September 21: The 1 year mark

 

“I can’t believe today is here! I even showered for you!”- I texted Jessica

It was going to be a very big day.

6:30am, September 21, 2017.  School was out for Rosh Hashana. It was unseasonably warm, and I knew I would running after the boys until she handed in the early afternoon, I donned the only stretchy shirt I had left that fit.

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I snapped a quick picture of proof as I finished drying my hair. Jonathan asked to watch television as William looked at me, eyes wide and cheeks red. “Potty!”  I ushered William upstairs to the bathroom and gave Jon permission to watch tv.

“Only one show, Buddy. Too much t.v. will hurt your brain.”

A few minutes later Jonathan appeared in the doorway, looking down and eyes half closed. “I hurt my head”, he mumbled. As I went to him, William bolted off the throne. As I darted back to Will, Jon began to cry. He was burning up.

The day before he had collided with another student at a Fun-Run. Although the bump was minor, I wondered if that had anything to do with it. I grilled him on what happened, if he had jumped off the couch and hit the table, etc. but he couldn’t answer me. He took a step forward and veered to the right like a drunken sailor.

I laid him down, checked his pupils and tried to sit him up. His head was starting to pour sweat. I dashed back to William and threw his clothing on. I frantically texted my husband, which was ridiculous. He couldn’t get any messages for 8 hours at least; he was deployed to the other side of the world. I don’t remember sending the message.

“CALL ME IMMEDIATELY.”

While I called my mother to triage and explained the symptoms, I tried to help Jonathan walk. At this point he was a rag doll and vomiting. I hung up and packed a bag for the ER.

“I think Jonathan has a concussion. I’m headed to the ER”, I typed to Jess.

I put Jonathan onto the couch and ran to gather supplies, snapping a picture for the doctors.

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Meanwhile, in God’s timing, my man had forgotten something in his room that he needed. When he entered the room he saw his phone message and called me. I was trying to carry our 60 pound son who was losing consciousness down the stairs as I told him what happened. He hung up and told me to hang on. 20 minutes later his buddy Ryan, who was on his way to work at just the right time, arrived to drive the car so I could keep Jon awake. He sped to the local hospital while I desperately tried to keep Jonathan awake and get water into him. These emergency moments kick me into a fight response that is all too familiar. The adrenaline almost has a taste. The heart races in a quick beat,like a rowing team stroking paddles in unison and propelling the boat on at high speed. I run and bounce on the front of my feet, as if running track. It feels faster and more alert.

 

We careened into the valet drive, encircled with orange construction fencing. While I unbuckled William and wrestled with the double stroller that hadn’t been opened in years, Ryan carried Jonathan’s limp body through the glass doors. The valets stared at me, pumping with adrenaline and pregnant belly leading. They were quite relieved that I wasn’t the emergency.

Ryan darted out of the doors a moment later. “What’s his birthday?” I shouted the date. “How do you not know your kid’s birthday?” one asked. In a gasp I answered, “He’s not the father.” The two men stopped and looked at each other, eyebrows shooting up. I pushed the double stroller in at full speed.

Quickly, Jonathan was in a room and 4 people asked me repeatedly what he hit his head on. Guilt and frustration consumed me as I said I didn’t know. Every time Jonathan lifted his head, he vomited and collapsed. The nurses tried to cut his shirt off, which sent him into hysterics. It was a fight to secure the neck brace and get vitals. Shortly afterward a CT was called for, forcing me to remain outside. I prayed fervently that Jon would be calm as Ryan, whom he had met once before, stayed with him. William calmed me by waving and flirting with the nurses. He was having the time of his life.

I texted Jess and assured her I should be back home by 3 pm to pick her up. Surely this was just a bad concussion.

At this point I posted to facebook and asked for prayer.

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After about 15 minutes, Jonathan returned. I held his hand and tried to calm everyone. Our doctor was prior military, so he knew the correct questions to ask and joked about Murphy’s Law. He left and suddenly three distinguished looking men with white coats entered.

