Another Anniversary

As we approach Tommy's 6th anniversary of being diagnosed with Type 1 Diabetes I have encountered a first for me. Just a few days ago Tommy was going to be getting braces. He was very nervous about the thought of it and I tried my best to distract him leading up to the visit with the dentist. In our hurry out the door I left his meter and CGM on the dining room table because I forgot he had diabetes. I FORGOT he had diabetes! For 6 years I have always thought about his disease first. It's what I plan for, it's what I need to anticipate and on this day, in this moment I completely forgot! Sitting in the waiting room waiting for his name to be called I got a text from my husband saying Tommy's things were on the table and immediately I thought what kind of parent am I? How do I forget the one thing that I always remember first. I always have smarties with me in case of a low. I have them in every purse, backpack, and any other item with a pocket. I also knew that Tommy's blood sugar tends to run higher when he gets nervous so I knew for the next hour he'd be ok with.

So what does that have to do with his 6th anniversary of his diagnosis? Well if you had told me 6 years ago in the hospital that it would be possible to forget that your child had diabetes I would have laughed, it wouldn't have been possible. Nothing in those first few days, months, years would have surpassed diabetes. Six years allows for so much growth and understanding.  I have watched Tommy learn how to manage his disease and make it work for him. At his last doctor's visit he had the lowest A1C he's ever had. Tommy earns every bit of that achievement alone. I may buy the food but we allow him to make food choices (as much as a 10 year old should) and he makes good choices almost all of the time. He loves pizza but knows it's not practical to eat it every day. He understands that he should bolus for his food ahead of time. I tell him when a meal is coming and tests and boluses then. He understands that if he's running high he needs to wait a little longer to eat. He doesn't like pump changes but knows it's all part of it. His willingness to help with his disease makes all the difference in the world. I thank him for testing his blood, it's an "oh good, you already bolused" when he gives his insulin before a meal, and it's listening to him when he's having a bad day. We are a team.

What happens when both members of the team forget the T1D meter and CGM on the dining room table? We agree it is an epic fail and then decide what color rubber bands to get for his braces. I'm not sure I'll forget that he has diabetes anytime soon but I'm glad the neither of us thinks of diabetes as the end all of the day. Sometimes there are things bigger than diabetes and I think that's a healthy attitude!

Our Reality

I have heard how "manageable" diabetes is and how "it's not so bad". I am a positive person and try to always look toward the bright, humorous side or our day to day work with T1D. Although I don't complain about his disease much it takes a great toll on us. 

When you are potty training a child you can complain about it. It's difficult, it's tiresome, you try to think for the child's bladder: when is the last time they drank? should I have him/her try now or wait? This process lasts for a short time then the child is potty trained and you move on to new things. Having a child with diabetes is just like potty training, we are always thinking for his pancreases and making decisions based on what he eats, what he did, what he is about to, etc. The difference is this is not for a short time, till there is a cure this day to day work will not end. Which is why complaining won't do much but drag you down. There is a reality to the disease though that is a heavy burden to carry.

This is our reality: 

In the morning you hope for a number in a range to start the day. You calculate carbs for breakfast and give insulin. Before hitting the "ok" button on the pump you have to think about the day. Will he be running around right afterwards? Yes, give less insulin Is his numbers a little higher than usual? Check his pump to see if it's ok, if it is give insulin but wait 30 minutes (or more) to give food so the insulin can get to work. Don't forget to set the timer for 30 minutes - we don't want him to run low. Between breakfast and lunch you will check his numbers a few times - did the pump work correctly, did you guess the amount of activity correctly, did he have a snack. For lunch you correct any high or take away insulin if he's running low and do the same for dinner. At bed you do another check and cross your fingers for a great numbers so you don't need to worry about his dexcom alarming in the middle of the night. On days of a lot of activity it's possible to go low and he will need juice in the middle of the night. Many times this can be prevented by reducing his basal over a few hours at bed but you have to also hope you did this correctly. 

This doesn't include changing his pump every 3 days which takes only 5 minutes but for him it means a needle sticking him then leaving a cannula in him to deliver insulin. Depending on the area this hurts more or a lot more - it's never pain free. He also has a dexcom inserted, also with a needle, every 2 weeks. These devices make "managing" his T1D much easier. Before his pump he would get at least 5 needles a day and would need to prick his finger at least 6 times a day. He needs blood work every 3 months and visits his endo every 3 months as well. Based on his blood work and what his numbers look like over that time adjustments are made. As a parent you think of these visits as report cards - how well did you take care of your child, it's a long day for both of us.

There is never a time he can just grab something to eat without thinking about carb counts and how much insulin he'll need. There is never just running out the door without all your supplies (meter, dexcom, and something to treat a low). You live your day based on numbers and the ability to react based on those numbers. This is our everyday when things go well. 

Just this week we had a particularly difficult week. In the past 6-8 months Tommy has developed a puffiness to the top of his arms from his pump. We've needed to find a new location for his pump while that healed because the area wasn't absorbing insulin. After hitting muscle on 2 pumps in a row and the insulin not absorbing we got perfect placement on the 3rd pump. It was good timing as we were going to the Crayola Experience that day. We spent the morning bringing down the overnight high and by lunch he had perfect numbers. A short time after entering the play area I heard Brady yelling "Tommy's pump is screaming" and sure enough there was a communication error with his pod and it was no longer working. I had a back up insulin pen with me but that doesn't give him his basal (the insulin that gets delivered every hour). So I kept an eye on his numbers and gave him a shot when his numbers were getting too high. Since we were almost 2 hours from home and it was close to dinner I knew I would need to figure his dinner without his pump to do the math and he would need another shot. We try to bolus him for dinner before hand to keep his numbers steady but when going out to eat that is not possible. We got home and I put on another pump and corrected the high. Four pumps in 2 days! I felt bad for him having to have it changed again and I couldn't help but think about the wasted insulin and the wasted pods that are very costly every month. 

