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

2 Years STRONG....

Today, two years ago, our lives were turned upside down and inside out. It still hurts to go there, but I will. I have to. I don’t know what it’s like to be a type 1 diabetic, but I do know what it’s like to care for babies with it. It has changed our lives, it has changed me. I think of numbers, even in my sleep.  My son, Darryn, diagnosed at the tender age of 2 years old seems to not let it slow him down. So, this morning as I woke and relived every single minute of that bittersweet day two years ago…I wonder why it has changed me so much. Why it still hurts so much? I guess because I am realizing more and more that he really can’t understand at the age of 4 now what his life will really hold…what it will really mean. We have done this now for 730 days and it feels like an eternity! He has endured over 1,900 injections, over 130 pump changes and over 9,000 finger pricks…it hurts to see these numbers…it hurts to realize this is simply really only the beginning. I get it, but does he?

People have said, numerous times, “be thankful he is so young, he will never know any different.” I struggle with that, will he really? When everyone he goes to school with can eat what they want, when they want…when they can drink something and not think twice about it…while everything, every little thing he consumes needs to be accounted for and he needs dosed for it? When his little brother can eat and drink whenever and never think twice about it. I am sure my little man (yes, I say man, because he has had to grow up simply way too fast) is way smart enough to understand he is different. But at the end of today, I sit back and pray he understands that he is different and different is ok!!! He is strong, he is brave, he is beyond courageous and I know that Darryn is going to make a difference in the lives of others. While he may be different, he can be anything he wants. Diabetes has a part of his life, but I can see in his sweet eyes, it doesn’t have him!!!

I sat back tonight and I watched my babies play, all three of them. Play like there is nothing out of the ordinary in their lives…I hope and pray life is always this sweet.  But in the end I know alarms are set, children need checked, the D monster never really leaves us alone, even on good days. The monster is always around the corner…waiting and watching.

While I want absolutely zero pity for myself or my dear sweet children, I do want to do my part raising awareness and if it helps one family then I did my job. People may feel it consumes me, well, it does!!! It has too!! It’s my babies safety, any mom wants nothing more than to protect her children…to fix whatever it is that hurts them….I simply can’t do that, no matter how bad my heart hurts to do it.

I may be a very loud voice for him and his dear sweet baby sister, who was diagnosed just 2 months ago at the age of 11 months, but trust me…I won’t always have the voice. These two are amazing and I can guarantee they will make a difference in whatever they do in life. All I can do for now is give them the tools and knowledge. I know someday I will have to give them the freedom to do this their way, it scares me to death, even though that is years away.

Humbled beyond words...

My heart is heavy as I write this, I decided to go through my emails and clean up that space. I have to say that dreaded day, September 8^th, haunted me once again. I knew that Camryn was being prayed for and our family was loved…after all, that is the only thing that pulled me through that day. But I had NO idea the magnitude that she impacted the DOC (diabetic online community), family and friends. There were hundreds of emails, tags, posts, texts and private messages that I didn’t even realize. I am beyond humbled. I am lost for words…people all over the world heard of baby Camryn being in severe DKA and diagnosed with type 1 diabetes at 11 months old and passed the word on for prayers and good thoughts to be lifted. I in no way, shape or form could respond to all, but it wasn’t till tonight that I realized all that I missed…so many beautiful people, some we know very well and others I had never heard of, were all about praying for her pulling through. You are ALL angels and I apologize that at that time I couldn’t respond…I thought maybe I could respond tonight but after reading hundreds of outreaches, I realized it would be impossible to respond to everyone. But I wanted to, that is who I am, you all have touched me beyond words. I cried several times tonight trying to realize the depths of love from each of you!! I am touched and even though I couldn’t respond due to the urgent nature of her at the time, some way each and every one of you not only pulled her out of severe DKA, but gave this D momma strength she didn’t even know was inside of her. I just wanted to say thanks from the bottom of my heart!!  I knew we were a part of an amazing support system but I had no idea the depths of it!!! I just wanted to say thank you to everyone for including us in their prayers. She got really sick on our family vacation and today as I pull those pictures up I am saddened beyond belief…vacation is to be the happiest time of the year, but some part of me realizes that I am so blessed to have what I have and each day when I see my three children and they smile their gorgeous smiles at me I am reminded so tenderly how truly blessed I am. Life doesn’t promise easy, life sometimes isn’t fair, but I realize that we are given strength even when we feel the very weakest and most vulnerable.  I couldn’t make it through this storm without my family and amazing friends that keep us in their daily thoughts and prayers. A HUGE thank you to all!!

