Jess and I have been working so hard on her diabetes these past few weeks. It is an immense amount of work but she has rarely been over 200. I have been thrilled...she has felt good...and I have just been hoping we can continue it so that her next Hemoglobin A1c kicks butt.
And, then tonight I checked Facebook. A seven year old died in bed of hypoglycemia.
The "Dead in Bed" syndrome that every Type 1 parent I know fears.
This is the down side of good control.
What are we as parents to do?
If we don't aim for strict control we deliver our children to adulthood with years of the devastating effects of hyperglycemia. Jess was diagnosed at seven. By the time she is eighteen she will have had Type 1 long enough to have retinopathy and other complications starting. She is too young to understand this in detail, and too young to fully manage her disease.
But, by working hard towards strict control, the risk increases that she will have a fatal low.
I don't know fear greater than putting a child to bed and praying they will be alive in the morning. No matter how positive I remain it is always there. Those first steps past her bedroom in the morning when I pause at the door to look for the rise and fall of her chest.
My heart absolutely aches for this family.
We need better technology. The FDA must stop the slow approval of life saving devices. We need the artificial pancreas with its auto shut off functions when a low blood sugar is detected. We have been waiting on technology here in the United States that Europe has had for months. It is inexcusable.
Wednesday, August 29, 2012
Sunday, August 26, 2012
Back To School Jitters
Sending a child back to school with diabetes is no easy feat. I remember hearing a story of a T1 child that went to school and the preparation was a bag of candy that was given to the teacher with the instructions "If he acts funny, give him some of this." I sincerely hope that story is nothing but a story, and my heart breaks for that child every time that I hear it.
I have prepared to the best of my ability. The nurse has all of Jess's supplies. The teachers have their "crash course" sheet on Type 1 diabetes, and their forms I made for the unexpected substitute, the letter for the parents in Jessica's class that will largely be ignored (kindly asking them to let us know before unexpected treats are brought in...). I reviewed all of the laws regarding a 504 from the Office of Civil Rights, and had a meeting with the principal, counselor, teachers, nurse, and district psychologist that went better than I could have dreamed. Plans are underway for the 504 that will protect Jessica's safety, and allow her to reach the potential she would have had if her pancreas had not gone on strike.
Jess and I have spent the past two weeks meticulously managing her diabetes. She has been a trooper brainstorming with me ways to get her numbers in line before the start of school. We have kicked butt and I have wished her Hemoglobin A1c could be based on two weeks and done tomorrow.
And, the big day is tomorrow.
So, of course all hell breaks loose.
She wakes today with a blood sugar of 64. Just when I thought I had nailed her overnight basals. She levels out before breakfast only to rise to 302, followed by 397 after a correction. Just as I am about to pull the site, she plummets to 81. She then has repeated lows, alternating with highs. All of this with her barely eating a thing.
"I'm not hungry" she tells me. "My stomach is a wreck." We spend a long time talking. Of course, she is scared to return to school. The lone T1 in a sea of working pancreases. Not to mention the normal start of school jitters every child is prone to.
I don't know if that is why her numbers have been a mess today, but I do know it hasn't helped. "What if my numbers do this tomorrow?" I reassure her we will work through it just like we always do, and she won't be alone.
I know she'll be fine. She is so brave. I struggle with stage fright and public speaking, yet watch her practice her power point that she will give to her class to explain what diabetes is. I know she will weather this transition from summer to school once again, and emerge stronger than before.
The transition is hard for me too. She has been safe this summer---watched closely by myself or her wonderful babysitter with Type 1. She attended CWD where she spent the week in a cocoon surrounded by other Type 1's. It is hard to watch her return to the "real" world where she is alone and I can not protect her.
Yet, I know this is her life story. It will form her and make her into the adult that I am beginning to see glimpses of. These back to school jitters will be just one of many obstacles she will have to encounter. And, she will. Broken pancreas and all.