There are days that you want to put your head down and cry but you can't there are always new numbers to look at and new reactions to those numbers. So when people say "it's not so bad" I want to say yes, yes it is that bad some days but what's the sense in complaining. Complaining won't change the disease. Hating diabetes will just take away the energy I need to read numbers and react to them. I want to spend my extra energy loving my son for going through this with a positive attitude. I share this disease with him while his young then it becomes his job to read and react to numbers when he gets older and more independent. If we have a healthy attitude so will he. I will save my tears when there is a cure or when the artificial pancreas is an option for him and I will cry in relief and joy. 

Camp Roundup

Two years ago I would have never thought Tommy would go to a non-diabetes camp and sail through 3 weeks in his own but he has done just that! 

Let's rewind a bit. Two years ago Tommy started camp just after starting HGH (human growth hormone), a new medication to help him grow. Tommy has always hung around the 10th percentile for height but since being diagnosed with diabetes he quickly fell off the curve. The medication was necessary for him to grow but it didn't not come without side effects. The biggest problem was its effect on his blood sugar, sending it very high, for weeks. No amount of insulin was bringing it down and it was a very difficult time for us mentally and him physically. During that time he started camp at our public school. I thought it was a great fit because the nurse would be at school. By day two he was needing to go to the nurse 5-9 times a day and camp is only 3 hours long. He wasn't having fun a felt different from the rest of the kids, the part I took the hardest. We have always shown Tommy he can accomplish anything with his disease but this time it had us beat. He withdrew from camp and never wanted to go back. 

Now flash forward 2 years..he shows interest in camp and I signed him up! Now armed with a dexcom that displays his blood sugar and MUCH better numbers he enters camp. This year is different, he's older and understands much more about his disease. During camp he counted his own carbs, dosed himself for all snacks, and had someone call me when things were not right. I was SO impressed with him during those weeks. He loved camp and diabetes was very much an afterthought. 

We did encounter a nervous nurse who called me a few times despite the fact that Tommy was out playing at gym. His weeks at camp couldn't have gone better! 

Tommy is looking forward to camp next year and I'm so glad that we always look to the future. We take the lessons of an experience (good or bad) and just keep moving forward. 

He Lived

Since Tommy's 5 year diagnosis anniversary in April I've been thinking there must be some profound statement that goes along with that. There must be something to say for living with a disease for that long and I just couldn't find the words. Well, today I was painting a preschool classroom and was listening to some music. The song "I Lived" by One Republic was on and as I sang along I realized that is the profound thought! I LIVED! 

The song talks about owning every second and Tommy has! It talks about "doing it all" and he has.Diabetes hasn't   stopped him from doing anything that he's wanted to accomplish. 

In the past 5 years Tommy has become a big brother, graduated preschool, made it through kindergarten through 3rd grades, played soccer, played baseball, played basketball, excelled at writing his own works, became an avid reader, learned to ride a horse, continued his love for movies, learned to write comics, gone to Hershey Park too many times to count, gone to Disney, spent summer days at the lake or at the beach, has built snowman and gone sledding, learned his own sense of style, learned to tie his shoes, developed his own sense of humor, he's made friends, he's smiled, he's laughed, he's cried, he's lived!

Just recently Tommy asked me about the day he was diagnosed and wondered if I cried when I found out. I said I didn't cry when I first found out because I didn't want him to be scared. He told me that at the hospital he felt like I could take care of him and didn't feel any different and I realize we lived too. Our world changed on April 25,2011 but it didn't stop. Our life has been so full in the last 5 years and I'm grateful that we decided to thrive through each difficult time that we've needed to walk though. We've lived! 

Background Music

Last week we got the amazing opportunity to take part in a camp for children with disabilities and their siblings. The camp is run by Pony Power Therapies and it gives the kids time to ride horses, interact with them and do different farm activities. Parents also take part in a program with the horses. 

To me what made this week so special was that the kids there were not defined by their differences as they are in most of their everyday life. Each family was unique but when we entered our morning circle there was one common goal to be achieved by everyone. There are so many activities that Tommy has done before. Normally after I tell whomever is in charge that he has type 1 diabetes there is a face of fear. In my head I laugh because it's typically the same look of panic or fear followed by, "but your staying right, I don't have to do anything".  I appreciate the way they feel, they don't want to harm Tommy but they don't realize he's not that breakable.

 At this camp last week every family had there own troubles, their own journeys and no one had that look of panic, no fear someone would break. The kids rode their horses and you could feel the pride that was shown in their smiles. 

For the first time in 4 years I felt like we were on a disease vacation. Obviously I still monitored him, his diabetes is the background music of our lives. The music is always playing, I'm used to it now. I know each of the families at camp had their own background music playing too but I think most would agree the music wasn't as loud as it normally is. Each day was joy. My kids miss "their horses", they miss the amazing staff who I can't say enough good things about, and I miss the sense of community they were able to foster in 4 short days. 

