Wednesday, October 26, 2011

Happy Birthday Darling Girl!

Six years ago today, my darling daughter came into this world with her mom throwing a fit.  Little did either of us know that this was going to be a pattern for the next six years – mom throwing fits to make her Little Diva’s life a bit easier.  

I had just fired my obstetrician because he wasn’t listening.  I spent a decent part of my pregnancy talking to the doctors in the practice about what to expect in the delivery room.  I had heard stories from the trenches of moms who were denied epidurals until it was “too late” or who asked to avoid other unpleasantries and were overruled in the heat of the moment.  So we had had several very calm discussions about what I wanted and what they would agree too.  And here I was ready to push and the doctor announced he was turning off the epidural.  I fired him on the spot.  He and I argued for 15 minutes but I refused to budge.  It’s amazing what the pain of a contraction can do to your will when the going gets tough.  He said, “You can’t take the epidural home you know!”  and I replied, “Yeah, I get that you idiot.  All I am asking for is the chance to push before you turn it off.”   Twenty minutes later, epidural in place, LD was born.  Now you may argue that this argument was actually about making my life easier, and that’s true, but I really wanted LD to enter a room that was reasonably calm, not with her mom blubbering and coming apart at the seams because she’s a wimp when it comes to pain.

Little Diva at hippotherapy.
I can’t believe it’s been six years.  Since that time, I have had a lot of fights to fight on behalf of Little Diva, but it’s Little Diva who has done the majority of the hard work.  She’s works hard in therapies to gain body strength and is now able to walk with assistance or in a gait trainer.  Her fine motor skills are improving slowly but surely.  She isn’t able to isolate her fingers enough to be able to use the tablet PC yet, but we’re working on it.  Importantly, after finally obtaining Frisium three weeks ago, she is no longer seizing and appears to have regained all those skills she had before our seizure crisis in August. Right now, life is really good.

Everyone tells you that being a parent will change your priorities, but people tend to say this in a way that makes it sound like the experience will be similar to a root canal.  They talk about how you’ll never sleep again and you’ll forget your husband’s name and the kids will drive you crazy.  And it’s all true, especially the sleep part when you child has Angelman Syndrome.  But somehow it was never made clear to me how much it wouldn’t matter to me that my priorities would change. How I would spend so much time just enjoying my children and laughing with them.  I know we all love to bond over stories of how hard it is to parent and I am sure there will be posts galore here eventually on precisely that topic.  But for today, I want to remind myself about the wonderful world I now live in because Little Diva is part of it.

Because Little Diva is in my life, I more easily see the pure joy in bubbles or whistles or the wind blowing through one’s hair. I appreciate the drive and need for independence more because I see the wonder on her face when she powers her tricycle by herself.   I value every accomplishment she obtains, no matter how trivial, because I know how hard she has to work to achieve it.  And because of this, I never take for granted the accomplishments my son achieves either.  They are magical in their own right and deserve to be acknowledged and celebrated.  Because of Little Diva, I have met some of the most amazing people on the planet.  I have never been a fan of the sentiment that God gives special needs kids to special people, but after meeting so many parents, teachers, and caregivers in our community that are extraordinary, it makes me wonder.  Because of Little Diva, I have new friends I would never have met that have enriched my life more than I can say.  I have strengthened ties with old friends and family, because their support has been unwavering and important, even when I fail to write or call for months on end because I am scrambling to deal with life as I know it.  Because of my Little Diva, I have more faith in the world and the people in it than I did before she arrived.

I dropped off cupcakes today at her school and her daycare.  While she will probably lick the icing once and eat applesauce instead, she will be surrounded by friends at both places singing happy birthday and celebrating.  And knowing her, she’ll be sitting there smiling and laughing with the joy of being alive.

Friday, September 23, 2011

My second blog post.

My husband actually read my first blog post and said, “Great post.  But now you are screwed.  Aren’t you supposed to blog about day to day things and what you ate for lunch*?  How are you going to follow that one up?” 

My first thought was, “Wow! He read my blog!”  He’s not a fan of me putting things out there in general, so my starting a blog is giving him the heebie-jeebies.  As a consequence, full names won’t be mentioned and cute interesting nicknames will emerge soon. But I was so happy that he read it at all that I was on cloud nine.

My second thought was, “Wow! He has a point.”

