Five Years Later..........

Tomorrow we take to the roadways of Easton, Maryland again for the Chesapeake Bay Tour de Cure....this will be the 5th year for us....the 5th year for the bike ride too.....we were there at the start of it.....and hope to see the end of it one day.......

Five years living with type 1 diabetes......I have to struggle in my head to remember what it was like before it entered our lives, when we were carefree and part of my brain and heart were not tied to the constant worry and questions. When it happened it was all at once, sudden, earth shattering and heart breaking.

Five years later - it is no longer earth shattering, we have gotten past the sudden and all at once - it has been enveloped into just being a part of our lives.

Five years later and still, at times, heart breaking - we see Allie struggle sometimes with being what she believes is different, having to pause her life (even for just a moment) to deal with a high or low. Heart breaking to think of her dealing with an incurable disease that requires constant monitoring and evaluation to ensure a long healthy life......forever.... Heart breaking because we know it isn't just her that is affected by this disease.

Five years later - we have met many new friends just like us. Families that were diagnosed before us that became our sounding board and families that were diagnosed after us.....we all have the same fears, the same struggles, the same amazing kids.

Five years later - and our family is stronger than ever. We embraced it as a family, we take from one another's strength. Mother, Father, Sister and Brother we are all here in this together - the bonds are deep and we want nothing more than to find a way through it together. Allie lives with it inside her body but each and every one of us carries it with us because that is what families do for one another.

Five years later and we do not let it stop us......it is a horrible thing, it is the one thing we have all agreed we are allowed to hate. But we don't let it be the reason we don't do everything we want - we still pull on our clothes each day, put on our soccer uniforms, pick up our flutes, study hard, play hard and laugh a lot, we will not let it change us for anything but the better.

Five years later and we are once again putting on our Red Rider Jersey, our Al's Pals T-shirts and heading out on the Ride for Allie's life......we will win this war for everyone but mostly for Allie because she deserves a life free of diabetes.

Until there is a cure...............................

Have you seen my daughter's cape?????

Have you seen my daughter’s cape?

It is an invisible cape, but it is there. It is BLUE just like her beautiful big eyes.

It is visible to me. I see it as she is running around the soccer field. I see it twist around her when she is pirouetting at dance. I see it draped across her chair at school when she is working at her latest project. I see her cape cuddle her at night while she sleeps. I see it wipe her tears when her site change hurts or when she just doesn’t want to prick her finger one more time. I see her cover herself up with her cape when she just wants a moment to herself to not think about diabetes.

It is forever there – a part of who she has become.

Her cape is invisible to most – but not to me – I see her cape. I see her. An amazing young woman who stands up and speaks about living with type 1 diabetes - a disease she would rather hide. I see her. A young woman who strives for perfection in everything she does – because there is one part of her life she feels at times she cannot control. 

I see her – in her cape – smiling through it all.

I am often asked why I advocate so much for my daughter’s disease. The obvious – I want a cure for her and millions just like her. However, the real reason I advocate – is because I want my daughter to know that I SEE it – I see her cape blowing in the wind behind her. I don’t have one, I don’t have a cape – but can be her sidekick (you know the peppy annoying comic relief!) I can stand by her and help her show the world she can fly – even with diabetes.

She may not be a hero to many but she is my HERO, I hope she knows that she is my HERO. Next time you see her take a look behind her – I bet you will see her cape too………

Until there is a cure,

Jennifer

Moments that bring you to happy tears..........

Preparing for school is a fun time – probably more so for parents than the kids – but some kids like Allison cannot wait to get back to school. It is a wonderful time of renewal; new notebooks, pencils and backpacks, new teachers and friends to meet.

Yesterday I sat with a wonderful family that is going through all the excitement of sending their son off for the first time into kindergarten, so exciting for everyone. Except it is for them, as well as for us, probably the most STRESSFUL moment in our lives. We are about to send our child with type 1 diabetes off to school and trust people who in essence are strangers to us and we trust that they are not only going to educate our child but also ensure they are safe at school.

I became an Advanced School Volunteer Advocate for the Safe at School Program by the American Diabetes Association to help others with this each year. Help them know their rights and get prepared for the regular days and for the unforeseen days we hope will never happen for their child while at school. We have to think of all the “what ifs” in life for our child at school. It can be overwhelming to say the least!

It involves binders of information, supplies in multiple locations in the school and us parents becoming the teacher to the school personnel about our child. I started this morning to work on my binders and decided to start on the cover where I put beautiful pictures of my daughter. This quest for pictures of her led me down an unexpected path this year – a path to happy tears - what I found was the amazing support and friends we have found over the past years of her having this disease.