” The CT scan showed massive internal bleeding.”

I panicked. How could he have hit his head that hard?

“We can’t see what caused it. It could be a vein, a tumor- we don’t know. We are flying him to Hopkins in Baltimore. The team will be in the air shortly. He may be in surgery by the time you arrive. I understand that you are military.” He turned to Ryan. “You need to get his father home, immediately.”

I turned to Ryan. “You need to call him. He will worry about me if I tell him.”

Time both stops and speeds up. I repeated the doctor’s words in my head, looking away from everyone’s faces to process. I’ve been given “life changing news” often enough to have practiced processing. I process best by both reading and hearing. I’ve learned to try processing as Jonathan does. It is almost like reading their words in a bubble on a comic strip. I understand why Jonathan looks away from faces when people speak; he “reads” their words. The message was clear- your son may die, and soon.There is nothing you can do to change it. Just hand your son over to us.

Ryan disappeared down the hall, phone in hand. He returned shortly afterward to take William. His lovely wife Allie had brought their three children to the waiting room; they took him for the night. That was a concern- Will wasn’t sleeping through the night and could be a challenge. He adored the time with the older kids and slept, God be praised.

The doctors stared at me. “Where’s your bathroom?” I asked. I had been drinking water to stay calm and was 7 months pregnant, after all.  I looked into the mirror. We were back in the hospital mode. I took a deep breath and mentally  girded for battle. My children needed me.

I returned and talked to the military doctor. Yes, I know where Hopkins is and how to get there. My other son is a cancer survivor. No, I’m not having contractions. Can I go on the helicopter?

If you have a family member with autism, you can imagine how putting Jonathan, strapped to a stretcher,  on a helicopter with strangers and potentially entering surgery without me was terrifying. As Ryan and I ran to the car, I talked too much (to process) and he sped through lights to get me to my son.

Thank God I knew Baltimore. Thank God going to Hopkins was second nature. Thank God we would be battling on familiar ground. All the cancer experiences we had here now made sense. It was preparation for this day. The eternal glimpses of God’s planning comforted me in teh midst of chaos. It was a solid anchor as this new storm pitched my boat.

As we screeched into the Emergency Room circle I ran in, once again frightening people that I was in labor.

“My son arrived by helicopter.” I panted. “His name is Jonathan-”

The guard smiled. “Oh honey, I knew you were coming. Come right here.” She stood and ushered be through the scary, white doors. The Emergency OR room was full of people who were surprisingly calm. Jonathan was on the table, awake and looking at the monitors. “Momma!” he squeaked.

The adrenaline raced. I marched right in and looked for the lead doctor. “Surgery?”

In this moment there is not true fear. It is more of a reactionary caution. I lived in a hospital for 6 months; this had become second nature, in a way. There is some truth in what they say about battle-tested mothers. It allowed me to focus and remain steady in the moment. If I panicked, the doctors wouldn’t be able to focus on Jonatha.

They informed me that he had been calm, done very well and the bleeding hadn’t spread. He was stable and would be taken upstairs as soon as the doctors reviewed him. 8 people asked me if I wanted to sit and asked if I was okay.

“How are you not freaking out?” one darling blonde nurse asked.

“This isn’t my first rodeo. My other son was treated for leukemia and had maintenance here. The nurses looked at each other. “Can we cry then? We are moms too and someone needs to freak out.”  God bless nurses. They are some of the best people in the world. They walk through Hell with you and come out smiling.

It became quiet for an hour as Jonathan began to open his eyes and speak. He was fairly calm as we headed into an MRI. By now the adrenaline began to fade. I sat in the waiting room and started to call family members. Ryan remained with me, steady and in contact with Command. Jonathan was nearly done when the good news came: My man was coming home. He would be wheels up as soon as possible- and it is no easy task. Relief flooded my body and soul. Elizabeth squirmed in my belly.

