Saturday, February 11, 2012

The long road ahead

Cori and I continue to be amazed by the deluge of support we've received from all of you. In the few days after my last message, well over a hundred responses poured in, most of which contained statements like, "Wyoming is praying", "Kansas reporting for prayer duty", or "Please add Florida, North Carolina, Washington DC, Wales, England, Scotland, and Japan to your list". Perhaps it's silly to get hung up on numbers, but I've found a great deal of comfort in knowing that our prayer support is so widespread. In case you're curious, I now know of people praying for Sophia in 49 of 50 states (It seems I have no contacts in West Virginia that I know of), and 32 foreign countries.

While the scope of our prayer support is staggering, it's still been a very hard few weeks, and if our doctors are to be believed, the hardest weeks are yet to come. Many of you have told me how impressed you are with how we're handling this situation, using terms like "strong" and "brave". While I certainly hope to be both of those things, it's important to remember that the verbiage of my e-mails is carefully chosen, and isn't an accurate representation of what I'm actually feeling most of the time. I think that maybe a more candid account is in order. I'm going to tell you what I really feel, and I hope that in some way it will help each of you to know how to pray. Here we go.

Previously negligible events have acquired the ability to provoke a substantial emotional response as of late. I'm pretty sure I never used to cry over diaper commercials. Overhearing a stranger planning a baby shower didn't make my heart sink three weeks ago. Cori and I had talked on several occasions about which room might become the nursery, but those talks had never left me dejected before. It's remarkable how many innocuous things have become caustic in the last few weeks.

I struggle daily with "Is is worth it to..." questions. Our son wears cloth diapers, and we had planned on buying more for Sophia. Is it worth it to spend money on the diapers if we may never get to use them? Cori goes to a large local children's clothing sale twice a year. Is it worth it to buy infant clothes when we're being told that Sophia probably won't live long enough to wear them? We had worked out a rough plan for the nursery just a few days before the Trisomy 18 diagnosis. Is it worth it to decorate our daughter's room when we know that she may never get to come home and see it? Never mind the money or the effort of any of these things... Is is worth the possible emotional pain of coming home to an adorable nursery full of diapers and clothes, but without Sophia?

Additionally, how do my answers to those questions reflect on my faith? I say that I believe God can do anything, even heal my broken little girl. That said, I've looked at hundreds of memorial pages on the internet created by parents of Trisomy 18 children. Most of them prayed for a miracle too, and all of their babies are gone. If I say it isn't worth it to decorate the nursery or buy new diapers, does that mean that I don't really believe that God will heal Sophia? Does it mean that I don't really believe that he can? Is God's willingness to intervene impacted by my faith, or my lack thereof?

Some of you may know that our daughter Isabella is a former cancer patient. Many of you prayed for her when she was diagnosed with sarcoma just one day after Brady was born. After the cancer diagnosis, Bella's doctors laid out a very clear plan for her recovery. "We're going to do this surgery here, and if it doesn't work, we'll try that procedure over there, then this, then that, etc, until we either win or we lose." Sophia's diagnosis is wildly different. The plan is just, "We lose". That's hard for me to wrap my head around... It's confusing and surreal to have a tragedy put on my calendar for me. It sometimes feels a little like I've managed to get on the wrong subway car. The next stop is somewhere I don't want to be, but I can't make the car go anywhere else and I can't make it slow down.

Cori and I know that the road ahead is very long and likely very painful. For our daughter Sophia, we fear that the road may not be long enough. Your prayers (and those of the thousands of others who continue to pray all around the world) are greatly appreciated. Thank you.

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