(ab)normality

It has been very difficult to figure out what to write over the past month.  There has been so much emotion, and I haven’t been able to translate those emotions into words.  I told many of you before that I was nothing more than the reporter of Katie’s beautiful life, and I am proving that right now!  Constipated is the only way to describe my thoughts.  There is no fluidity, no consistency, little coherence.  I suppose life is really a series of moments strung together, and the last month is testiment to that. 

Katie’s headstone was placed- it’s beautiful, but it’s so final!  I’m very satisfied that the headstone “fits” the location.  I am glad that Katie’s life is appropriately honored, but crushed by the irrevocability of the situation.  

We found out we are having a boy and  it’s NOT a hypoplast!- I’m happy it’s a boy b/c I couldn’t help but feel that having a girl right now would be too big a diapar to fill (shoes didn’t seem to work).  I’m obviously delighted that the baby is not a hypoplast, but we’re not out of the congenital heart defect woods yet.  The sad thing is, my view of healthy is now very skewed.  A simple hole in the heart would be a bargain (I don’t want the baby to have one, but if that’s all they’d have to deal with, it wouldn’t be too harsh).  Twisted, right? 

Some college friends got married- it was amazing to reminisce about the glory days and fill in the gaps  of the last couple of years.  It was a surreal fusion of past and present-  we’re all still goofy, but now there are a slew of life experiences that lay in our wake and invariably impact our present…love, loss…

Overall, I feel like my sense of being is off-kilter.  As we graduallyadjust to our future as parents who’ve unfairly lost a child, I am also learning…or fighting the reality that while the world is still the same, everything is different.  Everything is different because I see it differently.  My idealism is tempered.  I’m not jaded, but there is certainly a twist or variation to my opinions, my priorities…my life.

Life is good.  We are filled with hope and love for the baby boy we hope to meet in December.  We are excited to celebrate our 6 year wedding anniversary this weekend.  We appreciate the love we hold in our hearts for our wonderful daughter.  We are infinity grateful for the time we had to share with her.  We are forever scarred by feeling of loss when she left.  Everything is as it is, perhaps not how it should be or how we’d exactly want it to be.  We are living again…(ab)normally.

An odd thing

It may seem odd, but at no time during Katie’s life did I ever ask her or tell her to “fight harder”.  Tonight, I sat and looked at pictures of Katie’s life, and for the first time I was struck by the number of hospital pictures we had, and in turn, the reality that was ours for those months.  Yet, with all the machines, all the uncertainty, I never asked my daughter to try harder.  Tonight, that hit me. 

It wasn’t a concious effort not to ask her or want her to give it her all.  I suppose it was an assumption I made about my Munchkin that she would give it everything she had at all times.  As I looked at those pictures tonight I was torn…wishing she was here, thankful she is gone.  I wish my one year old daughter would be here for the upcoming father’s day, and every other day for that matter, but as I looked at those pictures tonight I thanked God that my little angel was free from pain.  With every passing day I think I see the pictures that we have a little bit more clearly.  As my reality shifts, I see her weakened condition more readily.  I am thankful for what we had, thankful for her peace, but miserable with the knowledge that Katie’s story couldn’t have a different ending. 

(And before someone else says it, I know Katie’s story hasn’t ended since her legacy has and will live long beyond her last breath.  However, when I got up this Sunday morning I couldn’t dress my little Munchkin for church, or take her for a walk at the beach, or even feed her for that matter. )

The past couple of weeks have been quiet.  Life is progressing as we knew it would…or had to.  We are very excited to be parents again in December.  We are filled with hope for a healthy addition to our family.  We are grateful for the 6 amazing months we spent with our oldest child.  We continue to talk openly about Katie’s life.  So are things getting easier?  I think we understood the answer to that question very early on-  NO.  I miss Katie so much.  The only thing is, I am getting more accustomed to this pain, this void, this change.  I am different.  We are different.  It’s different. 

Much thanks to each of you for your continued support of our family.  Who knows when I’ll write again…maybe tomorrow…maybe next month.

Happy Birthday Sweet Pea

Dearest Katie,

It’s coming up to midnight, which means it’s almost May 19th, and I wanted to be the first to wish you a Happy Birthday! The first time I held you I promised you that I’d always do my best to protect you, teach you, and be truthful to you. As it turns out, protecting you was difficult, you taught me more than I could ever teach you, but I have been able to be honest with you. And speaking honestly, I never thought I’d be sitting here tonight, alone, thinking about what might have been, wondering how your personality would have evolved. Daily I wonder how you’d have grown since we last saw each other. I envision you crawling down the hallway, giggling, Mommy chasing behind you. And while we never were able to share these moments, I hope you feel that type of happiness as you rest peacefully tonight.

