Christmas day arrived and Santa gave Leta her own i-Pad. Santa knew that not only would Leta enjoy watching videos on the i-Pad, but the technology would help Mommy put Leta to sleep at night and perhaps buy Mommy an extra hour of needed REM sleep,from 5am-6am, courtesy of Netflix and You Tube.

And Santa was right! Leta was so absorbed in playing on her i-Pad after Christmas that I was able to read the newspapers, clean the house, write my blog, and peruse the Facebook Newsfeed. BUT that is when I noticed… my FB account had been HACKED! My latest status update, Christmas night, appeared to be a travel article about a Dude Ranch in Wyoming, complete with video. How strange. I also noticed that I had received a few “likes” on my update, one query as to why I felt compelled to post a travel article in the middle of the holidays, and one congratulatory comment that I was on vacation out west.  I quickly deleted all of it.  And then the next day the same thing happened again. But this time a cat video appeared!  I was alerted to “my” posting by my California friend’s comment: “I love the cat video Lainey.. Adorable!” And then before I could get on FB and watch, 3 more cat video comments rolled in…. I deleted everything, embarrassed that these two random postings had occurred. And then I realized….The cyber-hacking was an internal job.    L.E.T.A!

 But how did she manage to hack onto my FB account,twice now? She couldn’t have gotten through on my computer, or my phone…they were both password protected? I went sleuthing. And I quickly found the answer… When Santa gave Leta her own I-pad, the I-pad seamlessly managed to i-Cloud my e-mail, my Facebook, my pictures and my i-Tunes. What planet are we all on that this actually makes sense to anyone now? Leta had it all at her fingertips, even my Amazon account. With just one-click she could order a Nikon camera and have it delivered to our doorstep in under two-days.   So I turned off the FB feature on her I-pad and sent out an apology disclaimer to my FB friends.

I personally hate it when people send out a flurry of random status updates. I like to rely on my friends, certain friends at least, for substance. And here I was my own worst nightmare, getting “likes” for cat videos. And then in response to my apology, I received 16 “likes”, a few understanding comments about my mischevious Leta, and one suggestion that perhaps I should let Leta loose in the kitchen with a Kitchin-Aid Blender and a hot oven. what is that all about?…..at least my friends understand my Leta chaos and are forgiving… My FB street cred was still intact.

But a few more days went by, and the hacker struck again! I received a phone call from an apologetic friend.  The conversation unfolding like this:  “Lainey, I saw your recent post on cyber-bullying and I am so sorry that my son wrote those things on your daughters Instagram wall.”
“You must be mistaken, I replied,  What posting?”  And she said, “The one you posted New Year’s Eve.  I’m pretty sure it was you.” I assured her that I had NOT posted anything New Year’s Eve, not even a cheerful Happy New Year posting.   We were both confused for a moment, and she went on to apologize for her son’s cyber-insensitivity. But then I told her that it was probably my special needs daughter, Leta, who had already hacked my account twice this week. She laughed, I laughed. But did she believe me? What if she thought I was trying to send a veiled passive-aggressive message to her about her son’s cyber-bullying??   I hung up the phone, jumped on my FB account and there it was:  Another article complete with video : ” A Super Simple Set of Steps to Stop Cyber-bullying from happening to your kid.” How did Leta do it this time!!!  I was mortified and quickly hit the delete button. But not before two more friends had “liked” the posting and re-shared it.

I called my friend back to assure her that I really did not post this article and I had no bad feelings…I wanted her to understand the irony. Laugh, laugh, laugh.

But to myself I was thinking. “That 3 foot tall cyber-devil. LETA!!” ……It made no sense that she could get onto Facebook again, now that I had taken it off her I-pad.  

 And then the hacker hit one last time……a political posting, no less:  Lech Walesa decrying that ObamaCare is doomed. Oh God! Now everyone thinks I’m a radical right wing nut-job….This time my friend Geoff, who had been delightfully following all these postings and egging Leta on somehow by liking each of them, brought this one to my attention with the comment, “Now, Leta is getting political on us?” I went to my homepage to delete. But it had been up for an hour…no surprise that no one but Geoff had made a single like or comment. My friends are all Democrats, after all.

dangerous with computers but devilishly cute!

Even though these instances are embarrassing and hard to explain to the uninitiated in Leta world, I am secretly proud of my daughter’s blooming techno-savvy ways. She can not read or write, but clearly the computer makes sense to her and she is able to navigate it more proficiently than most. And it does makes me continue to wonder, what else can she do? Until my next posting, I wish you a Happy 2014 filled with more love and less chaos, unless of course you would like to have some of mine. xo

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