Walking the Unexpected Road

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Have you ever received a gift that was different from what you were expecting? When I was around 10, I asked for some robot LEGO thing for my birthday. I knew it was expensive and had no real practical application, but it was cool and I wanted it.

When my birthday finally arrived, I remember getting excited because one of the gifts in the pile was rattling. It had to be LEGO. Every kid knows that sound. But much to my surprise, I didn't find the robot LEGO I expected. Instead, that glorious, rattling package held a LEGO programmable camera system that interfaced with another LEGO kit I had. My parents were excited, but I was crushed. The robot kit had looked amazing! I could have made cars, a crane, or some other pointless thing. What I got instead was something that combined two interests of mine: a camera and LEGO. I wanted something that was fluff, but what I got was ultimately something that continued to fuel me towards a hobby that would turn into a career.

So often we think we know what is best for ourselves, we think we have an understanding of our needs. In reality, we often miss the mark entirely.

We can see an example of something similar in John 9:1-12:

As he passed by, he saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him. We must work the works of him who sent me while it is day; night is coming, when no one can work. As long as I am in the world, I am the light of the world.” Having said these things, he spit on the ground and made mud with the saliva. Then he anointed the man's eyes with the mud and said to him, “Go, wash in the pool of Siloam” (which means Sent). So he went and washed and came back seeing.

The
neighbors and those who had seen him before as a beggar were saying, “Is this not the man who used to sit and beg?” Some said, “It is he.” Others said, “No, but he is like him.” He kept saying, “I am the man.” So they said to him, “Then how were your eyes opened?” He answered, “The man called Jesus made mud and anointed my eyes and said to me, ‘Go to Siloam and wash.’ So I went and washed and received my sight.” They said to him, “Where is he?” He said, “I do not know.”

While the blind man was begging for the basics of his existence, Jesus had other plans, “that the works of God might be displayed in him” (verse 3). Jesus gave this man a much better gift than the one he was expecting. As I write, this, though, I can’t help but think of the broader implications of this miracle. Have you considered what was gained by this man suddenly being able to see for the first time, versus what was lost? You have a man, blind from birth, now with the ability to see. He suddenly has access to everything the people around him might have taken for granted, but by having his eyes opened, he actually loses what is familiar and is faced with the challenging, and likely scary prospect of navigating the unfamiliar.

For years I read this passage and looked at God's work being limited to the restoration of this man’s sight. What if the difficult road of understanding the visual world around him, integrating into society, and catching up on skills he should have learned decades ago is what demonstrates the work and glory of God in him just as much as the miracle of healing?

In these days of instant gratification, a long road of work that produces great character is not something that is celebrated, or something we’re taught to ask for, and we definitely don't see God’s blessing in it. We often cast our trials and struggles in a negative light, but the Bible has a different perspective:

Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. -- Romans 5:1-5

Like the man who was healed in John 9, I was recently confronted with a blessing that had bigger implications than what I was expecting.

On October 30th, 2017 at 11:59 am, my son was born. Within half-an-hour of his birth, we had a tentative diagnosis with 90% certainty that he had Down Syndrome.

For those who don't know, Down Syndrome is a genetic disorder that comes from having three copies of the 21st chromosome. For about 90% of people, it's just a random roll of the dice in how our DNA develops from conception. For my son it wasn’t random. Liam has Robertsonian Translocation. Translocation Down Syndrome affects about 4% of the population of those with Down Syndrome and has a genetic component. While my wife and I both have the correct number of chromosomes, one of us has a 21st chromosome that clings to a 14th. This means my wife and I are more likely to have children with Down Syndrome.

At first the news was difficult to hear. I was afraid of having a kid in the first place, but now with the knowledge Liam would need special care for his entire life, I was terrified. The litany of possible complications is lengthy. People with Down Syndrome have the possibility of issues involving just about every organ in the body, a higher chance of cancer, and mild to moderate mental disabilities. I was already worried about what kind dad I was going to be but now I was freaking out. How was I going to pull this off? How could we tread water let alone thrive?

That leads us to the last thing the blind man gained. A greater understanding of the community he already had and a new, awesome community waiting with open arms. The blind man already had the people who knew him as a beggar -- the people who would now get to know him as an able-bodied man who will need to learn new skills to work. But, he also had a new community of Christians ready and waiting to grow with him in his faith. These communities don't undo the road of work he has in front of him, but they will, without a doubt, help.

For us, the community we had already was the people of Foundation Church. I can't state enough how thankful we are for our church family. People have been so supportive, encouraging, and generous. People have given us more baby clothes, food, and support then we can wrap our heads around. Every day we are floored by the hearts of those that call our church home. The love we feel from those around us are a reflection of God’s grace, mercy, and love. I laugh thinking back to before we had Liam when I thought I appreciated the members of Foundation Church. Turns out I didn't even know the half of it.

The new community we gained is the wonderful network of families of children with Down Syndrome. Both the national organization (NDSS) and the local community, Down Syndrome Association of Snohomish County, have been amazing. The information, research and studies, resources, and tips are so readily available and accessible because of the generations before us. I love the saying, “standing on the shoulders of giants,” and it's an understatement to call the families before us giants.

Today, March 21st, is World Down Syndrome Day. I think we can all agree that culturally, this world is not doing well. What you may not know is the Down Syndrome community is taking a major hit. Countries like Iceland, England, France, Denmark, and Sweden are proudly approaching the ability to say they are “Down Syndrome free” country-wide. They are doing this through the means of abortion. With the help of prenatal genetic screening that identifies babies who have a high chance of a genetic disorder, parents are being pressured to terminate the pregnancy for the sake of “societal good”. It pains me to type these words.

In contrast, we have some amazing progress in the United States. While Planned Parenthood is boasting they performed 300,000 abortions a year (https://www.washingtontimes.com/news/2017/may/30/patients-down-abortions-planned-parenthood-report/), in 2018 none of those performed in Ohio will be someone with Downs. Last year that state passed legislation making it illegal to abort a baby if it is known to have a genetic disorder. Indiana and North Dakota have similar protections on the books, and Utah is right behind them (https://www.dailywire.com/news/26197/utah-may-become-5th-state-ban-abortion-down-paul-bois).

For children born with a genetic disorder, the principal diagnosis isn’t the only worry. In addition to Down Syndrome, Liam has a major heart condition. In just a few short weeks he will have open heart surgery at Seattle Children's Hospital to repair a valve and two holes in his heart. As scary as it is facing this, we trust God. We know He will do what brings Him the most glory, and that we have the best two communities around us anyone can ask for.

I know our church family has the desire to do or say something to help. While it is all appreciated, our one request is prayer.

We have nothing but love and faith in the sovereignty of our Lord, and we rest in that. But we also know that God wants his people to be active in their faith.

  • Pray for the doctors and staff involved in Liam’s operation.
  • Pray for Liam that he is strong and recovers quickly.
  • Pray for people with Down Syndrome, that they grow to bless those around them.
  • Pray for the families of people with Down Syndrome to have the patience and tools to raise them well.

Pray for politicians worldwide to come to an appreciation and understanding of the amazing blessing people with Down Syndrome are.

Like the blind man in John 9, we are in awe of our gift of Liam. My wife and I embrace the challenges, we embrace the complications, we embrace and rejoice in this blessing God has given us. And it is our hope God uses Liam so that the works of God might also be displayed in him.