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.

2nd post in one night…Pink Power

When you think of pink, what do you think of? Barbie? Breast Cancer Awareness?  For me, I think of Katie.  I have always been a guy willing to sport a little bit of pink.  I have donned a pink tie, worn a pink shirt.  However, since Katie’s passing pink has been far more symbolic.  I wear pink to remember my daughter (like I need a reminder), to honor her life. 

No matter how we tried to avoid the gender stereotyping, much of Katie’s clothing etc. was pink.  Babies features are so non-descript that they need their colors to designate gender.  I now wear more pink to keep that trend alive. At Katie’s wake I wore a pink tie to celebrate her life rather than mourn her passing.  Since then, it’s become more prevelent.  Last week in Ireland I bought two more pink ties to wear to work.  Today I wore a VERY pink sweater to work.  I may be pushing the envelope, but I don’t care.  When I wear pink, I feel better.  It’s funny how the littlest things can help you feel better…if a dash of pink can help, then pink it is I’ll wear!

no explanation…no warning

Left, right, left, right…I feel like we are getting back to normal, whatever that means.  I can say that I honestly do feel my smile getting a little bigger, and my laughter a little louder.  We are adjusting.  We have no choice.

That’s all well and good, but Sunday was the most emotional day I’ve had since Katie passed away.  It was the first time that I literally couldn’t curb or control my emotions.  It was overwhelming, slightly embarressing, and a reminder that we are far from being done with the emotions that we have to work through. 

At church on Sunday I started reliving fresh memories of Katie and her journey.  For some reason I was replaying Dr. Asnes’s diagnosis of Katie’s condition on the Wednesday after she was born.  I was thinking about how serious he was, how difficult it must have been for him to share the news with us.  I was also thinking about how little we understood at that moment. We knew it was all very serious, but the magnitude of the situation was lost on us.  I remember calling my parents, calling work, coordinating Paul’s flight out to be with us.  I hadn’t thought much about that day, that pivotal day. 

From there, I noticed a little girl sitting in front of us.  She was probably 2 years old- dark hair, big eyes, pleasant disposition, pig tails…it took everything in my power to make it through the service.  As the mass was coming to an end I was thinking to myself: ” I hope nobody passed away this week. I hope they don’t sing Memory Eternal.”  Memory Eternal is a beautiful, but haunting song that is sung after a member of our church passes away.  It is the song they sang at the end of Katie’s funeral.  It was the point at which the events of that day became overwhelming for me.  Low and behold, there was a passing in our church this week, and the person’s name was Katherine. 

It was just a series of coincidences that troubled my already weakened emotional state.  It was a tough day.  All I kept thinking all day was that it was Mother’s Day in Ireland.  My wife should have been celebrating.  Vickie deserves to celebrate two Mother’s Days.  Instead she got a weepy husband.  Some prize, huh?

As with other difficult days over the past couple of months, it came and it went.  The smile is still growing and the laugh is getting a little more heartfelt.  We are prepared for, but never fully anticipate the downturns like the one I had on Sunday.

not the full story

It’s 12:41am here in Ireland.  That means that it’s the 19th, and by date, our sweet Katie would have been 10 months old today.  She’d have finally reached double-digits.

This trip home has been especially important to Vickie and I since it’s our first trip to Ireland since Katie’s passing.  While I knew we had infinite support from friends and family here, what I failed to realize was probably the most obvious thing of all.  Almost all of the people here had never met our angel.  In some ways many of them have been cheated.  They suffered in our loss but never got to revel in the time we had with our daughter.  They prayed for us and they hoped for us, but they never got to see us as a family.

Going along with that, to not see us as a family is to not have seen my wife in all her glory.  Vickie is special, no doubt about it.  As I mentioned to someone the other night, she is an incredible pillar of strength.  We could all benefit from witnessing the unassuming way that she has great impact.  As we visited family all week, I felt like they were short-changed by not seeing Vickie the mother.  In social settings she is quiet and reserved, but with Katie is was incredible.  A natural.  A virtuoso.  A mother.  I wish that my family here got to witness Vickie’s love for Katie.  I wish that I got to see Vickie hold Katie one more time, and see the happiness etched on both of their faces.

