We Have A Dream

On January 16, 2011, in Julia's Journey, Personal, by Chris

I suppose I’ll never understand on this side of eternity why one is given a certain burden and another gets something totally different. Fortunately, there are plenty of blessings and encouragements mixed in – if you’re watchful – to take some of the edge off. Nonetheless, no one would have convinced me or Jocelyn five years ago that we would be gutting it up to hand our child over for something so traumatic. Fortunately, no one has had the temerity to tell me that this procedure is routine – that would have illicited a harsh response from me. Routine schmoutine. This is my kid you’re talking about.

The whole thing seems at its face so nonlinear and even arbitrary that at times it makes my head hurt trying to connect the dots. Three years ago, I was just getting to know the woman who would eventually be my wife. Eleven months ago, the prospect of fatherhood jumped above the horizon, with the scary news of Julla’s Down Syndrome and the heart defect coming quickly on its heels. It’s been at turns rewarding and exhilarating and terrifying; and never in my life have I felt so responsible and so helpless at the same time.

But we honestly haven’t had to look very far for the blessings and encouragement. We have been utterly enveloped on all sides with text messages, Facebook posts and e-mails. The encouragement from all over the world has been absolutely humbling. Before we left, our teenage neighbor brought Julia a teddy bear that consoled her years before when she was in the hospital. Even as I write this, Jocelyn’s sister, Jennifer, is heating up a homemade lasagna and providing the extra pair of hands that is absolutely invaluable at times like this.

So on the eve of the day celebrating Martin Luther King, that most marvelous of dreamers, Jocelyn and I are adding a humble little dream of our own. More than anything, we want our daughter to live and thrive and be a small reflection of the love that God has for us and the world. But in order for her to thrive, we have to do the hardest thing a parent can be asked to do: we need to entrust her to God and to the skills of people we barely know. It’s a little earlier in the game than most parents have to deal with, but in our moments of clarity, we know that it’s ultimately a good thing.

It is our deepest conviction that this little girl is going to make a massive impact on the world for Love. We don’t yet know the shape of that impact; but as we weave our prayers with the hundreds of others that are being lifted up for our Julia, we anticipate only good things – even when they come in improbable and often uncomfortable packages.

I’m not sure how often I will be posting over the next few days, but keep an eye on the righthand side of the blog for the latest updates. You can also follow me on my Twitter feed. I’ll be shooting text messages to it regularly.

On behalf of the entire Cook family (all three of us!), please accept my most heartfelt thanks for your prayers and concern.

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Challenges and Blessings

On December 12, 2010, in Julia's Journey, Personal, by Chris

The first big Midwest snowstorm of the season has come upon us this afternoon in big, fat, wet flakes. It’s the kind of day that makes you really, really glad that you have your Christmas shopping done and can take in a lazy afternoon of comfort food and nostalgic movies. We, unfortunately do not have our Christmas shopping done, so I’ll be on Julia duty while Jocelyn braves the elements this afternoon to run a few errands and hopefully find that perfect present for her hubby.

There has been little new progress in terms of Julia’s progress – except that I brought home a cold last week and immediately gave it to her. Nothing really earth-shattering, we found out later, but it makes the feeding a little more challenging. It’s amazing what makes you realize how tenuous our position can be. I felt terrible about it when I realized my sniffles were not allergy related and for a couple of days did not go near Jocelyn and Julia in deference to their well being. That forced all of the caregiving for Julia on her mother and leaving me to sit across the room and watch them. And I never really knew how much I could envy a person until I watched Jocelyn holding our daughter and not be able to myself.

I got a new fun medical fact when all of this shook out. It seems that the common cold is at its most contagious two or three days before the symptoms show up. But the pediatrician said that even though Julia had what I had, she would be fine and wouldn’t re-contract it once I’d given it to her. So I needed to cowboy up and hold up my end of the caregiving. Yahoo!

As I mentioned, with the reflux and cold the feeding has become a little more challenging. Her volumes are an ounce or two below the normal daily target. Perhaps it was providence that Dr. Weinhouse, our cardiologist, advised us to relax and let her take what she takes and leave the rest to God. It’s been an important challenge, since we can offer it, but Julia’s got to take it. Despite the feeding challenges, however, Julia had still gained three ounces for the week!

