Monday, March 12, 2012

"Dad, why did I get diabetic?"

This is the question Urban asked after poking his finger to test his blood for what seemed to be the millionth time a couple weeks after being diagnosed. The tone of his voice was so soft and sweet it just about severed my heartstrings. He wasn't complaining or whining, he was simply curious as to why it happened. How do you answer something like that? I tried to give a short physiological explanation the best I could in a way he could understand because that's how my mind works...I'm very black or white. Then Jared looked at him and told him that sometimes things like this just happen to people who are strong enough that Heavenly Father knows they can handle it and make the best of it. Urban seemed satisfied with that. He said "okay" and continued eating his snack. I quickly left the room so I could cry alone.

ALONE! That one little word best describes how I have felt since January 26th. Kind of ironic seeing as how I live in a house with 7 people, a dog, a cat and the 3 additional kids I have in my home 3 days out of the week. In fact, very rarely am I actually all by myself...probably never really. Unless I shut myself in the bathroom to cry. But even then someone usually comes busting through the door at some point.

So let me back up a bit. Urban (4 years old) and Delilah (2 years old) were both diagnosed with type 1 diabetes on Thursday, January 26th. I've been wanting to blog about it because writing is very therapeutic for me, but I haven't been able to gather my thoughts enough to clearly convey how I feel. I've written this post a dozen times, then deleted it. I have so many emotions running through me and I don't want to upset or offend anyone or appear like I think this is the worst thing to happen to anyone, ever. Trust me, I am well aware that this is not at all the case.

Anyway, back to the diagnosis. We suspected that something was wrong back in October or November. Urban was showing some of the signs. By the way, for awareness sake, some of the signs are excessive thirst, frequent urination, fatigue/drowsiness, irritability (aren't all 2 & 4 year olds moody?) etc. "Lucky" for us, since Jared is also a type 1 diabetic (diagnosed when he was 6) we're very familiar with the signs and also have all of the supplies to check blood sugar. We've always periodically checked our kids' blood sugar levels anyway because quite frankly I was a bit paranoid that one of them would be diabetic. At least all that worrying wasn't for nothing. When we check one of them we just check all 3 to be safe and fair. At this time Addison's was right in target range, between 80-120 and Urban & Delilah were both in the 300's. So I called their doctor and we got them in the next day for an A1C, which checks the average blood glucose level over about a 3-4 month period. Well, their blood tests came back normal and their doctor said the high numbers at home were probably attributed to the fact that we had eaten dinner not too long before testing them. Jared and I were not satisfied. We both felt like something was going on. As I said, we are both very familiar with the disease and while we are by no means experts, we do know our kids and something wasn't adding up. So we kept a close eye on them the next couple of months and still checked their blood from time to time.

Fast forward to that awful Thursday in January. I was out & about doing some running around with the younger kiddos while Addison was at showstoppers. When I got to showstoppers to get Addison, Urban told me he had to go to the bathroom. We went inside so he could pee and I noticed he was already wet. Well, luckily we were on our way home anyway. Despite already having gone in his pants, he still had to go. On the way home he told me he needed to go again, so I stopped at a store so we could run in for a potty break. Then between there and home he said he had to go again & couldn't hold it. At this point we were just a few blocks away. As soon as we got home he ran inside to pee again, for the 4th time in about a half hour period. Once I got in the house I just looked at Jared and said we need to check his blood. We got out the meter and checked all 3. Addison's was perfect as always. Urban's blood was in the high 400's and Delilah's just said "hi" which means it was over 500 because that's as high as the meter goes. Jared and I looked at each other. We knew. There was no doubt this time, no explaining the high numbers away. They are diabetic. But both of them, at the same is that possible? I kept trying to convince myself that it couldn't be right. What are the chances? We went straight to the ER since it was after hours. The doctor got some information from us then said that it seems very unlikely for both of them to have this happen at the same time. While we were talking the nurse tested their blood with their high-tech machine and showed the results to the doctor. The two of them exchanged a glance that said it all. Yes, they have diabetes. Both of them. Both of their levels were in the mid 500's. A few more blood tests were done to confirm the diagnosis and they got all of our paperwork sent over so we could be admitted into Primary Children's Hospital in Salt Lake for the weekend.

Jared & I finally broke down. Even though we knew, having it confirmed felt like someone socked us in the stomach as hard as they could. Jared felt guilty, like it's his fault since he's diabetic. I was devastated. I always felt like I would have a diabetic child. I didn't think I would have 2 or that they would be so young or that it would happen at the same time. Not that having it happen at the same time is any worse than if they were diagnosed years apart, it's just a huge shock! It's actually probably a blessing. Let's call this blessing #1. Sadly, I have to keep reminding myself that we have seen so many tender mercies throughout this whole ordeal. At least we got both of their hospital stays out of the way in one weekend. Jared slept in Urban's room with him and I slept in Delilah's room with her. We could go back and forth as much as we wanted, but they kept the kids separate so they didn't get their records & supplies mixed up and so they didn't feed off of each other if one of them was freaking out about a shot or getting a finger poke or something. Addison was able to stay with my sister for the weekend which was another huge blessing. Blessing #2! Addison and her cousin Avery are the same age & BFF's. They all made her feel like she was on a fun vacation rather than feeling like we didn't have time for her that weekend or like the other 2 kids' needs were more important than hers. It was essential to me that she felt special, but I'll talk more about that later.

