Every journey
demands tenacity.
There is a narrative thread that connects the stories of our lives from the beginning to today.
Years before our non-speaking son was born, I wrote blog posts on communication and literacy within family life.
I did not begin as an expert in AAC writing for families. I began as a mother trying to understand the children in my home.
Any expertise grew out of love, necessity, and experience.
Large family living, traditions, and life milestones were the precursors to adoption, medication complexity, and advocacy.
Life is personal story.
The roles I have had over decades have given me a front row seat to many lives and their stories.
I try to tell my own journey: the observations I’ve made, the connections I see, and often the wrestle in my own soul.
Creating family and learning cultures where communication and literacy can flourish.
I am amazed how many people follow Nathaniel's and our family's story. Almost weekly at church someone we don't know will approach and want an update. Last night I realized I have this "other" category for Facebook messages. I am not sure why some messages go to my inbox and some to other. (If you know why, please tell me in the comment section below!) There were over twenty messages waiting in that other folder, some dated back to April in Nathaniel had hand surgery; all of them notes of encouragement, prayer, and kind words about sharing Nathaniel's story through this blog. They made me cry. You are all so genuine and so faithful to show support. Thank you for reading. Thank you for liking Facebook posts. For letting us know you are praying. It makes a difference.
John Denver's 1966 ballad comes to mind as I stand in Nathaniel's bedroom door watching his nap time sleep. I have not heard the song since my pubescent days. Once upon a lifetime ago, I was twelve with a mad crush on a college guy named Dave. He played guitar and say Denver into the Lake Erie wind at the end of a dock sticking out from the north shore of Ohio. I was not alone. All the girls gathered there beneath the stars on Friday nights thought Dave was singing just to them. We were naive. We were smitten. We were innocent of the harsh realities of leaving a loved one.
There were three places I wanted to be on Saturday night: my sister-in-law's surprise fortieth birthday party in Wisconsin, our church's annual fundraiser to support outreach to the marginalized in St. Louis City, and an Eagle Scout ceremony for a young man Rich has encouraged for years.
Instead I spent Saturday evening standing outside a chicken coop with Nathaniel.
I write so much about Nathaniel's communication needs, that I have not put into writing the other areas of development that we are addressing in therapy. There are many. Nathaniel continues to have a global developmental delay and some significant sensory processing needs. He has consistently received Occupational Therapy and Physical Therapy in addition to his twice weekly Speech Therapy. We had a long day of appointments at St. Louis Children's earlier this month and the collective decision was to start some new weekly therapy there to address some of the sensory needs. We go tomorrow for our first visit, which increases OT to twice a week now. We are putting PT on hold for a time to allow for the extra focus on OT.
We had our first snow today!
All morning I wanted to get Nathaniel outdoors, but it wasn't until after his nap that it happened. When adding the second layer it occurred to me that I didn't know if the trach goes in the coat or stays out? Do I zip the coat tight to his chin? In the end, I zipped and went out. Just keeping the hat and mittens and boots on was challenge enough. (Snow pants? Didn't I buy those last fall? Where did they go?)
When the sun shines in January, my home is flooded with light. Designed by a carpenter in the 1950's our house has wide overhangs that protect the rooms from direct sunlight in the summer, yet allow the warming rays in through out winter. The two feet of extra roof saves us in heating and cooling costs all year. There is cozy spot on the couch in the living room where the sun shines in almost hot in the early afternoon. It is a good place to spend Nathaniel's nap time. Reading. Writing. Editing photos. Drinking the last of the morning coffee. It is a good place.
Nathaniel came home from the hospital with round the clock private duty nursing. I would love to write a blog post on how smooth Nathaniel's second first night home went. But it didn't. We were up all night fixing problems the night nurse was creating. At two in the morning I asked her to sit in the living room. She had told me she was afraid to drive in the dark and I couldn't turn her out in the middle of the night.
Daily Life
View the entire daily life archive here.
Medical Complexity
I mentioned in my last post that for almost two years, we have used the majority of our private duty nursing hours for overnights. Life with private duty nursing has been quite the journey. Night nursing? A whole different ball game in itself. We have had twenty-nine nurses. I have caught seventeen different nurses sleeping; they were immediately removed from Nathaniel's case. A handful of nurses that worked well for us either moved out of town or faced some other personal life change that caused them to leave our job and home health. Another small handful of nurses were skilled, but just not the right fit for us. Non-nursing issues, like a nurse's clothing and belongings smelling like cigarette smoke, can become intolerable when the workplace is our private home.