I have prepared to the best of my ability. The nurse has all of Jess's supplies. The teachers have their "crash course" sheet on Type 1 diabetes, and their forms I made for the unexpected substitute, the letter for the parents in Jessica's class that will largely be ignored (kindly asking them to let us know before unexpected treats are brought in...). I reviewed all of the laws regarding a 504 from the Office of Civil Rights, and had a meeting with the principal, counselor, teachers, nurse, and district psychologist that went better than I could have dreamed. Plans are underway for the 504 that will protect Jessica's safety, and allow her to reach the potential she would have had if her pancreas had not gone on strike.
Jess and I have spent the past two weeks meticulously managing her diabetes. She has been a trooper brainstorming with me ways to get her numbers in line before the start of school. We have kicked butt and I have wished her Hemoglobin A1c could be based on two weeks and done tomorrow.
And, the big day is tomorrow.
So, of course all hell breaks loose.
She wakes today with a blood sugar of 64. Just when I thought I had nailed her overnight basals. She levels out before breakfast only to rise to 302, followed by 397 after a correction. Just as I am about to pull the site, she plummets to 81. She then has repeated lows, alternating with highs. All of this with her barely eating a thing.
"I'm not hungry" she tells me. "My stomach is a wreck." We spend a long time talking. Of course, she is scared to return to school. The lone T1 in a sea of working pancreases. Not to mention the normal start of school jitters every child is prone to.
I don't know if that is why her numbers have been a mess today, but I do know it hasn't helped. "What if my numbers do this tomorrow?" I reassure her we will work through it just like we always do, and she won't be alone.
I know she'll be fine. She is so brave. I struggle with stage fright and public speaking, yet watch her practice her power point that she will give to her class to explain what diabetes is. I know she will weather this transition from summer to school once again, and emerge stronger than before.
The transition is hard for me too. She has been safe this summer---watched closely by myself or her wonderful babysitter with Type 1. She attended CWD where she spent the week in a cocoon surrounded by other Type 1's. It is hard to watch her return to the "real" world where she is alone and I can not protect her.
Yet, I know this is her life story. It will form her and make her into the adult that I am beginning to see glimpses of. These back to school jitters will be just one of many obstacles she will have to encounter. And, she will. Broken pancreas and all.
Wednesday, August 22, 2012
Site Change Phobia
Jess and I have been working hard on site changes.
I went to a wonderful lecture at the Children With Diabetes conference that discussed some of the psychological factors involved in the caring for a T1 child, including site changes. I swallowed back tears as he told the audience that one reason diabetes is so hard is that it is a constant reminder that as a parent "you couldn't protect your child." And every blood sugar check, shot, site or dexcom change is just another reminder that we as parents were unable to protect our child. I know he is right. I spent many months after Jessica was diagnosed beating myself up for many ridiculous possible things I decided I had done that had led to this inability to protect her. I only breastfed nine months, I put her in daycare, I gave her too much cows milk, I hadn't fed her an entirely organic diet, and many other absolutely ridiculous ways that I as a parent had failed to protect my little girl. And, watching a child dread site changes and scream when they hurt is a pretty good reminder that I was unable to protect her.
He told us that if site changes were taking more than 5 minutes it was a parent issue, not a child issue. This really made me think, and was a life changing lecture.
In the beginning when Jess was diagnosed and on multiple shots a day she developed this ridiculous routine before each shot. We had fallen into the same pattern with site changes. She has to lay on the bed and go through an entire routine that involves begging "please don't do it until I relax...you can't do it until I'm relaxed"...all the while her anxiety building. The hubby and I have approached this different ways. I have felt the anxiety and anticipation is the worst part, and have inserted the site with no warning. The hubby has let her tell him when to do it with site changes often taking 10 to 15 minutes or more. Neither of us knew what to do or how best to truly handle her anxiety surrounding them.
It took talking to other families living with Type 1 and this lecture to help me understand why. As much as her site changes remind me that I could not protect her, they absolutely kill my Type 1 hubby. As many times as I and others have told him it is not his fault she has Type 1, the guilt remains. It doesn't matter that he rationally knows Type 1 is multifactorial, or that of course he has no control over his genes...the guilt remains. And, so the drawn out site changes are a parent issue, albeit it not one that is at all his fault or a conscious decision.
