A Taste is Too Much

This weekend I was standing in my kitchen, when I realized I didn't feel well, I had a headache, my stomach was sort of cramping, I was light headed and shaky, and a panicked feeling came over me. It was a nervous, sweaty panic. I had 4 nieces and a nephew hanging with us for the day and I was terrified. It finally dawned on me. My sugar was low. I tested and sure enough I was heading low...which is strange since I've never felt anything like this and had eaten that day (I don't usually eat breakfast but had oatmeal and coffee with a little sugar). It wasn't until I had eaten something and started to feel better that I realized that so much of Lane Michael's life is feeling like that. Headaches, shaky, nervous, panic. It was a slap in the face of reality. His reality. I have a new appreciation for what he goes through, I now realize, the pokes, the shots, the blood work...that's the easy stuff compared to that feeling.

Sometimes I'm Sappy

The last 4 years have been...hard. Impossible. Tragic. This week marks the anniversary of when we changed, our life changed, our family, our perspective, our relationship with God...it all began 4 years ago this week. Lane Michael was diagnosed with diabetes. I can't imagine what life would be like without diabetes. Everything would be different. I can think of so many things...but it started the spiral to rock bottom. I was 6 months pregnant when he was diagnosed, 3 months later Braden died. 2 months later my Dad was diagnosed with cancer. Then they found what they believed to be tumors on my thyroid, I had it removed. Then my Dad died. My family fell apart. My siblings and my husband and my Mom...we all fought. hard. It isn't a 4 years I'd ever want to repeat. I remember in our darkest moments feeling like I should move, I should place my family in a better place, even if it meant no family support system. Dark times people, very dark. Ryan is in the hospital...has been since Monday...there's a little guy in the special care room next to him. As Ryan and I were taking one of our many walks I saw Dr A....she was Lane Michael's endocrinologist when he was younger...we changed when he had a seizure and she told us to spank him because it must be a temper tantrum. I was never comfortable with her but that was our final straw. Anyway, I knew this little guy must have diabetes...so later that day when little guys Mom asked if Ryan has diabetes, I said no, but my 7 year old does...I told her how much easier it gets...turns out little guy has had diabetes since he was Ryan's age...14 months old...scary. sad. She looked and sounded exhausted...they had been on an insulin pump but something had gone awry and they were switching to shots, I told her how much Lane Michael is able to do for himself, how our daycare center gave him shots so that Todd and I could work. My heart broke for her, she was so scared of her own life that she wasn't living. I told her that if I tell Lane Michael how many units, he knows how to do the rest, he can be with friends and family (not often but some). During our conversation she told me that she had quit her job when little guy was diagnosed, and was thinking about going back to work when he starts school. Life changed in bigger ways for her than it did for me. I think talking helped her...I wish we had more time to talk, she was nice, and looked like she could use someone to talk about diabetes with...her husband was there and seemed very involved...I was glad to see him there!

A Buffet of Auto Immune.

Last year Lane Michael was tested for Celiac, we left the biopsy with our doctor (who we loved and trusted) saying "I am 98% positive that he has Celiac, don't start the diet but be aware that we will call and confirm this in the next few days" A week or so later I was walking through WalMart over my lunch hour, when the hospital called back. Lane Michael has an infection that mirrors celiac disease, he does not have it at this time, be checked again in a year and take this medication for 2 weeks to clear up the infection. The blood work last year showed he had 11 markers for Celiac and anything over 5 was abnormal. So this year I was more prepared, I went with a list of the symptoms he has, a list of concerns and questions. He has constipation, and stomach cramps and he seems thinner. When we sat down with the doctor she said that his bowel doesn't seem to be emptying completely, he went from being in the 58th % to the 45th % and he should not have dropped that drastically in one year. She said the stomach cramps are concerning. and then she told me that he now has 26 markers in his blood work for celiac. This year I'm ok with this diagnosis. Last year I couldn't have handled it. This year I can. I am not facing a new baby in the house, and Todd's job change, this year I am at peace with this diagnosis. I have accepted it, and I'm ready for it. I'm sad for him, for my family, for the changes we'll face, the challenges ahead, Lane Micheal hates pizza, that's a plus but pancakes are his favorite. How will we eat at Bob Evans? How will he share birthday cake with his friends? We will figure it out. More than anything I just want to start living life with him...a normal life. I want so many things for this little person. The thing is I don't worry about him, I don't worry about whether he will be successful, I know he will be. I know that God has great plans for him and this is his path, the path he has to take in life to get there, to be the person he has planned him to be. This weekend a little boy came to the party and was introduced to all the boys at the party, they were all playing video games, they all waved over their shoulders, Lane stopped what he was doing, went to the little boy and said "Hi Alex, I'm Lane nice to meet you" because as much as he has going on, he's still able to care about other people. What a special boy! So I asked the doctor "is there something linking all of this together? something that could explain all of this?" She told me "yes, he is a buffet of auto immune diseases, his body is his own worst enemy and it's just attacking itself, he has an over active immune system" hm. man that sucks. And the kicker? Ethan needs checked. Celiac can cause small stature and hyperactivity, ADD and learning disabilities. Nice, so maybe we can explain some of his ADD stuff!

