The last 7 days have been hard. School has been hard this week. The art of listening and hearing is a lost one many times. Over the course of the week, when the problems began to pile up and the answers were nowhere to be found, I began to get angry and upset, ready to take overly drastic measures. I know that I need to look to the Lord for the answers - He knows the outcome of all of this and I felt that I could handle it. Self tends to get in the way when times are hard. I know in my heart that I need to lean on God - it is easy to lean on Him when things are easy. Satan uses self to pull me away from God and lean on myself.
At the end of July, I spent a week at high school camp as a counselor for the students at our church. The theme for camp this year was Death to Self. Our youth pastor challenged the students, and the adults, to daily die to self. For me, sinful man that I am, that is one of the hardest things to do. It is like I must turn off my brain and just give everything to God. God has to handle all situations, not just the ones that I figure are too big for me to handle. He has to have the freedom to handle all situations - from the teeny tiny to the whale size ones. He has the freedom and the power but He is not an overpowering God.
I didn't know that when I went to camp that I was going to come out on the other side a completely different person. Over the last 17 months of this Type 1 journey, I have tended to rely on myself to find the answers and the way. When Jack was diagnosed, I sat in that hospital and handed it to God. I knew then, and still know now, that there is no way that I can do this on my own. At some point in the last 17 months, I decided that I was going to take it back and try to figure it out on my own. God has a way of letting us do that. He knows the outcome but He lets us do it. When we fail miserably and go crawling back to Him, head hung in shame, He doesn't scold or chide us. He welcomes us with open arms of love and eyes of grace and mercy. How awesome that there is a God that does that?! When we, as parents, allow our children to do something that we know the outcome to, what do we say to them when that outcome occurs? I know that personally I have said, "See, I told you that was going to happen." What would happen if I welcomed Jack with arms of love and a spirit of grace and mercy? Even in our adulthood, we are children. We act like children. We do things that children do, in defiant attitudes, because we think that we know better and we know everything. Our Father in His goodness will give us correction when appropriate but even that is done in a loving way.
I got to a point on Friday that I practically shoved myself out of the way. Through tears, I crawled back to God. I told him that I couldn't do this anymore. Only God! Only God can get us through this valley. I can't remember exactly where I heard this but I will never forget it - God doesn't put us in the valley to just meet us at the end of it. He puts us in the valley to walk through it with us. How awesome is that! He never leaves us even in the deepest darkest valley. He is there with the Light shining the way to the end. He is there for us to lean on every step of the way - in fact He wants us to do so. Don't feel like a burden to Him. He has me right where He wants me.
For now.
For the last 16 months, we have been fighting. Fighting a disease that doesn't play fair. Fighting for Jack to be a little boy. Fighting. We fight insurance companies. We fight pharmacies, We fight the school district. We fight the school. We fight others that don't understand or want to understand. We fight teachers. The fighting is very tiring. It adds on to everything we must do in a day to keep Jack safe and alive. We have fought for Izzy to be a part of our lives, to be there to help Jack, to go to school with Jack. I know that we can't stop fighting. To stop fighting is letting this disease win.
Without Type 1, life is a fight. Nothing is easy and never will be easy. Type 1 makes everything that much harder. Life is hard and I would be a fool to say that it wasn't. Many would ask if I lived under a rock if I said that life was easy. Type 1 compounds the problem - I don't even have Type 1. I know that Jon and I's life is harder because of it. I can only imagine how hard it is for Jack. Right now he lives in this blissful unaware state of 8 years old. I'm so grateful that he is blissfully unaware of the fight that is ahead of him - the fight that he is already in.
As I said in my last post, Izzy is working through the perceived danger that is Jack's classroom. He seems to be getting better. However, one of the teachers in the class seems not to like Izzy or the fact that he is in the class. Today, she made Izzy come home because he was pacing and not laying down. Jack's blood sugar was high and Jack was ignoring him. Izzy's answer to Jack ignoring him was to get up and pace and thus annoying Jack - yes, I said thus. Both of Jack's teachers told Jon that it was something other than that but Jon knew that it was just Jack's blood sugar. I don't want them to call me everyday because they perceive that he is bein disruptive.
I feel like I've come to the point that I don't want to fight anymore. I know that I have to fight for Jack, fight for Izzy and fight for other kids that will come. I know that we have a master champion in our corner and that through all of this His will is going to be done. God has an amazing plan for Jack and Izzy.
