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.
"Kim came to our church to present a training on how to effectively minister to families whose kids are impacted by communication challenges. She gave us so much helpful information on how to be a truly inclusive ministry, no matter the abilities or challenges faced by the kids we are serving. Not only was the information she presented clear, helpful and actionable, but she is also such a gifted and engaging communicator. All the volunteers and staff who attended the training left equipped, encouraged and inspired!"
Marianne Dean
former Children's Ministry Director
New City Fellowship Church
December has been a whirlwind of fun for our family. Rich spent hours in the garage making three maple saddle stands as a Christmas present for Andrew; Nathaniel and I spent those same hours in the kitchen making yummy food for everyone. We were able to see all our children over the Christmas holiday and made some great memories. I love this photo of Nathaniel's first experience ice skating! Unfortunately Nathaniel is currently in the hospital with a virus. Rich is with him this morning to give me time to rest. I have enjoyed the quiet moments to reflect on my writing and reread some of this year's blog posts. Here are the top five most frequently read 2016 blog posts:
Nathaniel turns four tomorrow. Since it falls on Thanksgiving Day this year, we gathered family and friends a couple weekends ago to celebrate. This birthday carries some significance - the first that Nathaniel can eat cake. I decided on a Very Hungry Caterpillar theme to commemorate and had a lot of fun making with the preparations, especially making the cake decorations out of fondant. Nathaniel blew out his candles and then signed "awesome." Yes, Nathaniel everything about this milestone is awesome. Happy Birthday!
"What if adopting Nathaniel means you can no longer do the things you enjoy doing as a family or individually?" asked the adoption case manager during our staffing interview.
Rich has just finished explaining his and our older boys' involvement in Boy Scouts of America, including the three backpacking trips to Philmont High Adventure Camp. There were fourteen individuals sitting around the table participating in our interview. They had interviewed other couples before us. They were charged with the task of selecting Nathaniel's forever family. Prior to this question, they had described Nathaniel's medical conditions and the many concerns physicians had for his future. The adoption case manager had explained that it was uncertain if Nathaniel would ever walk. "What if he can't hike and go backpacking with you?" the she pushed Rich a bit more. Nathaniel took his first steps nine months later, just a few months after we finalized his adoption.
had a heavy heart Monday evening when I merged from Interstate 74 south to 275 east. I do not need a map to get to our Cincinnati hotel anymore. I know this city well. We walked into the lobby, and Nathaniel started to cry. He was inconsolable through the check in process and worse when we got to the room. He stood frozen halfway between the bed and the door, held his trach and cried. I had to wipe tears too. Everything about arriving in southern Ohio for another group of appointments felt hard and heavy and sad to both of us. We've done this a lot in the last year. Many of the visits produced physical pain and difficult news. Neither of us wanted to be here.
In the process of settling into the room, Nathaniel's g-button was pulled out. My twelve-year-old niece was in St. Louis last week for her annual "Camp Rankin" visit, and I asked her parents for a second week so she could be my travel companion. She is brave beyond her years. She responded quickly and confidently to instructions and helped to reinsert the button. Nathaniel laying on the floor without his shirt led to tickling and giggles. Ellie is old enough to be a fantastic mother's helper and young enough to be a buddy to Nathaniel.
Three years ago this morning we met Nathaniel.
He was hospitalized the last week in June for a virus, and one of his physicians came by for a visit. It was primarily a social call. During our conversation we reflected on how little we knew about Nathaniel three years ago. I remember vividly meeting her for the first time in July, 2013. I remember how patiently she explained the airway surgery Nathaniel would need. Though the medical team knew his airway was complex, they anticipated reconstruction. Surgery would be the summer after he turned three - this summer. They anticipated a week in the hospital. They had good reason to hope that he would live tracheostomy free and gain vocalization. Three years ago today we started down a journey of medical complexity that we thought was temporary. Everyone thought it was temporary.
