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Posted Oct 07 2010 6:43am
I have neglected this blog lately and I realized this morning that my neglect of writing is the sole reason I am feeling so desperate and overwhelmed right now. I haven't allowed myself to stop for one second, take a breath, and actually process what is going on in the world around me for fear of breaking down in to a puddle of grief-stricken tears that I fear would wash away and never be built back up in to the body of persisting strength I have worked so hard to establish. 

There is plenty to feel overwhelmed over... a quick catch-up on my son's CaringBridge page will give you a glimpse of that, and it is only one of the many overwhelming factors of my. Count that in to my being mere months away from obtaining my bachelors in psychology and the work involved, eager to pursue the masters or doctorate route; being two months in to this new city establishment; my husband being in a football field sized can hundreds of feet under the Atlantic Ocean top for the next month; striving to ensure stability for my children as they adjust to changes and we address some "issues" from the past that are incomprehensible to their little minds...and all the other daily adventures that present themselves at the most inopportune times possible, I'm buried!

So, back to blogging I come... it helps sort my thoughts and allows the "me" time I need. Despite the frustration I briefly felt with the stronghold that hydranencephaly has had on my entire family, who cares... it is a huge deciding factor in everything we choose, not the only but a large one, but we have to have some positive and negative factors to help us decide and why not that be our ultimate factor, with its all encompassing nature? 

That said, I'm eternally grateful for the connections I have made in our new city thus far... another, more positive, aspect of overwhelming. Overwhelming support, guidance, assistance, luck in finding sympathetic ears and non-judgmental/discriminatory persons to share the days with who are not around and offering of themselves for shear pity of my circumstances. It's not all bad, and I'm glad that some can recognize that without telling me repeatedly that they're not sure how I do it... or asking how I get out of bed every day. I'm able to escape the stronghold that my son's label has had on our lives in some aspects at least... I get to be a person, not just the mom to the "different" little boy in the stroller with glasses and the "funny-looking" head, or Bella and Ady's mommy, or Harper's wife... I have an identity again :)

However, I'm still living in reality~or perhaps I should say facing this fear... and this is my reality, my fear. Although it's not written in my own words, if I had the words to express and the ability to process it, this is how I hope it would sound:

What It’s Really Like When Your Child is Terminally Ill
Submitted by Lisa Buell, a writer, activist, mother of three and parent of two. She works with Children’s Hospice and Palliative Care Coalition, Partnership for Parents , as a parent advocate bringing a parent’s perspective to the development of palliative care programs and policies. A published author, Lisa is writing her first book, entitled “Call Button,” a collection of essays about the continuation of life in the face of treatment, navigating the waters of grief, celebrating communities and the clinicians who care. To contact Lisa email her at

How could death possibly happen to a child? We all enter into an unspoken contract that our children will outlive us. It’s what gives us the courage to become parents in the first place. When that assumption is suddenly thrown into question because of a child’s illness, we find ourselves looking for reasons hidden in the unreasonable. We seek for clues to explain why this tragedy is happening to this particular set of parents, to gain understanding and to create distance as well.

As parents of a dying child, we didn’t want to see ourselves as victims of fate, so we thought on some level that we must have asked for this to happen. Perhaps, we invited the cancer in and supported its existence on some sort of esoteric spiritual level. For if that were true, there would still be the possibility of changing the course of events. So the fight began to prove, disprove and cleanse our selves.

We fell down the rabbit hole. We did everything the doctors told us and during breaks in traditional treatment we sought alternatives like massage, energy work, hypnotherapy and psychic healing. I took special herbs to boost my immune systems, hoping the magic would travel through my breast milk into my five-and-a-half-month-old daughter Madison.

We went line-by-line down the lists of ingredients in all our foods, cutting out chemicals, sugar and dairy. We bathed ourselves in essential oils that promised well-being. We changed our laundry detergent. I stopped wearing perfume. We prayed in public, with loved ones who wanted to bathe us in light. We read from a script, “Please Lord, thank you Lord, thank you.” We bought crystals, burned sage, practiced rituals and made deals with God. We did everything we could think of to put an invisible force field around ourselves and our child, fighting something we couldn’t see.

We found ourselves in back alleys where the lights were low and the “practitioners” only took cash, where people talked in whispers and we saw other faces like ours: eyes wide, mouths shut to muffle the screams of terror that welled up inside of us day after day.

Please help us. We were willing to do whatever it took as long as it didn’t cause more harm. Energy works, qigong, calostrum from cows, massage therapy, acupuncture. We logged hundreds of hours online looking for a cure. We funneled all of our extra money into these types of supportive therapies, many of which didn’t take insurance. Our friends put on fundraisers so we could keep roofs over our heads clothes on our bodies and gas in the car. This is the life that none of us talk about, but it is the reality for many parents who are caring for a seriously ill child.

In the midst of all the desperation, there beats within us the determination to give our children the best life possible, to make every moment count, to shield our children from the dark so they can soak in the light. We plaster smiles on our faces during the day; our hearts fill with gratitude for the incredible gifts our children have given just by choosing to come into our lives. In the night, when the house is quiet and everyone is asleep, we lie awake watching the rise and fall of our children’s chests, wishing that God would take us instead.

