Heart Ache

I dont know where else to go with this news, so I thought I would post it for all the world - or absolutely no one - to read. My husband - 43 and living with Type 1 diabetes since age 11 - had a heart attack last week. We sat stunned and frightened by the treatment senarios, all the while not quite believeing this was for real. But it is, and I am not sure how to process the feelings I have. We thought it was the flu for god sake - now were talking heart attack? I am scared and angry and full of resentment for diabetes in general. I sat the whole time thinking about his future, our future, our childrens' futures. They both have T1 diabetes too. Will I someday be sitting by their bedside hoping they dont die? Could diabetes really do this to us? Yes...it really could. I forget sometimes that this disease can take a life. The day to day work is so consuming that you can forget the long term possibilities...until of course you are so shockingly reminded of them. I know that I experienced that day - and every emotion associated with it - three times over. Saw the girls' faces every time I looked at his - so scared and shocked. His prognosis is good and the doctor said it was "a warning shot over our bow" - a reminder to continue living well and managing diabetes aggressively. A game changer. A do-over. A second chance that many never get. Will he use this chance to examine his life and live more fully? I hope so. Times three.

Me Too

It seems sometimes that everything that goes on in my life has to do with someone else. There is very little 'me time' in mommy-world and it is even more so when your child (or in my case, children) has a chronic medical condition. Type 1 diabetes is a full time job...one that I didnt apply for but is mine, for better or for worse! I dont think that you can fully understand the life-altering nature of this disease unless you live in a household with it; I have it times 3 - two daughters and a spouse. I can tell you it is not an easy place to live some days. And there are times when I think I might just lose my mind. But the love and laughter and commitment to my family help me overcome the bad stuff more often than not.

One thing that I am not committed to, however, is myself. I have gained over 30 pounds since my first daughter was diagnosed 6 years ago. It seems that the more I try and keep them in good control, the less control I have over myself. And even though I know the ins and outs of their dietary habits, my own have suffered greatly. I make an effort to see that they exercise but do not require it of myself. For a while now, I have been feeling about as low in the self-esteem department as you can get. I dont look in mirrors. I dont wear clothes that I love because I am afraid to try them on and have them not fit. I delete pictures of myself so that I dont have to have a reminder of how I look. I hate my body and I hate how that makes me feel. For so long I have ignored myself, afraid to take on this battle in the face of all the other battles I encounter each day. How could I focus on me when so many other important things need to be done? How do I fit one more thing on my list of priorities? How?

The answer came to me finally last week...you just do it. Just like you have added in every other responsibilty along the way. You just do it. Because if you dont make yourself a priority, no one else will either. You will live a life filled with unhappy days, frumpy sweatpants and no photographic record of you having ever been here. Is that what I want for myself? Is that what I want to give my girls as an example? Hell no.

I joined Weight Watchers on Monday, 2/9. Now I count points and carbs. I am terrified that I will fail. I am overwhelmed by this new lifestyle; I am afraid that by focusing on myself it will mean that I lose focus on everything else. My all or nothing mentality is working against me, but I intend to remain strong. I am determined to make it work; to just do it.

It's time for me to think of me too...

Confessions of a Diabetes Mom

So once again, it has been 18 months since my last post. I feel like I am in confession: "Forgive me Father for I have sinned. It has been 18 months since my last posting..." But in reality, I can't believe this much time has passed again. Life is once again radically different for us and I am looking for a way to chronicle my journey but I can't seem to commit to writting, when so often I feel like I should just be committed!

My last post was just days after my youngest daughter's diagnosis of Type 1 Diabetes, making for a total of 3 insulin-dependent diabetics in my family of 4 - a fact that I never imagined would be a reality. Frankly, I never thought we could be that unlucky, although I know genetics, not luck, really were the deciding factor. I believed that a 50/50 split was more than enough sacrifice for one family. I thought she would be spared, that I would be spared. That I would have a little refuge from our world of diabetes. Someone I could take to lunch and not have to ask, 'Did you test?' Someone I could run an errand with and not have to worry about packing a meter and a snack and getting back in time for dinner. But that didnt happen for us, and for a while I believed it was because I had hoped so deperately against it.

Most people who live with diabetes are the minortiy in their homes. Their families, though affected, can't understand how it feels. That is not the case in my house...we have our own built in support group. My girls have each other and their father to lean on, to talk to. I am a necessary - ok...critical - part of the equation but when it comes right down to it, I don't have this disease. I am the minority here. I can tell you as a wife how it feels to call 911 because your husband's bloodsugar has dropped so dangerously low that you can't help him but I can't tell you what it feels like to be low. I can tell you how hard it is to watch your daugther change a pump site and cry because the needle hurts, but I don't know what it's like to wear a pump in order to live. I am immersed in this disease but removed just enough to feel like an outsider. Sometimes my house is the loneliest place in the world. That is why sharing my feelings here - outside of my family dynamic - is so important.

