Extra

My boy with an extra chromosome is:

Extra snuggly.

Best snuggler. I not only get to enjoy this sweet stage of snuggles for longer than my other kids, and he is the best of the best. The extra flexibility and low muscle tone makes him melt, (and I melt a little too!). His head rests on my shoulder, and his body relaxes, and I feel his cheek smiling against mine as he says “dadada.” (yeah, we are still working on that).

 

Extra smiley.

Look at him! You can’t help but smile, and he reciprocates. He shows off all his jack o lantern teeth, and squirm with delight.

 

Extra beautiful.

Every child is gorgeous. Truly. I have thought this about each of my children, and random stranger children everywhere. This baby is extra beautiful.  I could stare into those round eyes all day.  Nobody has eyes like Noah. They are all fireworks and sunflowers.  “Brushfield Spots.” Abnormality, sure, but breathtaking.

 

Extra delightful.

If he could talk, these would be his favorite words- “pick me up, bounce me, swing me, hug me, tickle me!”  They would be said with laughter.  He doesn’t squirm away while being held, he just wants me.  I pick him up and he squeezes me around the neck as hard as he can, then yanks my glasses off my face and chucks them across the room. (Stop laughing.) “No, no!”

 

Extra leisurely.

Every milestone is awaited with bated breath, and sometimes I have to just wait and breathe as I wait. When he does finally say “no!” or sits up on his own, or gets a cheerio in his mouth on his own, or army crawls dangerously to the edge of the steps, sometimes there are happy tears

 

Extra patient.

His brothers love him.  Sometimes it gets to be too rough.  Siah knocks him down occasionally, and there are tears and angry cries.

 

Extra good.

He never asks to be fed.  Never ever.  He might get tired and rest his head on the floor, but he only really fusses when something is really really wrong.  Some people with Trisomy 21 sometimes don’t have as sensitive nerves.  So if he is cold or hungry or his diaper is scratching him, it’s no bother.  He smiles right through.  This is partially why he has low muscle tone, and we are constantly “revving him up” to help him activate.   This is also responsible for the teeth grinding.

 

Extra tough.

For the hundred blood draws he’s had in his little life, he is easily comforted.  Sometimes he doesn’t cry at all.  He has endured more medical tests and procedures than our entire family combined.  Many of them are painful, but he bounces back quickly, and has only just started being leery of people wearing blue gloves.

 

Extra playful.

His brothers love him. Josiah lays his head in Noah’s lap as Noah whacks his face.  They both giggle with delight.  There was a time when Noah did not interact at all.  He sat.  However Josiah with little direction from us or feedback from Noah talked to him, made silly faces at him, brought him toys, hand over hand helped him touch and play with toys.  Noah suddenly “turned on” and now PLAYS with his “iah!”

He requires extra from mom too.  I have to be extra vigilant as I watch him to ensure he is breathing well as he sleeps.  All night long.  I have to be extra attentive that he isn’t aspirating his drink at lunch.  Extra protective when the boys pick him up or play with him to ensure he doesn’t bend the wrong way.  Extra watchful for symptoms that would indicate leukemia or worsening breathing or seizures or new surprise problems we have yet to uncover…   Extra scheduling for his next therapy or doctors appointments.  Extra organized so I have my concerns written down, research articles filed and ready to discuss with doctors, and collecting and filing of insurance papers.  Extra research as I read about his biochemical and nutritional needs, constipation cures, and ways to help his development.  Extra cooking as I prepare different meals to accommodate food allergies and sensitivities in the family.  Extra coffee when I have spent the night fixing oxygen tubing, and sucking snot from his extra narrow nasal passages instead of sleeping.  Extra patience and energy for the domestication and education of 4 boys.

 

Our family has to be extra patient when mom has to go away with Noah for a therapy appointment.  Extra supportive when Grandma or Daddy to give up their day so mom can run with Noah, or take care of him so I can adventure with the big boys.  Boys have learned to be extra gentle.  They have learned to share mom and with each other.

 

His extra chromosome has brought extra love.