I've been reading a bunch of other blogs lately, particularly ones where the mother was diagnosed in pregnancy as having a baby with Skeletal Dysplasia. Some of these blogs have a good outcome, others sadly don't. One blog which I LOVE is Loving Little Leah. Leah had a lethal form of Skeletal Dysplasia called Short rib polydactyl syndrome (isn't it crazy, probably 99% of us haven't even heard of such a disease) and spent 45 minutes with her parents before she went to heaven. Leah's parents, Amy and Jeff, have such an inspiring attitude through all this - and sooo many of their posts have such great stuff in them. I wanted to share one in particular though.
When we saw our daughter she was so beautiful, it was hard to understand why she couldn’t live. I knew that her little chest was too small. I knew it couldn’t hold healthy lungs, that she didn’t have functioning kidneys, that she was too small and so weak, but it didn’t connect at all with the full picture...her chest didn’t seem that little, her body too weary. She seemed so perfect.
Leah’s little body was distorted enough to cause death, but not enough to make her seem anything but lovely to me. Her creation stunned me in the moments that I saw her. She came out of me. Marvelous. Incomprehensible. Amazing. We rejoiced in how wonderfully she had been made.
Yet my beautiful child was suffocated by her skeleton, a deformity lurking inside her that prevented her from having the full and happy life I longed for her to have.
I don’t presume to know the mind of God, but I do think that becoming a parent has helped me comprehend his character as a father more fully. I wonder, as he looks upon me, as I looked upon my child, does he feel the same thing? Love for a creation so beautiful and yet so inwardly crippled, longing for his child to live fully in him, unhindered by the deformity of a sinful nature?
Leah’s little body was distorted enough to cause death, but not enough to make her seem anything but lovely to me. Her creation stunned me in the moments that I saw her. She came out of me. Marvelous. Incomprehensible. Amazing. We rejoiced in how wonderfully she had been made.
Yet my beautiful child was suffocated by her skeleton, a deformity lurking inside her that prevented her from having the full and happy life I longed for her to have.
I don’t presume to know the mind of God, but I do think that becoming a parent has helped me comprehend his character as a father more fully. I wonder, as he looks upon me, as I looked upon my child, does he feel the same thing? Love for a creation so beautiful and yet so inwardly crippled, longing for his child to live fully in him, unhindered by the deformity of a sinful nature?
4 comments:
I made it through reading all of that without crying until I read the part about all of Leah's life was spent being held by people who loved her, and with sweet words whispered in her ears. So sweet. Love their lil' boy, Tommy!
Oh I've cried soooo much reading that blog - particularly the early posts about her pregnancy and all. I can identify with a lot of it - but her pregnancy was much more "high-risk" than mine... it helps put my struggles into perspective...
Here from LFCA. I can only imagine what this must be like for you, and I really admire your attitude, optimism, and determination. You will be a wonderful mother in handling your daughter's special needs. Praying for you both.
It definitely does help to read the stories of others going through something similar. It helped me!! They are inspiring!
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