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Love after Losing a Child

Last year on Valentine’s Day, we were preparing to leave for St. Jude—a final glimmer of hope for our son. Instead of going out on a date, my husband and I were at our local hospital getting a final dose of antibiotics infused into Rett hoping to protect him from a plane of germs.

I took a picture that day of him looking to heaven, and now I know he was asking his God, his ancestors, his spirit animal, for freedom from his suffering. It was one in a series of photos that would follow that week, all of which fracture my heart every time I look through them.

Rett would die eight days later after a whirlwind trip to Memphis, a torturous discovery of multiplied lesions covering a third of his lungs, a medevac flight home, and goodbye visits from all his family. As far as death goes, it couldn’t have gone better. As for our life, though, the nightmare that had started nearly 4 months before, had just cranked up another notch.

For Jim and I, and for every couple that loses a child, continuing to love each other with two broken hearts takes serious fortitude and attention. The statistics are not on our side—something like 75-80% of bereaved parents divorce (although in my experience, the percent is lower). It’s so very hard when you’re both in your own trenches of grief to support someone else. There are many ways to grieve, but if I were to categorize, what I’ve seen is that women wear it and men overcome it—neither approach being better than the other; either being healing or destructive.

So far, we have been pretty lucky at understanding each other’s methods of grieving, only encountering a few hiccups along the way. For me, I have about twenty new mom friends that I talk to regularly to keep from feeling alone in this painful world of child loss. And I purposely started Rett’s Roost so that I could continue to encounter the people and stories that make up my own journey. It is who I am—a bereaved mom willing to share, and by taking on this role, I feel as though I can continue to live a fulfilling life.

Jim, like most bereaved dads, hasn’t sought out new relationships. He has other helpful ways to work through his grief. Jim has a voice for Rett that he talks to me with daily. His bond with our dog Lucy has been taken to a whole new level. And he looks forward to making us delicious and skillful dinners most nights. He writes poetry in words and phrases that are beautifully elusive and private, while at the same time tender and expressive. His creativity extends into his work in sports-writing, where he has lost no passion or efficiency. And while we have both become somewhat more reclusive this year, he is always reminding me that we still need to go out sometimes and enjoy life.

Of course, like every couple, we argue. And while I find him to be completely irrational when the Knicks or Michigan State is losing, I could not ask for a more respectful, honest, and reasonable husband when it comes to our disagreements. One thing about being married to a writer, he knows how to communicate his thoughts; and maybe it’s his Midwestern nature, but he absolutely never holds a grudge or lets me go to bed angry.

There are waves of grief that hit us every few weeks but hopefully, not at the same time—when one of us is drowning, the other is there to rescue. He is there to hold my heart and I to hold his. Without him, I’d sink to a deeper level of loss that I cannot comprehend. We acknowledge each other’s pain as equal to our own, and that has sustained a love this year that could easily have shattered.

Today we profess our love for each other, next week we will offer that love to our son, and with that abundance of love, in early March we will welcome our daughter into this world. It is with our great loss that we continue to gain great love. To us, the only way forward is together.

When Suffering Empowers

About one year ago, we found Everett’s cancer in his liver. There were no signs of him having a health issue, until one day, I noticed his belly seemed hard and he was strangely inconsolable. We found out the type of cancer, a malignant rhabdoid tumor, is one of the rarer and most aggressive cancers found in a child under 18 months. Throughout his treatment, they kept reminding us, “You can stop treatment at any time; there probably isn’t much use.” After three cycles of chemo and a surprisingly successful liver surgery, his now-metastasized cancer had taken over one-third of his lungs and we were sent home on hospice. After just three days, it was time for him to let go of this life.

This may sound crazy, but we were one of the lucky families—only a total of 3.5 months in the hospital and just a handful of days of knowing there was no hope for him. Other cancer families with a terminal diagnosis spend a year or more in-patient watching their child suffer, and up to five years fighting off disease before they ultimately have to say goodbye to their little heroes. And while 80% of children with cancer do survive in this modern day and age of medical advancements, most of them are left with life-long chronic pain, weakened immune systems, and mental anxieties. We felt blessed our child would not endure that kind of life and his suffering did not last long.

The reality for us became trying to feel gratitude amidst our suffering. My husband, Jim, and I decided the best way to heal was to look for the light within the darkness (knowing one cannot exist without the other). When we look back, we were grateful Rett was comfortable and peaceful during his last hours. There was no medical emergency or rush to save him, we were home and got to hold him and talk him through his passing, just his mama and dada by his side. Throughout this unbearable time in our life, we were completely supported by our beautiful communities of family and friends. We didn’t have another sibling at home to help understand. And Jim and I could take time to heal after because of the financial support we received. For all those reasons, we were able to accept the loss of our child knowing it would change our lives forever—but for the better.

There was one thing I knew almost certainly after Rett was diagnosed—my career as an environmental researcher would become part of my past. But I also had taught yoga for years, and knew that I enjoyed helping people live healthier lives—both mentally and physically. Now I saw a much greater purpose to my yoga philosophy training. It’s what saved me while Rett was sick and dying. It taught me to see this time of suffering as a purposeful moment in my life, and I had the choice to let it bring me down or bring about a positive transition. I knew I wanted to share the tools that helped me stay strong and focused during this harrowing experience. And with that desire, Jim and I created a foundation in our son’s honor, Rett’s Roost.

Rett’s Roost is a new non-profit organization that supports families that have heard those heart-dropping, stomach-wrenching words, “Your child has cancer.” Or even worse, “There is nothing else we can do for your child.” Our mission is to provide a sanctuary (in the form of retreats) for entire families to live, love, and heal together. We offer therapeutic ways of healing with yoga, art, music, writing, and games that build confidence and acceptance and promote lovingkindness and mindfulness. Our first two retreats were for families in the post-treatment, recovery phase—meaning their children had stable or no evidence of disease. Our first bereavement retreat—for families that have lost a child like us—is coming in December.

It’s been nearly eight months since Rett passed and only three months since Rett’s Roost became my daily “work.” I’m proud and empowered by what Rett’s Roost is becoming. While it feels like a source of healing for me, sometimes I wonder if I’m avoiding my grief. But I simply cannot ignore the super-charged angelic force behind it all—our son Everett. He came into this life to create compassion and abundance for those who need it most. And I thank him daily for his heaven-sent support and guidance. As much as I’d prefer to have him here with us, I’m glad to be doing work that has true meaning and value. I often ask myself upon waking each morning, “What can I fill the emptiness in my heart with today?” Thankfully, with all the beautiful cancer families and generous supporters we’ve met, my heart is overflowing.