Hard shell

I have come down with this horrible case of insomnia lately. I am pretty sure it is because I have let's feed or adapted my children's bad sleeping habits overt the last five years. Also my mom has a hard time sleeping too. Any ways there has been something on my mind the last couple days and I want quite sure how to wrote what I have been feeling. Since I am wide awake I might as well try to write something's down.

After Rose and James were born I started to realize that I had some postpartum depression after both of my pregnancies. It was really difficult for me to accept the fact that I needed a medication in order to function normally, but I do. I have always been a pretty emotional person either really happy or passionately angry. I feel all of the emotions intensified. So when I started having postpartum depression it hit me like a ton of bricks. I am on medication and it helps but the biggest thing that changed for me is that I learned how to disassociate myself with people and my emotions in order to just make it through the day. I had to put a shell around my emotions and the medication makes me feel more level and consistent.

I am beginning to realize that when rose was diagnosed with T1D that shell hardened a lot. When you have to give your child a shot every time you eat you have to disassociate the fact that you are hurting the same child that you would give up your life for in a heart beat. You HAVE to hurt them in order for them to live. To deal with that I mentally hardened my emotional shell to function with the new reality of being a T1D parent. But now I am beginning to realize the effect that it is having on me and my family. Sometimes I feel like a robot with no emotions and connection to the people I love the most. I want so desperately to break they she'll and to feel those deep emotional connections with people. I have found that it takes a lot of work each and every day to have those connections. But the truth is sometimes I don't want to have to worry about one more thing during the day. I still feel so overwhelmed with the T1D life and to add one more thing is just way to much for me right now. I know that someday I will break through this shell but for now I am going to keep it on. And I am going to wear it as a badge of honor that I am a mother of a T1D child and she is thriving.

People always ask me how Rose is doing. The fact is she is great. She was so young when she was diagnosed that she doesn't know any different now. But for me, it has been very difficult mentally. I have come a long way but I still have a long way to go. Being a T1D parent changes everything and it takes a big toll on you emotionally. When the kids are so young when they are diagnosed they just adapt. They are resilient and it is amazing to see how they just step up and move forward never looking back. I hope that I can one day move past all of this emotional scaring and be like Rose... brave, resilient, and strong.

Basal vs. Bolus

When you are diagnosed with diabetes you learn lots of new terminology that you had no idea existed. It takes a long time to sort all of the words out and to fully understand what in the world you doctor is saying to you. Bolus and basal are two of those words.

Basal and Bolus refer to the two different types of insulin you body makes. The basal is the constant insulin that is secreted by your pancrease that keeps your BG in check even when you are not eating. Bolus insulin is the extra amount of insulin that your body produces when you eat something. When you are diabetic you have to create the same affect, so you use two different types of insulin, long lasting and rapid acting, to imitate your body.

The long lasting insulin lasts around 24 hours. We were prescribed Lantus. Now that we are using a pump, we use NovoLog in small increments all day long to keep Rose's insulin level constant. Usually every three hours she gets 0.11 units of insulin as her basal.

Okay so the other type of insulin is the rapid acting. The rapid acting insulin we are using right now is NovoLog (we are changing to Humalog as soon as we run out of Novolog). The rapid acting insulin typically stays with you for about four hours. Rapid acting insulin is given 10-15 minutes before meals. It is the insulin you use to help the food being eaten be digested.

Remember that when you are doing injection therapy you use both types of insulin. With a pump you only use the rapid acting insulin. Something we did not know until we switched. I think that is amazing how your body works. Two different types of insulin to keep your BG down is amazing and it just does it. You don't even have to think about it. What an amazing gift our bodies are.

On a side note, we took the kids four wheeling today. They loved it. We are celebrating my husbands birthday today by staying home and playing with the kids. We also got to do a secret Santa door bell ditch. It was so much fun. Last year we were so blessed to be the ones receiving all of the gifts and this year we got to pay it forward.  That is what Christmas is all about. 

