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  • Writer's pictureElizabeth Leon

Meet our Monkey!!!

Updated: Jun 7, 2018

After losing John Paul Raphael to Trisomy 18, we were in uncharted territory. The smallest bit of comfort came in an unexpected furry way.

Trisomy 18
With Ralph and Monkey on BHI

Finding out in August 2017 that we had an 87.7% chance of having a baby with Trisomy 18, a life-limiting condition, opened doors to a whole new world we wished we never knew existed. In addition to so much fear and anxiety and worry about what might or might not happen, there were many practical aspects in front of us that I needed to explore and understand about this most horrifying of experiences: having your baby die.

No one wants to land in this foreign country. No one. But if I had an 87.7% chance of ending up there, I wanted to read the guide book. Try to learn the language. Study some road maps. This would allow me to have some small, small sense of control in a situation where we had none. It took a tiny, tiny bit of terror out of the great unknowns that lay before us.

With a tender, trembling heart I took to the internet and entered the world of infant loss. It was heart-breaking. I wept as I read story after story of grieving mothers and fathers. I poured over the Trisomy 18 family page and paid close attention to how long each baby lived – seconds, days, weeks, the lucky ones who had more than that, the unlucky ones who lost their child before birth. I read about baby coffins and realized that most baby caskets are more like glorified to-go containers. (more on that later!) It was all devastating, but I felt empowered to learn about beautiful and meaningful ways to love and welcome my sweet baby who will maybe only be here for a brief time, or may even be born still.

One of the things I wondered about the most, that no one could tell me, was what would it feel like for me. I knew so many phrases from my research: earth-shattering, heart-breaking, soul-wrenching, life-altering, giant hole in my heart, never be the same… (I have found all of these to be true.) But when the guillotine falls in my life and my heart is cut out, is there anything at all that can help me????? Here we are 5 months out and I can say from my deeply personal experience: No. Not really. Not in any deep and profound way. But there have been things that brought some measure of comfort in smaller ways and made the intense burning and longing for my baby just the slightest, teeniest bit easier.

This is where our monkey comes in. Monkey has the softest brown fur and weighs precisely 4 pounds and 1 ounce, the exact weight of our sweet John Paul Raphael. Monkey is also almost exactly the same length as our sweet baby and therefore fits perfectly in the nightgown that John Paul Raphael wore for much of his brief life. We brought Monkey home the week after we buried John Paul Raphael when my arms burned and ached the most in their emptiness. He is an incredible comfort to hold; his head fits in my palm in the exact way John Paul Raphael’s did. The small heft of his body fills the same pressure points in my arms and on my chest as my baby’s did. We even wrap him in blue blankie sometimes and spray him with the Italian sandalwood cologne so he will really help us feel closer to our little one.

I am a little shy about monkey. If you have not been in my shoes, I can imagine this could sound more than a little strange. We have several children that think so!!! But Monkey is a gift to Ralph and me. It brings such consolation to hold him. I sleep with him curled up next to me in that cozy night-nursing position that is so delicious with a newborn. He fills about .01% of the emptiness that John Paul Raphael left in our lives, but when every breath hurts, a bereaved mommy will take what she can get.

I first read about this idea of weighted comfort animals during my forays online into the world of infant loss. Several families had stories of comfort bears ordered from a company called “Molly Bears” ( and I watched videos of these weeping parents sharing the impact of this bear made to weigh the same as their dear, lost baby. The idea of a weighted toy or blanket emerged from research primarily based in autism and other sensory conditions. The weighted blanket or animal provides a calming effect based on deep pressure therapy and is shown to reduce anxiety and increase comfort and security. These are all beneficial to newly bereaved parents, plus you have the perfect weight of your beloved baby in your arms. And your body remembers. This is priceless. I knew I would want one if it all came down to that. I filed the website away in my brain and we continued along our path, ready to welcome the life of our sweet baby in whatever way God allowed.