During that week Tommy didn't complain about site changes, he didn't complain about his HGH injections, he seemed ok with the background music. I think the difference was for the first time he didn't feel like everyone was looking at him as being different, he was just another kid excited to ride their horse. 

I took a lot of mental snapshots in those 4 days. The joy on their face as they rode, the pride they felt when they walked their horse in the ring and their sense of accomplishment when they were done grooming their horse. When the background music gets a little too loud I will flip through those amazing snapshots!

The Real Reason I Walk

A few weeks ago I got the privilege of listening to a man who go to "try out" the bionic pancreas (artificial pancreas). It was like listening to a science fiction novel: A man with Type 1 Diabetes that  was able to eat and drink what ever he wanted to and he never worried about his blood sugar. Although the down side is he had to wear a pump and CGM like Tommy with an additional pump that would give him sugar (or glucagon) when he went low. The 2 pumps and CGM talked to an iphone (of all things) and a very fancy application decided how much insulin to give him as he ate. What hit home for me is when he said he went to the aquarium with his family and for the first time was 100% present in the moment because he didn't need to think about his diabetes.

His talk got me thinking - how much has diabetes taken away from Tom, from Tommy, from both Allison and Brady and us as a family. The answer I came up with is TOO MUCH!!!

Each year I begin fundraising for the JDRF Walk to Cure diabetes on the anniversary of the day Tommy was diagnosed. It's my way of recognizing a hard day for us in the most positive way I know how, by trying to find a cure. I know a bionic pancreas isn't a cure but it's the closet thing we have to one right now that will allow everyone with diabetes to think a little less about their diabetes and a little more about life around them.

It's difficult to explain to someone who doesn't live with someone with diabetes what every day is like. Many people tell me how manageable the disease is and how great it is that insulin exists and that is true. What people don't see is all the decisions that are made each hour of the day to "manage" diabetes.  It starts in the morning - what's the blood sugar reading - is it high or low, what to eat for breakfast sometimes hinges on what we are doing that morning - have I calculated the correct carbs - what do we need to pack up before leaving - does he have the paperwork for the nurse with is lunch carbs - and this is all before leaving for school. It's not just the decisions that need to be made is it's the little things you miss out on when you are feeling low or your sugar is too high. There are too many times to count that Tom eats a little extra sugar to "prevent a low"  and while it helps in that regard it can also make him  cranky and not enjoy the outing as much as he would have. It sounds small but it's not when you add a life time of those little moments. I want Tommy to get everything out of school that he can - to learn the information and be able to retain it.  I want Tommy to be able to enjoy every minute of his wedding day when he gets older - I don't want diabetes to need to be factored into the day. I don't want his wife to be in the delivery room and look at his pale face and wonder if it's because he's nervous or because he's low. I don't want him to worry about carrying around a meter, a CGM, sugar to combat a low, extra insulin in case of pump failure and all the things that are needed for that list. I want the choices that he makes a day not to have to factor in diabetes first. I want him to be 100% in the moment.

So why do I do the JDRF Walk to Cure diabetes? The truth, because they need money to fund the bionic pancreas and so many more projects that takes away some of the manageable things a person with diabetes needs to manage. Simply, I want 100% of my husband and 100% of my son. Diabetes has taken too much from them and our family already!

Memories

It's funny how memories work. I have so many memories in my head of my children from the time I learned I would be having each of them to today. Ninety-five percent of these memories are all good - the first smile, the first mama, the first I love you, the first day of school. They will never remember those firsts so I email them. I have email accounts for each of my children and I email them about the sweet things they do or pictures of a kindergarten graduation. On their 16th birthdays they will get their login and passwords and will learn of all the memories I have saved for them. For Tommy his emails will have other memories, ones that I hope when he reads them will not be a factor in his life anymore. I hope and pray that by the time he is 16 diabetes will be a disease people USED to have and will just be a memory. The emails I send him are filled with my pride for the first time he tested himself or about the day he got his pump and his new friend Lenny the lion. I want him to know as he grows up how incredibly brave he was at the age of 4 being first diagnosed and how quickly he learned the tools to help take care of himself. Each thing he learns gives him freedom - a freedom that was taken away on April 25, 2011. The emails are to remind him of all that he has accomplished and all that he can do.

Today when he woke up his blood sugar and ketones were high - for the second day in a row. Yesterday I changed his site (it was site changing day anyway) and all was good from then forward so the high number today either means he's sick or a bad site. I gave him his correction (insulin for the high blood sugar) and insulin to cover his breakfast with in a shot so I knew he'd get the insulin he'd need. As I was giving him the shot he asked if he was scared of shots when he "got" diabetes  - I said you were but you we worked on it. I said "Don't you remember you got to watch trailers" He said "I don't, I was too little".  I cried - I couldn't help it. I'm a together person in front of them. Since he's been diagnosed there has been maybe one time he's seen me cry and that was right after I had Brady when I completely lost it and didn't think making it through the day was possible with a 4 year old with diabetes, a 1 year old and a newborn but that was more about post baby hormones then anything else. Today I was just so sad for him - two years is enough time to forget what it was like to get insulin shots for the first time. I am happy he doesn't remember how difficult it was at first, how it took both Tom and I to give him shot. That we needed to hold his hands so he didn't try to hit our hand away, the crying before every meal because it meant he would need a shot. Thankfully those days ended quickly thanks to an ipad and lots of hugs. I'm glad he doesn't have the memories of that I have but I can't help but think he won't have a memory of what life was like before diabetes. Tom does, he was old enough at 9 to remember things before diabetes.

