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.
I was worried about Nicky yesterday and I told him so. It seems as if lately he sleeps as much as 18 hours a day! He doesn’t do that every day (his normal is about 12), but he has done this at least 3 times this week-and he told me...
Something happened when I tried to share my latest post from this website on Facebook on July 10th… Hmmm… really? People on Facebook have reported this website as abusive? When I further tried to copy and paste a link to my blog on Facebook I got this message: I requested...
I want to share our journey with all of you because it’s been a long road. If we can help at least one person going through something like this, then it is worth it to me to be open about our feelings and struggles. I can’t believe it took 6...
This year, so far, has been horrible. I try to do fun things and distract myself as much as I can, but the undeniable truth is there, always there. Nicky is in pain. Always. At this point we’re waiting for a sleuth of appointments with various specialists (GI, Dermatologist, hydrotherapy...
Ever since Nicky has started having trouble with the g-tube we had to change our whole routine. While some are small things, the biggest change has been how much weaker he’s become, so, instead of him coming to the couch to change bandages, I go to him. He spends his...
I often post updates on the Facebook Page for my son (https://www.facebook.com/NickyLivingWithEB/) about his struggles and our fights, but the fight over his g-tube lately was one for the books. I have learned over the years that I get more bees with honey, but sometimes insurance companies and the rest...
I remember vividly being pregnant with my first baby, Alex. Finally my dream of becoming a mom was coming true. I waited an elated 9 months for his arrival, and on the day after he was due we found out he had died in utero. He was stillborn 2 days...
My son and I had two incredibly hectic days this week. We drove to Stanford one day for 6 hours, and the next day we were in the hospital all day where Nicky had surgery until 5pm, and then we took a 7 hour drive home-longer because of traffic. That...
WHAT IS EPIDERMOLYSIS BULLOSA? Epidermolysis Bullosa is an umbrella term for inherited, genetic skin blistering conditions that vary greatly from mild to lethal. The three main forms are categorized under “simplex”, “junctional” and “dystrophic”. In recent years they also added a “kindler” form and an “autoimmune” form to the list....
“I no longer feel the need or want to keep living 😞😞 I don’t feel strong anymore…” That sentence, if ever uttered by Nicky, is my greatest fear. He has never said that, but he’s come close to it enough times to throw me in despair. It’s the type of...
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...
It’s that time of year where depression sets in. The time where “vacations” are over and it’s back to the old grind. Of course, the fact that Nicky is having the corneal abrasion from HELL doesn’t help at all. It’s the constant battles, every time you turn around, that exhaust...