Nathaniel and I have been lazy all morning. Actually, we've been lazy all week. He was released from the hospital Monday, but it was not until Thursday night that I felt we were on top of his frequent vomiting. Wednesday night was rough. Concerned he was spiraling down toward dehydration again, I messaged our house church (small group at church) and pastors to pray. Slowly over the course of the day, he improved. He felt well enough to join his big brother, Peter, in a hammock outside on Thursday afternoon. Peter will be working in Alaska this summer as a supervisor at a Boy Scout camp. The hammock is newly purchased to take with him. I think the quiet afternoon will be a special memory for both of them.
I have about an hour. I have been wanting to get an update posted to the blog for weeks and have not taken the time. I am going to take this hour and publish whatever comes at the end of it.
Here goes - ignore spelling and other such errors.
Rich and I left Cincinnati knowing airway surgery would change Nathaniel's life. And ours. We were right. We did not know about all the different ways that would happen. In general, everything about living on the edge of life and death is gone. We no longer mentally ask ourselves the thousand safety checks we used to ask: "Are his hands too close to his trach?" or "Who has eyes on Nathaniel?" or "Did he aspirate when he vomited just now?" Life has been taken down a level in intensity. We change trach ties alone now; Nathaniel's three-year old restlessness with this process and grabby hands at his tube will no longer means a potential oxygen deprivation accident. We drive alone with him. We have left him with his older brothers to run to the doughnut shop on Saturday mornings. He plays free with other children and away from our side on the church playground after services. On Thursday, I was in Houston at the conference, Rich was at work, and Nathaniel was home for eleven hours with a nurse who had worked only one shift prior. Quality of life, getting on with life, enjoying life moments.
Another way that life has changed is that Nathaniel has had more respiratory illnesses in the couple months since surgery than he did in the six months prior. We knew this would happen. The freedom to live life means we are in contact with more people and more viruses. He has jumped from one illness to another; most have stayed very minor, however one lingered long enough that it developed into a secondary tracheitis infection. But he has not been hospitalized. Airway surgery removed aspiration. Without aspiration, less pneumonia. Even with the increased viruses, we are using fewer breathing treatments, and Nathaniel requires less suctioning than prior to airway surgery.
We had a very happy little guy at dinner tonight. Nathaniel ate orally. And he loved it.
I had one overriding thought when the team in Cincinnati told me we could start oral feeds - "I want this to be simple." Advocating for someone's safety is hard work. Watchful waiting for three years is stressful. As we find a new routine to life post surgery, we are just beginning to see how much strain our whole family has lived with for a long time. Intense feeding therapy is the last thing I want to start right now.
When Nathaniel discontinued oral feeds, we decided to keep him at the family dinner table. He prayed with us. He listened and participated in our conversations. He received his g-tube feed while we ate. Almost nightly, he would reach for our silverware, plates, and glasses. I broke my heart. Often he ended the meal with someone's fork or spoon in his mouth. We kept his oral stimulation toys and other quiet activities available, but I think holding and pretending to use a utensil, even without food, gave him pleasure and helped him feel like he belonged.
Last May our daughter suggested that I put together an list or index for blog posts about Nathaniel. When she tells people that she has seven brothers, that the youngest is three years old and the oldest is thirty-three years old, she gets a lot of questions. She likes to send the curious to my blog for information about Nathaniel.
"But where should they start to read, Mom? And how do they find specific posts?"
I have been working on this list since that conversation. The process of compiling and specifically having it completed today, the second anniversary of Nathaniel's adoption, has been a special gift to myself. It was good to reflect on where we have been, what life has been like for Nathaniel and our family, and how God has been faithful through it all. After spending hours rereading these old posts I must add my AMEN to Jason Johnson's words tucked in a recent blog post, "foster care and adoption are not just the process by which we may change a child’s life but also the means through which God will radically transform ours."
Nathaniel's airway surgery is about a month away. Now that Christmas and New Year's is over, it seems close. We wanted to share our plans and the needs our family has as the date approaches.