Sometimes at the end of a good day, I can step back and see that this really isnt the worst thing that could happen to us...many families face greater hardship. And instead of saying 'Why my family?' I can turn it around and say 'Why not my family?' We are strong, and capable and willing to fight. We are an example of people living well with diabetes.

But even on the good days, I wish we didnt have to.

Time Flies

It's been almost 18 months since my last post. Life has changed in so many ways since then.

In June '06, I was laid off from a job that I had held for 10 years. A job I loved, in a firm that I thought loved me back. But business is business, and companies - and people - change. I was not willing to restructure my world to fit into their new organization; and so, I became unemployed. I stayed home with my kids for the summer and we had lots of fun. We spent time at home, instead of in the car. We made friends with our neighbors, walked to the park and enjoyed the unstructured days. It was the happiest - and most relaxed - that I had ever been.

School started in the Fall and my youngest daughter started Kindergarten. She loved it from the start. She is like the school mayor! Everyone there knows her, tries to vie for her attention, and being the diva that she is, she just eats it up! My oldest daughter entered 4th grade and it struck me how quickly the years have passed. I remember her first morning of kindergarten like it was yesterday!

My job search really picked up in August, and by mid-September, I was working again. I found a job at a community hospital in their PR Department. It's a great fit for me. It makes me happy that I'm in a people-focused environment. The work is challenging and the schedule is flexible. I'm happy, and my contribution to the organization is valued. It was the right choice.

The holidays and a mild winter passed quickly. Life had taken on a comfortable, all be it hectic, routine. We are creatures of habit in our house. Routine rules. And even though I may claim to want a bit more excitement, crave a bit more adventure...deep down, I really only want those things if I can control them. In my book, 'controlled' beats out 'spontaneous' every time. So, when the rug gets pulled out from under you, and your world turns upside down, it is all the more difficult to face the challenge before you.

On March 26th, our 6 year old daughter was diagnosed with Type 1 diabetes. Her body has stopped producing insulin and therefore she cannot convert the glucose in the food she eats into energy that her body can use. She has to have insulin injections to replace what her body can no longer make. She tests her blood sugar at least 5 times a day. She is at greater risk of heart disease, blindness and amputation. Her ability to safely carry a baby someday is compromised. Her life expectancy is 15 years shorter than a non-diabetic. Have I been reading up since her diagnosis? No, I haven't. You see, I know all of this because my oldest daughter has T1 diabetes too; she was diagnosed 5 years ago today. And my husband has it too. In fact, I am now the only person in our house who doesn't have it. And Im feeling very alone.

This wasn't the adventure I was hoping for...

Could It Be?

HOW GOD SELECTS THE MOTHER OF A CHILD WITH DIABETES
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. Did you ever wonder how mothers of children with diabetes are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

Armstrong, Beth, son. Patron Saint Matthew."

"Forrest, Marjorie, daughter. Patron Saint Cecilia."

"Rutledge, Carrie, twins. Patron Saint Gerard. He's used to profanity."

Finally, He passes a name to an angel and smiles, "Give her a child with diabetes."

The angel is curious. "Why this one, God? She's so happy."

"Exactly", smiles God. "Could I give a child with diabetes to a mother who does not know laughter? That would be cruel".

"But has she the patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I am going to give her has her own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she cannot separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with less than perfect. She does not realize it yet, but she is to be envied. I will permit her to see clearly the things I see .... ignorance, cruelty, prejudice ... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in mid air. God smiles. "A mirror will suffice."

To this I say...Amen.

Abs of Steel

I recently purchased a new piece of exercise equipment so that I could re-invent my physical self. I saw it on a TV informercial. Its called the Total Gym. Chuck Norris and Christie Brinkley love it and I was pretty sure that if I had it, I would love it too. So I bought it.

Then UPS delivered it and I pretended for 3 days that it wasnt on my porch because I didnt want to have to use it. Not a great way to start.

Eventually Dan saw it out on the porch and dragged it into the house. It weighs like 110 pounds and neither of us wanted to bring it down the stairs so we left it in the kitchen. Very handy. I laid stuff on it. Used it as extra seating. Avoided looking at it.

