In the midst of educating myself about the Craniofacial Clinic in Dallas, I happened upon a page with links to some of the  common conditions/abnormalities associated with Apert syndrome.

…and it was devastating. Fused shoulders.

It all made sense in that moment. Those cute little dimples on the back of each shoulder. Her (seeming) unwillingness to cooperate with getting dressed/undressed. Her aversion to tummy time/crawling.

As she slept I very gently lifted both of her arms up toward her head. They stop at neck level. All this time thinking her resistance nothing short of insubordination. Her shoulders are fused. I could’ve broken her bones trying to finagle her little limbs into a tight-fitted shirt.

It seems the guilt is unending.

Also stumbled upon the cause of most developmental delays associated with her syndrome. Sleep apnea. The brain is basically starved  of oxygen during nighttime hours when breathing becomes an issue because of apnea/breathing difficulties preventing proper sleep. Suddenly her constant waking and screaming has become less frustrating and more frightening.

I was not handed an instruction manual, an in-case-of-emergency pamphlet, or a list of every possible disheartening piece of this multifactorial syndrome. And as glad as I am that I was not bombarded with terrifying literature and startling imagery – I do feel, daily, struck stupid with the reality of this journey.

What else don’t I know?

And now, Poppy is sick for the second time this month. She cannot nurse and breathe at the same time, which is so terribly sad to experience. She simply does not understand why it is suddenly such a laborious task to be nourished. Her need to suck for comfort cannot be satiated with a bottle of water. She wants routine, safety, she wants easy and familiar. 

So does mama, baby girl.