Tuesday, September 24, 2013

Harlie's Birthday Eve

Ahhhh, Harlie's birthday is tomorrow....  Such a difficult set of emotions.  It shouldn't be like this. And it shouldn't have been like this...


Do you see my face?  That is what heartbreak, confusion, fear and utter devastation looks like. When I think about all the thoughts in my head at that moment, I don't know how I survived.  How did I put one foot in front of the other?  Day after day? Month after month?  Year after year?!

Combine congenital heart defects, lung defects and the inability to breathe through your mouth and nose and you get a blue baby.


Beautiful, wasn't she?  Go on ahead and admit it.  She would've scared you, too.  And, for the record, I don't mean scary in looks, although that might be somewhat true, too (in this picture!).  I mean scary as in how scary it is to be responsible for a medically complex and fragile infant.

They took her away just seconds later and I couldn't hold her again until she was three weeks old.  She looked better a few days later...you know after heart surgery.

At four days old (right after her first heart surgery).

This is why we couldn't hold her.  The ET tube is what
was keeping her breathing.
At six months old, after her second heart surgery.
What? This isn't what every baby album looks like?

Ahhh, that's better.  At one year old.
Can you tell I'm a bit grumpy today?

I just keep thinking of what it was like exactly seven years ago at this moment.  It's 5:30 pm as I'm writing this.

We had checked into the hospital after the 1 o'clock Steelers football game versus the Cincinnati Bengals.  The Steelers lost.  Typical.  We went to a bar in DC to watch it to try to give our minds a bit of break from the chaos that was about to begin.  I couldn't eat.  I wasn't hungry.

They started all the stuff to induce labor.  It was a long night.  I didn't want to have her.  I wanted her to stay where she was - safe and sound.  I knew her life would be hard, however long it lasted.

What a horrible thought the eve before giving birth!  I knew her life would be hard, however long it lasted.

I think that's why I'm grumpy.  So many wonderful experiences were taken away from us.  From her.  Replaced with a life full of hospitals, ambulances, medical supplies, doctors, nurses, surgeries, doctor's appointments, time spent in waiting rooms, traveling all over for medical care, medical supplies, suctioning, oxygen tanks, breathing treatments, infections, antibiotics, tube feedings, home health nursing, physical therapy, speech therapy, feeding therapy, stitches, bruises, recoveries, medical supplies, communication devices, trach changes, suctioning, years with no vacations, no beaches, no pools, no sleep, no sound, no voice, no words.  And did I mention medical supplies? Or suctioning?

Thirty freaking nine surgeries and seven years later, she's writing her name on her homework.

Today - September 24, 2013
She has homework.  And she's writing her name on it!


She is amazing.

I honestly don't know how we have made it.  That first year was a doozy.  But we have.  We have survived.  All of us.  And we continue to, every single day.  How have I not lost it?  How do I not have an ulcer?  How have Tom and I survived?  How did we have another child after her?  I don't know.  It's really crazy to think back on the last seven years and know that we are "fine" most of the time.  Heck, I'd even say happy.  Okay, maybe I have lost it.

The love I have for this child is unmatchable.


The love for her is different.  To watch your child go through as much as she has gone through changes you.  It changes your relationship.  To love - through the fear of losing her - is indescribable.  To love her is to feel pain.  And you have to be accepting of that.  There are no barriers in the way of my love for Murphy and Cooper.  I can love them openly and securely.  I can dream about their future and know that the odds are in their favor.  It is different.

I wish I could be one of those parents who says "I wouldn't have it any other way."  But, that is simply not true.  And, personally, I think those parents are crazy.  I would wave a magic wand without hesitation if I could.  There are no doubts about that.

There is a lot going on in our lives right now.  After a lot of thought, we decided to make some changes in our home nursing.  Terri is no longer with us.  And Brandy is coming "back." She never left, but now she will go with Harlie to school a couple/few days a week.  And we have a new nurse starting next week who will work part-time to share the school days with Brandy.  Home nursing is a difficult thing.  It is not something you want to need.  And need it, we do.  There is little privacy, a lot of trust, and I'm betting there's a lot of judgment going on.  So, making a change is never easy.  No matter the circumstances.  Terri was with us for two years.  I would give anything to have a conversation with Harlie about it.  To see how she feels and what questions she must have.  But, at least I know that she loves Brandy and what a great day for her to take her to school for the first time in two years - her birthday!

Huh, I feel less grumpy now.  Sometimes I guess you need to embrace the bitterness, the anger and the grief.  And then go tell a bunch of people, whom you may or may not know, all your inner most thoughts.

