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.


3 responses to “harsh discoveries”

  1. craniomumdana2012 blackhall Avatar

    Oh my sweet friend… Can I share your personal sadness… Take it away somewhat.. Perhaps we can share our never ending experiences… My love is with you.. Because you write also my experiences… Big breath Hunni… Big breath… Xxx


  2. Nanci Avatar

    I read this and tears stream down my face. I know firsthand the frustration – I am Liam’s Gma Nanci. Your beautiful little Poppy is so deserving ~ the same thing happened to Liam. We had to beg , plead , network to find that “one” doctor who said yes. I know that if Aunt Susan has any answers or suggestions or just kind living encouraging words she will let you know. She is my rock. I will also try to help. Much love to you and your beautiful family.
    Liam’s Gma Nanci


  3. Brooklyn Myers Avatar
    Brooklyn Myers

    There is no pamphlet that is left with this beautiful journey. It is not easy to see your child suffering. We are parents and want to take the pain away. But the best is keep on doing what you are doing. Poppy knows how hard you are trying. She knows that her mommy didn’t want any of these trials and tribulations to occur. Do the best you can do and that is all you can do. Keep your faith in the Lord for he will shed light in the times of darkness and comfort you. Will all our love and compassion for your unconditional love for your children and faith we know you have. Lots of love.


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