Being the parent of a child with Epidermolysis Bullosa or any illness/condition is a perilous journey. The rarity of the condition makes it so we have to take any advice we receive from Doctors, Nurses and even other EB parents with a grain of salt. There are many forms of EB and each form has many subforms, so what works for one patient may not work for another. We are all dealing with something foreign and devastating in our own way. Often times the biggest cause of frustration is people that mean well, but say the wrong things, making us feel worse altogether. Here are my top 5 things you should never say to any parent with a Special Need Child: Give any sort of unsolicited advice, most especially avoid say the words “you should” or “you shouldn’t”. Seriously, NO!!! I beg you, please. Only give advice if it’s specificallyRead More →

Planning a year from now, a month from now or a week from now isn’t always an option. I make and break plans constantly because my child’s health can turn on a dime. We spend our days changing bandages, fiddling with medications, with needle pokes, blood draws & infusions and we measure milestones with wound healing and high red cell counts. One would think that after 20 years and 2 bankruptcies I would be used to this hellhole of a place where Insurance companies dictate the life and death of people, but, sorry, it still makes me mad. Quiet people live internally a lot. They write their feelings out. They also learn to listen, which is a wonderful quality. Look, I was not happy with the election results, but I care about my health too much to spend my time badmouthing, name calling or insulting others who don’t think theyRead More →

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 age now where he should be living on his own or would soon, perhaps graduating from college, but he is everything but independent and will probably never be. EB takes a toll on everything and everyone. Just recently between a persistent corneal abrasion that lasted weeks and severe stomach cramps which made his existence a miserable day to day ordeal, I was nearly suicidal, and I am not even overstating it. I guess people might think EB goes away or gets better. It doesn’t. It gets worse. I think at this point I got Nicky pretty much “stable”, his wounds areRead More →

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 →

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, myRead 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 →