Oh May oh May

By Alan

(Disclaimer- I think that I’m quickly realizing that I am drawn to the blog to express my upset, pain, and frustration.  When I am happy, I don’t want to come on here…I want to enjoy being happy.  Take those long voids between posts as good indicators of how well we are doing).

Tonight I was in a room filled with people who knew what I am going through.  They are going through a similar struggle.   Tonight Vickie and I attended an evening of rememberance at Yale.  The pain in the room was palpable.  While it was nice of the hospital to honor children that met an untimely passing, I can’t say that it helped.  In fact, it hurts even more to know that so many other people share our grief.  I know what I have gone through…I know what I am going though.  I wouldn’t wish it on my worst enemy.  It’s difficult to sit in an auditorium filled with people that lost their children.  Just when I thought I was placing Katie’s passing in a broader context, the mere count of children lost at Yale in hte past 2 years sends me spiraling back to square one.  How could this be?  Why do so many people have to suffer? 

With every bump in the road, there is a touching moment to balance the journey.  While I sat there tonight, trying to understand the number of people in pain around me, I was struck by the compassion of the staff at Yale.  Yet again, their character shone through.  To call these people professionals is a callous understatement of the work that they do.  They loved our children.  They shared in our loss.  And while I know that is true for each and every child represented this evening, I can’t help but feel humbled by the regard with which they spoke of our Munchkin.  This Saturday it will be six months since Katie left us, and still she brought tears to the eyes of people who see this type of suffering every day.  It was staggering.  There were some people that I knew Katie touched.  People we have grown to love as nurses, as people, as friends.  More suprisingly, there were people who we only interacted with for a short time sharing their well wishes, tears flowing down their faces.  How could this be?  I know she was a miracle, but Katie’s impact goes even further than her proud father knows.  Tonight we saw a nurse that we met for one night, almost 350 days ago.  She let Vickie hold Katie before she went down for her first surgery, understanding our pain and our risk.  We saw one of the surgical team that was working supporting some of the procedures toward the end-  tears flowing down her face as she inquired about our wellbeing. 

Unfortunately, tonight I wasn’t able to take the opportunity to thank all of the wonderful people that cared for and still care about Katie.  Those who know me know that I can talk!  I am rarely lacking the ability to express myself.  My daughter truly makes me speechless: her impact makes me so proud…her absense breaks my heart.  To all of the people who cared for Katie, thank you again.  It has almost been six months and I still think about you daily. 

As for the title of the post…

May 2nd marked 10 years that Vickie and I have been together…a decade…a third of our lives.  What a ride it’s been.

This Saturday it will be six months since we lost Katie.  She has now been gone longer than she was here in body. 

Sunday is Mother’s Day.  I wish that Katie’s mom could spend it with her Sweet Pea. 

May 19th would have been Katie’s first birthday. 

So in some strange way, I feel like tonight kicked off a challenging month of bitter-sweetness.  You should know that I think we are doing really well, but as one father said tonight, we’ll never get over this, we just need to get through it.  Tonight I just got a little bit stuck.

Positive ending-  last Sunday at church we were asked to think of the happiest moment of our lives.  I am thankful that I have a slew of worthy moments (i’ll spare you the list).  In the end, I rested on two candidates.  First, was Katie’s Christening (2nd Christening, with family, in a church).  Spiritually, it meant so much to have our daughter receive the blessing.  To share the moment with family, friends, and an incredibly happy and smiley Katie on a sunny day made it perfect.  It was true religion.  It was true family.  It was pure happiness.

The second candidate was more abstract-  arguably, the happiest day of my life is one that I don’t remember, one that I can’t recall the details of. Maybe I came home from a good day at work, to find my wife and daughter playing together.  We probably ate dinner, went to the beach for a walk, and came home to give Katie a bath, play with her for a while, read to her, and go to bed.  It was any day that wasn’t about events, or medicine, or HLHS.  It was the simplest days that were just about Mommy, Daddy, Katie…family. 

Goodnight all, but a special goodnight to Jack and Rudy.  We continue to keep them both in our thoughts and prayers.  We hope that Jack stays on his fantastic road to recovery, at home!  We hope that Rudy can get back to where he belongs soon, at home!

6 Responses to “Oh May oh May”

  1. amy fiorillo Says:

    There are no words to express how Katie has touched me. I think about your family often and I am happy to hear that the days are getting a little easier. There will be days, months, or moments that will be harder than others but keep those happy memories close to your heart.

  2. Molly Says:

    Pink works for you, Alan. :) I’ve been proudly wearing my Little Hearts bracelet daily to keep Katie’s memory alive. Keeping you three in my thoughts all the time.

  3. Dawn Bettencourt Says:

    to some it probably seems strange; that I daily check on Rudy and Katie’s parents, but being a HLHS family has a connection, prayers for strength during this tough month, Thinking of your entire family, Dawn’s Mom

  4. Liz Horvath Says:

    Words cant come to mind when you read such beautiful writing. You both are always in my prayers and thoughts.

  5. Barbara Jameson Says:

    Like so many others that have followed Katie’s life through “A Munchin’s Fight” over the past year it has become part of my daily life to check in on your blog – in the past few months I have not expected to see the daily posts….I have hoped that during the time between posts that you both are living this new life that is your reality and I am glad that to hear that you are doing well… with that said, what a special night at Yale … although so much of your pain came back by being there in remembrance of Katie and the other families that are sharing the loss of thier children, what an unbelievable tribute and honor to see and feel the emotions of people who were and still are touched by Katie’s life. As Katie’s parents, you must feel such pride in the lives she has touched. I am glad it gives you comfort – she will always be with us !!
    May is one of the most beautiful months of the year….Happy 10th anniversary to you and Vickie – this is the month that you started your journey….Happy Mother’s Day Vickie – whether our children are with us or not, once a mother, always a mother. Nothing can take that away from you. Katie will be with you every Mother’s Day and every other day of your life. We celebrated my Mom’s 85th bd on May 1st with family in Chicago – I mourned the one year loss of a best friend today – every day of every month is a celebration/rembrance for somebody, somewhere. All we can do is continue on in this life. I caught the last few minutes of Michael Fox’s show tongight about optimism and it touched me deeply – we all have a choice in how we deal with life and the many hurdles, disappointments and devastations that are thrown our way….you and Vickie are shining examples of living life with optimism, hope, action and love. I so wish that everyone could live by your example – what a wonderful world it would be. My thoughts are with you both and with your family in the coming days. They will be very trying but please know that you are not alone – I will be celebrating the month that Katie came into this world….she made it a more beautiful place. Much love xxx

  6. Aunt Barbara Says:

    I do miss your writing, but am glad that it shows more of your days are bearable. Katie is still with us and will be forever. Her imprint on this world is truly a blessing. A memory always. love,

Leave a Reply