Blog · August 15, 2016


I came across this blog this morning and it gave me pause…

It spoke about the sacrifices of a special need parent and what’s involved, which include depression and problems with self-worth among others pressing issues, such as isolation and financial problems. I saw myself in this post… the myself of a few years ago, and how low I felt. The lowest low one can ever imagine.

I can’t help but feel that special need parents, as a community, don’t get enough attention nor respect in that regard. Nobody can ever say we don’t make sacrifices for our kids! I see family members dropping off their kids for weeks, even months to grandparents or other relatives, while we cannot even go to the movies, and I see a big gap in consideration for those whose life is tremendously tougher. There is nothing I can do about it, but I see it, loud and clear.

ebheartI admit that my life has gotten much easier over the years. I was indeed at the same point as this one mom many years ago. I had no extra cash whatsoever. I wasn’t even getting bandages, as I wrote about in my book. Thankfully the state of California rectified that when I moved here in 2001, the blessings of living in a blue state. First CCS started getting me the bandages I needed to take care of Nicky, then the insurance was forced to (long story, also in the book). IHSS then started helping me financially since I could not work and it was HUGE!! Back then I could not go anywhere without Nicky, I had no freedom at all. I still don’t. Nicky has now graduated, so he no longer goes to school. I can leave him alone for a few hours, longer if my husband or Connor are home as well, but for me to be able to do anything more involved, such as if I was going to be gone all day or even overnight (an extremely rare occasion!!) he has to be with his dad. He’s the only one that can manage Nicky’s intense needs, which are getting harder and harder as the years go by as he’s getting less mobile. The great thing that I am thankful about is that he has a great dad. We may no longer be married, but we’re friends, which is more than I can say for many divorced couples. I am lucky. I know it. Nicky’s lucky most of all, as he has a caring dad.

But is reading blogs like this that made me realize how far I’ve come. How much healing I’ve done to my soul since those dark days. They say “accepting” is the key to happiness, and there is some truth to that. I can’t change the fact that Nicky was born with this horrific condition, and while I will move mountains to heal his wounds and make EB part of the public consciousness, at the same time I had to move on and do things that I “can” do within my realm of possibilities, within these four walls. This is tough to do for someone who would travel at every turn if she could, but I made do. It’s a blessing I love to write, I love to read and I love movies and TV has gotten so good the last few years. I gobble it all up. It all helps me with my self-worth which at the end of the day helps me care for Nicky. Healing myself helps me be the best mom I can be.

Speaking of healing… Nicky’s new cream, the Zorblisa I spoke about in my last post, is working. Now that we’re home, I added the other good stuff I normally put in my “concoction“, such as the cannabis, the diaper rash cream, medihoney etc., and I’ve seen EVEN MORE healing. The left knee is almost completely healed… the big wound from the trip is 1/3 healed in 10 days (it’s a record) so I put this stuff everywhere. I think Stanford will be pleased when they see Nicky’s arms. Nicky’s right arm was completely raw for months and since starting the cream a little over a month ago, it’s about 1/3 or more healed. Of course he still has EB at the end of the day, but healing wounds is imperative to keep down infections and skin cancer. EB patients don’t die from EB afterall, but from infections/cancer and other related things, so keeping him healthy is my big concern until science can make it go away. Hopefully sooner rather than later….

Love & Light,