It’s still not getting easier.  Sadly, I can admit that the pain is becoming a part of me.  It is part of who and what I am.  Sad? Maybe, but I couldn’t have it any other way.  Left, right, left, right…we continue to move forward, thankful for the time we had to share with our Munchkin, wishing that our time didn’t have to be so shortlived.

on point

I heard a quote last night that aptly summarized the last couple of months of my life. It was said that the difference between truth and fiction is that fiction needs to make sense.  It was in a movie- I chuckled out loud in the cinema because of how right it was (it wasn’t supposed to be funny).  What about the good guys winning? The happy ending?  The unexpected comeback?  We had all of the drama without the Hollywood ending.   Fiction!  Reality is such that we often find solace in escaping to the world of fiction.  Why become bogged down in the depths of real human emotion when we can have the release from fact…the release from life?

Speaking of fiction, I am on my own little escape and get away as I write.  This weekend Vickie and I travelled to Manchester, England to see Man United and Liverpool play.  While the result was far from what I would have wanted (ouch!), the weekend was amazing.  It was the happiest and most relaxed I’ve felt since Katie passed away.  I have lost the word perfect from my vocabulary, because I reserve that for time that Vickie and I spent with our daughter, but to escape with my wife, to unwind, to leave all the stress of reality behind…it felt great.

Interestingly. while I did get caught up in the game, and had my little bout of lambasting United’s underperforming pre-madonna’s, when the match was over, so was my frustration.  It’s a game.  It’s important to me, but it’s a game.  I wasn’t moody, or upset, or disappointed.  I wished my team had won, but I was on vacation with my wife, so to get over the trauma of the result, we soaked in a hot tub, ate a fantastic meal, and went to the movies.  Oh how you should have sympathy for me.

As with everything, the visit was tempered by the absense of Katie.  I went to Manchester for my first time last year with Paul.  Vickie was pregnant. I bought baby clothes for our budding United supporter.  I thought about the day I’d share that special place with him or her.  I shared it with Vickie yesterday.  We know that Katie was there.  You know that she was never far from our thoughts.  It was a great day, but like all happiness at the moment, it has a cloud of what might have been, or what should have been that limits the satisfaction levels.

Now, Vickie and I are in Cork.  We’re looking forward to a relaxing week.  Here’s to a week, month and even year where the lines between reality and fiction are blurred (I’m not greedy- I don’t need total fiction!).

Purpose

Every season I harp on my players-  “play with a purpose.”  I get so annoyed by useless moves on the basketball court.  If you’re going to do something, do it right.  Cut out the excess and cut to the chase.  I think it helps kids who are learning any sport in an age when show-boating and “one-up-manship” are so prevelant.  However, beyond the sports arena, PURPOSE has always mattered greately to me.  I find it difficult being lazy.  You have one life, and I appreciate that.  Add to that this innate guilt that I suffer with and you find someone that feels the need to “get something accomplished” every day.  All in all, this trait has stood to me as I made my way through school and started a career.  Little under a year ago, Katie changed my sense of purpose forever.

The moment my daughter was born, my sense of purpose changed from DOING to BEING.  I didn’t have to get things done.  Simply being with my daughter gave me purpose.  Obviously, Katie’s condition heightened our sense of purpose, but even those sleepy weekends at home were filled with feelings of accomplishment and satisfaction.  Oftentimes, I would get nothing real done for the day, but I’d climb into bed feeling as though I had served a great purpose.  I was free from guilt, and filled with love. 

So, pre-Katie purpose was a sense of accomplishment.  During Katie’s life purpose was a sense of being.  Now?  Now, purpose is complicated.  We are trying everything to have a purpose and lead a meaningful life, but we miss the simplicity and completeness of purpose we had.  I won’t say that I feel as though I am wasting my time, because I know I’m not, but the absence of the “Katie-Factor” makes everything else seem slightly trivial. 

The one lesson I have learned is that I can achieve a feeling of purpose by doing little, but feeling a lot.  This is not a man’s rationalization of laziness.  My guilt still drives me to activity (my goood old guilt, coupled with a sense of obligation to my angel who I know is looking on), but the learning I’ve had this year have helped me look for the emotional accomplishment more than the tangible accomplishment.  FEELING good, FEELING a sense of purpose, is more important than playing or living with a purpose. 

Katie, thank you again for yet another lesson….I suppose this is lesson # 17,257 or something like that.  I can only imagine what you’ve had taught us all if you just had a little more time!

This picture epitomizes my feeling of purpose during Katie’s life-  simple!

