{Meet a D-Mom} Penny of A Sweet Grace

by Leighann on June 6, 2011

D-Mom Blog Featured D-Mom

If you have seen photos of Grace, you will agree that she has such a great smile! Grace recently visited with her d-camp BFF and it makes me want my own daughter to have a diabetes BFF, too.

I invite you to read about Penny, and then visit her blog A Sweet Grace.

I’d like to introduce you to Penny of A Sweet Grace.

Tell me something about your child.

Grace loves to swim. She would swim all day, every day if she could. And she swims like a fish, ever since age 4. She should have a tail.

A Sweet Grace

What is your child’s favorite 15 gram carb (or less) snack

Grace’s favorite snack is usually a fruit salad that we measure out to be about 15 grams. If that’s not available, she loves carrot sticks dipped in peanut butter. Then it’s onto 100-calorie packs of various varieties.

How do you manage diabetes?

Grace has been pumping with the OmniPod insulin pump since April 2010. She uses the PDM of the OmniPod as her meter. Her favorite ‘pricker’ is the Delica lancing device. She counts carbs. No CGM here, Grace refuses and it’s not a fight I am willing to have right now. I think she will wear a CGM when she gets older.

What do you know now that you wish you had known at diagnosis

I wish I had known about the wonderful support network that is the DOC (Diabetic Online Community). I felt so alone at her diagnosis in January 2009. I thought I was the only one with a six year old child who had Type 1. I soon realized that was not the case and jumped online a few weeks after diagnosis, easing myself into the DOC.

I wish someone, anyone, had been there to tell me it would all be OK. That there would be a new ‘normal’ in our lives, but that it would be alright.

What has been the biggest challenge?

The biggest challenge has been Grace growing and all the hormones that go along with it, resulting in shooting highs at night and prolonged bouts of highs over the course of weeks. The pump and mastering it has been its own challenge and the learning curve is steep for learning a pump, but honestly, the growth spurts have been our biggest nemesis throughout these past two years. I continue to learn how to handle them through increasing basal rates.

How do you and your husband maintain your relationship?

My hubby and I met when we were in 7th grade. That’s a long time ago. We know each other very well. We talk about everything honestly, we share in parenting all our kids and we share in the responsibility in managing Grace’s diabetes with Grace. Date nights do not happen, but we manage.

What have been your challenges sending your child to school? Triumphs?

Grace’s school has been nothing short of wonderful. Her school nurse is marvelous. Shout out to Mrs. Breslin! She has been onboard since Grace’s diagnosis in 1st grade and has learned all about shots, then when Grace went on the pump, came to pump training class with us to learn all about it. The school has created a wonderful 504 plan for Grace and they really do abide by it. I trust them with Grace’s care and know she is in great hands during the day. I am blessed to have such caring, knowledgeable people in her life at school.

What sports/activities does your child do and how does it work with diabetes?

Grace swims. Oh boy does she swim! We lower her basal by 30-40% during the time that she swims and then prolong that lowering for another 1-2 hours after she gets out of the pool. She also eats something before swimming so she goes into the pool being at least 150.

What vacations have you taken and how did you deal with diabetes?

Can you believe we did DisneyWorld 2 months after Grace was diagnosed? We had planned (and paid for) the trip for over a year, there was no way we were NOT going. We fretted about it – mostly about keeping her insulin chilled in Florida in March and the airplane security. We did it though and consider it one of the biggest accomplishments to date. We had a fantastic time and it let us know that we could do anything – if we could go to Disney with diabetes just after being diagnosed, there was nothing that could stop us from doing anything else she wanted to do. It was a marvelous trip that made a lot of memories.

Have you found a babysitter, and if so, how?

We have no babysitter! Grace is OK staying with her older sister for an hour or so, but no, no babysitter. It’s us, all the time baby.

How has diabetes affected your other children?

My oldest has autism and my middle child is a typical pre-teen. We have been through a lot with autism. We learned to roll with everything. We learned to enjoy every minute. And that helped us in dealing with diabetes in the family too. It was just another thing on the plate. I can honestly say that we accepted it pretty quickly and presented it to the kids as ‘it is what it is.’ We have already been through so much with autism, frankly, if you want my honest opinion, diabetes was not that devastating to us. That’s hard to write, but that’s the way it feels to me.

How do you find time for yourself?

I get out with my girlfriends. I take my kids 1:1 places with me. My husband takes the kids out solo so they have a chance to have a parent all to themselves. I quilt at night, I read, I blog. There is enough time for me.

What have you done to help your child become independent in their own care?

I really have found that if I let Grace take the lead, she wants to be independent, on her terms, when she is ready. That’s my best advice for a parent who has a headstrong child. Grace lets me know when she can do it herself and she does. She counts her carbs herself, adds them up, doses herself can do a complete site change on her own and can figure out things like temp basal rates. She is quite competent for her age. Whatever she has shown me she can do, I let her do.

What research organizations do you support and why?

I support JDRF and DRI. I like the research ends on both organizations.

How do you deal with tough diabetes-related questions from your child?

I am an honest and forthright woman. Some like that about me and some don’t. Oh well, I call it like I see it. I give her the honest answer, about everything, including diabetes. But I do it on her level and I give her what she asked for – the answer or where we can find it. The tough questions – about complications later in life, about care for herself, I answer on her level. I also encourage her to speak with other PWDs in her life and ask them.

How has diabetes affected you financially? Have you been successful in getting the insurance coverage you need?

Oh the long story or the short story? The short one? OK. Diagnosed, rejected from insurance company because of pre-existing condition, placed on our state’s CHIP program until Dec 1, 2010 when they moved her to Medicaid because, in their words ‘she is too expensive for CHIP.’ Exhausting and frustrating to say the least. Medicaid has refused her Novolog as ‘not medically necessary’ and fought about the number of test strips she should have. Nothing short of a nightmare. I have fought them at every turn and happy to report the score is currently Penny – 2, Medicaid – 0.

Anything else you’d like to say?

The DOC is what has saved me from a life of loneliness and diabetes and it has done so much more than that for Grace. I am thankful every day that I found a place that understands, supports, accepts and encourages us to do this every day. I am blessed beyond belief.

Further Reading

Novolog is not ‘medically necessary’ or the letter that made my head almost come off my body

We won! A round of Novolog for the house please!

asweetgrace

Meet other D-Moms and D-Dads on Mondays.

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{ 3 comments… read them below or add one }

1 Reyna June 6, 2011 at 1:38 pm

Grace is a true buddy through the highs and lows of “D”. She even called me … hunted me down through the google machine…and called me with that huge brain lesion scare that we had with Joe. That says something about a person. She cares. She is real. She is same-same. LOVE GRACE!!!

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2 Jules June 8, 2011 at 3:30 pm

Yay Penny and yay Grace!

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3 Holly Jones June 8, 2011 at 10:03 pm

Thanks, Penny, for an honest interview! : ) Grace is amazing-doing site changes alone, and temp basals? She rocks!
Congrats on being featured! : ) Holly

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