Is that time of the year again… the time filled with Christmas songs and glittery trees. It’s a time to be hopeful, to enjoy, to be more open and loving. I asked my mom the other day if she put the Christmas tree up yet… she said the time for the Tree or the “Presepio” in her house is over. Boo. If I was in Italy I would put it up for her as I did when I was a kid. The “Presepio” (Nativity Scene) was one of my favorite things to put up, she had a set that was so unique I never found a similar one to buy for myself. It was composed of the usual culprits, the nativity scene itself, filled with the mages and their camels, but there were many trees, houses, villagers, grass and sky to put around it. It was all made of plasticRead More →

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 later. Seven months after that unthinkable loss I miscarried a baby girl at 8 weeks. Thirteen months after that I finally held Nicky. He was a bundle of warmth that felt like heaven. After that initial bliss we found out he had EB, and everything else was a blur. For the longest time I felt lower than low. I am not sure I felt ashamed per se, but I was definitely distressed about my story, I felt distraught, even tormented by the memories of holding my dead newborn and surely poking blisters on my precious new baby did not help myRead More →

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 smile, a kind word, anything. You will make their day. I will continue to research methods, oils, trails and anything else, as I must because Nicky needs me to be strong and persevere to give him strength. Often times I know I end up acting like his buffer for what lies ahead in his life, yet I know strength is the best gift I can give him. Hope is huge, it helps us moving forward, and if it’s wrong to hope, then so be it. I learned that negative opinions have more to do from the person giving them thanRead More →

Yet, here we are. And I still have some dwindling hope against all odds, because it’s hard to hope when your child pushes against a very strong current. My hopes and dreams I have for my child die a little more each day as I watch him struggle to just survive. I surprise myself at the kind of person I’ve become. I literally explode when people treat my son with any degree of disrespect because he does not deserve it. He’s the sweetest boy, ever. I may not know much, but I am an expert in my child’s needs, and you can bet on that. One of the nasty side effects of RDEB is that the scarring does not only appear on the outside of the body, but also in mucosal surfaces, such as the eyes, mouth, throat and esophagus. All you have to do is look at cultures thatRead More →

Having hope sometimes is a gigantic challenge. A challenge so unsourmantable that it leaves you in tears and gives you sleepless nights. You cry. You scream. You fall asleep in tears. But then you wake up, dust yourself off and move forward, one day at a time. One hour at a time. Focusing on the present becomes imperative. One of the reasons why I have a hard time being part of support groups in general is because there are often death notices that come through, and there is nothing that destroys me like when I hear of another child with my son’s condition dying. Two deaths the past couple of days have affected me deeply. Both guys had the same diagnosis as my son. Jonathan Pitre (17) died of an infection, and my dear sweet friend James Dunn (23) died of cancer. I started talking to James after Nicky hadRead More →

Sometimes, when I sit down and think about it, I forget that the kind of stuff we deal with on a daily basis isn’t normal for most people. I forget, because after 20 years, they are normal for us, and even though I have a healthy child to remind me of the opposite, I choose to just live my day without comparing. Do not let anyone tell you that is foolish to have hope. It’s what keeps me going. Hope is that little bitty light at the end of the tunnel that keeps you moving forward.  I will keep fighting for decent health-care, for women’s rights, for decency, for LOVE and reject hate at every cost. My secret weapon is Faith, Hope & Love. Nicky hates EB. Hates it. At times he’s absolutely livid with anger over his condition. It’s not often, mind, but it does happen. Nicky didn’t comeRead More →

Society as a whole is filled with nice people. I met a ton of these kind people, whose heart is filled with kindness and generosity. But I don’t live in a bubble. I know some people are cruel. I know there is hate in this world. I know there is racism, bigotry, prejudice, misogyny, homophobia and discrimination. And while I encountered this cruelty in my life before my children were born-and stillborn, I just didn’t know how real it was until I became a special-needs mom. I am a little weary taking Nicky anywhere with me-a simple trip to Target can be filled with long stares, ugly looks and whispers. It’s unconscionable, but that’s how it is. This is why I am so very thankful for the people that are kind to us, we really need it. No, special need parents didn’t ask for this. Neither did we. Like most inRead More →

Don’t know what to say? Google “what to say to a special needs mom” or “what to say to a bereaved mom” and you will be inundated with amazing, perfect sentences you can add to your repertoire and make you look as the most amazing, empathetic person on the planet. Try it, seriously. You no longer need to abandon your friends and families when they need you, just Google what to say. You will be their hero forever. Nicky’s form of EB was one of the rarest, and as much as I admired and trusted his Doctors, I also knew that I – and Nicky once he was old enough to understand – had the final say in everything.  If I can leave you with any message today, just know that Empathy Matters. It really does.  It’s called empathy. It’s called listening, TRULY listening without feeling the need to compareRead More →

Nicky’s inner strength is something I deeply admire. There are times that he still surprises me with his wit, the way he thinks and the way he handles things. He’s such a loving, deeply interesting boy for those that care enough and are lucky enough to get to know him. He suffers greatly as well though, and that fact can never be ignored. I took the following pictures this past month to give everyone a small glimpse of what his skin looks like under the bandages. He’s part of the SD -101 cream trial (http://ebstudy.com/) so if you think his wounds look better, it’s because they do. This is his right arm. It’s looking fantastic. I know, I know, it still looks painful, but considering how it looked like before, say a year ago, there is a big difference. This is his lower back. This area is harder to wrap becauseRead More →