Memories are a tricky thing. Today my ability to remember makes me sad for days before April 25th when Tommy was just a kid - not a kid with diabetes. Sometimes the weight of the responsibilities seem so much more then others. I don't ever feel sorry for myself though because I know these responsibilities will be his one day - I see it with Tom. There are some days that you just say "today sucks" and you move on. I'm moving on...his numbers are better....ketones are gone....we've moved on to the topic of Teenage Mutant Ninja Turtles. I'll pass on emailing him today - Saturday he gets to play with some of the kids he'll see in 1st grade - that will be a great email to send!

Breathing Again

Next week Tommy will go for his growth stim test and I've been nervous about the test since we found out he needs it. In the last week I have begun planning activities to lead up to next week - happy things for us to talk about when he's in the hospital. I've pre-bought a few toys, downloaded some new apps on the ipad and tomorrow we are getting some books at the library. Tomorrow and Monday he'll hang out with his friend London. I'm trying to think about everything. I have already planned a trip to toys r us on Tuesday after I tell him he has to go to the hospital for the test. 

The test itself is stressful because he's never had these drugs, its an IV - etc. His diabetes complicates the test as well. I know he'll need to have his pump site changed the day before so we know it's working perfectly, there will be checks during the test to makes sure his blood sugar doesn't drop too low and he can't eat anything before the test which means if there is a middle of the night low the test is cancelled. 

So.... I have all of these thoughts running through my head and then Allison pees through a pull-up for the second time in a week. She has been asking for water more often, not eating too much and of course my mind goes right to diabetes. Last Valentines Day we received a letter telling us she has none of the auto antibodies to predict diabetes but that letter gave me no comfort this week. Tonight I figured for piece of mind I would test her blood sugar before bed. She was happy to get her blood sugar checked after Tommy and it killed me that she did it with a big smile on her face. Who would think one number could mean so much. As it turns out my worries were not needed - her blood sugar was 110 - not bad for 2 hours after a meal.  I started to breath again but only for a moment when Tommy said  when seeing the number flashing on the meter "it won't get sent to her pump (the blood sugar number) because she doesn't have diabetes - I do - sorry Allison". He was sorry she didn't have it and I was thinking how happy I was - but my happiness turned to guilt because he still does. 

Translation - today was a crappy day with a good turn out that made me feel crappy. Diabetes won this battle but I'll be back on my game tomorrow. Just like Tommy and Tom get good and bad days with their numbers I get good and bad days on how I deal with them. I'm happy the good days out number the bad by a LOT for all of us. Tomorrow will be better :)

Choices

Before our children are born we make decisions for them, what will their name be, where will they be born, what's the best baby items for them. The 9 month preparation for this little baby can be overwhelming. Some of these choices that we needed to make for Tommy were simple - his dad is Thomas, his dad's dad was Thomas, etc - name picked! Many choices fell into place quickly. It wasn't till after his birth did the hard choices came into play. Within a month of him being born we needed to decide that moving to prescription formula, no matter the cost, would be necessary. Even harder was the decision to start him on medication for his reflux - he was so tiny and only a month old on medication- it was a hard choice but we knew he needed to grow and this medication would help keep his "fancy" formula down. 

Not surprisingly more decisions would come in the future as we flash forward to today. After he was diagnosed one of the hardest choices was switching to an insulin pump. Although we wouldn't be wearing it we needed to decide what was best for him and we are so happy that he agreed and looking back we wish we had made that choice earlier. 

Recently we have been faced with a new choice that I have thought about, stressed about, and prayed over since making the decision. In the past year we have learned that Tommy hasn't grown. He has always been small for his age, a concern of his endocrinologist since she met him but we've always taken a wait and see attitude because he was still growing. When he stopped growing blood work was done to check his growth hormone - it was very low. Again, we decided to wait and see what would happen over the next 3 months. Another height measurement and no change - more blood work and still low levels. So our next decision was to schedule a growth stimulation test to see how much growth hormone is actually being released. The steps we would need to follow would be the growth stim test, an MRI to make sure there wasn't a tumor on his brain, and then daily shots of growth hormone to help him grow. 

I knew if we did one step we had to be able to follow through with the rest or what would be the point. 

When Tommy was having headaches and needed to go to the hospital I immediately thought maybe it is a tumor!  It was a fear of his other endocrinologist which is why he had an MRI. I have never been so scared. As the doctor and I sat there waiting for Tommy to be finished with the test and come out of anesthesia I felt like I was in a fog. We were both relieved when nothing abnormal was found. At our next doctor's appointment we scheduled his stimulation test. 

The hardest part of the test is the location - Tommy will need to be admitted to the hospital for the test and have an IV - both things that frighten Tommy more than anything else - it stirs up too many bad memories. The test is scheduled for July 3rd and I still haven't told him about it. I haven't found the right words to instill confidence that this visit will be different then the last time he stayed at Valley. The truth is the end result of this visit is the same - with low levels of growth hormone he will need daily shots to give him the growth hormone he'll need. So after explaining that he needs to go to the hospital I will need to explain he'll need daily shots till he's 16 or 17 - these discussions sadden me because I know it will be hard to understand that he'll need shots even though he has an insulin pump. He will have to learn about a whole new health condition when what he should be learning is how to hit a ball and how to swim.  He wouldn't be happy about these decisions now but when he's 30 and 6 foot tall he'll hopefully look back and be happy with the choice. 