As luck would have it Jess had a site failure shortly after I heard this lecture. The conference took place at the biggest hotel I have ever been to, and to go back to the room to lie on the bed and do her routine would have taken the whole afternoon. Much to her protests, I told her we were doing the site change in the bathroom. She panicked and was not happy, but we did it in less than 5 minutes! Victory!
When we returned home I took over site change duty. I hate it. But, I know the hubby hates it more. We did well...accomplishing all of them in 5 minutes or less. And, a HUGE moment. Jess did the first one completely on her own.
But, one night I was stuck at work late on a site change night, and somehow we fell into the pattern of the hubby doing them again. The drawn out site changes began again, and she stopped doing them on her own. She had two in a row that hurt and her anxiety escalated. Once again the anticipation and anxiety became the worst part. She once again became her own worst enemy.
It is frustrating and heart wrenching to watch.
I have taken over site change duty again, and I am determined to conquer these fears and anxiety once and for all. I told her we are making a game out of site changes and doing them in a different room every night. Tonight we did a site change in the garage. My hope is that this will break the cycle of her needing to lay on the bed and do her ridiculous routine. I took the Tiger Mom approach earlier this week and told her if she didn't do it herself, I would and I would pick a new spot to try it (she only agrees to her buttocks and is terrified to try any other spot.) I basically yelled at her to "Push the button, push it now!" I hated myself, but she did it and it worked. And, it didn't hurt. Her numbers were thankfully great the next day, and I told her that she must have done one amazing site change. Tonight she said "If I don't push the button myself, you'll do it in a new place?" It is like she needs to hear this to force herself to do it. But, we are making progress. She has done the last two in new areas of the house and pain free. And, in under 5 minutes.
This is such a balancing act. On the one hand I want her to conquer her anxiety and be able to do these hated site changes quickly and painlessly. On the other hand I want her to know that I will always be here to help when she just needs a break, and that she doesn't need to take on this new stage of self-care.
My heart so bleeds for her. I can't imagine how she will do this the rest of her life. I have been exhausted with a too busy work schedule, home responsibilities, and all that is involved in sending a child with Type 1 back to school (not to mention preparing for our first ever meeting with her school to implement a 504 plan.) It has been an effort to come home every night and review all of her numbers and make changes. I am determined to see better blood sugar control as we enter this new school year. I mentally groan when I realize it is a site change night. I am so incredibly sick of it all. There is never, ever a break. Every vacation, every second it is there. I am constantly a cheerleader, telling her she can do it, supporting her on her "I hate diabetes days." It has been almost three years, and enough is enough. I just want it to go away. And, the guilt just fills me. How dare I feel this way? If it is this exhausting for me, how must my husband feel after 23 years? How will Jessica feel as the years march on? I freaking hate this disease.
But, I will keep working. I am determined to help her conquer this site change phobia. I couldn't protect her from getting this, but I will give her the tools she needs to fight it. And, I will stand and fight it with her.
I went to a wonderful lecture at the Children With Diabetes conference that discussed some of the psychological factors involved in the caring for a T1 child, including site changes. I swallowed back tears as he told the audience that one reason diabetes is so hard is that it is a constant reminder that as a parent "you couldn't protect your child." And every blood sugar check, shot, site or dexcom change is just another reminder that we as parents were unable to protect our child. I know he is right. I spent many months after Jessica was diagnosed beating myself up for many ridiculous possible things I decided I had done that had led to this inability to protect her. I only breastfed nine months, I put her in daycare, I gave her too much cows milk, I hadn't fed her an entirely organic diet, and many other absolutely ridiculous ways that I as a parent had failed to protect my little girl. And, watching a child dread site changes and scream when they hurt is a pretty good reminder that I was unable to protect her.
He told us that if site changes were taking more than 5 minutes it was a parent issue, not a child issue. This really made me think, and was a life changing lecture.
