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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An Eleven Month Dream Cruise

On August 20, 2011, in Julia's Journey, Life, Personal, by Chris

It’s been eleven months to the day since this little bundle came into our lives, and what better way to celebrate than the Woodward Dream Cruise!

Now I know that most of you want the picture of Julia. Don’t worry, it’s coming. But you need to understand what cars are to the Motor City. Nearly a million people come out every year to see the largest one-day automotive event in the world. This is a big…


But the biggest deal in my life is the two girls behind the wheel of this vintage Camaro. The owner was kind enough to let us get Julia’s eleven month old photo in grand style (by the way, the guy is selling it, so if you’re in the market…). The past eleven months has been a roller coaster, but a great adventure. And we’re looking forward to what comes next!

Oh, my! We are only a month away from her first birthday!

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An Unexpected Trap

On August 7, 2011, in Julia's Journey, Life, Personal, by Chris

It fell just a tiny bit more into place just the other day. The reality of what is before us came a little bit more into focus. It started innocently enough – I was picking up Julia from daycare. 4:30pm is the time when all of the parents converge and the room is always a bustle of activity as the day comes to a close.

One of her playmates (I’ll call her Emma) was born just a week or two after Julia. It’s so cute to see them interact the way they do – sitting on the floor and looking at each other in wonder, sharing a toy or a book under the watchful eye of Miss Carla or Miss Tia. I don’t know if Emma and Julia will be friends forever, but the daycare workers say they are “BFFs”.

I was loading Julia into her car seat and Emma’s mom came in to pick her up. “Do you want to show Mr. Chris your new trick, Emma?” she asked. It took a little encouragement, but it wasn’t long before Emma popped out of her sitting position and started crawling toward her mom. It was amazing to see and we celebrated Emma’s achievement together. It had been less than a week since she had started and it apparently came almost out of nowhere.

I looked at Julia as she sat grinning and cooing in her car seat and it hit me.

Julia’s not anywhere close to crawling.

She’s getting passed up by kids younger than her.

Her developmental delays are becoming a little more evident.

For all of her progress, Julia still has Down Syndrome and there are realities that have yet to unfold. And there is no way on God’s green earth that we are going to be able to avoid it.

Needless to say, it was a quiet ride home.

But let me pause for just a minute and tell you that I love my kid and she is an absolute delight. This tale ends well, but it takes a minute to get there. Okay – back to the story.

I can get pretty quiet when there’s something churning in my head; and I’ve had to learn to work hard to articulate it before it gets displaced into something else. The household suffers when my pensiveness and sometimes melancholia gets twisted round and expressed in my frustration with something totally unrelated.

I walked into the house with Julia; and as quickly as I could, I choked out what was bothering me. Jocelyn is very intuitive and could tell there was a something going on within minutes, so there’s no way I would have hidden it for long.

“Emma started crawling.” It came out like I was announcing that the car was going to need transmission work.

“I know,” she replied, “I saw her dad in town today and he mentioned it. I thought it was great news since kids with Down Syndrome are visual learners and it will be good for Julia to watch Emma crawling.”

“Yeah. That’s a good way of looking at it.”

One piece of news – two reactions. Glass half empty – glass half full. But what was it that got me in that funk so quickly? Granted, I can have kind of an “Eeyore” outlook sometimes. But if we set that aside for a moment, I’m afraid I got caught up in something that plagues all of us at one time or another.

Bottom line, I got caught in the comparison trap. Their kid is crawling – mine isn’t. Their kid is walking – mine isn’t. Their kid is doing long division and made the traveling team and just discovered a new planet between Uranus and Neptune… You get the picture.

I mourned a little death that afternoon; but it wasn’t a person or a relationship that passed away. It was the expectation I had unconsciously put on Julia that had no business being there in the first place.

Leadership consultant Marcus Buckingham once observed that the greatest joy and the greatest challenge in life is not wanting to be someone else. I say the greatest joy and the greatest challenge in parenting is wanting God’s dreams for your kid and leaving yours at the side of the road – no matter how redeeming you think they are.

It’s true, I celebrated with Emma’s mom at the new development; but for just a moment as I looked down at my precious little girl, I felt the twinge – okay, the stab – of my expectations coming a little more in line with reality. And the reality is that Julia will crawl one day. Just not today.

She will even walk and someday know joy and elation – and feel the sting of betrayal and disappointment that I cannot shield her from as much as I want to. In the end, though, I have to help her to live her life to its fullest potential and not expect her to live mine.

Jocelyn and I said at the outset of this adventure that we need to let God and Julia define Julia. The afternoon surprise of another kid’s milestone was, for me, just another necessary exercise of letting go and loving my little girl right where she is.

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On July 31, 2011, in Julia's Journey, Life, Personal, by Chris

It’s been a hot, dry July, but a few inches of rain over the last several days has greened up our lawns and saved the corn crop out at the farm. We’ve spent most of the month trying to keep cool, but there have been a few highlights.

After our long-awaited visit with friends in Washington D.C., they sent us the gift of a cookbook for making baby food at home. It wasn’t too many pages in before Jocelyn started acting on a longtime ambition. A few weeks before, she had met one of her favorite Food Network chefs, Tyler Florence, on a tour promoting his new baby food cookbook. Since then, our kitchen has turned into a veritable assembly line cranking out all kinds of great recipes.

I really admire my wife and have realized how uniquely gifted she is as a mom. She had wanted to transition away from jarred baby food for a while – primarily for the control over the food’s texture and what that does for Julia’s oral-motor development as she eats (can you tell she’s done her research?). Not only that, it’s cheaper and we know exactly what’s going into our girl.

With all of the new food adventures at hand, we needed to get down to Eastern Market for a food buy. It caters to commercial buyers during the week; but on the weekend, farmers and growers from all over converge and make their wares available to anyone. If you haven’t experienced it, you need to check it out. It’s one of Detroit’s gems.

Julia is doing great at ten months old. She got a glowing report from the pediatrician last month saying that despite the heart surgery (which normally sets a typical kid back a month from a developmental standpoint) and the Down Syndrome, the doctor figures she’s only six to eight weeks behind.

She has mastered sitting up and, with mom and dad’s help, is working getting from the sitting to prone position without doing a face plant. She still has her marvelous eye contact when she engages with people. I’m not sure why that excites me so, but there it is. And she still has her fans on the church staff who steal down to the daycare to get their regular “Julia Fix”.

Another highlight of the month was a visit from my sister – Julia’s aunt Lisa. She often flies in from Colorado and stays out at the farm with my dad. She last saw Julia a month after the surgery, so she was obviously happy to see her almost double her size from last time. Lisa and Jocelyn also got some time together as they explored the Ann Arbor Art Fair. Lisa is quite a veteran of the Art Fair and a great guide to the city.

There was also a new addition to our larger tribe. Olivia Renee was born on July 14th to our dear friends, Chris and Lisa. We stopped by on our way out to the farm to drop off a meal and I took the opportunity to do a quick photo session with them.

All in all, a great summer so far!

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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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