Both Rich and I will go to Cincinnati for the surgery. We have been told to expect a five hour surgery and for Nathaniel to spend a week in the Critical Airway ICU afterwards. Nathaniel will have a new stoma and possibly medical new care routines that we will learn before his discharge. We have been asked to stay in the Cincinnati area for a second week to be close to the surgeon and hospital in the event of complications. There are three different ways you can help our family now.
Yesterday I visited my own blog to find a link for someone and realized it has been two weeks since I posted last. It takes our family at least a week to recuperate after one of Nathaniel's hospitalizations. Thanksgiving, recuperating, and now preparing for Christmas have all tumbled into each other and filled the empty crevices in each day.
Rich took off a couple hours early one Friday evening so we could go cut down our Christmas tree. With two of our older boys working retail, finding times for this traditional family outing was tricky. We can't remember the year we started going to this tree lot, but we think it has been around twenty-years. It is one of my favorite Christmas moments.
I had hoped to post some photos for Nathaniel's third birthday last week, but a sudden hospitalization reorganized all plans. He had a runny nose and sneezes on Friday, November 21st, and I assumed it was a virus. Nathaniel has had a handful of viruses that come and go like they do for most children. He woke up coughing Friday night and threw up. The night nurse needed to put him on oxygen - often our first indicator that he aspirated.
I can not believe it has been two weeks since Nathaniel and I returned from Cincinnati. One reason is that within a couple days of getting back, I learned the dates of when we go again. It seems my life is now categorized under two labels: "Has to be done before Cincinnati" and "Can wait until after Cincinnati." By mid-November we will have been there three times in three months. It does not leave much room for the "Has to be done before Cincinnati" things.
We were chosen as Nathaniel's adoptive family on June 27, 2013. We spent the month of July learning about his care and preparing to transition him to our home. We teased that we had a one month pregnancy, but in reality it was even shorter because we took a previously scheduled vacation for a week mid July.
We needed EVERYTHING. I remember feeling very overwhelmed when Rich and I walked into Babies R Us early that July. Baby-hood had changed a great deal since we had prepared for our last child fourteen years earlier; even greater changes were noted since we had prepared for our first child twenty-three years earlier. When my other children were little, I had fallen in love with soft baby yellow. I searched for yellow sleepers and yellow receiving blankets. I learned quickly that 21st century baby world is genderized pink and blue.
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.
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.
Daily Life
View the entire daily life archive here.
Medical Complexity
I typically use Nathaniel's quarterly GI appointment as a reason to write about his progress transitioning from g-tube to oral feeding. I skipped writing about April's appointment because there was nothing spectacular to share. Nathaniel's extended PICU at the end of February required us to return to full g-tube feeds. He lost two pounds while sick and had no desire to eat orally when discharged. I write a bit about that recovery here.
I probably should have written about feeding through that season. The ebb and flow between success with oral feeding and relying on the g-tube has been very much a part of the transition.
Nathaniel is back to baseline.
He was discharged from Pediatric Intensive Care Unit to home a week ago Thursday. We reduced respiratory support from every four hours, to every six hours, to every eight hours, to every twelve hours. On Tuesday he no long needed oxygen when awake. By Thursday, he no longer needed oxygen when sleeping. Yesterday he was back to baseline. No oxygen requirement. No breathing treatments. No antibiotics. Little to no suctioning needed each day.
But he is far from back to normal. He lost two pounds in February. His arms seem thin when I help him dress. The jeans that were getting tight in January fit again.
He has little energy. The weather was beautiful this week and though we went outside, he would quickly seek a lap or chair to rest. His most playful day, when he plopped down on his tummy in the dirt and played with trucks, was bittersweet. I enjoyed watching him play in the sunshine. I was constantly aware of the proximity of his trach stoma to the soil and bacteria it holds.
During rounds this morning the team discussed how to adjust and increase feeds around respiratory treatments, coughing, and vomiting. I explained what I do at home. The Fellow commented almost under his breath, "That is a lot of work," and immediately I started to sob. In the middle of the hall, in the middle of rounds, in front of a team of professionals and strangers, I lost it. And I could not pull it back together.
