Bringing the World In - Especially when it's Hard to Go Out

Caregivers don't have time or energy to "go out" a lot of the time. This is exactly why I got the computer in the first place. I had a feeling (especially after doing research about bone marrow transplants) that we weren't going to be able to go out for awhile, so I wanted to bring the world IN. This is when I got on the internet. I did some very interesting things soon after Cristina was diagnosed. I researched about everything. I watched as much ice dancing as possible. I drove Cristina crazy. We laugh about it now, but I really watched alot of it. I had to focus a great deal of attention on whatever beauty I could find. I also HAD to listen to "oldies" music. I immediately tapped into as much teenage/dancing energy as I could.

I love finding art work... and I love sharing it!

Single Mothers... Resilient, Radiant, Remarkable

In 1993, I founded and published a magazine for single mothers called "Against The Odds." The staff was all volunteers and all single mothers. We distributed about 10,000 copies every other month in Chicagoland for about 1 1/2 years. I wanted to do this because there was always so much negativity surrounding "broken" families, and how the children of single parents were somehow not as good as children from "whole" families.

I also became a minor "celebrity" and was considered an "expert" about single parenting during that time. Oprah Winfrey did a show on single mothers and I was a guest panelist. I got a call from one of Chicago's big newspapers to give my opinion about then Vice President Dan Quayle's use of "Murphy Brown" as an example of single mothers and how we were hurting the good American "values" of family. We also gave workshops and had several fun events. I re-typed the explanation for the Logo I used for the magazine (I lost the discs many years ago). I really DID have a life before I was a caregiver. Hard to remember, but I did!

“LOGO:

I was raised in the South Bronx, New York where the view outside my bedroom window was a brick wall and way, way in the distance, I could see the very top of a tree. I remember loving the top of that tree and thinking that by looking at it, I could forget the brick wall and the ugliness surrounding me.

There was a song that came out in the 60’s called, “There is a Rose in Spanish Harlem” by Ben E. King. I loved that song too. It reminded me of my brick wall and my tree. The song is the story of a rose that grows and blooms out of the sidewalk in one of the poorest, most violent and dismal ghettos in the country.

To me the song symbolizes how beauty, joy and victory can flourish even out of the most negative and adverse circumstances. That’s why I chose the logo of a rose growing out of a sidewalk for this magazine. “Against The Odds” is dedicated to the single mothers and their children who survive, flourish and succeed out of sometimes desperate circumstances. There IS victory among the thorns. The magazine is dedicated to you single moms, you are the Roses… It is your passion for life and your will to survive that this magazine recognizes and celebrates.”

Dancing in the Mourning

As I think about my experience with my daughter’s struggle to just STAY ALIVE for so many years, I realize that, because of how long and how many times she hovered between life and death, I never really had the time to MOURN all the times I “buried” her and didn’t think she was going to make it.

I remember one time in the hospital, while she was in bed and I was sitting in the chair next to her, saying over and over again to myself, like a mantra… the "Lord’s Prayer." I remember another time her Uncle Phil was coming and I sat there saying to myself over and over again, like a mantra… “just stay alive to see Uncle Phil one more time.” These are only two examples of the, literally, thousands of times Cristina was so close to death. This doesn’t count all the other times she hovered between life and death at home and in the hospital and all the times I actually went out with a pager and she paged me because she was having serious difficulty. I would have to drive home… not too fast to get stopped by a cop, but not slowly because… the worst thing would have been to get home and find her dead and that she had died “alone.” That was one of my mantras as I was driving home for another emergency: “You are not alone. You are not alone. You are not alone.”

How many times can you “bury” your child without going insane? How many times can you do that without having the time or energy to really “mourn” this? Another aspect of this whole thing that was extremely difficult was that over and over again in my mind, I’d think about… what would Cristina want to be buried with? Do I talk to her about that? Do I ASK her about that? I didn’t know if she would want to be buried with her jewelry or if she would have wanted to “gift” certain friends with some of her things. I knew I’d bury her with her “blankey,” a childhood gift from her father that she’d slept with for many years. I knew I’d put music in her coffin. I knew I’d put flowers in with her. I was also afraid I’d throw myself in there with her.

As time has gone on and Cristina is no longer fighting for her life in the way she was for so many years post-transplant, I’m realizing that I never mourned all this. And then I got cancer. Malignant melanoma about 7 years ago. I never mourned my potential death… I was too concerned about how Cristina would handle it.

What was one of the ways I coped with all this? Dancing, of course! I found Argentine Tango. Argentine Tango is one of the most passionate and expressive of dances. For me, it was ONLY in Argentine Tango that I could express the pain, sadness, and ache in my heart about my daughter’s condition. It was this incredible combination of pain, beauty and sensuality all in one dance that, in any way, eased my heart.

So I Danced in the Mourning…

Venus is the Goddess of Love and so am I

I had to learn all about "BEING" love when my daughter was diagnosed with leukemia in 1994 and I was her primary caregiver. I wanted to write a book and call it "Memoirs of a Love Goddess" because her need for unconditional love, kindness and comfort was so critical. There were so many times for so many years that her life hung in the balance and I had to make constant life and death decisions. I also learned in this time that sometimes there just are NO words that can say enough. I learned to BE love and that my presence was what was important. Love just constantly flowed out of me to her. I also took into myself and stored up everything and anything of love, joy, beauty, radiance and sensuality that I could find to bring back to her either at the hospital or at home since there were many years she basically couldn't go out. I had to bring "Life" to her. It is an amazing experience to find out just how much you can love another person, and how much love is actually in you and available when you need it. We were also the focus of much, much, much prayer from probably thousands of people. My daughter is a survivor and so am I... Whether the loved one survives or not is not the issue, tapping into Love really does seem to be the answer.