Every summer I get to ride with a great group of friends and colleagues from Compassion International. These are guys who dedicate themselves to helping children overcome the circumstances and causes of poverty. They have traveled the world on this mission and have inspired me to do my work with greater passion and dedication. It’s an honor to spend three days a year riding the mountains of Colorado with them. You can learn more about Team Compassion on our team page here.

This year our team will be wearing the sign below to celebrate Kai and the Children’s Hospital as we join 2,500 riders  in the 2009 Courage Classic.

-Russ

Russ has been a participant in the Annual Courage Classic for the past two years. The Courage Classic is a 3-day 160-mile bike ride through the Rocky Mountains that benefits The Children’s Hospital in Denver.  Every year we go to the mountains with a group of friends from Compassion International.  Some ride and some drop off, pick up and cheer at the finish line.  Every year Russ makes a valiant effort to raise money to benefit the hospital (and he does a pretty good job at it). However, this year Russ will be more than just a participant raising money for a good cause. This year Russ will ride as one who has darkened the doors of that hospital personally. This year he will ride as someone who knows what it’s like to bring your child to a place where, in an ideal world, children shouldn’t have to go.  He has been there as a father.  He has made that early drive to Denver to assure we’re not late for coveted appointments.  He has sat nervously in the waiting room waiting to hear his son’s name called.  He has watched as fathers have wheeled their child down the hall in specialized wheelchairs or cradled their newborns in their arms along with all of the accompanying medical equipment.  He has seen the look of exhaustion and tireless effort in other fathers’ eyes.  He has exchanged knowing glances with a passerby in the Metabolics hallway . . . glances that say a thousand words in one second . . . glances that say “we shouldn’t be here.”  My child shouldn’t be here.  And he has sat in an exam room while some of the most knowledgeable and compassionate doctors we have ever encountered gently examined our son.  He has sat in a room while a Genetics Counselor named Cathlin Rice who is kind and generous and everything any counselor should be explained Lowe Syndrome to two scared and overwhelmed parents.  This year Russ rides as more than a participant.  This year he rides to honor Kai whom we were blessed to have as our son for two months.  But he also rides to honor the people who made those dreadful trips to Denver just a little easier.  He rides to honor the courteous young men who valet park your car for free because when your kid is sick, parking your car is something you shouldn’t have to bother with.  He rides to honor the phlebotomists who were masters at drawing blood from Kai’s tiny veins.  And he rides to honor all of the Cathlin Rice’s of the Denver Children’s Hospital.  These are the people that brought glimpses of grace into some very dark days for us.  And to these people, we will be forever grateful.

- Rebecca

Currently there are approximately 20,000 nuclear weapons worldwide. 95% of those weapons are controlled by the USA and Russia. So when the presidents of these two countries come together to talk nuclear reduction strategies we should take note, especially as Christians who pray the Lord’s Prayer.

Today, President Obama and President Medvedev met in Moscow and signed an agreement that sets legally binding targets for decreasing strategic warheads. This builds on the treaty signed between Bush and Russia in 2002 known as the Strategic Offensive Reduction Treaty (SORT). While today’s agreement is only seen as an incremental improvement (the “legally binding” part is a new level of accountability, read more at CFR here) it is something for us to celebrate.

I was recently introduced to a Christian project to raise awareness and impact change toward a nuclear-free world. Can you imagine it? I must admit that it’s hard for me to get my mind around a world that says “no” to the devastating power of nuclear war. I’ve grown up thinking nuclear weapons were “normal.” But that assumption is a mistake. Why is it a mistake? Because we pray, “Thy Kingdom come, thy will be done on Earth as it is in Heaven.” And the impact of just one of these 20,000 weapons being used would be SO devastating (in primary and secondary effects) that it would cause generations of harm.

Is nuclear proliferation a matter of faith? Yes. To learn more visit the Two Futures Project here.

-Russ

Just returned from a great week in Kauai. We were looking for the right place to recuperate and I think we found the perfect location. At the start of the week I “accidentally” deleted the connection between my mobile phone and my work email so I was completely clueless about work all week. I highly recommend this accident to all of you who need to get “off the grid.”

We knew Kai’s name was a common word in Japan and Hawaii… but I had NO IDEA how commonly “kai” (meaning “ocean” or “sea”) is used throughout the islands. His name was everywhere! I was riding my bike one morning and saw “kai” on so many signs (see Java Kai below). Honestly, I was thinking to myself, “Dammit, I came here to forget… not to be constantly reminded.” Then I had a different thought. We weren’t really there to forget (we certainly will never forget Kai). We were there to rest. We were there to start taking early steps toward living with the memory of Kai and his presence as he grows up away from us. To remember that joy is still all around us. All the sudden the “kai” signs became good. God took my negative thought and twisted it back to something good. He reminded me that Kai is exactly where he needs to be and we are where we should be.

-Russ

Bike ride along the eastern coast

One of our many good reminders. And good coffee, too.

We took a Kayak to this waterfall

On the beach

Breakfast at our room. Great view. Great food.

