I'm bound to piss some people off with this post. And I don't mean too, I was there 5 years ago. When my first child was diagnosed with diabetes I thought there was nothing worse. My life felt over. Everything I wanted for my baby blew up in smoke. I had lots of people tell me it could be worse. I didn't buy it. I hated them for those words. Since then, I had a second diagnosis. I have learned a lot. I endure a lot. My kids endure much more. I would do anything to take this away from them both. I would give my own life. I would endure 6,000 shots a day, you name it. I would give anything for them to live a normal life. To eat and not have to worry about their numbers. To have their precious bodies produce insulin like the rest of us. However, I have strived to teach them, we OWN diabetes. Diabetes will never own us. I hate the words I'm ready to speak however it's the truth, it could be so much worse. I am so thankful diabetes is all we have to deal with...is it easy? Hell no, but I will take it. So will my kids. It could be so much worse. I am not making light of the sleepless nights, the never ending worries we experience, however I do believe we have to make the best of our situations. We have to teach our children to OWN it. I hope to instill in them that we got this and any thing that  comes our way!! Remember life could always be worse...try to remember the positive and instill that in your children.

Slowing Down...

I am not one who believes in new years resolution. However, I have realized something the last few years...I need to slow down. I need to breath. So while this isn't my new years resolution, it is a promise to myself. I look at my children, who have taught me so much, in the short time they have been in my life. I need to slow down. My children have taught me so much as far as strength, courage and to just be brave. Most of all, they have taught me to stop and take it all in. I am so guilty of rushing them, for the fear of always being late. I find myself constantly saying to them, hurry up, come on I don't want to be late, would you just move already. It's time to stop all of that.

I am making a promise to myself to "slow down" this year. To take it all in. To look at my surroundings, enjoy the moment, stop worrying about a clean house, stop worrying about the next thing on my list. My children have taught me that once in a while you have to stop and put everything on pause and realize there is so much more around you than the "to do lists" that are never ending. I'm asking all of my friends to slow down, breath and just spend time with your loved ones. Tomorrow is not promised. For any of us. Stop rushing life, enjoy the moment and while you are at it take a moment to lift someone else up, after all its the greatest work out ever. Don't waste this year. Spend more time loving those around you. Stop rushing your children and instilling in them rush, rush, rush, hurry, hurry, hurry. They experience that as it is. I will take my own advice and stop rushing my children around. I am going to live life, enjoy life and savor every moment. As tomorrow just isn't promised. Take time to slow down, enjoy the precious moments with your loved ones. And most importantly, if your kids ask you to play with them, stop saying you are to busy, just stop and play with them. Look through your child's eyes and realize the wonder of the world as they see it....priceless

Diabetes is a roller coaster ride...there is no direction on which way we are going next, or where we will end up. There is no rhyme or reason on where we land. One thing is for certain, it is a life changing experience. I still remember when my son was diagnosed at 2 years old and when my daughter was diagnosed at 11 months old. Both rocked my world...each one very differently.

We have been living with diabetes now for what seems like an eternity. Every time I think we got this something surprises me. Something takes me for a loop. Then I settle back in...I try to get comfortable again...

I admire what my 2 type 1 children endure daily. I admire what my non type 1 son endures daily. They are an amazing team. I have never seen such small children deal with such big issues.

Seeing what I see daily makes me realize how precious life is...I don't make a big deal of diabetes because I will not let it define my children. However, it does consume a huge part of our lives. It has to, even though we don't want it to, bottom line is it does...

People have constantly told me diabetes won't hold us back. I agree with that to a degree, but I also will disagree...

Diabetes is always interfering...

it can make us late for things when counts are dangerously low or high...because taking care of them comes before anything else on our agenda.

it can keep me from sleep when I am already exhausted from the day...because their safety is my top priority.

it can keep them from sleep when I am force feeding them in the middle of the night to keep them safe.

it does keep us from being invited to outings because we may cancel at the last moment due to things beyond our control.

it has caused us to lose friendships because our life is different now and it's hard for others to understand the constant demands.

it can keep a parent from ever getting a break because no one wants to learn or understands how to care for these children.

it can keep from a child taking a simple test at school or sideline a child from a sporting event.

So, does diabetes hold us back...it can...

Without question, it can and does...

But I refuse to let it define my children.

They may have diabetes, but I will never let diabetes have us.