A friend of mine left a comment on my Facebook page that I hadn't really even thought of but it is very comforting. She said "at least they will be able to help each other out, when they get a little bit older." I never thought of the positive side of having 2 diabetic children. Let's call this blessing #3. Each of them will always have a friend who knows exactly what they're going through. They'll be able to sympathize with one another, comfort one another, share their frustrations with one another and stick up for one another. Siblings are truly such a special blessing. Not to mention, we probably would have never picked up on the signs with Delilah if we were not already concerned about Urban. She is still so young that I don't pay much attention to how much she drinks. She spills half of the liquid out of her cups most days anyway. Whereas I noticed how thirsty Urban constantly was. He was always asking for something to drink or going to the bathroom to fill up his cup with water. Also, since Delilah is still in diapers it's not as easy to determine how often she pees. It's pretty obvious when your 4 year old disappears to go to the bathroom 5 times within an hour. I don't even pee that much when I'm pregnant!

Along those same lines, it is a blessing for them to have a diabetic father and me a diabetic husband. Look at that, we're already up to blessing #4! When we say we do things around here together as a family or not at all, boy do we mean it. =) As much as I wish that none of them had this awful disease (ugh, I hate that word...let's call it a chronic medical condition, shall we? As if that's any better!) what a wonderful support system they have in each other. Jared has been my rock. I would be an even bigger basket case if this was completely unknown to us. We already had so much information programmed into us. We just had to fine tune it to fit the specific needs of our precious little ones. He was never afraid to just get in there and do what had to be done. I was afraid to give them their shots at first. It didn't help that Lilah cried every time I did it. She was fine if it came from a nurse or daddy, but I think it just hurt her little feelings that mommy would dare do such a thing. I was still in a bit of denial while we were in the hospital. Neither of the kids were eating much and they're still in their honeymoon phase (which means they're pancreas' do still produce some insulin some of the time) so they didn't need much insulin or they kept going low. I kept telling him that maybe they're not diabetic or at least one of them. Maybe they were misdiagnosed. After all, we couldn't really have 2 diabetic children, right? He would very lovingly assure me that of course there is always a chance, but not to get my hopes up. Once we got home and they got their appetites back and I saw their numbers going all over the place, any hope of a misdiagnosis was gone. I must now come to terms with our new lives.

This is getting depressing. Moving on to blessing #5. We caught it early. We have A LOT of diabetes on both sides of our families. From parents to grandparents to aunts & uncles to cousins. Both type 1 and type 2 diabetes run around our families like crazy. Now this is not the blessing, mind you. I've already talked about how familiar we are with the d-word, but I didn't count it as a blessing. We are very blessed to have caught it early. Some kids are sick for months or have to stay a very long time in the hospital because they have gone undiagnosed for so long. This can cause serious long term damage to other vital organs. Luckily, we were a bit hyper-sensitive about the matter and caught on right away. B-L-E-S-S-I-N-G! Not only that, but our understanding support system just multiplied exponentially.

Now I don't want you all to think I'm over here sitting on my high horse because I'm so wonderful that I just look at the positive in everything. WRONG!!! This is so not the case. I have to make a conscious effort to focus on the blessings otherwise I find myself wallowing in self pity. Some days I can't bring myself to be positive. Some days, quite frankly, I don't care what the blessings are. This sucks beyond anything I can explain in words. And sometimes I think the negatives far outweigh the positives.

Remember earlier when I said I feel alone? Seems quite impossible now doesn't it? What, with the hundreds of diabetics I seem to be in contact with. You'd think I have a pretty good grip on things. Well, educationally I do. I pretty much understand the ins and outs of this. I still like to research & read up on things. But I haven't quite figured out how I'm supposed to act or feel. This has broken me down in every aspect of my life. Physically, emotionally, spiritually and mentally I am broken & exhausted. I feel like I'm not allowed to be upset by this because I am so familiar with it and already surrounded by it. Like it shouldn't be hard for me. But it is hard and I am upset and it's not okay. No parent wants to find out that something is wrong with their child, no matter what it is.

Then I feel bad because I get irritated at the stupid things people say. I know they're trying to help and the things they say probably aren't stupid, I'm just sensitive and emotional. I KNOW that it could be worse. I AM grateful that it's not something like cancer or a heart condition. I REALIZE that it's not a death sentence. I KNOW that my kids can live long, happy, healthy lives as long as we take care of it properly. No, I COULD NOT HAVE prevented this by having my kids on a no sugar diet before hand and I CANNOT cure it by having them on one now. YES, IT IS A BIG DEAL having 2 of my kids diagnosed even though I already have a diabetic husband. It's not really a "the more the merrier" type of thing here. And NO, I DON'T CARE about your diabetic cat! I know I sound horrible and I'm sorry. My intent is definitely not to offend. I'm just trying to be real.

