Visiting a Dying Friend

My friend Julie says it best "Six year old boys should be worried about where they left their favorite lego figurines... Parents of six year old boys should be worried that the kids at school will be kind and play fair... they should not have to wonder how life is going to go on after their child takes his last breath."

Julie's son Isaac is in his final days of life. Levi and Isaac are friends.

Yesterday the boys, my mother and I went to visit Isaac and his family. For our children friendship is a rare thing, in great part due to their combined developmental delays and medical complexities. And yet Levi and Isaac have managed to find in each other a friend who inherently knows them and a bond that surpasses anything words could say. They have only seen each other three times, all of which were during a week our families shared last summer at Faith's Lodge in Wisconsin, thanks to the support of Crescent Cove. Julie and I met previously, three years ago, at a moms retreat hosted by the MN DeafBlind Project. We have tried on many many occassions to orchestrate a way for our boys to meet, but so much has gotten in the way, not the least of which has been the intensity and complexity of caring for our children.

In many ways our boys are remarkably alike, so much so that they could be easily mistaken for brothers. Not because of similar cultural backgrounds or features resulting from a common syndrome. In fact their roads to a life with profound brain damage could not be more different. And yet the shape of their face, roundness of their cheeks, their soulful brown eyes, to-die-for long lashes, richly soft dark brown hair, slender fingers and limbs, and overall size give them a look of brotherhood. There is also something about how they have managed to radiate a pureness of love and communicate it with little movements and no words. In their own ways they are like Rabbis, teaching deep spiritual truths to the world around them through the embodiment of those truths.

Yesterday, in the precious two hours we shared with Isaac, he was in a state of deep calm and peace as he lie nestled into his mother's arms. Much of the time his eyes were open, responding to our voices and touch. He peeked several smiles when we gently stroked his soft hair and talked about favorite moments in his life. With ease he shifted his attention from our voices, to Levi's touch, to his mother's bosom; from this world to the next. Given that he had been untethered three days earlier from the medical realities that had previously sustained his life (oxygen, feeding pump, monitors, and a long list of medications), I was surprissed to witness just how present and responsive Isaac continued to be.

In many ways I found that his spirit was able to shine through with greater ease. His distinctive personality, though being diminished as a result of his natural dying process, was still very much present. It had been Isaac's wish to become untethered, to be allowed to make the shift from this world into heaven. He was ready for this transition. It was us adults who were taken by surprise and having to catch up with Isaac.

Once again the deep spiritual connection between our boys was evident. As we moms took turns in helping them hold hands, we recognized they were communicating at a depth that went beyond even our own experience and comprehension. At the end of life, when words fall away, for these two, who have never formed words, they were already fluent in the language of the Spirit. Isaac choose to keep his eyes open where as Levi kept his closed much of the time, allowing his dialogue with Issac to take center-stage. For Levi, Isaac was the only one he wanted to commune with. His sole purpose that morning was his friend.

It is in these moments when I see Jesus in a new way. When I wonder about all that Mary, the mother of Jesus, experienced simply because Jesus was her son. When I realize again that God is fully un-knowable, and yet he gifts us with these glimpses into his vastness through children like Levi and Isaac.

Being able to share time with Isaac, Julie, and his family was a rare and precious gift. It was sacred. Not everyone is able or willing to welcome you into their home when their child is making his transition from this world into heaven. Not everyone can recognize that their profoundly challenged child needs opportunities to say hello and goodbye to their friends. Not everyone can love and hold their dying child while you are simultaneously loving and holding your child who (for the time being) will remain. Not everyone can talk about looking forward to getting time to hold your child, with his strong resemblence to their son, as a part of their grieving process after his death. Not everyone can be as present and articulate as my friend Julie. She is a rare friend whose own journey is so saturated with the presence of Jesus that it becomes a light unto my path.

As parents of children with medical complexities, there is a lot we "do" for our children. This is a 24/7 doing. We literally become nurses and physicians for our children as we both participate in and manage this "doing." We lead a small army of caregivers within our home whom we train to become adept at the customized care our child requires. We become as nimble as an ICU in tracking and responding to the slightest shifts in our child's health as we try to stay ahead of the curve of a major illness. We eat/sleep/breathe the realities of our child's medcial needs. Always on the search for something new that will help increase our child's comfort. Add to this the layers of a child's needs educationally, socially, emotionally, spiritually, developmentally and you soon see their complexities go far beyond their medical needs. Year after year, this "doing" becomes the rhythm of our lives. All the while trying to intensely listen to our child, for they are our great teachers in this process we call life.

