Goodbye, D.C.

On June 22, 2011, in Life, Personal, by Chris

We had a great time hanging with my sister and her family, but we gotta say goodbye and hit the road tomorrow morning. This is such an incredible town with all of its history and marvelous people. We leave our family and friends here with the promise that we’ll be back soon.

Julia had a great time as well!

Dayton – here we come!

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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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Mother’s Day Perspective

On May 8, 2011, in Julia's Journey, Life, Personal, by Chris

(editor’s note: Hey everyone – I am very happy to tell you that we have a guest writer today. I have wanted to get Jocelyn on here for so long to offer her insight on our family’s journey (and the fact that she’s a much better writer than she gives herself credit for!). What better day than Mother’s Day for her debut. Enjoy!)

I know it’s surprising to hear from me since Chris is the writer in our family & the blog is, after all, But when I told him I was considering writing something for Mother’s Day, he was all for it!

Recently I’ve been thinking back to what we were going through this time last year. May 1, 2010 we received the news that our baby was a girl, that she had Down syndrome & they found a heart defect that would require open heart surgery.

My reaction was shock, despair and fear. I don’t think I had ever experienced such intense grief. There was a lot of crying out to God, “What are You doing? I can’t handle this!” It was that night we named our daughter Julia Paige, wanting to bond with her right away in the midst of the fear of what the future may hold for her, and us.

That week was a roller coaster of emotions to say the least. We were not only having to deal with this scary news, but also the medical community assuming and implying that we would want to abort our child because of her diagnosis!

That next Sunday I sat alone in the Mother’s Day service at Kensington, while Chris was in the lobby photographing Moms with their families. Music was playing and I think pictures were scrolling across the screen. Tears welled up and I felt overwhelmed with fear, uncertainty and sadness as I contemplated being a first time Mom, and on top of that a Mother of a special needs child! I felt so inadequate and grieved the loss of having a healthy, “typical” child. I felt as if my emotions would overtake me right there in the service, so out of desperation I cried out to God, asking for help, admitting my fear and feelings of inadequacy.

Now, I’m not one who is very expressive regarding my faith and am not much of a “feeler” when it comes to my relationship with God. So, that morning, as I cried out to Him, I was surprised when I immediately sensed Jesus’ comfort come over me. My breathing slowed, my tears lessened and I felt an incredible sense of peace, all happening in a matter of seconds. It was amazing to experience the presence of the Lord so personally. In that moment, I knew God was with us in this journey and that He had a plan for our little girl.

There were still emotional times over the coming months as we prepared for Julia’s arrival. But, at the core of those feelings was a certainty of God’s hand on our daughter and with us. I connected online with other Moms who either had children or were expecting a child with Down syndrome. I held on to the words from one Mom who said her only regret was that she cried so many tears before her son was born. I kept hearing over and over how blessed these families felt and how much joy their children brought them. I hoped I would feel that way some day.

And now, a year later, our sweet girl is 7 months old, has survived her open heart surgery and is truly a blessing in our lives. I am so happy that the sadness and grief that were so present a year ago have been overtaken by joy and hope.

Walking through those dark days of Julia’s diagnosis, as well as the stressful days after her birth and her open heart surgery, have made these days so much sweeter. I experience such joy in watching Julia’s face light up when she sees her Daddy, or peaking in on her sleeping peacefully, or watching how strangers are drawn to her and she makes them smile.

So, as I think about my first Mother’s Day, I’m naturally inclined to appreciate my own Mom so much more. Being a Mom is hard, but so rewarding and I’m thankful for all my Mom has done for me.

I also think of so many friends who want to be Moms and have had trouble conceiving, endured the heartache of miscarriage, waited many long years hoping to adopt a child of their own, or walked a similar path as my own receiving some scary news about the child growing inside them. I don’t have answers as to why these things happen, but I can speak from my own experience that you are not alone. In addition to so many women who have experienced similar pain and uncertain times, I know there is a God who is near, willing to shower you with love and peace when you cry out to Him.

Happy Mothers Day!

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Easter Joy

On April 30, 2011, in Julia's Journey, Life, Personal, by Chris

We took some time last weekend enjoying the still-coming spring here in Michigan and puttin’ on the dawg for Easter. My dad came out from the farm and shared a marvelous brunch at a local restaurant with us and we all had a great time (I got the banana stuffed french toast!).

Our new friend, Jerry, finally got a chance to meet Julia face to face. This guy has one of the biggest hearts I’ve seen in a long time. Let me back up a little bit: The Friday before her surgery, Julia passed her pre-surgical assessment and we wanted to celebrate. Taking her out in public for dinner wasn’t an option since we were still on cootie patrol and trying to keep her safe from infection; so we opted for some upscale takeout. Jerry was the guy who took my order, and by the time he heard our story while I was picking up the food (and showed him a picture of Julia), I got a hearty handshake and a promise for drinks on him when Julia got through the surgery.

We have since kept in touch with Jerry. I took Jocelyn to the same restaurant to celebrate Valentine’s day and his affection literally bubbled over as he saw Julia’s post-surgery pictures. It still amazes me how her story continues to touch people, even months later.

Brunch was followed by a little walk around Birmingham and the unbridled glee of our little girl and her first Easter Basket. I’m pretty sure she had no idea what she had her hands on, but it was still fun to see the holiday through her eyes.

Happy Easter everybody!

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