Bring It + 365

On September 12, 2011, in Commentary, Life, Personal, by Chris

It was a warm Sunday afternoon a year ago that I settled into the comfortable chair in my daughter’s as yet unoccupied nursery to begin the adventure in words and pictures that you see before you.

After recounting the challenges we had seen in the months before and those in the future that seemed to be lining up against us, I began this blog with a simple, scary request of God:

Bring it.

That request was not made lightly or flippantly – but it wasn’t without more than a little trepidation. In fact, it was nearly an act of desperation as Jocelyn and I clung to the possibility that amid the cloud of Julia’s frightening diagnoses of Down Syndrome and heart defect, God was there with us. If he wasn’t, we were going to be in deep, deep weeds.

I hesitate to use such a trite metaphor, but the only way I can describe the last year is that it was a roller coaster. But I will add that it was a roller coaster after your fifth corn dog.

So where are we now? Well, the fact is that I’m writing this at the end of the day with my wife crashed beside me after the bottles have been washed and sterilized and the baby’s in bed. Julia’s had a few fitful nights (teething, we think) and we are all feeling the ache of fatigue that comes from a couple hours less sleep.

But if you’ve been following this little narrative, you’ll know that Julia got through the surgery successfully and the scar on her chest is fading even as the memories of the long days at the hospital fade a bit from our minds.

Honestly, a year after “Bring it” finds me wrestling with a lot of the same questions as before, although their shape and texture have become a touch more conventional as I settle more comfortably into being the dad of a delightful little girl with a mended heart and a tad extra on Chromosome 21. What kind of cruelty will Julia face from others because of her condition? How will she live once we are gone and she is on her own?

A lot of the time, I can push those uncomfortable questions down with a household project or the hum of activity in the office, but it came to the forefront of my mind last Sunday at church as we commemorated the somber tenth anniversary of the September 11 attacks. Since that ugly day, our pastor observed, we as a country have become consumed with security in a very dangerous world. And it was in the middle of the message I got that horrible feeling that I’m really no different.

I am wondering if the crush of the last year has caused me to hang on just a little more tightly to my life, my family and my stuff.

There it is. It’s true that adversity can draw you close to God. But the pernicious flip side is that it can just as easily make you run in the opposite direction. Even when I’ve experienced the Life that is God, I still often find myself clinging dumbly to things that will eventually end up in a landfill, expecting them to give me life.

I hear him asking me, “You’ve trusted me with your life. Will you trust me with Julia’s?” I’m ashamed to tell you that far too often, if I were really honest, the answer would be no.

But here is where I have to go back and do the gut check. Do I still believe that God’s dream for Julia is better than anything I could ever conceive of? And if my faith says that God spoke the universe entire into being, who is more equipped to unlock the best from her (and from me, for that matter)?

Yeah, this “Bring it” thing is hard, hard work sometimes. But all I have to do is listen to the satisfied coos of my daughter and watch my wife as she sleeps beside me, exhausted from the day (“But a good tired,” she says). These are the little reminders that something deeper and more wonderful awaits those who press into life’s occassional discomfort and abandon themselves to the adventure that God has for them.

Here’s to another year.

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Great News from Dr. Weinhouse

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

Many of you remember the experiment we entered into a few months ago when Dr. Weinhouse, Julia’s cardiologist, took her off of her heart medicine. He decided to see her again at the end of the summer instead of the customary six months, just to make sure that his decision was a good one.

We are always glad for an opportunity to see our friend sooner than later, so Jocelyn and I spent the summer watching Julia’s progress and looked forward to seeing how she fared without the meds that we had thought were going to be needed indefinitely.

It was a strange feeling I had the night before her visit. I’m not sure where it came from, but I got the urge to pray for a good report. I kept going between thinking everything was going to be okay and nagging feeling that heart issues often have very subtle symptoms.

That night, I lit up my Twitter and Facebook community asking them to pray for a good report. I gotta tell you that this is one great group of people who have been so faithfully praying for our family, including a worldwide prayer vigil before her surgery. I honestly don’t know how we could have gotten through this without them.

We went in yesterday morning for the weigh-in (over eighteen pounds now!) and the initial exam. It was so great to see the staff again. They all recognized her and most remembered her name. But it was the echocardiogram that was going to be the real test. Within minutes, Dr. Weinhouse’s face burst into a smile as he said, “WOW! Contractility of 75-80! She is doing fantastic!”

We would find out later that contractility is the heart’s ability to push the blood out, but we didn’t need to know the numbers to understand what was going on. Julia’s heart was working fine without the meds.

