Nicky’s Life Part 7

This is part 7 of an infinite series of photos I am posting on the Facebook page I have for the book I wrote about my journey raising my son with RDEB (Recessive Dystrophic Epidermolysis Bullosa) called Butterfly Child. I am posting a few images from Nicky’s life and commenting on either what was going on at the time or explaining things about the picture per se.

This “picture commentary” will serve as a companion for anyone that is kind enough to purchase and read my book as my appreciation and thanks.

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March 2000 – Nicky is 3.5 years old here in this photo taken at Lucile Packard Children Hospital @ Stanford as we were getting him ready for his first throat dilatation/g-tube placement. It was a decision that was hard to make, but in the end his failure to thrive made it impossible to do “nothing”. At 3.5 years old he only weighed 21lb. Only a 3lb gain since his 9 month weigh in at 18lb. His height and head circumference were also dangerously plummeting. I hated putting him through this, but I felt I had no other choice. It was a decision I never regretted.

He’s clutching his best friends, Timon & Pumba that we got at DisneyWorld a month prior. There is a whole story in the book on how we got those!!!

Here’s the link on where to purchase the book if interested:
http://www.butterflychildamothersjourney.com/?page_id=19

Love & Light,

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Beliefs

“Losing a baby at birth, followed by a (89)

At one point or another in life we have to rely on some aspect of belief to get us through the tough patches of our existence on earth. This is why religions of all kinds sprung up at an early stage of our human evolution. Our souls needed something to believe in. Weather we believe in a supreme energy, a God of some sort, our souls evolving and learning, or even if we believe in nothing and are just muddling through, any kind of way we decide to survive it’s the right path for us as long as it works in getting us through it to the other side of understanding, acceptance and healing.

I suppose my gripe is how some religions decide to throw certain kinds of people under the bus, in an effort to elevate ourselves. I never understood that. Aren’t religions supposed to bring us together? Aren’t religions preaching about loving one another? Aren’t religions supposed to make us better human beings?

After living in North America for over 30 years, and especially in California, a melting pot of cultures and beliefs, it’s quite confusing to me how in one day I can hang out with one person that can be so racist and condemning of others, and then another, hang out with another person so calm and meek, that can be so accepting of everyone and everything. Every kind of person that can exists, I have met here.

I often say to people that childhood and the first part of our life can truly shape us in ways we don’t even recognize. Our further experiences in life can either strengthen or weaken that belief. I see it in my son Connor often. He’s so different from kids his age. Having seen first hand the difficulties Nicky goes through on a daily basis and the struggles of his dad, he’s this little being that can be so crazy and so incredibly compassionate. Compassion for others is truly a gift, no matter how you slice it.

I often come across people that are so uncompassionate towards other’s difficulties, wether financial or emotional it leaves an extreme bitter taste in my mouth. It honestly makes my stomach turn. No matter the situation, they must find a way to bad-mouth them.
Oh.. they are on food stamps, they must be lazy.
Oh… they are on welfare… they must be drug addicts or losers.
Oh… they have an electric car, they must be adults living in their mom’s house.
Oh… they had a bankruptcy, why do people live beyond their means?
Oh… they are gay or transgender… why would they “choose” that (as if it was a choice).
Oh… they live in a trailer park, they must be ghetto.
I could go on… and on, but you get my drift. Why must we think the worse of people? Sure, perhaps a small percentage of people do fit that description, but why do we have to go there immediately?

Why do we assume that ALL people in difficulties brought it on themselves?

I can speak from experience when I tell you, HOGWASH!

Guess what.

I’ve been on food stamps, welfare, I have a Prius, I had two bankruptcies and I lived in a trailer. I must be the trashiest of all white trash, right?

Yet, I’ve worked extremely hard in my life. I worked 90 hours weeks, I held managerial positions, I went to College while working and taking care of my son with RDEB and my husband after he suffered 2 strokes.

Religions and beliefs are unfortunately in the “judging” business and it’s wrong. It’s just wrong. Stop judging and start understanding. Live in peace and help your fellow humans. THAT is what religions are all about.

Love & Light,

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Narration about my book “Butterfly Child”

Just before my 30th birthday I found out I was pregnant with my first baby. All my friends were already mothers and I had wanted a baby for so long that this pregnancy ended up being something surreal. I walked on air for the entire 9 months, it truly was Unicorns and Rainbows all the way.

I was so happy.

Then, the unthinkable happened.

The day he was due, February 26th, 1995, I could not feel him move at all, not even when I ate something cold as he normally did, all my tricks to make him move failed and I was worried.

The thought that he had died never entered my mind, however.

The next morning, a Monday, I went to the Doctor’s office to check things out and that’s where we found out Alex had died in utero.

There are no words to explain how I felt that day. Agony seems such a mild word to describe it.