Confidence

With in the last couple days I am really starting to feel completely comfortable with every thing we have been given to handle recently. The diabetes is just part of who Rose is and I love everything about Rose. Even this horrible chronic disease that she will have for the rest of her life. Rose was given this disease because that is what she needs to grow to become more like her Heavenly Father. Rose is perfect in every way. Although I want to take this disease away from her she is not broken. Rose is brave and resilient. She has more courage than I will ever have. So tonight I am grateful for our trials, for the opportunity we have had to grow stronger as a family and the confidence I have gained personally. I am finally beginning to find who I really am as a woman and mother.

Auto Immune Disease

Do you know that type 1 diabetes is an auto immune disease? Yep that is right. It is from the same family/ gene as Parkinson's, autism, allergy, and other auto immune diseases. When they told us then in the hospital it was shocking to us. We had no idea. Yes T1D is not just hereditary it also involves the white blood cells attacking healthy insulin producing cells, because of some virus. When we were first diagnosed I did quote a bit of research on immune diseases to learn if there are other things that we can do help Rose's immune system. Yes it is part of her pancreas that isn't working but the immune system is the underlying problem.

The immune system is such a huge system and there are so many parts and organs, it makes it very hard to pin point exactly what goes wrong when the white blood cells start attacking the pancreas. Besides Rose getting too low,  the other thing that worries me is Rose getting the stomach flu. With her already having a weaker immune system I had to find something to make the immune system stronger. Low and behold Probiotics.

I have been a big fan of  probiotic since James was a colicky baby. He had horrible acid reflex and I tried everything. The only thing that worked was a probiotic. Probiotics helped better than his acid reflex medication and I love the fact that is was a more natural approach to helping him. Well probiotics also help your immune system. Hence the reason why we take probiotics every day and sometimes twice a day when my kids are sick. We also take multi vitamins and sanitize everything like crazy. I do not want the flu to come to my house.

New Type 1 diabetic families

My second cousins son was diagnosed with type 1diabetes yesterday. I have been trying to figure out how to comfort their family and what would have made those first months easier. The hospital is so overwhelming learning all of this new terminology, learning how to count carbs, how to administer insulin, all while being in denial about the whole thing. You kind of go into what I call "sick kid mode". You do what has to be done hoping that there will be an end in sight. It is kind of like when you are taking care of your child who sick with the stomach flu. It is exhausting and you don't want to do it, but you do it just because it has to be done. Then you reach this point where it hits you like a ton of bricks. You are never going back to your old life and your child will never go another day without insulin being administered to them. It is devastating and sometimes you want to crawl back into your bed and hide from all of it. But you can't. This is your bitter cup to drink and you swallow hoping that tomorrow will not be so overwhelming.

It does get better but like my older sister says "Diabetes is not a sprint, it is a marathon." Take it one day at a time and sometimes even one meal at a time. When you have worked so hard to count carbs, make dinner, dose your child, feed everybody else, and feed yourself, remember to celebrate that you have made it through one more meal. Diabetes is a huge chronic disease that never goes away, so celebrate the little things .  Every BG that is in your range, celebrate.  Every time you read something new about the amazing technology out there for T1D's, celebrate. If you don't you get burnt out and begin to loose hope. You get discouraged and your child depends on you more than ever.

Remember you can do this and find other families that have been effected with type 1diabetes, too. They are your new support group and they will help you stay motivated and encouraged to keep taking care of your child to the best of your ability.

A1C

Last time, I posted about Rose's A1C.  A lot of people do not know what that is.  Well here is an explanation and why we have Rose's tested every 3 months.

An A1C is kind of like a batting average for a baseball player.  The eAG is the mean of all of the Blood glucose levels in the last 3 months. It is rated like this.  Rose was at a 6.6% which is awesome.  I even got a smiley face from my nurse on my paper. Man I am such a person pleaser.

http://www.diabetes.org/living-with-diabetes/treatment-and-care/blood-glucose-control/a1c/

This is how diabetes.org explains A1C.  "Hemoglobin, a protein that links up with sugars such as glucose, is found inside red blood cells. Its job is to carry oxygen from the lungs to all the cells of the body. Glucose enters your red blood cells and links up (or glycates) with molecules of hemoglobin. The more glucose in your blood, the more hemoglobin gets glycated. By measuring the percentage of A1C in the blood, you get an overview of your average blood glucose control for the past few months."

