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 months for our life to get back to normal, which explains why my blog became silent. It’s not that I had nothing to say, au contraire! When you spend oodles of times and endless nights in the hospital, you become this zombie that is hard to describe. I did start a diary again and that’s what kept me sane. It all started late last fall. Nicky likes to tell the story that it started back in 2017 when I accidentally ripped his tube out, balloon and all, while helping him go to the bathroom, but the truth is that heRead More →

What I am watching Three years ago, as season 6 was about to start, I got tired of hearing about Game Of Thrones everywhere, so I decided to binge on seasons 1-5. I first started watching 1 per day, then eventually were 2, 3, by the time I finished binging on season 5, season 6 was about to end, so I watched the whole last season in 2 days! I became as obsessed as the rest of the country. There is a reason why everybody talks about this show; the production, the fantasy, the storylines that converge at critical times, the level of unexpected twists, the darkness, the gore and the excitement. It’s everything rolled into one. Five stars! It all started with a conversation with my son’s RN. She was so excited about the upcoming season of “Call the Midwife“. I love this lady, she’s bent over backwards forRead More →

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 etc) and hopefully as soon as possible, a surgery for a new ‘hole’, as the old g-tube hole is absolutely 1 million percent hopeless. It bleeds, and it doesn’t want to heal or close on its own. This has been going on since early January, so seeing Nicky dealing with this for 4 months, 2 hospitalizations and 2 surgeries later, I honestly feel as I want to just disappear. I am so tired. I want to hide myself in a little corner and cry. But, I cannot. I need to be strong for Nicky, and when he’s with his dadRead More →

July 1999 – It may be hard to see or even comprehend for most, but this is Nicky, 2.5 years old, using a needle to pop his own blood blister on his wrist. I am still on the fence about giving my healthy son a knife to cut his meat, but Nicky has always been incredibly conscientious about using needles or scissors to pop his own blisters. I welcomed it and even liked it because he felt more comfortable doing it himself than having me do it, even as young as 2. Crazy? Not really, not for Nicky. He’s always displayed a maturity in certain things way beyond his age. He’s a little kid for other things too and it’s a nice give and take. Nicky ROCKS! More of Nicky’s life in the book –> http://www.butterflychildamothersjourney.com/ Post Views: 579Read More →

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 day at the computer chair, so I grab the bandages and I sit next to him while I change the arm, leg, or whatever. He’s weak because he’s lost so much weight, but also because moving is painful. He’s been moving less and less over the years. When you don’t want to move much, it affects your joints and your muscles. The fact that his feet are mega-sensitive and he can’t really walk on them doesn’t help any. When he does walk he walks (with the help of his walker) on his tippy-toes, which are extremely well padded. An “outRead More →

What does having a “rare” member of the family means for our whole family? Rare means being scared. Nicky is 22 years old and I still check if he’s still breathing each and every morning. That magnitude of worry is overwhelming at times. I live his condition even though I do not have it. Our whole family does. Rare means that we have a lot of expenditures that the average family will never have. There will also be things, sometimes expensive things, that we purchase to try because we have hope in our hearts that something might make a difference. When it’s rare, nobody can say for sure what works and what doesn’t, and every patient is different. Rare means driving or flying far and wide to see Doctors that are at least familiar with the condition or meet other families. It’s disheartening when local Doctors, of any kind, refuseRead More →

What I am watching Let’s face it. There aren’t many historical shows that take place in my beloved Italy, so when I heard about the “MEDICI” on Netflix, I was all over it. Season 1 had the further intrigue of starring Dustin Hoffman and Richard Madden. Season 2 jumps a couple of generations. While season 1 told the story of Cosimo de Medici (Madden), season 2 revolves around his grandson, the famous Lorenzo il Magnifico, played handsomely by Daniel Sharman. I truly enjoyed the show, and to learn history this way has always been my favorite mode. I’ve often said that the way they teach history in school is the most boring way ever, and now what happened in the Duomo in the season finale, will forever be etched in my soul. It was filmed in the same place where it happened 500 years ago. How cool is that? FiveRead More →