I came across pictures of my daughter really LIVING life. She is able to do this because of all those around us. It amazed me – when I am the most stressed about the terrible “what ifs” that must be a part of my thoughts – I have realized again our family is so blessed. I wish there were words to describe the feelings I have at this moment. As a mom of a child with a hidden disease, seeing frozen in awesome pictures, that in my little world there are an amazing number of people that hold onto my daughters hand, my hand, my families hands and learn what it takes to allow us all to LIVE life despite diabetes - it is the most amazing feeling.

As I, and other families with children with type 1 diabetes, get ready for the next few weeks of stress and blood sugar issues, talking and teaching all those new around us about type 1 diabetes, I thank all that are there for us. Those in our lives that let us LIVE and have fun and allow us to remember that it isn't about the "what ifs" it is about living now and allowing us to continue to have smiles in pictures and the precious memories that will last forever.

THANK YOU.

Until there is a cure,

Jennifer

No matter what we all still need our moms, even from heaven......

No matter how old you are – you always need your Mom. I ache a little today because I am celebrating that my mom was born today but she is not here to celebrate with me any longer. Her reach from heaven is only so far – and enjoying a piece of cheesecake with me is not something she can do from that far today!

I think about her today and what she brought to my family. I hope that I am teaching my kids the same need for kindness and caring and generosity that my mom showed the world. I see her every day in all of my children in different ways. Allison’s heart is the kindest heart I know – just like my mom’s. Ryan’s need to help others – to volunteer and make the world a better place – just like my mom! Sammie’s fun loving innocent nature and her ability to bring laughter to others (and love for M&M’s and sweets) – just like my mom!

But today I ache more because if she was still within our reach here on earth I think how different I would have dealt with Allison’s diabetes diagnosis. She was a nurse and had this way of calming me and helping me understand the seriousness or not seriousness of all things medical. I did not realize until she was gone how much I relied on her for these things.

When Allison was diagnosed 2 ½ years ago I sat alone in the Pediatric ICU next to Allison’s bed staring at my beautiful daughter as she slept and prayed to my mom for the strength to be strong for Allison in the coming months and years.  I did not ask God for the strength – I asked my mom. She had already passed onto heaven and I knew that if I could garner just half of the strength she had I would be able to be what my daughter needed to deal with her new world in the coming months and years.

My mom had a lot of “unfair” things thrown at her through her life – and there are moments when I sit with my daughter crying in my arms because she different and her disease is overwhelming her and I think what an unfair world. Then I think about my mom – she kept going, she did not let “unfair” things break her – she bent with the wind and found her way back.

I still pray – to both God and my mom when it comes to issues with Allison’s diabetes. On days when it is all I can take or I see my daughter breaking down – I pray for a little more of my mom’s strength. There are times when I really believe I can feel her holding my hand or feel her hugging me again – giving me the strength to carry on and get up and move forward.

My mom’s kindness, love, compassion and laughter brought amazing things to our world while she was here – and her legacy continues in my children – thank you for all you gave to me Mom – I still miss you every day!

Happy Birthday Mom!

Until there is a cure,

Jennifer

My day of pure inspiration...........

The spirit that encompasses today – our ride in the Chesapeake Bay Tour de Cure – moves me beyond words could ever express.

We all have so many emotions in our lives – this one day showcases every single emotion I think I could ever have – from great sadness that we are here participating because my daughter has this disease to the overwhelming spirit of the ultimate pride and pure happiness I have in human spirit to overcome something horrible (like diabetes) together.

I found myself last year on the verge of tears all day long –never not once for the sadness of being put in this place in our lives - but for the overwhelming spirit of all those that were present at the event.

Watching my daughter pedal her bike – stopping on occasion for some Gatorade and blood sugar check. Never complaining, smiling the whole way and enjoying every minute!

Seeing my son run his Cub Scouts for a Cure rest stop with such enthusiasm and support for every single rider that came through - knowing he was NEVER thinking of himself – truly unselfish motivation from a 10 year old boy!

The other riders as they passed my daughter shout “go Red Rider!”

Seeing the other Red Riders and being able to shout “go Red Rider!”

The volunteers that were there to support and talk to every person that crossed their path and them thanking us for riding – when they were giving their time to support us.

The sponsors that make this event possible – from the food to the “goody” bags of things that a diabetic might need!

The staff of the Maryland ADA – unwavering advocates that made the day full of FUN and inspiration for everyone.

And all of the friends that came out to see us finish the ride and hear Allison give her speech about her life.

It is another year – and today will be no different – I know I will shed tears of joy today. We will all be there again supporting and lifting each other up - realizing that we are not alone ever . This one day today will last a whole year for us – it will empower us to keep advocating for more research and education and will help us manage the many ups and downs we have in our lives.

So bring on the emotions and tears (I will remember Kleenex this year!) and Let’s Ride!

Until there is a cure,
Jennifer

Having JUST diabetes in our lives.......