Once stable, we were transferred into the PICU. When I met the new team, the barrage of questions began- in both directions.My adrenaline was high and I was in full hospital mode. The athletic clothing and tennis shoes kept me moving.  “Are we NPO for potential surgeries?” I asked the doctor. She blinked. “Are you medical?” “Nope. I’m just a veteran cancer mom. She looked shocked and relieved. We went through the hundreds of medial questions and I tried to lighten the mood with humor. Laughter is my defiance in the face of fear.

Over the next several hours phone calls and texts flew. Jessica was picked up at the airport and was determined to make it to the hospital, somehow. Ryan stayed on the floor and relayed all the information to command. I felt the need to text hundreds of people but couldn’t keep up with all the information. Our wonderful pastor Brent came to the hospital to see what we needed and to see us. Messages poured in. My mother let me know she was about to board a plane.

As the sun began to set, Jonathan started to sleep. Ryan went out for food. He returned with a sandwich for me and the gentle reminders that I needed to eat. Ryan stayed until he was sure that another coworker, after a LONG day, would be picking up my mother room the airport in the middle of the night.

Jonathan was in and out, terrified and desperately clawing the neck brace. He moved gingerly and fought the nurses. I never left his side.

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As the sun set, the room became quiet, except for the beeping pumps and rounds of doctors. I met an incredible surgeon- Big Al- Dr. Al Cohen. He is at the top of the field and filled me with confidence. We were told that we would try to keep Jon stable as we watched the blood. If it remained steady, we would test again and then operate. We just remain, monitoring vigilantly. At the slightest wrong movement, we may be thrown into emergency surgery.

 

Shortly after, as if from a dream, Jess walked into the hospital room. Our early morning text about her visit seemed like years before. Indeed, it was in the part of my life now marked “Before”. We hugged and she immediately went to Jonathan. This was her first time leaving her 4 year old, and yet she came right to the aid of my kiddo. He had been cold and shaking, so when she pulled out the special red sweatshirt she purchased for him, he was thrilled. He wore it constantly for months.

She had a bag with a burrito, changes of clothing and things I needed to stay overnight.

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The hours flew and soon it was 10pm. I wedged my pregnant self onto the bed with him and listened to every breath. I prayed. I begged God to spare Jonathan.  Jonathan told me Elizabeth would arrive before I was even pregnant; I was scared God might take Jonathan just as he gave me Elizabeth. I pictured attending my child’s funeral pregnant, or with a newborn. I prayed his father would get to see him. I prayed for my husband’s safety. The air in the room almost had a taste to it. I prayed over my son and sang to him, stroking his fluffy blonde hair. All I can say about trusting God in that moment is that I trust my Commander. Through all I have been through, He has been faithful. Keep going. Just press on.

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We lived through the night. Not survived- but truly experienced life in all its wonder. It was the start of a new life, a new reality, a new diagnosis, a new story, and the Rosh Hashana- the new year.

It’s been a year and darn it, we’re still living.

 

 

 

 

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Jessica’s Side of the Tumor Story: Returning to Wonderland

“I knew who I was this morning, but I’ve changed a few times since then.”- Alice in Wonderland

 

In 2015 I met Jess. We were just out of chemotherapy and were learning to stand on shaky feet- literally, in William’s case. We lived life together as our husbands were away for the majority of the year, facing extremely hard times together. As often occurs, true friendship was forged through fires.

She was stationed in California as the Big Sur fires hit, while I was stationed in Kansas during the plagues-  and then Maryland again. We planned an amazing long weekend for Sep 22-24, but she surprised me with news that she would arrive a day earlier, September 21. We planned a glorious reunion with our dear friend, Sofia. We joked about not having any emergencies or crises until everyone was safely in one state and we could handle it.

Flying from California to old friends in a past duty station would be like returning to Wonderland, we joked.  “We are ALL Mad Here”.

The morning of her arrival, Jonathan brought me a small journal with Alice in Wonderland on it. I was amused and texted Jess the following picture: IMG_3308

My morning started at 2am in California and ended around 1am in Maryland. 

On the ride to the airport, the shuttle driver asked me where I was going. “To Wonderland”, I replied. Without a pause he shrugged his shoulders and said, “Down the rabbit hole I go.”  It was the perfect response.

