A rarity-two posts in one day. But, I don't want to forget tonight.
It was an ordinary night. I was making dinner. The hubby was still at work. Jess left to go upstairs and I didn't even notice.
"Can you come here mom?" I hear from upstairs.
And, there she is. She has the site change all set up and she is holding it on herself about to press the button. She has done this but once before, and it was very directed by myself. Her fingers technically pushed the button, but they were under mine and there was a lot of coaxing.
"I'm so disappointed- I wanted to come downstairs and tell you I did my own site change." "But, then I decided I wanted you here for this. I'm so scared mom- I'm shaking." And, she is. Her whole body is trembling, especially her little hands.
"I can do this," she says. "I'm wearing my bracelet." She is wearing an "I Can Do This" bracelet from the Friends For Life conference (The "I Can Do This" project is amazing-check it out!) "YES, you can," I reiterate.
And, she does. The site goes in. I truly don't think I have ever seen her so proud. She jumps up and down screaming, hugging me tight. She calls daddy at work. She runs downstairs and she and Courtney do "the happy dance." I am so incredibly proud of her. And, more so - I am so incredibly happy FOR her. What a huge hurdle. What a huge step towards independence.
And, for one split second I feel a bit of pain. I have done so many site changes for her. I have loved being able to take this one part of the burden away from her just a bit. Have I done my last site change?
The thought passes as quickly as it came. Happiness floods me.
And, my sweet little girl says "Mom, if I'm tired or just don't want to do one---will you still do a site change for me?" "Sweetie- even if you are thirty years old and you call to tell me you're tired and sick of it and you just need a break-I'll be there." And we share the sweetest hug.
I'd like to think this has been a life changing summer for Jessica. We found the Children With Diabetes support network and so many amazing, amazing people. She knows we have already registered for next year.
We have had a wonderful babysitter who happens to be a college student with Type 1 with us. I can only imagine the comfort this has brought Jess.
I hope these memories and experiences are enough to help her through this year. She'll be the only Type 1 kid at her school this year. The only other Type 1 having gone on to middle school. I know it is lonely. And, it is no fun to be different. But, she is also but a phone call or email away from so many who support her now---so many who know just what it is like.
We have her diabetes appointment Monday. As usual I fear the "mommy report card." But, I am also glad it is still mine to feel guilty about. I dread the time when she takes ownership and feels the guilt and frustration that my husband and all other Type 1 friends I have talked to feel when their HgbA1c is not up to par. I try to remind myself that we have accomplished so much this summer. Even if her number is not at goal, it can not take away from the hurdles we have jumped.
I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.
And, of course, it is by no means meant to offer medical advice.
Thursday, July 26, 2012
I was bombarded by booth after booth and saw many new and exciting products. I spent at least a half hour drooling over the Tandem T-Slim insulin pump and wishing I had enough money that I could surprise my husband with it. But, more than that it gave me hope for what is yet to come. If Jess can have something like this in high school I doubt she will be as bothered carrying an insulin pump. For those of you that haven't seen it---check it out. It is smaller than an iPhone and looks almost like one, complete with a touch screen.
And, then I saw it. The One Touch Verio IQ. This little meter is amazing. First of all---it is small and light. You can barely tell you're carrying anything. It has this nice color screen as shown above that lights up. And, it even has a sunshine on it! How cheerful is that? Yes- you have to prick your finger now. And, yes that sucks. But, look---the sun is shining and it is a happy day. Subliminal? Maybe. But, I find myself feeling a bit more cheery every time I see the screen. One of my favorite features occurs in the dark of night. Hundreds of times I have tip toed into my daughter's bedroom and used my cell phone as a flash light to try to see what I am doing to test her blood sugar. I have missed many a time, accidentally getting blood on her sheets or pajamas instead of the testing strip. This meter has an amazing light. I can see everything! And, that little sunshine is there cheering me up a bit in the dead of night. But, here's the best part---it tracks the blood sugars and alerts you to possible patterns with a friendly message. Whoever invented it was smart enough to not come up with messages such as "Hey dumb shit---you've been high every day after breakfast. Do you think you should change your breakfast I:C ratio?" No- this meter tells you in a very friendly manner that it is tracking a pattern you might want to be aware of (without reminding you that you really suck at downloading your daughter's meter on a regular basis, and that it often takes days for you to think- "huh- I think she's been high every morning after breakfast.") This is even more important for low patterns! I am already seeing tighter control for Jessica. Its like partially being able to delegate all the analyzing that is involved with managing this disease. Now- if I could just teach it to cook!
