We made it through the first year!  The girls turn one tomorrow, and this leaves me at a loss for words.  Seriously, I want to write about all the emotions this birthday brings, but all I can do is stare out the window.  I guess I don't even know where to begin.
I am so thankful, not only for my girls who teach me something new everyday, but for everyone that has helped keep us afloat.  There is no way I could even mention everyone.  I lay in bed at night and try to narrow it down to 10, but I can't.  So I think maybe I can narrow it down to 20, nope.  We are easily in the hundreds.  Hundreds of people who have babysat, sent gifts, written encouraging messages, given hugs and prayers, traveled to be with us, given us their home, their car, their expertise, their time, their thoughts, their love. Throughout this year I have been amazed at the generosity of people not only family and friends, but complete strangers.  If I had more time I would write thank you's to all of you, hundreds of people.  I would tell you that even though it was just a hug to you it was these exact moments that saved us. The saying that it takes a village to raise a baby has never rang so true.  You are more than a village though.  You are the world.  THANK YOU!

I took a picture of the girls on the 13th of each month, McKinley on the left and Madeline on the right.

Wow, it's been a long time.  Dodgy Internet and fun filled days have kept me off the computer, but I dusted it off today and figured I should give a quick update.
We spent a beautiful and some what relaxing two weeks at our house after we sent the Eaglebrook boys on their way.  My parents and Jim's dad helped us celebrate the beginning of summer, Father's day, my father's retirement, Jim's graduation, the girl's nine month birthday, Crosby finally getting potty trained, and all the good things in life.  Then we moved to our new home at camp.  It really feels like home, complete with good friends downstairs for all the Fays.  Everything has it's place and our routine has been firmly established.  Lather, rinse, repeat...
In an attempt to maintain my level of sanity we have hired a nanny. It is the third best thing that has happened to us this summer.  I spend time at lunch with Jim and lay leisurely on the beach for an hour as often as Mallory is able to be here.  No crying, no diapers, no therapy, no rushing to do anything.
The second best thing to happen to the Fays is day camp.  Crosby has joined the Crew and it is starting to feel like this life is coming full circle.  People I have known since I was 20 are now caring for and reporting to me on the well being of my oldest child.  Camp is magical and I am so excited for my son to experience the magic of this place and these people.
And finally the best, the absolute best!  We poured our time and effort into finding McKinley a therapist on the Cape so that we wouldn't feel that we were choosing summer fun over therapy.  After many phone calls and even acquiring secondary insurance we found one, and the whole experience was terrible.  So after 4 or 5 tear filled Monday and Wednesday mornings we cancelled all future appointments.  I felt lost and defeated.  Almost instantly our friend B.A. took my hand and showed me I was neither lost nor losing.  B.A. has been working with McKinley for two weeks now.  She has given us her time, shared her knowledge, and instilled a new sense of hope.   It is amazing the effect a single persons kindness can have on the life of this family of 5.
The girls are ten months now, time is flying by.  It reminds me of one of Crosby's favorite sayings, "take time to enjoy the view".

A friend of mine gave me a hug on Saturday welcoming me back to campus and she said, "I heard you got some good news."  I thought, clearly she had made a mistake and was congratulating the wrong person.  I must have given her a confused look because she immediately explained that she heard McKinley's troubles were not life threatening.  Huh, I guess we did get good news.  My perception of the past few days was starting to shift.

 Moments later I was given the news of Marina Keegan's death.  Marina was an intelligent, beautiful, talented, charismatic, 22 year old that Jim and I knew from camp.  She graduated Yale days earlier and was on a Memorial Day vacation on Cape Cod.  At the end of her vacation she was to start her dream job in New York City.  Her boyfriend was driving, he swerved and as a result Marina is no longer with us.  I cannot even begin to imagine the grief her family is feeling.  I can think of nothing worse.  Below is a painting Marina did of Jim and I, it is us on a Raftco boat, the night we got engaged.

You can have the "perfect" life and the "perfect" children, and it can be taken from you in a split second.  My hope is that I can embrace this life, focus on the positive, and realize that everyone has a story to tell.  Some stories are sad, some joyous, some obvious, some hidden somewhere inside, and some absolutely unfair.   

Home sweet home.
McKinley responded well to the first medicine we tried and hasn't had a seizure since early Wednesday!  She had to stay in the hospital to be monitored and a spinal tap was scheduled for Thursday.  The spinal was the worst part of the whole hospital stay, thank God it is over. We came home Thursday evening.  Friday morning, after a night of laughter and wine with Jim and my mom, I woke to my sweet McKinley.  She was no longer groggy from the sedation, no more bandages or IV's, and she was able to sleep 11 straight hours with out nurses waking her to take her vital signs.  McKinley and I were back to our regular posts on the carpeted floor doing stretches and playing with familiar toys.  We got OUR life back.

