I like to think that I am fairly strong when it comes to being a mother of a T1 child. I like to think that for the most part, I have my shit together and I'm able to keep a fairly level head over the whole thing.
But I'm only human, and sometimes I am NOT strong and I am NOT level headed. There are days when highs and lows happen and I don't get too emotional and then there are days where I just can't keep my emotions in check. Granted ... That's human nature for anyone - a T1 mom or not.
I had a moment last night that I feel like I need to share ... For my own benefit of getting it out there instead of keeping it bottled up inside. After all, this blog is my therapy.
Trey had a good supper, good sugars afterwards and so we had Twist Cone. Trey gets the baby size Lemon Italian Ice in a dish and I administer insulin to cover it. It's tricky - sometimes Italian ice spikes him something terrible and other times it doesn't phase him at all. Last night it didn't phase him so naturally his sugars dropped.
As I lay in bed watching his CGM on my phone drop lower and lower, I get up and get a couple of cheese crackers. I sit at the foot of his bed, watching him sleep soundly, and all of a sudden I'm hunched over into his comforter, sobbing. I was angry and I said, "Why my Trey? Why can't he be a healthy kid who doesn't have to go through any of this shit? What did we do to deserve to have this disease try to ruin our lives and take so much away from my Trey?? He's always been such a good kid .... Why can't it be some little shithead? WHY???????"
I sat up, gathered myself and woke up my sleeping boy by telling him "Buddy, your sugar is low and I need you to sit up and eat a couple crackers." I continued to sit at the end of the bed, watching him chomp on crackers at 11:15pm with his eyes still closed as tears ran down my face.
It was just a moment. A weak moment. A moment of truth ... My son isn't healthy. I am tired of the highs and lows. I am tired of waking him to make him eat. I am tired of the constant 24 hour care he needs. I'm tired of the simplest things - golf lessons - being something bigger and more of a big deal that it really should be. I'm tired of lugging around his diabetic kit in my purse everywhere we go. I'm tired of asking him what his number is or asking him to poke his finger. I'm tired of counting carbs. I'm tired ... Oh GOD am I tired of telling him "No, you can't have that right now." When he wants a snack/piece of candy/etc. I'm tired of people thinking his CGM is a phone and tired of the judgement that comes along with that statement. (Truthfully ... If I choose to give my 6 year old a damn cell phone it's really no business of anyone else's ... Correct?? Judge away!) I'm tired of looking for new foods for him to try but yet I'm tired of making the same meals just so he can have somewhat stable sugars. Right now, I'm tired of educating people. I'm tired of no one understanding what life as a T1 mom is all about. I'm tired of people asking "How are Trey's sugars?" But yet I am tired of people that SHOULD be asking ... Not asking.
So, I guess it's safe to say I'm pretty angry right now. I've been angry at T1 before. Then I accepted it for what it was and then I fought with everything I had to get our story out there and vowed to help other's who may be going through the same bullshit we are. I've been sad ... So sad ... More than I can even try to explain. I've been desperate for a break, for a glimmer of hope, for a good day, for a 24 hour period with amazing sugars. I've been inspired by so many people who are living their dream and showing me that Trey CAN lead a normal life someday. I've been touched by the friends and family who try to understand, offer any help and for the fellow T1 families we have met over the year.
This journey ins't easy, friends. It's changed my life. I've lost people but I've gained even better people. Being a parent is hard ... Being a parent changes you. It truly does. Being a parent of a T1 child is something I just can't even explain as I feel it's something you have to go through yourself to fully grasp just how hard it is. I've always prided myself on being a strong, independent woman ... Well, I am not so sure I really am her anymore. I'm different because I have to be.
Wednesday, June 7, 2017
Tuesday, June 6, 2017
Yet another 1st
We are on week three of Summer Vacation and I wish tomorrow was August 22nd so the kids can go back to school! There's something to be said of staying home with your kids all day long. On top of me working, I'm also mom and sometimes the combo of them sucks! I have a list of chores for each child to do along with a daily chart that says what they should be doing at different times of the day so they aren't watching 10 hours of TV or spending 5 hours on the iPad/kindle. That chart works about 70% of the time and the other 30% I'm either a bitch or I just flat out don't care by that time. Depends.
Summer also means weather change. As you know, South Dakota is already looking at temps in the 90's and we even hit 100 last week. YUCK!! That's just too damn hot already! While most people send their kid to the local swimming pool or have them run through sprinklers in the yard to cool down - it's not that easy with T1.
T1 complicates everything. EVERYTHING.
Last week Trey had numbers around 150. He went outside for 45 minutes and ran through the sprinkler and when he came in he was over 300. So you give a correction dose of insulin to get him down and then wait to see what happens. You guessed it ... He dropped and he dropped fast. Thankfully he was home so I could keep an eye on it and do what needed to be done before we were looking for Glucagon.
