Everyone says how well she is healing. And it is true… but…

She is healing from major cranial reconstruction surgery. She is anxious. She cannot sleep without touching me. She wakes up screaming. She has a stitches, scabs, dried blood, and glue caked along a snake-like incision from ear to ear.

Sometimes I have to acknowledge the dark under-belly. Staying positive all the time is taxing. The truth remains the same day after day – no matter how resilient, beautiful, miraculous, and brave she is – it still sucks. Perhaps I imagined that the whole world would stop for her, just long enough for her to catch up, for me to catch up, too. It could be that I am angry.

Angry that time just ticks on and on and somewhere in it I gave birth to little girl with some special needs.
Angry that from the moment of her birth I have been in absolute fear.
Angry that the first six months of her life, I have been so stressed out about things that now seem foolish.
Angry that every time I leave the hospital with her we already have two return dates in hand.
Angry that she looks different now and I can’t seem to get over how tragic it feels inside.

However, I am so thankful that she is over this hurdle, she is on the mend, and I am still able to stay by her side 24 hours a day. I am not a pessimist. I am not a whiner, complainer, downer, or the likes. I am just feeling my way through a very big swamp-like pool of happenings. It’s hard to tell where I can touch, and where I can’t.


We have moved to paradise. Kieran adores it and is really flourishing with the move. Poppy seems much more content on an overall level. Though her anxiety and sudden screams are hard to handle, the constant screaming has almost ceased completely. I wouldn’t say that she doesn’t cry often – but she is consolable now. This is huge.

We are surrounded by nature, nurturing folk, and love. This house is perfect for my little family to grow up in. I cannot imagine a more perfect place to be. I have to keep reminding myself that there will be time in the future to clean and organize and rearrange. Right now all I need to do is rock my baby on the front porch and listen to the creek babble.

One thing I am absolutely sure of : my gratitude to SO MANY individuals over the last 6 months. Perfect strangers, friends, family – all of you have been, and continue to be, an enormous source of strength and stability. From dinners and moving help, to donations to Poppy Seeds, your kindness has been shining through the murky waters. Thank you! For those of you who have asked how you can help – simply share her story and website.

I will still try to update as often as possible. The past three weeks I have rarely set her down long enough to write a complete sentence. For now we look on to her next upcoming (hand) surgery in a few months and then pray for health and a significant break in the trips to the children’s hospital. While it is a phenomenal hospital, I have seen all I care to of it for a long while.


One response to “three weeks post op”

  1. craniomumdana2012 Avatar

    U both are inspiring… The challenges we face as mums to these gorgeous kids will perhaps never end but we meet them and successfully overcome them as they come into our lives… Writing our blogs will reminds us in years to come just how strong and loving we where… we are. xxx


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