 

Confession…

I have lived so much, learned so much, and felt so much in the past year.  As can be seen from my ramblings here, it doesn’t all fit together nicely.  The depth and intensity of emotion manifests itself in many different ways.  From driving anger to weakened dismissal, and uncontrolled laughter to reminiscent smirks, the mood swings can sometimes be severe and are always unexpected. 

This week has been difficult.  I suppose I have reached another stage in the grieving process.  I am more firmly placing Katie’s struggle in a broader context.  I see more and more people with whom I share this odd connection.  It is sad, but unlike other times when you have a bond or connection with someone, it isn’t at all reassuring.  There is no solace in knowing you are not alone.  There is comfort knowing that other people understand how you feel, but in most ways, I wish I was alone with these feelings.  I wish no other family had to feel what we feel.  Unfortunately, far too many people do know exactly how we feel. 

Tonight though, I want to talk about Katie, not me, not my feelings, not my self-pity, but my amazing little daughter.  You’ve all seen the pictures and heard the stories about how angelic she was.  What you may not know is that my little Munchkin had a little bit more Irish in her than most realized-  she had a fierce temper.  I loved it!  When Katie got angry, she got ANGRY!  In some strange way, I feel like her “strong willed” nature and fiery personality allowed her to battle her ailments for as long as she did.  I just loved looking on in amazement.   Every time Katie would “express her feelings” I would chuckle, but it wasn’t a normal chuckle of an approving father.  It was half pride that I could see myself in my daughter, and it was half extreme fear for what she’d be like when she got older.  I have said before that Katie died perfect.  She commited no sins, offended nobody, and simply lived an innocent life.  Like so many athlete’s or musicians strive to do, Katie went out on top, perfectly placed in the memory of all who met her.  Given her temper, it would only have been a short time before she’d have started to erode her pristine image…my fiesty little monster.

This picture is a slight glimpse of Katie delving into her heritage, her gene pool, to tap her inner resolve (some call it stubborn, I just think that’s a misguided summary of a positive personality trait- haha).  I miss my Munchkin, lock, stock, and barrel, or should I say, cute, adorable, and a little sassy.

I should be working, but…

I don’t want to be consumed by the condition that has changed my life.  I don’t want to get wrapped up in reliving the emotions that we just got through feeling first hand, but today, there is another family that needs your prayers.  http://thegledhillfamily.blogspot.com

Another home has been impacted.  Another family has been tested.  Another beautiful little girl is unfairly being taken.  Please pray for Gracie’s family.  We are all too familiar with what they are experiencing.  It just doesn’t seem right.  Nobody can make sense of this to me.

My hope is that the happy party rages on in heaven as we come to terms with our respective losses on earth.  Katie, sweetie, look after little Gracie.

2nd post of the evening

no clue what was to come- May 19, 2008

I figured…it’s snowing outside.  So peaceful, so quiet…like this picture.  I love this picture. Katie was so precious, like I think she was at all times.  Vickie was so overcome with emotion.  And me?  Well, I had a LOT more hair.  I think my grin tells the rest of the story. 

Soon my Livestrong band was replaced with a Little-Hearts band, my head was shaved for the mission ahead (or to hide the rapid loss) and the ecstacy was challenged.

One thing remained-  Katie was, and still is, precious!

There’s a place for everything

Dealing with the death of your daughter is unimaginable.  Seeing and hearing about other little babies who have to struggle the same way justs reopens the wounds.  I hate HLHS.  I hate the fact that my heroic daughter only had 1/2 a heart.  How can a girl with such courage be deemed to have a weak heart?  The anger that burns inside of me is real.  The anger that I feel though is changing, sharpening, and finding a target.  This cannot be in vain.  And while I don’t have the skills nor resources to figure out the medical intricacies of HLHS, I can help do some small things to palleatively care for the parents who are caring for their children in the best way they know how. 

Kisses from Katie is dominating my thoughts.  We’ve purposely held back our urges to get the organization up and active too early.  We needed to grieve.  We needed to have time with our emotions.  Now we are ready.  Now we are focused.  This isn’t the forum for me to speak of the details of Kisses from Katie, but just know that this organization will be big-  it has to be.  If we are to appropriately honor our first daughter, Kisses from Katie must impact many lives, create endless smiles, and teach people things that they never thought they’d know.  Katie did all of that for me, and now I hope to help do that for others. 

So I suppose my anger/ despair/ sadness has a place.  If harnessed appropriately, it will be the catalyst that helps drive our new organization.