The tapestry of the life of a medically complex family

Monotony

I live an invariable life.

While others lament the “heat waves” that ebb & flow through New England summer, I hunt my lamb’s wool slippers every mid-day to tame the chill set by the AC. Heat intolerance is severe with the wee ones who seem to generate their own as a by-product of their metabolic condition. 65 is their ideal. We have all grown so used to it that I am able to detect the rising humidity, the point at which the temperature rises to 70.

The walls of the playroom and kitchen house our day. There are those fleeting moments when I open a door to put out the dog or receive an oxygen delivery. I am shocked by the heat that blasts through the opening. We read, play, climb, swing & slide indoors until the relief of fall arrives. Our only escapes: clinic visits, surgeries, medical tests- each with a cost: fatigue, regression, declining respiratory status.

Monotony. Invariability.

Safety. “Health”.

I was chatting with another Mom to a child who will not outlive her. It is a difficult awareness that we live each day. A difficulty that is not without its own gifts for we who live it.

I think one thing about our kids:
It won’t always comfort us, but their strength through all this adversity, their joy, their sweetness, their ability to draw people into our lives who understand- who love us & them- that legacy will stay with us when we no longer have them with us physically. YOU, other parents of children LIKE mine & different from mine… it’s a gift my children have provided that will outlive them.

Bittersweet gift, but a gift for which I will forever be thankful.

Another FIRST

What a fun family first!

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A New Way of Egress

Working to address the need for my kids to get themselves in & out of their high cribs themselves as they have gained so much weight some nurses cannot lift them, THIS is what I came up with…

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Eostre 2013

A day of fun & family.

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Staring

I cannot stop staring at her hair. It is thick and blonde and perfectly coifed. It is the kind of hair that begins partway forward on the forehead. It is PERFECT today. And I cannot stop staring.

Her mouth is moving – telling me she has breast cancer. She is scheduled for a second opinion & surgery next week. She needs time off from helping my child to address this devastating health issue. I nod. I gulp. I think of her 9 & 11 year olds, her husband.

And I can’t help staring at her hair.