A Birthday Wish

Steve suggested that I write Lia’s birthday entry for Without Envy.  I am nervous, as I don’t usually share my writings with anyone.  But, as Steve has told me, sharing your writing is what helps you heal. So here is my earnest attempt.

The other day, Lia was running high so I walked from the High School where I teach and went to the building where the 4th grade is housed to make sure she didn’t need to change her infusion set.  I had the bottle of Humalog in my pocket to try to bring it to room temperature. Her blood sugar was within normal range, so I returned to my school. In the office, a friend of mine asked me if her glucose levels would stable out after being on insulin for a while.  I told her that it would not, that this would be a lifetime struggle for her and that the insulin I was carrying was to keep her alive.  As I said these words, I quickly had to leave the room to compose myself. Although I know very well what the insulin does, it was sobering to say those words aloud to someone else.

Since Lia’s diagnosis, I have not spent a lot of time thinking about how I feel about diabetes. With all the carb counting, figuring of boluses, night time blood tests, and everything else that comes in the day of a parent of a child with diabetes, I don’t allow myself the time to think about it.  I’ve done a lot of reading, mostly about how to manage diabetes, but also some about the long term effects of the disease.  I prefer not to think about the latter because if I do, I can’t function. I don’t want to read about what can happen if her kidneys fail, or her eyesight worsens, or anything else that might result in complications from diabetes.  What I focus on, is how we get her through another day as safely as we can.

I am not angry about the diabetes.  We will probably never know what caused it, though I am confused, since of the three kids, Lia is the one who was breastfed the longest, had the most natural foods given to her from the first days, and was home—unexposed to whatever her two siblings were exposed to in the daycares of their early days. I try to approach the whys in the way that I approach everything else:  it doesn’t really matter why—it just is—so learn to deal with it the best you can. When I get angry, it is at myself for making an error with a bolus or some other asinine thing, and it’s difficult for me to let it go.  But mostly, I feel tired: from all the things mentioned already, but really just tired of not knowing if I am managing things correctly—ever. Despite all our efforts, we never really know whether we’re doing things right, and more often than not, it is Lia who gives us the correct advice.  As a parent, that is frustrating to me.

Lia’s upcoming birthday is bittersweet for me.  I should not be feeling sad for the marking of another year in my little girl’s life, but this will be her first birthday with diabetes.  There is a part of me that wants to give her everything she wants—no matter what it is.  Mostly, I wish so much that she didn’t have diabetes, and of course I can’t deliver.

As I prepared to write this entry, I reread a journal that I kept when Lia was a baby. It is a sporadic account of her early days until February 2004 when she was 2 years and 5 months old.  I wish now that I had kept better records, but time is a precious commodity and I am sure I squandered it doing things like mopping my floors or doing the laundry.  Krista and I got a good laugh reading about when Lia dumped a roll of toilet paper into the commode and then proceeded to give herself a “spa” treatment. Or how when she first began drawing, she would make little swirls with her crayon and then look at it and exclaim, “Whoa!” The recurring theme in those entries is that even as a baby she was strong and independent and that she was, and still is, our comic relief at the house.

Last year, Steve planned her a dinosaur dig party.  He built a pit that looked like a real archeological dig site —complete with “fossilized” bones.  I enlisted one of my students (who is now at Johnson Wales Culinary Arts Institute) to make her a dinosaur cake.  She loved it all and was so very happy that day.

This year, she wanted a sleep over with her friends, so she wrote out the invitations on ruled notebook paper (I had given her some very nice card stock, which she politely refused) and gave them to the little girls at school.  On the morning of her party, I took her to get her ears pierced—something she has wanted to do but has been afraid to go through with. Our dear friend, Jessie, artist extraordinaire, made Lia the greatest looking Harry Potter cake we’ve ever seen.  Her excitement was a beautiful thing and, lucky for me, Steve captured it in a video so that I can relive that moment over and over.

What I want to do is to make this birthday as memorable as possible.  She’s been counting the days to her birthday for the last six weeks, and while I am not certain that what we’ve gotten for her is exactly what she wants, I know that our little girl will react in the way one might react to winning the lottery—as if she couldn’t imagine anything better.  That’s just Lia.

Happy Birthday, Lia.

Love, Mommy.

7 thoughts on “A Birthday Wish

  1. Franca, there’s not much more than I can say except to echo what’s been written above. But as Bernard commented, I find it difficult to relate exactly to the Parent of a CWD perspective – being a Type 1 diabetic myself for 26 years since age 5, I only know what it’s like to manage my own condition and what my parents have passed on to me, as far as stories. But I know that the support they gave me, as is the support you provide every day to Lia, is what has helped me make it this far. I can’t express how grateful and appreciate I am for that every moment. Your daughter is blessed to have you, as are we for being able to share some online space with you. Thank you for that.