I think about this choice every day and just pray he takes this in the same way he's taken all the speed bumps he's faced in life - he just goes with the flow. I teach my students that the benefit of a test must outweigh the risk and I know that the overall benefit will outweigh the risk. I can't help but think at some point it will all be too much for him. We will take the rough days just as we do now, a huge hug and humor. His good days outnumber the bad by a landslide so that is the good thought that helps me make the hard choices. 

Everyone's Wish

I want to share a conversation between Tommy and I at bedtime tonight.
Tommy "My pinkie hurts from testing my blood"
Me "Sorry to hear that we will let that finger rest for a while"
Tommy "I wish I didn't have to test my blood"
Me "Me too buddy"
Tommy"I wish I wasn't born with this. I wish I didn't have diabetes"
Me "Everyone wishes that and there are some really smart people working on a cure"
Tommy "Smarter then you?"
Me "Yes smarter then mommy"
He smiled and rolled over in his bed.
I share this because we have a conversation like this for at least 2 to 3 nights after his quarterly doctor's appointments so I expect it now. After some appointments he cries and just says he doesn't know why. It is truly the worst feeling for a parent to not have the ability to take his hurt away. Days like this make me wish I knew every scientists phone number and could call them and tell them all to stop what they are doing to find a cure. I know they are closer now then when he was diagnosed, which is good news but its not here yet. People are quick to say how lucky it is that there is insulin and how "manageable" the disease is. I have to point out that insulin is NOT a cure its just keeping him alive till there is one. And as far a management...it's not like taking care of your teeth - you brush maybe 2 or three times a day and floss, go to the dentist and hope for the best. It's a 24 hour a day management - you are thinking and acting for a vital organ that no longer works. As I type this I'm waiting for his blood sugar to come up from 75 just to check again at 3 to make sure it doesn't drop again.
Tomorrow will be 2 years since Tommy was diagnosed. The day meets me with mixed emotions this year because of his doctor's appointment for non diabetes things saved for another blog when I can wrap my head around it. But as far as his A1c it was good and his numbers looked good too so no changes. I have continued my tradition that I started last year - I have signed up for the JDRF walk on Oct 13th. Our team will be back trying to do what we can to help find a cure. I hope our team grows even larger this year. I can't tell you the pride tommy felt this year (as did Tom and I) seeing everyone in their team shirt. We are so lucky to have such loving friends and family and so many businesses to donate.
There is not a day that goes by that I don't wish for a cure...I think that's everyone's wish.

Happy Easter? This picture was taken only a day before he was diagnosed. As you can see in his face he's cranky - and it has nothing to do with the bunny ears on his head. I think of this picture often when his blood sugar is high - I see this look now and know it's going to be a high number.

Tommy was diagnosed on April 25th but 2 years ago that was the Monday after Easter so each Easter since then has been a mixed emotion day for me. I can't help but think about that Easter 2 years ago. I decided to change my mindset this year. You see I've carried around a good amount of guilt about that weekend for the past 2 years.

Easter morning after going through his basket Tommy wanted to eat a piece of candy the Easter bunny had left that he had wanted to eat every time he had seen it in the store - I know exactly what it looked like  - it was Sponge Bob candy that looked like a hamburger...anyway...I had let him have a piece before breakfast because it was Easter after all. Then I made his favorite breakfast - pancakes, syrup and chocolate milk. We ate and got dressed for Church. This was enough time for the perfect storm of sugar and carbs to erupt into a little boy that was unrecognizable to me. When we got to church he cried because he didn't want to be there, he needed to go to the bathroom and on the way back he yelled at me. He was SO angry - yelling at me  - telling him I shouldn't make him go to church - that he was mad at me and he wouldn't stay! Now to many parents that sounds like a run of the mill temper tantrum but Tommy wasn't that kind of kid and he had an anger I had never seen before. I actually said to him that I didn't know what happened because he wasn't acting like himself. We went to my sister's house - a place he loves to go and all he did was lay down and cry. I chalked it up to a long weekend.

So with all that I knew and have learned about diabetes I know I did not cause his diabetes but I have carried around guilt for the past 2 years for the way he felt that Easter - I cooked the food - I gave him chocolate milk - I let him have candy. No one wants their child to be hurt or in pain and to know that what I gave him made him feel so badly makes me so sad.

This Easter as we sat in church I decided to leave my guilt there. I'm not even sure what gave me that freedom to let go of that feeling that has hanged around for so long. Allison was playing with her new dress-up jewelry, Tommy kept looking at his Teenage Mutant Ninja Turtle watch and Brady was busy throwing goldfish at the woman next to me - an average Sunday at church. I know that we are doing well, Tommy is doing well and that's all I can ask for. I can't feel bad for 1 day 2 years ago for the choice of breakfast food. Happy Easter? This year, yes, a Happy Easter!

