like things came to a breaking point for our family in March of this year during one of Brandi's multiple hospitalizations. Blood work showed that Brandi was severely malnourished....we're talking a reading of ZERO on the test, something that none of her doctors had ever seen before. Her endo described the reading as that of a starving Ethiopian child just hours before they die. Yep...THAT got our attention.

So now they had to figure out exactly none of the food Brandi was eating was providing the nourishment it should, and we prayed...and we asked EVERYBODY to pray for her. We received a miracle (there's really no other explanation for it) and Brandi's levels started going up again...but she still was a very sick young woman.

And then, in August our family received a miracle in the form of a diabetic alert dog named Hope. The moment Hope met Brandi for the first time she alerted to a high blood sugar - another picture that is burned into my brain...that first alert.

Life has changed a lot since Hope came to our home. Brandi's blood sugar levels are still all over the place (and due to an additional seizure medication we now deal with a lot of lows as well as highs) but Hope catches almost all of them. Hope alerts all the time, she alerts to Brandi, she's alerted to Bella (who was 200, which is above the 180 Hope alerts to for a high, but still within limits for a child of her age) and recently it was pointed out that Hope has been alerting to ME.  Okay, the truth is that Brandi's been telling me that for weeks, but I blew off the notion because I'm not diabetic. I finally listened when our trainer Dana pointed out the same thing during lunch one day and told me to check my blood sugar, which was 111 only 1 point above Hope's alert level of 110 - BUT I had just eaten so obviously my level had been below 110 when she had been alerting. I was encouraged to check each time Hope alerted to me (which I have) and she's been right every time, with my blood sugars ranging between 80-100 at each check. 

The other day Hope alerted to Brandi during a training session and Brandi told Dana that she knew she was really high, so I immediately felt the panic of how high? 500? 600?  Too high to register?
The glucometer showed 256...definitely high, but not "drowning mode" high.

I think it was that moment that I realized we were no longer in drowning mode and really hadn't been since we got Hope. Not one hospitalization since her arrival...not one bout of DKA.

So now I am deeming our family firmly back in "Survival Mode" and I must admit it feels great to merely be surviving again. I feel like I can breathe and am actually starting to enjoy life again...something I haven't done in years.

Besides the obvious joys of seeing Brandi more healthy, there's the added bonus of "me" time.  I forgot what it was like to take an hour a day simply for myself, but I do it now without guilt. I use the time to walk, which is not only making me physically healthier, but improving my emotional health as well.  I'm learning to relax...I'm not petrified at the thought of going to work and coming home to a dead daughter, which means I can give people calling in with emergencies 100% of my attention.

I would love to live a "normal" life again, but I know it's never going to happen...so for now I'm content to be back in survival mode, counting carbs and watching my D-Child the way every other D-Mom and Dad does.

The Grandma Tradition



I love to cook, I love everything about it.  I like planning a menu then shopping for everything needed to make a meal for my family and friends.  I like picking through all the fresh produce for the best of the best to put in the dish.

Probably my fondest memories as a child is sitting on a yellow stool next to the stove while my Grandma Parrott cooked meals. She explained everything she did with such patience and it never seemed like a cooking lesson, it was just spending time with my granny and even though it's been more than 40 years I can remember those times like it was yesterday.

When my daughter was born I had big dreams of teaching her to cook, but Brandi had absolutely no interest in learning. While I like to make everything from scratch she is perfectly happy opening a frozen pot pie and throwing it in the oven. To this day she prefers chicken and dumplings made from canned biscuit dough rather than rolled ones made from scratch...an art I only recently mastered.

My dream came true with Bella though, from the time she was old enough to sit up she has loved sitting next to me in the kitchen and helping me cook.  At only 4 years old she can tell you exactly how to make biscuits and gravy...from scratch.  Likewise vegetable beef soup, roast, and homemade pasta.  I have adorable pictures of her stripped down to her diaper, sitting on the counter and kneading dough.  I learned quickly that it was an absolute necessity to strip her to the skin because the first thing she always did was cover herself in flour.

Today I got to sit back while Brandi and Bella made the pasta from start to finish...it was such a joy to watch. About half way through the long process of taking those little clumps of dough and feeding it through the pasta roller - 10 times through the roller for each clump of dough, Brandi had to stop, but when I stepped in to help Bella finish she sternly told me that SHE could do it by herself...and by George she did!

As we sat at the dinner table we praised Bella on her masterpiece and I must say...it was really quite good!  I can feel my grandma smiling down from heaven as the tradition continues.



Rights, Rants, and Remorse

I am a big believer of the rights as set up in the U.S. Constitution.

I believe in the right of free speech - even when I don't like what some people say.

I believe in the right to bear arms so you can protect your family - because believe me when I say the bad guys will ALWAYS find a way to obtain weapons to harm those you love.

I believe people not only have the right, but an obligation to vote - because it's OUR country, OUR president, OUR representatives, OUR senators...I've always said if you don't do your part and vote then you have no business bitching about what our lawmakers do while in office...you have the right to bitch...but, well...(see item #2)

I believe that all Americans should stand united after the elections. Whether you voted for the (fill in the blank - President, Governor, Representative, Senator, etc) they are the ones representing all of us so while we should respect the office I also think it's important to keep in contact with those in office.  Go to your state capitals, drop into the offices, take time to meet with those representing you and tell them what you want.  Send them emails, tell them your thoughts, what worries you, your hopes for the future.  These people can't adequately represent you if you don't give your input.

