24 hours and a life change

I don't know that if someone had told me 15 months ago that a four legged 2 year old lab would change our world for the better that I would have believed them. Around 24 hours ago this sweet child of a dog came into our lives. Around 24 hours ago our lives forever changed. In this short amount of time he has eased the worry of Jon and I. He has cleared the skeptics minds about his purpose and job. He is a true gift from God. Jack has a new best friend in this sweet dog. We have a new family member - although a certain brown dog is not too happy about this.

One of my biggest things that I struggle with is worry. I think that as moms we are naturally inclined to worry. When you have a child with a chronic illness or medical fragility, you worry just a bit more. You are always worried about if there is another child around that might be getting sick and how it will affect you child. For most Type 1 parents, we worry about their numbers getting too high and our child going into DKA or their numbers getting too low and them slipping into a coma. Even though I work outside of the home, I still have a never-ending life of doctor's appointments, school meetings, calls to the insurance company, homework, bills to pay, house chores to do. God has been reminding me lately that I need to work on my patience - that is not one of my spiritual gifts. He's also been really working on me and my worry. Just earlier today I was reminded of a verse in Matthew 6 when Christ was giving His sermon on the Mount. In Matthew 6:33-34, He tells us to seek His kingdom and not to seek out worry. He then says "So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own." I feel that when I worry, I am trampling all over God's plan for my life and for Jack's - because much of my worry is over him.

I know that God has big plans for this little boy. Oh if I could just get a glimpse but I will try my best to wait and help him follow God's call on his life. I'm learning that in all my worry it never usually accomplishes anything. I have to step up, step out and ask God for guidance. Usually it's me saying "ok God. You and me. Together we got this." Probably not the most correct way to go about it but it works. I said a few months ago when Jon was promoted out of the blue, that it felt like God had grabbed us by the shoulders and turned us and told us to walk. I feel that that is the same thing that happened when Jack was diagnosed. I was told by his endocrinologist that I was one of the most calm parents he had seen in quite a while. I believe that is what happens when God lifts the veil over your eyes just a little to the path He is leading you down. For a long time after my dad died I was angry at God. Angry because He let my dad die. I can see now that it was my dad's path and that what he lived with for 20+ years and his death would benefit me greatly some 13 years later. I won't say that I was calm when Jack was diagnosed but I was completely at peace with it. It was another one of those "ok God. You and me." moments. I know that if I didn't know Christ as my Savior I probably wouldn't be as focused as I am on Jack and Jon.

It was one of those brighter lights on the path that led me to email a complete stranger with questions about Diabetic Alert Dogs. By doing that, we now have 2 wonderful friendships that we wouldn't have had otherwise. By doing that, we have a sweet and funny little lab sleeping in the floor helping Jack with his blood sugars. I am so thankful to God for opening all of the doors that needed to open for us to get this dog. For opening all of the doors to get the dog into the school with Jack. Without Him our lives would be nothing. Without Him we would be lost.

For now.

Kim

TODAY!!

Today is the day! The day that we have been patiently waiting for. Bubba is making the drive to Jacksonville to bring Izzy to us. Jack is over the moon excited and can barely contain it. We pray for safe travels for Bubba and Izzy. Today and tomorrow are going to be a whirlwind but in such a good way with a great ending. I will post pictures once I get some.

Yesterday, we got final approval for Izzy to go to school with Jack on Monday. It has been a long road with the school but it will all be worth it. Tomorrow we go to the school for 2 hours to let Izzy and Jack get accustomed to the school without 1200 students in it.

God is so good!!

For now.

Kim

6 days!

Man, life has been crazy busy!! I feel like we have been going nonstop since Christmas. As many of you know we made the decision late last year to get Jack a Diabetic Alert Dog. We began working with Hub City Service Dogs to find and train a dog for Jack. Jack has a very, very difficult time knowing when his blood sugar is low. Most of the time he has no clue. It has been a long process but I know that God is in this and we have to do things in His timing.

