“Losing a baby at birth, followed by a (83)As a parent of a Special Needs child, I must say that my biggest challenge to overcome is feeling trapped. The feeling of being a caged bird. Mind you, this is not often. Most of the time I am perfectly fine in my role and over the years I’ve come to accept it more and more. Still, there are times where it gets to me.

Please do not misunderstand me.

I have absolutely no plans nor wish of leaving my family behind anywhere. I have known of moms with perfectly healthy kids or even EB kids that felt the need to leave for months, even years, then came back rejuvenated and I am not in any way judging them. If I could, I might do that too.

But I cannot.

For one, I love my family too much to do that to them.

For two, there is no-one to take my place in my absence. No-one.

So, I have to, shall I say, “suck-it-up”.

I don’t so much object to the fact that I have to take care of my family. I enjoy doing that. I really do, no lie. Taking care of Nicky, although hard (and it’s getting harder all the time as he can do less and less), is rewarding in the fact that I get to be in the presence of an extraordinary human being, one that I am very humble to call my son. I also love being married to a remarkable man who truly cares for me, and I cherish being home when my little man comes home from school. I’ve been there every day of his life and I don’t plan to disappear now. These are going to be tough years coming up “growing-up” wise. Being a teenager is not easy and I know for many, these years could make or brake an entire lifetime. I plan to be there every step of the way.

No, those negative feelings are not toward my family at all. It’s mostly to do with the fact that going anywhere is a challenge. Taking a much needed rejuvenating vacation, the kind of freeing vacation where all I worry about is the amazing photos I am going to take the next carefree day is a dream that goes unfulfilled year after year.

I am an extremely nomadic kind of person. I love being outside. I want to go hike, I want to take a train destination anywhere I have never been… I love to travel and if I could I would travel all the time. It’s truly fuel for my soul, part of my being. After all, I live halfway around the world from where I was born. I am salivating over dreams of visiting Hawaii, Scotland, Paris, Vienna, even just New York. Mark my words, I am going there somehow, someway, someday. But not now, and I am not sure when.

Nicky nowadays has a hard time even just getting in the car, so taking him with me on a plane ride is madness, not counting all the supplies I would have to bring along and the challenges of getting around when we get to our destination. He does not want to go anywhere anyways. Despite that, I am still planning to take him and Connor to Italy this summer. They both want to go there… and I want to take them because I want to see my family and I want them to be with family, but I know that trip is going to be… hellish. I have these mixed feelings of being extremely excited to dreading the whole thing. I want to be able to skip the planning, the packing the countless supplies and the trip itself and wake up in Italy. Ahhhh. Yes, “Traveling” per se with him is a chore, not a fun experience, even though I would never tell him that. I am your quintessential Julie McCoy, once is all is said and done we are going to enjoy ourselves, dammit!

Every summer I plan a family trip somewhere and it’s been getting worse and worse every year. It never goes well. Last summer we spent two days in San Diego visiting the San Diego Zoo and Wild Animal Park and it was just not… fun. Oh, visiting the parks was fun, that’s about it. Why can’t my life make travel with my family a little easier? For the moment we decided that if we were going to go anywhere, it had to be somewhere close so we can drive back home at the end of the day. That’s what it comes down to. That’s how pathetic it is.

But… I don’t want to be a victim. That’s my biggest challenge to overcome. So what if I spend days and weeks in my house with the sole respite being a trip to the grocery store or perhaps a trip to the gym? So what if my life revolves around when Outlander and Poldark’s next seasons are coming back on TV? I may be 51, but I still have hopes and dreams. When Connor enters 7th grade this coming fall he won’t get off school until 3pm so I thought maybe I could start a new project or get a part-time job doing something I like. I need to keep my mind busy or it might just explode.

I don’t know.

All I know is that I need to keep positive and keep moving forward.

Where is that cure for EB? We are waiting.

Love & Light,

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