Larisa Martiniak, mother of two, hosted her first One Small Step walk this fall in Berkeley, California. We asked her to share a bit of her perspective on what it’s like to find out her child has PWS, and how it has empowered her to take action in the day to day.
Tell us a bit about your daughter and how you found out about PWS.
Next week my daughter turns four. She is loving, empathetic, fierce and funny. She also happens to have Prader-Willi Syndrome. When she was five and a half months old, just a few days before my first official Mother’s Day, I got the call that informed us we are now part of the Prader-Willi family.
Prader - what? Oh, how many times I have heard that question!
Since her arrival, I feel like I have lived 4 lifetimes without all the globetrotting
What is one life lesson you have learned as a parent of a child with PWS?
There are many amazing mothers and fathers who have come before me and written beautiful pieces about how much they have learned from their children and how hopeful they are for their future. And they are so right! We may hav
e our lows, but we have plenty of highs too.
One life lesson I’ve learned on this crazy ride is strength. Strength is not optional in this new normal. It’s not something that we can pick up and put down easily.
Strength comes in many forms.
Strength is accepting help.
Strength is applying every speech therapy technique month after month because I’m dying to know what she has to say.
Strength is texting your friend and asking to meet for coffee. Not necessarily to discuss your kid or her latest therapy visit but to just be.
Strength is calling the insurance company again and politely saying "please" and "thank you" even though all you want to do is scream at them.
Strength is telling your partner, I’m done for the night, you need to give the shot and do bedtime tonight.
Strength is hugging your kid a lot longer than you had planned because she just did something “impossible” in physical therapy.
Strength is saying for the umpteenth time to a family member or friend, "No, she can’t just have one cookie with the other kids."
Strength is making the hard choices that are right for your child, your family, your mental health.
Strength is not optional, it’s our everyday. Just like it’s our kids’ everyday.
What is something you would tell a new parent, hearing about PWS for the first time?
The next time you feel depleted, the next time you want to push pause on life, the next time you miss seeing your friends because you just don’t trust that babysitter yet, know that it will get better.
Another PWS mom wisely told me last week that it is rollercoaster. Things can be at their worst and then suddenly start to improve and just as they improved they can decline. I was in the middle of experiencing our first regression.
So, what do you do with that? You remember your strength. I remind myself that strength is not optional and I need to get up and move on to the next task. This has been my approach to this new normal. It may not be yours and that’s ok; strength comes in many forms.