It was one year ago today that our precious angel Sonia passed away.  Just like Israel Independence Day is always preceded by a day of mourning for Memorial Day, my birthday will forever be preceeded by a day of mourning and rememberance for the child we lost.

In some ways it seems like it has been far longer than a year.  Reluctantly, our life has continued on almost just as it had before Sonia came into our lives.  We are back at home, I’m back (and away) at work and Faye is back to her role as the center of attention.  However, in other ways it seems like just yesterday I was holding her in my arms and making silly faces together.  Her mark on our life is permanent and persistent.  Sometimes her memory will pop up at the most unexpected times – and that’s a good thing.  Shannon and I are always struggling to find “correct” ways to remember and honor our daughter, but I think what means the most to me is when I’m going about my daily life and her memory just floods my mind and brings a smile to my face or a tear to my eye.

Sonia’s memory makes me a better person too.  When I make decisions and go about my daily life, I often think about what Sonia would think of my actions or how I can honor her life by being better to others and fully appreciating life.

While Faye can’t quite post on the blog yet (not for lack of trying), I know she too remembers her sister.  She loves to look through Sonia’s photo album and still talks about her “sister in heaven.”  It was a little sad to answer Faye’s questions at first, and to know that she missed her too, but now I can appreciate how wonderful it is that Faye really knew her sister and can actually talk about her.  I know it might be a lot to expect a child to remember 2-year-old memories for the rest of her life, but I think if we foster her memories and ideas about her sister they might actually stick.  The 2.5 million pictures of the two of them together might help too.

September 10th will probably always be a bitter-sweet day for us – a reminder or our loss, but another opportunity to cherish the joy that Sonia brought to us.  You are forever in our hearts.

This post is a little late, but we’ve been busy running around before I deploy.  I wanted to actually take some time to sit down and write something meaningful.

The unveiling of Sonia’s gravestone was held over Memorial Day weekend.  It was a beautiful sunny day, just like it was on the day of her funeral.  We were surrounded by family and friends that came from near and far.  The atmosphere was different than when we gathered there last September.  I felt like we said goodbye to her then, where as we were saying hello and we miss you at the unveiling.

The rabbi that lead the funeral had to cancel at the last minute to due an illness in his family, but he had a friend come in his place.  He did a wonderful job and even though he barely knew our family, he gave an excellent sermon and honored Sonia well.  There was an airshow going on nearby for fleet week, and some beautiful classic planes flew overhead during the ceremony.  While some might have found this distracting, the pilot in me thought it was a fitting tribute.  I’d like to think Sonia arranged it for us.

The stone itself is beautiful.  Shannon and I put a lot of thought into the design and it came out just as we had hoped.

The permanence and finality of the memorial were sad and comforting at the same time.  It reminds us of her passing, but it gives us something physical to touch and see and remember her by.  Faye did not attend the ceremony, but we all came back the following day to visit with Sonia and place rocks on her gravestone (a Jewish custom).  Faye did real well and it was touching to hear her talk about sister. 

Faye is a real “gatherer” whenever we go outside.  I often come back from our walks with my pockets filled with rocks (at her request).  What we have started to do is pick one special rock from each of our walks and place them in a special box for Sonia.  Now when we go visit her, Faye can bring a little piece of home to Sonia.

We can’t thank Marv and Nathalie enough for opening their house to us and our family for the reception following the ceremony.  You both made what was going to be a quick get-together into a warm family gathering.  Thanks to all who came to honor Sonia.  We hope that this was just one of many visits you will make to her graveside.

One of Jerry’s closest friends, Marvin Bloom, and his wife have generously offered their home to us on the afternoon of Sonia’s stone unveiling.  This means we WILL NOT be going to Ben’s Deli following the ceremony, but instead to the Bloom home which is at 2 Maple Way in Woodbury, NY.  We will be having kosher catering.  All other details will remain the same.

To begin with, Sonia’s unveiling will be on Sunday, May 25th at 10:30 am.  Following the short ceremony, we will meet for lunch at Ben’s Deli in Woodbury, a kosher restaurant near the cemetery.  Click here for more details.

Sonia’s birthday is today, April 24th.  She would have been one.  Below is Jason’s first post after her birth, one year ago.

Sonia Chaya Rubin was born just before midnight on April 24th.  Shannon was a trooper as usual.  The epidural really helped to preserve her strength for when she really needed it.  I could not believe how quick she pushed that kid out.  We were watching the Daily Show when she suddenly told me that she really felt like she needed to start pushing.  I grabbed the nurse, who grabbed the doctor.  He went to do his normal check and surprisingly told us that the head was right there ready to come out.

No one had to tell Shannon to push, she kept asking if she could continue to push, with or without a contraction.  I doubt there were more than ten pushes before Sonia popped out and let out a beautiful cry.  Unlike Faye, who needed some stimulation to get her moving around and talking Sonia was anxious to interact with her new world.

