Thursday, July 23, 2009
Wednesday, July 8, 2009
I have came to the conclusion that sometimes there are no words, only tears.
Our very first nephew was born this week, hours later he was called home and healed in heaven. I am not sure if Brian's brother and wife would be comfortable with us sharing this news with you, but I know there are people who read this blog who have a special place in their hearts for little angles who get their wings all too soon, and I know how prayer (and connection) can heal the deepest of hurts.
Please pray for Brian's family, who have endured more hardships in the past few years than anyone should ever have to face.
Thursday, July 2, 2009
This past weekend I said goodbye to a colleague of mine who is moving out of the country. Throughout the past four years working with my friend her mantra was, "keep it simple."
When I stressed about Kindergarten graduation ceremonies or not-so-pleasant interactions with administration she would scold me, "Jennifer! Keep it simple!"
My tendency to over-complicate things is genetic. My mom loves telling a story of a time where she overlooked the simple.
As a single parent with three children, she had reason to perceive things as complicated because they were. In one such an instance she drove around for a year + with a garbage bag covering the broken sunroof in her car.
"We don't have the money to fix it" she'd say empathetically as she carted us off to gymnastics, soccer practice, etc., as we tried not to be bothered by the sleet/snow that impaled us as she frantically drove about the city of Boulder.
I am not sure what lead to this revelation, but one day she picked up the phone and called the manufacturer of the sunroof. Turns out it was under warranty and a new sun-roof was at our door in no time.
Still, we continued to drive around braving the elements "I can't put that thing in!!!" She complained as months of manic driving went by before she ever attempted to put it in. Turns out when she finally did make an attempt to put the new sunroof in, it popped in with ease. "The story of my life" my mom remarked "making everything more difficult than it needs to be."
Thus was the case with Faith's sleeping arrangement. For the past year we've taken turns sleeping next to Faith's "bed" which consists of two mattresses on the floor. Since she was "crib-a-phobic" it was the only other alternative we saw. When people suggested we get her a toddler bed I envisioned our child dangling from the sides of the bed after an unfortunate ventilator bungee jumping attempt.
A few weeks ago (and many back aches later) we decided that perhaps it was time to seek a new alternative. A few clicks on craigslist and Faith was sleeping in a white wooden Pottery Barn bed (which retails for $250) for $60. Not bad. Even better, we were able to put the mattress we sleep on on a box spring- the result? Pure heaven. I had no idea how uncomfortable the mattress on the floor was compared to it being supported by a box spring. While the great Craigslist steal might not have been there, the option to raise the beds up a few feet and prevent many nights of discomfort were. Once again, over complication as it's best.
In a more significant turn of events, our life with Faith just got a little more complicated in a very uncomplicated way. You might recall a few months ago Faith had a bronch and it was determined that Faith's airway is extremely damaged and the only way she will ever be able to live trach-free is with reconstructive surgery.
At the time the only obstacle in our way was the ventilator. "Get her off the vent, and we'll talk about our next step." our Ear Nose and Throat doctor from Children's told us.
Telling this to parents who have lived a child with a hole in their neck and you can bet your bottom dollar that vent is flying out the window before you can say decannulation (yeah, the binky thing didn't last too long) But all the while we were terribly afraid that Faith would get really sick again and need ventilation. Ventilation without a trach = bad news for a reconstructed airway.
So we were prepared to duke it out with the ENT last week. We were going to put our foot down. No way Jose, Faith needs her trach...at least for one more year. Before we could open our mouths to argue, the doc said it for us,"nobody in their right mind would ever do this surgery on a child as fragile as Faith."
And then we heard what we have from day one, "she needs more time." No, not time to grow (the damage is done, growth cannot help her airway) but time without being sick. Three visits to the PICU this past winter put her out of the running. "Let's see how her winter goes this year, and we'll reevaluate next Summer."
Shocked, and relieved that we didn't have to argue our point (once again complicating things that weren't even complicated) our eyes pleaded for a little elaboration (something ENT's are not big on) and he added, "and if she has another bad winter, it'll be a couple more years until we talk about decannulation." He even went as far to recommend us to another ENT who's expertise is in patients with more "complicated (his words, not mine) airways."
This didn't affect us the way it should have. We knew it was coming, and we know it's what Faith needs. In the grand scheme of things a few more years with a trach is a drop in the bucket. We were thrilled we didn't have to fight- heck, we didn't even have to open our mouths.
Driving away I couldn't help but think of how the trach does complicate things, ironically things that should not be complicated. For a few minutes last March, when I heard the word "decannulation" I couldn't help but think of how uncomplicated life would be without a trach; to be able to bathe my child without worrying about dumping water into her lungs- or even better- to take her to the swimming pool, or to get up and go without worrying about emergency trach supplies and suction machines, letting her "tough it out" when she has a cold and avoiding hours upon hours of suctioning, having the option of choosing childcare, and to be able to hear her voice- all things we will never be able to experience until that little white tube comes out of her neck.
I am self-assured enough to know that having a child with a trach is not my identity but it has become a complication of an already overcomplicated life. I may not always be able to "keep it simple" and I, like my mother, may not be able to always be able to see the solution right in front of me, but with two years of experience under our belts and another few to go, you can be sure that with each day that goes by we're getting a little further off the floor. :)
Jen & CO.