Hike above north coast

me and my coach

The summer is here and that means it’s time to train for the Courage Classic  3-day, 150-mile bike tour. The Courage Classic is an annual cycling event to raise support for the Children’s Hospital of Denver. If you’ve been tracking the blog lately and know about Kai… you know that this year’s ride holds special meaning for me. It’s an opportunity for me to give back in a little way to all of those great people in metabolics, neurology and genetics who helped us determine a diagnosis for Kai. That diagnosis took about 4 weeks of regular visits to the Children’s Hospital. The people at Children’s are exceptional at what they do. I know firsthand.

This year, every pedal stroke will be for my little man, Kai. So what can you do to help? I have a few ideas:

1. Send me a comment to motivate me to train! I’m out of shape and need every bit of help I can get. Make it creative. A song would be nice.

2. Donate! I’ve set an audacious goal of $2,000 this year but I think we can do it! Visit my page here to make a tax-deductible donation. Any amount is good.

-Russ

Rebecca and Kai at The Children's Hospital (April 2009)

The past 2 months have probably been the most difficult of my 440 months so far. These sort of things always seem to hit you when you’re down. My “spiritual walk” (excuse the Christian jargon) has not been a good walk… faith not so faithful… hope not so hopeful. And along comes Kai, my son. What an unlikely and “painful blessing” he has been.

But I do know that God was faithful to me when He opened the doors to a little church in downtown Colorado Springs last year. Around December of 2007 we walked into the International Anglican Church at Shove Chapel. My first time to ever step foot in an Anglican church. But this group of people drew us in with their care for the poor, globally-minded prayers, sincere upward worship and serious attention to Scripture. It has been this group of people who have walked with us through this difficult time and have been the physical presence of Jesus with us. I am so grateful. So with the help of our friend Danita, I’ll share this original poem that so vividly describes the heart of our church.

Communion
by Danita Jenae

Row by row, we rise up and slowly walk down the aisle-
we file in together the way fingers do when lovers hold hands.
We come forward to eat from your table, to remember you.
You are the God of the broken.

She walks forward, weary of fighting for her marriage.
He just got home from the war.
He has no home to sleep in, but he rests here.
Take. Eat. This is my body broken for you.

He is a refugee, lost much to be here.
She is eight months along after eight years of trying, and
he just lost his job.
The body of Christ, broken for you.

He tries to muster up some faith, wondering if this is really it.
She has just been diagnosed, but somehow she is stronger in hope.
They long for a baby who just won’t come.
The blood of Christ, poured out for you.

She comes early to pray over every person who will sit in every chair.
He has buried his own child, and yet is a father to many.
She’s two and a half feet tall and dances in the aisles to worship.
Though we are many, we are one body because we all share in one bread.

You are the God of the broken. You raise us up from the dead.
Take. Eat. This is my body broken for you.
You are the God of the broken.

-Russ

Feelings of devastation come in so many different forms.  The first time I remember feeling “devastated” was when I was six years old.  My friend, Rochelle, was over at our house playing.  We heard the ice cream truck go by and excitedly ran to go meet it.  Unfortunately, we failed to mention to my mom that we were leaving the house.  We returned home to my very upset mother and Rochelle’s very upset father who had arrived while we were gone.  Rochelle’s dad had come to bring her things because the plan had been for her to spend the night.  After discussing amongst themselves, they decided that our punishment would be that Rochelle would not be able to spend the night.  I remember that feeling of devastation . . . that nothing would ever be right with the world again.  In my short six years, I don’t know that I had ever faced anything that seemed so impossible and I just wasn’t sure I would survive.  But I did survive.  If but for the grace of God, I survived.  When I was eleven years old, I remember that same sinking feeling when all of my friends at school got mad at me for sitting with a different group of friends at lunch.  It seemed that they all turned on me at once and I was devastated. I came home from school certain that I did not want to return the next day.  Again, I just wasn’t sure I would survive such a horrific experience.  But I did survive (and I think I might have gotten some new friends).  As I got older, that feeling returned at times but I was tougher and more experienced.  In high school it was the break-up with the first boy I ever loved.  I was devastated and just not sure I would survive.  But I did.  Then came adulthood and with it all the joys and pains of being a grown-up.  Marriages of close friends crumbling, test results coming back positive for a dreadful disease, friends leaving, churches splitting, losing people you love, and life plans not going as expected.  And with each experience, there is that familiar feeling that I just may not survive.  But I do.  Somehow, someway, I always make it through.  And a part of it is that I’m a bit older and more mature than when I was six years old.  I’ve realized that Rochelle not spending the night is not the end of the world as I thought it might be.  But the other part . . . the biggest part . . . is that it turns out that God is true to his word.  His grace is sufficient.  His grace is sufficient when you’re 6 and his grace is sufficient when you’re 33.  His grace is sufficient to carry me through the times that I’m just not sure I’ll make it.  These days I may not know much else; but I do know that.

- Rebecca

Just a quick note to assure all of our blog-friends out there that I’m not about to completely implode. Entries like my last one reflect those honest feelings that creep in late at night when I’m thinking way too much.