Some days I feel like diabetes is all I talk about or all I think about. I know that diabetes is not all my life is about – we have very full lives despite this stupid disease, but since God picked us to deal with it – we do deal with it – every second of every day. In reality we don’t think about it 24/7/365 but it is always there and will never go away unless we do something to change that fact. This is why we do what we do- for our daughter to one day not have to think about it 24/7/365 – for her life – literally.

Recently I was faced with a question that really affected me – all the way down to my core. Why do I bring so much attention to my daughter - she JUST has diabetes. Yup – that hurt – on many levels that hurt  me. Was  I expressing too much to the world, am I putting my daughter in a place she should not be in, am I making to big a deal about having diabetes in our family?  The answer to myself was a big fat NO. So I decided to respond to this person on social media and the response I got from my friends and family showed me that I was not doing anything wrong in my path. I was teaching, I was helping, I was fighting the good fight.

The responses did make me think about how and why I decided two years ago to tackle our lives in the open. I realize everyone does it differently and I never ask anyone else to talk about how they deal with this stupid disease, it is a very personal struggle. If others want or need to share I will be the first one to listen but I have never expected others to be as open as I am, after all my husband even tackles it differently.  My response to the question of why I put my daughter’s disease out there was because if I can help another family not feel alone, if I can help someone not say something stupid to someone dealing with this disease, if I can bring more money towards a cure or if I can help someone save my child’s life in an emergency – I have succeeded.

However, after reading all the responses from my friends and family, I learned that I did not answer the question fully. I showcase all our families UPS and DOWNS because our family needs help. We need support. We need to know that  all of our friends and family – near and far – are there for us. I want them to see and hear how they can, and have, helped our family. That is just basic human nature – to need and be needed. The responses I received made it clear to me that it is not about my need to showcase our lives but to get the much needed support that all humans need when placed into a situation in their lives that they just cannot handle alone. I am not capable of maintaining my sanity on a daily basis with diabetes in our lives without my friends and family.

I also want to help every family diagnosed with this disease – help them realize they can do it – it is hard (I never sugar coat it) but it is doable. If the Holdgreve’s can do it anyone can! But I can only be honest with other families about our ability to handle this disease – because we have help, we have support. We are so lucky to have a network of support near and wide across the entire world. I have definitely learned that every family deals with the diagnosis of this disease (and other diseases) in their own way. My way is to continue our fight for a cure and to help others that are placed onto our path and I am going to do this in the open for all to see. Educating, advocating and keeping the support of my friends and family. Maybe I will teach enough people to not ask a parent with a child with diabetes why they make such a big deal about their kid – it is JUST diabetes.

I have learned from this – I need my village – and I am glad to have one that is always there for me – even if it is JUST diabetes.

Until there is a cure,

Jennifer

P.S. – The person that posed this question to me never responded outwardly but they did send me an apology for not realizing more about the disease – after I sent them a TON of information on having JUST diabetes. So another person educated!

Our world wore blue, and ribbons, and t-shirts and their support for us......

Yesterday was Allison’s 2^nd Diaversary. We spent the day trying to make Allison feel special – instead of different. We succeeded. Why? Because of people that have crossed our path - some recently and some many, many years ago.

I asked a simple thing – wear your support for Allison on May 1. I was amazed, stunned and in awe of the numbers of people that did just that. Yesterday I realized that there are people in our lives – some we talk to often and some we only catch up with only now and then – that are with us in this fight for a better life for Allison.

I thought yesterday was going to be hard for me. I thought I would be full of tears thinking of the past – what it was like for us two years ago, all we lost in that moment, missing our “old” life.  Our world proved me wrong. I had tears in my eyes frequently yesterday – but they were tears of from my heart not being able to contain how much LOVE there is in our  world.

From the sea of blue worn in honor of Allison at her school – to the picture of large groups gathered from old and new groups of friends.  There was picture after picture of people wearing their support and many notes from those that did not have access to a camera that they were indeed wearing their support of Allison and it went on all day!

May 1 isn’t an official National or World Diabetes Awareness day – but it is OUR Diabetes Awareness Day. It was on May 1 that we became aware of this disease and all the misconceptions and misinformation there is about it. May 1 is Holdgreve Diabetes Awareness Day and on this May 1 I was shown that over the past two years we have made others aware of what it is and aware of the need for a cure and better management of this silent disease.

I have more inspiration now – I won't be taking it purely from my amazing daughter – it comes from every single person that took a moment out of their lives yesterday and thought about her and others that they know that suffer from type  1 diabetes . I am inspired to keep moving forward and focus on the future and only learn from the past. 

Yesterday wasn't about about raising money (that is needed and important – no research is free) but about supporting each other in whatever way you can – and wearing blue, a ribbon, a t-shirt supporting diabetes awareness – and telling the world and Allison you did it – that was priceless.