And then one day our child's leading shifts. It is a gradual shifting and can be very difficult for us as parents to discern. Through their bodies they begin saying 'no thank you' to the things we have been doing daily to care for them. Things like feeding them, giving medications to ease their symptoms, or providing activities for their enjoyment. This no thank you process is different for each child. Eventually there becomes an understanding between the parent and the child that it is time to allow the "doing" to cease. It is time for all of this energy to shift towards just being present together. This is a radical shift for a parent to make. It is very difficult to allow the 'doing' to cease and to trust that our 'being' is our doing. To trust that all that we 'did' has allowed our child to be able to lead us into this new season, this season of their dying. It is so much easier said than done. It is overflowing with emotions. Emotions that can pull us out of our child's request to only be present with them. All of the layers of nurse, doctor, scheduler, manager, educator..... for the first time, they all get to be shed. We finally, finally have the opportunity to just be mom and dad.

This was the space my friend Julie was in when were visited her and Isaac. She talked many times about what a gift this was for her to...just...be...mom. To allow the impulses to check his O2 numbers, or keep her eye on the clock for the next medication, or remember which specialty physician he was due to see next, or....to let that all fall away. A gift to hold Isaac for hours on end; loving on him, telling stories about his life, teasing him about not wanting to be called baby eventhough he was her youngest. A gift to feel him soaking up her mother's love for him. Even as the hospice nurse arrived near the end of our visit, and they talked about options on how to continue to support Issac's comfort, I witnessed her choosing options that benefited Isaac while also keeping her in her mom-only-role.

My emotions have been all over the board since our visit. I am thankful for the peace in both Julie and Isaac's heart and body; Thankful for the brotherhood and friendship our boys share; Thankful for Julie continuing to be open, welcoming, and transparent; Deeply sad about the realities of Isaac's imment passing and just how close to home this whole experience is for our family. Tears fall easily for his parents, who are so bravely following Isaac's leading, who are being fully present with him every step of the way. Tears fall easily at the thought of his body no longer being inhabited by his soul, as the chasm separating this world from heaven becomes a greater reality. Tears fall easily for me and my family; For Levi's loss of a friend; For this reminder that his life will also be shortened and the great possibility that someday it will be me sitting in Julie's chair. I am trying very hard not to enter the world of anticipated grief for Levi and his some-day passing. I am trying to let this be all about Issac and the light his life and death radiates into ours. I am trying to let Levi be a living example that life does continue on after people we love go home to heaven.

My only source of comfort has been the Lord. Meditating on his Word as a reminder of his character, his promises, his ever-lasting presence here and in heaven. My prayers and dialogues with the Lord have been unceasing. Every moment I am awake, Isacc and his family are on my mind. Every moment between moments I am contemplating Isacc's dying process and how the Lord's peace has been so profound. Singing the old hymns (Isaac's favorites) as the Lord brings them to mind; Singing them to strengthen my faith, ease my grieving, and singing them over Isaac and his family as a way of staying connecting by means of the Holy Spirit. I have taken more time to feel and appreciate the breath in my body, the breath in Levi's body, and acknowledge that this is the Lord's doing. Even with all that we "do" as parents of children with medical complexities, at the end of the day, our breath is the Lord's.

It is Thanksgiving season. Soon we will enter Advent on our journey to Christmas. Many Psalms come forth in this time of year. Tonight Psalm 100 is one that I will speak out loud for Isaac as he makes his transition into heaven. It as much a celebration of the Lord as it is a release of Issac's soul into heaven. For tonight my 'joyful noise' is the sound of my weeping, a broken hallelujiah.

Psalm 100

Make a joyful shout to the Lord all you lands!

Serve the Lord with gladness;

Come before His presence with singing.

Know that the Lord, He is God.

It is He who has made us, and not we ourselves,

We are his people and the sheep of His pasture.

Enter into His gates with thanksgiving,

And into His courts with praise.

Be thankful to Him, and bless His name.

For the Lord is good;

His mercy is everlasting,