There have been other blessings as well. One was a new acquaintance we made with Audrey and her parents, Jim and Jessica. Dr. Weinhouse noticed that she was in for a routine follow-up exam and wanted to be sure that we met. Audrey had, last August, undergone the same procedure with the same surgeon that Julia will be doing in January. She had gained very little weight before the surgery, but you can see that she’s doing great now! It was a real encouragement!

We also found the beauty of community as our dear friend Patricia gave Jocelyn and I a much-needed break on Friday afternoon to do some Christmas shopping. It was… interesting… for us to be away from her, but a good exercise in the end. Julia did great, Patricia had the time of her life and the new parents realized that it’s okay to leave their kid for a while.

The snow is still falling and we just put our little girl down for a nap. I need to go out and shovel some snow! Stay warm everyone!

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Thankful

On November 25, 2010, in Life, Personal, by Chris

The heavy rains of the day have subsided and I’m curled up by the fireplace in a rented house up on Cass Lake for the holiday. Epic sessions of Yatzee and Mexican Dominoes are in progress among the generations. Jocelyn’s entire family has gathered here from as far away as Texas to be together for Thanksgiving – and also to meet Julia. There was no way we could fit them all in our 900 square feet in Birmingham; so instead of holing up in hotels, we decided it made more sense to rent something we could all be together in.

I’m one belt hole bigger after a dinner, masterfully prepared by Deirdre, my sister-in-law. She has an uncommon passion for food, having brought many of the ingredients for the stuffing up from Ft. Worth in her luggage. If you get invited along on a restaurant crawl with her, clear your schedule!

The carbs and tryptophan are starting to take their toll, but I couldn’t let the moment go by without sharing a few of the things I’m thankful for – just in the past week:

It had been a tough week of feeding for our girl. Very often, the routine has been (1) Feed (2) Burp (3) Cough (4) Hurl. And far too often, we saw all of our care and feeding come splashing on the floor, followed closely by a frustrated howl from Julia. The pediatrician has diagnosed her with acid reflux (pretty common with kids this age) and has put her on yet another medicine to make her more comfortable.

Despite the challenges, Julia still gained four ounces and is on a fantastic growth curve. The meds continue to work as intended; and Dr. Weinhouse, the specialist overseeing her heart condition, is very pleased. We gathered in his office after the consult to pray together in thanksgiving for Julia’s progress.

We got a bulletin from a church we have never heard of in the mail. There was a note written on it from a friend of a friend that they had heard about Julia and put her on the church’s prayer list. We often hear about people praying for Julia, but the note brought into focus the kind of love and concern that folks can have for someone they have never met. By my last count, I know of people gathering to pray for Julia in the U.S., Mexico, Greece, the U.K., and India. Humbling.

We have received countless casseroles and pot pies from well wishers that have allowed us to not think that much about preparing meals over the past two months. It has laid waste to my weight loss regimen, but it has taken so much stress off of Jocelyn and I as we focus on preparing Julia for the upcoming surgery.

And as a confirmation of the richness of the community that God has blessed us with, in the time it has taken me to write this post, I’ve received three text messages from friends wishing us a happy Thanksgiving.

A wise friend of mine has suggested that the first step toward a life well lived is to take an intentional step toward gratitude – be thankful for what you have and not angry about what you do not have. Today, we all have the chance to do that (before the carnage of Black Friday) and step more fully into the stream of beauty that awaits. Sometimes in the pursuit of happiness, we just need to stop and be happy.

Thanks everyone from the Cook family!

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Visits – Docs and Family

On October 26, 2010, in Julia's Journey, Personal, by Chris

A lot has happened over the last week, the most exciting of which is that we really feel like we got our team to do Julia’s surgery. We met last Thursday with Dr. Henry Walters, the Chief of Pediatric Cardiac Surgery at Children’s Hospital of Michigan. We felt utterly taken aback by his humility and concern. He spent time with us, explained her situation and how the defect would be repaired (amazing! and will be explained in a video I’ll be posting soon).

We have our tentative surgery date – January 17th – the countdown of which is on the widget at the upper right of this webpage. We also have our marching orders: body weight. The tissues that the surgeons will be working with are as thin as Kleenex, and the more weight we can put on Julia, the stronger those tissues will be. The goal is a minimum body weight of 4 kilograms – or eight pounds, twelve ounces – but getting her over ten pounds would be better. That will be a tall order considering she’s so petite, but we are going to take a serious run at it.

