I was watching an interview with Meredith Viera yesterday on the Dr. Oz show and she said several things that I could completely resonate with, and the one that I could relate to the most is how she felt everyone’s Life was about “Priorities”.

It’s true, isn’t it? Sometimes I wonder how different my life would be now if my Alex had been born alive and healthy: Nicky would never had been born because we had no plans of having children this close apart, so the EB might have never played a part in my life at all. Truly, Alex’s stillbirth and Nicky’s birth completely changed the way I felt about motherhood, life, work, what’s important and my priorities. But I think what effected my priorities more, which I see in other people’s lives as well, is the amount of help I got, or rather, I didn’t get, the amount of time I decided I wanted to invest in my children’s lives, and figuring out the difference between quality time and quantity of time. Both to me are extremely important… but would I be this way if I didn’t always feel as if I want to spend more time with my children because I had to bury one and never got any time with him at all? What if I had my family nearby to help? Would my priorities be different?

390485_10151154001763116_1133000195_nOf course, I’d like to think things would not be much different, but something tells me that they would be. I always wanted to be around for my children and them never having a babysitter, mostly due to the horrendous babysitter stories my ex-husband relayed to me. Also, I waited until I was over 30 so I could be more stable, prepared. But even as I was pregnant with Alex, I knew that we would need to work opposite shifts and we would still need help. With no families nearby, I am not sure we would have had much of a choice. When Nicky was born with EB, however, all of a sudden, we had no choice at all. Even close friends didn’t grasp how fragile Nicky was, and hurt him needlessly. As a mother, this was unacceptable. If I had lived near my immediate family it would have been different, but they were on the opposite side of the globe. How could I trust a total stranger to get how fragile Nicky was? Where do I find this stranger willing to care for a medically fragile child for $2 an hour? Nurses ranged $20! There was no choice. I was forced to quit my job to care for Nicky full time. Was it hard? Financially it was devastating. DEVASTATING. We lost the cars, the house, you name it. And you know what? I would do it again. There are absolutely no regrets in that choice, none whatsoever. My children are THAT important for me. Material things can be replaced, children cannot. Alex taught me that. Let’s just say I learned the hard way. I hate the hard way. Nobody wants to learn how important their children are by burying one. Nobody.

I never take for granted the love of my children. They both constantly want hugs and kisses. I discuss things at length with them and I am so proud of the amazing little beings they are and I know I am responsible for the adults they will become. Do I wish my family was near so they could help? Of course, and they said as much. I can’t blame them though, I am the one that moved. If there was someone to blame, that would be yours truly.
I do have different priorities for Nicky that I have for Connor, of course. My only wish for Nicky is to keep him busy, motivated and hope that he can be happy and if a treatment comes, please make it fast so he has a chance at a life that is less painful. I never expect him to move away from me and I am perfectly fine with that. He’s my buddy. Connor, however, is healthy, smart and confident. Growing up around Nicky and having a dad with health challenges is making him very humble, helpful and considerate. He never stops talking and thinking, he’s constantly asking questions. I want to help him find his true passion and help him pursue it. I am never going to push him to do something he’s not interested in, we’re in this together.

oprah-winfrey-quotes-11I am a woman in process… as Oprah has said. I try to take everything in and learn from it.  When things happen to us, we have two choices: we learn from them or we can endlessly complain about them. It’s so easy to complain, cry, feel victimized, and I know I have done my share. In the end, after we’re done with our pity party, we need to look at the situation with outside eyes and see what we can learn from it that helps us move on. That can be looking for a silver lining, decide to change the way we see or/and do things, or simply trying to make a difference in someone else’s life, no matter in what small way. I don’t know what my priorities would be now if Alex had been born alive and healthy. I can’t think of that now. All I know is that, among endless sacrifices, I am here for my children, and I would not have it any other way.

Love and Light,

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