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

Just keep swimming, just keep swimming......

This weekend I saw the film “Finding Nemo” in 3D at the theaters – as I watched the movie again I started realizing how much I felt like Marlin - his life did not end up the way he thought it would at the beginning. This disease that turned us upside down, shook us to our core and ultimately changed everything for me in a short 16 months has become a just another part of our world.

Okay, I say “just” partly in jest – it isn’t "just" a part – all things we do center on the ability for my daughter to function so it is a must not a JUST I suppose. I am definitely the one that takes this on for our family – therefore hoping that the rest of the family, my daughter included, does think it is just a part of our lives. For me it is a “big” part but it is still just a PART of our life – it isn’t our WHOLE life – 16 months ago I would not have thought that.

We are busy people – we were busy before Type 1 diabetes exploded into our lives – and we are still just as busy, actually busier because we added being an advocate for Type 1 diabetes to our to do lists. We decided as a family that we would not let Type 1 diabetes rule our lives we would face it head on. This enabled us to better function in our world and we can help other families, our schools, our community and organizations in understanding and ridding the world of this monster that invaded our lives. I think now we even do all the things we did before with even more gusto – in an effort to prove to the world that Type 1 diabetes is something to pay attention to, but not something that ever has to hold you back from anything. At least I am hoping that is what I am teaching my children by choosing this tactic on this disease.

Am I better or worse off than I was 16 months ago – I don’t know (although I could do with out this disease completely – but that is not a realistic option.) I have had to make some decisions I wish I didn’t have to make – I completely changed the direction of my life to accommodate the needs of the whole. Sometimes like everyone the selfishness of not being where I wanted to be at this point in my life creeps in - but then this weekend the movie made me stop and think about where I actually am now……..I am a completely different person.

I am an advocate for a cause and for others. I was never an advocate before and in looking at where I “should” be that path isn’t the one I ever saw for myself, but here I am waving my Stop Diabetes Hand loudly and fiercely. I realize this is a selfish task - it is for me – but not only for me, it is for all those afflicted with this disease and all those families that one day maybe, just maybe, won’t have to experience what we have had to experience in the past 16 months.

I advocate for children in school with this disease. We are lucky – others are not so lucky. I have become acutely aware of how it is specifically about the SCHOOL, not the overall county administration, the state or the federal laws – it is the school that makes the difference. We have a great school and a great school system but that does not mean I will just sit and be silent. There are still things that can be done and should be done to ensure all children with Type 1 diabetes are treated fairly and equally at school. If you ask my daughter she will say school is her number one issue – she does not want to be perceived as “different” – what child does – so I will always advocate for those that feel this way and do everything I can to have them be safe and just like all the other kids around them.

I advocate for the newly diagnosed. Our family was there 16 short months ago. We felt overwhelmed, frightened, and unsure of everything. At times we could not get our head above the water – the waves of change just kept on coming at us – sometimes like one tidal wave on top of another. We had no choice but to hold onto the life jackets we were thrown to us by those that understood. It was those people and families I met after diagnoses that saved me, literally from drowning in my own self doubt and worry. Those people and families that were now swimming along side of me that made me feel like we could do this. They gave me the life jacket that keeps me afloat. They made it possible to see you can survive Type 1 diabetes and actually thrive with Type 1 diabetes. It amazed me that occasionally they also needed to cling to us – that it was normal to have issues and every day with this disease is different. I want to be that for others now – someone that they can cling to when they have self doubt and worry at 2am and feel the waves taking them under and helping them ride out the waves so we can get back to swimming.

I advocate for people to understand Type 1 diabetes – and to learn the difference between Type 1 and Type 2 diabetes. They are different. Because of the misconceptions my daughter and I have had to deal with people saying things that are inaccurate and make us feel like we have done something wrong. We have not done anything wrong – we could not have prevented this – we could not have done anything different. She cannot help her disease – she will never be able to take a pill and exercise more to rid herself of her disease. She will be forever on insulin therapy which is NOT a cure – it is a medical treatment necessary for her to sustain life on a daily basis.  

I advocate for a CURE for Type 1 diabetes.