Karma

I haven't had time to blog in well....YEARS! But today pushed me to the computer. I believe in karma - I do think that what we put out in the world we do get back. I try to keep that in mind - I try to help those that need it - I try to smile because I know a smile goes a long way - I offer a kind word when I think someone needs it - we are big on the please and thank yous in our house - I try to instill the importance of helping others. And today karma has paid me back in the most wonderful way.
I am typically a positive person, I look at things with humor but some days it's hard to keep that frame of mind. This past week was especially hard - Tommy being in the hospital and waiting for word on his MRI scared the hell out of me - it brought me back to the day he was diagnosed. He looked so little and scared in the hospital bed. I was holding him when he was waking up from anaesthesia and once he was awake I didn't want to put him down. I wanted to be able to take it all away. Not getting much sleep between keeping his blood sugars in the normal range and just replaying the weekend in my head left me feeling overwhelmed...it was a rough week. Then today I opened my computer and got the most amazing email. In the fall I had a had a student that during the semester found out she had cancer. I worked with her in handing in school assignments around the tests she needed to have done and tried to email her to check in on her when she wasn't able to attend class. Since class has ended she has popped in my head a few times because I had wondered how she was doing. She was so committed to finish the the semester and do well in the class - I was amazed by her. So today I received an email from her and this was a small part of it:

"I want you to know how very much I appreciate your compassion and everything else you did to help me during my most vulnerable moments. I'll never forget you and wish you  every success in both your personal and professional life. .It's my belief that God puts people like you in specific professions/positions for a reason.  You probably will never know what your reaching out to me through your last email meant to me, but you literally saved my life! Thank you!"

This completely blew me away. Talk about good timing! I am going to print and frame this email to remind me that there are everyday angels everywhere. I may have been hers in a time she needed it but today she was mine. She's about to start her second round of chemo and she thought to take a few minutes and email me. And although not having sleep is rough it can't even remotely compare to what she's going through. Her email lets me know that Tommy is going to make it through this and all that he goes through - he is stronger then I give him credit for - and I will be there with a smile and a hug when he needs it. Her strength and positive attitude has lifted me and that overwhelming feeling is gone. Don't you love karma?

Never Brag

As I sit in the hotel in Hershey I am reminded of something I always learned from having babies: you never brag when they sleep through the night  because it will backfire on you. It happened with each of my kids, I would be so excited they slept I would tell the world and that same night they would be up. So you would think I would learn. Apparently bragging about a sleeping baby holds true for good blood sugar control as well. As I packed for our yearly trip to Hershey I worried about guessing how many carbs each meal would be. Dining out is difficult with three kids as it is but during the ciaos you also need to estimate how many carbs Tommy has eaten and hope for the best. So the days leading up to our trip caused me some stress. Tom is really good with estimating because he's had lots of experience but I'm new at the guessing game. So I thought ahead, I packed a measured out breakfast for each day so we would know that one meal would be accurate and we'd start the day on a good foot. Saturday went perfectly ...all good blood sugars...I was was so happy. By Sunday at lunch with more perfect numbers there were high fives exchanged. We had this! We were awesome! Dinner was going to be easy because Tommy wanted the same thing as the night before. I was so happy when he said that because I had written down everything from the prior night...yippy! Then they brought out the ice cream...now I know what you're thinking ...the boy has diabetes what are you giving him ice cream for. At home we have sugar free ice cream but it was his birthday and we wanted to be able to sing. So back to the ice cream - it looked like there was more than the night before so we adjusted his insulin accordingly. His pre bed number was on the boarder between giving him a 5 carb and 10 carb snack and we opted for the 10 because we didn't want him to go low and after all we have been right the whole weekend. Well we were WRONG! As per my diabetes mom contract I set my alarm for 3 am to check him just to make sure things are good and I found out what bragging got us. His blood sugar was 343 and his ketones were .9. Ugh. Ok what do you do...well 2 things bring down ketones and that is drinking and insulin. I had Tommy consume 50 carbs and drink lots of his juice. I gave him his insulin and now I sit and wait for all of that to go to work. It's peaceful to watch all the kids asleep, wonder what they're dreaming about, hoping in a few hours when they're up they will be kind to their very sleepy mom. I'm glad we are going home today. The kids miss their regular routine and I miss my kitchen scale and all my nutrition labels. I've learned two things on this trip: my daughter is old enough to go alone on a ride and you should never brag about good blood sugar!

Everyday Angels

I believe people are brought into your life at the exact moment you need to meet them. This became very clear to me the day we brought Tommy home from the hospital after his diagnosis. I wanted him to feel like himself, I wanted him to know he wasn't "sick" so when I needed to get some things for him from shop rite I offered for him to come along. He was so excited to get out and shop rite with Mom is always one of his favorite outings. So we made our way through the aisles finding his favorite things but now sugar free. He was happy he could still have chocolate milk and ice cream - things he thought he'd never have again. We even found a sugar free "juice" (also known as crystal light) that he might like. Our everyday angel appeared when we were checking out. Tommy being Tommy was chatting with the man ringing up the order telling him he was going to get sticker when we were leaving etc. Tommy started to play with his hospital bracelet that I had forgotten to cut off when we got home and just said casually to the man, "I have diabetes". The man's response "me too!" then he asked "do you check your blood sugar?" Tommy told him I checked it and told him he was at "Valley" (which is what he called the hospital) and that he was getting some new juice to drink. The man still ringing up the food talked to him like it was nothing - like all kids he meets have diabetes and I kept bagging and just listened. When I was paying the bill the man told Tommy his daughter has diabetes and she got it when she was 4 too. Tommy said "cool!" and he and I both smiled. I wasn't happy that his daughter had diabetes but I was so happy that he shared that with us. Tommy talked about the man the whole ride home. That he had diabetes like his Dad and his daughter had it like him. He wondered if she went to Valley too. It was the first thing he told Tom when we got home. What was the chance of that man being at the check out lane I picked on that day - I guess he was meant to be our angel that day. It let Tommy know he wasn't alone, not the only 4 year old with diabetes and it let me know Tom and I weren't alone, there was other parents out there going through the same we were.