Here we are, now 6 days away from our Izzy making his appearance. It definitely has been in God's timing. The first dog that we had didn't have the food drive needed to be a D.A.D. She is now a PTSD service dog for a soldier and I am so excited that she can help someone else. The second dog that we were introduced to was doing really well until just about 2 months ago. She started showing dog aggression and Bubba didn't want to bring her to our house and there possibly be a problem with Penelope. When Bubba called to tell us what was going on with the 2nd dog, I immediately became discouraged. He quickly told me that he had been secretly training another dog at the same time. He said that this dog was doing great and was actually ready to be placed. Our Izzy is going to be a 2 year old yellow lab. Our Izzy is a boy, not a girl. We decided to keep the name Izzy because that is what Jack picked out and I had just ordered a special dog tag for the dog's collar for school with the name Izzy on it. So on Thursday, August 20, our Izzy will be making the trip from Hattiesburg, Mississippi all the way to Jacksonville to join our family. Jack is over the moon excited about having this resource.

Life is going to change again - but this time in a good way. Many times I feel that life is always changing for us as Type 1 is so unpredictable. It changed when we went from daily injections to the insulin pump. It changed when Jack agreed to do a trial of the Continual Glucose Monitor (CGM). It will change when Izzy comes. It will change when we get his CGM.

In all of the change, it could have been easy to turn away from God. To turn away from His loving arms and support. To turn to the world and a "woe is me" attitude. Instead, we have run to God. Run to Him for comfort when scared, for strength when weary, for rest when so very tired. Run to Him for help when we didn't know what to do. We have continued to be faithful to God and what He has called Jon and I to do as Jack's parents. There are times when my brain is fuzzy and my body is tired that I have to tell myself that I am not alone. Jon and I are not alone in this walk. God has put so many people in our path that also walk this journey. What an amazing support group we have found.


Life changes. God does not.


We have started a Facebook page for Jack & Izzy so I am going to do my very best to update the blog as often as possible.

For now.

Kim

Why Hub City Service Dogs?

I'm failing miserably about talking about our journey with Type 1 and how life has changed in the last 11 months. I am honestly going to try to do better. With that being said I thought that I would write about why we have chosen to get a Diabetic Alert Dog for Jack and more importantly why we have chosen Hub City Service Dogs in Hattiesburg, MS.

Type 1 diabetes is a very scary disease all by itself. What makes it even scarier is if you have a child (or adult) that does not realize when their blood sugar is getting to a dangerous level - either high or low. The purpose behind the Diabetic Alert Dog is that the dog will help alert the person to a changing blood sugar - in Jack's case it will be a low blood sugar. I know that many of you are probably thinking that this is the most absurd thing you have ever heard. How does a dog know that a blood sugar is going into the dangerous range? Dogs have an amazing sense of smell. Case in point police K9's and search and rescue dogs that can find humans - dead or alive. Diabetic alert dogs go through a type of training known as odor training. What that entails is that scent samples (Jack's saliva when his blood sugar is low) are given to the trainer and then the trainer takes those samples and begins to train the dog to alert to whenever they smell that certain smell. From everything that I have read, watched and learned from Bubba (our trainer) these dogs can give a good advance warning on when the blood sugar is changing into a dangerous range and that allows their human to check and treat that blood sugar. We know that this dog will not cure Jack's diabetes or even take away our hyper vigilance of checking and managing this disease. We know that we will have just added another tool to his diabetes care to help him be able to live as normal a life as possible. Another reason why we are getting the dog is for Jack's safety while at school. Jack goes to a very large school and is the only student in the school with Type 1. That is hard for us as parents and for the staff of the school. We appreciate very much all that they have done for us. We want to make sure that Jack is safe at school and that is hard when there is only one person in the entire school that is trained in his care. If there were to be an emergency, the only person that could help would be the nurse and she is all the way in the front office. Some in the school are not thrilled about the dog but as I have told anyone who will listen, if Jack were blind or in a wheelchair there would be no argument.

Type 1 diabetes is a very misunderstood disease. Those that have not had any interaction with it do not understand how serious of a disease this is. They do not understand that Jack has to have insulin all the time. They do not understand how dangerous it is for him not to be able to feel his body's cues of a high or low blood sugar. We are trying very hard to educate as many as we can about this disease and everything that comes with it.