I sent Kaitlin a text to let her know I’d arrived at the airport and my flight was on time. She replied with, “I think Jon has a concussion. We are going to the ER.” 

Not the response I was expecting. Something you should know about Kaitlin and I, we deal with hard things by making (what others would probably perceive as) inappropriate jokes.

“He couldn’t wait 6 hours?! I’m ONMYWAY!” 

By the time I made it through security and got to my gate, I had spoken to K and knew they were looking at something much more serious than a concussion. I didn’t know it was possible to feel anxiety, worry, frustration and relief all at the same time. My flight was on time and I’d be there by early afternoon. Picture Mrs. Doubtfire “Help is on the way, dear!!!”

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At the very least, I was already en route to Maryland. I wasn’t at home getting this news and feeling completely powerless, and trying to figure out how to get out there quickly. 

Thank goodness for inflight WiFi. During my 5 hour flight from CA, I was able to stay in the loop with everything on. Oh, and I cried. A lot. Frustration, mostly. But also, worry about Jon and Kaitlin, who needed to stay calm and not go into early labor, were intense. 

Another friend picked me up at the airport and took me to get a car. We went by K’s house and packed a small bag of necessities and did a quick straightening up of the house so she didn’t come home to chaos. She repeatedly apologized for Jon’s vomit she insisted I would find. I had to search and it was easy to clean. K’s dramatic like that.  I headed for Hopkins with Chipotle in hand for Kaitlin and I and a red “Daniel Tiger” sweater that I’d tracked down for Jon, at 5:15pm on a Thursday evening. I lived in MD for 2 years and managed to never drive in Baltimore. I’m from a small town and I don’t really even like to drive. But I headed into Charm City… at Rush hour. It *may* have taken me close to 2 hours to get there, but I survived. The list of people I would do that for is short. Come hell or high water, I was going to get to them. Thankfully, it was only traffic. 

  I sat at the hospital with Kaitlin and Jonathan for hours that went by too fast. I had been looking forward to this trip for months, so I was more than happy to keep her company while my little buddy slept. 

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(Kaitlin here: Jon regained consciousness and smiled at her when Jess came in. He lifted his head to see her and promptly threw up on her hand. She didn’t flinch. She just cleaned it and kept holding his hand. During a HORRIBLE IV stick that ensued, he asked for her. When he was able to sit up without getting sick that night, I knew he was improving.)

Ya know what really stinks? Watching your best friend go through this awful thing and being powerless to change it. So I did what I always do in a crisis: I cooked. I cleaned her kitchen. When she came home from the hospital, I would make her eat. I tried to provide what little comedic relief I could in such a situation. 

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The day I headed back to the west coast, Jonathan had an MRI. I sat waiting for both my plane and an update. Surgery would be happening at the end of the week and I would be on the opposite side of the country. Leaving was HARD. I was looking forward to getting back to my husband and daughter, but devastated to be leaving these people who, 2 years earlier, had become my family. 

 

It is wild to think of how that day went so quickly for me. As I put out information of what was happening, dozens of people said they wished they could get to me. I told them not to worry- Jess was being their hands and feet. Thankfully, those hands had a burrito.

She is now running the Monterey half marathon in Jonathan’s honor and will make a donation to St. Baldrick’s in his name.

https://www.stbaldricks.org/fundraisers/joggingforjon

 

Happy New Year

 

Happy New Year! A clear calendar break that separates what has been from what is coming— a marked day when The New arrives.
It is Rosh Hashana, the Jewish New Year. L’Shana Tovah!

Last year it fell on Thursday, September 21, and my sons had the day off from school.
I moved frequently as a child, which shaped my upbringing profoundly. I learned to speak in a place that was very Yiddish- heavy. Imagine my surprise when I moved south and no one “noshed” in a snack, got verklempt or admired someone’s chutzpah.
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Jewish in Jersey or Texas Beauty Queen, my cultures were heavy in hairspray. Teach your young ladies to stand strong!