Sometimes it's the little things.

Yesterday was hard. I got an e-mail from my church letting us know that a friend had lost his sister and the family would need prayer...the sister was 51 years old and had fought a life long battle with Juvenile Diabetes. It said that her 25 year old daughter would also need prayers. While I know you can live a good life with Diabetes it's not something we'll ever be able to shake and sometimes I feel like we're fighting a losing battle! Nothing I do is ever going to be good enough to keep his sugar good all the time and no matter what I will fail because I can't control things like growth, like gym class, sports, stress, a big test, a crush, running too much, not running enough, swimming. Why couldn't I be the diabetic!? Why does it have to be him and not me?

Followed by the call that I'm not pregnant. I didn't want to be pregnant but I had kind of gotten used to the idea of being pregnant...I had rearranged bedrooms in my head, thought about the cloth diapers I'd buy, and planned maternity leave...so just for the day I was sad. A baby is never a bad thing. I may not have planned him or her but that didn't mean it wasn't what I would want.

Then came the news that the CVSO (person who does my job) in Franklin County plead guilty to stealing over $11000 in just 10 months. I liked her, I trusted her and I just felt...angry with her. I don't want to be angry...it's not really my thing but I also think that my feelings about Lane Michael's diabetes and not being pregnant may have influenced my feelings about Gloria.

Then to top my day off Ethan was struggling with homework that he should have gotten months ago...he should understand all of this by now and he just doesn't! He doesn't get it and I know it's his ADD but if he is struggling this much with kindergarten stuff then what will the years to come be like!

I'm tired. I'm tired of my kids having problems that they d0n't deserve, struggles that will affect them for years to come and not know how to help them. I feel helpless. I am helpless. I will give this to God. I will give them to God! I know that God is in control of all this! Saying that, saying God is in control helps, knowing that he's got my back helps!

My Brave Boy...

Have you ever talked to an adult diabetic? They often tell you how bad their finger tips hurt, or how they wish they could eat candy or sweets, how they hate the shots and they don't like keeping track of what they're eating. Lane has done all of these things for almost two years now. He can get cranky and whiny sometimes...in fact sometimes it's hard for me to handle. But then I remember that at his age, I was eating a spoonful of peanut butter...just because I felt like it, or a piece of candy just because it was Wednesday...either way, I didn't have to be careful of what was going into my body. My kids don't have that luxury...they never will. I keep Ethan on the same schedule as Lane. I know that I could give Lane whatever he wants and just accompany it with the appropriate amount of insulin, but that isn't healthy for him. They eat a lot of fruits and veggies...but sometimes it would be nice to not have to think about how many carbs is in everything. It would be nice to let my kids eat marsh mallows when my brother brings them for his kids. It would be nice to say to them, lets stop for ice cream before we go home and not have to think about carbs, shots, glucose testing and what time it is. I don't want to worry all day long if the school is caring for him properly and if the teacher will recognize the signs. If she'll let him have all the things the other kids are having for class treats. Diabetes sucks. But we often talk about what we'll do when Lane is cured. We decided we'll buy one of every kind of candy at the gas station and get three movies. We'll sit and eat candy while we watch our favorite movies. Ethan is especially excited for the day when Lane will be cured, not because it means we'll eat candy, but because he doesn't want Lane to be sick anymore. What sweet babies I have!