For all our struggle with finding night nurses, we have had the opposite experience with day nurses. Nathaniel has had just a few since coming home.
Our night nurse arrived at ten last night and we were in bed by 10:25 pm. She left at eight this morning. We crawled out of bed at 7:36 am. Nine hours of sleep. Rich and I both needed it. Nine hours is a good night of sleep for parents of a two year old. It is a very good, rarely experienced night sleep for parents of a trached two year old. It means everything that possibly could have gone wrong went right instead. It means a nurse was on duty. It means the room air compressor, oxygen concentrator, pulse oximetry, heated humidity, and feeding pump - the machines Nathaniel requires at night - worked properly. It means Nathaniel settled back into sleep with a few pats on the bottom or by repositioning himself after waking. It means the night went as we had planned and prayed.
We plan to hibernate on Friday nights weekly.
Nathaniel was discharged from the Pediatric Intensive Care Unit and went straight to the cast room. We missed our previous scheduled 7:00 am appointment to get his cast removed and pins extracted, but the hand surgery team squeezed us in when we got there. I just wanted to be done. To come home knowing Nathaniel and I would not have to go back in a couple days. Not have to face the waiting room apprehension. Not have to open just scabbed over wounds of fear.
Dinner: snack packet of humus and pretzels and an ice tea. The cafeteria worker, the same one I have seen countless times in the last week, glanced my way and said, "$7.61."
"You're kidding me," I replied. "Seven dollars and sixty-one cents for that?" I wished I had walked to Panera Bread, spent two dollars more, and gotten the Mediterranean Chicken and Quinoa salad. It is amazing, by the way. Try it.
"Four dollars work?" His expression was flat, but kind as he punched in his employee id.
Nathaniel took two steps forward today. He spent most of the late afternoon and evening on room air. Hooray! We also were able to increase his daytime feeds to two ounces given over a two hour period. Hooray! Hooray!
The doctor and I are ready to push that gas pedal to the floor.
I woke early Tuesday morning to Nathaniel's suction machine turning on and off. I glanced at the clock. 3:15 am. Rich had woken me when he crawled into bed around 12:40 am. He needed sleep. It was my turn to help the nurse and check on Nathaniel. I have learned over the last two years that there are little indicators of seriousness in how the nurses manage Nathaniel's care. Suctioning by flashlight is evidence of minor intervention. Walking down the hall, I noticed a brighter-than-flashlight glow from the room. The lamp by Nathaniel's crib was on. It announced an increased need for triage by his nurse and myself. Nathaniel had a fever. A very real aspect of our life is that Nathaniel can go from running and playing like normal to Pediatric Intensive Care Unit in a few hours.
My husband is an Emergency Preparedness Merit Badge Counselor for Boy Scouts of America. I do not remember now why he took signed up for the responsibility, but for years he has counseled young men through the badge. Many of those years our sons' troop dedicated an entire weekend camp out to helping the boys earn the badge, including an emergency with injuries. While sorting campfire smoke laden clothes in the laundry room on Sunday afternoon, I would listen to Rich share about the "accident," find out which boy in the troop suffered severe injuries, and ask questions about how the troop solved the crises. I learned a new application of a word through that process - mitigate. At the end of every drill the troop would mitigate the accident; they would sit around and discuss what could be done next time to lessen the severity of a similar emergency.
Monday morning I told crews at the ambulance house that, "someday Nathaniel will have a very two-year-old moment, probably when he is mad at me or wants to get a reaction, and pull his trach tube out." At 6: 31 Monday night, he proved me right.
Rich, Peter, Nathaniel, and I had gone for a walk and were coming up our sidewalk. Peter was ahead of the stroller; Rich and I behind it. Peter looked at Nathaniel who was in his stroller playing with his Ligntening McQueen matchbox car, then turned to unlock the door. Two hands were on the stroller tray playing with a car. Not angry. Not having a temper tantrum. Nathaniel was waiting happily with a smile on his face. Peter turned the key, pushed the door open, turned back towards Nathaniel and yelled, "He pulled his trach out!"
View the entire medical complexity archive here.
St. Louis. One full week. Full of Pottery and Jumbo Marshmallows. Best time ever! Never before have I watched Sound Of Music sitting on a bed with a huge soda in hand. I don't think I will ever forget my time in St. Louis.