I barely could whisper a response between breaths, "Yes, Nathaniel is a lot of work."
The team paused to give me time. All I could do was cry.
I crawled into bed at five thirty-three Monday morning and put my head on Rich's shoulder. It was the first time we had shared the bed that night. "Just coming to bed?" he asked, "How is he?"
"Yes. He's asleep. Thanks for the notes." I responded. Neither of us said more. For a few moments the only noise in the room was the hum of the air compressor for Nathaniel's heated humidity. I drifted into a light sleep, and Rich's deeper breathing resumed.
From under his pillow the alarm on Rich's cellphone went off. Five forty-five am. The shoulder I was using as a pillow moved, and then was gone.
"Do you hold him every time he receives a g-tube feed like breastfeeding an infant?" asked my friend, Kelly three months after we brought Nathaniel home.
Her question awakened a maternal instinct I had known five other times, but had not applied to Nathaniel. No, I thought to myself, but was hesitant to admit. Feeding Nathaniel involved a plastic button inserted through a hole into his stomach, a whirling pump hung on an IV pole, and a short tube connecting the two which delivered warmed formula at regular intervals. Feeding Nathaniel was dictated by a doctor; it was supervised and charted by a home health nurse. Feeding Nathaniel was a medical treatment.
At the time, Nathaniel was eleven months old. We had made the decision to feed Nathaniel in a high chair at a family meal as often as his feeding schedule allowed. Other feeds were usually given in his crib. Hours after Kelly's question, I settled into a rocking chair in his room and held him for the duration of his hour and a half g-tube feed; a mother's nurture and intuition was added to Nathaniel's feeding plan.
When I googled "camping with a tracheostomy" last week, I mostly found short lists of summer camps that accept medically complex children. A few forums suggested using an RV for traveling and camping experiences with a trach kiddo. We rented a large RV in 2008 and took five children to the Devil's Tower, Badlands, Mount Rushmore, Yellowstone, and the Grand Tetons. I can easily imagine how convenient it would be to "RV camp" with Nathaniel. Except we do not own an RV; we own a tent.
My granddaughter can roll over. She did it the first time when her Nana, my son-in-law's mother, was taking care of her. My daughter called me to share the information excitedly later that day, "Blaise can roll over! Well... nobody actually saw her do it, but Jan laid her down on her back and went to heat her bottle, and Blaise was on her stomach when Jan came back."
I am jealous. Not because the other grandmother witnessed this milestone. Rather, my emotion stems from the contrast I sense in adults' reactions to Blaise and Nathaniel learning new skills. It only took one time of rolling over for all the adults in Blaise's life, me included, to consider the skill achieved. Blaise CAN roll over. There is an unspoken assumption there - she did it once and we fully expect she will keep doing it. She CAN roll over. It means thinking twice about leaving her on the couch or bed. It means keep dangerous things further away. Once was all it took.
Nathaniel climbed through the van door and scooted past his car seat to grab his water bottle. We had stopped at park near home after therapy; we were leaving for home. "Thirsty Buddy?" I asked. He nodded, opened the folded yellow straw top, and tipped the bottle up. A drop of water dripped down his chin. We have been working on drinking since February. I have bought countless cups and water bottles. Some with lids leak on the cup side. Some with no lids leak on the Nathaniel side. Some seem to fill his mouth quicker than he can swallow and the leaking comes from his lips. I had high hopes this new one would work. Nathaniel handed me his cup and crawled in his car seat. I wiped his chin, buckled him, handed back the cup, and prepared to leave. I had high hopes the first drip was an opps. Before the van was to the park entrance, I had to pull over. As he continued to drink, water continued to drip down his chin and into his stoma causing him to cough and needing suctioning.
View the entire medical complexity archive here.
Six.