Honestly, I don’t know what I am going to post about.  I hadn’t thought about it much, but then his comment did start to bother me.  And blogging about why I want to blog seems so self-indulgent that I am already cringing.  So I will announce now that I don’t expect every post to be profound, or interesting, or even grammatically correct. I give myself permission to spell things creatively and to use punctuation in ways that make me happy, even if they would make an editor cringe.  I will whine, and be depressed, and share things that bring a smile to my face, even if no one else gets it.  So there.

And if people in my life want to chime in on their nicknames before I write some more, here is your chance. 

*He’s confusing blogging with tweeting, but I got the point.

Saturday, September 10, 2011

September Anniversaries

Ten years ago on a beautiful Tuesday morning, I was pacing around a lecture room at NYU Medical Center, cursing the talk I was scheduled to give later that day.  My research wasn’t going well, the results were complicated and potentially boring, yet this was my yearly opportunity to show the entire department what I had accomplished.  I remember thinking I would give anything if I could postpone this talk.

One of the administrative assistants walked in where I was practicing and said, “Did you hear that a plane hit the World Trade Center?”  I immediately recalled the small plane that had been buzzing around Manhattan all week with advertisements trailing in its wake.  I thought, “That idiot hit the World Trade Center? I hope he didn’t hurt anyone.” 

The assistant looked at me with this odd glazed over look in her eyes, a look I would become familiar with that day, and said, “The plane hit around the 80th floor.  My son works on the 72nd* floor.”  That was the moment my stomach flipped over. Her voice was too calm.  She was looking at me, but not seeing me.  I said, “Why don’t you call him?” She looked at me and said, “I hate to bother him at work,” in that strange calm voice, but she turned and left the room. 

I wandered down the hall to find some of my coworkers who were trying to gather information.  We lost internet and phone so quickly that day that it was hard to determine exactly what was happening.  People were coming down from higher floors reporting that they could see smoke.  We started hearing about second and third planes.  In desperation, we convinced a medical student to let us all go to his room and turn on the television to try and get some information. The picture we saw was so wrong.  There was only one tower.  I remember saying, “Why is there only one tower?” and a medical student telling me in the calmest voice that there were two towers and that this picture had to be a news story showing potential possibilities.  He had that glazed over look in his eyes too.  Then the second tower fell.  Another medical student whose father worked in the area silently collapsed in tears.  We all sat with our mouths open, eyes glazed over, desperate for news. 

After an hour, one of the medical students stood up and calmly left the room, returning with scrubs and his medical jacket on.  “They are going to need us,” he said.  This seemed to instill life back into the room.  Students began moving and grabbing bags and getting ready to hit the hospital and be ready for the people who would surely arrive. Their action mobilized me into thinking it was time to try to get home to Connecticut, so I grabbed my things and started the walk uptown to the train. I looked back at NYU to see row after row of students and doctors in scrubs next to gurneys, waiting for the wounded who wouldn’t arrive.  There just weren’t that many survivors to be treated.

As I headed uptown, the streets were eerily silent.  I would occasionally find myself walking next to someone covered in fine gray dust, carrying their high heels or jackets in their hands, as they slowly and silently moved along the sidewalk.  As I approached Grand Central Station, I saw a madhouse.  Heart pounding I started to run and push through the door to see if there would be any trains running. I found that there was one train leaving in 5 minutes to Connecticut, and I was desperate to be on it. 

When I reached the platform, out of breath and in tears, it was clear that there was no way to get onto that train.   The door closing bell was ringing, and people were standing in the aisles and in the entryways to the train and I couldn’t see a space to squeeze into.  I looked up and met the gaze of a tall thin man who smiled, reached out and said, “Grab my hand.  I’ll get you on.”  I did and he pulled me hard as the doors shut, squeezing me into the train at the last moment.  My savior then said, “Grab my shirt and we’ll get out of this mess.”  So I did and we began to push through the aisles and the crowds of stunned people towards the front of the train.  We laughed as we pushed and shimmied through the crowds, me holding the hem of his sweater, him politely asking people to move. In the last car, we found some empty space we sank down to sit on the floor, grinning at each other.  That’s when I noticed his unnaturally white hair, the gray powder on his shoulders, the large scratch down the side of his neck, the glazed look in his eyes.  I said, “Were you close?” suddenly confused as to how he could be sitting across from me grinning.  He said, “Yes.  I was on the 72nd* floor.”  A woman was quietly sobbing a few seats up from us, but everyone else around us grew still and turned to my companion.  A well-dressed lawyer was sitting on the seat facing our floor space.  He had been on his way into Manhattan when all passengers were told to stay on the train, that they were going back to Connecticut and no one was allowed to leave.  He said to the man, “Here.  I have service.  Why don’t you use my phone and call your family.”The man replied, “No thanks.  I’ll be home in half an hour.”  I said, “I think your family would want to hear from you,” thinking back to the assistant from that morning.  But he just smiled and said, “It’s fine.  I’ll be home soon.” 

