Sunday, March 25, 2012

Miss Anaya

I know that it's been a long time since I've written. Even longer since I've really written something worth reading. Something worth my salt, as it were. I could go on and give you a detailed history of the last few months, but that's not the heart of it. The details are in the moments and the moment is now.

I see her everywhere. I mean that I see her in my imagination. Like when I look at the bathtub. I experience my memories of singing to her in the bath. Holding her while she would float, her head pushing back into my hands, her feet pressed against the end of the tub. When I lay in bed and I cannot sleep I can feel the weight of her head on my chest, where she used to lay.

In the sunlit beauty of a rainbow I see the millions of colors of her beautiful soul and I know she is free. Most of the time my love for her overcomes my grief. But not always.
I was completely in love with her. The love that parents have for their babies. The love that makes you count the fingers and toes multiple times. But it was beyond that. She was more than just a baby. More than my beautiful daughter. She was an angel on earth and when I say she was my greatest teacher I mean it. Completely.

Healing Anaya began as a cause. We wanted to Heal Anaya. We wanted to cure her from her disease, prove the doctors wrong, work miracles. I prayed to every God, screamed for help from the stars, and we tried everything. It was when everything "failed" that I began to learn my lesson.

Anaya was meant to live her life just the way she was. Her purpose for this life was to influence myself, our family and those who came into contact with her. Her essence was pure innocent love. Her body became very weak. She experienced suffering. Struggling to breathe must be one of the worst things that a being can feel. Being in a body without having control - to do something as simple as breathe or swallow - oh my heart hurts from the pain of imagining it and remembering her going through it.

I know that we did the right thing in letting her go when she could no longer breathe on her own. She deserved the freedom, the ability to transform her energy into something new. To rise and expand and be with God, unencumbered by the beautiful fragile shell that was her body.

I would have done a few things differently. I do not live in regret - but I've had a lot of time to thing and there are some things I would do different if there ever was a next time.

I would ask someone to help me thank every single soul who ever helped us. I would make it a priority to let them know how much it meant - and how much it helped.

I would have had my grandparents motorhome inspected before agreeing to take it - and I would not rely on anyone's word who was not an unbiased third party.

I would have flown Brent, Solara, Anaya and Myself south for the winter to spend our final days together in the sun - but I thought this wasn't an option. I thought it was selfish to spend donations that way and impossible to take all of Anaya's equipment etc without a vehicle. We wanted to help others. We wanted to spread the word about newborn screening and about saving beautiful children like Anaya. -

We didn't get very far but I know we had a huge influence on the people we met along the way.

What else would I do differently? I would have taken more videos.

I would not have alienated two of the most important women in my life, that I loved. Anaya's nurses. Difference of opinion happens and I was too hurt and too stubborn to see the other side. But I love them. Joanne and Carol - I love you both.

Those are the only things I would have done differently and there's no point in dwelling on them because they are things that I cannot change. All I can do now is help others - because it makes me feel good. It makes me feel like I am giving back. Paying it forward. I know that my time on earth is short. I know that one day death will come for me and I am ready for it when it happens.- But it's not now!

Anaya taught me to live by putting one foot in front of the other. To go on when there is nothing in sight to go on to. She taught me what faith is, and what it means to be human. Since I've begun living moment to moment things have opened up in the most incredible way. I meet genuinely good people everywhere. I meet people - real deep souls, every day. I know now that we can create our lives to be what we want them to be if we believe that we can. If we have faith and take action and be willing to go too far- just to see how far we can go.

Sure, I didn't live my life with Anaya the way that other people think I should have. But they aren't me, and they didn't live life with Anaya. Let me tell you that I am glad that I had her. I am grateful forever for the experience of being with her just the way she was. It changed me profoundly. I will never be the same.

I see her everywhere. Everywhere. In everything. Sometimes when I am looking into Brent's eyes and I remember her and "see" her in my mind I cannot stop the tears from falling. The sobs from wrenching my heart apart. I sometimes scream in my grief, the same way that I scream in my joy. (What can I say - I'm one of those loud people)

My emotions have always been extreme, since I was a child and my parents divorced and my world came crashing down with the hatred between my two favorite people. My mother and father. But now my emotions are different. I know myself now. I am not as easily caught up in self-pity or doubt. My self esteem has improved and I'm more in love with the world and less attached to it.

Any moment could be my last. That's why I do so much with my life now. Everything is sweeter, more beautiful, more ephemeral. Life is more fun, love is much deeper and challenges are less impossible.

When it's my time I'm going to meet Anaya and I'm going to pick her sweet little self up and spin her around and listen to her giggle. Then I'm going to hear the words "I love you Mama. You did good Mama." and I will smile and say "So did you, Miss Anaya."

Thursday, March 8, 2012

I went to help Anaya's buddy Gabriel in Mexico

Last weekend I went to Monterrey, Nuevo Leon, Mexico to help a sick little boy named Gabriel. He has Krabbe Leukodystrophy. His condition is progressing and his mother asked me if I had any suggestions. It is very hard to teach someone from afar. So I decided I would go there to help. I was there for 2.5 days and It was amazing.

Gabriel's parent's are Mayte and ARmando. Pronounced (Mai-tay). They told me that my visit changed their lives for the better. Gabriel even misses me. I miss him too. Anyways, here is a compilation video of my trip - but most of the really intense training went unrecorded- because I had to type and gesture the whole time - which is not conducive to filming.