Every crumb on my floor has the potential of ending up in Nathaniel's lungs.
I type that sentence and do not know what else to say. There should be something funny inserted here. But facing the gravity of life with this child, I struggle to keep it light. Twice today he has picked something up off the floor, put it in his mouth, and then had a coughing spell that required immediate suctioning.
August. Seems it was here one day and gone the next. I will try to hit the highlights here...
First week of August found Nathaniel in same day surgery again for another diagnostic bronchoscopy. His trachea development is stagnant. Still just a pin hole opening through the stenosis and webbing. The doctors were not able to find a cause for aspirating. His trachea did grow in length and we were able to size up from a 3.5 neo tracheotomy tube to a 3.5 pediatric tracheotomy tube. A difference of six millimeters in length.
Submitted by kim on Wed, 08/13/2014 - 15:36 in Lessons for Mom
I have spent a lot of time talking about the death of Mike Brown with my sons this week. It is not out of the ordinary for our family to talk about the news and especially how current events intersect the lives of young people. One particularly hasty conversation took place standing up in my bedroom after they told me they wanted to drive thirty minutes up the highway and join the protests. "Unarmed teens should not be shot dead in the street, Mom. I've been stopped lots of times by the police. I've never been shot at. This isn't right."
I completely botched a conversation with one of Nathaniel's therapists the other day. She arrived for our therapy session and saw his medical stroller sitting in the living room. She made a comment something like, "Does he use that stroller? All he really needs is a standard stroller." I heard: "Why are you putting him in that - go buy a regular stroller!"
Submitted by kim on Thu, 07/10/2014 - 18:48 in Lessons for Mom
One of the teen boys walked through the living room at eleven on his way to bed and stopped. "Where's your phone?" he asked, "You need to blog about this. You need a photo."
He grabbed my smart phone before I could protest. I cringed. Not a photo now, I thought. No make up. An old sweater. The shorts. (Dear Lord, no pictures in shorts!) The callous on my right ankle from sitting cross-legged on the floor for hours a day playing with a toddler. This mess around me.
A year ago I did not know this late night mess in my living room was part of being Nathaniel's mom.
We woke up July 4th morning with no plans. All week we have been asking each other, "What are we going to do for the Fourth?" No one had an answer. Traditionally, our family enjoys going to a local municipality park that hosts a band and then fireworks. We sit close to both. We knew those plans would not work.
Although he has not received a formal diagnoses, Nathaniel appears to have some sensory processing difficulties. It has taken him months to get used to congregational singing at church and if we change were we sit, the new acoustics can send him into a panic. There is no way he could handle our annual front row Fourth outing. But a large red, white and blue clad crowd does offer the opportunity for exposure and hopefully desensitizing. We decided to do our crowd event in the morning by attending a parade.
This is happening.
We are packing boxes. Loading trucks. Storing belongings. Planning to move.
If you search for a 2,200 square foot, four bedroom home in the St Louis area on real estate listings, you might find my home. My kitchen counter and my closets and that spot on the couch near the fireplace that I love to sit next to my husband. We are selling our home. It feels surprising even to me as I type the sentence.
Sometimes I am jealous of Rich's work. As a carpenter, he can stand back at the end of the day and physically see what he created. In fact, we can drive around St. Louis and see evidence of his thirty-five year career. Subdivisions at dusk when the lights are on inside, but the shades not yet drawn reveal staircases and bookshelves and kitchens that he installed. Once we met a couple that had recently purchased a house he built twenty years ago. Most recently, his labors are seen in commercial buildings. A Siteman Cancer Center. The Lutheran Senior Services Center. The trim, wood columns, and bar in the clubroom at the Peabody Opera House pictured above.
My work as a mother is not so clearly seen.
We hardly had time to process that our family is no longer caring for Grandpa when Rich was sent out of town for work. We do not do husband-working-out-of-town well. As a family or as couple. His job as a carpenter is not one that we would expect him to work away from home. I was thinking about the by-line for this blog… “preserving the fruit of life through tough times.” Rich working out of town is a tough time for us.