A Mother's Journey
My heartfelt book, Losing Alex, which I wrote after the loss of my first baby, Alex, who was stillborn at full term, is now officially an AudioBook and I couldn't be more proud and humbled by the amazing voice of Marsha Waterbury, for lending her talents for my story.
New episode of Butterfly Talk ready to view! If you want to be able to help a friend or family member that has a child with special needs, I hope my super-important tips can help you! Butterfly Talk is a YouTube show where I talk mom to mom about different...
My son has made me a better person. No lie, I used to be the girl who slammed doors and threw things. It’s quite embarrassing to think about that now, but having a child with special needs has taught me to have an immense amount of patience. Nicky has taught...
New episode of Butterfly Talk ready to view! Today I am sharing what are my favorite “Special Needs Parenting” Movies, plus I share which movies are available to watch specifically about EB. Butterfly Talk is a YouTube show where I talk mom to mom about different aspects of coping and...
I was thinking this morning about my conversation with Nicky that I had a few years ago while we were changing bandages… I told him how hard it was to wrap his wrist and that if only he could try to straighten it once a day it would not be...
Being the parent of a child with Epidermolysis Bullosa or any illness/condition is a perilous journey. The rarity of the condition makes it so we have to take any advice we receive from Doctors, Nurses and even other EB parents with a grain of salt. There are many forms of...
Planning a year from now, a month from now or a week from now isn’t always an option. I make and break plans constantly because my child’s health can turn on a dime. We spend our days changing bandages, fiddling with medications, with needle pokes, blood draws & infusions and...
I am a nurse every single day for my son and I don’t enjoy it one tiny little bit. There are days where EB just overwhelms me. Still. One would think that after nearly 22 years it would just get easier, but it’s just draining and relentless. Nicky’s at that...
As the mother of a child with a complex medical condition, I feel that there are some things everyone should know about what it’s like to parent this child, whether he or she is 1 or 21. In my case, of course, as Nicky is getting older, things are getting...
A recent visit to the ER for my son Nicky powerfully reminded me how much power we have, as parents of children with rare diseases, to control the situation. To control how we are treated. To make sure we are listened to. We are, after all, the experts on our kids!...
If there was one thing I’d want everyone to know it’s to please be aware that parents of special kids, especially those with lethal conditions, are hurting. Badly. So, when you see a parent pushing a child in a wheelchair at the grocery store or at Target, send them a...
Just a couple of days ago, on Mother’s Day, I received the sweetest card from my son Connor, who is 14 years old. He made me cry. He thanked me for taking such good care of Nicky and for teaching him strength. This is just part of his card: “Through...
Worry seems to be a mantra for EB moms. We worry. Our heart sinks with every new passing. Myself, I try to cherish every day and not think about the future, it is unknown after all. Thinking positive is hard, but I do try. I keep telling myself: Nicky will...
We hurt to depths that boggle the mind, but we know joy that others will never understand. At the beginning of our journey, we may not think we can do this, we may think we’re not good enough, not patient enough, not selfless enough, but we become the parent our...