  2. Hi,

    I just found your blog through looking at my site-meter. WOW is all I have to say. I love your posts, the design of the blog, and the content.

    Franca I vividly remember Joe’s first birthday with diabetes. He was turning 4 years old 8 months after he was diagnosed with type1. As we sang “Happy Birthday” to him, I could not help but silently cry. It was such a difficult time in my life and the previous 8 months flooded my mind in small scenes…or clips. I had a very hard time with it. I admire all the parents out here blogging and writing their feelings down so early after diagnosis. I think if I had done that I might have pulled myself together a little earlier than I did.

    Joe will have had diabetes for 4 years next Saturday. It is hard to believe he has had it for more than 1/2 of his life at this point. Sorry for the rambling…just wanted to say “hi” and I am looking forward to reading your story as it unfolds.

    Warm Regards,

    Reyna

  3. It’s hard to put myself completely in your shoes as I’m not the parent of a child with diabetes. Though I’ve seen my children get sick, and struggled with the anguish of that, so I’ve got a preview.

    Today is the 38th anniversary of my type 1 diabetes diagnosis, and so far I’m doing just fine despite many years without pumps or blood glucose meters or much of the technology that’s now everyday.

    It’s impossible to say how Lia’s life with diabetes will unfold. But with your caring support I’ll bet she does extremely well. I’ll hazard a bet that 37+ years from now you’ll just be wondering where the time went and considering all that she’s accomplished.

  4. As others have mentioned, you write beautifully and I’m glad you chose to share your thoughts with us. To me, what you and your husband write is like therapy. Let me explain why…I’ve had diabetes since age 11 and my little sister since age 3. We were diagnosed the same year. When I was a teenager I spent a lot of time with out of control blood sugars and I was very frustrated with my parents because they didn’t know how to help me (I didn’t know how to help me). It never occurred to me that my parents were suffering so much every day worrying about my sister and I. I’m 27 now and finally forgiving them for so many things… As my parents and I look back we see what would have helped us and we can admit what we would go back and change. Honestly, something that hurt me a lot was how my parents lost a bit of their joy (because of the worry and stress diabetes causes). But, being a kid, I felt like I robbed it from them. I wanted them to be happy like before. I also didn’t want to be alone and when everyone had cake and I had sugar free jello, part of me wished they would have just had the jello with me in solidarity. But, I have 4 younger siblings and so things like that were difficult. (These were the days before fast acting insulin). I guess what I’m trying to say is that (for me) the best support was emotionally based. You and your husband seem to be very in tune to Lia’s feelings and work so hard to make her feel special…It is a wonderful thing and something that will help her diabetes in ways not thought possible. As for how you are feeling, I can’t imagine what parents with diabetic children go through… I really can’t. I think you’re all amazing.

  5. This was a beautiful post Franca, thank you for writing and sharing. I am the mom of an 8 year old T1 gal, who was diagnosed at age 6. Every day is tiring. Every day I wonder how she possibly could have ‘gotten’ T1 – she was breastfed for 18 months, she is the 3rd in a line of girls, we have no one in our family with T1.

    Then I realize that thinking doesn’t get me where I need to go with her – to a place where we enjoy each and every day, cause how many are we gonna get? to a place where we plan for her adulthood, cause I am gonna kick this T1’s butt! It so fluctuates. I understand about giving her the best birthday ever. You are a great Mom, Franca, and have such community in your feelings here, amongst other T1 Moms. All I can say, really, is that I understand.

  6. Ah, Franca, this was so beautifully put. If it helps at all I was unable to write for a whole year. I still struggle to accept D in our lives at times. It’s a lonely situation too.
    I smiled at that fantastic image of Lia drawing swirls and saying “whoa”!
    Happy Birthday to Lia and here’s to many, many, many more – all of them with increasingly cool cakes.
    Much love from my little family to yours.

  7. You write beautifully…you should share. I read quite a few blogs a day to get a sense of connection to my daughters future and to ensure that I don’t ever miss a thing when it comes to diabetes. I too have not dealt with my daughters diagnosis. I do carry a lot of anger, but that’s more me and my demons than anything. When she complains about her knees hurting I go blurry with anguish that I have failed her by “letting” her go high…she’s 4, she should not have knee pain. Ever.
    I look at Jack, her younger brother who is going to be 1 next week, and wonder if he’s “next”. “They” have no answers of course and I know that…
    I too am tired, exhausted really. Some of it is the lack of sleep, some of it is the worry, some of it is the constant thinking and discussion required to “keep her alive” as you said. For some reason I can say to anyone that Ellie has Type 1 diabetes. But when I hear it from her lips or someone else says it…my stomach still turns a bit. It’s only been 7 months. We have plenty of time to explore I guess…plenty of time is a good thing…and that’s what keeps me from going over the edge.

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