Blog · September 30, 2016

A Work In Progress

Every person in the world has known heartache and suffering. Sometimes I think about the children with my son’s condition that live in third world countries, or countries like Syria, ravaged by war. There are so many people on our beloved planet that do not have the basic necessities, water, food, clothing, let alone bandages and medicine.

At the core we’re all the same, we all want the same things. From the Quechua woman in Peru to the famous actor in Hollywood, we all want to love, to laugh, to dream, to eat and drink and a roof over our head. We’re more the same than we are different.

There are people out there though, that cannot survive on their own, that need that little extra help. Sometimes more than a little. And it’s not just the fact that they need us to help them with the most basic tasks, they also need us to remind them of their hopes and dreams, help them remind them of what they CAN do, and to let them know we’re always there for them.

ebharderMany parents of special need children face difficult daily challenges but they do not feel like talking about them, so it’s my hope my stories will serve as reminders to be kind to others in shoes similar to mine. It’s truly hard to know what others go through when we haven’t walked their path and don’t know their journey. I am here to tell you the road ahead for us seems endless, but after the initial, rough patch of making this our “normal” (which can take many months or many years depending on the situation), we do get used to it. Not that we ever get used seeing our children in pain, but somehow we learn to cope better, to find solutions that work for us, to put things into perspective.

I feel deep compassion and speak with conviction on behalf of all families affected by this monster we call EB and all the families on this special need journey, and I know I am not perfect. I am still a work in progress. Sometimes I let things get the best of me, and I wish they didn’t but sometimes they just do.

For my sanity’s sake and for my son’s best interest I’ve had to transform myself into a much more positive person, believing in the impossible. All these obstacles demanded a change in perspective and mindset. If negativity had been a dominating influence in my life, positivity had to take over. I couldn’t be weighed down with what tomorrow might bring, it was now my job to make a difference in my son’s life, to make HIM believe.

I’ve been re-reading some books about the Law of Attraction and the Abraham-Hicks audiobooks and when I had Nicky listen to a passage about illness and wounds the other day he almost had a ha-ha moment. The great thing about Nicky is that he has a great way to “forget” he has EB for most of the day while he plays his video games on his computer. He chats and laughs and the last thing on his mind is EB. That is good because he doesn’t sit there upset, worrying about his life, or being negative. The universe listens to our vibration and brings us what we most believe in. I was telling Nicky that I thought this was absolutely true 100%. Everything I truly believed and envisioned WOULD happen in my life, happened. Everything. But if there was even a little doubt-then it didn’t. So now I if there is something I like or want to happen, I vividly imagine it and believe it.

In other words, I make lemonade with all my lemons and add some vodka and having a party. ;-P Who knows what the future will bring, but I am determined to make it good.

Love & Light,