Blog · October 28, 2020

10 Things this EB Mom Wants You to Know…

It’s EB Awareness week! Every year from October 25 to 31st (the last week of October) is reserved to help raise awareness for Epidermolysis Bullosa, my son’s rare skin disorder.
Here’s 10 things this EB mom wants you to know…

1. Yes, it might looks like we have it all under control, and most likely it is. That doesn’t mean we wouldn’t like some help. Even if that just means a kind word. We appreciate those more than you know!

2. Taking Nicky anywhere is very hard. We are often invited to places or events that are hard to get to for him. We wish people would visit us more, is all. I understand this is hard with COVID, but this was true even beforehand and will be true after.

3. We find ways to be happy. It may not be what looks like happiness to many, but we’ve figured out what works for us. Love has a lot to do with it. It took me a long time – too long – to realize that happiness, or, rather, my expectations of happiness, was wrong. It was not going to come some day, after Nicky was cured, I accomplished some goal or acquire some “thing”. I wanted happiness to be available to me in each moment.

4. We can only live one day at a time. The future is a scary place. Who will take over Nicky’s daily care if something happens to me? I am so grateful his dad (my ex) is very involved nowadays and can care for Nicky fully. It eases my worries. But there are other fears. We’ve learned to ignore people’s hurtful comments, but EB is worrisome in itself. The fear of a nasty infections, skin cancer or other health concerns are always on my mind. The fear and joy are constantly competing for my heart. Joy is mostly winning nowadays because so many of my friends and family listen and care about us. Thank you!

5. It means the world to me when you ask about how we’re coping, how Nicky is doing, about EB, how you can help. I am sad to say that when close family/friends don’t bother asking me about Nicky at all, or, if they visit (rarely), don’t spend any time talking with him, I will think very differently about them from now on.

6. Please teach your children about people that are different. Educate them about bullying, and encourage them to befriend those who may be disabled or lonely. As our society grows even more diverse, it will become even more important for children to study together and learn to tolerate and respect their differences as they affirm their common humanity.

7. It’s too easy to judge people by appearances. You never know what the true story is. Yes, stares can be upsetting, and I would rather see a smile all told. But stares and questions give us the opportunity to educate. If you have a question about why I bandage Nicky the way I do, or why I do this or that, please ask. Knowledge is power and please remember that every EB child/patient is different.

8. EB children are more similar to other children than they aren’t. When I used to go talk to Nicky’s elementary school class on the first day of school, I used to make sure the other kids knew this. Yes, Nicky wore bandages, but he liked Barney and SpongeBob like everyone else and to please treat him no differently than the other children. I asked children and teachers alike to treat him with love, patience, and try to include him in all they did.  

9. I am harder on myself than anyone else could ever be, so please be kind when offering advice! I’ve been googling EB every single day for decades now and I’ve talked to more EB parents, doctors and nurses than anyone I know of. That doesn’t mean, of course, that I thought of everything under the sun. I have learned with the help of my son what works best for all of us and are very grateful for that!

10. There is only so much I can do for Nicky. I am not a superwoman who has a steady and unlimited supply of energy. I get tired physically and emotionally. I get sad. I get lonely. I get depressed. I want to be positive 24/7 for Nicky’s sake but there are times, ever if rare, that I have to sit down, take a moment and accept I can only do so much. I am no longer ashamed to accept defeat from time to time. The good thing is that this has become more and more rare as time went on. Nicky is older and we can talk about all kinds of things. We love that people think we’re inspirational, but we don’t feel it. We are humans living day by day. However, both of us are okay if people need inspiration to live their most positive and enriching lives despite their challenges.