Last Rosh Hashana The New arrived, but I wasn’t ready for it. It literally means “head of the year”. God has a sense of humor. On Rosh Hashanah Jonathan said “My head hurts!” and within an hour a brain tumor changed everything about our lives.

I have many dates that divide life into “before/after”. Most of these happen in the early Fall, from late August- November.

August: “We were wrong. Your child definitely has Trisomy 21. We can discuss your options.”
“William has lost a dangerous amount of weight, despite all efforts. Hospitalize immediately.””Get a bone marrow test to determine illness.”
September: Your son’s brain is bleeding. He may not survive the day. We may need immediate surgery. Call your husband’s  command and get him home immediately.

Go home. If you go into labor two months early, you will have two kids in the NICU.

October: Brain surgery.  Recovery. 3 procedures for William.
William has Acute Myeloid leukemia. Prepare to enter the hospital for 6 months.Your son’s brain bleed was from a tumor burst. It was malignant. Prepare for radiation and chemotherapy.
November: Radiation. Blood draws. Births. Readmission to the hospital for three weeks. Three years of friends bringing Thanksgiving dinner to us.

Since 2007, there has been a birth, a move to a new state, a deployment, and disability or life-threatening diagnosis every year. We settle into a new place in the summer, hoping to have our footing before Fall when our feet are knocked out from us we us.

Then God picks us up. Christ rescues the Fallen. God works in big ways during disasters.

 

The “Winter is coming” memes are coming, but Fall is already here. It is like watching your lactose Intolerant coworker eat second helpings of Mac and cheese, knowing you will be trapped in a car with them for hours. Scream and try to prevent it all you want, but there isn’t much you can do. Then once in the car, in starts pouring rain. All the emotion and dead bubbles under the surface, and when it emerges it isn’t pleasant. (Based in a horrific true story.)

Ignoring it, talking about it, trying to plan for all the emotions and fatigue that comes — there is nothing to do but endure it and keep living life. We have life, and life more abundant. We laugh- more abundantly. We cry- well, the reasons aren’t rational, but kids are like that.

We don’t have any resolutions, but we are resolved. This New Year, that is enough.

Head of the Year, friends. God is alive and working- and right now, so are we.

Keep It Holy

Right now people we love are gathered to worship. I had outfits and shoes ready, bags packed, all ready for our family to keep the commandment, “Honor the Sabbath and Keep it Holy”. The pastor will be preaching on the first of the Ten Commandments. …

Instead we are home. Calls and texts come from our loved ones at the church asking if we are alright. I tell them that everything changed in twelve hours and Jonathan can’t come to church. Keep the Sabbath Holy.  Holy does mean separate. Our family certainly is set apart.

 

We are waiting to hear back from the hospital about when to come in for a blood transfusion. Jonathan complained of a racing heartbeat and painful flutters last night, which are symptoms of one of his chemotherapy medications. His counts were borderline, so we are being careful.  This morning his chest pains are gone, but we now know the signs that he is crashing.

He plays more quietly. He wants to sit with Legos instead of running around.  He cries when overwhelmed. He naps. The only color in his face is the deep purple under his eyes.

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This summer was glorious. We went outside. We played with friends. We LEFT THE HOUSE! We went to church every week as an entire family, whole and thankful to be in the Lord’s house on the Sabbath. It built up such glorious hopes. We were in and among you, working and celebrating. Now we must separate and rest.

We must cleanse, purify, and prepare. Now I make daily assessments of their health and desire if sending them to school is worth the risk. We wait and obey, looking full into the face of the Worst Case Scenario, because we not only walk through the Valley of the Shadow of Death– we set up camp there.

I pull the last Clorox wipe out of the container.  Thwip. I wipe down the baby gate and stair rail one more time.

The laundry chime pleasantly dings. I move the disinfected sheets from the washer, Lucy, to the dryer, Ethel. I pull the laundry bin close to my hip and turn to my machines as I flip the light. They hum gently, as if to say, “We are ready when you are, Momma. Preferably before the mildew sets, though.”