Here we are again...

It was a simple Saturday, I noticed my 2 year old son, Darryn, was drinking more than normal. He just couldn't seem to quench his thirst. I remember looking at my husand and saying, "something just isn't right." I texted my mom for advice and explained the unquenchable thirst. She said to simply keep an eye on his thirst and his weight, make sure he isn't losing weight, that these are signs of diabetes. My mom was in the medical field so immediately I weighed Darryn. He had not lost any weight. I felt good. I knew nothing about diabetes but was sure my son was just thirsty. I proceeded through the weekend and took him to daycare that Monday, I asked questions about his thirst and they told me I was overreacting. I went about my week...still worried but kept reassuring myself he was fine. That following weekend we watched everything he ate and drank, making sure his intake of sodium wasn't too high, to explain the excessive thirst. His thirst still couldn't be quenched. He started soaking through diapers every hour. I kept weighing him and realized while he wasn't losing weight, he had grown in height a lot and never gained a pound. I took him back to daycare on Monday and again asked if anything was out of the normal with him. I was told again that I was overreacting. That evening I picked Darryn up and he soaked diaper after diaper, I swear we went through 5 pair of pants that evening. Finally that Tuesday I got to work and called the pediatrician. I explained what I was witnessing and they requested to see Darryn, still thinking this was something simple I made the latest appointment as possible. I got off work and picked up the boys and headed home. I did nothing more than drop of Devyn with his Dad and headed to the doctor's office. What I didn't know is that life would never be the same for us again. We got called back and immediately they tested Darryn's blood with a meter, the reading was so high they called a nurse in and tested her finger to be sure the meter was accurate. I am still dumbfounded at this point. Next thing I know they are testing his urine. Point blank I was told your son is a Type 1 Diabetic, also known as Juvenile Diabetes. My first question, "will he grow out of this?" I was simply told no. The only way he would get rid of this disease was for a cure to be found....I heard nothing after that...not a word.Our pediatrician escorted us to the local hospital, where we were admitted immediately. It is still a blur...I really couldn't wrap my head around it. I had no idea what was happening, but I knew it wasn't good. All I could do was cry. All Darryn could do was wrap his loving arms around me and tell me everything would be ok. How is it that I have no clue what is going on or what life had in store for us, but there sits my amazing 2 year old reassuring me???? That alone broke my heart!!
The days after diagnosis there were a ton of specialists that visited our room, always asking what questions I had...how could I have questions about a disease I knew nothing about??? I felt helpless...so lost....
After a whirlwind of classes and training to be able to care for our baby, we were finally sent home. I had no clue what I was doing or how I would give my baby shots and poke his tiny fingers repeatedly. I was beyond shattered and heartbrokened. After all, I have always been scared to death of needles. How am I to do this??? I lost my daycare in the middle of our hospital stay, as she didn't want the responsibility or the liability of caring for Darryn. So, we are finally home and I can't go back to work because I have no care for my boys. Life was a mess. Simple. A mess.
I had a great deal of supportive friends that rallied behind us, between coaching me on how to give shots and looking for daycares. After 3 weeks I found a daycare that promised to do their best in caring for Darryn. It was hard to let him go but I trusted my gut and went back to work....I cried alot. Anytime I looked at pictures of Darryn "before" I bawled like a baby...where did my healthy child go??? I researched diabetes and searched desperately for a "cure" I was determined this disease could be cured. I couldn't help but continue to ask, "why?????" "WHY?????" "Why him????"
After a year of injections and pricking his tiny fingers I started to research the insulin pump. It was a struggle to put something on the little body of my son....I struggled if he would accept it or if people would look at him differently. I hated it.
