going home

Last night we lay in bed and neither of us spoke; it was silent except for the itching. The new drug brought on board yesterday along with the sedative effects of heavy antihistamines brought Aaron a fleeting sense of relief.

Aaron slept while his body scratched and writhed beside me and I willed him to stay asleep so that one of us would wake less dazed and full of need. I cannot turn to sleep because there is no sleep for me. Some nights I can bear it no longer. It is then that I pray for someone to discover why he suffers and offer possibilities that will work.

This ordeal is not something I want to linger over and yet this is where we are on our journey. I find myself now in a hurry to get through this phase and find the space once again that feels good. Perhaps that space will be our own home. Aaron's doctor agreed yesterday afternoon to release us from Boston to return to New York. While Aaron embraces this freedom, I am reluctant to leave feeling so exhausted and without answers for his situation. Aaron believes that going home could be a catalyst, but no promises can be made now. Our road feels long to me today as we prepare to depart this place. We should arrive Friday afternoon and look forward to seeing our friends closer to home.

Before we leave, I want to thank the people who were instrumental in smoothing our time in Boston. John Wilmoth, the manager of the Marriott Residence Inn, facilitated the most comfortable and embracing stay imaginable, going above and beyond anything we had expected. Jill cleaned and sterilized the room not once but twice, and Tary has been a full service laundry replenishing our room with sterilized bedding and towels several times a week from her home two hours distance from Boston. Both have also shopped, cooked and cared for Sasha at various times during this past month. We would not have made it without their untiring and considerate assistance. Sarah, of course, performed her exceptional contribution that first week, and also helped her mom care for a sick Sasha. Aaron's mom, Louise, stayed on with us for two weeks to help care for Sasha and help us with whatever chores needed attending. Her time with us was significant. Elana joined us the second week and also pitched in wherever and whenever she was needed with Sasha, shopping, cooking, and offering wonderful encouragement. Our friend,Jake, was incredibly generous and reassuring throughout his week with us. He managed to take care of many things that needed attention and also provided immense emotional calm, support and companionship. All of us found his presence to be a blessing. Lisa joined us last week and stepped right in to tend to two emotionally and physically drained friends and one toddler, who is never slowed by anything. She has been our life-line throughout this process, initiating the flow of assistance from friends and family, and making herself always available to us despite her own very full life. We cannot thank her enough. Her children each received Visa gift cards for their birthday which they chose to donate to Aaron. This family is beyond caring. Rounding out the month is my cousin, Jill, who has once again just effortlessly come forward to give of herself. Our aunt, Frances, has been living at home caring for the dogs and taking care of our NY life so that we could focus on what needed to be done here in Boston. Her husband, Norm, joined her during a particularly challenging week when we lost power and needed many issues addressed in the house. It would have been impossible for us to be here without their assistance. As well, Aaron's aunt, Sue, helped to coordinate care for Sarah's sons, Nathan and Ari in California. Her contribution allowed Sarah to take the week to be here with us.

My friend, Lori, was continually a much needed spirit booster and sustenance deliverer, coming many times with food, smiles and sage advice. Cheryl came forward with essential items for making the room work better for us, stocked us up with food, did laundry, researched alternative healers for Aaron's itching, and always checked in to make sure that we were not in need. Clare, Sue, JP and Kathleen, brought much needed supplies that got us through challenging days. Sarah allowed us the use of a high chair and also sent along a Whole Foods card. Melinda offered us the use of a crib, cleaned it, and her husband, Gareth, delivered it to us and set it up. Several people sent along Whole Foods cards; Leslea and Mary and Christine so that we could cook Aaron lovely, healthy meals. Simon and Kate sent a contribution toward items we might still need and we plan to put that to good use immediately.

Shelly contributed a night at the hotel; Vadjista and Amin paid for several; Jake also thoughtfully contributed toward the cost of the hotel stay. Several others donated points that accrued and also offset the number of nights: Jill, Mike, Megan, DB, Olga, Elizabeth, and Tary's fiance, Tom. A friend of Lisa's whom we have never met, Daniel Ramirez contributed enough points for one night.

Lori and Tary each knit Aaron two lovely organic hats. Crissy sent him yummy organic cotton scrubs. Jill brought him a nice organic lounge wear set. All have been put to good use.

We have so much appreciated the notes and letters of support during this past month and look forward to your continued friendship as we transition home.

Thank you for being present for us during these challenging months.

fondly, Michelle