If the doctors have the courage to speak the unspeakable and tell us what no parent ever wants to hear, they give us the gift of quality time with our children. We hope that the web of support they have given us through treatment doesn’t end with this new phase of life.

For those of us who choose to take our children home from the hospital when western medicine has failed, we are not taking them home to die…we are taking them home to live. We bring them home to live and we protect them with the fierceness and strength of Mama Bears, 0ur hearts open wide, as we hold all the hope of the universe inside. We take them to the snow, the zoo, Disneyland. We try and compress a lifetime of happiness into the little time we have left.

Each activity, every moment is permanently etched into our consciousness. They continue to grow as we celebrate every milestone with a lump in our throat. We take a gazillion pictures, compile piles of video tapes of our children’s everyday activities; what great dancing, oooh, you love your puppy, come to mommy, open the door-who is it?

We decide if the time comes for our children to die that we will not call an ambulance, their last days will not be spent in the hospital hooked up to tubes and ventilators. We will be home, with our friends and family around us. When time runs out, we call Hospice and hope they know how to care for children. When our children’s breath becomes labored, we bring in the oxygen, pain medication and relatives. We burn our sage, say our prayers, sing quietly in our children’s ear and tell them, “you can go, we will be okay, we love you.” In our hearts we know it’s not true, we know that we will never be okay again.

We want to crawl inside our daughter, make her heartbeat again, and fill her lungs with air. When our children take their last breaths we don’t view their deaths as inevitable. Instead, we feel shock and disbelief. There is a big difference between understanding and believing. How could this possibly have happened?

We wake up dead the next morning and for many mornings after that. We comfort our friends and relatives with the idea that our children live on inside our hearts. This is true, but then there is another part of us that continues to search for them. We go from room to room, sure that this time they will be there. We search for them at parks, on the playground, at the beach, just a quick glance around- maybe this time. We aren’t longing for any child, just our own.

Our coping skills run the spectrum. We eat too much but remain hungry; we sleep too long but never feel rested; we become addicted to sex because it’s the only time we can take a full breath; or we don’t let ourselves experience pleasure at all. We spend without thinking, look without seeing, and try our best to find meaning in our lives again.

We read books about the stages of grief and try to classify our experience, so we can put our grief into a container instead of having it ooze out into every part of our lives. We want to have a label for what we are going through to help us make sense of our lives. The idea that we might feel this way forever is too much to bear, yet we don’t believe it will ever get better because our children are gone and they’re not coming back.

At some point, we come to an understanding within ourselves that in fact it is forever and the pain starts to shift. Our hearts were stretched with love for our children and it’s the need to have them full again that drives us to engage with life, unless we give up, turn away and go back to waking up dead.

If we’re lucky, our friends come together to love and support us, sit with us in the uncomfortable. They hold our gaze, the pain in our eyes doesn’t cut them and they help pull us up from the pit of despair. Our friends come when we call and keep calling us even when we don’t return theirs. They speak our children’s names, share stories and continue to remember them. Through their emotional generosity, they continue to breath life into our children and get to walk around the room together again.

For me, the turning point came when I realized that my relationship with my child hadn’t ended; I would always be Maddy’s mom. Throughout the last ten years since Maddy’s death, I am compelled to do things to honor her: make a quilt out of her clothing, a photo essay of our story to raise awareness about childhood cancer and celebrate community.

The art program that was established in Maddy’s honor continues to thrive. I talk with clinicians, always giving them the parents’ perspective. I’ve worked with parents who write books, make music, build bathrooms that their children would love, jump out of airplanes, climb mountains, run marathons, fund programs and start non-profits that help children.

We do these things to keep our children alive. As the programs grow, as other children and families benefit from our work, we feel a strange satisfaction that we have found a way to continue parenting our children. We find meaning in the work we do and are happy that other families benefit from our work. But really, first and foremost the work is the vehicle to continue our relationship with our children. When it’s two o’clock in the morning and we are finishing up yet another inspired project, we can breathe a sigh of relief and know that we are not manic, just parenting. And through it all, we are slowly, beginning to heal.

But the healing part, how and when and could it even be possible? I needed that to start months ago, and just when it may have come over the initial blow of, "your child will not survive," it is re-implanted with every bout of illness or even funny-sounding snort or funny-looking eye flitter. Contacts with new families enduring the earliest stages of diagnosis, whether at birth or in utero, reignites the pain and emotions from the beginning of our own journey. But, strength prevails... nothing less than that and hope, endless love, and optimism can survive. I can't allow it... so, back to blogging in avoidance of overwhelming days filled with emotions of varying varieties. Hope you'll follow and share as I disclose all aspects of our own journey... research, affirmations, inspirations, empowering stories, all encompassing aspects of hydranencephaly comparable to other terminal conditions affecting our littlest loved ones, leaving helpless (despite the effort to grasp some level of helpFUL) feeling parents. 
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