H is for... Heart

There's just something special about
a father's love for his daughter

(Cont. from Saturday)

... so we'd just left the Hospital in Boise and returned to school 300 miles away in Moscow ID.  All seemed to be improving with Kanani, true she wasn't growing much, and she still didn't eat anything except what went through her NG-tube, but she seemed happy, and we were assured by the nurses that she would probably outgrow all of the maladies, so I didn't worry much.

I remember vividly how it blew my mind so completely when she started playing with a toy for the first time. It was just a little mirror with a roller toy underneath that, when you touched it, played music and had lights that lit up around the mirror. At first, when she'd trigger it, I thought she was just stretching her arm, but after doing it a few times in a row my wife and I watched her do it deliberately.. I remember the incredible sense of pride and wonder at realizing that she was doing that on her own.. that she liked the music and lights.. that she had her own thoughts and enjoyed something.. just simply that she was an independent person, even though only around 2-3 months old at that point.  The thought that she had her own thoughts inside that tiny little head just blew me away.

I remember just being flooded with such a sensation of love for this little person that was still only around 8 lbs at 4 months of age.

After Kanani had been on the feeding tube for about 4 months the Doctors decided we should just do a G-tube directly through her stomach.. it was less invasive than the NG-tube, and would make it easier for her to learn to eat.. so my wife and she went back to Boise for a quick little procedure.

.. however if you read my post from Saturday you would have read that when it comes to my daughter, nothing ever goes as expected...

.. they left Moscow Idaho in November, for what was supposed to be a quick weekend trip.. and ended up not returning for about a year and a half.

There were complications with Kanani's minor surgery, again, and she ended up staying in the hospital not overnight.. but for 5 of the next 6 months, most of that in the Pediatric ICU, including around 2 months on life support, and one incident where she stopped breathing and required CPR.

During that time Kanani had roughly half a dozen operations, culminating in open heart surgery. I remember every detail of the morning when I carried her down to the surgical room and handed her to a nurse, not knowing if I'd ever get the chance to hold her again. She was around 8 months old, and clung to me as we approached the nurse. That was still the hardest thing I've ever done.. hand over my baby to a nurse and saying goodbye, without knowing if I'd ever again see those beautiful eyes look searchingly into mine.. the memory still brings me to tears.

I've glossed over much of what we went through during those 6 months in Boise.. I withdrew from Law School in early December, right when it appeared she'd be in the Hospital for a little while so that I could be there with her and my wife during this ordeal. We bounced around from family member to family member during this time, staying a month or two here, a month or two there.. before we finally got an apartment in Boise once Kanani was released in Mid-May of 2002. We were counseled by our Doctors to be ready for her to die at any time because she was in congestive heart failure and had picked up a host of colds and infections from her stay in the hospital and her compromised immune system because of her diagnosis. They kept pushing her heart surgery back and back because they thought she was just too sick to survive the procedure, but eventually, they said, they'd reach a point where they'd have to just proceed regardless of her health because her heart was that bad.. and that occurred in April of 2002.

Amazing to think that was a decade ago.

The surgery lasted for just over 5 hours, which was a little longer than was expected, but it was the first time when everything went better than expected. We were surrounded by family and had many, many prayers offered on our behalf during that time. She emerged from the operation a new child. She suddenly had the energy to actually cry (a mixed blessing), to sit up, to play.. before she'd been a quiet observer.. now she was a participant in her life. The change was dramatic and wonderful. Within months she was babbling, then crawling and finally walking at around 2 years old.  Each milestone was hard fought, but that just made them all the more meaningful.

I returned to finish Law School the next fall, leaving my wife and daughter in Boise where they were close to her Doctors and the Hospital.  I'd drive or fly to Boise as often as I could over the next 2 years to be with them.. spending summers doing externships in Boise and then returning once again to Moscow until I graduated in May of 2004.

Our second child was born in December of 2003 on the Saturday after my last final exam for the semester, so I was able to be there for his birth. I remember packing my car the night before, getting up and taking the exam from 8 until noon, and then turning in the exam and leaving immediately for Boise, and then going to the Hospital the next morning around 5am for my oldest boy's birth.

Now.. 3 more boys later, Kanani is still my princess but we've added 4 princes to the family. I love my boys, all of them.. they're the best things I'll ever do in my life.