The monster in my life…

So this weekend marks a year since my baby Camryn was diagnosed with Type 1 Diabetes. It leaves me with a flood of memories and regrets…Camryn was 11 months old and my third child. I already had my oldest diagnosed at the young age of 2. I knew the signs, I knew the symptoms. Yet, as we vacationed as a family and Camryn didn’t seem like herself I couldn’t help but think she just had a stomach virus. She was very lethargic and throwing up. We continued on and tried to make the most of our family vacation. She just wouldn’t perk up. She hung tough and carried on, but I never saw it coming. I guess more than anything I wouldn’t let myself. How could I have another baby diagnosed? On the way home she did nothing but sleep, we got home and she continued to sleep. I thought what a sweetheart letting mommy unpack. I woke her a few times and she drank a small amount of milk and held it down. Figured the next day she would wake up and be at home and be thankful to be in her familiar place. The next morning she didn’t seem very alert. My parents came to visit since they hadn’t seen the kids in a week. My mom was immediately worried. She thought Camryn seemed dehydrated and out of it. The light went off…she was lethargic for over 5 days and not really eating or drinking…we couldn’t get her attention. I was in denial. Thank God my mom spoke up and said we need to check her finger. I knew what was coming and still denied it…I went about my duties as a mom, ignoring what was coming. I felt sick. Really sick. Finally my mom wouldn’t let me proceed. She said get Darryn’s meter now and check her finger. Still in denial I claimed she would be low because she hadn’t really ate in days. I finally, reluctantly, got the meter and slowly checked her finger…waited for the number…I felt like puking. She wasn’t low, she was very high. I knew what was in front of me. I knew this walk…walked it before. I remember that day like it was yesterday. I had another type 1 diabetic. I couldn’t think straight. We of course went to the hospital and were life lioned to Penn State Hershey Children’s Hospital. I knew it wasn’t good. But hearing the doctors say she was in severe DKA (diabetic ketoacidosis) and some make it and some don’t. Giving me the statistics…I was numb…how did I let this happen?

 

 

  Guilt flooded me. Fear filled me. What did I do? How did I not see this? I have experience at this monster. It has lived in my home for almost 2 years. How did I miss this? What did I do to this innocent baby girl? She is still such a baby and I am to be protecting her. After all, I am her momma.  I saw the signs with Darryn early, before he ever even got sick and I knew nothing about type 1 diabetes. How did this happen to her?

We spent the next few days in Pediatric ICU and it was touch and go. However, I saw an online DOC (diabetic online community) and all my family and friends lift this baby girl up in prayer. It gave me strength when I had none left. I saw pictures of her posted by some I never even spoke to. They all rallied together and prayed hard. It was everything we needed. So as we approach her year anniversary all I have are heartfelt thank you's to so many people that were there for our family. I literally had over 1,000+ emails till we left the hospital with her. I cannot begin to thank everyone enough and I pray they all read this and remember how they helped our family and baby Camryn through a very life threatening situation. I will never forget the support and love we were given. Thank you!

 So a year later, what does this monster in my life mean to me….having two children with type 1?

  

 

It means life is different. We are always checking fingers, measuring food, counting carbs, dosing insulin, changing sites, changing pump settings, and the list goes on and on. I sometimes feel like I am in a prison cell with no life. We choose to stay home and play it safe rather than eat out and guess how to dose. We say no to a lot of things with friends because it takes so much to pack up three small children, then top it off with two kids with needles, insulin, site changes, their own food, pretty much a suitcase each time we go away, sometimes it is just more work than it’s worth.

 Then there are other times I realize that they deserve a normal life, as normal as I can give them. I find the courage and do those special things. We go to birthday parties, we go on vacation, we eat out occasionally, and we risk it. Will they go high? Will the excitement take them too low? You know what? I have to let go of that every now and then. I don’t want diabetes to rule their lives; I want them to know first and foremost they are children. They are alive and vibrant like everyone else’s children. They deal with more than anyone should have to…

Give me the strength and wisdom to let this monster in my life stay in the backseat. To not be the driver. Ever. Let this monster never have control over them. This monster may lurk at the bedroom door while they sleep, this monster may follow Darryn to school, this monster may follow us around everywhere we go, but in the end this monster will not win. I sometimes hate this monster that follows my children everywhere we go, but then I am reminded that they wouldn’t be who they are without this monster lurking. Even my only non diabetic child…he wouldn’t be who he is and how special he is without this in our lives

 Diabetes certainly requires a lot of us, as parents of diabetics and as individuals as diabetics, however remember do not let this monster win!! You or your child may have diabetes but never, ever, let diabetes have you, your babies or your life.