It was like we were suddenly sitting with a loaded gun in the room.  The lawyer kept looking at me and I kept looking at the scratch on this man’s neck.  As the train started to move, my companion started to sob.  Quiet wrenching sobs that seemed to dissolve the happy, grinning man I had followed through the train into a smaller and smaller space. Suddenly the lawyer and two others surrounded him and began patting, offering water, talking calmly.  One of them asked me to please take his seat so I moved out of the fray.  At every stop we were met with rescue workers who took the injured right off the train and straight to the hospital.  My friend was apparently one of many who walked in shock to the train, their only thought being to get home where they would be safe.
Five years ago this month, I cradled my baby girl in my arms as I listened to the neurologist tell me that we needed to take her to the hospital immediately because she had a potentially fatal neurological issue.  My suspicions were correct, she was having seizures, but he sounded like this was really serious.  Not, ‘give her medication’ serious.  But, ‘she might die’, serious.  I felt a panic set in that seemed to constrict my heart and narrow my vision.  Everything was too bright and too calm.  I remember asking, “Shouldn’t we get an ambulance?”  He said, “No.  You should probably get lunch first anyway since it will take them time to admit her.”  So not only was it potentially fatal, there was no rush to get to the hospital.  My breath seemed to fly out of me as I realized this must mean there is no treatment.  I walked around with that glazed look for the next few weeks as we awaited test results.  By the end of September, we knew our child had Angelman Syndrome.  In some ways, I was relieved.  I had been searching for answers since she had been born and now I had one.  I had assembled a list of disorders that might explain all her symptoms, and by the time we got our diagnosis, the list was getting shorter and more frightening with respect to outcomes.  Angelman Syndrome was one of the few things on my list that wasn’t fatal.  While I refuse to remember the exact date, September will always be the month I lost the child I thought I had, and found my Angel.  It took a few more months, but eventually, I moved beyond the shock and started looking for something I could do to help her.  I was going to fight.
Three years ago this month, I was desperately hoping to go into labor.  I was a week overdue with my son, and spending my days editing documents and helping assemble a website for the Foundation for Angelman Syndrome Therapeutics.  In three short years since my daughter’s diagnosis, the science on Angelman Syndrome had moved forward at an astonishing pace.  Research on Fragile X Syndrome and Rett Syndrome also indicated that neurological disorders might actually be treatable!  But these are rare disorders and the money just wasn’t there to push for therapeutics.  A set of parents to children with Angelman Syndrome and researchers in the field had been talking for over a year about “What ifs?” and “Could we try X?” and “Why aren’t people pursing Y?”.  Earlier that year, Paula Evans decided it was time to take action and we had assembled a group that was dedicated to finding a “cure” (meaning a therapeutic) for Angelman Syndrome.  I will always remember the official birth of F.A.S.T. since it corresponded so perfectly with the birth of my son and exemplified a group of people refusing to go down without a good fight.
This September, F.A.S.T. was awarded $250,000 in the Vivint Gives Back contest thanks to the hard work and dedication of the families and friends of those with Angelman Syndrome.  This money is already earmarked for a clinical trial to test one of the first potential therapeutics discovered using funds F.A.S.T. raised for that purpose.  For many in our community, it is a time of immense hope.  But for other families, September is always going to be the month when they lost their child with Angelman Syndrome.  One to seizures, one to an accident, others to causes unknown to me.  For those children, we were not fast enough.  And I imagine that those who loved these children will have that glazed look in their eyes for some time, wondering what might have been.  And someday, they may be moved to action, like so many in our community who have lost children before them, to do something meaningful and lasting in memory of their child. 

September will always be a month tied to both mourning and birth for me.  A month of new beginnings, and of new realities.  I will spend 9/11 this year, not at a dedication or at a memorial, but at a birthday party for my son.  I will be surrounded with laughter and toys and cake, and I will celebrate the good that can rise from the ashes.

* I can't remember the exact floors these two people mentioned to me.  72 and 82 ring in my head,  but numbers aren't my friends and this could be way off.