  • My oldest son is the kind of kid I always wanted as my best friend when I was younger, he's the All-American kid, handsome, good at sports, a great friend, and the best big-brother I've ever seen.. our youngest child adores him to the point of running to him rather than my wife or me when he awakes in the morning. He's the coolest kid I've ever known, and he's a great example for his brothers. 
  • My second  is the absolute sweetest boy in the world with an artists soul and a brilliant mind. He is astonishingly mature for being nearly 6, and is so much smarter than I was at that age it's unnerving. Not as athletic as his older brother yet, he's already reading and can beat me at video games to boot. He has the brightest eyes I've ever seen, and has the uncanny ability to understand the fundamental truth of the world around him at a level that amazes and intimidates me a little. It's like being the father of a boy with an old buddhist munk's soul residing in his body. At any moment I expect him to espouse Eastern Philosophy and ask me if I know why the wind sings so softly through the early spring tree tops.
  • My third son is a 4-year old absolute terror with no fear and the softest heart in the world. He will run full tilt into a wall and bounce off, with blood dripping down his face, laughing his head off all the while.. but if I tell him I'm very disappointed that he colored on the wall and look cross, he'll break down and weep the biggest, fattest tears you've ever seen.. but he also bounces back faster than any of our other children with only a hug from his daddy. I've never seen anyone switch from pained tears to joyful laughs so quickly, and so honestly. He is utterly without guile and loves life with a passion I wish I could emulate even if only fractionally.
  • My youngest boy, is only a year and already a born performer. At this young age, he mugs for his siblings and lights up at the sound of their laughter. He was climbing up and down the stairs by himself, to his siblings delight, but not with his parent's permission before he turned a year, all in an attempt to be in the middle of the action, which is wherever his brothers are. He's a typical youngest child.. a total ham who will do anything for a laugh and the spotlight, and that comes from another youngest sibling (me) who is still to this day, a total ham. He has also never had a bad day and smiles as much as he breathes.
Watching my sons give me the more pleasure than anything in my world. I know all too well how incredibly blessed I am, and am constantly amazed that I could have had a hand in creating these human beings who have so much potential and are already such wonderful people... they're the things I am most proud of in my life, an accomplishment I'll never top.. they'll carry on my name when I leave this life, and they'll each make a mark on this world greater than any footprint I could ever dream of leaving..

Kanani, January of 2011 visiting Mom
and her newest baby brother.
.. but it is my daughter that owns my very soul. My heart was lost the first moment she first gripped my finger in her tiny hand. She is my princess, she is my moral compass, she is my touchstone of all that is good and beautiful in the universe, and she is, without question, the purpose why I was placed on this earth. My entire reason for being is to protect her and see that she smiles every day.

That's not to say her life is easy now. She still has some medical issues, and probably will all her life. She struggles with learning and comprehending abstract concepts and doesn't understand all the intricacies of social interaction, all these struggles, and more are a part of her diagnosis of DiGeorge Syndrome/VCFS, but with therapy and lots of hard work, and with the help of her loving and protective brothers and parents, she has and continues to blossom.

She truly is 'the beautiful one' to her father.


  1. Kevin, what a touching story. Sounds like Kanani has an incredible will to live and two parents who were determined to be sure she her will had everything it needed to be fulfilled.

    What a lovely family you've been blessed with.

    I understand that whole living in the middle of nowhere. I used to live in Plummer (well, actually 3 miles out on 5 (heading towards Lake Chatolet and St Maries) and then 3 miles straight up). And here in Missouri? I live out beyond the back 40, lol! But it's all good.


  2. What an emotional roller coaster you and your wife and family have been through. What a great daughter and lovely sons you have.

  3. I'm so happy things turned out well for your daughter. What a crazy emotion experience. You are amazing for surviving. Wishing joy to your family.

  4. This might be the sweetest post I've ever read. It makes me want to call my dad and tell him I love him. I'm so glad your daughter has triumphed over the hard hand she was dealt.

  5. What a beautiful tribute and description of your children...you are truly blessed! Enjoy the challenge...

  6. a beautiful post about a beautiful child. So glad things turned out okay for your daughter.
    Great A-Z post!

  7. I can't imagine how hard it must have been to go through all those painful years. I'm the proud mother of two girls, 5 and7, who are my live and I don't know how I would cope with such a thing. I studied medicine before deciding to write my first novel and I always say to everyone who wants to hear me that I discovered the world through science, found my love through writing, but my true calling in life I found out when my first born cuddled in my arms.

    Beautiful post!
    From Diary of a Writer in Progress.

  8. What a wonderful post, and I read "G" too to get the beginning of the story. Sounds like an active life for you! I'm trying to visit all the A-Z Challenge Blogs this month.

  9. Thanks for sharing. Really enjoyed G and H. Sounds like you have a great bunch of kids and your house is a not stop action novel.
    Best to you in your writing and A-Zing.

  10. A heart wrenching post. II feel really bad when I see little children suffering and I am glad she is healthy, happy and enjoying each new day.


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