This weekend someone told me that “enough was a little more than what we currently have.” I think that’s true, because I don’t think I could ever get enough of you. While I have a lifetime of memories from the time we spent together, I always want more. Now that I have to settle for memories, I can never get enough of those either. And Munchkin, the best part…whether it’s a thought of a moment we shared or a mention of your name, my first reaction is always a smile. Sure, I get very sad. I miss you, and I always will miss you, but I would much rather bask in the warm memories of what we had instead of the cold thoughts of why our time was cut so short.

I suppose it all comes down to want and need. As a father, all I ever needed was for you to be safe, happy, and free from pain. I truly believe that on the eve of your first birthday you are as safe as you could be, as happy as is heavenly possible, and free from all of the physical burdens that challenged you while you were with us. So my needs as a father have been met. My tears and sadness are for my wants. I wanted to help create your safety, share in your happiness, and protect you from pain. Now, I just have to settle for the knowledge that you are getting everything you ever needed or wanted. My role is to be thankful that my daughter, my angel, is getting what she deserves.

During many of your tough days I  told you to “just do your best” and that we would understand if you had to let go. I never tried to put pressure on you to serve my wants. Tonight, that changes. Tomorrow, you are going to be a big girl, 1 year old, and I need you to do me a special favor. In December you will become a big sister, and I want you to do everything you can to look over your little brother or sister. I know you will still be a great big sister. You may not be here to play your part, but I know you will support and care for your new family member with the same sweet spirit that you lived. I need you to know this tonight- while you may not be here in body; you are and always will be here in spirit. We carry your beautiful memory in our hearts and we will share our fondest memories of you with our next gift from God.

Happy Birthday Katie. Mommy and Daddy love you….inside, outside, upside down.

You’re my hero.

6 months

This is one of my favorite pictures.  It was the morning of Katie’s church Christening (Vickie and I had no idea there was a picture being taken, but our little Diva was posing away!).   I certainly knew then that we had to take advantage of every moment together, but I never thought that I’d be sitting here tonight marking the 6th month since my daughter passed away.

Today was made tolerable by staying close to my wife and keeping busy.  However, as day turned into night, my emotions became more difficult to cope with.  As my wife went off to bed, there was only one thing for me to do…I grabbed my ball and my ipod and off I went to a floodlit court.  23 years since I first played the game and still a simple game of basketball can provide comfort.  Sometimes solitude is all you need to gain the strength to move on…

Tomorrow is Mother’s Day (almost today).  I can’t go into the depths of how it upsets me to know that Vickie won’t be able to celebrate the day with Katie.  I just got back from my hoop-therapy, and I don’t want all of the work to be undone.  Just know that tomorrow is Mother’s Day.  Vickie was, is, and always will be a mother.  She is the mother of my daughter, and a wonderful mother at that.  To this day Vickie is as much a mother as she was when Katie was here.  I know she still thinks about her baby first.  I know she’d sacrifice anything for our daughter.  Vickie is a mother.  Tomorrow is her day.

Oh May oh May

(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!

how ’bout this for marketing!

Vickie and I know a couple of friends who’ve had kids in the last couple of months.  We’ve been struck by how different our experience was from a “typical” baby experience.  Strangely,  there were some difficult circumstances that we had to endure that made Katie a great baby to care for. 

At only 2 days old Katie was rushed to Yale.  For the next 3 weeks she lay in an adult bed, unclothed.  When we got her home, she wasn’t used to being held…or swaddled.  While we think she really liked both, she didn’t need them.  She was so content all of the time, and I can’t help but feel that her sense of satisfaction was a function of her difficult stay in the hospital.  Being free to move, unincumbered, with the distinct possibility of being held and cared for made her so happy. 

So there you have it-  HLHS helped make Katie so peaceful.  Who knew that there’d be an upside.  It might be a stretch, but it’s a truthful spin on a heinous situation.  I suppose we have to see the positive in our situation…I think fellow HLHS parents might chuckle, others will just continue to think I’m a little crazy- hahaha.

Feel the burn

Anyone who enjoys working out or exercising knows about the “good kind of pain.”  You are at the pinnacle of a great workout, you’re breathing hard, and the burn excites you.  When you are out of shape, tired, or not in the mood, that same burn is the most vile and miserable feeling known to the exercising man.  Life in mourning is the same.  This week has been filled with the “good kind of pain.”  Katie’s absence is still difficult to come to terms with, but instead of anger or sadness, this week I’ve felt great pride in the life my daughter lived, the impact that she had, the legacy that she left, and the freedom she now feels from suffering. 

As I travelled the country this week I saw people of all shapes and sizes.  As I travelled the country this week I saw Katie in all things beautiful.  I feel like I met more Katie’s (literally), saw more beautiful little children, and interacted with more genuinely nice people than I ordinarily do.  I still wish my roadtrip this week was a time where I was itching to get home to my 11 month old daughter, but it wasn’t, and it’s not going to be.   Thankfully, the absence of Katie in body did not impact the presence of Katie in spirit. 