We stand up and advocate for and with the American Diabetes Association (ADA) for many reasons. Number one on that list is that it was the Maryland ADA threw us our first life vest. They hosted a meeting in my area to teach me about dealing with Type 1 diabetes at school – as soon as they met me, they took an interest in ensuring our family had what we needed to get above the water and stay afloat. They held us up at a time when we needed it the most and helped us gain a direction to our lives that has forever changed us – they made our whole family the advocates we have become today.

I may not be swimming in the waters I wanted to 16 months ago, the hurricane that carried me to these new waters is over and the waters have calmed (although we have our storms on occasion.) This water is good, it is full of life, wonder, new tributaries and some waterfalls - but it is warm with the love of those that now surround my life. I may not have chosen it or thought I wanted to be here but I am going to do as Dori from Finding Nemo says best – “just keep swimming, just keep swimming” and make these waters our new home and keep advocating for them to get better and better with time.

"Just keep swimming, just keep swimming......."

Until there is a cure,

Jennifer Holdgreve

"I got this Mom".......

This morning I am up getting ready to embark on a ride. A 10 mile bike ride. It isn’t the longest ride I could do, some people are doing 55 or 100 miles. I am doing 10 miles because my daughter Allison will be right by my side on this journey.

This isn’t just a bike ride to us. This isn’t just another fundraiser to us. This is our life now. This is our purpose – OUR families journey in life. To keep going , to keep moving, to prove to diabetes that it doesn’t have us – we have it. This is our opportunity to show the world and stand up and say – we have this disease, we hate this disease and we want it to go AWAY!

This day has been long in coming – way back in September of last year we were asked to be a part of this ride, Allison was asked to be the Youth Ambassador. She was so excited – unknowing of what that meant she jumped at the chance. Since then we have had the privilege of sharing our story and our lives with many people and it has made my daughter a much stronger and more independent person (and she was already pretty independent to begin with!)

Last night she gave a speech to the VIP Party for the ride – she wrote the speech and prepared herself – with no help from us. As we were preparing for the time for the speakers to begin she asked to re-read her speech and she made a slight edit (decided she didn’t like a couple of words.) Then I asked her who she wanted to go up with her when she gave the speech – she looked at me and said “No one – I got this mom.”

“I got this Mom.” Yes she does. She has it – she has strength, courage, spirit and the heart the size of the world – she AMAZED me last night. My 7 year old beautiful daughter is able to do what most adults could not do – she laid out her life to strangers and friends and family – loudly and proudly. She didn’t hesitate, she didn’t stutter, she just spoke HER words to world.

Our journey as a family may have begun a year ago – but last night I saw my daughter’s personal journey with her new life begin – she grew last night as she stood up there and utter the words – “I do not like anything about diabetes” –“ but it has not stopped me from ballet, basketball, soccer, baseball or just being a kid.” She meant it – she still moves on, she still moves forward, she makes a statement every day she doesn’t give in to this disease that infest her body.

She began her independent journey last night – she let go of my hand and went forward – my hand will always be there for her (and she knows that) but I have NEVER been more proud of anything or anyone in my entire life – “I got this Mom” hard words to hear but at the same time every parents dream for their kid to be that amazing!

She ended her speech with “Now let’s RIDE” – so in the words of Allison I shall stop writing and put my hair back, my helmet on and RIDE right along with her – hand outstretched when she needs it – knowing the whole time that she has got this!

Until there is a cure,

Jennifer Holdgreve

Belated Happy Mother's Day?........

Today was that one day every three months I run around the night before, sleep unsoundly with bad dreams and dread. It was our Endo appointment! I am not sure why this day gets me so crazy – OH WAIT I DO KNOW – because it is my daughter’s health and I never know what they will “focus” on this time – numbers, carbs, foods, etc, etc, etc:

·         It could be her numbers are too high or too low and I didn’t adjust like I should have; or

·         You let her eat WHAT? for breakfast – no wonder she was high at 10am; or

·         Her A1C is higher; or

·         She goes in with a high number when they test her; or

·         She goes in with a low number when they test her; or

·         Are there NO vegetables you can get her to eat; or

·         She has gained too much weight; or

·         She has lost too much weight; or

·         All or some of these things combined.

