The moments of the year that passed......

Again I find myself sitting at my computer with a ton of things to do but I am thinking about the past year and the tears begin to roll down my cheeks once again.  Here is what I am thinking right now:

• That horrible moment a year ago when the doctor said those words - DIABETES, Type 1 - the fear, the uncertainty, my daughter's health, the change it was going to make in our lives.
• The scary memories over the past year - the "lows" that make your heart skip a beat, the "highs" you don't understand, the caller id showing the school nurse is calling, the moments at 3am when you can't get back to sleep because of the "low" or the "high" and your mind is playing bad tricks on you!
• The sad moments over the past year - my daughter feeling different than others, the tears on my child's face when she just doesn't want to be pricked by a needle AGAIN, the big blue eyes of unfairness when she just can't have that food at this moment.
• The normal memories everyone has - we celebrated all the holiday's, all the birthdays, all the moments in life everyone celebrates - with a "little" difference.
• The moments of wishing for things that will not be possible - those moments when I was praying fiercely to just have my mom back for one moment to hold my hand - to have my life back to where it was - to not have to make the hard choices like setting my career to back burner or letting my kids see their mom at her weakest moment.
• The stresses over the past year of the changes - driving to Baltimore for medical appointments, the idea of sickness in our house, the change from needles to a pump, the cost of medical care and all the medicines needed to maintain my child's health.
• Some are good memories from the past year - watching my daughter just one week after diagnosis back on the baseball field, watching her continue her life without regard to this disease, the support that poured out from my friends and family and all the new friends that have come into my life to hold my hand.
• And the BEST memories EVER - the smiles on all my kid's faces when I see them after school now that I pick them up each day - the laughter I hear from the den as they read a book that makes them chuckle - the loud feet running down the stairs as a friend comes over to play - the hugs and kisses (even from my 8 year old son) that I get every day no matter what. Even though my kids have seen my weaknesses over the past year the best thing to have happened is that my kids have also grown to understand life isn't always fair but with love, laughter, faith and a little hope you can keep on smiling and keep on moving forward.

Now it is your turn!

You are reading this because you have a connection with us in some way.  Someone in your life lives with this disease, you know us personally or you are just interested in what it is like to live with this disease as a family - well tell me about it. If you or someone you love lives with this disease - tell me about them. If you are a part of our lives and have lived this disease with us over the past year - tell me about it. If you are just reading to learn how we deal and manage this disease - tell me your thoughts. I am very interested and hope you will take a moment and leave a comment below that you can share with me and others. Communication of what we deal has given our family a freedom from this disease I cannot put into words - see if you can feel a little of that also!

Until there is a cure,

Jennifer Holdgreve

Everyday heroes...............

I was lamenting recently with a friend that has become very close that I wished I had known her a year ago when I was dealing with Allison's diagnosis. It made me realize one other way my life has changed over the past year. We have the "highs" and "lows" but we also have a lot of new friends and I also view the idea of my everyday heroes very differently.

A year ago I was focused on my family, but I was also focused on my career. My life revolved around work and family and I was looking for the next step to move up in my career. Therefore my everyday heroes were more geared around a "normal" life that most people lead - the high powered woman that has it all together or the professional that managed their career with precision and still managed to have a wonderful put together family. I saw my kids differently and my husband differently - we had not experienced a life changing event like this before - so of course I did!

My everyday heroes are completely different now (not that I don't still admire those people from a year ago but my thought process are so completely different than before)! One of the definitions of a hero (according to Merriam-Webster) is an object of extreme admiration and devotion.

I am going to take a moment to list some of my everyday heroes that over the past year have come to light - these are the people that I have extreme admiration for - more than words could express and I want to say Thank You for being my hero(es):

