Monday, February 25, 2013


We have been racking up on sleepless nights. The diagnosis is a simple runny nose. The symptoms are continuous coughing, gagging on post nasal drip, and the vomiting. We are burning through sheets, pjs, and carpet cleaner, but this is nothing new. This is every runny nose and something that is par for course around here.

I am a light sleeper, I hear everything. A blessing and a curse. I am usually awaken by coughing. I lay there listening, try to gage how bad it is and where it's going. Then the alarm sounds. Wrapped around Maaike's big toe is a laser sensor, glowing red, sending second by second oxygen levels and heart rates. If the numbers are below satisfactory the alarm starts to sound. Still I lay in bed. I'm waiting to see if the alarm stops, maybe caused by a long breath or a kick of the foot. I wait for two sounds of the alarm, if it goes to a third I'm up at her bed side. But last night there was no cough or alarm that woke me at this moment. This time she was calling for me, yelling for mommy.

When I got to her crib she was visibly unset. I started to brush back her crazy locks with my hand and asked her what was the matter.

"Bad dream. I had a bad dream."
"Oh no." I said, "What happened?"
"My friends were making fun of me."
My heart sank.

I continued to smooth back her hair until she was back to sleep. I climbed back into my bed too, but I couldn't fall back to sleep for she had just spoken of one of my worst nightmares.

Miss Maaike is only two years old, three in May, so I can only imagine she was repeating something she heard one of her siblings say or that she was speaking of being teased in the most general sort of way, but I can't imagine that this is the last time I will hear those words and it will mean the most specific and hurtful sort of way.

The momma bear in me wants to protect her from every stare or rude comment. I want to get vigilantly on any kids on the play ground who point or tease. But I know, "sigh", I know I can't.

I cannot be the sword of revenge. I must be the voice of confidence. I cannot be the wrath of undeserved pains. I must be the love of healing. I cannot be there for every unkind thing done. But I will strive to prepare her to know of her beauty, to be radiant, to be strong.

Tuesday, February 5, 2013

The Devil You Know and Pre-preparing for decannulation

One day at the library we happened to chance upon this book.

It is a charming tale, with wonderful illustrations, about a family with a little devil.  At first the family is overwhelmed at the disruptions the naughty little devil creates in their lives and can think of nothing worst than life with him.  Then one day there is a knock at the door.  A tiny and smartly dressed devil is there with the offer of getting rid of their little devil and in turn she will move in and kept house for them.  The family resists at first, but then their little devil does something to send them over the edge.  Their little naughty devil is banished and the new one moves in taking over the entire house and causing absolute pandemonium.  The book is written after and holds true to the old idiom, "Better the devil you know than the devil you don't."

When Maaike first got her trach, at 1 month old, it was the devil.  It changed everything about our lives, where we lived, what we could do, where we could go, our dreams and adventures were turned on their heads, and for awhile I wasn't sure how we would ever recover.  But, with time and familiarity her trach became "the devil we knew."  It still very much changes our lives, but I'm not afraid of it anymore and in deed I am thankful that a little devilish piece of plastic preserved her life and allowed Maaike to bring us the immeasurable joy she has.

I have dreamed about the day when Maaike would be decannulated and we could throw her traches in the trash.  I have longed for the days when we don't have to divide our family activities, but we can all go together, cold and flu season or not.  It seems too good to be true that those days may be coming upon us.  And to be honest, I am terrified.  Could we be trading the devil we know for something much worse?

I fear sudden swellings and flareups with no sure airway.  I fear surgery and recoveries without easy access.  I fear it is too early.  I fear emergency phone calls and CPR.  I fear the worst.  I fear my fears.  I fear the unknown.

on the way home from her last appointment with a baggy full of fashion coordinating trach caps

Maaike calls her trach caps "bottle caps".   She is adorable.  And, she is doing well with them.  The process is pretty quick.  Start with 2 minutes the first day, then 4 the next, and continue to double each day.  In the span of a couple of weeks you come to having the trach capped for eight hours a day.  We are almost there. The next step is a capped sleep study at the hospital.  This will be very telling to whether she is really ready or not.  If the answer is "Yes" then they basically pull out the trach and stick a band aid over it.  In 15 minutes it will start to heal itself.  Unlike an earring hole, a trach hole or stoma, doesn't patch itself into permanency, it is an open wound held open only by the trach and once the trach is removed it will start to heal itself. Amazing really.

So here we are, familiar and resolved in a trached life that looks to be turned up on its head again.  I suppose we will adapt as we did before and always have.  I suppose I most fear a false sense of hope, but whether I am ready or not I have a marvelously spunky two year old who has grown and overcome against so many odds and if she is ready then I will be along for the ride.