With all that we’ve gone through with the baby, I think we both were hesitant to see what she looked like.  All our fears were removed once we saw this beautiful girl.  She was plump and healthy, like her sister (despite the underestimation of weight by the ultrasound techs) and as cute as could be.  She looks just like her sister (although a little less chubby in the cheeks), but has a bit more hair than Faye did and it is a little bit darker too.

This really has been some year.  My life will never be the same, and I am so thankful for that.  I am honored to have been Sonia’s mom, and I am so thankful for every minute of her 4 1/2 months on this earth.  She was such a blessing to us, and the few months of cuddles I got from her made everything else seem to fade away.  When she was diagnosed during my 5th month of pregnancy, the doctors were not sure she would survive her first days, let alone months.  I will never forget the doctor who suggested terminating the pregnancy because Sonia wouldn’t be a healthy baby.  He wanted us to understand her chances of survival and how it would affect our family to live with a sick child.  I only wish he could understand how deeply Sonia’s life touched our family and so many of you in her short life.  It was a beautiful life and I am so thankful for every moment of it.

I am also so deeply thankful for the way Sonia’s life touched so many of you.  As the mother of a sick baby, I didn’t get to parade around and show off my beautiful bundle to the world, something I still miss so deeply today.  But knowing that so many of you were following along with Sonia through this page has brought me so much joy.  I looked forward to checking in throughout the days of her life – especially the harder ones – to read your comments and feel your love and support.

A part of me has put aside my memories over the past 7.5 months in order to survive Sonia’s death.  But now, on her birthday, I want to take the time to really remember my sweet girl.  She had the sweetest eyes and smile.  When she was on ECMO (life support) in her first weeks, we joked that she was one of the few who could pull off cute in that situation.  And even when the doctors packed weight and calories onto her tiny body, she held her own in the cute department and made all of her care takers smile. 

My fondest memories are toward the end of her life when she was doing so well.  I would call to check in only to find she was out with Dr. Pettie on rounds or hanging out with the nurses.  On one occasion I walked into her room to find an empty bed.  When I went to find the nurse, a few of them were smiling at me and asking how I could walk right past Sonia in their arms at the nurse’s station.  I also fondly remember coming in when she was tiny to find her hair in different “styles”.  The night nurses would bathe her and spike or play with her hair so that it looked different in the mornings. One nurse even stuck a bow to her head and the heads of the other babies in her pod on a particularly rough day.  I remember the 3 times we took Sonia outside, and how she fell asleep on 2 of those trips.  The first time was such an event, and I was so thankful for my friend Erin who went out with us.  By that time, I knew so many families and everyone was excited for her to finally feel the sunshine and breathe the fresh air.  It is amazing how the families pulled for each other’s babies and really took care of one another. 

Today, I want to remember the beauty that was my Sonia, apart from her illnesses.  The weight of her in my arms was one of the best feelings in the world.  And though it was only for a short part of her life, I know how much of a blessing those times were.  Too many mommies never get that chance.  I am thankful for all of you who were able to visit her in person.  That means so much to me.  I am also thankful for all of the families and babies we got to know during Sonia’s life.  My life was turned upside down and inside out during Sonia’s life, but it was enriched beyond words in those short months.  I am thankful for every part of it, and for the chance to love on and comfort my sweet baby Sonia.  I pray for happy memories today (once I get to sleep and awake again) and for my joy for Sonia’s life to shine through my sadness.  Thank you again for all of your love and prayers and support.  I am so thankful for each and every one of you.

QUICK REQUEST: I am going to be putting together a scrapbook of my Sonia’s photos and photos of friends, family, and doctors and nurses who were a part of her life.  If you were a part of our journey up there either as a visitor or fellow heart family or hospital staff, please photos of you and any memories you want to share.  I want to try to remember as much of her life and the people who were a part of it in this book.  Thanks in advance!

Lots of love,

Shannon

We are planning to have the unveiling of Sonia’s gravestone at 10:30 a.m. on May 25, 2008, which is the Sunday of Memorial day weekend.  This will be a time for our friends and family to gather at her grave to honor her memory, and place a rock on her gravestone.  Following the brief ceremony, we will gather either at a family member’s house or a restaurant in Long Island.

If you are near and would like to join us, we will post specific information as the day gets closer.  Sonia is buried in Long Island, New York in the New Montefiore Cemetery.  We would love to be surrounded by loved ones on that day.

Sonia’s birthday is also approaching on April 24th, and I know it will be a hard day.  I think about Sonia all of the time, and see her in so many baby faces that I pass, especially those with dark hair and blue eyes.  She had such beautiful eyes.  We miss Sonia so dearly.  I know these missed milestones will be hard for Jason and me, but we are doing our best to remember our girl and the miracle that was her life.

LATEST UPDATE: One of Jerry’s closest friends, Marvin Bloom, and his wife have generously offered their home to us on the afternoon of Sonia’s stone unveiling.  This means we WILL NOT be going to Ben’s Deli following the ceremony, but instead to the Bloom home which is at 2 Maple Way in Woodbury, NY.  We will be having kosher catering.  All other details will remain the same.  We will email out directions and try to have them at the ceremony.