One day, one day, this monster will be buried. I have the faith and hope to believe as strong as the DOC is and our family and friends, we will bury this monster.

 

When Diabetes gives you lemons....

When Diabetes gives you lemons…what do you do?  Do you squirt it in Diabetes face or simply make lemonade?

I had an emotional struggle last night. It might just make the top of my list for ultimate questioning of this lifelong disease. Questioning of my sugar momma skills…I have made mistakes with this disease, after 2 years of it, it’s bound to happen. And, trust me, it has. However, last night felt like a parenting mistake…

It was a normal evening, I came home from work, made dinner, checked tiny little fingers, measured food, dosed insulin (one with a pump and one with injections). Pretty standard here. When it got to be bedtime, I went to Darryn’s bedroom to clean up and noticed his pump on the floor. I immediately got mad, I was mad that he didn’t tell me, he hadn’t been in his bedroom for hours. All I could think of was chasing highs, and why? WHY? Why, would he not tell me his pump came off??

I immediately gave Darryn “the business.” I immediately grabbed a new pump and insulin; of course there wasn’t enough insulin to fill his pump. So, I grabbed a new vial out of the fridge…more time wasted. I had to “warm” it up to put it in the pump. More minutes without insulin going into my Type 1 diabetic son…Grrrr. I was beyond irritated.

The time finally came and I put a new pump on him and checked his finger. The damage wasn’t too bad, surprisingly. However, it came to reflection time for me…

I am not a Type 1 Diabetic, I have 2 babies with Type 1…I have diabetes to a degree, but I don’t “have” it. I kept asking myself, if I was 5 years old and had something “attached” to me 24/7 and someone always at me, or even checking myself, if this “thing” fell off me, would I tell anyone??? Probably not. Why??? Because it has to get so old. It has to be tiring. I know how tiring it is for me, and I don’t have diabetes.

So, last night, I struggled. I struggled hard emotionally. I didn’t sleep much, watching over Darryn not knowing what the dark night may hold. But more than anything, I struggled if I had just made a HUGE mistake being mad at him. I wasn’t prepared for this. Hell, I’m not usually prepared for much diabetes dishes out daily. But I normally handle it with a smile, that’s what my babies need to see, after all.

I had a long talk with Darryn tonight…he did nothing wrong, I truly believe I did. For that, I am sorry, I am sad. I pray he knows how amazing he truly is, I pray Camryn knows how amazing she is, even my only non Type 1 Diabetic son, Devyn, he is simply amazing. This sugar momma will make mistakes, but she will also continue to learn from them. I’m so honored to be their momma and that I have their forgiveness and unconditional love. Children offer so much, don’t miss the opportunity to learn from them. Ever.

So, when Diabetes gives you lemons, don’t squeeze it in its face, simply make lemonade and rejoice that you have your sweet babies another day, savor every sweet sip…every sweet minute you are given.

Reflection Time...

Reflection Time…

So 2012 is coming to an end…it has been a year full of surprises…some good and some not so good. As I sit here on New Year’s Eve I have to reflect back on the year and the many blessings it has held. And the many challenges.

I felt I finally got my groove on with managing Darryn’s diabetes, at least as much as one can. I felt I was at a comfortable place, finally. I felt I had this. I would never claim to master a disease that doesn’t play by the rules, ever, but I felt I had some control. I felt I could beat this beast. I felt I could ride this roller coaster. With my hands up in the air!!

Midyear, I got some scary news, doctors were concerned my cancer had returned. I was having some issues and the toughest part was preparing myself to say good bye to my precious babies, God willing. However, the fighter in me, I just couldn’t imagine and wouldn’t stand for it. I decided to put my gloves back on and fight like hell!!! My babies need me. Almost as half as much as I need them!! I again was blessed with another blessing…no cancer in sight. 9 years standing strong!!

So, September came…family vacation…who could ask for much more. The beach, a place my kids adore and I absolutely love! We had an amazing vacation, despite my baby girl not feeling so well. I had thought the stomach bug had just reappeared. Turns out she went into severe DKA. I knew before we even entered the emergency room, she was Type 1 diabetic like her big brother. It hurt so bad to tell the emergency crew about Darryn and what her blood sugar was…knowing what her life held. It still hurts to this day, her tiny fingers at 11 months old. Stepping into Life Lion with her was tough. I cried the whole way to Penn State Hershey Children’s Hospital. I watched a baby girl, lifeless….I had to hold her as they stuck needles in her forehead because she was so dehydrated, they couldn’t find any other veins to hit. I cried my eyes out. Not again!!! Please not again!! The reality still hasn’t set in….