Until there is a cure,

Jennifer

Here are only two of the MANY photos from May 1--

The roads we choose..........

I think most of us at certain moments find ourselves looking back in time at how we have arrived at certain points in our lives. In looking back we see the roads we chose or possibly the roads we were given without choice. I am at this moment looking back - I am not at all where I thought I would be but I couldn't imagine being anywhere else.

I made choices in my past that lead me here - I moved to D.C. for someone else but I found my soul mate. I moved to the Eastern Shore of Maryland to raise a family and found a community of people that I cherish. Having my mom move in with us upon her retirement - an idea of my husbands - gave me the last year's of my mom's life - so many moments a that will always be cherished in my mind. Changing my career path for one of less travel allowing me to be at home and more involved with my kids activities allowed me a feeling of fulfillment. All these were decisions I made on my own - a road I choose each time.

But, what has changed me the most is the road that I did not choose - the road we were forced down on May 1 of 2011. The day in my life that altered everything. EVERYTHING. That day when my daughter was diagnosed with type 1 diabetes - my career, my friends, my family life, every part of who I was changed. I no longer focused on where I was going, where I wanted to be in my life. I started focusing on what I could do to help. How I could help my daughter deal day in and day out with this disease, help others that were forced down the same road as us grasp and understand the new world around them, help raise awareness to everyone I knew and met, educate the world about what it is like to live 24/7 with type 1 diabetes, to motivate others to get involved, become an advocate for the cause and raise money for continued research for a cure and better management.

This road changed the person I was in so many ways - I no longer mind talking to groups and crowds of people, I don't mind asking a million questions of our health care professionals, I want to teach the world about this disease and educate the uninformed and I no longer mind begging people for money.

I see my children differently - every moment is a gift.

I see my husband differently - his strength and humor get everyone through the hard days.

I see my life differently - I no longer care about a career or money or those things that motivated me just two short years ago.

I would give anything to not be on this road, to not make my daughter have to go through her daily struggles with diabetes, but at the same time the people I have met along it, the person I have become, I would not want to loose. Each day I am humbled by what I still don't know about this new world of ours and amazed at the young men and women that deal with this disease are able accomplish in their lives despite it.

I cannot change this road - I cannot choose another at this moment - so I will continue down this road not chosen and hope it continues to make me stronger, more humble and that I can give back to the world as I wait for my next opportunity to choose a road. Maybe our next road will be the one with a CURE and I will diverge back to where I was in May of 2011- here's hoping for that!!!

Until there is a cure,
Jennifer

Parenting is not an easy job....

How do you feel as a parent right now?

Today, I feel horrible. Not because I really think I am a bad mother – I actually think I am usually pretty good at things when it comes to my kids. They seem to be well behaved and well mannered everywhere outside of our house. They work hard at school, play well with others and are generally happy kids. But this morning was really hard for me to be the “good mom.”

Allison’s insulin site needs to be changed before I drive into D.C. this afternoon for an event I am looking forward to attending. She does not have enough insulin to make it until I pick her up this evening and no one else is trained to change her site. So I wanted to change it before we left home this morning. That did not happen – Allison refused.

She just was not mentally able to allow me to do it this morning. I discussed with her that the only time I could do it was now or during her recess time at school. Why? Because I was being selfish and thinking of the million and one things I have on my to do list and did not want to give up the 30 minutes I carved out in the day to drive to her school and change it when she wanted. I was so frustrated with her that I tried to make her think she was going to have to miss her favorite part of school – recess with her friends. I wanted to yell and scream that I did not have time to have this discussion or argument.

With tears in her eyes she looked up at me and said she just could not do it right now and would rather miss recess. Seeing your daughter in tears will change your mind set in a heartbeat – and it did.

Allison is amazing, day in and day out with little complaint about checking her blood sugar and changing her site and the one time she just wants me to do it later in the day - I forget I have no idea what it is like to be her. To carry that around with her all the time – this disease that has robbed her of so much.

In an effort to be a better mom – I am changing my schedule and am going to scarf down a fast food drive through lunch on my way to her school BEFORE her recess starts so she cannot be robbed of one thing she loves so much – time with her friends – and maybe she will forgive her mom for not being perfect all the time!

Until there is a cure,

Jennifer

It is your choice to make.......

January 9, 2013

Today there was a post by a friend on Facebook that is really hurting a little bit but ringing true to me right now.

Here is the quote:

“Everything you do is based on choices you make.  It’s not your parents, your relationships, your job, the economy, the weather, an argument or your age that is to blame. You and only you are responsible for every decision and choice you make.”

Over the past year and a half I have blamed diabetes for EVERYTHING in my life. It completely changed my life and I have lived for the past year and half blaming it and making it the thing that is running my life and therefore making all my life choices for me.