Those are my beliefs that I have followed every since I've been old enough to vote, which is why I'm shocked at my behavior tonight.

When my husband came home from work I asked who he had voted for in the presidential race and was a bit surprised to find out it was not the same way that I had voted.  It doesn't matter who each of us voted for or the reasons we voted the way we did...it's our RIGHT to vote the way our heart and conscious leads us to vote.

Instead of acting the way I should have acted, praising him for getting up early so he could vote before work, I blew up...REALLY blew up.  I think my exact words were "ARE YOU FUCKING KIDDING ME!!!"...and that was followed by a lengthy dissertation on why his vote was the wrong choice, how it was going to affect our family, Brandi's medical insurance...on and on my rant went.

My husband, being the kind, even tempered man he is talked to me in a calm voice and explained why he felt he had to cast the vote he did...and I still bellowed on.

So here's the thing....I HATE people who act like that...who react with narrow viewpoints and unkind words, who lash out at others who have opposing view points...and suddenly I was one of them.

I am chalking my outburst up to the massive dose of steroids I had injected into my body today...steroids have a habit of making me a bit emotional...and by that I mean I get a little nuts.  I'm not using the steroids as an excuse because frankly there is no excusing my behavior, but I do believe it's the reason...because that is not normal behavior for me.

I apologized to my husband...okay, it was about an hour later...but I did give him my most sincere apology...and of course he accepted it - because he's just that good of a man. 

So together we will continue to work together to improve - or at least maintain - life for our family. We will BOTH support our president because like it or not he IS our president.  We have each vowed to be part of the solution and not part of the problem, we will do our best - just as we have always done - to support our country and it's constitution.

This thing I call "D"

 

 

Today begins National Diabetes Awareness Day and I have been putting pen to paper (okay, fingers to keyboard) all day trying to write a witty yet interesting blog about diabetes in general and Type 1 diabetes in particular.  I've scrapped my first three attempts because none of them said what I really felt. Oh, they were full of myths and facts, statistics and antidotes but they didn't really tell you what I wanted to say...what I really think, what I really feel about diabetes and the impact it has had on our family.  I realized finally that I was writing what people expected to hear, not what I really wanted them to know, I was making it more difficult than it was because my true feelings about diabetes can be summed up in two words:

 

DIABETES SUCKS!!!

 

 

I'm not talking about a laid back west coast kind of "diabetes sucks,"  I'm talking about a rage filled, slam your fist into a wall, scream at the top of your lungs with tears streaming down your face "DIABETES SUCKS!"

 

I can't sit here and tell you what it's like to have diabetes, how it feels to stick my finger 10 times a day or stick a needle in my belly 5 or more times a day, because for some reason even though I've basically filled my body with nothing but food with almost no nutritional value and Coke (the soda) and lots of carbs and sugar over the last 20 something years, even though I'm a hundred pounds overweight, for some reason God has blessed me with a perfect freaking pancreas, perfect blood sugar levels and a beyond perfect A1C.  I'm telling you right now there's no justice in life because if anyone deserves to have diabetes because of the shit they've put into their body it's me.

 

What I can tell you is what it's like to see your child, the fruit of your womb, a person you love more than life, the joy of your soul,l stick themselves all those times and give themselves all those shots.  I can tell you what it's like to watch your child lay in a hospital bed in a coma, fighting for her life.  I can tell you how nobody is allowed within 50 feet of her if they have so much as a sniffle, because diabetics are more susceptible to all types of infections and if she gets sick it will mean another hospital stay.

 

I can tell you what it's like for her to be feeling fine in the morning and be hooked up to IVs that same night.  I can tell you what it's like to have your sweet natured daughter, who would cut off her own arm rather than hurt another person scream obscenities and throw things at you because her blood sugars have suddenly dropped and she has no control over herself. I have dozens of stories of conversations I've had with her where she's made absolutely no sense because her brain wasn't getting the food it needed to function.

 

I can tell you what it's like when a group of doctors tell you that she has a rare complication of diabetes and needs an organ transplant to survive, and I can also tell you what it's like to go from having money in the bank, a decent savings account and a 40 hour work week to working 80-100 hours a week and being flat broke because of the medical cost associated with diabetes.

 

I know what it's like to work back to back 18 hour shifts when I'm so exhausted all I really want to do is cry, or when I'm so sick I can barely keep my head up. I also know what it's like when there is no overtime but the meds are still needed so you have no option but to take out a payday loan (at 400% interest) to pay for the insulin that will keep your child alive for another 30 days.

 

I can tell you all about setting your alarm clock and sneaking into your child's room every couple hours while she sleeps to make sure she's not dead, or about the mornings I've woken up in a panic because I slept through the alarm and the terror I felt when I reached her room, afraid of what I might find.

 

I can tell you about selling everything I didn't absolutely need to raise money for a transplant, about planning fundraiser after fundraiser and never being able to take a break from it. 

 

I can tell you about being an advocate for my daughter, about going toe to toe with doctors and nurses and demanding the best care for her.  I can tell you what it's like to sit in a car in the middle of the night and listen as my daughter tells me exactly how she wants her funeral.

 

I can tell you about the inner strength these kids have in general and that my daughter has specifically, about how in spite of having this vicious disease that keeps trying to kill them they just keep on living life to the fullest.

 

And lastly I can tell you how I and every other D-Mom and Dad I know are devoting our lives to not only keeping our beautiful children alive, but to finding a cure so your family never has fully understand this thing I call "D".