My peaceful week was capped off by a moving experience at church tonight.  I literally felt like Katie was with me.  I refuse to bring religion into this forum.  I have my thoughts and you have yours- my aim is not to be devisive.  All I know is that this weekend I am celebrating Easter (Orthodox…remember!), and the events in the church have never made more sense or resonated so much. 

A couple of weeks back I remember thinking about Katie’s loss as “our little tragedy.”  While it has changed my world, I don’t want to selfishly use the events of my life to dictate my relationships with others.  I speak of Katie freely, but I don’t want to use our loss as a source of conversation or sympathy.  Regardless, I feel that my newfound recognition that this is our tragedy has made it easier.  We ALL will come face to face with tragedy.  We ALL can choose how we want to cope with the situations that we are placed into.  All I know is that the sun will come up tomorrow.  I am going to be thankful for that fact.  I am going to live life to the fullest, with a smile on my face, and my munchkin in my heart.

muddled…

Thursday personified a day of muddled emotions.  It was 5 months since Katie passed away.  It was the day that Rudy finally got to go home from the hospital.  It was the day that Jack has his 3rd surgery.  I can’t even begin to describe the range of feelings that I had.  I was desperately missing my little girl.  I was celebrating Rudy’s major accomplishments.  I was both nervous and excited for the journey little Jack was beginning. 

Fast forward to Saturday.  Rudy is still at home with his family.  Jack is recovering from his surgery with style and grace.  And us, well, we’re learning to adjust to life without Katie.  One of the predominant but not particularly valuable thoughts that has been sidetracking me lately is the notion that in a couple of weeks my Munchkin will have been gone longer than she was here.  For no valid reason, I have thought about that day a significant amount.  I don’t know why.  I just don’t like that reality. 

The other thought that made me chuckle today was the rant I used to go on with my team all year long.  I used to tell them that I thought kids from Milford were soft.  The team I coach is filled with polite, well-rounded young men who their parents should be very proud of.  However, as basketball players they sometimes lacked the fight and conviction that I would have liked to see from them.  I had this whole theory that middle class children are so sensitized to “being nice” and “playing nice” that they didn’t know how to adjust to  the competitive environment of an athletic arena.  Jack F. is showing me that kids from Milford ARE as tough as nails.  They can still be polite and play nice.  In his case, they can even be as cute as could be, but the determination that this little boy has is remarkable.  Two days after surgery he is sitting in a chair drinking juice.  He is saying please and thank you to his caregivers.  Give me a break!  He is another true tough guy with a million dollar smile and a sparkle is his eyes.

This world is a mess.  We have unreasonable wars, unspeakable inequities, and unjustifiable stresses.  There are saddening events that make us all question humanity…even perhaps question the greater good that exists.  Then there are the stories of Rudy’s arrival home and Jack’s response to his surgery, and hope is restored.  I don’t want to be a heart dad.  I never wanted Katie to be a CHD kid.  I didn’t want labels and stigmas.  Now, instead of negative connotations I see all of these children as sources of inspiration.  I see their families as friends, allies, an people who just might understand me. 

One thing is for certain…the world continues to turn and we never know which direction it’s going to take us! 

Happy Easter everyone.

Pray for my tough friends!

I am so happy tonight.  I am furiously angry tonight.

Rudy went home today.  After 6 long, hard months Rudy took his first drive home to be with his parents and siblings.  I am so happy for Rudy and the entire family.  We are all too familiar with the long days at the hospital, the frustration of the unknown, and the burning desire for normalcy.  We also have incredible memories of the day we took our daughter home for the first time…and the second time for that matter.  We hope the entire family spends their first of many nights peacefully tucked in their own beds.

On Thursday, another couragious and incredibly cute friend of ours undergoes the third and final step of the 3 stage series of operations to treat HLHS.  While we pray and hope for Jack as he embarks on this journey, we hope that our short term trepidation creates long term peace and happiness for all of Jack’s family.  He is a bright eyed little boy who is on the cusp of a major milestone.  Jack’s family was a major source of support, encouragement, and motivation during Katie’s struggle. 

Please keep Rudy and Jack in your thoughts and prayers!

I feel incredible joy for Rudy, Jack and their respective families.  While I’m sure there are nerves and fears, they are currently moving toward a more positive tomorrow.  My anger tonight is with the fact that we all need to show such thanks for a 6 month old to go home, and for a 2 year old to be undergoing his 3rd surgery.  In what deranged world is this our normality?  I remember my childhood.  Friends, sports, playing in the dirt…life of a child is supposed to be easy.  Children are supposed to be carefree.  While I am annoyed by the trials and tribulations that both Jack and Rudy have and will endure, I hope that their future is filled with kid-like behavior.  Keep on truckin’.  I continue to be amazed by the courage and precociousness of these young ones.  On the surface they look like any other child, but I truly believe that when you look into the eyes of these children you see a maturity that is unmistakable. 