• All my kids teachers/helpers (Too many to list - but if you work at one of my kids school in any capacity - this is you!) - I have spent more time in the classroom/school this year - WOW - it amazes me what teachers and other staff at the school do daily, with very little resources, and they still keep a watchful eye on all those kids (especially Allison)!
• Nurse Barb and Nurse Linda - they manage a school full of kids and issues and accidents but still keep a watchful eye on my daughter like she was their own! Just like a surrogate for me and they give me my favorite part of my week day - when I pick up my kids and get to chat with them for a moment it just makes me feel better about everything!
• Dee and Jeremy - I have met a lot of new people this year and they are all so supportive - but these two helped bring back ME - they helped me realize that there is more to my life than this disease. They are not only there for me always, they want to learn how to help us - how to manage Allison's disease - to understand it - to give me a break - to give Chris a break - to just be there!
• Roxanne Dean - a hero that amazes me - she has personally dealt with this disease for many years and she has a son with this disease - and every time I see her she has a smile on her face and true since of understanding of what is happening in my life and is there to hold my hand - I honestly pray often that my daughter will one day will be just like Roxanne!
• The American Diabetes Association Maryland Staff - they lifted the fog that surrounded me after diagnosis and now they take time for me and my family even when they are busy - they even drive across the Bay Bridge for me ;-)  They teach me and help us along our path - they always lift us up and keep us going and make us feel special.
• My daughter Allison's friends - these kids find a way every day to amaze me with my daughter - they find an interest in Allison and how she is feeling. They all take time to learn about her new life and be there for her in any way they can. Her class wore ribbons in November, there are some that are raising funds and riding their bikes right next to her in May, some supporting her with her fundraiser and others just being her best friend and helping her forget, even for just a moment, that she is a "little" different and these are only a few of the things these wonderful kids bring to my daughter all on their own!
• My in-laws (Grandma and Grandpa) - my appreciation and admiration for them grows daily - they do everything they can and a year ago they jumped right on in when we were going through the diagnosis - and everyone knows the adage - "you can't teach an old dog new tricks" - well they learned just fine (ha, ha!! :-))
• My daughter Sammie - she brings laughter to our lives like no one else can and surprisingly she does when we need it most! 
• My son Ryan - he is the best big brother and son I could imagine - he wears Allison's disease daily for her and is her BIGGEST supporter - it amazes me that an 8 year old does this for his "little" sister without thinking or needing it to be about him - he is the most unselfish person I know.
• My husband - his calm way of being has amazed me over the past year - he brings me and our family back to earth daily! I hope one day I can be like him. AND
• My daughter Allison - I know I, or anyone, could do what she does every day - if you want to stay alive you could. But to do it at the age of 6 without complaining - instead on day two of diagnosis she took charge of her life and just started doing it - every day, all the time, forever - it amazes me beyond words or tears could express. She is a hero in every sense of the word.

There are a ton of other people in my life that matter and make a difference to me all the time - to all those that have been there for us over the past year - we could not be more grateful and I say a HUGE thank you for being such great friends!

So who are your everyday heroes? It sure made me feel good to think about all of mine - I have been smiling and remembering the good things from the past year while writing this blog. Take a moment and think about it and I bet you will feel a sense of calm knowing you have these everyday heroes in your life too.

Until there is a cure,

Jennifer

For clarification: There are other definitions of hero that encompass those that should be everyone's heroes - all those people that choose a life of running towards something that everyone else is running away from (police, fire, military and medical personal.) These people will and should be everyone's hero!

It is one of THOSE days.........

Today is one of those days. The day after a low in the middle of the night that scares you out of your pants (even though she was fine – but for about a minute my heart sank in my chest with worry). The day when you are tired and stressed and have a ton of things on your plate and aren’t sure which way to turn next. The day that you just need your mom or dad to come rescue you from your fears and stresses and have to remind yourself that on a day like this Heaven is a little too far way to make you feel better today. Yes, today is one of THOSE days for me.

I started sending out notices and information on Allison’s Tour de Cure Fundraiser and her ONE YEAR since diagnosis event and the memories of the past year made me break down remembering everything we have gone through. The highs, the lows and all the in-between. It has not been an easy year and I think about how many times I had conversations with my mom as I sat on my bed and looked up to Heaven.  She wasn’t here with me on earth but I know that she has been listening and calming me and holding my hand from Heaven the whole year. But on a day like today – one of those days – a hug and a reassuring you are doing it all right, just keep moving forward from her would have made it all better (that’s what mom’s do best!).

Our family has a ton of absolutely wonderful friends and I am the first to admit we lack for little in the friend category. I know our crew out there support us to the ends of the earth and beyond – we are so grateful for everything that they do for us on a daily basis. But at times when the stresses of this disease and our new life gets to me I look around and realize the only family I have close enough to touch are the ones that live in my house with me and although I am in no way ever alone in this at times I still feel alone. I miss having that  feeling of unconditional love and support you get from your parents at those moments in life.

I could have never expected that a year ago my precious daughter would be put to the ultimate test at the age of 6 – to deal with a disease that has no cure – to deal with what she deals with every day with the knowledge that is will never ever go away (we HOPE it will but reality rears its head at times). I, as her parent, also have to deal with that knowledge daily – I cannot take this away for her and that affects me every single day. No one could imagine that it would happen to anyone and it shouldn't! But it did -  I, Allison and her whole family have accepted this fact – and we have moved on and we are a stronger family, we have closer and better friends and we have learned a lot and we are fighting for a cure and will continue to until one is found!

I suppose the point of my blog today is to remind you that you never know. You never know when something is going to hit your family in the face, shake you to your core, tip you upside down and shake you, knock you off your feet – all those things and more.  I am lucky to have family that supports us from afar – my brother’s family is doing a walk for diabetes in Missouri, my cousin just ran a 5K in honor of Allison also in Missouri, my sister sends me encouragement all the time from California, my in-laws are AMAZING (there is no other word for all that they give to us from Virginia and visits to Maryland!) and the rest of my family is always there for us (in Virginia and Ohio and Missouri and California) and they send encouragement all the time. We appreciate the love and support so much from those family members – but having family you can reach out and touch  – literally – on a day like today is so special and I miss that terribly at times (especially my very calm and caring mom!) If you have that in your life remember that is a lucky thing and you should appreciate it because you never know – you never know what lies around that next turn in your life.