Does it have down sides? Sure. For one, it doesn't remotely control her insulin pump. So, after I check we either manually enter her blood sugar into her remote meter or pump. So far, even Jess likes the Verio so much that she is only happy to do this.
I hear it downloads to Diasend as well. We have an endo appointment Monday so I guess I better figure that out this weekend. And, yes, the last time I downloaded to Diasend? I think about three months ago before her last endo appointment. Sigh.
Thursday, July 19, 2012
|Beach Party and Banquet|
I have been swamped since returning, but in spare moments have wondered...how could I even use words to express the enormity of this conference?
Enormity in so many ways...Size: over 3000 people all living with Type 1 diabetes in one place...Emotions: I don't think I have ever cried and laughed so much in one week...Learning: so many educational sessions all running at once-at times it was hard to choose just one...Fun: from the banquet to the beach party to the exhibit hall to Sports Central-the fun didn't stop...Connections: we made friends and built bonds that we hope will continue year after year. Gone was the need to spend time explaining Type 1, and how we have to live, and please don't get that deer in the headlight look...instead instant connections were formed...all of us living with this shared bond. It was like coming HOME.
So many moments fill my memories...sitting at dinner one night in the hotel at a Hibachi restaurant and looking around the table to realize everyone at the table was from the conference and living with Type 1. All the kids (and adults!) checking blood sugars and taking insulin at the same time. Green and orange bracelets everywhere (the bracelets of belonging...green for having Type 1 and orange for those who love them.) Looking around the hotel pool and seeing not only a sea of bracelets, but also dexcoms on childrens' arms and pumps everywhere. Having moms I don't even know offering my daughter glucose tabs when she was low in the pool. Looking around the hotel and seeing test strips everywhere...and they weren't ours! Talking with other moms and hearing over and over that we share the same fears. Getting to know another woman who is also a spouse and mom to a Type 1 and finding out we have so much in common in our unique roles as dual caretakers. Watching Sean connect with so many other Adults with Type 1's (there is an entire track at the conference for Adults with Type 1.) He has spent so much of his life with diabetes in complete isolation...it was almost like watching a butterfly emerge from a cocoon as he bonded with these wonderful adults. Meeting so many celebrities living with Type 1 and watching the stars in my daughters eyes as they interacted with them. Going from booth to booth in the exhibit hall and having a chance to see new insulin pumps up close, taste different glucose tabs, see new tools to make life easier. They even had a Build A Bear exhibit to make Lenny the Lion who has Type 1 with parts of his body all ready for kids to practice insulin shots or pump/Dexcom insertions. Learning about Coco-the Disney character who has Type 1. Seeing the convention center covered with Children With Diabetes posters, and collages of all the kids. Meeting so many heros...young and old. I am simply in awe of the children and adults living with Type 1. For all of these moments, there were hundreds more. It was quite simply like feeling like you finally found HOME.
I was not expecting the complete pit of emptiness that enveloped me the day the conference ended. We made the mistake of staying one extra day. We watched the orange and green bands slowly disappear from the hotel. It was culture shock to walk in the lobby the next morning and not see a single green or orange bracelet. Likewise, we made the mistake the night the conference had ended of walking through the convention center to get our car. All the posters and decorations were gone, and in their place the ones for the new conference starting. I haven't felt that empty in a long time. This was shared by every member of my family. All four us forced smiles and tried to cheer each other up.
This week Jessica's green bracelet finally fell off. The look of devastation on her face was not easy to take. I asked her why she was so sad the bracelet had come off. She said "Because it meant I am not alone and it reminds me of all the happy memories of the conference." I had her tape it to her desk where she can look at it and remember...until next year...when we return HOME.
|Lenny the Lion with his insulin pump and Dexcom|
Tuesday, July 3, 2012
I know you are fine. I know we are lucky we had seven years diabetes free---so many I have met did not even get that. The painful moments are few and far between now. You are growing up into such a beautiful young lady. I am so proud to be your mom.
I can't help but wish you remembered "before." We had such fun times. There were times I let you eat as much candy as you wanted, times you drank tons of the chocolate milk you love, times I didn't ask you to check your blood sugar, or ask "are you high...are you low?" Times we just took off for fun "mommy days" without the big diabetes backpack following along. There were times every third day didn't involve the site change you still hate so much. Times you didn't have to wear all these gadgets around your waist. But, I also know maybe it is easier you don't remember.
You will be ten soon. And, despite the drop of sadness I feel, I remind myself that a very short time ago you would not have turned ten. And even though insulin is not a cure, it has kept you alive with your smile that lights up the world. Happy Birthday baby girl. I love you more every single day.