The Words That Haunted Me Are Now Sweet Memories

The nurse uttered words no mother should ever hear. Her words haunted me – for a long time. Until The Patchwork Bear came into our life.

(I received a memory bear from The Patchwork Bear in return for my honest review. This is 100% my opinion.)

I keep rubbing my hands over the brown fuzzy bear appliqué on the old blue romper that once belonged to Jordan, our now 8 year old son. I am immediately brought back to a time before I was the mom I am today, before I knew the true value of life, love and patience.

I look at the pile of well-washed baby clothes that now look more like rags than adorable infant gowns. The memories from November 28, 2008 rush over me.

Her name was Jenny. Her glasses were painfully outdated, but matched her messy ponytail and stained scrubs. Apparently, my memory of her isn’t fond, or else I would have remembered her as a warm and caring nurse.

She walked into to Jordan’s room, as we were getting settled for what would be an 8-day long stay in the Pediatric Intensive Care Unit (“PICU”).

The Haunting Words:

Jordan had just spit up on his adorable Gymboree footed PJs, the blue and brown ones with puppies. Ironically enough, he wore the outfit HOME from the hospital – after he was born… and today, two days later, he wore it to the emergency room when he was admitted to be treated for viral meningitis.

I was storing my breast pump in a corner of the room, when she walked in and startled me. Maybe it was her words more than her presence that made me jump. “Didn’t you bring another outfit for your baby? IT IS ONLY DYING BABIES THAT ARE DRESSED IN DIAPERS ALONE! Your baby isn’t dying!”

I turned around to see who had the balls to walk into our room and talk so casually about babies dying. She smiled and continued to talk (without skipping a beat). She explained that doctors and nurses need immediate access to the little ones who are really sick, so clothes is simply not practical.

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Jordan, however, had stable vitals and was “just there” to be treated with a special cocktail of medications until his infection numbers normalized. He was not in the danger zone and was therefore afforded the luxury of an outfit.

Fast forward 10 days… his clothing-luck had run out. Jordan was discharged from the PICU, spent two nights at home, only to be rushed back to the same ER. This time fever wasn’t his medical emergency, but rather heart failure.

From Bad to Worse:

In the ER, we were waiting for a helicopter to take us to a university hospital a few hours away. I stood over my beautiful blonde boy in the baby warmer. He was dressed in a light blue knitted hat… and a diaper – nothing else.

Jenny’s misplace, but probably well-meaning words echoed in my brain: “It is only dying babies that are dressed in diapers alone.” Our baby was intubated and his health deteriorating. His lack of clothing was screaming at me, louder than the machines beeping all around us. I was unable to shut out the noise in the room and the sound of Jenny’s voice in my head.

Jordan got settled into the PICU at the larger hospital. He remained intubated and was on medications that gave his body the rest it needed to recover. There I sat, bedside, day in – and day out. Clothing was made impossible by the 24 lines going into various body parts, some of them poking holes in his fine pale skin.

The nurses explained that Jordan needed to rest. Any type of movement caused him great stress, which he expressed by his vital signs dropping dangerously low. For a month, I was unable to hold my baby.

Enough Is Enough: 

On day four of Jordan wearing only a diaper and a light blanket, I had had enough. Jenny’s words continued to play like a broken record in my head and I had to do something to stop it. That morning, I asked the nurse of a pair of scissors. I noticed that she hesitated, but obliged and promptly returned with the requested scissors.

She stayed in the room, probably a little worried about my plans for the scissors. I grabbed three of the t-shirts and rompers we optimistically had brought with us for Jordan to wear. Without hesitation I cut them, one by one, all the way along the back. From the bottom to the neck, one long cut. I also sliced the back of the sleeves open – one by one.

As I was working on my project at the foot of Jordan’s baby warmer, the nurse was making casual conversation. All of a sudden, as I was cutting the last romper, the story of Jenny and her careless words spilled out of me.

Her words, the tears, the snot – it was all just pouring out of me. “It is only dying babies that are dressed in diapers alone!” – I kept repeating the words, over and over.

Picture: Jordan “wearing” one of his onesies, December 2008. 

Mary, the sweet and tender nurse, grabbed the scissors from me – and finished cutting the romper with the fuzzy bear on the back. Without further explanation or words exchanged between us, she took the romper, pulled Jordan’s blanket away and draped the romper over his naked body. She gently tucked the cut sleeves around his arms and stuffed the sides of the outfit around his body.

The room was silent – finally a comforting silence. We both took a step back, looked at Jordan and then hugged, as we both cried. I cried tears of worry, sadness and relief – lots of relief. My baby was no longer telling the world that he was dying. He was simply resting – as per doctor’s orders.

For the next 6 weeks, until the end of January 2009 when Jordan was discharged, once and for all, he continued to “wear” clothes. Never once was my baby only dressed in diapers again.

The Patchwork Bear: 

I wipe away the fresh tears running down my cheeks. All the memories, feelings and raw emotions that are woven through this pile of cut baby outfits catch me by surprise. I need to preserve all these outfits as a way to celebrate Jordan’s strength and victory over his medical nightmare.

I carefully pack the irreplaceable and tattered pieces of clothes, letting them leave our home for the first time since Jordan was discharged. They are sent to the Patchwork Bear, knowing and trusting that they will honor how important these clothes are to our family.

Shipping the box of memories is a surprisingly emotional process for me, but it feels good to know that they will return in a form that I can proudly display.

***Use code “MAMA” for 20% off at The Patchwork Bear***

If you have a collection of concert t-shirts, fraternity shirts, baby outfits, old blankets or your late parents’ clothes stored in your closet, take this opportunity to honor those memories. The Patchwork Bear makes memory bears, quilts and bags – even adorable ornaments.

Their artistic and innovate creations bring new life to your old memories.

***Use code “MAMA” for 20% off at The Patchwork Bear***

The Patchwork Bear Process:

1. Order a box from The Patchwork Bear.
   1. The box comes complete with instructions, in case you wish to help with the creative process. You can direct them to place specific items on every part of the bear.
   2. Or you can do as I did, send your memories and let them use their best judgment and creativity.
2. Complete the order form, be sure to fill in your return address. Verify the information an extra time.
3. Ship the box.
4. Wait… It took approximately 3-4 weeks for our memory bear to come home.
5. Receive your memory creation.
6. Love it!

Imagine giving a memory bear, quilt or ornament to a friend who has suffered a tragic loss. It is an incredible way to honor the loss of a child, spouse or parent. Or simply do as we did, honor and celebrate an important memory in your life or your child’s life.

***Use code “MAMA” for 20% off at The Patchwork Bear***

Jordan often grabs his memory bear and asks for the story of the cut outfits. He wants to know where each body part of the bear comes from and how he looked in the outfits. I thought this memory bear would represent a sad time in our lives, but instead it celebrates Jordan’s triumph and incredible fight.

Have you ever found yourself at a loss for words when your friend with a special needs child is facing yet another hospitalization? This post is full of empathetic things to say.