A Year (and a Lifetime) Ago

On June 12, 2012, in Julia's Journey, Life, Personal, by Chris

Tonight I was reminded again that sometimes in the crush of the day to day, I need to remember to sit and be grateful every now and again.

It started innocently enough. I was dealing with a typical “first world” problem and rearranging some stuff in our refrigerator so that I could somehow wedge more stuff in. I was in the middle of marveling over how many different mustards we had when my eye was caught by a small brown bottle in one of those shelves in the refrigerator door.

It was the Enalapril – a medicine that we gave Julia after her surgery to protect the delicate work that the surgeon had done on her heart valves. We stopped giving it to her after we got the okay from Dr. Weinhouse last May. That was over a year ago.

But for just a moment, as Jocelyn finished cleaning up from dinner and getting ready to meet a friend for coffee, it all came flooding back.

I sometimes marvel at how seldom I think about those first intense months of Julia’s life when the needs of little girl now sleeping happily upstairs utterly overtook our household. But I marvel all the more at the little touchstones that God puts in my path to remember and say “thank you”.

It took a small brown bottle of long-expired medicine to remind me of the nights of sacrifice common to all new parents, painted over with a thin watercolor tint of uncommon terror as we painstakingly documented every milliliter of fortified milk that she took in. Staying mindful of the 150 kilocalories per kilo of body weight per day target that the docs had set for a healthy weight gain, we celebrated when she was able to fight through the fatigue of a failing heart and take in a whopping sixty milliliters in one feeding. And it often felt like the world was going to end when she spit it up like any normal baby does from time to time.

But we stayed even more mindful of the drugs that kept her comfortable before her surgery and protected her heart after we brought her home. Dosing, timing and praying to God that she wouldn’t hurl it up after we gave it to her. Dr. Weinhouse told us in so many words (and out of his love and concern for us) to chill out a little bit, and toward the end we started to.

But before too much longer, it was done. May 30th, 2011. Julia took what we pray was her last dose of heart medicine for a long, long time.

And as you can tell a year later, she is thriving. Now we have a whole boatload of new challenges: therapies to get her strong and mobile (not much longer!), negotiating with the school’s special education department for services over the summer (no dice) and thinking through the implications of the selection of a new school superintendent. But for all of the challenges, we find ourselves enjoying the present far more, even as we prepare for her future.

But sometimes it’s important to remember what has passed, remember God’s presence in it, and say “thank you”.

Oh yeah, and remember to clean out the fridge a little more often!

Good to be back…

Tagged with:

Meeting Abigail

On June 29, 2011, in Julia's Journey, Personal, by Chris

One of the real highlights of our vacation was a long anticipated meeting. Not long into our adventure with Julia (and my writing about it), we were contacted by a longtime friend of Jocelyn. He had a friend, Kate, whose daughter was diagnosed in utero with Down Syndrome and the same heart condition as Julia. After introducing her to the blog, he contacted Jocelyn and arranged an introduction.

What followed was some of the most amazing interactions I’ve ever witnessed. Abigail was due right around the time that Julia was supposed to go in for her heart surgery, and Kate had all sorts of questions for Jocelyn on what to expect for the rest of her pregnancy and how to prepare for the birth. Having just experienced what Kate was about to go through, Jocelyn obviously had a lot to share. Through e-mail and text message (the first time they spoke on the phone was setting up our meeting!), she coached and encouraged Kate with all she had learned in the months leading up to Julia’s birth.

But the encouragement didn’t end with the birth of Abigail on that marvelous day in January. Kate and her husband, John, prayed for Julia as she faced her surgery and the hard days following. Jocelyn kept the information going with feeding tips, medication expectations, and the questions to ask the medical staff as the new family navigated through their daughter’s condition.

Knowing the crushing stress that Kate and John were under, we prayed for the family in March as Abigail went in for her procedure. Those of you who follow me on Twitter and Facebook may remember that I asked you to join us in those prayers.

I’m happy to tell you that Abigail’s on the other side of it now and doing great. Our breakfast together last week was the realization of a dream for two families – and the continuation of a lifelong friendship!

So cool to see these kindred souls meeting face to face!

Tagged with:

Home Again!

On January 26, 2011, in Julia's Journey, Personal, by Chris

Hey everyone –

A very short post to tell you that Julia was discharged from Children’s Hospital today. We are home and I fulfilled a little dream of taking a dozing on the couch with my little girl crashed contentedly on my chest. Needless to say, we are exhausted; but thank you for following us through this adventure. I’ll have plenty to say after I stare at a wall for a minimum of 24 hours.

Thanks again.

Tagged with:

The State of Julia

On January 25, 2011, in Julia's Journey, Personal, by Chris

Ladies and Gentlemen, prayer warriors, well wishers, friends and family:

The State of Julia is strong.

We’re in the home stretch here at Children’s Hospital of Michigan. Today during morning rounds, I heard two of the most beautiful words: “Discharge Studies”. Basically, they’re taking one more look under the hood to make sure all is well before they send Julia home. We have no firm discharge date yet, but most of the team grins when they talk about tomorrow. Makes me grin too!

They did an echocardiogram and an electro-cardiogram to be sure that the valve and septal reconstruction are holding. There is also an X-ray scheduled for tomorrow morning to be sure that there are no fluids accumulating in her chest. There are also the consults on home care, symptoms to look for that would merit a call to the Cardiovascular Staff and the “oh crap” signs that mean get her to the Emergency Room fast.

I also want to take this opportunity to thank the literally hundreds of people and faith communities who have been following Julia’s story and approaching God through a broad spectrum of traditions and personal disciplines and humbly asking for help for our little girl. A few of you have sent pictures:

Prayers from the Church of the Holy Redeemer in Rochester Hills, Michigan…

Congregational prayer from Faircreek Church in Fairborn, Ohio, where Jocelyn grew up…

Children of the Grace Children’s Home, run by my friend Jaya in Andhra Pradesh, India…

And a candle lit at the Cathedral Church of St. John the Evangelist in Brecon, Wales on the day of Julia’s surgery. This short list doesn’t include faith communities in the Netherlands, Greece, a Roman Catholic Church (praying in Spanish) in Corpus Christi, Texas and dozens of families and individuals on three continents that are too numerous to mention here.

It is our deepest conviction (including that of our medical team) that the prayers and good thoughts of so many have sustained Julia through the first few months of her life when her heart had no business doing what we were asking it to do and through the surgery and recovery time of the past week. You have prayed for the sanity of her parents, for the skill and clarity of the medical team and for the indomitable fighting spirit of our little girl. This could not have happened without your prayers and encouragement and we humbly thank you.

You’ll be hearing more very soon!

Tagged with:

One Week’s Progress

On January 24, 2011, in Julia's Journey, Personal, by Chris

This may very well be the shortest (in word length) entry I ever do:

Monday, January 17 – 5:56pm:

Monday, January 24 – 5:10pm:

Guess that says it all, huh?

By the way, that was the first time I saw my little girl’s smile in over a week. Melted her Dad’s heart.

Tagged with:
Page 1 of 712345...Last »

© 2010-2016 Chris Cook
All Rights Reserved