I can’t wait until the smell of iodine, and the rough scabs are gone completely. I can’t wait until I can stretch a frilly pink bow across her head, or make swirls in her hair with a soft brush along the front. I can’t wait to take her out in public without the wonder of strangers’ wondering. No, I did not drop her. No, she did not fall when I was negligently ignoring her need for safety. No, I did not leave her out in the front yard where the neighbors rabid dog attacked her. 


But who thinks of cranial reconstruction? No one.



We had a visit with the Geneticist yesterday. He said he was pleased with her development and happy to see her doing so well. We chatted about the spectrum of Apert’s Syndrome and how Poppy seems to (thankfully) fall on the milder side of the syndrome. He was impressed with her rapid healing and commended my mother and I for our knowledge and attentiveness to her complex needs. After we talked about her upcoming hand surgeries and how she has the potential to do everything with her hands that everyone else can do, she reached out and grabbed his tie several times – proving she already could:)


The last 6 months are catching up with me and I am finding myself tired and emotionally full. This little slice of time seems so surreal and delightful that it’s hard to stomach thoughts of the past or future. So, simply – I am not. I am living in the right now and letting the dust settle where it will while the next storm begins brewing. I am okay with taking life a teaspoon at a time, rather than trying to down the whole sticky mess at once.



We are finally settling into a routine after our third hospital homecoming. This includes solid foods, nursing every 2 hours, bedtime bath, brother story-time, and a 2 hour stretch of staring at her sleeping in my arms before I finally call it a night. She does still wake screaming at least once a night, but is consoled rather quickly and settles back to sleep without any major interventions. 

She certainly runs our lives and calls all the shots right now, but someday I will take a bubble bath, I will take a nap, and I will sit down and eat an entire HOT meal without getting up once. Someday. I don’t mind the demands, though. The payoff is miraculous.








4 responses to “the now”

  1. craniomumdana2012 Avatar

    feelings i understand completey… xxx


  2. craniomumdana2012 Avatar

    p.s love the foot on the breast posture. 🙂


  3. Joyce Lee ,,,,,,,,,,,,,,,Carol's sister ) Avatar
    Joyce Lee ,,,,,,,,,,,,,,,Carol’s sister )

    Bless your heart , Noelle , you know God has special parents for babies with so many problems , as yours has , your reward will await you in heaven , and maybe sooner , with a complete recovery of Poppy’s surgeries & set backs , but know that God has rewards for you here on earth & into eternitity, just” keep on keeping on ” one teaspoon at a time , thats the way you make thru each day , will be praying for you & for your baby ,,,,,,,,,,,,Joyce Lee (
    Carol’s sister )


  4. Judy Shattuck Avatar
    Judy Shattuck

    You are so talented with words and that comes from deep inside and reveals your true nature. You are such a blessing to your children! Your poem about Poppy’s passing was deeply felt. I will continue to pray fo Poppy and the rest of the family.


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