Five years ago this afternoon, Rich stood in a sanctuary and offered a lunch blessing. Our guests were waiting to congratulate Bailee and her new husband, Jeremy, and to continue to celebrate with us. Everything about our daughter's wedding leading up to that point had been magical.
Nathaniel and I achieved a milestone recently. I had been out grocery shopping and he was home with our private duty day nurse. As I walked through the front door I called my usual to him, “Nathaniel! Mommy is home!” He ran to me. Arms out stretched. Smiling broad. A first.
Tomorrow is Nathaniel's second birthday. I have looked forward to the milestone since our adoption interview. Everyone at the meeting was hopeful that Nathaniel's trachea abnormality would be surgically corrected by his second birthday. Nathaniel's trachea abnormality dominated the conversation that day. As last year unfolded it became evident that trachea surgery is still a long way off. The hope of "by the second birthday" is now hidden away in our prayers for an unknown day.
This weekend marks five years that Rich's father has lived with us. We considered waiting to adopt until our season of assisting Grandpa was over. Caring for an aging parent in your home is a unique challenge that only those in the trenches can fully understand. Accepting additional responsibility through adoption seemed... let's be honest... risky? Or extreme? Or radical? At the very least - hard. One of my struggles while taking the foster and adoption classes was the long mental list of the sacrifices I've already made for the sake of elderly care. "Surely God, you don't expect me to take in a child when I'm already giving so much?"
A mom steps timidly forward.
A protective older brother watches cautiously.
A baby looks for reassurance.
A mom stands courageously to the side.
And the photographer positions the moment I met my son in a larger story:
his foster family loved him well.
It seems we've always had to cope with our children being away from home on Christmas.
Rich spotted it first. An empty bird's nest nestled in the branches. We paused. Admired. Took a photo. Considered the tree. But moved on, leaving the nest for whoever claimed the tree.
I went to court for the first time in my life yesterday. And it about did me in.
We were lying side by side on the floor in the empty bedroom when Rich whispered, “I want to submit our home study for the baby.”
She couldn't concentrate on the work and smile for the camera at the same time. Sunday night pretzels. An Uncle Rich tradition for 20 years and tonight Ellie was assigned the responsibility of helping to make dinner for everyone attending the family reunion.
In route to Arkansas last weekend to visit our daughter and her husband, one particular turn along highway 67 south caught my attention. I saw the first sign at least a half mile from the curve: large yellow rectangles on both sides of the road warning a sharp left bend. CAUTION. Blinking lights. Danger Ahead.
We are starting our fifth year caring for my husband’s father in our home. It has been a very rewarding experience that has enriched our lives tremendously. The last four years haven’t been conflict free though, and I’ve learned a lot through the process of sharing my home with an in-law. Perhaps these three lessons will encourage other families in a similar living arrangement.
The Facebook message from my friend, Beth, caught me off guard.
I had thirty minutes to waste at Barnes and Noble last weekend and walked out with John Eldredge's Fathered by God: Learning What Your Dad Could Never Teach You. I didn't intend to by a book on manhood, or even intend to buy a book at all. But when I thumbed through Elderidge's book, a chapter title caught my attention: Cowboy.
I have a box of Christmas things marked "OPEN BEFORE THANKSGIVING." It contains the items we need to celebrate Advent: our wreath and candles, booklets of Advent readings from previous years, our Christmas music CD's, homemade nativity scenes, and three of our favorite family read-alouds for the Advent season
We had the opportunity this fall to visit the Menominee Indian Reservation in Wisconsin with a group of volunteers. We spent a Saturday cutting firewood for the tribe's senior citizens. As our group processed what it meant to be invited onto the reservation, we were challenged to think of ourselves as bridge builders from one culture group to another, and then further challenged to think of tangible things we could do to build bridges.
f you're like this homeschool mom, you're wondering just how summer slipped by so quickly. I really need to crack down the next couple weeks and to get ready for the new year.
First thing to do every school year is compile a list of subjects and texts for each student. I have used the Course of Study form on Donna Young's website for years. (Thanks Donna for the amazing resources you offer free!) Compiling this document gives me a chance to do a last minute check on everyone's books and supplies, and also makes a great first page for the Missouri required portfolio of student work.
Family
View the entire family archive here.
After Nathaniel's Laryngotracheal Separation in February, our Cincinnati ENT told us that Nathaniel's new breathing stoma was big enough that we could stand across the room, throw the trach tube, and get it in. We all laughed. That is an impossibility of course, but we now know that with Nathaniel in the back seat, a six foot one inch lanky Daddy can get the tube in from the front seat.
