The FDA approved Kalydeco, a drug previously known at VX-770. So many in our CF community are ecstatic! The day felt like it would never come but it is here. For many, this is the hope they have been waiting for for their children.
Oh, their joy! I can't even imagine what I would feel like to be in their situation - if I found out Bennett had the opportunity to slow down his disease and extend his life. What an amazing feeling it must be!!
But, as I read these comments and felt the excitement filling up the hearts of our little CF community, I found myself sort of sullen and withdrawn.
Why, I wondered, would I feel withdrawn and sullen on such a wonderful day as this - the day when so many of my friend's children are getting a chance at living their lives without this devastating disease? Wouldn't I be dancing in the street and overjoyed for them as well?? Don't I, being a mother with a child with CF, most understand the desperation and immense joy they feel to have something like this for their child?
And then an image came to me.
I can imagine this must be what it feels like to be with a group of people stranded on top of one's house while the flood waters rise around us. Everyone is in it together. Everyone is wet, cold and frightened. There is no guarantee we will be found. But we try to hope.
In an effort to be found, we call out together and chant, "Help us! We need help!" We cry with each other knowing that we may not be saved in time.
And then, in the distance, we see a helicopter! Someone see us! They are coming! We all cheer with anticipation. Hooray! We will be saved! We watch the helicopter approach us, each of us begins to dream what it will be like once we are saved.
But as the helicopter nears, we realize, there isn't room for all of us. Not yet. Not now. And so, only a few of us get to aboard the helicopter. We pat the backs of those who get to get on - and we tell them how excited we are for them.
But there is an emptiness that begins to fill in our hearts: We wish we could go too.
The good news is that we have been found and may soon be rescued. But the bad news is some of us must wait much longer to be saved. Those of us who are left behind much watch the helicopter take off again, without us.
We each silently wonder, will the helicopter return in enough time to save us too?
I am so very happy about this drug. The work of the Cystic Fibrosis Foundation is amazing and this drug is just proof that we are on the right path to finding a cure. I know that there are other drugs in the pipeline that may hold the key to helping Bennett one day in the future.
But I must be honest that in the midst of the excitement, I can feel sort of disappointed that I'm not one of those mothers clicking the keys on my computer and placing on my Facebook status that my baby has a chance at a normal life, too.
For now, my son's disease will continue to wreak havoc on his body while we wait. And he is certainly not alone. This is the case for the 96% of those with Cystic Fibrosis who must wait a bit longer for help to come.
But I also realize that I can't focus today on how the helicopter just came and left - on the fact that this drug (as wonderful as it is) won't help Bennett. First, because I don't want to take away from other's joy. But secondly, and most importantly, because...
I must remember that I'm not necessarily waiting on a helicopter (or a pill) at all. My trust and hope is in God.
I must remember that God is a good God. He is a God who will leave 99 sheep to go find that 1 lost sheep. God will not forget Bennett or my cries to him on behalf of Bennett.
I must remember, even in my disappointment, that whether a pill comes in enough time for him or not, God has Bennett in his hands. God will one day heal him too. Until then, I choose to patiently wait.
May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13