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! Nicky may be 21, but he’s still MY kid. Speaking up for my son, especially  if something doesn’t sit or seem right is now a way of life. No one knows their child like his parents. Even so, parents are often treated by doctors in general in a dismissive and condescending way. It’s up to us to make sure they understand that it’s our job to tirelessly fight for our children’s health. It’s up to us to make sure that those who work FOR us acknowledge the validity and credibility of our point of view. But, it didn’t start thatRead 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 →

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 all you have been through, I’m speechless and all I can say is to never EVER give up. Most mothers if they were to go through what you have gone through, they would have a breakdown every week if not everyday. So thank you for being strong. Thank you for being tough. And thank you for always being MY loving mother <3” In response, I am writing this blog to let both my sons know how I feel about them. Always feel like you’re a joyful priority, you are my world, the reason I get up in the morning, my loves,Read 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 →

From my book “Butterfly Child“: “For a long time I told myself that things would get easier. It was going to be easier once he sat up, or when he was out of diapers, or when he turned 10, but I had been duped. The wounds were bigger, nastier, took longer to heal; the limbs were longer, we needed more bandages, longer wound care, hands worse, more homework, and things were only going to get tougher.” I wrote this sentence in my book to illustrate how, as time went on and Nicky got older, some things got easier, while others got tougher. At 20, Nicky can tell me what hurts, where it hurts, how to make it better, when to change his bandages and is practically in charge of his well being, to which I oblige, but his inability to walk anymore or even move at times and my inability ofRead More →

I remember clearly this girl on the right. I was painfully shy. Painfully. So painfully so that in third grade, when asked a question about geography, I didn’t speak because I was afraid to be wrong. I wasn’t wrong, I had studied all day before, but when I was asked this question in front of the class, I froze. My shyness got me an F. I was mostly a quiet child not only because of my shyness, but also because I was taught by various teachers and other people in my life to be quiet. To be less sensitive. How many times my elementary teacher made fun of me for crying? I lost count. I was 11 years old in this picture, taken in the summer of 1975 in my parent’s living room. I had just finished 6th grade. Back then my shyness was at its peak. Most people would sayRead More →

There is a unique kind of grieving that special need parents live with every single day. Yes, we like to live our lives as normal as possible, but then, SLAM, something happens that reminds us how fragile our children’s lives really are. True enough, my Nicky is beating the odds, he’s very much alive and ready to fight and I am ever so grateful he is, especially since I have so many friends who have experienced the loss of their children, and since I have buried a child myself, I know exactly how that feels. I want to delay that horrible fate as much as possible, while continuing to hope for some kind of treatment to come along. That does not change the fact that my hopes and dreams I have for my child die a little more each day as I watch him struggle to just survive. When Nicky was fiveRead More →

Last night, during a bandage change, I barely touched Nicky’s feet and he yelled in pain. I wasn’t touching a wound, mind you, I was simply “gently” feeling his skin. His feet nowadays are mostly healed, and they have been healed for sometime, they really look beautiful all in all, so I was a little perturbed. In truth, for the past several months – or years – Nicky won’t let me touch his feet at all. If there is a wound or a scab to clean or anything else he insists on cleaning it himself. I don’t mind at all, yes, please do it, ha ha. I asked him what is the matter with his feet though, and he told me they are “incredibly” sensitive. Just touching them is painful. Often he gets a blister just transferring when he puts some weight on it. Another area on his body isRead More →