Saturday, April 30, 2011

Fallout

Grace's Type 1 Diabetes diagnosis two years ago has altered the course of her life. She is not the person today that she would have been were she not diagnosed. But this is true for everyone - events happen in our lives that weave their way into the fabric of who we are.

As such, Grace's diagnosis has altered the course of everyone in my family's lives. We are all affected in some way. Lately , it seems, no one more so than Little Sister. She's struggling, and I'm not quite sure how to help her.

It started soon after dx, when we saw a sharp increase in her mood swings and temper tantrums. Little Sister has always been my "go with the flow" girl. But she began to be more of a challenge.

Then, about a month ago, she told me she was having trouble seeing the blackboard at school. With her 8 year old well visit less than a month away, and no reports of headaches or other problems with her schoolwork, I decided to wait till then to have her vision checked. Two weeks ago after a cursory vision test my pediatrician referred us to a Pediatric Optometrist at Children's Hospital.

Last Thursday was the appointment. After an extensive eye exam and administration of dilating eye spray we had to wait 20 minutes for full dilation. I was confused by some of the answers Little Sister gave during the exam, so I had her wait in another room while I talked to the doctor.

"Is she faking?" I asked. "Well, yes and no," was the answer.

Apparently, in a desperate attempt to pull some much needed attention away from her diabetic sister and baby of the family/ only boy brother, she's manifesting vision problems. Of course, that's MY take. The doctor said it seems as though she's under a lot of stress, and that's turning an extremely minor deficit in her up-close vision, one that most children would compensate for and outgrow as their eyes mature, into a far-sighted eye strain. When her eyes are tired, such as at school after reading or writing a lot, when she looks up things get blurry. When she was looking at the letters during the vision exam, at first she couldn't read any of them. After a series of different lenses were used she still couldn't see. Then all the lenses were removed and, what do you know, she mysteriously COULD see the letters.

It's all very confusing and upsetting. The doctor said it's actually quite common. The solution is we're getting her glasses to wear at school with an EXTREMELY low prescription. She'll see a slight difference, but her eyes won't become dependent on them. They're almost like a placebo. Then we go back in August for a follow-up and hope this bit if TLC has helped, and corrected the problem. We've told her that the glasses will fix the blurriness and heal her eyes so she won't have to wear them forever.

I can't help feeling like I'm failing her. She is my light, my heart, my joy, my everything, and yet I've failed to show her enough love. This stupid disease has sucked so much of my time that I've lost track of the needs of my daughter - the one without diabetes.

Little Sister is now a different person because of Grace's diagnosis. I only hope I can get her back on track quickly and help her grow into the amazing person she's destined to become.

12 comments:

  1. So sorry Pam...I know the feeling! My little 3 year old has developed some horrible behaviors since Emma was diagnosed. It is so rough when you cannot be what you want to be to your children.

    I will say that lately I take about five minutes at night and lay down next to him when he is going to bed and that has worked wonders for his temperament. That seems like totally oversimplifying the whole thing, but someone told me that children's little cups fill up fast so maybe that's why that works for him? Good luck with your daughter. You are an amazing mama.

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  2. Geez Pam...I HEAR you LOUD AND CLEAR in this post. I worry and worry and worry some more about Bridget. She definitely craves attention...more so since Joe's diagnosis. I feel the ways that I am "failing" her. It is painful to watch and so hard to figure out.

    My concern about "D" in our lives, leaves me concerned for Bridget more than Joe. Weird, huh?

    Keep up the hard work Mama. You are doing all that you can for your family.

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  3. Yes Pam I too hear you in this post. My 16 year old has had "stomach aches" and has even been to a GI specialist since Bekah's dx. I don't think he is faking but over dramatizing. It's tough to watch and at 16 I'm not sure how to keep his tank full, he acts like he doesn't need his mama. My 13 year old has had a lot of moodiness over the last year as well. She pulled the same stunt at the eye doctor but it was before diabetes was in our life, she just wanted glasses. Her wish was granted this last year when I took her in. Thee beginning of the school year, she wore them all of the time and since Christmas, I rarely see them on her face. When I take the time for one on one time with my kids, even if it's just leaving the rest with Dad while I run some errand with just the one, seems to go a long way. You are an awesome mama, you'll figure this out.

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  4. My son (the younger sibling to my T1 daughter) was so laid back as a baby. She was diagnosed right before his 1st birthday and I wonder if that changed him, too, or if it has any effect on his behavior.

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  5. I hear you dear Pam. Diabetes takes so much from the sibling relationship, sometimes I wonder how we all will survive. You are such an amazing mom to all your kiddos. She will survive this and perhaps there will be a new way of being in the family. I know you all will be stronger for it. It's a shame we all have to walk through fire sometimes, cause that's how it feels. Sending love and hugs your way.

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  6. I echo your heartfelt concerns. It's so hard to find the balance and define the lines.

    I wish I had something insightful to add.

    I wish I had a magic phrase that would lift your spirits and encourage you.

    Just know that I'll be praying for your beautiful family.

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  7. Oh Pam, it is so hard for the siblings to see all the attention D demands. So normal for her to do this, but heart-breaking for you. Sounds like you handled it with grace . . . hats off to you!

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  8. This is heartbreaking. No one gets how much D affects a family. I hope she loves her glasses and it helps! ((hugs)) to you.

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  12. You have NOT failed her, not one bit! Diabetes is tough for everyone in the family & "diabetes issues" manifest themselves in each and every family member.
    My only suggestion is to spend some unscheduled one on one time with Little Sister, and continue to do what you do- Which is being a wonderfully caring & loving M-O-M-M-Y.

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