I know what I have lost; I am waiting to learn what I have gained in its place. Understand ing will come only when we have moved further along this path of healing.
Though some days it is difficult to breathe under the weight of this uncertainty , other days I feel blessed by the unfolding mystery of our days and know that we will emerge from this with extraordina ry wisdom.
How do I know this ? a friend asked me the other day and all I could answer was that I believe that Aaron will triumph in this experience. As much as I often struggle with the commotion of our life or find myself preoccupied with what could happen, or feel fragile in the face of my world as I've known it falling apart, my vision does not include a life without Aaron. I have wondered if holding tight to this vision is a way of protecting myself, but in the end, it all comes down to faith. And I have faith in Aaron.
I cannot be positive all of the time and there is often little time to sit still with my thoughts and examine this experience. Instead of grounding myself in what is happening on a deep level, I am grounded in the merciless nagging details that must be attended to and completed. Each day I work to tip the scales and transcend fear so that I can appreciate the present even with Aaron's fluctuating health. And it is work to maintain joy when so much is at stake, but it is the best kind of work, the work of loving a beautiful man and child.
We are in the midst of a month of testing. Though some of it is to determine where we are in terms of a remission, much of it is required by the insurance company before they will allow the transplant to take place. They want to determine that Aaron is up for the procedure. Tuesday Aaron was in Boston for a bone marrow biopsy and pulmonary functions test. Today is a series of scans with more next week and the week after. Intermixed is additional chemotherap y and doctors' appointment s. The details are being gathered.
Last week a social worker from Dana Farber called to assess the mental state of our family going into this process. The call was unexpected and stirred many emotions in me. As I listened to her cautionary words about the preparation , procedure and rehabilitat ion, and her description s of how difficult these first hundred days will be, my mind incremental ly weighed her considerati ons and merged them with my own. As part of her intake, she inquired about our support network, delving into specific questions about my family and Aaron's. She was immediately concerned about my ability to make it through this situation without a tremendous mental toll. My having lost so many family members to prolonged illness apparently puts me at particular risk for crisis if I shoulder too much of this alone.
As a therapist, I understand the impact of old grief and loss resurfacing at times of great stress. Feeling safe in this world is not easy when you are always looking around the corner for the next thing to be taken from your life. Having a young toddler certainly increases the pressure, she added. This is why I am taking a new approach and living as much as possible for the day I am in without measuring the odds. Still her concerns struck a chord and I began to consider more fully what special combination of ingredients will allow us to turn this obstacle into the best time in our lives.
It is critical, she said, that we have people around us that we can really count on. Do we have people to fill the space of this monumental process? I wanted to believe that we have a strong network, and desired to tell her this, but in the end, I wasn't sure if we had a unified team in place. She asked me to lay out our plan for the next three months and through this, I realized that there are many concerns and even more gaps. Though my friend, Lisa, has gone to great efforts to create a community to buffer us during these difficult months, few people have been able to rally. While Lisa has tried to be a catalyst to draw people to us, perhaps illness is a stronger force in funneling people away.
How much is enough? I now must wonder. I don't have any answers. But there are reminders of those who are present with us and I want to take a moment to thank my friend, Cara, who sent two of the air purifiers we need to make the home safer for Aaron; and Jake and Paul, who sent gift certificate s to Amazon so that Aaron might purchase some items that he needed or desired. I can tell you that Aaron has bought some serious reading material. I think he plans to build an empire while he recuperates.
Jake traveled from afar to accompany Aaron to his doctors' appointment s in Boston on Tuesday. Though it was a long and tedious day of waiting, Jake lifted Aaron's spirits and provided much needed camaraderie. He also gifted a talisman for Aaron to wear as good luck--a battle necklace, a sword to remind Aaron of his power.
My cousin, Jill, has been tireless in her efforts to help me prepare the house for Aaron's post transplant recovery and somehow manages to also make meals and give Sash some extra attention. My friend, Tary, has come to lend me a hand on several weeks and my friend, Polly, has nurtured the little one in her special way so I can accomplish a task or two and also delivered a few delicious meals. A woman I have never met, but am getting to know, Adele, has sent a few meals and offered many wise words of support. And thank you to Mary and Leslea and Paula who sent a meal from a distance. Those were relaxing nights knowing that we had one less thing to manage.
I also want to thank those who have committed to help us in Boston with Sasha and other daily needs: Louise, Elana, and Sarah, Lisa, Jill and Tary. And Frances and Norm who will love and care for our dogs while are away and assist with the the last minute home preparation s.
And to those of you who have contacted Lisa and offered to try to find ways to pitch in or reached out to us with words of support and encouragement.
Last night Aaron brought home a care package from two colleagues at work, Nina and Jodi. It was the first care bag to arrive and as I watched him lay out the DVD's and puzzles, I forgot initially what this bounty was meant for. And then I remembered. In one month, Aaron will not be sitting on our couch, flipping through movies, he will be in the hospital and we will be underway. We did not speak of what we were both thinking. Instead we discussed the selections and reasons behind them instead of imagining what will sustain us through some endless days. I ogled the items instead of envisioning the hospital space or the central line invading his body. I told him how wonderful it is to have friends that want to make his experience more tolerable and we both smiled.
There are layers to every moment. Unknown and familiar, anguish and appreciatio n, pain and relief, despair and delight. Some days it is as if nothing has happened and yet so much has happened. We are following a road that goes on forever and this is what we must wish for as we stand nearer to the beginning of this trek toward Aaron's continued life.
As we take one step and then another, I look for the presence of friends and family who will hand us water and cheer us on, who will bring changes of clothing and comfortable shoes, who will relieve our encumbered arms, who will walk beside us from time to time, or even carry us for a stretch, and for those who will sit with us while we rest without inspection or projection, just company. We look forward to meeting you on our travels.