During my Thursday night TV viewing last week, Dan decided that NOW would be the time to put it in the basement. With me complaining the whole way about it not taking longer that the commerical break, we got it down the stairs. That was a workout all on its own. I needed to rest after that. But thankfully, I didnt have Chuck Norris or Christie Brinkley staring up at me in my kitchen anymore.

Sunday morning I found myself sitting on the couch in my jammies watching TV. I was clicking away and found myself watching an infomercial. It was for the Total Gym. Damn, I thought. That looks like such a cool thing. That would really get me into shape. Duh! Could it be that I had already forgotten that I owned a Total Gym? That it was in the basement still all boxed up and waiting? Yep! The guilt was overwhelming. So I hauled myself off the couch and went downstairs in my jammies and took the first step toward fitness.

The box says 'fully assembeled - just open and use'. Yeah, right! After an hour of what I consider 'assembling', it was ready to go. It is a really neat machine. I am impressed by it and the potential it offers. So I hopped on. Now, the manual offers 4 levels - pre-beginner, beginer, intermediate and advanced. Who the hell wants to consider themselves so out of shape that the are pre-beginner? Not me! So I started with beginer. It was sometime during the 'overhead arch' that I began to notice the stich in my side. I kept going and it seemed to subside. I finished all of the exercises and felt really great. I showered and went on with my day.

Sunday night I was laying on the couch (are we seeing a pattern here?) watching a really bad TV movie and I rolled onto my side trying to get comfortable because I had a bit of a cramp in my side. The cramp turned out to be the 'stich' of earlier that day. Only 100 times worse now. By morning the 'stich' had grown into a 'stab' and my breathing had become compromised. Laughing and coughing were out of the question. They still are...

Having a bit of a dramatic flair about me, I am convinced that I have torn apart some crucial abdominal muscle that will forever keep me from getting in shape and wearing anything below a size 14. In reality, however, Im sure that I have simply pulled an abdomial muscle that somehow survived 2 pregnancies and was just withering away inside me praying for a crunch or two to keep it from extinction. I am trying to take some comfort in knowing that I still actually have abdominal muscles. I thought they were a thing of the past. Imagine that.

So now I am waiting to re-invent myself once again. When I can take a deep breath and roll over in bed without tears in my eyes, I will start fresh. Only this time, it will be as a pre-beginer. I think even Chuck & Christie will understand.

A Walk In The Park

I have found myself thinking lately that perhaps I should never have qualified to become a mother. That my temper and my selfishness would be traits better suited for a woman disinterested in raising offspring. That my total lack of patience and total need for control are characterisitics of an individual incapable of managing a family.

And yet...I do.

Now dont get me wrong...I love my kids. Love them beyond measure. They are 2 of the most interesting / beautiful creatures I have ever met. I can't imagine what life would be like without them in it. They are amazing. But sometimes - like today - I find myself thinking "I am not capable of doing this."

I feel like I am short-changing them somehow. Everyday. Like Im not holding up my end of the deal. And yet, I dont know how to do more. I cant even imagine where 'more' would come from right now. Because I am on empty. And being selfish is the only way to fill back up. But Mommies arent supposed to be selfish. And not being allowed to be selfish makes me resentful. Oh..wait...Mommies arent supposed to be resentful either. Damn!

How do other mothers just do it without question? Without feeling like they are screwing it all up? Without feeling completely, utterly, totally overwhelmed? Without second guessing every move they make? Am I missing the secret?

I have been trying so hard lately. Ive been going outside...and to the park. That was a huge step. I hate being outside. But I do because they love it and I dont want them to hate it like I do. Ive been letting them watch more TV because they love it and its easy. But then I feel like I am missing some learning opportunity and get pissed that all they want to do is watch TV. When, honestly, all I want to do is sit my ass down and watch TV too! Ive been cooking easier dinners and not really caring about exposing them to new and exciting cusine. But then I know we should be eating healthier. I judge myself and the choices I make all the time. I am my own worst critic. Laundry not done? My fault! Hannah's failing math? My fault! Spaghetti again??? My fault!

And Ive been yelling. Something I swore Id never do. We lived near the 'Yell Family' growing up. We laughed at that woman. Rolled our eyes. Gave thanks that we didnt live there. Well, now I do. I can yell about anything. Spelling words. Who gets what seat at the table. How many books to order from Scholastic. The VISA bill. Barbies. Insulin. Anything. You name it and given the right mood, I can yell about it.

I have to go now and get my kids from school. Then we will go to the park. I promised them. That's what Mommies do. Even when they think they cant.

