There’s the ebb and the flow
the good and the bad
there’s love and there’s loss
there’s manic and mad
There’s calm and there’s stormy
Elated and sad
There are so many feelings
With all that our life brings
Some days I want to curl up and cry
Other moments I feel I have wings and can fly
We are welcoming new life
Or saying goodbye
We share tribulations, that life brings; you and I
Our happys may not always cheer at the same time
So even if you say so, all may not be fine
My heart surely will always bleed for thine
And I’ll take care of all hearts
like I take care of mine
It has been the time of Christmas and if you know anything about our last holiday then you are privy to the why I needed to soak this one in. I did it too. I was a sponge. I sopped up all the sights, smells and feels that were thrown my way. The ones I missed last year. The ones that I love so much more now. I was as peaceful as I have ever been with all the Christmas’ing going on around me. I felt an air of easiness as I breezed through even the most tedious of tasks. It was a real live dream. I have locked that memory up tight in a safe. It is tucked away securely, in the back of my medulla, for a rainy day that is not welcome but yet must surely come.
Now, however, it is time to check another good feely out of my mental library. One I’ve been eager to write about and yet too distracted to give proper attention to. I am here now though. I am wearing my smock, my beret and I have my assortment of water colors. I am ready to paint you a most beautiful birthday picture and I am just as giddy to be reliving it myself.
It was just a month ago that the festivities were in full swing for Judah’s first birthday; yet it seems I’ve lived a thousand lives since then. I allowed myself to feel every emotion and with each one came soul searching and resolution. I also just did the same about almost losing my baby last Christmas. All of the reflection and gratitude, all the memories and relived heartache made the journey grand. I feel like I’ve been in Wonderland for forever and have returned to a white rabbit telling me it’s only been 30 days.
So 30 days ago, in a semi fluid motion, I threw Judah the greatest of soiree’s. I chose a Mickey Mouse theme because he’s been known to dabble in a few episodes now and then. Also, because Pinterest’s DIY’s were readily available and doable. AND littles like Judah gravitate to red white and black contrast (that’s how I sold it to myself…. mostly it was about the Pinterest thing.) Anyway, as I gleefully leapt over that hurdle I knew I wanted something else. I knew I wanted his party to be monumental. I wanted it to overshadow any sadness of his birth and put into action all the love that had grown with us over the last 365 days. I threw party etiquette in the trash and did it my way. I wanted to pile up meaning into this birthday heap. I moved it from our house to an establishment that could embrace all the people who held our hands. The ones that held onto hope. The people who immediately fell in love with baby Judah and hugged us. The ones that cooked for us and took care of our hearts with such meticulous mindfulness. That’s who I wanted at the fete….And, actually, honestly, (to new Judah mommy me: unbelievably,) there is no way I could invite ALL the people who did these things…We would’ve needed a grand ballroom to accomplish that( to those of you who I couldn’t invite: who had our back and glorified our Judah, I know what you did, I hold your warmth with immense appreciation every time I see you, and even when I don’t) THIS party was as much for all these people as it was for Judah….and during the countless times I practiced my short little speech and recorded it and replayed it over and over and over (right Bobby?) that is the point I wanted made clear. We had a challenging year and there were so many who lifted us up. I needed them all to know that this day was happy in part because of their care. That was important to me. And the celebration was all that it was supposed to be. There was a sea of grins. There were hugs. There was my token slideshow that I promised I wouldn’t cry at, because I watched it a thousand times before (but did anyway.) There were people who drove hours to be there and ones who ditched their own parties early to be at ours. Kids got messy and sweaty and snuck frosting, as adults clanked glasses in Judah’s name. After a few beverages myself, we left swirling as we soaked in all of the adoration. We continued the festivities in the warmth of our new home as we led our dearest on a tour of our sanctuary… Honestly, the significance of the whole day got to me a bit, and after the kids were tucked in , my beautiful memory became blurry and sleepy.
We didn’t miss a beat the next morning as Bobby and I sipped well needed coffee and commemorated. We relished the opening of Judah’s gifts as I transcribed the long list of people to thank. It was a cozy little Sunday as we prepared for his actual birthday.
Monday, November 30, 2015. One year to the day from my game changer. The day made me smile, it made me shake and I felt a little sorry for the me I was a year before….but there was no time for that. It was time to douse my one year old with loving kisses before I reluctantly headed back to work. The minutes at work were hours and I couldn’t wait to break free. I had flip flopping monarchs dancing in my belly as I waited for Bobby and Judah to pull into the parking lot. It was happening, my dream was coming true. When Bobby and Judah finally arrived we all piled into one car and we were off. A good friend made it happen. She made it possible for us to go back to the room where Judah was born. The room that held so much anguish for me. I went in hot, eager to erase the recollection that brought so much devastation . I wanted this new good memory to trump and replace the hopelessness, fear, and pain that tattered my heart….but when my dear friend Deb greeted us all smiles and led us in the doom room, something changed for me. I didn’t want to erase anymore. I didn’t want to pretend it never happened. I wanted to add to my memory bank… enhance, enhance, enhance. There were so many places that I cried when Judah was new. Places that caught my tears. All of those places, however, also witnessed bliss. This hospital room didn’t yet and we were going to change all that. I no longer wished to negate my heartbreak. Everything that Bobby and I felt in that room had a role in who we are now. How can you throw that away? Joy without pain can only be so sweet. Well, we knew pain alright and now not only do we know pure joy, we’re related to it; we freaking created it.
The nurse that delivered Judah popped by and we recounted the details of that day. A doctor stopped to visit and swoon over Judah. The consensus was that these medical professionals who were now friends wanted more of this. Babies that they helped give life to are rarely back in their sights and they loved it!! So, there was no concern about Down syndrome, these guys were just psyched to see one of their successes! After lots of ogling and sweet, genuine, adoration they gave Bobby, Judah and I a moment…and Deb gave us a letter. We laid on that hospital bed, us three as I repeated “I love you” at least a hundred times in Judah’s ear. Then we read the letter and tears poured. It’s personal and some thing that I want just for us…but Deb’s writing is more beautiful than mine can ever try to be and so with her permission, I leave you with this little slice:
Judah, true to his legacy of JOY that he would soon create, arrived in this world one year ago today, without prejudgment, without a label, engulfed in love and full of potential….he arrived just the same as any other beautiful blessing. I hope his birth story serves as a metaphor for each milestone he reaches…with no need for re-dos…..
No redos indeed. And if there is anything for anyone to take away from our special journey may it be that there should be: no regrets, no redos no guilt. We are exactly who we were meant to be and everyone has a gift to give to us if we are willing to accept it. My gift happens to have taught me about friendship, patience and more about love than I ever knew my heart could hold. We truly are the lucky few. I can’t wait to unwrap all of the gifts that Judah has to give us throughout his most beautiful existence!
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…
admitted
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.
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.
Finding The Joy 