We are celebrating Nathaniel’s sixth birthday this weekend. I’ve probably said it about each year, but it is unbelievable that he’s six. When you parent and love a child who has bore labels like “prognosis: poor,” “failure to thrive,” and “unadoptable,” every year is a milestone. When that child has survived multiple episodes of sepsis, respiratory failure, accidental trach decanulation, aspiration pneumonia, medical formula intolerance, and dehydration, every birthday is significant.
The first word that comes to mind when I think of my mom is creative. She showed her love by making you something. After high school she worked at a fabric store. Sewing remained a life long enjoyment. When I was in high school she made every dress I wore to a dance. There was a plaid skirt and powder blue spaghetti strap silky top for my freshman year. A pink satin with fitted bodice and 1980’s puffy sleeves for my senior prom. I loved those outfits. But Mom didn’t do zippers or button holes.
We celebrated Nathaniel's birthday a few weeks ago; early because his actual birthday falls on the Thanksgiving holiday weekend. Five seems magical and unbelievable. It seems to have happened overnight, and at the same time like he has experienced too much to still be so young. A few hours before his party, Josiah took him to the back yard to take some photos. They too are magical. They show clearly Nathaniel's wonder and joy for living.
I drove nine hundred and fifty miles across Missouri, Oklahoma, Texas, and New Mexico earlier this month. Rich and I won big at the only lottery we have ever played - the timing of a trip to Philmont High Adventure Scout Ranch. Scout troops put their request for a trek in a literal lottery eighteen months in advance. Josiah and Rich headed west by train with others from our local troop mid-June. Our personal win? Their one hundred mile backpacking trip ended on July third, the day before Andrew would participate in the 95th Maverick Club July Fourth Rodeo in Cimarron, New Mexico. Philmont sits just a few miles outside of Cimarron. Andrew took a full time cowboy position with the Scout Ranch last September. The opportunity to visit Andrew, see the guys come off the trail, and watch the rodeo called me west.
When Nathaniel was fourteen months old, our then speech therapist asked if he was pointing at things. She expressed the importance of pointing and joint attention in language development and stressed that these were precursors for further language growth. She advised that I should place Nathaniel, who was still new at sitting up, in the middle of the room with everything desirable out of reach. "Unless Nathaniel points to the object, do not let him have it. No toys until he points to them."
Nathaniel was perfectly content to sit quietly for full days without toys.
We share a middle name. I did not expect that. Nor I did expect how quick and unannounced grandmother tears come. They showed up first in the shower the morning I knew my daughter was in labor and again standing by the sink in her kitchen a dozen hours later as my husband washed birth off his granddaughter's head.
"Can Dad wash her hair before you leave?" our daughter asked. She has watched her daddy bathe babies for two and a half decades. While she closed her eyes and rested deep on her pillow, her father showed her husband how to wash a little girl's hair. And I wiped tears.
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!
Last May our daughter suggested that I put together an list or index for blog posts about Nathaniel. When she tells people that she has seven brothers, that the youngest is three years old and the oldest is thirty-three years old, she gets a lot of questions. She likes to send the curious to my blog for information about Nathaniel.
"But where should they start to read, Mom? And how do they find specific posts?"
I have been working on this list since that conversation. The process of compiling and specifically having it completed today, the second anniversary of Nathaniel's adoption, has been a special gift to myself. It was good to reflect on where we have been, what life has been like for Nathaniel and our family, and how God has been faithful through it all. After spending hours rereading these old posts I must add my AMEN to Jason Johnson's words tucked in a recent blog post, "foster care and adoption are not just the process by which we may change a child’s life but also the means through which God will radically transform ours."
I can not believe it has been two weeks since Nathaniel and I returned from Cincinnati. One reason is that within a couple days of getting back, I learned the dates of when we go again. It seems my life is now categorized under two labels: "Has to be done before Cincinnati" and "Can wait until after Cincinnati." By mid-November we will have been there three times in three months. It does not leave much room for the "Has to be done before Cincinnati" things.