A few people have asked me why Nathaniel's airway is safer - how did surgery provide that? Before we got home, Rich and I had started discussing what was different from previous accidents. There were multiple things working together.
Today was the sixteenth time in less than three years that I handed Nathaniel to an anesthesiologist for a surgery or medical procedure. That does not count illnesses and lab work. Despite the outward appearance of resiliency and well-being, the chronic need for medical intervention is taking a toll on Nathaniel's body. We are in Ohio for two days of appointments at Cincinnati Children's. Nathaniel was seen by four surgeons in the operating room this afternoon. As a side note, I really like it when doctors play well together and coordinate care; if handled differently, what was done today could have required four separate visits and four more handing overs to be sedated. Thank you Cincinnati Children's!
I came home from the hospital last night and noticed the two trachesotomy tubes sitting on my windowsill. Both, one from two weeks ago and one from Friday night, are waiting to be cleaned and sterilized. Seeing them reminded me of the first time my younger brother came to visit us after Nathaniel came home. We keep two trachs, one the same size and one smaller sealed in bags after sterilization, near Nathaniel's bed. At the time of Clint's visit, one of the tubes was stored in a bio-hazard bag; it had probably last been sterilized at the hospital. Bio-hazard baggies are what the nurses use even though the item inside is going home intended to be reused. When talking about Nathaniel that night with my brother, I made a dismissive comment about the intensity of his care. "You have a bio-hazard bag hanging in your son's bedroom," Clint said with some strong emotion. "For crying out loud, this is beyond medically complex. This is life and death."
I was driving home from grocery store the other night and started to sob. A chest heaving, can not catch your breath sort of sob. Nothing had happened that day or during the shopping trip that warranted tears. As I was leaving the store, Rich and I had exchanged texts. He and Peter were finishing up changing Nathaniel's tracheostomy ties and he was putting Nathaniel to bed. "Will you be home to say goodnight?" The last text from Rich that I read before the convulsive gasps gripped my torso like fingers grip a steering wheel when driving in a torrential rain.
Three times it happened during Nathaniel's recent hospitalization.
"He's in here with Grandma," said the Emergency Room attending to the resident as they discussed Nathaniel's case outside the partially opened thick sliding glass door.
"Are you hanging out with Grandma, today?" the respiratory therapist asked Nathaniel when she came into his room to administer a treatment.
"Grandma, will you be staying the night instead of Mom?" asked a night nurse new to Nathaniel's case just after shift change.
"I'm Mom," I replied.
Once I added a smack, "A twenty-something Mom or Dad couldn't handle this kid."
Nathaniel and I achieved a milestone recently. I had been out grocery shopping and he was home with our private duty day nurse. As I walked through the front door I called my usual to him, “Nathaniel! Mommy is home!” He ran to me. Arms out stretched. Smiling broad. A first.
A young facebook friend asked an honest question about Nathaniel last week, “Could he possibly die, Kim?”
I had posted information about a doctor’s appointment and diagnosis, a newly found hole between the Nathaniel’s upper heart chambers. The question was genuine and filled with concern. I crafted an answer that tried to delicately balance between the truth of mortality rates for children with a tracheotomy and trusting in God.
The question has stayed on my mind. It has taken me back twenty-five years to a hot June night in 1990. I shifted between nestling against Rich’s chest with his arm wrapped around me and rolling onto my right side away from him. He would have slept soundly through my tossing until I deliberately woke him up.
“Will she die?” I asked.
Faith
View the entire faith archive here.
In 2009 we added a six hundred square foot addition on our home. Rich's mother had just passed away and while neither of us had strong opinions on having our parents live with us, neither of us wanted his father grieving alone. We offered space and assisted living type support in our home. Grandpa accepted.
Working on Grandpa's new room was all our family did that summer. A son moved back from Florida to participate in the construction. A future son-in-law proved his loyalty with long days of concrete work. Our then ten-, fourteen-, fifteen-, and sixteen-year-old sons grew up quickly. We swung sledgehammers, lifted walls, reached for roof trusses, set windows, ran electrical lines and hung drywall. It was a labor of love and changed us. As a family and individuals. The construction project set pieces of Grandpa's heart right again as he was drawn out of his grief and into meaningful work and something bigger than than himself - the power of a family working together.