Last year at this time we were snuggling our cozy November baby. We were loving on his health despite him being born eighteen days early . We were starting to swallow his staggering Down syndrome diagnosis and wrap our head around the package of a new future. It was all going as well as can be expected when our newest addition seemed grey?? So, in the coldest of colds and the deepest of snow, I rushed him to his pediatrician who in turn rushed him to the hospital in an ambulance. There we remained for thirteen days. One day after his due date, through Christmas, through his one month birthday, right up until New Years Eve. We endured anguish as our baby boy became a teeny pin cushion, was diagnosed  with RSV, and  put on life support. Here’s what I will miss about that hospital stay this Christmas…

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10. The Food.… Yes I said the food. Midnight milkshakes became a comfort when the unknown was glaring. It was a chance to desert those four walls and our baby for just a moment.  Instead we would dash to the dining hall and decide what snack to eat. Relief came in the form of deliberating over something that just didn’t matter.

9. The Abandonment of Christmas Commitments….I was juggling the hustle and bustle with a new baby and my “new normal” capsule was stuck in my throat.  I was flailing.   The hospital trip gave me an out. I said bah humbug to Christmas cards, cookie cutting and perfectly wrapped presents. These values still stick to me like gum drops on gingerbread houses. Christmas “appearing” as perfection is no longer on my list of things to do…but letting go of stress is.  My goodness it is freeing.

8. Holiday Spirit….The hospital  takes on a life like the North Pole in spite of (or because of) what is happening inside. Snowman scrubs and Santa hats visited our room alongside holiday balloons and a giant stuffed dog with a cozy red scarf.  There was a workshop of sorts and we were persuaded to pick out a ridiculous amount of toys for our boys.  Then volunteer elves begged to wrap them. It was electric. It was as if the people working there knew lives depended on spirit as much as medicine flowing through IV’s.

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7. The Love of the Little Things….. Never once did I miss a party, card or the gifts that fill St. Nick’s sleigh. Instead they were replaced with delicious goodies like: friendly faces, crying hugs, a hot cup of real coffee, a smile, a hand to hold and a prayer to share. Those things mattered. They fueled us.

6. Meals….During the holidays we all have our family go-to’s. Mine happens to be my mom’s chicken soup, served hot with smells swirling before the roast beef arrives. There are others from both my family and my husbands. On Christmas you just can’t get to them all… because of time or  because your pants don’t fit…but in the hospital there they were in the fridge just waiting for us. They screamed home, normalcy and comfort.   With a zap of the microwave and for just a moment,  everything seemed right in the world.

5. A United Front…..Celebrations celebrated without us. Santa still came Christmas Eve and velvet on littles warmed our loved ones. We missed it… but we were never forgotten. Our friends who are more like family took up a donation at their annual party as they kept us in their prayers. Raffle tickets were bought in our honor and doled out by loved ones who cared. My brother kept it light when he visited me Christmas Eve and my own belly laughed like a bowl full of jelly. My in-laws sat vigil over our tiniest patient so that we could attempt a normal Christmas morning with our 3 year old…and a dear friend sat with my husband and I at the hospital Christmas night. We shared a couple of snuck-in brewskis as we spread giggles over our snug little bubba. I heard the bell ring last Christmas and I again believed in its magic.

4. Miracles in the Making. …Real, gift giving, angels disguised as nurses and doctors worked tirelessly to save my baby’s life.  They spent their holidays with us. Many shared stories of their children with me and were tireless watching over mine.  I’d fall into a restless slumber as they peered over my darling’s crib and wake up to them doing the same.  I was warmly greeted when I awoke and felt something missing when they briefly left to be with their real families.  I have a new, shiny, Christmas tree topping respect for these angels who walk our earth and the miraculous works that they perform.

3. Tender Stolen Moments….during our extended stay at the local ritz PICU my husband and I had a luxury. He was on school break and so neither of us were working. One of us was always home with our 3 year old while the other made camp with our ill infant. This left little time for us to be together. It also created precious fleeting moments when we were. These lingering ,briefs strengthened our bond and  taught us as much about our love for each other as they did about our strength. I would never trade these most personal minutes and wish life allowed us to always take such good care of each other.

 

2. Jesus…We all know the real meaning of Christmas.  We know the story of Mary and Joseph and how there was no room at the Inn. Somehow, Kris Kringle and twinkly lights overshadow the story of a special little baby born in Bethlehem.  However, when’s your child is fighting to survive and you have nothing but time, waiting and faith,  then Jesus becomes all that is important. I discarded the commercialized version of the holiday and was able to spend some real quality time with the Father, Son and The Holy Spirit.  It felt good, and it felt right.  This year I have succumbed to Santa, Rudolph and tiny little elves for my 3 year old. Don’t get me wrong, it feels pretty good too. I just will always gratefully recall that one Christmas I spent in solitude with Emmanuel.
1.  The Gift of all Gifts…. Gifts are tricky. They are tricky to give and to get. More times than not I’ve gotten  something I didn’t  want, couldn’t use, or didn’t need. I’ve also given gifts that were duplicates, didn’t fit,or didn’t matter. So, exhilarating  is what it felt like to get something I really wanted. Something wished for more for than any cabbage  patch, roller skate or easy bake oven. The gift of life. That’s the best present under the tree . So although I may be on the nice list this year, nothing can match last year’s gift and nothing ever will.

 

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