I had to leave the ranch by six this morning and am in Denver waiting at the gate for my flight. I know life will be full speed ahead when I get home so I am hoping to post these last photos before they start boarding. I think for the sake of time I might just put all the remaining photos in a gallery. There will be some extras from earlier days and a few I took of Andrew's leather work on Sunday. I was especially captivated by Andrew's hands this visit. They can lay a gentle rein to a horse's neck, force the weight of a trailer onto a hitch, and create beautiful works of purposeful art. It is a special gift to have been able to come and see him in his environment and doing the things he loves. We talked some this weekend about the fact that he lives so far away. The sadness of that truth is lightened by knowing he is happy.
Andrew was out of the house and in the saddle by six this morning. They had to move one hundred and twenty mares and their foals to a new pasture. He was back at the house around nine, we had breakfast, and then left for Cheyenne. It was go to town day.
I was awake and out of the house before sunrise, and I was over an hour late. Andrew and his boss, Jed, had saddled five horses, taken them by trailer to the arena, rounded up about fifteen leased yearly Corriente steers from the pasture, and already run a few through the shoot by the time I arrived. The cowboys had forgotten to tell the insects the day had started; the grasshoppers and cicadas were still singing the night songs as the blue of dawn was just fading.
By four o'clock, my lips were stinging chapped and every time I put my teeth together, I crunched dirt. The water we got from the red pump in the back pasture was almost gone. It was warm. I was hot. And there was more work to do.
Having now experienced daily life on a Wyoming ranch leads me to suspect there is always more work to do.
Our son, Andrew, works as a cowboy at the Bartlett Ranch in southeastern Wyoming. The ranch breeds and sells quarter horses. Andrew "rides the rough ones and ropes the wild ones." I flew to Denver last night and drove up to the ranch to spend time with him for the holiday weekend. It has been a year and a half since I've seen Andrew. It is good to be with him.
I know Nathaniel's private duty nurses and therapists are watching the blog for information how he is doing on the trip. My first Lakeside post was read and shared far more than I expected, but I doubt it gave Nathaniel's people back home the nitty-gritty details they want. Here you go, Team Nathaniel. This one is for you.
Nathaniel's week in four words: He is doing great.
I can walk you past four generations of Lakeside cottages on my father's side of the family and three generations worth on my mother's side. "A Place Like the Whole World Ought to Be" was the slogan I heard repeatedly as a child of my hometown on the shore of Lake Erie. Most people experienced the Lakeside Chautauqua for a week of vacation; I became a year around resident at age eight when my parents divorced. When a child grows up in the place the whole world ought to be like, she thinks differently of the world. Every time I come home I realize a bit deeper how place influences who we are and who we become.
Two years ago this morning we met Nathaniel.
When these days come up, I realize how new I still am to adoption. Which day is suppose to be the most significant? The day we learned he was our son? The day we met him? The day he came home? The day his adoption was finalized? This one, the first time we met and held him, feels so important.
We were driving back from meeting Ellie's mom on Saturday when my phone rang. An unknown number in Wyoming. My heart quickens when I see these things. Our son, Andrew, is a cowboy in Wyoming and two weeks ago was Colt Starting Week Clinic. He was responsible for putting first, second and third rides on colts that were previously only halter broke. Last week he continued to work with those three horses, and seven other equally fresh beasts, day after day by himself ten miles down a dirt road from the next ranch employee. Unknown phone numbers from Wyoming could be a hospital, or a doctor, or his boss. Either could be delivering bad news.
Or it could be Andrew borrowing someone's phone to ask his mom how to order a shirt by the neck size. Breathe.
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.
Family
View the entire family archive here.
Nathaniel is back to baseline.
He was discharged from Pediatric Intensive Care Unit to home a week ago Thursday. We reduced respiratory support from every four hours, to every six hours, to every eight hours, to every twelve hours. On Tuesday he no long needed oxygen when awake. By Thursday, he no longer needed oxygen when sleeping. Yesterday he was back to baseline. No oxygen requirement. No breathing treatments. No antibiotics. Little to no suctioning needed each day.