I made decisions such as limiting my work load and doing things close to home (therefore forfeiting a well paying job that gave me purpose) because I thought it was I needed to do because of diabetes. It was my choice. I can say I had the BEST summer of my life last year though with my kids but what did I give up with that choice.

The quote is right. It wasn’t and isn’t diabetes that has me where I am today. It is me. I currently may not like a lot of the aspects of my situation, but it is in my power to change what I don’t like. Yes I am working on making those changes – so don’t be surprised one day when you hear what I am doing next!

I have unfortunately been blaming diabetes too long now for my choices. I am going to stop wondering where I would be now if diabetes hadn’t crashed my party. It is a part of our lives and one I have to accept – that too is a choice I have to make.

So here you go – my choice is to not let diabetes run my life – or my daughter’s life – any longer. I will do everything in my power to be a part of the cure and education of others, I will help my daughter manage it day and day out (because I want my daughter to live) BUT it will not make decisions for me anymore. I will not forfeit my life or happiness for this horrible monster any longer.

Note to my friends: Remind me of this the next time I am not motivating myself in the right direction!

Until there is a cure,

Jennifer Holdgreve

The World Shares in Diabetes Awareness...

Tomorrow - Nov. 14 is World Diabetes Day!

What should you do - get your BLUE ON!! Wear some blue in honor of this day and the awareness of the worldwide epidemic that is Diabetes.

In 2011 Diabetes was the cause of 4.6 million lives worldwide. This isn't just a growing problem in the United States - and in some countries a diagnosis with diabetes can be lead to death very quickly due to the lack of needed medicines and the basic understanding of the symptoms.

So tomorrow - bring out some blue and think or learn more about diabetes and all those around the world that need a cure!

Until there is a cure,
Jennifer

A blue candle is lit - a sad day for a type 1 family......

I couldn't write a blog yesterday because I was too busy trying to forget the reality of the story I read about Joel Cannable - a young man that lost his war with diabetes a few days ago. (Yes I firmly believe young because he is my age!) His passing of a diabetic seizure is a tragedy beyond words for his family and one that every parent (no matter the age of their type 1 child) has in the back of their heads pretty much at all times - some people wonder why I get up and check Allison's blood sugars at midnight and 3am - this is why.

My prayers and thoughts are with the family and friends of this bright young light that has left our world. Here is the story the news reported on Joel Cannable.

Take a moment during this Diabetes Awareness Month and remember a person that did not hide his diabetes, managed it well but still lost the war. Let us all be aware of what is at stake and why we need to be informed, educated and understand the dire consequences that can come on suddenly and sometimes without warning with type 1 diabetes - both the lows and the highs can be tragic.

In honor of Joel Cannable - I will light a blue candle - please join me in celebrating his life and praying for his family and lighting a blue candle in his memory.

 



Until there is a cure,
Jennifer

Ryan, someone you can count on.......

As I was packing for our vacation last week I was aware of my son's wishes to wear a diabetes support shirt every day, but I also knew we would be at Disney World with his cousin and thought that maybe he would want to have different options available to him so I packed some shirts that were not diabetes related for him too.  Just in case he wanted to wear something else for a day.

So all week he has gotten into his drawer and picked out his own clothes for the day - without a word from me - and all week he has selected a diabetes support shirt. As we were walking into Animal Kingdom yesteday I mentioned it to Chris that I was surprised, he had some fun Disney shirts and his favorite shirt to wear - but still he chooses the diabetes shirt. Chris said what is so true of Ryan - when he gets into a cause he puts all of himself into it - how he does everything - you can always count on Ryan.

He is right, everything he chooses to do he does with his whole mind and heart.

When he is on the soccer field he is so focused and works and runs at 100% the whole time - he isn't the star player - but you can always count on Ryan to be there and put himself wholy into the game.

He may not be the best student in class - but you can always count on Ryan to be there and putting himself out there to do his best and put his whole mind and heart into all his work.

He is a Redskins fan - he puts his whole heart and mind into each game - even though they are hard to be a fan of all the time - but you can always count on Ryan to be there cheering them forward.

He is a Scout - and all that means. He gives his heart, mind and soul to being a good citizen, being a good person, and doing his best. He loves being a scout, and you can always count on Ryan to do the right thing just like a Scout.

I realize after seeing him this week that diabetes awareness isn't just something he does - it is something that matters to him - by choice. Allison has someone in her life, that although they fight all the time, well they are siblings after all, she has someone that she can count on to be there. When it comes down to it, he supports her and her need for a cure and for people to be aware of her disease, she can count on Ryan.

Until there is a cure,
Jennifer

What does it feel like.......

I wonder...what does it feel like to have your blood sugar go from 54 to 380 in less than 30 minutes? What does it feel like to go from 500 to 42 in less than an hour? What does it feel like to stay at 380 for three hours in a row? What does it feel like to stay in the 50's for a long time?