Just recently I found another everyday angel. At the walk-a-ton for the JDRF I told Tom how much I liked one of the team's t-shirts they had made for their walkers. The back said "I walk for ________" and each person wrote in who they were walking for. We happened to be walking behind the parents'. I kept looking at the shirts "I walk for my daughter" and it was both sad and uplifting to me. I was sad because I realized there were so many parents, like us, with a young child dealing with this and I feel for all of those children. I was also encouraged because we weren't alone and if they could do it so could we. I started talking to the mom toward the end of the walk and found out she too had 3 kids but her middle child was the one who has diabetes and all her kids were about the same age as mine. The little girl was diagnosed when she was 11 months and now is almost 2. She showed Tommy her pump and he was amazed she had one and was even more shocked that she was little like Allison. Tommy made his way to the bounce house and I exchanged information with the mom. Every meal since Tommy came home from the hospital I felt like I was the only in the world juggling this chaos and it is comfort that there is another mom in the same boat as me. On the bad days I think about that mom and her bubbly personality - taking things in stride and I take a deep breath and do the same. At a walk with thousands of people and I meet the mom who is in a sense, me....what are the odds?

Of course my 3 everyday angels who are a consistent source of love and happiness are happily sleeping upstairs.

The Day of Diagnosis

The week leading up to Easter was a busy one. I was preparing for Easter, I took the kids to have their pictures taken wanting one last shot before our family expanded. I was also planning for Brady's arrival filling his closet with clothes he would need, cleaning bottles, buying all the things you need to fill Easter baskets and our home for a new baby. I did notice something in our crazy days - Tommy's thirst and his need to go to the bathroom EVERYWHERE we were. I now know where the bathroom is in just about every store we frequent. Then I noticed something that had never happened before - Tommy was having accidents. I had no idea what was going on. As it got closer to Easter his thirst had gotten worse he had gone from drinking 1 or 2 cups of juice and water to drinking that in less then an hour. I started giving him just water and figured we should make a trip to the doctor next week. His iron had been low in the past and I had wondered if that could have come back and been the cause but in the back of my mind and a thought I never said out loud - I wonder if he has diabetes. I was afraid if I said it I would be true.

So Easter weekend came and went and I had to co-op at his school on that Monday. Tom called the doctor and got Tommy an appointment for after lunch so we could get to the bottom of this problem. I prepared Tommy he may have to get his finger stuck and we brought a "fun" band-aid with us just in case. When we got to the doctor Tommy got to do the thing he found the most funny at his physical in December, pee in a cup. So he was having a good day - alone time with mom and a peeing in the cup moment at the doctor - he was happy. We waited in room 4 for the doctor. She came in and said Tommy had a lot of sugar in his urine and we had to go to the hospital. I asked if she thought he would need to stay and she said yes, probably for a few days. I didn't know what to say or do. I knew I couldn't be upset, I didn't want to scare Tommy so I went into Mommy mode.

I was glad Tom was home with Allison but I needed to find someone to come take care of her so he could come with us and I needed to pack for the hospital for Tommy and I. The ride home from the doctor was a blur. In between calling people to find someone to come to the house I was trying to explain what was about to happen to Tommy. How do you tell a 4 year old they need to stay at the hospital? I tried to be direct (because that works best with him) and let him know where we were going and why. I told him the doctor found lots of extra sugar in his body and we needed other doctors to look and find out why. I told him we would go to the hospital just like the place I had Allison and we might have to stay a few nights. I let him know I would be with him the whole time. He said ok and was excited about our "field trip" as he called it and we went home. I called Tom ahead of time to prep him - it allowed him time to process it all before we got there. I was trying to be as positive as I could because I didn't have the option to be upset at the time.

When I got home I did the best I could to write Allsion's schedule down and take out her food for a few days and make sure her bottles were ready. I packed for Tommy and I making sure all his favorite stuffed animals were with us. We arrived at the hospital around 4 and were taken right to the peds ER. At first they didn't do much, we waited, they asked questions and would stop by every once in a while. It wasn't till an hour had passed and began to think Tommy should eat that we starting asking what they were going to do and why we were waiting. As it turned out they were waiting for the endocrinologist to get there to admit him. Once they had their orders they put the IV in and took blood. That is when Tommy realized this wasn't a fun field trip. He was scared and I kept wishing I could take it all away. They took him to his room and he perked up a bit because he liked going for a ride in the wheelchair.

When we entered his room Tommy spotted the stuffed dog on the bed and was so excited to get a new friend. I saw the glucose meter and lots of other supplies we would be learning about. I took a deep breath because up until this point no one said he had diabetes and it was becoming very real. The nurse came in and explained the doctor would be in when she could. The doctor arrived at close to 10:00 pm - Tommy was tired and hungry - he just wanted to eat and go to bed. The doctor was so nice and kind and Tommy took to her right away. He was forgetting a bit about the IV and was enjoying the extra attention he was getting from everyone. The doctor began talking about the different kinds of insulin they use for kids Tommy's age, she was throwing around terms like carb coverage and A1C and I felt like yelling - are you sure he has diabetes - Tom was feeling the same way. She assured us the diabetic educator that was coming the next day would help us figure it all out and she would be back the following day. She left and Tommy got his first shot of Levemir and his blood tested. There are no words to describe what I felt and what Tommy must have been thinking. I was all happening so quickly.