Now for the next question - why did we chose Hub City Service Dogs? A few months after Jack's diagnosis I was researching different things online relating to Type 1. A few news stories came up about a new type of service dog - Diabetic Alert Dogs. After reading about families with these dogs and watching videos of what they do, I began to research trainers and breeders in or around Florida (on the East Coast). I am sad to say that I did not find anything in or around Florida, much less the East Coast. Everything I found was in the mid-West or Western states. Some of the programs had residency restrictions on them. Most of them came with a price tag pushing $30,000. I was on a website for parents of Type 1 diabetics and I ran across a story of a girl that had a D.A.D. and was doing beauty pageants. Now I would normally never do this but I looked for the mother's contact information and found it. I sent an email shortly after just asking if she could give me some advice on D.A.D.'s and trainers. A few days later I received the most amazing reply. The mom replied back with enthusiasm and generosity in answering my questions. She also said that she had talked to her trainer where they lived and asked me to call him. A few days later I did just that. After speaking with Bubba and hearing all about their program, I felt that this was the organization that we would work with. This organization is absolutely amazing. To start with they are non-profit and that makes a world of difference for us. Another thing about Hub City Service Dogs is that they train service dogs for all walks of people. They are not just focused on one select group of clients. Everyone that we have been able to meet have been so passionate about this calling and this organization. That makes all the difference. I know what many of you are thinking - why did you drive to Hattiesburg? Honestly, I would have driven to the moon just to work with these amazing people.

One final thing, as far as Jon and I can tell, we believe that Jack will be one of the only people in Jacksonville with a D.A.D. We are hoping that once people see what this dog can do than all of the misconceptions will go away. We are still trying to fundraise to help the organization place more dogs with other families. If you know of any business or if you would like to donate, please go to http://hubcitydogtraining.com/.

For now.

One of those days..

Today has just been one of those days. Well the last 36 hours has been rough. Yesterday was Jack's 3 month check up with the endocrinologist. His A1C went up - as we were expecting. Talked with the ARNP about some issues we are having at school and about his Diabetic Alert Dog. He wanted to take those things to the doctor to get his opinion on them. The phone call that I got after everything was presented to the doctor was not what I was hoping for. Even after expressing to them that Jack did not want to be on the CGM, the doctor really wants him to be. Like I told the ARNP, while I know the purpose of the CGM would be wonderful if there is not a responsible adult other than the nurse to help if there is an emergency then what is the point. Then they suggested again that we think about changing his school to one where they are willing to be more accommodating with staff training (other than the nurse). If we were just dealing with his T1 then I would be all for that but we are not. It is very difficult to make a change of that magnitude with Jack. We would be taking such a ginormous step backwards that it would negate everything that we have done to this point. I'm just really confused. I wish there was a better way to say it but there's not. My brain is tired from all of this. The lack of understanding and willingness to understand is dumbfounding. We asked the ARNP if the doctor could write us a letter of medical necessity for Izzy. The answer we got was not what I had thought we would get. The doctor said that since he did not know of any of his patients that were using one and since he doesn't have any data from research proving the effectiveness of these animals that he would not write one. I understand his reasoning to a point. That's fine if he doesn't want to write the letter, Jack's pediatrician is writing one.

Just to be able to have the discussion about Izzy going to school with Jack requires letters of medical necessity from at least one doctor, as well as, proof of our trainer's certification, the dog's certification, and certification that Jack has been trained on how to handle the dog. Even after all of that is turned in they can still deny Jack the opportunity to have Izzy at school with him. Now do you understand why my brain is tired. That doesn't even include the IEP meeting I am trying to get scheduled so that NO ONE at his school will try to take his insulin pump away. It is like trying to get a bill passed in Congress to get this meeting set up. You would think that they would try to be flexible around the parent's schedule - NO! I was basically told that this is the only date and time that we have and if you can't be here than it is going to be another month before we can get it scheduled. I'm sorry but this is concerning my son's life not just a piece of paper.

Jack has had a really rough day with listening to me and following my directions - or any directions, to be honest. For whatever reason, his ADHD/ODD seemed to be in full gear today and that compounds any other thing that is going on and makes him difficult to work with. There has been quite a bit of anger and frustration in the house today.