As a mom I think of EVERYTHING that goes along with this. Not just the medical side of things. I have not slept well since we found out. In the beginning I was waking up around 2 in the morning to check their blood sugar levels. Now that they're more controlled I don't really need to check their blood in the middle of the night but I still wake up fearful that maybe they've gone low. Jared can usually feel when his blood sugar is going low but sometimes when he's in a deep sleep he doesn't wake up. There have been about 10 times in our marriage when I have woken up to him convulsing beside me. His blood sugar has gone so low that he shakes uncontrollably and is not able to talk or move to get himself something to eat, or do anything at all. Let me tell you, it scares the hell out of me. I have to force juice or something into his mouth to bring him out of it. I am terrified that this will happen to my children one night. Only I won't be lying next to them to notice. I stay awake thinking of how this will effect them in school, during puberty with their hormones going crazy, Urban on his mission, Delilah when she's pregnant. I think of the conversation they'll have to have with their future spouses telling them that there's a good possibility one of their own children will be diabetic because apparently we have a freakishly strong genetic link in our family. I know they'll be fine and I know that all of these things will work themselves out but I can't help but worry & stress. I know as time goes on my concerns will no longer keep me up at night. By then we'll have new things to worry about I'm sure. But for now, I'm the mom and my heart breaks a little every time they get a finger poke or a shot because I know this is not how life should be for them. They'll never know life a different way. They're so young that this will always be "normal" for them. But I know that a child should not have to put so much care & effort into staying healthy. Urban can already check his blood all by himself and Lilah just needs a tiny bit of help. I haven't been brave enough to let them do their own shots. Luckily they haven't asked yet. They are such troopers. They are handling everything so well. Better than me I think

Addison is such a huge help as well. I think about and worry about her just as much. Of course we are so grateful that she is not diabetic. She's also said how glad she is that she doesn't have to do shots. This is blessing #6. At least not all of them are diabetic. Truthfully, if one of them was to be spared it's probably best that it's Addison. She doesn't seem to handle pain & sickness quite as well as the other 2. She's a bit of a drama queen. I know that Heavenly Father is mindful of this because she is my most healthy child. She rarely gets sick and this is a blessing. I still worry about how she's handling everything though. I know in her little 6 year old mind she's not thinking "boy, I'm sure lucky that I don't have this chronic medical condition" she's thinking more along the lines of "man, the other 2 sure are getting a lot of time spent on them and a lot of attention from mom & dad and everyone else". I really don't want her to end up resenting her brother & sister for something they have absolutely no control over and would give up in a second if given the choice. I know this can happen among siblings. It's probably the issue I'm most concerned with at the moment. I will not let this happen if I can help it. I am determined to make her feel just as special and loved as Urban and Delilah...because she is. We've taken her on a couple dates with just mommy & daddy and she got to have her ears pierced while grandma was along. She has been faking being sick & acting up a little bit in school but we're getting a pretty good handle on it. It's nothing major and I know it's just for the attention. It's all been since that dreadful day in January.

My greatest blessings by far are #'s 7,8 &9. Which are really my number one. Addison, Urban and Delilah are the reason I appear to be handling things so well. They are amazing. Above all, I feel so, so very blessed to have them here on earth with me regardless of their medical conditions. I am so blessed to have their love even when I make so many mistakes. I'm sure I am messing them up royally, but for now they don't seem to notice and love me anyway. They teach me lessons of gratitude, kindness, patience & love every day. They also drive me a little crazy every day, but hey, at least I have something to blame my insanity on. ; )

Despite my earlier complaints, a lot of good has been done & said. We have such wonderful friends and family. I definitely do not have a shortage of kind, comforting words, listening ears, shoulders to cry on or hands that are willing to help in any way they can. Enormous blessing #10. Included in this list are Jared's parents who dealt with all of this 25 years ago with their youngest son. Eventually I'll get around to thoroughly educating everyone around us so they can properly care for my kids in my absence. But for now, a lot of worry & fear is alleviated knowing that these 2 are well prepared to watch after my kiddos. Jared and I have needed our date nights lately and we even got away for an overnight stay at a hotel in Salt Lake one weekend. They even carried on the tradition Jared's aunt Peggy started way back when he was diagnosed of the coveted prize bag. Every time they were poked or injected they got to pick a prize out of the bag. This lasted about the first week or two while they were adjusting to everything just to get over the initial shock & fear of it all. In no time at all they were old pros. Addison got to pick a prize too, for being such a big helper.

Blessing #11-When Jared was first diagnosed in 1986 he received a Priesthood Blessing from his grandfather. In this blessing he was prompted to say that Jared would not have this disease his entire life. I hold onto hope that one day my children and husband and everyone else who has endured this trial will be free from it. My faith has been a huge strength to me. I know that one day they will have perfect bodies with a functioning pancreas and no calluses on their fingers or hard nodules under their skin or blood spots from finger pokes & injection sites. What a beautiful thought.

I know that the blessings in my life are innumerable, but sometimes it's nice to jot down some of the less conventional ones. It helps to keep things in perspective.