I sat and watched my daughter sleep this morning wondering what her "number" was. We had an issue with running high last night - and without the pump that meant getting out a needle and poking her in the arm at 3am - not my favorite thing. She didn't even know I did it! Amazing to be able to sleep through someone pricking your finger every hour and getting a shot in your arm! I wonder what that feels like - to get "used to" being poked and prodded by your parents while you sleep?

What does it feel like to have type 1 diabetes? I probably won't ever know. I won't be able to walk in my daughter's shoes or say I totally understand what she feels in regards to diabetes. I can wear a pump, I can prick my fingers and give myself make believe shots all I want but it won't tell me what she feels. I wish I could, I wish I could understand better the angry that comes with the high, the depression that comes with the low, the craziness that comes with it all!

When my daughter experiences love for the first time, I know that feeling. When my daughter experiences losing a friend for the first time, I know that feeling. When my daughter succeeds and fails at school, I know that feeling. When my daughter wins and loses in life, I know that feeling. When my daughter has her first kiss, has her first date, has her first driving lesson, finds her life partner, gets married, has her first child, gets a job she loves, gets a job she hates - I know all those feelings. I can help her with all those things and help her along the path of understanding those feelings.

But diabetes, I don't know that feeling. My daughter takes it all in stride, but as we continue through this diabetes awareness month, I have realized that my awareness is simply one of only WHAT diabetes is not a what it "feels" like to have it living inside your body. As I watched her sleep and her chest rise and fall I prayed for her to continue to have that strength of character she carries with her in regard to her diabetes, and to not let diabetes ever win in her life. I hope she knows that although I don't know the feeling from the "inside" I will forever be fighting for her and fighting against the beast inside of her and will do everything I can from this side of diabetes to make sure she gets to experience all those things in life that are actually worth feeling!

Until there is a cure,
Jennifer

Magic Was in the Air......

I was nervous starting out the day yesterday without Allison's pump - we have gotten so used to it's ease of use and calculations for us that I wasn't sure what was in store for us as we embarked on the ever crazy world of a busy theme park! But, magic was in the air!

Except for a couple crazy lows from excitement we had numbers all within range yesterday - truly a magically day with diabetes. Not only that, my daughter again taught me something about her "vacation plans" and diabetes. I thought we were going to have be "sneaky" and "silent" about it all day - trying to find remote places to check blood sugars and inject the insulin! NOPE that didn't have anything to do with her vacation from her pump - it was just that from her pump - not from people knowing about diabetes.

Magic was in the air!

When we sat down to eat lunch she just let us do it right there at the table we were able to just whip everything out there - check blood sugar, draw up the insulin and stick it in her arm - she didn't care, didn't flinch, it didn't bother her.

Magic was in the air!

As we were sitting waiting for the 3pm parade I looked at her and thought she seemed "low" so I asked if she would check her blood sugar. Not a private place around - she just grabbed the meter, opened it up and proceeded. The adults around me gave me a second and one a third look - the kids that surrounded her on the ground all gathered around to "see" what she was doing. She explained it to them - and the adults overheard. One of them leaned over to me and ask "how old is she?" My first thought was one of negativity - he was about to say something incorrect or stupid to me about diabetes, that he didn't know the difference between type 1 and type 2 - I was wrong, again. I told him she was 8 - diagnosed at 6, a year and a half ago. His comment back to me was "She is amazing to handle all those kids and us adults watching her and she explained it so well to those little kids - she has a real handle on her life - good for you and her!"

Magic was in the air!

Then they invited all the kids to come play on main street while we waited for the parade. If Allison had not removed her pump from her side she would never had "jumped" at this opportunity - she loves to jump rope but complains of the bother of her pump "jumping around too much" while she does it - she leaped up and ran over and got in line - and jumped her heart out!

Magic was in the air!

Later we decided to get some ice cream! As we sat down with our treat and prepared to watch a show at Cinderella's Castle (the most magically place of all) - I had to check her and give her a needle with insulin. Honestly I didn't want to do it sitting on the ground surrounded by tons of others but Allison didn't care so we did. As I drew up the needle - the looks from people around me came on strong! As I prepped her skin she said - no wait I'll do it! Talk about stares! As my 8 year old daughter inserted her needle of insulin into the back of her own arm, I got a pat on my back. Allison gave me the needle I secured it and looked at the person sitting next to me that had patted my back. "WOW - I am a nurse and work with training patients to give themselves shots - I can't think of half of them being able to do what she just did - how old is she? She really is just amazing!"

Magic was in the air!

