A Mother Of All Time

Day 30, awaiting the call for Anna's double lung transplant.

As time continues and each sun rises, each moon becomes full, each breath rises and falls, the clock ticks. We move forward closer and closer to the time when the call will come. Meeting each day with a sense of newness and openness is the challenge. Sometimes I think, how can this story still be told without just a flavor of ordinariness if days and days and weeks and weeks continue to tick by? But the story of our life and of yours continues to unfold. We must trust it all to look for those sparks and moments.

Yesterday was ordinary until I "ran into" an old friend. I was out and about for a bit, walking up the street to buy a few groceries. Walking straight toward me was an old friend from our CF community whom I have not seen for many years. She is a CF mom too. Near us was a small table and chairs on the sidewalk welcoming us to sit and chat. We did and we cried too.

When Anna was little there was a group of 5 families with CF kids all about the same age that lived in Palo Alto. There were other families that we were connected to as well near by, but the fact that we were this group in the same city seemed remarkable. We all became involved in different capacities within our community and the building of our local organization. It was truly an important period of time, as when we first met, the CF gene had not yet been found but soon after, it was. When Anna was born, little was known scientifically about CF and why it manifested as it did. Very quickly research began to surface and bring some understanding. One of the biggest new breakthroughs was discovered by a researcher in southern California who had CF himself. He is still working in CF research.

In our group, one of the fathers changed his whole research career as a professor at Stanford and became a CF researcher opening the Cystic Fibrosis Research Laboratory at the university. Each of us found ourselves in a life we did not expect with this disease and the lives of our children threatened. It changed all of us for ever. It was devastating, but having others to fight with and to learn with made such a difference. The thing is that this disease is not only a one gene disease. Each of us have many other genes that interact with each other making us all unique. Some CFers have more destructive CF genes and some have other helper genes. So, the manifestation of CF in each of our children is unique. There really is no book that we can go to to read about what we should do in every situation with specific instructions in how to prevent lung destruction in each of our kids. We all just did the best we could at the time. The results were very different outcomes for each of our children.

My friend that I met yesterday had two children with CF and later had a third child without CF. I watched this family closely as Anna's age was smack in the middle of those two kids. This was a very dedicated family with many close and loving friends. They were very aggressive in their fight against the nasty bacteria with both kids on home IVs and multiple treatments to be given every day. Their friends took turns helping to pound on the children, make meals and support. It was impressive to witness. They were fighting with all their hearts and very intelligent minds to stave off the ravages. Unfortunately CF wins sometimes. It is nasty to the lungs of some children. Even though there are advances, this disease wins and at different ages. Life expectancy has improved a lot yet, young children do still die from CF.

Their daughter received new lungs at such a young age, in her early teens. She had her precious lungs to breathe with for about 7 years and died at 21 years old. She was the dear love and darling friend of her mother who misses her so much. We held hands about her loss, but she let me know that there were some wonderful years. Her other child is an adult, accomplished a PhD., is doing a post doc program and is improving in his health after his parents intervened with some added support. Lung disease is so rough, it takes so much energy to sustain normal life that even if these young adults want an independent life it can be very difficult.

The pain of losing a child who is your dear friend and is the subject of the destruction of lung disease and then chronic rejection from transplant is tremendous. She told me that another mother who I know that lost a daughter wrote to her describing the feeling that her daughter lives in "the air above her head". This is a lovely thought. Our dear ones never leave us as they become such a part of our hearts. They go with us everywhere and when there is a special memory sometimes it is as if they are alive for that moment next to us, speaking to us, telling us what we need to know. They live in that air above our heads.

I witnessed this family, this mother from a distance, but close, as we were a part of the community. I saw a warrior mother fighting with everything she had. When is it OK for a mother to stop fighting for the life of her child? Never, it can never happen. The need to use all that you have goes on and on and can continue even after the war is done. When that happens we must wrap ourselves in the shawl worn by the mothers of all time who have lost their children and become part of this tribe of wounded mother warriors.

I see my friend with a special head dress made of feathers and amulets with a bright purple shawl of triumph upon her shoulders proving that she was a magnificent mother with everything to be proud of. She is a special member of this tribe of the mothers of all time with a kind and giving heart. I pray for her strength and courage as she has this battle to wage twice in this life time. More than should be asked. May this outcome be so much better filled with miracles and life and breath for this mother and her family.