Christmas, birthdays and the tooth fairy are my favorite days of the year.  For all three,  I love the idea of creating a clandestine magical moment for my kids; a moment in time when my kids feel their importance in the world utterly and completely; that anything is possible. ” Lasso the moon, Mary…,” absolutely…   As Santa and the tooth fairy’s right hand man, I have basked in the glow of this magic, secretly admiring the midnight lighting on the tree surrounded by Santa’s generosity or the extra flurry of  gold pixie dust that still lingers on my child’s pillow and hair.  At times even, I get so caught up in the magic, that I find my own willing suspension of disbelief take over.   Taking one final look at Santa’s work Christmas Eve,  I pinch myself at the glorious magic in the room.

Unfortunately,  as hard as I’ve tried all these years to master this holiday sleight of hand, one other constant has also been true .  And it did not fit with my pretty illusion.  Leta is so medically fragile and would always catch pneumonia, RSV, or the flu in the midst of my magical performance.  And this reality made the Hallmark holiday moments challenging. Her undiagnosed special needs and her severe pulmonary and respiratory distress were always more acute in the winter months.  Instead of a Laura Ingalls Wilder, “Little House on the Prairie” moment we were always more Charles Dicken’s, “A Christmas Carol.”  Leta our stand in for Tiny Tim with her walker and long oxygen tubes tethered to her nose.  Some years she would be too sick to even come downstairs, or worse she would be trapped on the Pulmonary Unit of Childrens Hospital.

Looking back on all these holidays, I stubbornly never wanted to give up the illusion of the magic.  Down to the happy holiday card; our yearly family PR, that I  sent out for 18 years despite how bad things were.  I have to laugh now because I think I did a hell of a good job hiding the backstory.   One year I put all 4 kids in the window of my Suburban truck, yanked the oxygen off Leta and said, “Quick, SMILE!.”  The only problem was that the camera never lies and Leta was completely bald on the left side of her head.  She had been going through a phase of pulling all her hair out when she got mad or frustrated .   This particular year she had been pulling it out in clumps for days, to the point that I was worried it might never grow back.  Doctors call this behavior in special needs kids, “tick- a- tilla- mania.”   But I found a quick and easy solution.  I asked Jack to hold Leta in such a way so that his left hand would gently cover Leta’s bald spot. Problem solved.  With enough snaps taken, I managed to get one “perfect” picture of my 4 adorable  kids smiling.

Another Christmas card, was even more convincing.  My friend Annie, a professional photographer, took  a photo of our entire family in Maine.  We did the whole family wearing white thing on the beach that year.  We even included our two perfect golden retrievers, one a new puppy  named Maya.   Annie took a gorgeous picture of  us looking like the  “all American family”.  There were just two problems with our public relations stint that year.   Unbenknowst to the kids, I had  already asked Rick for a divorce a month earlier, and Leta had been throwing up violently for 2 days.  She was so dehydrated and sick that moments after our photo-shoot was finished, we rushed Leta to the Barbara Bush Children’s Hopsital where she spent the next week being evaluated  in the Nephrology unit, eventually diagnosed with severe kidney failure.  My kids cherish that last family picture of all us all together, but I knew, even while it was being taken, how completely misrepresentative it was of our life.  Pictures can tell a thousand words, or they can do a good job of hiding the truth.

One winter Leta came down with pneumonia and  was stuck at CHOP for Christmas Day. I hated that she always seemed to  get sick during the holidays, so I came up with a plan.  I desperately wanted one normal Christmas moment with my family.  So while visiting Leta at the hospital,  I told the charge nurse that I was  going to take her for a walk around the hospital to show her  the Christmas lights.  Instead, I walked Leta off the 5th floor Pulmonary unit, through the main lobby of CHOP, past the Christmas lights, down the  elevator  to the parking garage into my car.  I put Leta in her car seat, hopped in the drivers seat,  and made a speedy get-away.  I can not lie that I had a holiday rush of adrenaline as I stole my child from the hospital Christmas Day.  She still had her IV in her arm ,was hooked up to her oxygen, and we just left.  Leta’s giant smile on her face and twinkle in her eye  convinced me that she was in on my devious escape plan, a willing hostage.   She and I have always made a great Thelma and Louise team.  I brought her home that day,  quickly changing her out of her hospital gown and into her striped Hannah Anderson Christmas pajamas, so she would match Jack and baby Lucy for the Christmas pictures. We opened presents,  ate our Christmas lunch and two hours later , were  back at the  hospital.  If anyone had asked, we had just gone for a really long walk. And yes, if Leta could speak she would have told everyone that the Christmas lights were spectacular.

I have to laugh at how hard I tried in my thirties to make things seem perfect when life was so far from it.  And really isn’t the best lesson we can teach kids, just the opposite message?  Life is messy and rarely perfect, but we need to celebrate every moment despite ourselves.

Merry Christmas.

xo