There are so many reasons I feel like a complete failure after leaving these appointments. Today was not really any different. The focus today – breakfast and her “highs” – yes she likes pop tarts. We have a “new” way to eat them now and some new adjustments in her pump – hopefully this will help.  There was also her activity level – not that it isn’t enough – but maybe she is doing TOO much? Really TOO much – why I am feeling guilty that my daughter doesn’t sit in front of a television she plays outside, does ballet and tons of sports all the time. And yes right now she is training for a 10 mile bike ride – and she is experiencing lows about 30 minutes after her crazy exercise.  That is normal (is what I thought). We now know how to adjust her basal rates – apparently I should have been doing that all along – oops! Then they proceed to talk to me for a long while about how to deal with the 10 mile bike ride on Saturday – I thought I had thought of everything  there too – oops!

I will stop for a minute and state I love our Endo, our Certified Diabetic Educator (CDE) and our Dietician, they are great people and always there for me on the other end of my crazy phone calls and emails.  But for some reason at these appointments sitting face to face with them I feel like I am taking some cosmic test about my daughter’s well being and I tend to leave feeling like a complete failure every time.

I KNOW I am not – I am NOT looking for all you out there in my blog world to tell me I am a great mother and doing it all right (so please don’t!) My daughter is happy, healthy, growing well, her blood work is wonderful, she is active and fun to be around – I must be doing something right! I think I feel this way because of the “long term” issues I read so much about with diabetes – I worry that if I let these things go and have too many “oops” that she will have issues and problems and it will be my fault – isn’t it always the mother’s fault?!?

I suppose I should take away that I learned some things today: 1) that not yelling about our appointment being cancelled even though it was confirmed just yesterday and you drove an hour and a half to get there is the best tactic (apparently there was a “mix up” with the scheduler) – you really do catch more flies with honey, and 2) that I, like all the other mother’s I know, am not perfect - BUT I want what is best for my child. I will have some “oops” here and there but the well-being of my children will always be at the forefront of my mind – I won’t “helicopter” them but make sure they stay  - happy, healthy, active and fun to be around (FYI – Allison with a high blood sugar is NO picnic to be around!)

I know mother’s day was two days ago – but I dedicate this blog to all the MOM’s in my world – friends and family – that are just like me – just trying to make the best of what we are given!

Happy Mother’s Day! (Belated!)

Until there is a cure,

Jennifer Holdgreve

Life just keeps getting in the way.......

Life just keeps getting in the way!

This week has been hard as a type 1 parent, harder than usual for me.  Usually my husband and I “tag team” it for everything  – but he has been travelling all week and now I am exhausted. I know I am usually exhausted from life with this disease but this week is more so than usual. My daughter’s blood sugars just aren’t right this week – she is fine and acting fine – so I have to tell myself they must not be that bad – but it also isn’t good and to top it off life this week has been getting in the way of my focus on her numbers! I have three active and engaged kids – not unusual to be running around like a chicken with my head cut off - but highs and lows, little sleep, and missing my partner in this craziness has been hard. Of course I have done it – with grace and ease (ha, ha – just like thinking it looks that way from the outside looking in!!)

The one solace I have this week is that I know I am not alone, and I am not the only parent that has realized that life just keeps getting in the way of managing this disease this week (not that I want others to have to deal with it – but they don’t have a choice either!)

This week I was in touch with a newly diagnosed family. We only chat via email at the moment, but it brings me comfort that they reached out to me and that what they are experiencing is what I feel all the time. Neither of us are alone in our craziness! They are having a real “life keeps getting in the way” issue in that a close friend of theirs is dealing with a very scary health issue and they need to be there for them and also deal with a new reality for their family. I cannot imagine the emotional rollercoaster they are dealing with right now – life just keeps getting in their way in dealing with their diabetes.

Another family I know had a heart stopping moment in the middle of the night this week. All type 1 parents have probably had this moment at least once. That sinking feeling that wakes you from a deep sleep and makes you jump out of bed to rush in (quietly) into your child’s bedroom and you quickly place your hand on their chest to make sure they are still breathing and then you test their blood sugar to understand why you were startled awake. Of course all was fine but you never know. It didn’t matter the mother in this family is also a type 1 diabetic and stress like that can’t be good for her blood sugar or that they have a life and need sleep – life just keeps getting in their way in dealing with their diabetes.