In Memory

My Pop-Pop died in July after a couple of very long months. In the end, he just couldnt fight anymore and he left us to be with my Nanny again. I still forget sometimes that he is gone and expect that I will see him at mom's for dinner or that she will tell me about bringing him for groceries. I wasnt there when he died. I was on vacation in Maine. Before I left he told me about a trip he and Nan had taken to Maine with Aunt Jane and Uncle Bud. He talked about eating lobsters and getting taffy at the Goldenrod. It was the most lucid he had been in days. He held my hand and made me think that it was ok to go. So I went. He died 3 days into the trip.

Me not being there when he died was really a reflection of our relationship. I always felt a little removed from him...a little bit of an outsider in his world. I had learned to know him and love him thru my Nan and once she was gone, we lost that thread that had woven us together. He was a painful reminder of her and how much I miss her still. I loved him but I never really got to know him because I could not move past the grief.

So I went to the Goldenrod the day he died. I bought taffy and cried all alone. Cried for the moments we would miss in the future and the moments I had missed in the past. But mostly I cried because I knew they were together again. Forever.

Major Fat Day

My belly is rubbing up against the inside of my shirt today. It is making me crazy. In fact, I think I can feel myself expanding as I sit here in my seat typing.

If you can't already tell, I'm having a fat day.

I'm struggling with my body image this week, even more than I typically do. I have my period which always adds to the body drama. I havent been exercising and Ive been eating like shit. I have no self-discipline in this regard. The more I think about making positive changes, the less likely I am to make them. I wasnt going to get iced coffee anymore...Ive had it 3 days in a row! I wasnt going to drink alcohol during the week...Ive had a drink 2 of the last 3 nights. I was going to start exercising again...nope! I know how good I feel even after just one workout - its wonderful - but I am just not commited to myself.

Why is that?

Maybe its because I dont feel like I deserve a healthy/nice/fit body. But why not? Maybe its because by the end of the day I have no energy left to carry out my exercising intentions. Maybe Im just meant to be flabby and sad.

I will never be an underwear model. I will never again wear a bikini. I am not ever going to be a size 8. But I really dont even desire these things. I just want to be in a happy place with my naked self. I hung a full length mirror in my bathroom in an effort to develop some compassion for myself. To develop a love for my body just as it is, not how I wish it to be. And that is not happening. Now I find myself hiding from the mirror when Im in the bathroom. Scootching into the shower and shutting the doors before I can see anything. And it just makes me feel worse.

So right now, Im in a new kind of 'High and Low' place...which is more low than high. But I think if I write about it, just get it all out, that maybe I will start to see some reasoning for my destructive patterns. That I will begin to see why I am in hate with myself. Because I deserve better than that...

Don't Be A Boob

I'm not talking about diabetes today.

Today I'd like to discuss boobs. Because let's face it, boobs have Highs and Lows too. For me, today is a low boob day at least on the right side. The left one is pretty high.

You see, my husband believes that my body woes go hand in hand with my poor undergarment selection. That if I wore pretty underthings, maybe the rest of me would feel pretty too. (Good thought, honey, but not at all true.) So we went shopping on Sunday for new underthings. Ugh.

We spent about 2 hours looking at bras and then trying them on. There must have been 20 of them. Ugh. Its almost as bad as trying on bathing suits but at least in this case you get to leave your pants on. Did I mention that I hate trying stuff on?

I ended up with 4 nice bras - the polka dot, the baby doll, the swirly black thing and the cheeta-licious one. They have sat untouched in the Kohls bag since Sunday because the pants that I did not try on in the store (because I knew they would fit), didn't fit. And that pissed me off, so I didnt want to look in the bag at all after that. Ugh.

But today I busted them out (get it?). Ha ha.

I wore the baby doll bra today and I have been reminded time and time again today of how much I miss my frumpy, comfy bras. My right boob keeps falling out of the cup and wiggling all around in my shirt. The left one looks awesome though...go figure. I even made sure the bra matched the underwear I was wearing. Most days Im lucky if my shoes match, so this was really an amazing task for me this morning.

P.S.
I packed a frumpy, comfy bra in my lunch bag so that if things got out of hand today, I could change. This too was an amazing feat, since most days I can't even remember my lunch!

The Happy Place

I haven't written in a few days, and I missed it. A lot. Oddly enough, last week my mom gave me a journal that I kept during college. It was my whole freshman year...it was crazy looking back over those times. I have forgotten so many details of my life back then, but if you had asked me then I would have said I'd remember every moment. Not so. I didn't even remember the journal project for God's sake! And in the teacher's comment section she mentioned that I had a knack for journaling and should continue. Imagine that. It's taken 12 years...but maybe she was right.

