Blog · August 21, 2018

The Constant Battles Exhaust Me

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 skin inside his eyelid. So, while this is not technically an abrasion, it still hurts like hell and the skin of the eyelid swells up. One time he had an eyelash in his eye that caused the abrasion.

I am not sure what is happening this time around. Normally these types of issues resolve themselves within a few days, 3 or 4 at most, but this time we’re going on 10. This worries me because we had an instance when Nicky was 3 years old when he woke up on the 4th day and his eye was swollen up so bad it looked like he had a red golf ball there instead of an eye. I took him to the ER immediately and when they took a swab of his eye they told me he had an extremely dangerous infection which could have caused blindness. Oral antibiotics were prescribed and it took a good week for Nicky to get better.

This time around his eye is just barely swollen, but I was just beside myself. At 21, Nicky is at the age where I can’t just arbitrarily take him anywhere, I want him to have a say on his health, so he agreed to go to Urgent Care if he woke up monday morning still the same. He was, so I took him. The Doctor prescribed antibiotics and as I write this Nicky is still sleeping and I am hoping the antibiotics are doing their job because, if they do not, things can escalate quickly and I don’t want that for Nicky.

When Nicky gets corneal abrasions or wounds on the inside of the eyelids any light is painful. This means we live in the darkness. Every window is closed and everything is dimmed. This is particularly challenging when we have to change bandages. I cannot take care of him the way I like to because I cannot see everything I want to see. So, not only Nicky is in pain, this type of issue hurts his health all around. I hate it, hate it, hate it, hate it.

So, I write. To battle my depression and attempt to try to keep my head above water, I write because I want people to know how horrible EB is.  Special Need moms feel alone, and when you’re dealing with something as rare and as horrible as EB, not only we need awareness, but other moms need to know they are not alone. Raising my Nicky I can honestly tell you I’ve felt every emotion you could ever imagine. I’ve felt lonely and loved, resentful and blessed, tired and full of adrenaline. I’ve felt abandoned by God and guided by God. I’ve felt lost and found myself. I hated life for being so darn hard and I loved life for bringing me this AMAZING gift.

I am a writer. I consider my contribution to society to be an important one. I write for myself, I write to spread awareness, and I write to help people. “Write what you know! Write what you know!” What I know is EB and how it affects my son, what I know are many strong moms and there’s a lot of fierce moms out there dealing with much more than I am. We all need encouragement, a hug, a night out, understanding and maybe a little pat on the back.  If you live with Epidermolysis Bullosa, you have to be strong. And if you’re not yet, you will become it. You have no choice.

I also know that we become so consumed with our children’s needs that we forget our own. I put on a dress the other day and I saw how many tiny bruises I have all over my legs. What the heck? How did I not notice them? I didn’t notice them because my days are full of pain, full of tears, (and I wear leggings constantly) but then there are days full of love that give me the courage to move ahead. Days where Connor tells me:”Mamma, I know you need a hug, come here”. I have THE best sons, ever.

There is a constant pressure to always be upbeat and an ‘inspiration.’ But sometimes there is no lemonade coming from lemons. So, we take the lemons and put them aside and wait for the day where we can go get some Vodka. Because that lemonade, sometimes, needs to be spiked.

Love & Light,