Recently, I had the privilege of interviewing Jen Menard, mother to this year’s Ilan-a-thon honoree, 3-year old Livi Menard. As a mother of two, and godmother to a 19-month old nephew with PBD, Jen’s thoughtful answers meant a great deal. I’m inspired by her honesty, and her gentle way of “spreading the Livi love around.”
How did Livi become this year’s honoree?
Mousumi Bose, Ilan’s mom, asked if Livi would like to be the honoree while we were attending the GFPD Family & Scientific conference in Nebraska last year.
What does the honor mean to your family?
I think having Livi and other PBD kids at the race helps participants see what their contribution means. It’s also so rewarding to see everyone come out to the race and show their support.
Livi is 3-years old. What have you learned about PBD along the way?
The most helpful piece of information I have learned through our journey is PBD kids do not fit a mold. We’ve tried hard to ignore timelines and prognoses.
How did/do you manage the weight of her diagnosis?
When we were told Livi was a Zellweger baby, we basically prepared for her death… and then we waited. Some days I still feel like I’m waiting. Not to say that our family hasn’t lived our days with Livi to the fullest, because we have, but her diagnosis is always a shadow hanging over us. Any strange movement could be the beginning of her first seizure. Or her sneezing this morning could turn into pneumonia that will ultimately take her from us. It’s an exhausting way to live, but we try our best to keep things as normal as possible.
How did you explain Livi’s diagnosis to her older sister Lila?
We’ve been pretty honest with her. It’s been gradual, since Lila was only three and a half when Livi was born. She’s always known Livi was sick. That was blatantly obvious since Lila’s best friend has a little sister who is Livi’s age. Lila noticed the differences (blindness was a big one, plus the constant doctor visits). So when Lila asked about these things, we explained that Livi might not grow up. For a long time, she thought that meant Livi would be a baby forever.
Then one day, completely out of the blue, Lila (who is now six-years old) asked if Livi was going to die. I think along with listening to Chad and I talk, she worked it out in her head. Lila knows that we can’t predict the future, but Livi’s illness makes it likely that her life will be shorter than ours. It’s a hard concept, and sometimes she asks crazy questions, but we try really hard to listen and answer all of them. And I don’t hide my feelings. I almost always cry when we talk about it, but the reality is sad, and I want her to know that’s okay.
Is the idea of creating normalcy what led to sending Livi to preschool?
Yes. She goes to school three mornings a week and really seems to enjoy it. Her classmates and teachers love her. She receives 5 different therapies while at school, but she also gets to participate in fun activities like circle time, music and crafts. She is also consistently using the “more” sign, which is awesome!
Her time at school has definitely been a transition for me, but it feels good to be spreading the Livi love around, and also creating awareness about the disorder.
How did you find a school that was right for Livi?
We are lucky because our county offers a preschool program to bridge the gap between the end of early intervention and the start of kindergarten. Our local school doesn’t have a preschool, and even though it would be convenient for Livi to be at the same school as Lila, this worked in our favor. The end result was that we were able to pick a school for Livi. Our counselor and Livi’s developmental therapist both knew one particular teacher and couldn’t say enough wonderful things about her. Her teacher is really great and it all worked out so well.
What’s her classroom like?
There are 8 other kids in her class between the ages of three and five. Along with her lead teacher, there are two aids. Most of the other kids are higher functioning, but they are so good about including Livi. While at school, Livi has PT and OT, plus vision, hearing, and speech therapy. They try not to have these therapies during circle time because she really enjoys it.
Many thanks to Jen Menard for sharing! If you’d like us to highlight your family’s PBD story, email Heidi Harris, Communications Coordinator at heidi@gfpd.org. For more information about the June 8 Ilan-a-thon, a 5K fun run benefiting children with PBD, visit here.