Quick update during week 23
Today we had two appointments which we were looking forward to and dreading at the same time. We don't dread situations like these for any other reason than they force us to talk about things we don't want to talk about - things we never thought we'd talk about, especially now - like where and how we will memorialize Simon (funeral, burial, etc.).
We met with Patty, the found of Alexandra's House, early this afternoon. Patty has an amazing heart for families with babies with fatal diagnoses, and she also has an amazing heart for Christ. We had an awesome discussion with her, although it was tear-filled. Alexandra's House should be a great resource for us to meet other families that have gone through, or are currently faced with the same situation.
Amy and I had an hour to kill between Alexandra's House and our appointment with Amy's OB, so we sat and chatted at Starbucks. Although we don't feel like we have made much progress, we were able to settle on a few things regarding how we want the labor and delivery to go (at least the small bit we can control, anyway).
We met with our OB who told us she had only seen 4 Tri 13 babies while in residency, and none since she has been in private practice. She isn't very old, but we would have thought she might have seen at lest a couple babies with the same condition in the last decade or so. The fact that she hasn't seen Trisomy 13 only reminds how truly rare this disorder is. We were able to hear Simon's heartbeat, which seems like a privilege these days. Amy and Simon's growth seem to be within the normal range, so there continues to be no concern there. While the doctor's meeting did not give us any new information we didn't already have, we were able to continue to develop an idea of how the next weeks and months could play out. We have loosely formulated plans A, B and C... but of course a lot of uncertainty surrounds these plans. We know that Simon will not make it, but we just don't know when we will lose him. The unknown continues to be one of the greatest challenges of this situation.
Amidst the confusion, Amy and I have been getting a lot of comfort from Isaiah 55:8-13 lately.
For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts. “For as the rain and the snow come down from heaven and do not return there but water the earth, making it bring forth and sprout, giving seed to the sower and bread to the eater, so shall my word be that goes out from my mouth; it shall not return to me empty, but it shall accomplish that which I purpose, and shall succeed in the thing for which I sent it. “For you shall go out in joy and be led forth in peace; the mountains and the hills before you shall break forth into singing, and all the trees of the field shall clap their hands. Instead of the thorn shall come up the cypress; instead of the brier shall come up the myrtle; and it shall make a name for the Lord, an everlasting sign that shall not be cut off.”
The comfort comes from being reminded that God has orchestrated all of this. And we don't have to understand it. This rainstorm will bring forth new life. Simon's death will not leave any of us feeling empty, but his short life will have amazing purpose in showing God's love to more people than we could have ever touched without him.
~Adam
We met with Patty, the found of Alexandra's House, early this afternoon. Patty has an amazing heart for families with babies with fatal diagnoses, and she also has an amazing heart for Christ. We had an awesome discussion with her, although it was tear-filled. Alexandra's House should be a great resource for us to meet other families that have gone through, or are currently faced with the same situation.
Amy and I had an hour to kill between Alexandra's House and our appointment with Amy's OB, so we sat and chatted at Starbucks. Although we don't feel like we have made much progress, we were able to settle on a few things regarding how we want the labor and delivery to go (at least the small bit we can control, anyway).
We met with our OB who told us she had only seen 4 Tri 13 babies while in residency, and none since she has been in private practice. She isn't very old, but we would have thought she might have seen at lest a couple babies with the same condition in the last decade or so. The fact that she hasn't seen Trisomy 13 only reminds how truly rare this disorder is. We were able to hear Simon's heartbeat, which seems like a privilege these days. Amy and Simon's growth seem to be within the normal range, so there continues to be no concern there. While the doctor's meeting did not give us any new information we didn't already have, we were able to continue to develop an idea of how the next weeks and months could play out. We have loosely formulated plans A, B and C... but of course a lot of uncertainty surrounds these plans. We know that Simon will not make it, but we just don't know when we will lose him. The unknown continues to be one of the greatest challenges of this situation.
Amidst the confusion, Amy and I have been getting a lot of comfort from Isaiah 55:8-13 lately.
For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts. “For as the rain and the snow come down from heaven and do not return there but water the earth, making it bring forth and sprout, giving seed to the sower and bread to the eater, so shall my word be that goes out from my mouth; it shall not return to me empty, but it shall accomplish that which I purpose, and shall succeed in the thing for which I sent it. “For you shall go out in joy and be led forth in peace; the mountains and the hills before you shall break forth into singing, and all the trees of the field shall clap their hands. Instead of the thorn shall come up the cypress; instead of the brier shall come up the myrtle; and it shall make a name for the Lord, an everlasting sign that shall not be cut off.”
The comfort comes from being reminded that God has orchestrated all of this. And we don't have to understand it. This rainstorm will bring forth new life. Simon's death will not leave any of us feeling empty, but his short life will have amazing purpose in showing God's love to more people than we could have ever touched without him.
~Adam
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