Ball & Vance In 'I Love Lucy'

Laundry is forever.

lysollaundryUpstairs the oils are diffusing. Bottles of vitamins and probiotics are scattered across the counter. Industrial sized bottles of disinfectants crown each table top. Paperwork on chemotherapy side effects with emergency numbers hang on the refrigerator next to art from the first day of Kindergarten.

The Shadow of Death may cast over our home, but darkness makes it easy to see the Light. We purify the tables and our hearts. We face the things that would make us sick and destroy our well-being. We guard our home and our hearts.

We cannot go into the Lord’s house, but we still worship. We remember the Sabbath. Today, we keep it holy– but realize how broken, sick, and in need we are. We face the Big, Hard Questions, like Can We Trust God? He Is Good, but Is He Good To Us? What Will Hit Us Next?

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Never take it for granted that you can get up and go worship the Lord with others. Ever. We hope to be back in church soon… with Germ-X on our hands.

 

 

Our Parent Letter- Meet our Kid with Cancer

Back-to-school is in full swing!  I have a first grader and kindergartner, so apparently I should be in emotional turmoil. As we send our kids to school, we can worry what they will learn that ISN’T on the curriculum. Our kids will learn of things in the outside world that aren’t in your home… and it turns out my kids are probably the ones doing some of the teaching. Granted, they aren’t teaching your kids bad words… but students will sit down at their desks on the first day and see my sons. They look different. They act different. They have disabilities and have aides to help. They “act bad” sometimes.

Students will come home and ask questions. They describe my sons- and I never know what the parent will say. This year, Jonathan went to school to an AMAZING classroom and I wondered what the others would think about his hat, his bald head, his long scar, his difficulties, and why he leaves halfway through each day. Like many parents whose child is mainstreamed, I decided to write a letter. I’m sharing this with you for the sake of knowing what our lives are like, to know what to say to your own children, and also to remind us parents to CHILL. Also, don’t feel sorry for us. My kid melted down over the first day of school outfit too.

Dear parents,

Most kids ask thousands of questions a day, and your child may come home with questions about a classmate, Jonathan. Jonathan was diagnosed with a brain tumor in September 2017. A classmate with cancer can be scary and confusing; we would love to help answer any questions, provide books/resources, and help make friendship with a medically fragile student normal!

He continues to receive chemotherapy which affects him in several different ways, including hair loss. They may notice that he looks different. He is currently bald and has a long scar up and his neck and skull, so he wears stylish fedoras! He will lose weight and not have much of an appetite, so we love when friends sit with him at lunch and encourage him to eat up!

Jonathan will feel awful one day and better the next so we can’t always predict when he will be able to attend school, but his friendships in class are always an important part of helping him feel better. He won’t be able to attend school during cold/flu season due to his weak immune system and the danger of him not being able to recover from illness.

Jonathan will be receiving extra classroom support for his academics and for social support, as he also has autism. He may not speak to your child or make eye contact as much as he/she is used to, but he still comes home excited that friends played with him or talked to him. We hope that our kids will learn from each other as they learn together.

No parent ever wants to teach their child the word cancer, but we hope interacting with Jonathan will allow the kids to learn about disability, illness, compassion, teamwork, and- the struggle for every first grader- washing hands! .

Feel free to reach out! We look forward to a great year!

 

 

 

Lessons From The Queen Quilt

Allow me to introduce you to “Closet Coping”. No, this isn’t hiding in my closet to eat chocolate in peace or to have a gully-washer cry. I call that “Monday’s Routine”. No, Closet Coping is my repeated, semi-futile attempt to gain control of my surroundings and try to restore order by purging items and cleaning. I do this every time we move ( 9 times in 12 years) or receive a devastating diagnosis such as disability or cancer. Time and time again, I empty closets and dig to the very back of the racks, searching for items to give away.  I tangibly let go of something I had, subconsciously symbolizing the emotional process I prefer to stuff down.  (It took my YEARS to become so enlightened.)