Happy Birthday, Harlie.  I am grateful for every day I get to see you smile.

Thank you for the love, the support and the friendship.
~Christy xo

14 comments:

Kelly said...

Yes, I just did that. And now I feel like an *sshole for feeling crazy and venting after reading your post. Happy birthday Harlie...you got the best present ever...your mom.
Xok

Donna said...

Awesome post Christy. The part about the love being different and how it changes you.... very well said. Happy birthday Harlie...you have so many gifts you share with all of us every day. Much love to you on your 7th birthday. Xoxo

Kristen said...

Christy, that was beautiful. Honest, and beautiful. That you for sharing those inner most thoughts. You give new meaning to the word "parent." You are AMAZING and I knew that from the first day I met you, even before Harlie was born. And for the record, I remember Harlie's birthday vividly. I remember he Baptism in the Chapel at Children's. I remember so many intense and honest conversations. And thought it all, I remember how much you and Tomloved her fiercely. You give her the best present every day: your fully devoted selfs. HAPPY BIRTHDAY, HARLIE! Your monks right. You are amazing! XOXO

Kristen said...

Christy, that was beautiful. Honest, and beautiful. That you for sharing those inner most thoughts. You give new meaning to the word "parent." You are AMAZING and I knew that from the first day I met you, even before Harlie was born. And for the record, I remember Harlie's birthday vividly. I remember he Baptism in the Chapel at Children's. I remember so many intense and honest conversations. And thought it all, I remember how much you and Tomloved her fiercely. You give her the best present every day: your fully devoted selfs. HAPPY BIRTHDAY, HARLIE! Your monks right. You are amazing! XOXO

Kristen said...

Sorry for all the typos above....darn iPad!

Kristen said...

Ok. The last sentence should say your MOM is right....not monk! Geez!

Susan said...

Oh Christy. I've felt so many of those feelings. But I do think when all is said and done our children will still be glad they got their chance at life, despite it having been difficult. I believe that wholely. Truly. I know that different love you have for Harlie is special in a way that is really difficult to put into words it runs so very deep.
It's okay to love someone that much and at the same time wish things were easier. For everyone's sake.

Actually I think Harlie was beautiful even blue. Really. And she looks so pretty and pink after just having had heart surgery. She's a fighter like no other. I'm sure you are so proud of her for so many reasons. Every day and especially on her birthday! Happy Birthday Harlie! Give her hugs and kisses from me please.

B-Mama said...

Tears here. And love. And admiration. This was so well-written--I drank in your words and felt them in my own heart. Thanks for teaching me about devotion and persistence; about resilience and hope. Harlie was an angel baby entrusted to the most wonderful mother. You've done so well. xox

Sandy said...

Harlie deserves the best and she has it with you as her mom and Tom and the boys!! Keep your head up. You don't know how amazing you are!!

katie penycate said...

good for you harlie, i remeber hannah and her f=were just a few days apart, i wish hannah was still here, so they could play. blessings to you christi, its gunna be a rough weekend, if you could say a prayer on saturday for hannah and i as i will be going to see her, she would of been 8 this year! Well done harlie, miricle you really are!!!

Mandy Lynn Denaux said...

You are amazing. I know you don't always feel that way, but the honesty, beauty and grace with which you write (and no doubt live) is simply amazing. How you've managed to keep it together -- your marriage, your family, yourself -- is absolutely inspiring. Happy Birthday to Harlie!

gba_gf @ Neurosis of the Stay at Home Marathoner said...

The honesty here is a reflection on your courage and beauty. What a lucky baby, to have you as a mother. What a lucky husband, to have you as the mother to his children.

And lucky us, to have you in our lives.

Happy Birthday Harlie!

Anonymous said...

You are amazing and strong like Harlie. Prayers.

Anonymous said...

I've only been reading this for a couple of months. Each time with tears. It took me a while to reach the perspective from this poor little girl to this girl is amazing. Seven years at a 95 % climb! The optimism with which she sees the world could truly change it. The strength her parents present in front of her is awe-inspiring! Seven years, Harlie, I ran three miles up a mountain a couple weeks ago and wanted to quit. You've been doing that for seven years! I have one other hero, I lost him in Afghanistan, he's provided me with the strength I've lacked at times. I hold you up next to him when I need to dig down, you epitomize strength, perseverance and most of all optimism, Harlie. It breaks my heart that you have to endure this, but you've shown just how strong you are each time. Keep smiling, Harlie!