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 more complicated. He’s less mobile, he has more issues, more doctors, etcetera. RDEB is a degenerative condition and the issues we may face are most likely different than what another family may encounter, but we all have similar wishes as far as how we’d like to be treated and what we’d like everyone to know about our journey. These are the most important ones to me: 1. I am not ignoring you. I try to respond to questions or chats promptly, but sometimes it’s simply impossible. When Nicky calls me I run to help him. He knows not to call forRead More →

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 me. I had someone ask me why Nicky “wakes up” with corneal abrasions since we sleep with our eyes closed. I know this is a valid question so I wanted to share my answer. First, we need to remember that his EB (RDEB-HS) effects his eyes too. There are different ways this happens. If he sleeps with his eyes slightly open, they will dry up and a slight touch with his hand or brisk movement will cause the abrasion. He could also scratch his eye while he sleeps. Sometimes he scratches his eye while he’s asleep and hurts the skinRead More →

My son Nicky was diagnosed with Epidermolysis Bullosa (EB) 12 hours after his birth, a month later we received the official diagnosis of “Recessive Dystrophic”. Here are my top 6 things to know about Epidermolysis Bullosa. 1. Epidermolysis Bullosa is a genetic skin disorder. Epidermolysis Bullosa it’s an umbrella term for a group of genetic skin blistering disorders. The condition arises from genetic mutations present at birth, which can be inherited either recessively or dominantly. Different mutations cause the different forms of EB, as the body does not produce or produce very little of certain proteins that cause the fragility of the skin. In rare cases EB can also be an autoimmune disease in which the body produces antibodies to the structural components of the skin. 2. There are a variety of types of Epidermolysis Bullosa. Epidermolysis Bullosa manifests itself in a variety of ways. The three primary types of EBRead More →

“I have never had a day with no pain and it is almost torture to watch people do things that I know I can’t.” ~Sohana Collins (https://www.cure-eb.org/) This sweet and heartbreaking quote from a girl with EB touched me more than words can say. After I retweeted it, I asked Nicky if that’s how he felt too, assuming he would say something along the lines of “obviously”, but he said “No”. “No? What?” I was a little shocked to be honest. For some whatever reason I was always under the impression that Nicky was in pain 24/7. I always felt it was torture for him to just sit there while others did things, including his brother. I also never ate in front of him because I knew he loved food and not being able to eat it… you know… I try not to do it unless there is no choiceRead More →

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 make it, Nicky will make it… he will live to see a treatment that will improve his life drastically. It may be false hope, but the truth is, my heart needs it.  Let’s be honest, there’s no handbook for raising a child with an incurable illness. We just have to muddle through, day by day, hour by hour. These are just a few of the major worries that cripple my spirit at times… 1. What if I get hurt and cannot take care of my child? What if he outlives me?  It could happen at any time. Yes, I tryRead More →

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 child needs. Friends and family disappear, but those who choose to stay become part of our new world, and they are the most amazing, caring people we will ever know. We have realized that almost everyone has a tip, advice, or even chiche’ to share, and this never stops. Eventually we have learned how to smile, laugh (or cry) inside, or politely say “thank you”. We have learned that negativity feeds on itself and we can better take care of our child if we start thinking positive every chance we get and enjoy each day as it comes. In orderRead 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 →