On a very sturdy hanger in the guest closet is the Queen Quilt.  I have held and contemplated giving away at least 9 times now- and yet it remains because of what it symbolizes.

Many people have stood by my side and helped me endure great challenges. An especially unfortunate class of these women are were hopeful heroines who believed they could teach anyone to sew. Bless their hearts. On multiple occasions I have bravely sit at machines, threading, lining up fabric, measuring the quarter inch perfectly… let’s say that the B- my “two peas in a pod” felt project from 6th grade Home-Ec was generous. I was embarrassed to tell my mother, but she wasn’t concerned.  As a young woman my mother also took sewing lessons; eventually her teacher told her to just purchase the clothing and call it a loss. “You can buy clothes. There’s more to life, Sweetie. Julia Sugarbaker didn’t sew.” Validated and deciding to obtain other skills, I moved on.

As a young military bride, my husband was stationed in South Korea After a year apart, I eagerly moved across the world to live with that man I married. I embraced the move to a place where all things were foreign. Young, brave, adventurous, and lonely, I searched for  women to befriend.  I soon discovered that most ladies were young mothers who were learning/perfecting sewing skills. They gathered their materials weekly at the homes where older women would teach us how to stitch our materials and pieces of our lives together. Everyone worked on small baby quilts and accessories- our post exchange had limited options available.

I drove to a lovely older lady’s home with friends from chapel and took a “starter kit” of fabric needed for a basic baby blanket. I chatted while waiting for a turn on one of the 5 sewing machines, in awe of the skill that surrounded me. I was the only one in that room without a baby at home or in the womb; everything felt forced about those early lessons. It was still medically unlikely that I could conceive or carry a child, anyway. Why struggle to learn something without a clear purpose, like a Home-Ec grade?

I tried to concentrate. I couldn’t talk and concentrate. I had to be taught the basics around these young moms who knew exactly what they were doing. When I looked up to speak, my lines went crooked and I had to rip everything out.  I used the seam ripper more than the machine. I even named my ripper Jack. Only one lady chuckled at my Jack the Ripper joke. To sew well, I had to keep my head down, stare, and remain silent. It crushed me and made me feel terribly lonely to lack a skill and come out without deeper relationship. I decided to just purchase everything I needed. Dolly Parton doesn’t tailor her own wardrobe, and I don’t either.

However, my parents decided to visit over Thanksgiving and our inflatable bed needed bedding. Our military post exchange lacked options; all were low quality for the price. I mentioned this to a mentor, Mrs. Nancy. She was a master quilter, so I asked to borrow bedding for my parents’ upcoming visit. “This blanket is pretty”, I commented.  In her loving, sassy way she refused. “You can’t have it. You have to make your own. I’ll help you make one, instead.”   Mrs. Nancy insisted she could teach me. She would turn me- that lump of clay- into a masterpiece. I was sure I was crusty, dried pieces of cracked Play-Doh.We have some hilarious stories from those sewing sessions– stories for another time.

Hour after hour I sat at her oldest sewing machine. Somehow, I managed to make the quilt. It took WEEKS. I needed the expertise of a master to bind it together, which she did. That’s how it is supposed to work, by the way. You find someone who can do something and pay attention. She taught me much more than sewing, like NEVER touch another woman’s fabric scissors.

My parents arrived to great adventure that Thanksgiving. As they saw their simple guest room, I told them to their great shock that I made the quilt.  I have my mother’s sewing ability, so she didn’t believe me. I pointed out every small error as evidence that it was my own making. My mother hardly glanced at the errors.

“If you are looking closely for mistakes, you can find them. Looking at the whole quilt, it is impressive. Knowing you can’t sew, especially. It may have mistakes, but it’s remarkable.”

Who takes on such a daunting task for a first challenge? No one in her right mind, especially after failing repeatedly. However, my parents needed it and I decided to work hard to make something of value. The queen sized comforter at the PX would have been worked for a while, but I would have given it away without hesitation or attachment. Easily purchased, easily obtained, easily replaced. That first baby blanket remained unfinished and unbound for a year before I threw it away. With no baby to finish it for, it lacked purpose. That queen comforter has been used a handful of times, but it serves as as a reminder of a challenge I faced for the good of another. The purpose of my sewing mattered.