I  was on the phone with a new friend that lives in Colorado that also has a child with type 1 – we met in an online chat room recently! They were trying to work out schedules for spring soccer for their NON-type 1 diabetic child and the necessary childcare for their type 1 child – and it has been really hard for them. Finding that person they can trust, that they feel can be just like them and watch and manage their 7 year old (diagnosed about a year ago) while moving around with their other kids activities. Life just keeps getting in their way in dealing with their diabetes.

I email with a family in the UK – and this week they have been dealing with this disease the EXACT same as us – even across the Atlantic – but their teenage daughter is getting embarrassed by the disease now. She was diagnosed at age 8 and is now 14. She was once okay with showing her disease to the world but now she is a teenage girl that cares about wardrobe, her hair, her makeup, her appearance. Apparently an insulin pump doesn’t really go along with that so well! She is growing up but this disease is not adjusting for her needs – life just keeps getting in their way in dealing with their diabetes.

This week we have had a lot to do from ballet (for two kids on different nights), a school musical performance, scout meetings, school activities, medical appointments, clothing issues, friend issues, fittings for costumes for upcoming recitals, volunteer commitments – and then the regular items for each day that we always do – like meals and baths. Of course at the same time my daughter’s blood sugars have been all over the place this week. High’s and low’s everywhere – this morning when she had a 134 I was so excited I actually jumped up and down – the sleepless night of adjustments worked for her morning number. Of course when she was getting on the bus she was 247 (ugh!)  Life has just been getting in my way this week in dealing with my daughter’s diabetes.

Maybe it is best that life keeps getting in our way – it keeps it “real” for us – we have all the same stresses that parents that don’t live with type 1 on a daily basis have in their lives. We have friends that need us, we have multiple kids with activities, we work, we volunteer, we pray, we do the daily dance of life just like all the other parents we know. But, we are not quite exactly like everyone else, even if life keeps getting in our way we still have to deal with this disease. Maybe one day, when that cure is found, we parents of type 1 kids (and our kids) can just let life into our lives without the added burden of this disease!

This morning I will raise my third cup of coffee to the HOPE for a cure – now on with life –  it just keeps getting in the way……

Until there is a cure,

Jennifer Holdgreve 

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

Technology - a scary but wonderful thing.........

To pump or not to pump – that is the question we asked ourselves back in November before we started down the path of an insulin pump for our daughter Allison. We had time to decide, we had to take a test and pass three classes before the doctor’s office would allow us to get one, so we went forth with the classes and decisions and thought we would decide after we passed everything.

We have now been on the pump with insulin for a month and I ask myself why did I question this path?

Well there were reasons to not pump:

1.       It is technology – SCARY stuff!

2.       It cost more to have an insulin pump – the pump itself is not fully covered by our insurance and the supplies are not fully covered – but needles cost us nothing so our monthly cost increased quite a bit.

3.       It is attached to our daughter day and night – how would she handle that?

4.       It is attached to our daughter at school – how would she handle that with her friends – her diabetes it more noticeable with a pump.

5.       It is technology – SCARY stuff! (Yes that deserves to be said twice in a negative!)

We had our pros too and obviously since we are now on an insulin pump we decided it was worth it at the time. My reflection of the past month reminds me of some crazy things though – we have had some serious highs and a ton more lows than before. One night the pump wasn’t working properly and Allison’s blood sugar was over 600 – our meter doesn’t register over 600 it just SQUEALS at you in a very LOUD AND URGENT listen to me tone! We had to wake Allison up at 3:00am have her pee on a stick and change her site and then Chris and I were up for the rest of the night checking her every hour. It was a long night! We have had more lows than we used to – and the question of keep the pump on, take the pump off, etc, etc, etc and the second guessing creeps in more and more during those times.