I cried until there were no more tears to shed for many months, and at the end of August I felt strong enough to try again, but this new pregnancy ended in a miscarriage 7 weeks later.

At this point I felt worse than I did the entire several months prior, if that is even possible, and I knew I had to come to terms with the rage I had about these losses before I could move forward.

It wasn’t until 13 months after Alex’s death, on Easter Day 1996, that I found out I was pregnant again. No unicorns and rainbows this time. Just because I was pregnant that didn’t mean I was going to have a baby. I built a wall of denial around me, I was so afraid of being positive and hopeful that I spent the whole pregnancy in a daze.

On November 25th, 1996, I gave birth to Nicky and for the first 12 hours of his life I was in awe and breathed a sigh of immense relief, until a dermatologist came by to tell me the name of this disorder he feared Nicky had. Epidermolysis Bullosa.

In a later visit he told me Nicky would not live to see his 1st birthday. It wouldn’t be until a month later that we got the official diagnosis of Recessive Dystrophic.

Grief is a funny thing. Having experienced the worse of what could happen, having to have buried my first son, knowing that with Alex we had no chance, no hope, knowing how final death was, I knew Nicky’s life had hope and he depended on me.

For the next 18 years I did everything I could to keep him as healthy and as happy as possible.

In the interim, I learned a great deal of the injustices dealt with those with rare disorders, the flaws of the health care system in America, I found out who my friends were and who mattered in my life. I was never given a pass for being distraught or upset about how much my son suffered, and I had to look inside myself to find a way to move forward.

I never knew if Nicky’s life was going to be short or long. Will he live long enough to graduate from High School? Will he ever be cured? Will he ever know how much I love him?

In many ways, Nicky has taught me who I was, who I am.

When Connor was born healthy in 2003 I just couldn’t believe it. I know most people take their healthy kids for granted. I can’t. Connor is almost 12 now and I still can’t believe it. I look at him and wonder what I did to deserve him. Then again, I could say the same about Nicky. They both taught me to be patient, kind, to love unconditionally.

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New CaringBridge Blog & Butterfly Talk

logo-caringbridge-stacked-facebookA quick note!  I just updated Nicky’s blog at CaringBridge… I talk about a lot of different things going on with Nicky right now. Here’s the link!
http://www.caringbridge.org/visit/nickyz/journal/

Also… I have some great guests coming up for August and September, but since this month is so crazy for me, I decided that on my next radio/podcast show (Butterfly Talk) I will keep it simple and answer some questions regarding my book Butterfly Child – A Mother’s Journey or Jodi’s book “Courage Under Wraps“. So.. if you have any question whatsoever for me or about Nicky or anything I wrote about in the book, such as Losing Alex or my experiences in raising a child with EB, please leave a comment below in the Facebook PlugIn! Thank you so much and many blessings to you!!

Love & Light,

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Nicky’s Life Part 6

11174405_354184164779498_9091659556400647032_o_skThis is part 6 of an infinite series of photos I am posting on the Facebook page I have for the book I wrote about my journey raising my son with RDEB (Recessive Dystrophic Epidermolysis Bullosa) called Butterfly Child. I am posting a few images from Nicky’s life and commenting on either what was going on at the time or explaining things about the picture per se.

This “picture commentary” will serve as a companion for anyone that is kind enough to purchase and read my book as my appreciation and thanks.

April 2000 – Nicky is 3.5 years old here. Wrapping the hands had become second nature. While it didn’t 100% stop the webbing and contracting of the hands (mostly because of all the scarring that happened BEFORE I started wrapping the fingers), it did slow it down considerably. I was talking to Nicky last night about wrapping the hands and he told me I have no idea how much he appreciates what I did for him in my efforts to preserve his hands. That made me so happy… he has no idea how much.

Here’s the link on where to purchase the book if interested:
http://www.butterflychildamothersjourney.com/?page_id=19

Love & Light,

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When I Can’t Explain, I Show.

It has become apparent over the years that 9 times out of 10, when Nicky tells me his foot is really “bad”, I need to brace myself. This is what I braced myself for a couple of weeks ago…

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After I took off the bandages, big areas of skin just started peeling off the top of the foot. I wanted to show this picture because I wanted to illustrate how fragile Nicky’s skin is… it does not even blister anymore in some areas, it just peels off like this. If he has a crust anywhere it will actually “cause” more blisters and create bloody areas too. The crusts dig in the good skin and create more damage. As he puts just a little pressure to take a step, it “moves” the skin and create even more damage.

Nicky took matters in his own hands and started cutting off the peeling skin…

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While not his whole body is like this, many areas are. Different part of his body behave in very different ways. It’s the baffling experience with EB that is hard to explain in words and must be shown to get the point across. EB is our monster we fight every day.

I will keep taking pictures and I will keep showing as long as Nicky lets me!

Love and Light,

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