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