I put Evelyn on her stomach this morning and she held her head up for five seconds, before collapsing, exhausted and crying. I celebrated. Five seconds. Maybe as much time as it’s taken you to read this. That’s how long her head was off the ground for and that’s what I was celebrating.
Oh how the goal posts have shifted.
I flipped her back over and picked her up, snuggling her into my chest. She looked at me with her huge wide eyes as if to say “what the fuck did you even put me down there for you tortuous milk woman” and I stroked her hair and held her close.
She held her head up for five seconds and oh, I wish I had a photo of it because for a moment there, she looked so strong and so normal and I wanted to cry. I might have cried. Briefly. Damp eyes. You can’t prove anything.
It must have exhausted her because she then went on to nap for four hours.
Ups and downs.She’s almost 19 weeks old.
She woke up and I nursed her and her eyes stopped working for a bit, which frustrated us both, because how can I make her smile easily when she can’t see me and “holy fuck the world has just gone dark again, I can’t say I enjoy this, hold me close and rock me milk woman.”
That’s been my day. My week even. The next few weeks are peppered with doctors appointments. I’m expecting to be thoroughly exhausted by the time Christmas rocks around, but who knows?
Today Evelyn held her head up for five seconds.
And that is enough.
Comments
19 responses to “The goalposts have shifted. My how they have shifted.”
That is wonderful news!
small wins. Our lives are full of them, you and I. Yay for Ev.
Small steps tiny victories.
Oh V 🙁 every time I click through to your blog I hold my breath hoping for good news or really any news that will give YOU answers and then hopefully a pathway to take, so you at least know in which direction you guys are heading in.
I’m sorry that this is so hard. I can only imagine just *how* hard each and every day is for you, Evelyn and the rest of the family and so posts like this are totally understandable. Five seconds is everything.
Sending you much love as always xxx
I believe in starts.
What a wonderful thing!!
It is wonderful to hear of her holding her head up.
But also so heartbreaking to hear how much it exhausted her.
Will be thinking of you at these drs appt, hoping like hell they have some answers.
Do you have a geneticist that you see regarding the EDS? I really do wonder if Evie’s problems are somehow EDS-related. EDS can cause cervical instability and would definitely make it difficult for Evie to support the weight of her head but I’m not sure how visible the instability would be on a supine MRI and it would probably be difficult to perform functional X-Rays on her at her age. An upright MRI could possibly show more but unfortunately the only upright machine is in Sydney.
My little brother (who also has EDS) lagged behind in terms of developmental milestones. He caught up in the end though and now I’m the one who has difficulty keeping up! I sincerely hope the same will be true for Evie.
Congratulations on NaNoWriMo! 🙂
It doesn’t matter if she can hold her head up for five seconds or five minutes, there is a beautiful little soul inside that little body. Her sharp mind and big heart shine out of all her photographs.
I’m shedding tears of joy for your 5 seconds.
HUZZAH!
Wonderful news! I am a bit teary-eyed for you. Sometimes ‘enough’ is enough…. and I love what Glowless said. I also believe in starts.
(and Veronica, I wanted to let you know that I have started a personal blog again… it’s nothing at all like Warsaw Mommy, but I hope you’ll want to drop by. Here it is: http://risingwoman.wordpress.com/)
Good work Baby E! Everyday we are thinking of you xxx
Well done Evelyn. Well done mum.
I have been listening to the song ‘Evelyn’ by Cerys Matthews (no idea what the lyrics are, it’s mostly in Welsh) but it sounds dreamy and I send lots of good wishes Evelyn’s way…she is such a dear, sweet thing.
celebrate.
*hug*
So frustrating. I sure hope she can talk soon and tell you what is going on. And also I’d love to see her pretty little head pop up there if you can capture it on film. 🙂
YAY 🙂 Reading that just made my day!! Send her snuggles from me 😀
Hooray for 5 seconds! Baby steps…
I was going to suggest something similar to what Danielle said, but couldn’t get the words right.