Friday, February 26, 2010

A Hope That Does NOT Disappoint!

And this hope will never disappoint us, because God has poured out his love to fill our hearts. He gave us his love through the Holy Spirit, whom God has given to us. (Romans 5:5, NCV)

When our son, Charlie, was diagnosed with severe hemophilia A immediately after his birth, we found ourselves quickly swept into the stream of looking for the positive ahead. The standard of care at the time he was born dictated that eventually a portacath would be inserted in his chest to provide access for the infusions of clotting factor he would need to be given 3 times per week or more. As our treatment center used an approach described as "secondary prophylaxis", we would need our son to have a joint bleed prior to having that port placed. Until that port was placed, we would need to bring him to our local children's hospital for infusing, which was always 3 hours out of the day when the trip was a quick one. Oh, how our sights were set on having that port placed! That was our hope of a reasonably "normal" life because once the port was placed, we could infuse at home.

Being a very active child, Charlie ended up being a very active bleeder from early on. I would make trips to the hospital 2-3 times a week with him. Hoping we could have the port placed because we were already having him infused as if he were on prophylaxis, we requested the opportunity to move forward with the procedure. Both because he had not had his first joint bleed and because there was a shortage of clotting factor at the time, we were denied our request. Our hopes were dashed as we continued the stressful treks to the hospital, never knowing when they would occur.

Eventually, we made the decision to skip placement of a port and moved to home therapy using peripheral venipuncture. When we got to that step, our hopes moved towards the talks of a cure for the disorder. Gene therapy was the talk of the community as diagnoses like hemophilia and cystic fibrosis were obvious candidates for researchers. Things looked exciting as human trials were being conducted. Suddenly, all hopes in gene therapy were dashed as trials halted due to a human fatality.

Over the following years, I was invited to engage in legislative advocacy for people with bleeding disorders. On several occasions I traveled to our nation's capitol visiting with congressmen and senators on issues of concern. Each year I would see families hoping to get a piece of relevant legislation passed only to face frustration and discouragement as things got hung up in our messy federal government. One law that both sides of the aisle agreed was good found itself on numerous occasions attached to another law that was not so good, thereby assuring its demise.

Why do I share these stories from our journeys with hemophilia? I want to make it clear to each of us parents that there is nowhere in this temporal world where we can or should hang our hopes - not in treatments, not in cures, not in legislation. People disappoint.

Remember, Jesus told us in John 16:33, "In this world you will have trouble. But take heart! I have overcome the world." Not only do the words of Jesus remind us that we should expect trouble and disappointment in this life, but they also remind us where our real hope should hang! The God who was big enough to overcome the grave is surely big enough to overcome hemophilia or any other challenge in life. He promises that in heaven, "He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away." (Rev. 21:4, NIV) That's the kind of place I want to hang my hope!

The best gift I can give my children is to direct their hopes to a place that will not disappoint. The challenges of this world are rough enough as they are. Eyes directed heavenward will have assurance of that joy without a doubt!

1 comment:

  1. Thank you for the much needed reminder of where my trust truly needs to rest.