In those blurry days after John Paul Raphael's funeral, I pulled up the Molly Bears website and started looking at bears. I was very disappointed to find out it took months and months to receive a personalized bear, but I also realized I didn’t really want a bear. After John Paul Raphael died, we found ourselves calling him our “little monkey”. I needed a monkey. I was grateful to have a meaningful distraction in these early days and we began to figure out how to make a weighted stuffed monkey. I started by looking at site after site of stuffed monkeys. I figured this would be the easy part. I ordered a brown monkey that said it measured 15 inches, thinking this would do. Next, I watched several youtube videos on how to make your own weighted animal, including what kind of filling pellets work best and how to open and close up the seams. Ralph and I shopped for 4 pounds of plastic beads and a seam ripper while we waited for the monkey to be delivered. After monkey #1 arrived, I compared his size to the 4 bags of pellets. Hmmm… Apparently “15 inches” was from top of the head to tip of the tail and I doubted this was going to work, but we gave it our best try. We headed to Wegmans to begin our operation, needing to make use of the digital produce scale for an accurate measurement. We sat at a table in the coffee shop and I only cried a little as we managed to open the seams of the monkey, pull out most of his stuffing, and cram him full of heavy beads. Cram as we may, we could only get that monkey to weigh 1 lb 6 ounces. My godmother, an excellent seamstress, was in town that weekend so we headed her way with our monkey to close him up. He was adorable and very sweet to hold, but he was definitely not John Paul Raphael. We gave him to Clare and went back to the internet.

I found a wonderful company called Jellycat that makes luxurious stuffed friends. They carried monkeys that came in medium, large, huge, and really big!!! Not wanting to make the same mistake, I ordered the huge and the really big, hoping one of them would work. We restocked our pellet supply and waited for Amazon. When the packages arrived, we enjoyed a good laugh!!! The “huge” monkey was about the size of a small bulldog and the “really big” took up half of Nathan, our 13 year old!!! Take 3. We returned them both and bought the “large”. It was perfect. We headed back to Wegmans with our supplies and started over with the seam ripper. We pulled out as much fluff as we could and used a small cup as a funnel to fill the monkey with beads as full as possible. However, even stuffed as full as we could make him, he still only weighed 3 pounds. I was starting to lose heart.

Keep in mind that everything about this was emotional and nothing about it was rational, AND I was at Wegmans. In my magical thinking of grief, I could not possibly survive all this without this monkey being exactly perfect. Ralph came to the rescue and suggested a trip to Dick’s sporting goods. While I stayed in the car holding the full-to-overflowing-not-yet-sewn-up monkey, he went in to hunt for a solution. He returned just a few minutes later with the perfect answer – giant metal fishing lures!!! We headed back to Wegmans and removed enough pellets to make room for 6 6-ounce fishing lures. We had to leave Monkey on the produce scale at the end and add beads slowly, but eventually we did it!! Success!!! My so-patient doctor husband fished out his needle and thread and carefully finished the operation. When Monkey was put back together, Ralph gently placed all furry 4lbs and 1 ounce of him into my arms.

Unless you have been on this agonizing journey, there is no way to describe the solace of this moment. Pregnancy is meant to end with a baby in your arms. Every hormone surging through my body on this day, Febraury 2nd – John Paul Raphael’s due date and 29 days after I gave birth, 28 days since he died, and 23 days since I held my still baby – every hormone and my squishy tummy and leaking breasts, every instinct and drive in this post-partum mother is to hold my baby. It is primitive and primal. And in the absence of that baby, in the giant vacancy left by John Paul Raphael’s death, I had a profound disorientation in my mind and body, as if the very planet had tilted off its axis. I thought, in that micro-moment before the monkey rested in my arms, of my joy in returning to the funeral home 4 days after John Paul Raphael’s death. My Christmas-morning excitement at having my baby in my arms again-- fueled by this primal, instinctive, desperate yearning that just wants to be filled. There is a desperation in a bereaved mother that makes me think of an old, wrinkled and hunched woman still searching dark, damp alleys after decades looking for her lost little one.

With the monkey snug against my chest, I cried and cried. For the briefest of mystical moments, I could pretend, I could will myself to believe that all was right with the world again. For one miniscule breath, we could be whole, John Paul Raphael and I. Later at home, we dressed him in the little nightgown that sweet baby wore and placed him on our bed. He lies there still as I write this. Often when I sit and read or journal, I tuck him on my lap. When I am sad and longing, I hug him to my chest. Each night as I sleep, I still pull him and blue blankie to my heart. Like a child with a security blanket, I don’t expect to need him this urgently forever, but for now he is a gift to my broken mommy heart. If you are with us in our home and I forget to offer, don’t hesitate to ask to meet our monkey! When my father was here some weeks after Monkey arrived, I brought Monkey down to share and explain. I can still see the look on my dad’s face when he picked Monkey up. He could feel him, I could just tell. He could feel his littlest grandson in that brown furry body. I saw the way he closed his eyes and held his breath, – remembering. A sacred longing flashing across his face.

John Paul Raphael is 5 months gone today. I will hold Monkey a little tighter tonight as I remember too. Thank you, God, for our beautiful baby.

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