In this time of my life, I am threading pieces together, trying to make something beautiful out of pieces that are wrinkled and don’t seem to go together. I put down a line of thread and then have to rip it out again. I work, wanting to produce something but needing a master quilter to put together my pieces that invite pity.

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Studying the stitches of my life would show lots of imperfections, but the entire piece covers. Most women display their quilts to hang them beautifully until they are used. Mine is locked in the depths of my heart until someone needs it or a boy needs more building material for a fort. I’d rather use my messy, pieced together life for building and to help another to rest.

My life is a bit ripped up right now. I’d rather leave someone in stitches from laughter than sew beside them. I’m just not skilled in many things- and that is okay.

I have many quilts and blankets that others who love us have made. Each fills me with joy. The sewing skills come naturally to the makers, and they bless my with it. I appreciate their talent because I lack it.  One in particular fills me with hope. It was made for William, with scripture placed into the very fabric.

quilt WC

That is exactly what I hope my life will look like when all the stitches are completed and God binds up all the frayed edges. Covered in God’s word, well worn and cherished.

May God say, “It’s full of mistakes, but it’s remarkable.”  A life like that can’t be bought. It has to be made.

A Desperate Letter from the Warden Mother

If you’re reading this, it means my message got out. I’ve been trying to reach you for days or weeks- I’ve lost track from only sleeping a few hours a night. I have begun many messages to you, but I am under constant surveillance. All attempts to contact adults in the outside world have been thwarted.

Conditions have improved this month. Reprieve in the form of visitors provided much help and stability. The prisoners have not gained complete control, although we have acquiesced to many of their demands. For example, “yard time” has become a necessity. The boys spend hours outside, although this has increased the amount of water usage, mud production, and showers. The quest for materials that require less cleaning was successful; vinegar and baking soda volcanoes were a classic hit. However, the solution killed the grass in one area. The pattern looks like an abstract crop rhombus, left by aliens as intoxicated as the residents to called in to the UFO hotline to report it.

Daily activities remain unpredictable; doctors schedule appointments with only 48 hours notice and without warning, leaving us to scramble to make these necessary appointments. However, we have established excellent relationships with the nurses and staff. Cancer treatments will continue for four more months. The shock value of telling strangers both our sons have unrelated cancers has not gotten old.

The Sleepless One has reverted to waking and hitting his head, keeping us all awake. I have taken to sleeping in his room once more. It resembles sleeping alongside a drunk octopus made of elbows.

The newest resident has begun stealing food from the older two. This is a concern, as we try to keep the oldest eating as much as possible. His diet consist of foods that horrify most mothers- filled with empty calories, high fat content and preservatives. When cancer comes, all the rules we knew are reversed. His outbursts are frequent and unpredictable. Conditions are unstable.

Music continues to soothe all the beasts that inhabit this area. It momentarily distracts them long enough for meal preparation, filing paperwork, and brushing teeth.

We are enjoying the sun and visitors in this relaxed summer sentence. When the winter comes, solitary confinement will continue. In preparation, there are many meetings and doctor’s appointments that must take place. All reports have been positive thus far, but supplies and endurance are draining.

Things are both excellent and dismal, intertwined. I will attempt to give examples that can be understood. It is much like dancing at the best party one could attend, while nursing a broken leg. Outings are much like when a gluten intolerant person eats bread– we will push through and enjoy the moments when possible, knowing it will be exhausting and painful.

I would continue, but large crashes and the sound of spilling Legos has just echoed across the floor. “Mom! Something’s happened…” has just been yelled. I must clean up before the youngest tries to break the previous record on attempts to eat choking hazards.

Pray for us and come quickly. God is near, but the “still small voice” is being drowned out by crying and wailing.

Pressing on,

The Warden Mother