Sorry we haven’t updated in a few days. As always, it’s been some pretty intense ups and downs for us.
We were hoping to bring Lydia home tomorrow, but on Sunday she had several substantial seizures. They had to give her breaths because she couldn’t breathe on her own for three minutes. We’re trying to get some answers about her medication and possible stability before we try to bring her home. The waiting is killing us. Leaving her every day is painful. We just want her to be here with us. Nothing is that easy. Please keep praying that God would make clear the path to bring her home.
Meanwhile, here are some thoughts from Micah that sum up a lot of how we’re feeling these days:
“Yesterday we were overwhelmed by C.S. Lewis.
We have been reading the Chronicles of Narnia to our baby girl over the past month, and have lately been reading The Horse and His Boy.
I won’t give away the story, but there comes a place in the book where the main character, Shasta, comes face to face with the Lion, Aslan, who Lewis often uses to picture Jesus. Although they are fictional books, Lewis works in a great deal of theology, and so they bring me face to face with both my faith and my grief, and the gap that exists between the two.
In the book, Shasta begins asking Aslan all about his own life, and the Lion shows how He has faithfully guided the life of this young boy. The fact that he did not realize Aslan’s presence did not make it less real. Once Shasta understood his own story, he began to ask about how Aslan has been active in the lives of his friends, and Aslan says “I tell no one any story but their own.”
We want so desperately to know the story of Lydia’s life. We want to understand why she is the way that she is. We want to know how it brings glory to God for her to be in the hospital day after day, and to work so hard to breathe. Someday, we will get to ask her about it, and we’ve already gotten hints about how her life has affected others.
I suppose it’s human nature to want to find purpose in these times, but we are struggling to find one.”
Despite our lack of understanding, what we DO know is that just as Lewis says about Aslan, though He might not be safe and predictable or comprehensible, our God most certainly is good.
In August of 2009 God changed our lives by giving us a beautiful little girl. Lydia was born with Zellweger Syndrome. Lydia went to be with Jesus in April of 2010. This is the story of her life and death, and of our journey through grief in search of healing.
I was behind on your blog and I sat down with a cup of tea to catch up on your little Lydia. My heart is completely broken. I have been praying for you all and was so sad to read of her diagnosis. So many memories of my girls were stirred up in your recounting of the situation. I have been in tears all morning. I will not express all my thoughts here but I will say that a gap does exist between this world and the heaven that waits for us and Jesus stands in that gap. For whatever reason our little girls are being usherd over that gap more quickly than us...and although we know of the goodness and perfectness of our God, we suffer in the gap with the pain of grief and lack of understanding of the purpose of our suffering and the suffering of our sweet babies. And Christ suffers with us there, holding us up, promising to usher us through also, albiet more slowely than we would prefer. We do not stand in the gap, we find ourselves being held there, by two arms most definately strong enough to bear this burden as they once held all the sins of the world. This is pain beyond measure, grief beyond comprehension, questions without answers...I have walked in your shoes and know only one thing as I emerge from the grief that I have endured...Jesus carried me. He carries me still. I love you and am covering all three of you in prayer.
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