How I Got From There to Here Part 5 November 4, 2011

The next morning after not much sleep, Marilyn filmed our reaction to our long-awaited day.  The last four months had felt like a lifetime.  I was optimistic, Sage’s father pessimistic.  It was exciting and petrifying.  Dr. Wood reviewed with us the possible outcomes and stressed the importance of Sage’s quality of life.  We had to be prepared for any outcome.  Family joined us as we waited through the surgery.  We stayed at the Ronald McDonald House.  For those of you who shun McDonald’s fatty Happy Meals, I can tell you that they got it right with the Ronald McDonald House.  It is a place for family of chronically ill children to stay while they are hospitalized.  It was a beautiful, peaceful space away from the hospital.

Several hours later, the transplant team and Sage emerged following a successful surgery.  I remember the first time he opened his eyes and looked up at me.  Sweet, sweet boy could smile with his eyes.  It was the last time I would see his spirit through his eyes.  By the second day after surgery he began to look glassy-eyed, and by the third day he was in a coma.  His body had rejected the liver causing toxins to build up in his body and fluid put pressure on his brain.  This was the moment Dr. Wood had spoken about.  We had to think about what kind of life we wanted Sage to live.  He was brain-dead now.  We had to decide about keeping him on life support.  After much painful thought and a multitude of tears, it was decided that the best thing to do for Sage was to let him go.  As we said our good-byes, the entire staff and transplant team cried along with us.  I struggled with the “what ifs” for many years following.

There was no question at his death that we would donate his organs.  Because of the medications he received, we were only able to donate his eyes.  His gift restored sight in two individuals.  I am sure you can see his smile in their eyes.

How I Got From There to Here part 4 November 1, 2011

A reporter, Marilyn Moritz, from a San Antonio news station, contacted us about doing a story on organ transplants.  She met with us and then followed us around to various appointments filming our journey, not anticipating the outcome.  The story that aired from the beginning of our journey to the end was beautifully illustrated and brought everyone including the news anchors to tears.  If I can figure out how to get if off of VHS and into this computer, I’ll include it in another blog.

The day finally came…Linda from the transplant team called.  At this point Sage was eight months old and doing better than ever.  He had a good appetite, was gaining weight and excelling developmentally.  From the moment I picked up the phone until the words left her mouth was an eternity.  Her words were those that I had so anxiously awaited and at the same time feared, “We have a donor”.  So, we headed for Houston, with Marilyn and the news crew in tow.

How I got from there to here 3 October 27, 2011

We continued to live as normal as possible, just waiting for the phone call that a donor had been found. Normal being a handful of different medications and vitamins each day and inserting an NG tube for feeding at night. I continued to try to deal with the fact that we were essentially awaiting the death of another.  It just didn’t seem right to me, one life for another.  I could only hope that the person who would be the donor had fulfilled their purpose in this life.

Sage got his first teeth.  He liked looking at and touching books as I read to him. I played a lot of music to soothe him.  He just kept on smiling, laughing and playing.  Our friends put together fund raisers.  And the rest of the time was spent just loving him as much as I could each day.  Each time the phone would ring I would jump.

 

How I Got From There To Here part 2 October 26, 2011

For the next four months we attended doctor’s appointments, received therapy at home and connected with all the amazing people who would become our support network.  We got involved with Transplants for Children, an organization in San Antonio, where I met many families, who became friends, going through similar sagas.  Some with happy endings, some not.  I met Shelley, an amazing girl, whose daughter was a transplant recipient.  They gave me hope, and showed me how important it was for me to be strong. Shelley became my refuge when things got hard.   Then there was Maria, Sage’s therapist, who came to our house each week to work with him.  We became lifelong friends.  She taught me the importance of patience, listening twice as much as you speak and that it was okay to cry.  She was always there with an open heart and an open ear ready to listen.  She also taught me how yummy coffee is when you add cinnamon, which I still do to this day.  And let me not forget Jade, Sage’s sister, who was always full of love, making him laugh and keeping him smiling. My sister Michele kept me going.  She helped me feel like life was still normal and was always there to comfort and cry right along with me.  My mom, always there to support me no matter what, got a special leave from Operation Desert Storm to be with us and actually met Sage for the first time. There really are not enough pages on this blog for me to describe how grateful I am to my friends and most of all my family who carried me through this most difficult time.

We met with Dr. R Patrick Wood and the transplant team at Hermann Hospital in Houston.  They had done a transplant just a few months before on a little girl of 8 months.  Dr. Wood was straightforward and to the point.  He did not sugar coat anything.  He thoroughly explained the process and what we had to look forward to.  I had complete confidence in his abilities.  The team was kind and compassionate and genuinely cared about Sage’s quality of life.  Sage was placed on the National donor list for a liver transplant.   And then we waited…

Maria working with Sage

Friends at Transplants for Children

How I Got from There to Here October 25, 2011

This blog and subsequent website, Spirit of Sage Reiki and Wellness, are inspired by a life changing event.  The event was the birth and the death of my son Sage.  And though it is heartbreaking, my life would not be what it is today had things happened differently.  It has been 20 years since the passing of Sage and I feel that in our story there is a beautiful message to be shared by all.  Through his life and his death I learned how to survive and escape abuse, the true value of life and strangely the value of death, the preciousness and importance of family and friends, how to be grateful for everything no matter how small, how to caress the sounds of birds singing, trees swaying and all of natures music, the importance of connecting to spirit whether it be God, Buddha, Source or whatever you may call your divine, and also how important it is to take care of myself, mind, body and spirit, so that I can help take care of others.

In 1991 I was blessed with the birth of Sage.  He was an extremely happy baby, always smiling and wise beyond his years.  At his two month check-up he was a little jaundice, and by his four month check-up it had not improved.  After some blood work and a liver biopsy he was diagnosed with Biliary Atresia, a condition in which bile does not drain correctly from the liver.  Our only option was a liver transplant.  I was elated at the sign of hope, but struggled with what it meant.  It meant that we waited, not only for a liver that would mean my son’s survival, but for the death of someone else. I wasn’t quite sure how to pray for that.  Someone else’s loved one had to die so that mine might live.  Not only that, but they had to make a decision about whether or not to donate their organs.  I really struggled with this.  What of this other person’s life?  Was their purpose to save the life of my son? How horrible and selfish I felt as I awaited the call that there was a donor.

I felt scared, confused and helpless and all the while he kept on smiling.  Even as his little body suffered the effects of chronic liver disease, no one would have known he was sick.  When I would change his diaper he would stare up at the ceiling and giggle.  I realized later that he must have been smiling at the Angels as they prepared him for his departure.