For now.
On Monday, Izzy had a rough day. He was fine when I dropped him and Jack off at school and through music. When it was time for him to go back to class he was having no part of it. The teachers finally got him back into the class but he would not settle down. Jack's teachers called me to let me know what was going on. Thankfully my mom was off that day and she headed that way. In the short time that it took her to get there, one of Jack's teachers called again to tell me that Izzy was visibly shaking. I got more concerned and called Jon. I, then, headed that way. I thought that he was sick or got into something. When my mom got there, Jack and Izzy were sitting in the clinic. My mom called to tell me that Izzy was just fine. Jack's class had already gone to lunch and Jack was eating in the clinic. When I got there, I grabbed Izzy and headed down to the class to see if I could figure out what was wrong. He walked with me all the way to the class and I got him to go into the class but I could tell that something was wrong. He was very antsy and didn't want to be there. I did notice a new smell in the class when I walked in but didn't think much about it. When we got back to the clinic, I asked the nurse what Jack's blood sugar was and she told me that it had been dropping after music. I thought that Izzy was alerting and that is why he didn't want to go in the class. I also thought that the new smell might be overwhelming him. I asked my mom if she could take Izzy home. That afternoon I googled smells that dogs have an aversion to and one of the main ones is citrus. I talked with Jack's teacher and they told me that they had just placed new plug ins in the room that morning and they were Hawaiian breeze - which has citrus in it. We were able to put everything together and figure out what happened. Jack's blood sugar began to drop very quickly. One thing to know about the body and what scent it gives off for Izzy to know what to do - when the blood sugar is dropping, the body releases a sour smell and when the blood sugar is rising, the body releases a sweet smell. One thing that Jack had that helped diagnose his Type 1 diabetes was a sweet smell to his breath - that is also an indicator of DKA (diabetic ketoacidosis). When Jack and Izzy were nearing the class, Izzy could now smell the sweet smell of the air freshener in the classroom and it threw his brain into crisis mode. Izzy did not want Jack to go into that classroom because Izzy thought (now) that Jack was in immediate danger. The reason he was calm in the clinic was because Izzy knew that Jack was safe. Over the next few days Izzy began not wanting to go to the classroom. I talked with Bubba and that is when he explained to me that Izzy was associating the classroom with danger. Izzy loves Jack so much and wants to keep him safe at all costs. God amazes me that He allows this little yellow dog to have the where with all to perceive a danger that we as humans would not have done so.
Izzy has been with us for just over a month and he has already saved Jack's life a few times. Keep praying for Izzy as he is working through this perceived danger.
For now.
Yesterday was another first for Jack and Izzy. Izzy went to school all day with Jack without Jon or I being there. I had to work and Jon had taken the day off. I, of course, was a nervous wreck. Why you ask? Mainly because I am a mom, also because I knew that I wouldn't be in control of the situation. Something that I have begun to realize over the past few days - I hate not being in control of every situation that I am in or at least having a feeling of someone being in control. There I admitted it for the whole world to know and I am not ashamed.
Ok, so back to yesterday. Yesterday was a milestone day. Jack was able to show Jon and I, as well as all of the school personnel that he is working really hard with Izzy and that he (Jack) can control him. Other than 2 small issues that we will hopefully work out this weekend, they both did phenomenal. I am so proud of Jack for stepping up and showing us all just how mature and responsible he truly is. He loves this dog more than I can ever explain to all of you. He is so careful with him - he doesn't want to hurt him. Last week, Izzy's foot got hit with the door and Jack just started crying. Apologizing to Izzy for letting the door hit him, sitting in the floor with him to make sure he was ok. He has a very tender heart and love just pours out. Together the 2 of them conquered school. They did baseline county testing together, they went to music together. Izzy alerted a couple of times and they marched to the clinic together. They are fighting Type 1 together and it makes my mom heart explode!
They are at school together today and I can't wait to go at lunch time to hear all about their morning.
Thank you for praying for Jack and Izzy. May I please ask another prayer request? We have had a hard time over the last 2 weeks feeling comfortable with the nurse and nursing staff at Jack's school. Last week, he had some dangerous lows. This week, there have been 3 different nurses in the school. We have asked about his nurse from last year. They are going to check and see if she is available. Please pray for Jack and the other 4 Type 1 kids that they do well until a steady permanent nurse can be placed. Thanks.
For now.
Kim
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 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
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
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.
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.
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
