A special blog contribution from Sheri Mills. Sheri shared her story via our Stories of Hope Questionnaire.
How has your child exceeded your expectations?
We have watched Lyra work so hard for everything — even things that come naturally to most babies and children. I remember showing her how to hold a rattle with our occupational therapist.
But her drive and determination has been there since day one. She has fought and fought until she gets something. I never thought I'd see her get so strong, so smart, and so empathetic. She has met all her goals, with the exception of speech, and is now at the level of her peers.
Think of a time you surprised yourself in your ability to do the impossible.
Ha! This question makes me chuckle because everything seems impossible at first. We make it through the NICU, we make it through those first few months home, endless doctor appointments that lead to other specialists.
Then transitioning into preschool and individualized education plans (IEPs). Fighting insurance and for state programs. Isn't it all impossible at first? And yet we fight, and fight. All of it is a surprise to me. I never knew I'd be so strong and become such an advocate.
What are you thankful for?
[Gasp!] I cannot even imagine this yet. With Lyra at age 4, I want a treatment for so many things before they hit us. But I just want Lyra to live her best life. One without so many challenges where everything is so hard for her, and us. I want her to live long, too. We need treatments for longevity as well as the day-to-day. Their lives matter.
What does this quote mean to you?:“Until you have a kid with special needs, you have no idea of the depth of your strength, tenacity and resourcefulness.”
Ain't that the truth! I've lived it, and just feel it in the depth of my being.
What does this quote mean to you?: “Most people see what is, and never see what can be.”
Well, when you have a child with special needs and a rare disease, we have to look at the future. You need to constantly be looking ahead. But negativity has no place in the day-to-day. We could easily wallow. It does no one any good. We have to be positive for our kids and see what can be.
What gives you hope for the future?
The fact that so many are fighting and there are so many things in the pipeline.
What positive life lessons have you learned from having a child with PWS?
The small stuff just doesn't matter. You want to go to school in a crazy outfit — so be it. We have big fights to fight. I don't sweat the small stuff anymore.
What would you say to inspire a parent whose child has recently been diagnosed with PWS?
Love your child! You still had a baby, and you deserve all the congratulations. Live one day at a time. One hour, one moment, sometimes one breath at a time. Time does heal us.
Who has helped you in your PWS journey?
What a community we have! I never asked to join this club.— the rare disease club. But, if we have to be in one, I have to say the support in our community is like no other. We may be small, but we are fierce!