We ended up going with the OmniPod after months of research, the first few weeks I felt like we were diagnosed all over again. It was rough, but we worked through it.
Life became our "normal" again. Life wasn't easy but it was our life. I became adjusted. Darryn became adjusted. Poor Devyn who wasn't type 1 just sat back and took it all in. He made himself content while we dealt with Darryn.
So to catch you up, Darryn has been on the pump now for about 9 months. We went on a family vacation and I did what any mom would do, I overpacked diabetes supplies, I mapquested the local hopsital (for an emergency), I mapquested the local pharmacy, just incase I forgot something. Vacation went well, I realized I overpacked.
Even as we came back to the condo for naps, I laid on the patio to sunbathe and had a revelation...this was doable. I had several women, from waitresses to passerby's on the boardwalk tell me that I totally had my hands full with 3 little ones all under the age of 5. But laying there in the sun, I realized that I didn't want my hands to be anything but full, otherwise I wouldn't have my babies. And I couldn't imagine life withouth them. I even went as far to think to myself that diabetes is hard, but its ok. Yes, I have to pack extra things to leave our condo cause diabetes never takes a vacation...but I realized this was all ok. I was comfortable, life was ok. It would be just fine. We could do this.
But as the week went on, my baby girl (11 months old) took a turn for the worse. She wasn't herself, she wasn't enjoying vacation. She wouldn't do anything other than lay around, she is usually a busy body...very nosy. This worried me to the point of paging her pediatrician. They told me as long as she was responsive just finish out vacation and if she wasn't any better by the weekend when we got home to call. I went with it. Everyone in our house had the stomach bug the week before vacation. I just figured with her young age she wasn't able to fight it like the rest of us.
Vacation finally came to an end and we headed home. She slept the whole way, she slept the whole afternoon into evening once we were home. I kept thinking she would realize we were home and come around. That next day she wouldn't drink or eat anything, her Mimi came to see the kids and she was unresponsive...I started to count the days and realized she was not herself now for 5 days. Something didn't settle well within me...I told my mom I should check her with Darryn's meter to be sure, but then moved on to do something else. Maybe it was the denial in me, but I didn't want to face what was staring at me...I was scared. Fear started to set in. My mom finally demanded I take the time to check her. She was 308, I immediately paged Darryn's Endo. They told me to recheck her in 2-3 hours. Within a half an hour my mom couldn't get her to respond to anything. I decided she was going to be checked in an hour. She was 399. I knew at this point what I didn't want to face. My mom and dad took the boys as I paged the doctor again. He told me to rush her to the local ER. Which we did. God bless I had her numbers and the experience I did, because she was rushed to a bed immediately. Within an hour we were being rushed by Life Lion to Hershey Children's Hospital. Everything was a cluster...all I could do was cry. She was severly dehydrated and they couldn't get labs from her, even calling in the best of the best to do labs on her. They ended up having to take blood from a vein in her forehead. Its a sight I will never forget. It still haunts me. She was diagnosed with severe DKA (diabetic ketoacidosis) which is a life threatening condition. For over 24 hours she was in severe DKA. I struggled with how, with all the experience I have with this disease, how on earth did I not rush her sooner. I was told by several specialists that had I not got her there sooner, we would have lost her. She was very near to a coma. So, today I struggle with how on earth I missed the early signs...Even with experience of this disease, how did I miss this??? It's easy to overlook things. Please know the signs, so many people know nothing about Type 1 Diabetes. I want to change that, I need to change that. Sorry this was so long, but I thought it was best to give you a background on our family. I will do all I can to help others through this journey. I am struggling emotionally now that we have been home a few weeks. It hurts! I look back at me always asking "why" with Darryn, well I have my answer now, if it wasn't for his diagnosis we for sure would have lost his baby sister, Camryn. He is not only my super hero but her guardian angel.