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.