Vickie, Me and Jack at our Toy Drive in December!

Uncle Mark’s Memoir

I have said many times that in a strange way the trials and tribulations of Katie’s life were simplest for Vickie and me.  We were so immersed in the moment and so well informed about Katie’s status that we didn’t always feel the same pain, the same confusion, or even the same sadness that some of you did.  Tonight I want to share a memoir of Katie’s 13 year old uncle, Mark.  He is a caring and quiet young man, but through this memoir he exposed his feelings and impression of his neice’s life.  He was a great uncle…

The year 2008 is a year that I will never forget. It was filled with great happiness, but also the deepest sorrow that no one should have to face. It was in 2008 that I learned that bad things really do happen to good people. It was the year that my niece, Katie, was born, and it was also the year she died.

My sister, Vickie, and her husband, Alan, were expecting their first child. We didn’t know whether it would be a boy or a girl because they didn’t really want to know ahead of time. We found out on May19, 2008, when Katherine Alexa Manning was born. The whole family went to the hospital to see Katie. She was a pretty baby that everyone took turns holding. It was pretty obvious that everyone was really happy. She was my parents’ first grandchild, and my first niece.

I didn’t understand what the big deal was because she was only a baby.  It was really weird thinking of myself as an uncle considering I was only 12. I watched everyone else hold her, but I didn’t, because I had never held a baby before, and I thought I would wait until there weren’t so many people around. Little did I know that I wouldn’t be able to ever hold her.

Two days after she was born, Katie was diagnosed with HLHS, which pretty much means she was born with half a heart. The doctors told us that she needed surgery, and she would have to go to Yale New Haven Children’s Hospital. It was clear that this was a major issue for her and for the family. That day, I never knew if she was going to make it. I was really nervous that she was going to die.

The surgery she had to have was a success and Katie was able to come home after three weeks. We knew that she would have to have two more surgeries in the next couple of years, but for now she was here to stay. We had to be really careful around her because she couldn’t get a fever. If she got a fever before the next two surgeries her heart wouldn’t be able to take it. That was why we couldn’t hold her.  We could play with her and touch her, but only after we had washed our hands and used Purell.

I can remember that during summer vacation we would go to Vickie’s everyday so Mom could help her. My sister and I would come just to see Katie. Sometimes I would get sad because I wasn’t able to hold her because of her condition. There were always good times though, when we were around her. I can always remember how beautiful she looked no matter what her condition was. I can remember her smile whenever something was going really well or when we needed to get cheered up. She always knew the mood that everyone was in because if we were happy she would start to smile, and if she knew something was wrong she would just lie there quietly and wait until it was over.

Whenever we would go to a new place with her, she would get amazed. She would start to look all over the place oblivious to anything else that might be going on. One thing that I thought was very special about her was her hair. Her hair was the softest thing you would probably ever touch and it always made me feel like the world was all right.

Katie brought my family together more than anything else ever had. Whether she was safe at home or was getting out of a surgery and had to stay in the hospital, my family would always come together to see her or make sure she was ok. We also had to help Vickie and Alan because they spent so much time in the hospital when Katie was there.  My little sister and I would help them with yard work mostly.

Even though there were plenty of good times, it doesn’t mean that there weren’t bad times too. There were some times when she would have to go to the hospital because something would happen that was very serious. During the last couple of weeks of her life, she was in the hospital. There were many times when we didn’t know if she would make it through the night. My family was always really worried about her, and there would be a lot of crying from everyone around. By this time she was barely hanging on to her life.  Katie died on November 9, 2008 in my sister’s arms.

When she died the funeral home was filled with a lot of people that didn’t even know her well. Many people followed her story about her life not by actually meeting her, but by reading my brother-in-law’s blog. Alan started it the day they took Katie to Yale and continues writing it even today.

Having had Katie in our lives has affected the way I view other people too. We had a fundraiser for Yale New Haven Children’s Hospital to collect toys for the kids who were in the hospital during Christmas. It was called “Stuff a Cruiser” and was held with the help of Milford Police Department. There were two police cars and we thought that we were only going to fill each one once, but we ended up filling each three times. The bottom of the storage truck was completely filled with toys when it was over.

Even though she might not be with us anymore, the memories always will be. Each person who ever met her, has their own story that they can tell people. That year I learned a lot about life that I wasn’t expecting to learn. I learned that life doesn’t always go as we planned. It’s amazing I learned it from this little girl.