I honestly don't know what to do anymore concerning all of this. I don't know if it would just be best to pull him out of school all together and either do homeschool or virtual school. I'm not sure that even changing his school would be a better option because there is no guarantee that the administration will be any better towards any of this. It's difficult to be in this position because there are not many people you can talk to about what is going on. Most people don't have any of this to worry about and I don't want to come across as I'm complaining all of the time. It's a lonely place that I stand in. I know that Jon and the Lord are there but it is still lonely. I know that God will see us through this valley we are in. I know that He is not waiting at the other side of the valley but He is IN the valley with us guiding us along the way. I know that is the only thing that keeps me from losing my mind - to know that I'm not truly alone. Even when it's been one of those days.

An Update and Things

So it has been a while since I have written. Last time we were at almost 2 months post Type 1 diagnosis. At that time I didn't think life could get any busier. Well here we are at 8 1/2 months since we learned of our life change. It has been a roller coaster ride and we aren't even at a year yet. For the better part of the last 8 months, Jack has been in what is called the "honeymoon" phase of his disease. What that means is that his pancreas has kicked in and been producing the last amounts of insulin (beta cells) that are stored in it. We don't know how long it will last and it is different for every child. We do feel that over the last month or so he is beginning to come out of honeymoon. His blood sugars have been more all over the place with no explanation. At his last endo appointment in December his A1C was up just a little bit. The added steps of everything that is associated with this has just become part of the routine. Sometimes I think that Jon and I forget about it until we have a low blood sugar or a really high one and then we remember that there is no rhyme or reason to this. Jack is constantly putting on weight and beginning to grow height wise again. That makes us happy.

School is in full swing - in fact he just ended the second 9 weeks, which means they are half way done with school. There was some argument with the county at the beginning of the school year about getting a nurse back to the school. It got to the point to where I had to call Grace and let her handle the situation as there was nothing I could say to get the county doctor to understand we weren't moving schools. Jack has had a really great year up to this point. His behavior is doing well. He has had a few problems but his teachers are helping him work through them. His teachers are amazing this year! I absolutely love them. They have been willing to learn everything that goes along with his diabetes and have been very receptive to the help that Melissa is giving them each week in regards to his ADHD/ODD.

The next step of our journey that we have begun is getting an insulin pump for him. He is so excited about getting this. He knows the rules behind it and is happy that he will be able to play soccer again. We are also working on another tool for his success with this disease but that is a post all unto its own.

For Now.

Kim

Almost 2 months

There are times that I can't believe the path that our lives have taken. Then there are times that I forget the new path our lives have taken. When you are suddenly forced to go a completely different way than what you wanted, it becomes an all out battle. I know that there are times that I tell myself that I don't want to do this anymore but I know that I have no choice because Jack's life depends on it. We have to be so on top of everything all the time. 2 months have almost gone by since the dramatic change. We have adapted well to this new life we are living. Just about 2 weeks ago I became very sick. I think that it was God's way of telling me that I needed to slow down and take care of myself if I am to take care of my family. I know that I can't do everything for everyone all of the time but there are times that I have no choice but to do it. That comes along with the territory of being a military wife. Jon wasn't home when Jack was diagnosed and then was gone a few more weeks after that and we have some time coming up that he will be gone again. Even though he is gone quite a bit for work he always comes home with a willing spirit to help and take over. I so love him for what he does for our family. He provides the majority of our income so that I can work part time and be there for Jack in any way that he needs. Life is tough. I know that God only gives me what I can handle. If I am faithful to what He has called me to do then He will recognize my faithfulness. Next Saturday as we celebrate Jack's upcoming birthday with friends and family, it won't be far from my mind that 2 months ago that day we were admitted to the hospital with the diagnoses of Type 1 diabetes. Instead of being sad about that diagnosis we will celebrate the fact that God has given us 7 amazing years with our little boy (who isn't so little anymore).


For now.