I learned magic isn't about me being able to make a quarter disappear (although my kids love it when I do that) - it is about innocence, happiness and trusting that those around aren't always going to be negative. So maybe we didn't get the magic of diabetes being cured but we did get the magic of it being understood and no one we encountered was afraid of it or us when we showed it to the world - that did make it a MAGICAL day!

Magic does exist and maybe fairy tale dreams and wishes can come true - so I will continue to wish upon a star that one day a cure will come......

Until there is a cure,
Jennifer

(Oh and meeting, MICKEY, MINNIE, DAISY and seeing ALL the PRINCESS - that definitely added to the MAGIC of the day!)

A vacation for everyone - even Allison's Pump.....

Yesterday we spent the sunny Florida day at the pool at our hotel - we have a whole 7 days here so thought we would spread out the time with some fun in the sun poolside and then some at the happiest place on earth (I mean a person can only take so much happiness right?) Anyway, of course while swimming Allison's site comes out. No big surprise, we were actually expecting it. It was the third day of this site (was going to be changed anyway) and she is a water bug so sites get water logged easily when she is swimming! We tested her and she was a whopping 51 so we didn't worry about replacing the site right away either - she would come up and then probably drop down again with all her activity in the pool anyway!

So we wait and slowly she starts to rise during the day - missing that all important basal going in her body! It finally gets to the point where we need to get her back attached to her pump. We get it prepped and primed and ready for insertion and Allison breaks down. Now, on occasion she does this, especially when her blood sugar is a little high, so we were dealing with it like always - but then she says something different - it isn't fair I want a vacation - this is my vacation too.

Hum....what?? A vacation from diabetes? Well she knows that isn't possible.

We wait for her explanation - it is possible to have a vacation from her pump - and that is what she wanted. On her vacation - this week she wants to NOT be attached to something 24/7. She wants to go back to "shots" or as in the diabetes world we call them MDI (multiple daily injections.) WOW was I surprised! She would rather have at least 4 shots a day (one which she used to hate more than anything at night in the bum) than wear her insulin pump that gives her freedom to eat at random?

Yes, she would. She wants to swim with freedom in the pool without a site on her and having to take her pump on and off. She wants to get on all the rides at Disney without having to figure out if it is one that her pump needs to be removed. She wants to sleep at night without rolling over on her pump or twisting up her chord on her arm, leg or where it lands that night. She wants to run around without something dragging down her pocket or the waist line of her clothes. She wants to wear her princess dress without a pair of shorts under it to support her pump.

Now, I get it! My idea of a vacation is a little peace and quite and watching my kids have tons of fun and smiling. Her idea of a vacation is one where she can have fun and not be "attached" to something that reminds her of her disease 24/7.

Until that moment I thought the insulin pump was the best thing in the world. But watching the tears run down her face and listening to her I now see it from her eyes. She does like it better than MDI's all the time - but vacation is a vacation - for everyone! This is her time, her moment, to live differently for a week. To let her mom and dad do all the calculations and draw up the insulin and give her a shot in the arm and then her not think about it again and forget, maybe for a moment, that there isn't this silent disease working inside her body. There won't be a constant reminder attached to her body all time.

So a vacation for everyone it is - no pump, a little peace and getting to watch all my kids have tons of fun!

Today we are headed to the most magical place on earth - unfortunately there isn't enough magic there to rid Allison of her diabetes - but maybe just enough to have her forget she has it for today!

Until there is a cure,
Jennifer

Wearing diabetes on my wrist.......

See This....

 

 

 

I looked down yesterday and realized that I have been wearing this for a year. Last year we got these braclets at a meeting with the American Diabetes Association and my daughter Allison asked if I would be willing to wear it for a whole year. I of course took on that challenge and starting Nov. 1, 2011 - the start of Diabetes Awareness Month last year - I put this on my wrist.

 

I have worn it without removal for an entire year, bathing, swimming, sleeping, meetings - everywhere. At first I  noticed it and it bothered me a bit but then it became a part of me. A part of who I had become, a part of my attire. I wore it with pride and knowing that although I could not experience the daily things my daughter deals with I could at least have on me at all times a reminder of my daughter and her struggles.

 

Unlike this braclet Allison cannot take off diabetes for a while, she cannot remove it from her body because it doesn't go with the business outifit or if it bothers her when she sleeps. So I will continue to wear this braclet until it falls off my wrist - and then I will get another one - and I will wear that one - to always be a reminder that there is something greater than me out there - my daughter who deals with the challenges diabetes gives her daily.

 

You don't have to wear a braclet with me - but this month if you want wear a ribbon and show your support to Allison and all those others out there with diabetes that you are going to be with them and help them along the way and find a way to STOP DIABETES in their lifes.

 

Until there is a cure,

Jennifer

Vacations with diabetes..........

What lies between our family and our Disney Vacation – packing the car and school letting out! I know everyone loves a vacation – just like us – and we are very excited. I wanted to take this moment to show you the extra steps we are taking because we have to be prepared for anything along the road – especially a diabetes related issue.