But what have I learned in 2012, despite all the challenges and blessings that have been given to me!!

I have realized that I can’t pull away from those that care about my family! I have learned that the DOC (diabetic online community) held me up when I had no strength left. When I was down and out and scared as hell for my baby girl to pull through, they were there. Posts on facebook everywhere you looked…hundreds of friends praying for my baby girl and my family. A ton of private messages and texts, that I never had the time to answer or respond to. It meant the world to me!! I didn’t realize it then, as she was my main focus, but they were there….doing what they do best. Standing behind anyone who needs help. Praying. Pulling for a dear sweet girl who had and has no idea how many love her!! One of my dearest friends had just lost her husband to cancer right before Camryn was diagnosed…I still say to this day, he watched over her and me. I still cherish that. Thank you, Ryan Schuhmacher!!

It has been quite the year. I have had the blessing of helping a good friend from high school watching her mom go through cancer treatments…helping her has been a blessing to me. Helping anyone is my heartfelt goal. I love seeing others smile!! It does my heart good!! As I have always said…the best workout is lifting others up. I have been blessed by some amazing friends and family that are always there for me.

So, I have so much respect for my DOC, they get me when no one else does…they just get it. I have met some of the most amazing people through this ugly disease. I thank you all for carrying me this last year!! Each one of you are amazing…I won’t attempt to mention names as I would forget someone special!!

Now, onto my non diabetic friends, you are as equally amazing!! In every sense of it!!! I know I have changed since diagnosis, and change isn’t always easy to accept! I can’t thank you all enough for your steadfast position in my life and for supporting my family!! Some of you have loved me even when I wasn’t loveable. I didn’t mean to change, but it’s hard not to. My life has changed so much, but my love for all of you has never wavered!!! I know I’m not the fun one anymore…I can’t do things spontaneously like I used to…I can’t leave my children with just anyone, matter of fact it’s myself or my mom!! And that woman gets tired too, just like me. And she still finds it in her big heart to give me breaks as much as she can.  To my non D friends, don’t ever give up on me. My love will always be there, even when I can’t find the time to tell you just how precious you all are!! My heart is overflowing with thanks and love!!! I hope each and every one of you know how much love I feel for you all!!

And to my family, I have no words to express how much your support and love mean to me!! And my children!!

Happy New Year to all my family and friends, D and non D….I love you all with all my heart!!! And beyond!! May 2013 bring you and your families love, health and so much happiness!!

The Reality of it ALL...

As I sit down to blog tonight, I am in tears. Tears of hurt, fear and frustration. The last two days for me have been hard. I have lived with type 1 diabetes now for 2 years with my oldest son and 2 months with my baby girl. But I have never had the experience of actually being a type 1 diabetic.

It started yesterday with taking the T1D4ADAY, a challenge by the JDRF, sending texts for 24 hours explaining this disease. I took the challenge, but seriously figured what could it possibly teach me that I didn’t already know. I get this disease, I really do. I do it non stop.

Well, after texts all day while trying to work, enjoy our company Thanksgiving luncheon, going to an appointment after work. I realized a lot of things. I realized, I really don’t know what it’s like to not be able to eat what I want, when I want, without carefully measuring every bite or sip that goes in my mouth…I realized that when my kids aren’t with me I can forget all the life saving meds, supplies and snacks. But my phone kept telling me I needed these things and my babies weren’t even with me. I realized I really have no idea what my 4 year old and 1 year old go through. Every time they want to eat, it’s stopping them first, checking fingers, dosing insulin, changing pumps, giving injections. Doing corrections. Waking them all hours of the morning and force feeding to treat lows. I just do it, after all it needs done. Their lives depend on it.

I really have no idea what it’s like to do this myself. These texts opened my eyes. Opened my eyes hard to exactly what this will be like for them when I’m not the one doing it all for them. It saddened me. This isn’t what I want for them. For anyone. This challenge made me put myself in their shoes…it really shattered my heart for anyone lives with this daily. The constant monitoring, measuring everything you eat, all activity you do, stress in their lives, even season changes need to be accounted for. My body produces insulin and the exact amount when needed, all factors considered. It is an exact science and works perfectly. Here I am just an external pancreas trying to take all these factors in and provide my children with the tools necessary to keep them alive and healthy. Sometimes we hit it exactly, other times we can’t get it right, no matter how hard we try. Sometimes, there is just not an explanation. It’s frustrating to me. But yesterday, I realized how frustrating it must really be for them. I can’t begin to imagine living with this disease myself. Even though I live it every day, 24/7 nonstop for them. What an eye opening experience. I even had some dear non type 1 friends take the challenge. I so enjoyed their texts and communications saying they just can’t imagine what we deal with day in and day out. But after the day, I feel the same. I just can’t imagine and I really try. I would do anything to take this from them and carry this burden, ANYTHING!!!!