Tom went home and I sat with Tommy till he fell asleep. I looked at this little boy asleep in the big hospital bed and I cried. I cried for him and how his world was changing, I cried for Allison and her first night without me, I cried for Brady who I would be having in 2 months and thought how will I have time for a newborn, I cried.

I am grateful though that our diagnosis story isn't like some where the children are very sick and need to be in ICU. I am grateful it was caught early and Tommy, although cranky, was in good health. You have to count your blessing where you can find them.

Sure I can Juggle

I never saw myself without a family. Even when my husband and I first started dating in high school I knew he was meant to be my husband and I knew I wanted a family. He always said he wanted 6 kids but after the first he scaled down to 3 or 4. HA! So I knew our house would be filled and our lives would be busy. I'm good at multi-tasking - I like having a lot to do. In school I always signed up for lots of activities and when I started work I worked jobs from home and started to teach. When Tommy was born I found having a baby is a new kind of busy. Your life becomes all about them and I loved it. After a few months we had a routine and we felt we'd be ready for baby #2 after Tommy turned 1. God had other plans and we waited for 3 1/2 years to welcome Allison. It was an adjustment to have a newborn and one in school. My days revolved around feedings and Tommy's school schedule. Some days were harder then others. Some days I woke up tired but as I discovered my sleepy mornings, afternoons, and evenings had more to do with being pregnant again than having 2 kids. It took a while for the shock to wear off and for me to come to terms with having a 4 year old, 1 year old and a newborn. How was I going to get anything done at home? How was I going to go to the store for food? How was I going to drop off and pick up from school? I stressed during feedings thinking about how was I going to be able to feed 2 children bottles at once? How can I give each of them the time they need? So many how, why, and whens entered my brain everyday. All those questions faded away on April 25th. Sitting in the hospital listening to the doctors after Tommy was diagnosed all the other questions just went away. It all seemed so silly to worry about now. The goal to learn all I needed to know to be able to bring Tommy home was all I was concerned with then. The day we came home from the hospital and I didn't have the nurses or the diabetic educator to turn to and make sure I was doing things correctly I realized my juggling act just got a bit more complicated. Tommy, who took pride in taking his lunch out, eating and cleaning everything up himself needed mom to look at what he was going to eat then mom needed to see what he had left on his plate. Going in the fridge and grabbing a juice box or grabbing a snack on the way to the playroom stopped. Luckily he adapted well and my juggling improved. As the months passed I found it easier to cope with the day to day strains of having so much responsibility.  Going to shop-rite with 3 kids isn't so bad and I find carrying 2 kids up the stairs to pick Tommy up is just a work out squeezed into my day. Meals are my toughest challenge and require the most amount of my juggling skills. Tommy needs his blood checked, he needs his lunch, and his insulin, Ally needs her lunch and Brady needs a bottle. It all sounds so easy but in the moment when you are adding carbs and Ally is asking for her milk and Brady is crying for his bottle it isn't so easy. I feel like I've claimed a victory for all moms when lunch is done. It's all over so quick and am thankful Tom is home to help with dinner. I live meal to meal - if I think about the whole day it's overwhelming. So can I juggle - sure - I've even learned to give insulin while feeding Brady a bottle - now that's talent.

Meeting our 4th child

In 2006 we welcomed our first son, Tommy. It was a long pregnancy and the last few months I spent on modified bed-rest. We were concerned when we discovered he wasn't growing anymore and 3 weeks early I would be induced. The induction didn't work and after 3 days of labor he was delivered via c-section. At 5 pounds and 14 ounces he was tiny but he was the cutest baby I had ever seen, he was perfect. At only a few hours old we found out his blood sugar was low and would need to be in the NICU for a bit. A bit turned into a few days. His blood sugar came up quickly and the IV only needed to be in for 2 days but he wasn't eating well and couldn't find a formula he could keep down. His low blood sugar was unrelated to his current diabetes but now I see it as foreshadowing of our current state. We went through many things with Tommy and for much of his very early days he was in pain due to acid reflux that required medication and special, prescription formula. It was a hard time. Our first baby and we had no parenting experience to rely on. At a month old he developed psoriasis that covered his face, head and any folds in his arms or legs. Our beautiful baby boy now covered in dry, red patches. I look back at pictures of this happy baby smiling and think thank God it wasn't painful and I'm thankful I didn't see how bad it really was. Jump ahead 3 years - so many changes - no more acid reflux, no more psoriasis, nothing - he was perfectly healthy. His perfect health came in great timing, we were about to welcome a baby girl. Allison was born in June 2010 and life was great. She was born on time, she was healthy, no worries. We were busy but who isn't busy with a 4 year old and a newborn! Our life took another turn when Allison was 4 months old we found out we were going to have another baby! Brady was born a year and a day after Allison. But before we could celebrate the birth of our son Brady we had a shock that nothing could prepare us for, we discovered Tommy had diabetes, and so our 4th child was born. I think of Tommy's diabetes as another person in the house because it has it's own needs and time table. It has it's own doctor's appointments and special things to buy for it. Diabetes is another person that lives in our house and it's accepted but I do wish I could send it away.