We like you have to pack clothes, toiletries and shoes but we also have to pack diabetes supplies – and then backups for our diabetes supplies and to be on the “safe side” backups to our backups.  This is a picture of the supplies before I split them into two separate bags. Yes two bags – just in case something happens to one we have another!

Just like everyone takes time to have kits available if your car breaks down or you if you know a storm is coming you get supplies. We do this for our trip with diabetes. We are hoping that it all goes smoothly and there are no issues, but you MUST be prepared for that “what if” at all times when you are travelling with diabetes.

As you think about your trips and all you do,  take a moment and think about what families with diabetes have to do on top of all of all of that. We aren't complaining or nervous about travelling with diabetes, we have done it in the past and will do it many more times in the future. I am just taking this moment during  this month, diabetes awareness month, so maybe next time you meet a family that has type 1 diabetes along the roads of your travels you will remember, they are there to have fun, but they are also being a little more cautious, a little more watchful and are probably very prepared. You will know that they aren't crazy, hovering, helicopter parents, but because like you in a storm they don’t want the worst to happen, but if it does they will have all they need and know what to do to help their child.

Until there is a cure,

Jennifer Holdgreve

Recognizing my Type 1 Hero Roxanne (Who is yours?)................

November 1, 2012

Today is Type 1 Day – a day we recognize all those that we know that have Type 1 Diabetes and all the challenges and issues they face every minute of every day carrying around this disease.

Those that I know with type 1 are the strongest, bravest, energizing and engaging people in my life. My daughter is no exception to this (but you can read many blogs about my daughter and how wonderful and amazed I am at her.) Today I celebrate another friend of mine, that although she is like me in many ways, she has a son that was diagnosed with type 1 diabetes, a son that does not have type 1 diabetes, a supportive husband and is a naturally happy person – so much like me – BUT she also has type 1 diabetes.

She grew up with it from a young age. She experienced it in a different time when medicines and mechanics were not as sophisticated as they are today. She went through her teenage years with this disease, she went through dating and marriage and the birth of two wonderful children with this disease.

She has experienced “highs” and “lows” I will never know – but she still carries herself with great dignity and pride. She is teaching her sons that life isn’t about having diabetes – it is about living life to the fullest no matter what lies in your path.

In the past year that I have known her she has helped carry the troubles of other parents that are dealing with the stresses of this disease with their children without regard to the fact that she actually knows what it is like to be that child.

Since meeting her one thing I have prayed for, almost as much as I have prayed for a cure, is that my daughter will look at this beautiful amazing young woman and realize that life doesn't stop, that you are capable of living a fun and fulfilling life even with diabetes.

Thank you Roxanne for being an inspiration to me and to the countless others that have, and will, cross your path – you are a true Type 1 Hero – today I recognize you for all you do and all you accomplish as a person thriving with this disease!

Until there is a cure,

Jennifer

DIABETES AWARENESS MONTH (NOVEMBER)

October 31, 2012

Tomorrow is T-1Day – and the start of Diabetes Awareness Month. November 1st and the whole month, mean a lot to our family. This is our chance to make sure all our friends and family and all their friends and family know and learn about diabetes – specifically Type 1 diabetes and the need for a cure!

The last year and a half have been the most challenging of my life. I have dealt with a lot in my life, but nothing is harder than seeing and realizing the challenges your child has to face every day, every hour, every minute with a hidden disease that you cannot make go away.  Most people that know me – know I am not a “downer” kind of person but I have definitely had my moments this year (read some of my blogs.) I will not lie about it – I will not pretend that our life is easy and all is great – that isn't fair to others that also deal with this every minute of every day – pretending life is normal is not something I can do. Normal after all is just a setting on a washing machine, not in life.

But I will keep smiling, keep educating, keep a watchful eye on my daughter and never let diabetes “win” this war with our family. It might win a few battles and scar us along the way but it will NEVER win the war with us – and we hope and pray it doesn't win the war with anyone.

Take some time this November to educate yourself about diabetes – all types. Learn the differences so you don’t say something stupid to me that doesn't relate to our family and type 1 diabetes and learn the symptoms for yourself and others of type 2- catching it early can help so much!

I will blog each day in November (just like last year) – some of it will be while on the road and on our family vacation at Disney as well as our overall journey with this disease! My son Ryan will again be wearing a diabetes support shirt every day this month (his way of literally wearing it on his sleeve for his sister) and our whole family will be wearing the grey ribbon with the “dot of red” each and every day to help the world understand.

Join us and teach the world that we can eliminate this monster from my daughter’s (and so many other’s) lives!

Need a ribbon – let me know – I will do my best to get you one!!

Until there is a cure,

Jennifer Holdgreve