Lost It

So tonight for the very first time since diagnosis, I lost it. I let myself break down and cry. Jack has been doing good over the last week. His blood sugars have been within range. He went back to school and has done amazing! Late this afternoon I could tell that he wasn't feeling too well. Not like the weekend that he got sick which led to his diagnosis. I checked his temperature becaus he felt very hot and he was running a 100.2 fever. I got him to take some Advil and he ate most of his dinner. Around 7:30 he fell asleep and that was our clue that he really wasn't feeling good. We still had a sugar check and at least 1 shot to give if not 2.  I was able to get his sugar checked without waking him up. Because he was wearing a sweatshirt (another sign he had a fever) I couldn't give him his shots in his arm like normal. Jon helped me get it to where I could give him his shot his leg. It did not go as I had hoped. Not long after I got the needle in his leg he moved and then he cried that it hurt. When he jerked it had caused the needle to come out and now his leg was bleeding. So for the 2nd shot we had to get his sweatshirt off and he was not happy about that. The 2nd went better and we got him to lay back down. As he lay down he said "I just don't want to be alone. Please don't leave me." That was all it took. I knew that he hadn't been all the way awake during all of this but it broke my heart that the thought was in his head. I laid down with him and comforted him until he fell asleep. I'm so sad that he has to endure this. I know that this is God's plan but there are times that my sinful nature says that this isn't fair. He doesn't really understand why all of this is happening to him and I don't have words to explain it to him. My wish for him is that his diabetes will just fade into the background. I know that it will eventually but I am so impatient about it all. I just lay there with him and cried. I knew it was a matter of time that this happened but I didn't know when. I know that it is my mommy heart just wanting to take all of this off of him and put it on me. I would rather deal with this than him.

For now.

He knows me!

I sit here listening to Rita (my Sunday School teacher) read Psalm 139. It is really hitting home for me today. God knows every part of me - inside and out. Even when I feel at my lowest, like I have completely messed up, I can't hide from God. He always knows where I am and what is happening inside my head. He knew, last week when I was quietly freaking out about Jack's diagnosis, that all I needed was Him. He reminded me during that time that I just needed to turn the whole situation over to Him, to let Him be in control. As I said in my last post, He has prepared me for this time to do what needs to be done for Jack. I didn't know that this was going to be a part of my future but God did. He knew that what I learned from my dad and his living and dying of this disease would help me be able to process everything I was given. Over the last 2 weeks, God has given me constant reminders that I must trust in Him and ask for help from others, even if it is just asking for prayer. So I ask those of you who may read this to just pray for us, nothing specific but just to pray. 

For now.

A New Way of Life

On Monday, May 5, we made a trip to the doctor for Jack. He had become sick over the weekend and neither of us knew what was wrong. After talking with the doctor and a couple of tests that could be done there we were informed that Jack has type 1 diabetes. We were then told that we needed to take him directly to the hospital. We had to go through the ER but thankfully our doctor had called ahead and we were taken right back. We spent a few hours there while they did some more tests and then we met Jack's endocrinologist from Nemours. Dr. Canas talked directly to Jack to find out some different things from him and began to simply explain it to him. Shortly after we were admitted.
Jon was on his way out of town for work. I wanted him to be there but knew that I had all that I could handle at that time. Jon gets bored so easily and I knew that he would have been simply bored to tears. The next 3 days were a whirlwind. It was so much for us to wrap our heads around. It is one thing when it is your dad and it is just a way of life. This is my little boy, my baby, and now his life has changed in an instant. The thing that I just couldn't figure out in my head was how to completely explain this to him. Thankfully we had some great nurses and doctors that have worked with kids that explained it to him in a way that he understood. One thing that we have learned is that not only has his life changed but ours as well. We have to take a lot more stuff with us now. We are eating more meals at home so that we can't count all of the carbs that he is taking. We are ultra aware of how he is feeling all the time.
Yes, I know that my dad died from this disease but I also know that he was apart of a lot of the treatments they have out there now.
One thing that I have learned from all of this is that God prepares us early in life for things that we will have to deal with later on in life. He prepared me for this and I didn't know it until I was fully into it. I knew on Monday, May 5th that we were going to have to turn all of this over to God. He would be the only thing that helped us all through the first week. He is the only thing that has kept me from completely breaking down. I know that I need to be strong and aware of the things that Jack needs at all times.
This is the beginning of a new way of life.

For now.