Wednesday, March 13, 2013

Sophie's Second Birthday

On March 12th, 2013, Sophie would have been 2 years old.  It is crazy to think how much has happened since the day of her birth:  the amazing feeling that comes along with being parents for the first time -- bringing Sophie home and getting into a routine -- a few weeks later noticing that her muscles seemed weak -- a few weeks after that getting her SMA diagnosis -- making the next handful of months as happy and comfortable as possible for her (while at the same time being so scared that she would suffer) -- having to say goodbye -- traveling to Cambodia to volunteer in a clinic for orphans with disabilities, becoming pregnant with our second baby (who does not have SMA) -- the birth of our second child -- and since then taking each day one at a time.  It all seems surreal. 

We wish more than anything that we could have Sophie with us, in a healthy non-SMA body.  At the same time, it almost feels selfish to feel that way.  Our hope is that she is somewhere amazing right now, spending time with those who have gone before us, watching over her little sister.  We miss her more now than even the first day she passed.  We will continue to try living better lives because of her.  Grief is a never ending process, overwhelming at times, but somehow we push through.  We think of the mental and emotional strength that Sophie had and that drives us to keep on going.

For Sophie's second birthday, we decided to visit several of the spots that we frequented with her including:  her favorite resteruant (it was her favorite because there were ceiling fans right over the tables), the tree that was planted in honor of her, the plaque that was put up in memory of her, and the zoo.  At the end of the day, we had an Elmo cake that we let Evelyn (her little sister) enjoy.  Sophie and Evelyn definitely look like sisters!  Pictures below show our day and Sophie is the one with the 'love you' onesie in the first set of pictures and in the second set you can see us holding her the day she was born. 

 We will post again (hopefully soon) regarding some of the projects we've been working on which include an SMA study, a hospice related research study, and advocacy work for SMA carrier screening.