a gift

“The appropriate response to a gift is gratitude”
-Nancy Guthrie

After my third baby, I stopped writing out a “birth plan.” I had a few things I instructed Bryan to push for–let’s keep the baby alive and healthy, try  not to c-section me, and I’d like to hold her ASAP. Oh yeah, and get me out of this hospital as soon as I can walk!

Yesterday, at my 28 week appointments for Kit, I was told the birth plan–there’s going to be more than a dozen people in there when she’s born–pediatricians, cardiologists, obs, half the hospital–we’ll hook her up to an IV of medicine right away, and I might just get to squeeze her hand before they run away with her to the CICU for tests and medicine. Then we will be there one week, maybe two, maybe a month…

I knew from the moment she was diagnosed that I wouldn’t get to hold her right after she was born, but that was still hard to hear. The way things are planned to go–this is best case scenario planned!–will be so wildly different from my other girls. No quiet cuddling in our room after delivery, no nursing right away, no hoards of family and friends coming by to visit. She’ll be born straight into emergency. Then hopefully we will find out if they think she’s got a chance to live.

Some days I feel so deeply sad about Kit, and sad that I have to carry her an entire pregnancy not knowing if she’ll live very long afterward. It can feel meaningless, even cruel.

I know though that God is not cruel. And Kit is alive right now–completely alive!–listening to her sisters giggles and shrieks, to her daddy play guitar, to my stories read aloud every night.  Her life is a gift, even if it is mostly spent hidden away in my life, and instead of despair, I need to respond in gratitude.

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To My Children, Fearing for Them

by Wendell Berry

Terrors are to come. The earth
is poisoned with narrow lives.
I think of you. What you will

live through, or perish by, eats
at my heart. What have I done? I
need better answers than there are

to the pain of coming to see
what was done in blindness,
loving what I cannot save. Nor,

your eyes turning toward me,
can I wish your lives unmade
though the pain of them is on me.

let it happen

I felt like I’ve been doing so much better this week…less crying, less time spent reading medical articles for all the outcomes. but when I had a friend over for our kids playdate and was telling her all my preparations and worries–homeschooling the girls this fall, what to bring to the NICU, etc etc etc, she stopped me and said, “you know you can’t control all this, right?”. I think I spent the rest of the playdate just crying–she had other wise words and encouraging words to say, but what struck me the most was that I just need to let this happen.

The day we got the diagnosis (the first horrible ultrasound where the doctor offered us the option to terminate), bryan was checking email that night and listened to a new song by Switchfoot (his favorite band), called “Let It Happen”–“tomorrow holds what tomorrow holds, can’t make it get here faster”. Last week, listening to a talk from the 22q family foundation, their keynote speaker (a successful news reporter who has 22q), in response to a random question about his father’s death, said he had to “let it happen.” and then today, when my friend told me the same thing, I just broke down.

Research is helpful and comforting to an extent–I’m informed, I know what to ask, I’m less scared of the unknown. But research won’t help me control this situation–I can’t stop this from happening. I need to accept help when people offer it–this isn’t something I can deal with by myself.

Underneath all of it, I have been truly believing that she is going to die. Or worse–live a little while, a short life of suffering, then die. I haven’t let myself believe that she might live. That I could bring that baby girl home.

The week of the diagnosis, I put all the hand-me-down baby girl clothes in her drawer, to try to make myself hope. But I saw we had only 3 newborn sleepers and thought “what’s the use, she’ll never wear them.” I can’t go through the rest of this pregnancy, with this little baby kicking in my womb, completely believing that she isn’t going to live. I need to buy this baby some clothes, and decorate her nursery, and not think about her like she is already gone because she isn’t.

(and here’s Bryan’s cover of Let It Happen)