Hannah-B had a visit to the endocrinologist yesterday. Typical visit. She talked more to him than normal, which was a pleasant surprise. We discussed dosages and HA1C levels (7.6) but nothing new. Then came the blood draw. Ugh. I always find myself feeling the same way when it gets to this part. A mixture of dread, anxiety and frustration. There must be an easier way...but they never seem to find an easier way before we get there for the next visit. So we muddle through exactly like we did 3 months before. I start out patient and understanding and end up feeling pissed off because she just can't sit still and get it over with. Then I feel guilty for not getting how much this sucks for her too. And how scary it must be and how brave she really is. And I realized yesterday that I forget that part a lot and I'm so sorry for that.

Since we are in spring break week, J&D came to pick the girls up after softball practice for a sleep-over. As the girlies were walking towards the car, I watched them and thought that they might just be the 2 most beautiful creatures I have ever seen. My love for them at that moment was overwhelming. I felt so satisified with my life right then that I wanted the world to stop so I could live in that moment forever.

It was the happiest I've been in a long time. And I needed to write it down so that the next time I think nothing is going my way, I can look back and see those words and know that happiness does exist within me. I just don't always know where to look.

A Defining Moment

I have said all along that I will not allow diabetes to define Hannah. I do not want it to be the first thing people think of when they think of her. I want them to see beyond that. To see her outrageous smile and her quirky sense of humor. I want them to know how wise and wild she is.

I have worked hard to keep her disease from being at the forefront of her life, so that she doesn't have to focus on it either. But it's hard work keeping all of that in the background. It's like I'm the prop guy in a low buget movie running around trying to keep up appearances on the set. Make it look natural. Make it look easy. So that people look past the diabetes drama and love the Hannah I love.

But you know what? The Hannah I love DOES have diabetes. It IS a part of her definition and I think my biggest struggle is in coming to grips with that. Accepting it - even after 3 years - is not an easy thing. Why am I putting this pressure on myself to create the illusion of a life without diabetes when it is such a huge part of who we are?

My First Day

My daughter has Type 1 diabetes. So does my husband. I know the in's and out's of it. I know the science of it. What I don't know is how to come to terms with it. Is that even possible? I need a place of my own to think and ponder and even complain. And since home isn't usually quiet enough to think, I thought maybe I'd 'think' on my lunch hour. A journal wouldn't work for me. I would constantly be critiquing my handwriting and trying to find a place to hide the book. A therapist would work, but the co-pays would get out of hand. The support group thing is ok, but I really only want to talk about me and so I've decided to find another outlet.

OK. I went to our diabetes support group on Saturday. Hannah-B went with me even though she resisted. She complained most of the day about being there. I loved it. 4 months ago I couldn't have imagined myself sitting there with a group of strangers taking about diabetes, but now I'm hooked. They get it. They get how much this sucks. But I realized that I am sort-of an anomoly there. I am the only one whose spouse is also diabetic. I have some different issues at my house to deal with. But for the most part, they understand.

We talked about needing to 'feel' the frustration of diabetes. Let yourself be angry. Let yourself cry. And I realized that I don't do that enough. I feel like I can't, to be honest. I think if I did I would never be able to move forward because it would consume me. I would let them all down. I would make Dan feel guilty. I would look weak. Like I can't handle it...I told them on Saturday, 'I can't feel it, because I have to do it'. I have to live with it - everyday. Think it's tiring to keep my kid overnight? Try doing it the 364 other days of the year. It's hard. Harder than I ever thought it would be. Try making it all seem 'normal' for her when it is so not normal. Try acting like you aren't scared to death that one night the planets will align against you, and both of them will have an insulin reaction at the same time. Who do you help first? Or that you don't spend countless nights worrying about how many times Tessie pee'd today and how much juice she drank at dinner and what if - oh God - she got it too? I can't begin to imagine the amount of tranquilizers I would need to take. These are just some of my worries.

In fact, I worry all the time. And though it is in my nature to overthink things, I blame this disease for my heightened sense of anxiety. It started long ago with Dan, back in 1998. The morning I had to call 911 because he wouldnt wake up. It became real that day, the idea that this disease could take him away. There have been plenty of other days with Dan that have shaken me to the core, days I don't even like to remember. But I know that morning - his 1st Father's Day - when he wouldnt wake up, changed me forever. It made me pull away just a little bit. So that if something bad did happen, just maybe it wouldn't hurt so much. And in some way, I know I've done that with Hannah and I fight it because I know it is so wrong but I can't help it. It's like self-preservation for me. Guarding against the 'what-if's'. But it also causes me not to live fully and freely and I hate that about myself.