Instead of doing one of those “year in review” posts, I’m going to talk about something else. Often, when we tell Namine’s story, the response is pity of some kind. Another common response is “why?” Why should Namine have to suffer these things? What did she do to deserve such a life? What did we do to cause her such a beginning? Or is she merely the victim of random happenstance, the living evidence of life’s cruel injustices? I suggest a third alternative: Namine did not just happen to take this shape; but she was made this way. To put it perhaps a different way, she was designed, with such precision and deliberation that this is how she was meant to be.
I was catching up on some of my faved tweets, and I came across something interesting. A website posted a list of top ten special needs quotes from this year, and one in particular caught my attention: “If a child cannot learn in the way we teach, we must teach in a way the child can learn.”
– Ignacio Estrada
Another day, another appointment. Today, Namine had her MRI to see the muscle structure in her abdomen. The goal, of course, was to see how her hernias might be repaired. And since she’ll be going under the knife again soon, might as well close up that hole in her stomach that we no longer feed her through. A fitting end to the year, I think.
In all the excitement about getting an MRI in preparation for getting her hernias fixed and g-tube removed, I completely forgot to post about Namine’s AFOs. The doctor said they would be ready sometime after Christmas, but I honestly didn’t expect them to be ready this soon. Nonetheless, Jess, my mom, my sister and Namine went to the orthotic clinic today to pick up the new AFOs.
Every day, we have to stretch Namine’s feet. Not only do her ankles need to be pushed back (they do not normally rest at a ninety degree angle), but her toes, which tend to curl forward, need to be pushed back as well. I’m not sure how much discomfort there is in the stretching, and how it might differentiate from actual pain. I do know that there is apprehension and mental stress as well, though. All of this contributes to a very unhappy Namine during her foot stretches, as well as adjusting the casts after the stretches are done.
This is one of those times where I think a little clarification is in order. With so many terms and abbreviations, even we get confused sometimes.
Perhaps you’ll recall that today Namine had an appointment to have casts put back on her legs, as her feet (particularly her right foot) are starting to curl noticeably. The appointment was attended, but the casts were not put back on. It’s both good new and bad news.
Today, Namine had what was probably her first genuine panic attack. The way this came about fills me with sadness, but it was not unexpected – neither what brought about the attack, nor the attack itself. I will say this, though: her perception of the hospital and her doctors should not surprise us. Not one bit.
Every night before bed we sing songs. Sometimes they’re hymns out of the hymnal, sometimes they’re lullabies, and sometimes they’re children’s songs. I decided to try to capture Jessica and Namine singing “Jesus Loves Me” to show you how Namine is starting to sign along with the song.
I would like to draw your attention away from Namine for a moment, in order to encourage you to pray for Anna. She has cancerous tumors in her abdomen, and she may not have long to live.