In the beginning when Jess was diagnosed and on multiple shots a day she developed this ridiculous routine before each shot. We had fallen into the same pattern with site changes. She has to lay on the bed and go through an entire routine that involves begging "please don't do it until I relax...you can't do it until I'm relaxed"...all the while her anxiety building. The hubby and I have approached this different ways. I have felt the anxiety and anticipation is the worst part, and have inserted the site with no warning. The hubby has let her tell him when to do it with site changes often taking 10 to 15 minutes or more. Neither of us knew what to do or how best to truly handle her anxiety surrounding them.
It took talking to other families living with Type 1 and this lecture to help me understand why. As much as her site changes remind me that I could not protect her, they absolutely kill my Type 1 hubby. As many times as I and others have told him it is not his fault she has Type 1, the guilt remains. It doesn't matter that he rationally knows Type 1 is multifactorial, or that of course he has no control over his genes...the guilt remains. And, so the drawn out site changes are a parent issue, albeit it not one that is at all his fault or a conscious decision.
As luck would have it Jess had a site failure shortly after I heard this lecture. The conference took place at the biggest hotel I have ever been to, and to go back to the room to lie on the bed and do her routine would have taken the whole afternoon. Much to her protests, I told her we were doing the site change in the bathroom. She panicked and was not happy, but we did it in less than 5 minutes! Victory!
When we returned home I took over site change duty. I hate it. But, I know the hubby hates it more. We did well...accomplishing all of them in 5 minutes or less. And, a HUGE moment. Jess did the first one completely on her own.
But, one night I was stuck at work late on a site change night, and somehow we fell into the pattern of the hubby doing them again. The drawn out site changes began again, and she stopped doing them on her own. She had two in a row that hurt and her anxiety escalated. Once again the anticipation and anxiety became the worst part. She once again became her own worst enemy.
It is frustrating and heart wrenching to watch.
I have taken over site change duty again, and I am determined to conquer these fears and anxiety once and for all. I told her we are making a game out of site changes and doing them in a different room every night. Tonight we did a site change in the garage. My hope is that this will break the cycle of her needing to lay on the bed and do her ridiculous routine. I took the Tiger Mom approach earlier this week and told her if she didn't do it herself, I would and I would pick a new spot to try it (she only agrees to her buttocks and is terrified to try any other spot.) I basically yelled at her to "Push the button, push it now!" I hated myself, but she did it and it worked. And, it didn't hurt. Her numbers were thankfully great the next day, and I told her that she must have done one amazing site change. Tonight she said "If I don't push the button myself, you'll do it in a new place?" It is like she needs to hear this to force herself to do it. But, we are making progress. She has done the last two in new areas of the house and pain free. And, in under 5 minutes.
This is such a balancing act. On the one hand I want her to conquer her anxiety and be able to do these hated site changes quickly and painlessly. On the other hand I want her to know that I will always be here to help when she just needs a break, and that she doesn't need to take on this new stage of self-care.
My heart so bleeds for her. I can't imagine how she will do this the rest of her life. I have been exhausted with a too busy work schedule, home responsibilities, and all that is involved in sending a child with Type 1 back to school (not to mention preparing for our first ever meeting with her school to implement a 504 plan.) It has been an effort to come home every night and review all of her numbers and make changes. I am determined to see better blood sugar control as we enter this new school year. I mentally groan when I realize it is a site change night. I am so incredibly sick of it all. There is never, ever a break. Every vacation, every second it is there. I am constantly a cheerleader, telling her she can do it, supporting her on her "I hate diabetes days." It has been almost three years, and enough is enough. I just want it to go away. And, the guilt just fills me. How dare I feel this way? If it is this exhausting for me, how must my husband feel after 23 years? How will Jessica feel as the years march on? I freaking hate this disease.
But, I will keep working. I am determined to help her conquer this site change phobia. I couldn't protect her from getting this, but I will give her the tools she needs to fight it. And, I will stand and fight it with her.
Thursday, July 26, 2012
Hurdles
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.
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.
Kuddos to the One Touch Verio IQ
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
Home
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| 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.
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| Lenny the Lion with his insulin pump and Dexcom |
Tuesday, July 3, 2012
A Drop of Sadness
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.
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