 McKinley looking so little on the big hospital bed

 Madeline and Nana cruising the halls

 Recovering from her spinal tap

Snuggling while she slowly wakes up from sedation

 Madeline and her hospital boyfriend Gabrielle, in the playroom

McKinley's going home giraffe from Nana

The day that McKinley was diagnosed, Jim and I made an appointment to get tattoo's!  I never wanted a tattoo, but after much consideration and a rough day we drove to the tattoo parlor.  Of course they couldn't do it that day, we needed to make an appointment.  So as planned at noon today we packed the car with the girls, and headed to Northampton to get tattoo's.  For three reasons this timing was ironic.  One, I never wanted a tattoo, partially because I thought my parents would be upset with me and now my mom was babysitting as I was getting inked.  Two, the purpose of the tattoo is to be a constant reminder of the love and strength of my beautiful family and it just so happened to be scheduled for the day after we returned from the hospital.  Three,  for the four days prior to today I watched with tears in my eyes as McKinley was stuck with numerous needles and wished I could feel that pain for her and now in a strange way I felt like I was.  Something about all these unusual circumstances together made the timing perfect.

I'm realizing that life is never going to go the way you expect.  I was never going to live in Massachusetts, never going to be the mother of twins, never going to be the mother of a special needs child, and never going to watch helplessly as my 8 month old laid in a hospital bed having seizures.  This wasn't the life I had signed up for, but here I am.  Now sitting in my dark living room with half my family asleep in their cozy beds in the rooms I so carefully decorated, and the other half in metal hospital beds 45 minutes away.
McKinley was diagnosed with Spastic Diplegia Cerebral Palsy last Tuesday and I haven't written about it because I was still processing.  I guess there is no time for processing in this life.  Over the weekend I caught McKinley's eyes rolling a couple of times, but we were busy, happy, relaxing, enjoying, and for the first time my family was beginning to exhale.  We were on Cape Cod and I didn't raise the red flag.  Yesterday though, I couldn't ignore the face that was so sweetly staring at me, playing, then clearly "leaving".  We went directly to the ER and she was sent to Baystate Children's Hospital.  They glued leads to her head and monitored her brain activity and sure enough "she left" an uncountable amount of times.  Clearly, this has not processed in my brain.  I am in, what we refer to as, survival mode.  In survival mode you take care of your children and hope they don't realize something is wrong.  In doing this you actually start to think that nothing is wrong, that is until you hear the voices of family, friends, nurses, and complete strangers.  Then you snap back quickly to the life you never planned on.
The good news is my mom is coming!!!  I can't wait to see her.  I need her.
I know things are going to get better.  I know how lucky I am to have my family and friends.  I know this life, while obviously not planned, is mine and I love it.  I know that even though McKinley's baby book has turned into a three ring binder of medical notes, insurance claims, and disability applications she is loved and prayed for by so many people in so many places.  If God was listening, he got an earful about McKinley today!

 McKinley during her EEG with her favorite pink fabric from her OT Roberta

 Madeline enjoying a ride through the halls of the hospital

Our romantic dinner of cold pizza with an excellent rooftop view!

Crosby showing a little attitude.  He wears his boots around the house so that his sister won't run over his toes with her walker!  Smart kid!

One week.  I have kept a countdown since the day I made the follow up neurology appointment.  Now it is only a week away.  When I made the appointment 3 months ago I envisioned myself walking into the appointment with and all the things I would know, but had yet to learn.  A lot of living has happened in the last 3 months, yet I can't remember most of it.  It has been a blur of joy and sadness.  My gut tells me we will get a diagnosis next Tuesday when we meet with Dr. Rosen.  However, I don't think a diagnosis is going to mean much to me.  I still won't know why, I still won't have a cure, I won't change what I do or say.  As much as it won't change anything, it will change everything.  My sweet girl will have a life long label.  It will follow her for the rest of her life, whether she learns to walk and talk like everyone else or not.  And again, I am trying to predict the future.
Today was rainy.  Jim, Madeline, McKinley and I watched movies with rotating naps.  Crosby came home from school and immediately went into big brother mode, making everyone remember how much they love him!  We needed this after his morning of throwing yogurt and coloring on the couch.  It was a therapeutic afternoon.  The 5 of us on the floor surrounded by cars, Legos, and baby toys for two hours.  It was heavenly.