Jessica and the Boston Marathon

This past Monday was a day of firsts for many people in Massachusetts.  My family and I attended our first Boston Marathon.  My close friend Christina was running her first Boston Marathon, and she was running on the Children's Hospital team.  Jessica's sister Amanda has a lot of medical issues, so Christina graciously asked if she could run for Amanda.  It was the first time in my life that a friend had ever done something so touching and inspiring for my family.  Running 26.2 miles is HUGE.  And to run for my child?  Christina is the best in my book.

The other "first" that occured that day was not inspiring as the ones I listed above.  As I am sure you all know, Boston had it's first ever terror attack (at least in my lifetime) on Monday.  Bad things happen all the time, but they never happen to us.  The bad things happen to other people, in other cities.

Not this time.

We were cheering for Christina along the 13th mile of the race in a Children's Hospital cheering section.  It was a beautiful spring day.  The kids were playing on the grass outside of a lovely church, and I was lounging in my chair by the street getting ready to witness something I had never seen before.  I thought to myself that this was one of the best days I have had with my family in a long time. 

As the runners started to come by, I was feeling a sense of pride and excitement that I had never experienced before.  Each time a Children's Hospital runner came by in their orange and blue checked singlets, we would scream loudly and bang our cowbells (yes, cowbells).  It was hard not to feel  emotion when a runner came by and their family would hug them and share how proud they were of them.  Those men and women were running for children.  Sick children.  They were running 26.2 miles - putting their bodies through something I could never imagine.  Indredible.

Our original plan was to see Christina pass, and then drive to Boston and see her cross the finish line.  By the time she ended up passing us, we had been in Wellesley for about 3 1/2 hours.  Jessica was getting fidgety, and on the verge of a meltdown.  Amanda was feeling anxious because of the crowd, and Jack was just plain tired.  We decided that we would leave for home, and not go to the finish line.

Once home, we unpacked the car and I took Jack & Jessica over to Christina's to decorate her yard.  We wanted to let her know how proud we were of her.  How thankful we were for her friendship.  We wanted everyone who drove by her house to know that she had done a good thing. 

On the from Christina's to my house, I received a text message from her running partner who was out of state on vacation.  He asked what was going on, because he was getting alerts on his cell phone that there was an explosion at the Marathon.  I immediately turned on the radio, and knew there was something really wrong when a music station was streaming news from a talk radio station.  I listened for about 2 minutes, but once I got the gist of it I turned it off because Jack and Jessica were still in the car.  They didn't need to hear something potentially horrific about an event they just attended.

I was praying the whole way home that it was just an electrical fire or something less provocative.  Once I got home and saw the news footage, I immediately knew it was not an electrical fire.  The sidewalks were red.  Today's colors were blue and yellow.  Not red.

There were a few hours of frantic texting and calling trying to figure out where Christina and her family were.  I have never been through anything like this in my life - and I experienced it 3rd or 4th hand.  I can only imagine how Christina was feeling.  She is such an upbeat, kind, and inspirational person - I didn't want these events to change her. 

Luckily Christina and her family were safe.  You can read her story here.

I have been truly inspired by so many things that happened this week.  The heroism - the raw humanity of people in pain helping other people.  I used to complain a lot about stupid, petty things.  Not anymore. 

It is the little things that happen in your day that change your destiny.  Don't get mad at the next meltdown.  If you need to slow down for a friend, at the risk of not doing your best - do it.  It could just change your life.

And, by the way - I hope you all have a Christina in your life.  Mine is pretty freaking awesome.

Jessica and her 10th Birthday

Jessica is 10 years old today.  I have a myriad of emotions over this, so I am going to give you fare warning - I have no idea where this blog post will end up.

Jessica's birth story was not the norm.  She was born at 34 weeks, and I felt AWFUL durning the whole pregnancy.  I was a high risk pregnancy because I had Amanda (Jessica's older sister) at 33 weeks with an emergency c-section and also developed preeclampsia pretty bad around 33 weeks.  We also detected along the way that Jessica had a 2 vessel cord.  From my understanding (at the time), a 2 vessel cord wasn't anything to get overly worried about.  Mommy & baby would be monitored frequently with more intense ultrasounds.  Looking back, I am pretty sure I was in denial about something actually being wrong with Jessica, because I already had a special needs child.  I certainly was not going to have another one, right??

Like I said, my pregnancy was horrible.  The only saving grace was that for some miraculous reason, my best friend and co-worker got pregnant at the very same time.  We even had the same due date; May 15th.  If you are reading this today, then you are figuring out that Jessica never made it to the due date! 