But he is far from back to normal. He lost two pounds in February. His arms seem thin when I help him dress. The jeans that were getting tight in January fit again.
He has little energy. The weather was beautiful this week and though we went outside, he would quickly seek a lap or chair to rest. His most playful day, when he plopped down on his tummy in the dirt and played with trucks, was bittersweet. I enjoyed watching him play in the sunshine. I was constantly aware of the proximity of his trach stoma to the soil and bacteria it holds.
During rounds this morning the team discussed how to adjust and increase feeds around respiratory treatments, coughing, and vomiting. I explained what I do at home. The Fellow commented almost under his breath, "That is a lot of work," and immediately I started to sob. In the middle of the hall, in the middle of rounds, in front of a team of professionals and strangers, I lost it. And I could not pull it back together.
I barely could whisper a response between breaths, "Yes, Nathaniel is a lot of work."
The team paused to give me time. All I could do was cry.
I crawled into bed at five thirty-three Monday morning and put my head on Rich's shoulder. It was the first time we had shared the bed that night. "Just coming to bed?" he asked, "How is he?"
"Yes. He's asleep. Thanks for the notes." I responded. Neither of us said more. For a few moments the only noise in the room was the hum of the air compressor for Nathaniel's heated humidity. I drifted into a light sleep, and Rich's deeper breathing resumed.
From under his pillow the alarm on Rich's cellphone went off. Five forty-five am. The shoulder I was using as a pillow moved, and then was gone.
I knew as I walked out of the Pediatric Intensive Care Unit in November that Nathaniel would recover from the acute illness requiring swift intervention. His body was already responding to the IV fluids. However, I also knew that my heart will never recover. There is no ointment or medicine or surgery that can fix how it breaks when I have to pin Nathaniel’s little body to an emergency room gurney and hear him plead with his voiceless screams and beg with his searching eyes for the procedures to stop.
Nathaniel climbed through the van door and scooted past his car seat to grab his water bottle. We had stopped at park near home after therapy; we were leaving for home. "Thirsty Buddy?" I asked. He nodded, opened the folded yellow straw top, and tipped the bottle up. A drop of water dripped down his chin. We have been working on drinking since February. I have bought countless cups and water bottles. Some with lids leak on the cup side. Some with no lids leak on the Nathaniel side. Some seem to fill his mouth quicker than he can swallow and the leaking comes from his lips. I had high hopes this new one would work. Nathaniel handed me his cup and crawled in his car seat. I wiped his chin, buckled him, handed back the cup, and prepared to leave. I had high hopes the first drip was an opps. Before the van was to the park entrance, I had to pull over. As he continued to drink, water continued to drip down his chin and into his stoma causing him to cough and needing suctioning.
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.
Nathaniel pulled out his tracheostomy tube tonight. A first since airway surgery. The setting was close to what I have always imagined to be the worse possible. We were northbound on Interstate 44 returning to the St. Louis area from visiting our daughter and husband. The highway had just widened to three lanes. I was driving; our van was in the middle lane with semi-trucks on both sides of us. Everyone was traveling around seventy-five miles an hour. Rich was beside me in the front, trouble shooting a problem with Nathaniel's talker. We had just driven trough one of many hard rains. I heard velco and Nathaniel's breathing sounds changed.
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!
Faith
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My roots are in the Chautauqua movement. My maternal and paternal ancestors owned cottages in the Lakeside Chautauqua on Lake Erie. My early childhood was punctuated by summer visits; by age eight, I was a year around resident in the same. Summers found my community overrun with vacationers enjoying the culturally rich environment. Wikipedia sums it up well, “The Chautauqua brought entertainment and culture for the whole community, with speakers, teachers, musicians, entertainers, preachers, and specialists of the day.” I have written in the past about how access to such professionals influenced who I am today; it predestined me to be a life long learner.