NOTE TO ALL MY WONDERFUL FRIENDS AND FAMILY READING THIS BLOG: These words are not for you to be concerned about me, it is a moment in time that will pass. I am certain everyone has their moments in time – I am just expressing my verbally. Before you over react – think about it - you have had a moment like mine in your life for something and you just did not express it out loud – I am just sharing my moment to help others realize life is not always perfect but appreciate what you have and keep moving forward!

Until there is a cure,

Jennifer Holdgreve

It's all in the NUMBERS..........

May 1 is coming soon – why does that date matter? Well it was on May 1, 2011 that Allison was diagnosed with Type 1 diabetes. As I am planning the party/fundraiser to mark the event I can’t help but keep thinking back on the past year and that day in our lives. I know that every single person and family that has been diagnosed with this disease knows their exact date and place and the whole story that goes along with their diagnoses – it is a scary and crazy moment that you just can’t forget.

I will probably write about memories of those moments in my blog more than once in the coming month but as I was sitting at my computer this morning prepping letters and counting the NUMBER of people I am sending the letters to for our event I started thinking how our lives for the past year has centered around “NUMBERS.”

Everything to do with this disease is about NUMBERS - test your blood sugar, measure your carbs and do the ratio of insulin to carbs, sheets of data and information of numbers  - I never realized how much numbers could mean in your life.

The first thing Allison does when she wakes up is finds out what her NUMBER is (referring to her blood glucose), then she counts the carbs for her breakfast (more NUMBERS), then we figure out how much insulin she needs (more NUMBERS). I count out her lunch carbs for her school lunch (more NUMBERS) and send in a list of NUMBERS for her snacks and if there are different times for her to test based on this day’s learning of her disease (more NUMBERS). (We are new to the pump so we are still trying to “learn” the best settings for her for each hour and how all the foods she eats affects her blood sugars!)

Then she is off to school and tests for her NUMBER on a schedule that is about once every hour and a half and verifies the NUMBER of carbs in her lunch and snacks and the NUMBER for her insulin dosage. She tests for her NUMBER when she gets home from school and her after school snack carb NUMBER. Then the dinner routine of testing for her NUMBER, counting the carb NUMBER and then the insulin NUMBER. Before bed we test again for her NUMBER and then we test her at midnight and three am for more NUMBERS. Then the next day starts and we start all over again with NUMBERS! It is crazy how many numbers we have each day! Since the pump our numbers seem more organized because they are all processed electronically and I don’t have to type them into a spreadsheet (awesome!) but I look at these numbers when I download them and it is amazing how many there are!

We never purchased items based on NUMBERS before – now I look at them (not everything but a lot of things.) Carbs make a difference, for instance one of her favorite things is pre-packaged peaches – they come in three varieties now - peaches in water, peaches in juice or peaches in gel and they are all VERY different in carb number and that number affects all of her other NUMBERS so we buy the peaches in juice (she doesn’t care for the water ones although I wish she would eat those instead so many less carbs!!)

We never weighed or measured food before – now we own a fancy scale and measure all the fruits, veggie and other items that can’t be measured and we measure all other items by the ¼,  ½, or 1 cup that goes onto her plate (and her siblings plates – to be fair everyone gets the same amount). More NUMBERS for measuring and counting. Adding in some fiber helps her NUMBERS (both her blood glucose and her Carb NUMBER) so now I look for items that are enriched with fiber. We don’t stay away from items kids love but her NUMBERS don’t always like those things – but she is 7 so we do what we can to make sure she doesn’t feel different than other 7 year olds.

NUMBERS everywhere – that is one of the most significant changes in our life – we all revolve around NUMBERS. Allison can add really well now, Ryan and Sammie know the carb counts in all our favorite things like yogurt, pudding and cookies. Everyone knows how to figure out how many carbs in a serving (and how to figure out what a serving size is – some labels are tricky on that one!) Our whole family is learning to add, divide and multiply all the NUMBERS in our life.

I wish I could say her NUMBERS were under control (I get asked that a lot) but I don’t know what that means really yet. She has some days when we don’t have to worry that her NUMBERS are on target and we just go along – she has days when her NUMBERS are completely out of whack and I have NO IDEA why – and trust me I search for reasons for every high and low.

Besides Allison’s basic well being during her day to day the reason we must do all this work each and every day with NUMBERS is to find that all important NUMBER we get when we see the doctor - Allison’s  A1C NUMBER. This is the NUMBER of all NUMBERS any diabetic will tell you – the one you stress over before you go to the doctor and the one you stress over after you leave-  to either maintain it at its current point or work harder on your daily NUMBERS to make it better.

With all these NUMBERS in our life I find the number that means the most to me is the NUMBER 5. Our family has 5 happy Holdgreve’s that hold hands together with this disease each and every day. We march forward as the Holdgreve 5 each day – helping each other (mostly Allison) deal with this crazy NUMBER’s game.

Until there is a cure,

Jennifer Holdgreve