Today was a new day, my texts stopped at 3:30am. I went back to normal. Left overs were put out at work and I went back to eating and grazing all day, never giving it a single thought that my babies can’t and won’t be able to do this. I spent my day at work, away from diabetes for alittle while anyways. I went home and picked up Darryn for his routine 3 month appointment. That dreaded day that I take him for his A1c test. They draw blood every 3 months. When he was diagnosed at 2 years old it was alittle easier as he wouldn’t throw such a fit. He’s now 4 and he totally gets it.

We pull up and he says, “Hey, I stayed here before and this isn’t Walmart.” My response, “Yes, sweetie you are correct, it isn’t.” Immediately walking in he starts. I don’t want this, they aren’t taking my blood. See, he gets this, he knows what happens next….and so do I. The older he gets the harder this seems to get. I register him, he continues to play with his train and repeating to himself he won’t do this. They won’t take all his blood. We get called back to the lab, he throws himself on the floor, he throws a royal fit. I’m positive at this point everyone in the waiting room and the employees think I’m the worst mom in the world. Why can’t she control him, what is his problem….I see it, I get it. I’m just as embarrassed. I have been here before, so has he. I finally drag him back to the lab and fight him to get on my lap. He starts kicking, he kicks the nurse and myself till I lock his legs into mine. Immediately before I’m ready he throws his head back into mine and hits my nose. So, I grab his head and other arm and lock them as well. The one nurse has his arm they are pulling blood from, the other nurse is preparing to take his blood. Tears start to stream down his face. I hold mine back, after all I am the strong one here. And I have to be for him. I am for him!! They pull blood to fill the tubes, I watch tears stream down his face, as I do every 3 months. But when he is done, he jumps off my lap and proceeds to tell me I am a mean, mean person. That he doesn’t love me anymore. I hear this over and over again. It stings! It hurts! Its real! For him and for me! I remain strong, I fight him another time to get his coat on, he refuses. I actually have to start leaving without him to get him to follow. It hurts because I just want to hug him and give him love. He finally comes outside with me and proceeds to our vehicle telling me I am so mean and his Daddy never does this to him. That I am the only mean one. It cuts deep. I get him into his car seat proceed to get in and drive away. I can’t take it anymore, I start to cry myself. I figure it’s dark, he can’t see. He hears me, he asks me repeatedly why I’m crying. It takes awhile to gather my words…we talk on the way home, both of us crying. Here I am, not a diabetic, trying to reason with and explain to a 4 year old why these tests are so important, why we do so many of them. I go on and on, I try to explain to him how I would take this away in a heartbeat, that I would do it for him, in an absolute millisecond!! No matter the wording I use, he really doesn’t get it. And that hurts me even more…why should a 4 year old have to get this?? Something so adult like, he shouldn’t have to get it. Hell, I shouldn’t have to be explaining it to him. We get home and life goes on for him. He’s happy. Mom is sad. Heartbroken, saddened and just trying to make sense of it all. That’s one thing I will never get, I can’t make sense of it.

I love my children with all my heart and I am a strong woman, they are strong kids, but I realized in the last two days that we all have breaking points….we all have weak moments…and it’s ok. I am beyond thankful for the friends and family that lifted me up the last two days and reassured me I am doing all I can. We are thankful in this beautiful month of November (the month of thanks) but I won’t deny these last two days just have me in a hurt and weak state. There are moments I think everyone needs a break from life…unfortunately, the D monster doesn’t know a vacation, a break or even a good nights sleep.

So, what have I realized in the last two days…my babies are strong, they are brave, they are courageous…they have and will continue to teach me so much. It’s hard to realize they have to grow up so quickly, they take on more than they should…but one promise I can make and absolutely keep for all the type 1 diabetics out there I won’t stop till there is a cure. HOPE. BELIEVE. FAITH.

Tomorrow is a brand new day, I will release blue balloons for all those that have fallen to this disease and all the “sweets” still fighting, for all the parents and care takers…we will release balloons for us all<3