So we celebrated and prayed together as always, but I honestly felt a note of bittersweetness at the thought of not seeing our friend as often.

I’ll leave you another prayer request as a postscript. As we walked into the office that morning, reasonably confident that our family was on the other side of this challenge, we saw another family at the beginning of their journey. The parents sat huddled together, a tiny baby on mom’s chest. They nervously shared whispers of half-hearted encouragement as she cuddled the baby and dad cuddled her.

I don’t know their names and we may never know their story; even though I told Dr. Weinhouse to give them our name and number if they needed encouragement. But I saw a very familiar look of stiff-jawed dread on that father’s face. He was right where I was almost a year ago as I searched through every personal and emotional asset for a way to face the coming storm. Fortunately, I had a constellation of friends around me, prophetically reminding me of the comfort God offers for those who are crushed in spirit.

Please pray for that little family at the beginning of their journey, that God would give them the full measure of the encouragement that he gave us.

Thanks so much for your prayers!

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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!

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On May 28, 2011, in Julia's Journey, Life, Personal, by Chris

Jocelyn and I took advantage of her family being in town to have Julia dedicated at our church this afternoon. In the chapel where Jocelyn and I were married and with a few who had been a part of that great day, the pastor who married us dedicated our Julia, drawing from the Old Testament story of Hannah and her son Samuel as inspiration.

It’s a tradition at Kensington for the parents to offer their thoughts to their child as well. Here’s what we said:

Julia Paige – almost a year ago, your mother and I were sitting with several doctors who were helping us process the implications of some scary news we had received about you. We heard words like “complications” and “heart defect” and “Down Syndrome”. There were a lot of opinions as to what your life would look like – some were hopeful, others were quite a bit more bleak. After giving us all of the information they had, they waited for our response.

We had cried out to God many times as your story unfolded in the weeks previous. The people most important in our lives prayed with us and encouraged us as we sought out His will for you and our part in it. In the end, our response to those doctors was the deepest conviction that God had given us: We didn’t know how it was all going to come together, but we believed you were going to have a massive impact for Love on this world.

That conviction remains to this day. God has beautiful dreams for you and an adventure in this life that defies our wildest imagination.

We have seen some very hard days together in your young life, but even in the worst of it as we watched you come through your heart surgery during those dark days at the hospital, we saw that you had a fighting spirit that would not be denied. God brought you a cardiologist who prays over you in Hebrew and a heart surgeon who prayed with us the first day he met you. There are still dozens of people all over the world who are following your story and praying for you every day.

We have seen already your amazing ability to connect with people – the way you catch their gaze with your beautiful eyes. People see Jesus when they look at you. I am still sometimes overcome with the wonder of it all in the quiet of the evening as you sleep peacefully on my chest after your last bottle.

Your mom and I know that we are mere stewards that God has chosen to care for you for a season; and we are going to mess up – a lot. Nonetheless, it is our commitment to you and to the community assembled here today to do our very best to yield our hearts to Him and continue to let our hearts be changed and redeemed. And out of the overflow of those redeemed hearts, we want to be instruments of His love in your life, teaching you and growing you to find your fullest potential in Him.

Julia, this world needs you and your story so desperately; and our prayer is that you come to know Christ and continue to weave your story into His.

On this day, we dedicate you to that great adventure.

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Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

– Ephesians 3:20-21

Amen! And we saw that power at work today!

We were expecting a normal consult this morning. Of course, it was a fun happenstance that we were going to see Dr. Weinhouse on Julia’s eight month birthday, but we couldn’t have dreamed of what we would walk out with. The weigh-in showed that she was growing well (14 lbs. 12 oz. and 25 inches), but the real fun came with the echocardiogram.

It was standard stuff to begin with, but Dr. Weinhouse got more excited as the testing progressed. His descriptions began with “very good” and progressed to a big smile and an enthusiastic “Beautiful!” The outcome was that the leak in Julia’s mitral valve could only be classified as “mild plus” and her heart’s contractility was better than average. Toward the end of the testing, we were thunderstruck when he said that there was no need to keep Julia on her heart medication!

We were told at Children’s Hospital that Julia would need Enalapril indefinitely to reduce the blood pressure and protect the newly constructed valves; so our expectation was that the therapy could last years. For it only to be four months was far, far beyond anything we could have asked. We celebrated by giving Dr. Weinhouse an addition to his picture collection and Julia celebrated with a soak in the tub.

She continues to amaze us as she continues to grow. Her preferred mode of transport is rolling where she wants to go; but she’s getting stronger daily and it won’t be long before she’ll be able to sit up on her own. Thanks for your continued prayers!

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