Things are rough but we’re coping. I hear people sing songs at church about being desperate and “wanting” to be desperate before God. When I hear these songs I think, “What exactly are we asking for and do we really want to be desperate?” While it sounds poetic and feels nice to wax on about being desperate before God… I am learning that the actual experience really sucks (in a spiritual way of course). It is only by God’s grace that we have made it this far. And I believe there’s more grace where that came from.

-Russ

I began saying goodbye to Kai this weekend. Saturday we spent the day together, guy time, up at a retreat center near the foothills. It was such a beautiful day! Such a contrast to how my heart feels.

When I was in high school I remember thinking to myself, “Am I going to make it through?” Some days it felt like high school would kill me (humorous in retrospect). As we approach letting Kai go to his new family, I can’t really comprehend it. I’m afraid the pain will overtake me. What will be left of me after he’s gone?

-Russ

A letter recently sent to our friends and family:

It is difficult to know how to express everything we want and need to express but we will try our best.  On April 7th we were asked to adopt a baby boy who was due on April 20th.  Instead that baby boy came on April 9th and we named him Kai Matthew.  When Kai was one day old, the pediatrician at the hospital found bilateral cataracts.  When Kai was five days old, we were told by the ophthalmologist that neurological issues often go along with congenital bilateral cataracts.  Our pediatrician cautioned us that there might be some sort of underlying cause tying all of his issues together.  We began making multiple appointments at Children’s Hospital in Denver with Neurology, Metabolics and Genetics.  When Kai was three weeks old, we saw a Metabolic specialist.  He examined Kai for about 10 minutes and then told us he thought it was highly likely that he had a rare metabolic disease called Lowe Syndrome.  Once we discovered what that was, we were devastated and in shock.  As we learned what all this syndrome encompasses, we began to ask ourselves if we were the right parents for Kai and if we were equipped to give him all that he needs.  We also began to take a serious look at what changes would need to take place in our lives as we began the journey of parenting a child with severe special needs.  And all along as we asked ourselves these questions, we knew we had a choice to make.  From the day the cataracts were found we had doctors and adoption social workers asking us if we wanted to continue to move forward with the adoption, and now three weeks into it we were starting to ask ourselves the same thing.  When Kai was 5 weeks old, his diagnosis of Lowe Syndrome was confirmed and we knew that it was time to make a choice . . . a choice that we had been struggling with for several weeks already.  We shared with a few, sought counsel and wisdom from those we respect and talked with parents of kids with severe special needs.  In the end, I think our pastor gave us the best advice.  His advice was to pray for wisdom and discernment to know what God is calling us to do and to bring everything to God. . . our confusion, anger, fears, all of it before God.  There is obviously no easy path.  Both choices are excruciating and seem unbearable.  We prayed that God would show us what he is calling us to do with this child at this time.  Perhaps we were to raise and take care of Kai for the remainder of his life or perhaps we were to take care of him for now.  I don’t think I can begin to tell you what the past 7 weeks have been for us.  We have struggled, wrestled and grieved over this agonizing choice that we have to make.  And after much prayer and many tears, we have decided to let Kai go.  While this decision brings us unbearable pain, we are at peace with this decision.  Some may not understand our decision; some may not even agree with it but we are at peace. We truly love this little boy and we are doing what we believe is best for him and for us.

One blessing in the midst of this heartache is a Christian organization that specializes in special needs adoptions.  Our social worker had told us there were families ready and waiting to adopt kids such as Kai . . . families who feel like it is their gift and calling.  There are over 500 families waiting for special needs kids at this organization alone; and ironically (although we didn’t know it at the time), just a few days before we made our final decision, a family called this organization asking if there were any boys with Lowe Syndrome available.  They had lost their son to Lowe’s and wanted to adopt another affected boy.  Within hours of our agency’s first call to this other agency, they had multiple families sending in their profiles ready and waiting to adopt Kai.  The final decision on which family he will go to has not yet been made; but just knowing that there are over 20 Christian families who feel called to special needs kids and want to adopt Kai has brought us so much comfort in the middle of such a heartbreaking situation.

Our adoption agency will help us continue the adoption journey but this is not about giving Kai up so that we can adopt a healthy child instead.  It’s about making the best decision for Kai and for us. He will always be a part of us and we know that this part of our story has changed us permanently.

Lowe Syndrome is extremely rare (there are currently just over 400 reported cases in the world).  Kai will have physical challenges, he will be mentally challenged, and he will have behavioral issues (from what we have heard from the physicians, this is the most difficult part of the syndrome with most behavioral issues being practically unmanageable).  Kai’s life span will be approximately 30 years if he has no complications; and he will need care for the remainder of his life.  For those of you who are curious about what exactly Lowe Syndrome is, here is a link to the most accurate information on the disease: http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=lowe (a bit scientific but much of it is understandable).

Please pray for us, Kai, his new family and his birth mom who has of course been devastated by this news.  Thank you for your prayers.

Russ & Rebecca