As with most things in life there is no perfect way to manage type 1 diabetes with a child – all kids are different and all kids have growth spurts, bad days, active days, lazy days and sicknesses randomly – so managing it sometimes feels like a full time job in itself – add in TECHNOLOGY to that crazy mix and you can get some SCARY stuff running through your head! BUT……

I love it and so does Allison (which is the most important thing!) I will take the 3am site changes or stressing constantly about her numbers (I already did that anyway) or changing her information every day into the technology that scares me any day because it also gives us a much better peace of mind. After all I said how is that possible? It is so full of INFORMATION!

The insulin pump is full of information – the meter is remotely attuned to the pump and can help us and we download everything to a website that shows us charts and graphs and highs and lows and trends – it is AMAZING to actually see what is happening to my daughter. Pare all this information with what she is or has eaten, her activities or issues on any given string of days and you can see how her body is reacting to things so much better.  The first time I saw this it was like a light bulb went off in my head – I have a better understanding – and therefore a better comfort with my daughters disease – what a HUGE and WONDERFUL thing to feel!

So I will continue to be stressed about the technology until I fully understand all it can do (and am certain as soon as I figure this pump out a new and better one will be available – gotta love technology) but I will also appreciate that technology can give me INFORMATION that I never really understood before.  Thank you inventor of the pump – I appreciate you – not as much as the discoverer of insulin but you are right up there!!

Until there is a cure,

Jennifer Holdgreve

Realizing where you belong...............

Have you ever had that moment in your life when you realize you are not where you are suppose to be? I have had that this week. I am out of town at a work meeting. In previous years this was something I enjoyed doing so much I was willing and wanted to sacrifice the time away from my kids – it made me feel fulfilled in my career path and I enjoyed what I did and all those I worked with and around – and planning was my passion so I got all the great things I needed out of the deal.

However, this week as I am away from kids, after pulling back from work to part time consultant only 7 months ago, I realize that this is the last of these that I want to do for a while. I am not in the right place – I do not feel that this is fulfilling a need in my life anymore. I took this extension of my work because I thought it would be hard to go from full time worker to part time worker and full time mom – but that is not the case.

Over the past 7 months I have gotten to see my kids in ways that I didn’t realize existed, I have gotten to volunteer my time for others in need  and for other need organizations and with my church. I have been able to be more engaged and able to focus on my daughter’s disease by starting a support group where there was none, helping raise awareness and just teaching myself everything I can learn about the disease.

Over the past few days while attending my meetings and dealing with everything here I have no other thought than I am glad this is the last time I will be doing this for while – I would rather be back with my family working through our life issues than here (although I still love the people I just do not have the passion for the work anymore) my passion is now completely focused (and maybe too focused at times) on my family and finding a cure for my daughter’s disease.

I have used my time here wisely and reconnected with people and been able to explain type 1 diabetes and my families and daughter’s daily life with them. Their interest, compassion and understanding make it harder to say that I feel my time working with them is complete,  they are all wonderful, salt of the earth people. However, my feelings, head and heart are not here with them  - they are where I need to be right now in my life at home.

I know I will not always have this feeling. I am a worker bee – I want to work and need to work to have sense of purpose and meaning in my life. Since my daughter’s diagnosis the hardest work has been at home trying to figure it all out – our new life. I know a day will come when I feel that all my work at home is lesser and I will want to move back to work outside of the house and I welcome that time and hope I am lucky enough to find the kind of people I have had the privilege of working with here.

   

Until then I am really looking forward to going home tomorrow and doing the work of a mother of three active kids, one of which is a type 1 diabetic. The work of a friend to those that are also having hard times right now in other ways. The work of a dedicated Christian and Catholic to my church. The work of a parent who is lucky enough to have time to help in the classroom (teachers amaze me!) And my favorite work right now, the work of a supporter of other families that are being thrown into the world of type 1 diabetes like we were 10 months  ago - helping to hold their hand while they hold mine and we join together for a common cause.

To all my friends in my work world I will miss you and I know you will be around my life forever because that is the kind of people you are – thank you for all the time and support and fun I have had with you – now I am truly on to the place I belong and am really needed right now – home with my family.

Until there is a cure,

Jennifer

Mommy guilt...........