It is so amazing to me to learn about how our body works.  It is amazing that Heaven'y Father made our body so perfectly that even at a molecular level our body knows what to do to make sure we are healthy. Although Rose's Body might not be as perfect as other bodies on this earth, I do believe there is a reason behind it.  I am grateful to Heavenly Father for the parts of her body that do work.  She is able to see, hear, touch, taste, and she can run and walk just like any other three year old.  We are so blessed and sometimes I focus on the bad too much.  We are grateful for Rose in our lives and yes I am even grateful for her diabetes today.  Diabetes has brought me closer to her than I have ever been.  I am grateful for our the diabetic community out there.  It is wonderful to meet new people who struggle with the same chronic disease. 

The Face of a T1D Child

I was talking to my husband this morning about Jerry the Bear and he brought up that fact that you can almost tell all the children that have T1D just by looking at their face.  They always have a sheepish look about them.  I started remembering what Rose used to look like before she was diagnosed.  She was so outgoing and afraid of nothing.  Now sometimes when I look at her it is almost though I can see stress, nervousness, or ashamed for something she can not control.  It kills me to think that this disease might hold her back.  She deserves the world and I can't give that to her.  I can do my best to make her feel normal but the truth is I can't change her broken body.

On a lighter note, we had our three month check in with our endocrinologist. When we met with him a month after Rose's diagnosis she was at 7.7% with her A1C.  Our goal was to get a 7% at the next appointment.  Well I am very proud to say that we got a 6.6%.   That's right.  Diabetes might be our trial but right now I am kicking it's butt.  It was so nice to get medical confirmation that I am taking care of my child to the best of my ability.  I just need to keep it up which is sometimes the hardest part for me.  I do really good for short periods of times but keeping it up will be hard.

I mentioned Jerry the Bear above.  It is amazing.  Please take a moment to check out their website and if you can donate to them.  I can't even begin to tell you how amazing it would have been to be given this bear in the hospital when Rose was diagnosed. Every diabetic child should have Jerry the Bear.  We just purchased our pump, next is the Continuous Glucose Meter, and then Jerry the Bear is on my wish list for diabetic supplies. It is so sad that diabetic technology is what I want more than a house or a new car.  I want to be able to take care of Rose the best I can and having some of this wonderful new technology would be life changing for us.

My Rose

Rose,

I have always loved you.   You have always been my little girl and I was so excited to have a daughter first.  You are funny, bright, and always making sure everybody is doing what they need to be doing.  You are always singing and dancing around the house about everything.

I had no idea how brave you actually are, until you were diagnosed with T1D.  You are braver than I could ever be.  I do not know how you can get shots and pricked all of the time.  You know what has to be done and you just do it.  I admire you for that.   When we first came home from the hospital, I was getting ready for the day and you kept telling me that you wanted to be just like me.  I started to tear up because you are already stronger than I have ever been. I have always been terrified of pain and needles and you deal with it on a daily basis.

I hope you truly know how much Daddy and I hate hurting you, when we give you a shot. We do not like to do it but we have to.  I think that you are truly beginning to understand why we have to give you insulin. You are always asking how many carbs are in food, what your BG is, and  always wanting to help with pushing the numbers on your pump.

I also want you to know how much I wish that I could take this disease away from you.  It hurts me so bad to know that you will not live a completely normal life.  I know that diabetes care has come so far and hopefully in your life time they will find a cure but I want more than anything to give you a normal life.  Although I want to take away this disease,  I also understand that you were given this trial because you are strong enough to bear it and there is a reason for it.  Heavenly Father knows you by name and knows of your circumstances. He loves you so much.

I am so blessed to be your mom and to have you as my daughter.  You are so strong and brave.  I truly hope that I can someday have your courage and strength.

I love you!

Love,
Mommy