Prader willi, Uncategorized

Which one is not like the others?

Your eyes are still glued shut but your ears are fully awake. It could be a mile away but a new mom has impeccable hearing for her newborn babies cry. You try to ignore the small sleepy coos. Once the babe lets out a deep throat cry bare feet hit the cold floor at 2am to soothe another helpless baby through the night.

I am all too familiar with crying needy babes at midnight. Nursing every 2 hours was what I expected when we added our third baby. I was ready for the house to be full of noise. I was ready to sit up and comfort her for hours just because she wanted to be held. I was ready for the car rides to school to be full of tears and ear piercing screams. Instead there was silence, heart pounding silence, watching for breath silence.

Elsa is not like others. Friends came to visit the first few weeks home and would ask how we were sleeping. How was she feeding? Does she keep you awake? All of my answers were not the common response from a new mom. She slept too well. She never cried. She was force fed. She was not hungry. She was not like the others.

Two physicians asked me questions that left me with a disgusted and probably rude face. I’m not sorry for my response at such on odd question after a diagnosis of prader-willi syndrome.

“Do you notice that she is different from your older boys?” The MD’s were probably asking out of respect and trying to lessen the blow of her condition with such a question. It bothered me. I’m not one to beat around the bush.

As I was trying to keep my two year old out of the office cabinet of gowns and tongue depressors I let out a scoff. “She is different in every way, in every movement, and in every life giving breath. How could she not be different?”

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Four year check up playing with equipment
We all knew what she had in those doctor offices. We all knew she was different. And I love every different part of her. With her small preemie size toes and tiny palms that can’t grip more than a woman’s pinky finger, the obvious to the unseen differences, I fully embrace with bittersweet love.

~*~

2am hit me with a cold breath of night air. That night I woke David as we listened to Elsa let out a small high pitched sound. She was trying to cry. Instead of dreading the surprise awakening we smiled at each other glad to hear she found her voice. We were thrilled she could muster enough energy and strength to express herself, even at 2am.

Most mothers in my generation feed on demand. When the baby is upset, milk is not far from its mouth. If Elsa was fed on demand she would not have survived her first two days of life. We feed on a strict schedule. No, she never breastfed. I can hear the shock and awe of some. She is bottle fed, and yes it’s all formula, a high calorie formula. There is no cry for food. There is no rooting with her mouth, just a clock that tells us her blood glucose needs food and her brain needs the calories to develop.

Elsa still sleeps in her crib by the foot of our bed. My boys were out of my room at two weeks of life. They made so much noise while sleeping I was up all night. Even my ear plugs did little to drowned out the sounds of them crying. The whole house knew the boys were awake. Elsa won’t make a sound, so much I near her crib to see her chest rise and fall with breath. She is almost 6 months old and still sleeps close by.

If left to her own devices, Elsa would lay on her back all day and all night. She would barely move her small frame. The weak muscles barely able to turn her head would not be curious enough to find a familiar face in the room. I work day and night, bath time, feedings, car rides, and sleeping to keep her stimulated and positioned appropriately to develop strength. Normal babies move with fascination of the world without excessive intervention. Elsa will look with desire in her eyes to move but jailed in a helpless frame of low muscle tone. Her emotions are freely expressed in baby blues staring you in the face, a shy smile struggling to emerge. Without the help of a gentle hand on her back she would not turn to see her brothers. Constant assistance is needed for Elsa to meet her milestones.

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We travel monthly for doctor appointments. Elsa could qualify for MVP status on our airline at 5 months of age. I carry her close to my chest through security, on the ramp to the airplane, and hold her tight as we fly into the air. Her eyes stay shut through loud announcements and the rough Alaskan landings. My friendly seatmates, without a doubt, will comment, “What a good baby you have!”. I politely smile and say yes, she is a great traveler. Inside, I chuckle to myself. Low tone babies will sleep peacefully if held. They melt into your arms with soft support allowing them to relax. She is so different than my boys. Crying on the ascent and descent of flights was typical. Lots of entertaining and snacks were necessary to keep them in the small airplane seats. Elsa really is a great flying companion.

Elsa is different. She is the odd man out. I love it this way. She reminds me we are all made with our creator in mind. A bigger than life, more diverse than our small brains can muster creator that formed us to resemble him. How big and how great is our God? Have we searched him and found him? I am reminded daily he is too big to comprehend in this life. We have all eternity to find him out, to know him more, and yet we will never get to the end of his greatness. Elsa is made in his image. She shows me and everyone else she meets a different side of our Lord. And she shows me God is working in our small, seemingly unimportant lives every minute and second of our days. With each rise and fall of her chest, she breaths the life God has given her. She is different and she is blessed. She is beautiful. And she is the Lords workmanship.

Genesis 1:26 Then God said, oLet us make man8 in our image, pafter our likeness. 27  So God created man in his own image, in the image of God he created him; rmale and female he created them. 28 And God blessed them.

 

 

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