Me and Acacia
Just look into those eyes. Those eyes have always been so full of love and hope. Like lots of little girls, looking forward.
Looking forward to growing up and calling boys and going to the prom and driving and getting through high school and attending a great college.
She's always had hope and lot and lots of courage. But my daughter is not like a lot of other little girls.
She's been through so much already in her young life and now she looks forward to a double-lung transplant surgery
and all the rehabilitation and treatment and therapy that will follow.
Acacia and I have been apart her whole life. She was moved to Massachusetts when she was just 18 months old.
From that time we have built our bond the best we could.
Over the past 14 years I've gone to see her most every summer and every winter. For many years I would fly out to Boston on Christmas Eve
to pick her up and be with her part of Christmas Day and part of her birthday which is December 29th.
We would do the things a dad and a 3, 4, 5, 6, 7, etc. year old daughter would do.
Go see movies, ballgames (I've made her a baseball fan), shopping, eating and always going to the mall.
The mall was warm (or cool) and safe, and it wasn't sitting in my motel room.
As she got older she was allowed to come out to California. I'd fly out to Boston, rent a car, and drive an hour to go get her.
Then we'd go back to Boston, hop one or two flights back to California to see her family here
and then in a week or two, we'd reverse the process. It was so wonderful the times we spent at home together here.
Baseball games, Hollywood, Malibu, Universal Studios, swimming, Nana's house and of course, Disneyland.
In March 2002, I had to fly to see her in Children's Hospital Boston.
That spring, she diagnosed
with
is so high that it is life-threatening. Her mother and I were told what we could expect as to the effects of a double-lung transplant
and that they had decided to try an extremely expensive experimental medication called Flolan that is administered
through a tube in her chest and delivered from a pump she would have to carry 24 hours a day.
We were told that this treatment would not cure her. That it was just 'a bridge' until she could have the transplant surgery.
She couldn't fly. She couldn't swim. She couldn't run and play and enjoy a normal life.
And just to take a shower was to use underwater gear to protect her pump. The medicine had to be made fresh daily using syringes
and had to be keep cold with ice packs that had to be changed every for hours. Everyday.
Despite this, those eyes continued to sparkle.
Still full of love and hope and she continued to bring happiness, love and hope to everybody she'd meet.
With her pump on her back and the tube in her chest, she'd sing and dance and horseback ride and root for her Red Sox and enjoy her music.
Acacia loves music. When she'd go to bed, she'd be hooked-up with her pump, her oxygen and her iPod.
For the past 5 years, I'd still go back but now sometimes in the spring and sometimes in the fall.
We'd plan different outings as she's gotten older. We pack-up her meds and oxygen machine and sometimes hit the road
for a couple of days. A few nights in Boston or Providence and last year, two nights in New York City. She loved that.
Last Christmas I went back and we had a big party for her sweet sixteen birthday. She invited all her friends and had a blast.
The next morning she collapsed and was rushed to the local hospital then transferred to Children's.
We spent New Year's Eve in the hotel room while she was recovering. She was asleep at midnight. I kissed her anyway.
She has been getting worse and worse. Every headache, backache sneeze or sniffle is so scary. It's so hard to be so far apart.
God has blessed us in so many ways but none more so than with the advent of cellular technology. I tell people all the time, 'a hundred years ago
I would have never seen my daughter, now we talk several times, everyday'. As we say to each other -"Coast to Coast -Unlimited Calls".
But now she's gotten even worse. That 'bridge' we've been on has been crossed and now she needs new lungs.