The other tidbit of information is that my husband and I were not married when I was pregnant.  We had been dating for almost a year, so Jessica was quite a surprise.  It sent us into a tailspin trying to figure out what our relationship really was, and where it was going.  My husband was really good with Amanda, so I knew that he would make a good Dad.  I wasn't really worried about that.  The thing with my husband is he just doesn't make decisions.  He would avoid everything if he could.  After months of conversation, we decided to get married after Jessica was born.  We had a quick little ceremony at the local Justice of the Peace.  We had 2 witnesses, Amanda and Jessica.  Needless to say, I am the awful woman that stole their son and his wedding experience from his family.  But we can save in law relationships for another day!

As I am writing this, I realize I am getting off track.  But it is getting me to remember little things that were happening in 2002/2003.  I remember getting a call from an old fiancee, who was calling to apologize at how he had treated me in the past.  It was a very nice call because I still thought about him a lot (and occasionally still do).  We both checked in with each other, and for some reason I felt really proud to tell him I was pregnant.  I wanted him to know that as much as he had hurt me, that I was able to move on and be happy.  If I am remembering correctly, he was broken up with his girlfriend at the time of the call - but I can't speak to what his true motives were making that call.

Ok, enough with the talking about old flames!  This is Jessica's 10th birthday!!

Jessica was born at 34 1/2 weeks, and weighed in at 3lbs 14oz.  The doctors immediately did ultrasounds on her kidneys to determine if there were any residual effects from the 2 vessel cord.  I was so relieved to find out that she was fine!  She remained in the NICU for a little under 2 weeks, and then we were allowed to bring her home.  I remember being happy and nervous at the same time.

Those first few months seemed really easy.  Jessica was a good baby.  She loved the swing, and was really happy.  We ended up moving to the home we live in now, and as she got older I started to notice that she was missing some milestones.  We had Early Intervention in when she was 6 weeks old, so we at least had a team around us to get her to where she needed to be.  When she was around 2 years old I started to have suspicions that Jessica had autism.  She wouldn't sleep.  She would never ask me for something to eat and drink.  If she wanted juice, she would go to the fridge and get the juice and bring it to me.  She was very independent in ways that she shouldn't have been.  She even had the classic honeymoon period where her speech was really emerging, but then it sadly went away.

As I look at Jessica over the past 10 years, I have to say that the age she is right now is my favorite (minus the puberty).  She tells silly jokes, is a talented artist, is starting to understand feelings and how to express them.  We have found out that she is a really good speller.  She still loves her stuffed animals, but has moved on to the awesomeness that is Pokemon.  I have never met a girl like Jessica.  A girl that shines so bright, but can also be so isolated.  I wouldn't trade her for anyone or anything.  I love her, and absolutely cannot believe that the little preemie has turned into my grown up, decade old Jessica.

Happy Birthday Jessica!!

Jessica UPATE: Panera response

I wanted to give an update on our recent outing to Panera.  A friend of mine urged me to send some feedback to their customer service.  I wasn't going to, but I was kind of curious as to what their response would be.

I sent them an email detailing our experience, and this is the email I got back:

Dear Darcy,

 

Thank you for taking the time to write such a thoughtful letter to us regarding your experience at our cafe in North Andover, MA. We appreciate your feedback.

At Panera Bread we take great pride in conforming to all

the standards set forth by the Americans with Disabilities Act

(ADA). Unfortunately, there is nothing we can do about our cafe

being busy. I am sorry to hear it was overwhelming for Jessica but

it sounds as though she handled herself beautifully! I wish that we could

make our cafe a perfect experience for all of our guests but unfortunately, that

simply is not realistic. Thanks again for contacting us and we hope to see

you at Panera Bread again soon.

Sincerely,
Evelyn Margot
Customer Service Representative
Panera Bread / PR Restaurants LLC

 

I really can't find fault in this response.  Do I think they are going to create a sensory corner for kids like Jessica?  No.  Do I think they are following all ADA specifications?  Maybe.  I think that their floor plan is set up for when there are a certain amount of customers in the cafe, but does not really have extra room for when the place is super busy.  Could they monitor their capacity better?  Sure.  Is it worth the fight?  I don't know. 

 

Evelyn certainly replied in an appropriate way, although there is a hint of sarcasm to her note.   "Unfortunately, there is nothing we can do about our cafe

being busy"

Really, Evelyn?  You think?  I am sure there is a maximum capacity to your store, and I am pretty sure it was exceeded that afternoon.  I picture Evelyn and her co-workers laughing at my email because I am some crazy lady that is asking that Panera not be busy. 

 

I am not trying to be confrontational, but it bums me out that Panera is added to the long list of places that I can't take Jessica to.  Panera is not worth an anxiety attack or a meltdown.  A place that she used to be happy to visit is on the no fly list.  I really don't want special treatment for Jessica.  I just want her to have access to the places that every other kid has.

 

What do you think??