The past week we have added a new device to our lives – the insulin pump. What has this done for our family? In the immediate it has made life more stressful – but we know in the long term it will make our lives much easier. We are excited, nervous and learning all kinds of new things with it – after the first couple of months we will be more relaxed and settled in to a better routine again and ready to conquer the world.  My blog though is not about the wonders of the pump – I am going to save that for another time – I am writing today about the issue that has taken over my emotions for the past two weeks - mommy guilt. We have had this wonderful new piece of equipment come into our lives and with that all our concentration has been on it and the person wearing it – but I have two other kids – I don’t forget they are there but they sure have taken a back seat to things this week.

For the past week and half I have been so engrossed – pretty much 24/7 with Allison. My mind constantly on her and her issues – last Friday when we had to visit the hospital it became even more evident that my life seemed to center around this one child. Mommy guilt kicked in hard! As I sat in the ER waiting room explaining to my 8 year old son that the ONE thing he has been waiting for months and months to do with his dad was probably going to have to wait I almost broke down in tears. He just sat and stared at me with big eyes and said he understood in the saddest but strongest voice he had.  He and his dad had tickets to opening night of the 3D Star Wars Episode I and he had been so excited all week for it! I couldn’t take the mental anguish of him missing the movie so I went ahead and told Chris to go – take Ryan and go to the movies and have a good time.  I would keep Sammie with me and we would hang out with Allie in the ER until they let us go home (or stay whatever they decided.) So they went – but on the inside I was  wreck I really wanted Chris to stay and hold my hand and I really didn’t want Sammie or Ryan to have to wait at ER with their sister – how horrible of me to feel this way!

All this week  I have been in Allison’s class at school watching her every move and taking notes on how her body is reacting to having insulin constantly put into her body – I have stressed about the highs and the lows and how to deal with them. When we get home it is the same thing – what is Allison’s schedule, we should eat what does Allison want, how do we handle sleeping and showers, we need to maintain what Allison is doing – rarely do the other two kids pop into my head.

This morning it really hit me – I miss my other kids terribly! I baked cookies for Ryan’s Valentine party at school but missed it because I had to be with Allison. I missed Sammie’s party and forgot her lending library book in her bag today because I was so focused on what I needed to get to school for Allison.

As I dropped Sammie off at the neighbors house (the wonderful people helping us this week while I focus on Allison) I gave her a hug and realized that I had not even gotten a chance to see her at school in the  afternoon when she arrived on the bus. I promised her that today I would meet her bus when it arrived after lunch. What did I do – I almost forgot - I came running outside just as her class was about to come inside – she gave me a sad look and then a smile as I hugged her and told her to have a good day – and then she didn’t want to let go of my hand. I almost broke down in tears as I led her to the hallway and I waved goodbye.

I have been picking Ryan up from school every day late because I am at Allison’s school dealing with things and not focusing on the fact he is sitting there waiting on me. He has not complained once because he is an awesome young man – but  today as we walked to the car I asked about his day and he shrugged me off for the first time ever. I felt so sad he did not want to talk to me - he doesn’t feel special at this moment to his mommy. I reminded him that it was Dunkin Donut’s Thursday so he perked up and was even more excited that we actually were going to eat them at the DD not at home (he got to choose his donut this time!) At least I had a card to pull out of my pocket to get him on my side for a moment!

I realize as a parent of a child with special issues (or needs) that sometimes our focus has to be on that child’s well being for the sake of their survival - but how do you balance this with two other kids looking to you for guidance and attention? How do I as a parent take away the focus of the child that medically needs attention at a time when their health and wellbeing is being altered in such a way that everything they do affects them?  I have no idea how to answer these questions! I suspect I am not the only parent that has felt this way at one or more times in their lives!

I wish I had a magic wand that could add time to my day or pause one part of my life so I could focus on another and make sure that all three of my kids were happy, healthy and enjoying life.  I know Ryan and Sammie are happy, healthy and pretty much enjoy their lives but I also know they feel that sometimes they are put to the back of the line because of Allison’s diabetes.  I am going to try to tone down the mommy guilt and try to remember to take the time to have those special moments with them in life that they like everyone needs from their mommy! 

Mommy guilt is the hardest thing to get through and it really tugs at your heart sometimes and this week has been one of my hardest to get through!

Until there is a cure,

Jennifer Holdgreve