Don't get me wrong - any time of the year can be hard for whatever reason. But the summertime really sucks. You want them to be able to be outside and be active. You want them to be able to go hang with a buddy for the afternoon to get them out of your hair. You want to be able to drop them off at the pool and say "See ya in an hour!" T1 .... That damn thing called T1.
Trey started golf lessons a couple weeks ago. It's for an hour every Satruday until the end of June. He really enjoys it, but this last week he asked his dad to not follow him around the course - to just stay over with the other parents and watch from afar. I don't know what Jordan's reaction or thoughts were on this, but it really made me sad. The reason Jordan follows him from station to station is to keep an eye on Trey's sugar. The first week the CGM popped out and fell on the ground so we didn't know what sugars were, but this last week he was running on the lower end, was dressed too warm and it was 90* outside already so we had to keep a close eye on him. I don't know if a kid asked Trey why his dad was there or if it was just Trey on his own - but obviously he wanted to be a 'normal' kid and not have mom/dad watch every move. I sense this is going to happen more and more and while I respect him ... It's going to be hard to let go.
We had another first. Something I have said forever that I knew would happen - I was just hoping it woudln't be this soon. But then I stop and think that we have been at this for a year, he is growing, he is 6 and he is smart. He snuck food. Candy, none-the-less. UGH. We don't really have candy in the house anymore but Jordan picked up a bag of licorice at the store and had been munching on it. I'm doing that thing called working and Trey buzzes. He comes down and I smell his breath as he talks to me and I ask, "Were you eating something?" He swears he wasn't. I kept asking questions and it didn't take me long to know that in fact, he DID eat licorice and he WAS lying to me so I played along a bit. I hope he is always a bad liar because I could tell immediately he was not being honest. Delanie ... She's pretty good at hiding it. Trey isn't. So we had the discussion that if you want licorice, you have to ask and if you you don't ask, but eat it anyway ('I didn't ask because you would say no!") you have to be honest and tell me before you're over 300 so I can give you insulin for it. He ate just half a piece of licorice and he shot up quick. Hopefully a lesson learned for all of us and that sneaking stuff is few and far between.
Summer also means weather change. As you know, South Dakota is already looking at temps in the 90's and we even hit 100 last week. YUCK!! That's just too damn hot already! While most people send their kid to the local swimming pool or have them run through sprinklers in the yard to cool down - it's not that easy with T1.
T1 complicates everything. EVERYTHING.
Last week Trey had numbers around 150. He went outside for 45 minutes and ran through the sprinkler and when he came in he was over 300. So you give a correction dose of insulin to get him down and then wait to see what happens. You guessed it ... He dropped and he dropped fast. Thankfully he was home so I could keep an eye on it and do what needed to be done before we were looking for Glucagon.
Don't get me wrong - any time of the year can be hard for whatever reason. But the summertime really sucks. You want them to be able to be outside and be active. You want them to be able to go hang with a buddy for the afternoon to get them out of your hair. You want to be able to drop them off at the pool and say "See ya in an hour!" T1 .... That damn thing called T1.
Trey started golf lessons a couple weeks ago. It's for an hour every Satruday until the end of June. He really enjoys it, but this last week he asked his dad to not follow him around the course - to just stay over with the other parents and watch from afar. I don't know what Jordan's reaction or thoughts were on this, but it really made me sad. The reason Jordan follows him from station to station is to keep an eye on Trey's sugar. The first week the CGM popped out and fell on the ground so we didn't know what sugars were, but this last week he was running on the lower end, was dressed too warm and it was 90* outside already so we had to keep a close eye on him. I don't know if a kid asked Trey why his dad was there or if it was just Trey on his own - but obviously he wanted to be a 'normal' kid and not have mom/dad watch every move. I sense this is going to happen more and more and while I respect him ... It's going to be hard to let go.
We had another first. Something I have said forever that I knew would happen - I was just hoping it woudln't be this soon. But then I stop and think that we have been at this for a year, he is growing, he is 6 and he is smart. He snuck food. Candy, none-the-less. UGH. We don't really have candy in the house anymore but Jordan picked up a bag of licorice at the store and had been munching on it. I'm doing that thing called working and Trey buzzes. He comes down and I smell his breath as he talks to me and I ask, "Were you eating something?" He swears he wasn't. I kept asking questions and it didn't take me long to know that in fact, he DID eat licorice and he WAS lying to me so I played along a bit. I hope he is always a bad liar because I could tell immediately he was not being honest. Delanie ... She's pretty good at hiding it. Trey isn't. So we had the discussion that if you want licorice, you have to ask and if you you don't ask, but eat it anyway ('I didn't ask because you would say no!") you have to be honest and tell me before you're over 300 so I can give you insulin for it. He ate just half a piece of licorice and he shot up quick. Hopefully a lesson learned for all of us and that sneaking stuff is few and far between.
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