As Julia’s symptoms progress, the feeding will become more of a challenge. It’s like trying to eat while running wind sprints. So we will be very watchful over the next couple of months.

In the meantime, Julia is eating well and taking visitors! My sisters, Lauren and Lisa, along with my nephew Zach and my Dad came over for dinner on Friday. Our dear friend, Alice, came the following day. We even took advantage of Sunday’s nice weather and took a stroll around the block. Sometimes, it even feels normal!

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Whatta Week…

On October 15, 2010, in Julia's Journey, Personal, by Chris

I’m sitting next to my wife with the baby in her arms after a pretty tiring day. After a week’s blur of doctor’s appointments, trips to the pharmacy and paging through volumes of insurance forms, we are really feeling the fatigue.

Julia has had a lively day where she stayed awake almost the whole morning and then had an afternoon photo shoot with a family friend who happens to be a very talented children and lifestyle photographer. Shannon is a good friend who actually got me out from behind the camera for a few family shots (more on that later). It turns out that all the activity tuckered our little girl out and put her on the corner of Fussy Ave. and Cranky Street. No fun when that happens, but now she is resting comfortably. Even as I write, I am watching the pacifier in her mouth bob hypnotically up and down, pause, and then start again as she dozes and coos, waiting for her evening bottle.

I spent most of the morning lining up consults with pediatric heart surgeons – one at University of Michigan and the other at Children’s Hospital. I even drove downtown and navigated the rabbit warren of halls and elevators of Detroit Medical Center to drop off Julia’s chart at one surgeon’s office. This will be my life for a while – trying to juggle the roles of dad, husband, pastor, and (somewhere in there) child of the Creator.

I’ve received feedback from many saying they are praying for our little girl – thanks for that. It turns out that the results are… mixed, but ultimately hopeful. The Wednesday meeting with Julia’s cardiologist revealed that the “honeymoon period” is drawing to a close and the symptoms of her heart defect are beginning to show themselves. After intently watching her as she laid on the table, the doc detected a very subtle shift toward rapid, shallow breathing – a telltale sign of stress on the left ventricle of her heart. But he assured us that it was nothing to be alarmed about and that God loved Julia. And even through the quiet panic I have to fight off when I hear scary news about my daughter, at that moment, I believe him.

Dr. Elliot Weinhouse is truly an amazing man. An Orthodox Jew who, legend has it, is a rabbi at his temple and the father of nine children. Oh, yeah – he’s also one of the best pediatric cardiologists in the Midwest (my assessment). I’ll share another story of his passion for God and people – especially children: The first time I saw him at Julia’s bedside in the NICU, he took my hand, looked me in the eye and quoted the Priestly Blessing from the Book of Numbers – some of it in English, some in Hebrew:

“The LORD bless you and keep you;
the LORD make his face to shine upon you
and be gracious to you;
the LORD lift up his countenance upon you
and give you peace.”

… soothing words for a shell-shocked, uncertain new dad to hear. We even prayed together at her bedside with his uncertain East Indian resident.

He always has a kiss on the forehead for Julia, warm words of encouragement to steady the nerves of her parents, and as I mentioned in a previous post, his office walls are literally covered with the children (he says “precious children”) that have been under his care over the years. And anyone who, at the end of every visit, prays in Hebrew over my kid is a rock star in my book.

The disappointing news of Julia’s symptoms made Wednesday a quiet day as my mind churned through the emotion of it. This was going exactly the way medical science predicted. God seems to have decided not to delay the symptoms, as I had asked so many to pray for.

Damn.

But I, prompted by a benevolent butt-kicking by a friend, woke just enough from the weight and stress in my head to decide to be grateful in this. Notice: I did not say grateful for this, but in this. God gave us over a week at home to enjoy our little girl and not think about the heart defect too much. There will be a time that the trial will be complete. An in our more clear-headed moments, we do not fear for the life of our child. That is something worthy of celebration.

And the celebration continued the following day. The audiologist’s findings are that there is NO EVIDENCE of hearing loss in Julia. The right ear passed immediately and the left ear shows mere signs of fluid that can be remediated in many ways.

My baby will one day enjoy the symphony with her mommy and daddy.

So tonight we will celebrate, rest and hit it again tomorrow.

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