Lights of Christmas-Passed

Cancer-free. Remission. Completed treatment.

Memories, pictures, blog posts, a stack of hospital bills, several white scars and a bald head were the proof that remained. William’s leukemia was gone.

There was very little time to celebrate. We had only 48 hours to say goodbye to our friends and home of nearly three years.  Nine days after the plastic tubing was removed from above William’s heart, the moving van took all we owned and drove it away to a chance to begin again.

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I couldn’t fully explain what we had just been through to the new friends and neighbors but they were wonderful and embraced us. The new pre-school was wonderful and slowly we tried our hand at “Normal”. I went outside in the summer and warm fall weather as much as possible after being in one artificially lit room for 6 months. I longed to feel sunlight and to see William rediscover grass and dirt. I pulled curtains back to allow light in.

I made a friend there who became my right arm and my Person. It turned darker earlier and the toddlers became very ill. Snow locked us inside for a month. I learned that significant trauma from her past and the demon called Anxiety caused her to fight a valiant fight. Most days she kicked it in the teeth. She named it The Dark Place. It sounded like a place I had seen in a dream or in pictures–familiar but far off. We fought together and I tried to shine a light for both of us.

Then night came. My comfortable bed inside a darkened room without the blue glowing lights and noise from pumps was a perfect place to rest. For some reason, I’d wake at 9pm. Then 11:00. Then 2:00. Then 4:00.  I realized William was waking as well. These were the times for pump changes and blood draws. I’d wake up anxious and exhausted, which felt familiar and welcoming somehow.  Snow, Strep throat, appointments, blood draws, my husband’s absence for work, and the usual struggles with toddlers and disabilities mounted. I tried to fight through it, as effectively as a $1 flashlight compared to the sun. This supposed to be the easier time we had waited for and so much was going right.

Then I had a doctor check my counts and levels. My stress hormones and chemicals were pumping at a trauma or deployment induced level. A time of medication and the help of friends and wise, older women brought me back. My body and my heart healed.  The year was hard, but I remember it with such joy and blessings as well. The most beautiful time was also the hardest– Christmas.  Looking back now, that time of healing and grappling with God after the trauma of cancer care-giving was as valuable as the time during treatment.

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Light still shines when other light is around, but light surrounded by darkness seems to shine brighter. Lights in the darkness become beacons. 

It is Christmas time again. Strands of lights are everywhere, visible and ready. At night the lights receive power and joined together they shine, illuminating the night. This is what is happening in our home as well. The Christmas tree’s light shines a peaceful glow– enough that I can safely walk the floor with a baby in a darkened room. The bright, joyful moments are here, strung together and held up so that we may be filled with delight and awe.

This is the key to Christmas. Christmas is FULL of Darkness. Tidings of Peace, Great Joy, childlike joy, and all things bright are set against a backdrop of with stress, planning, travel, illness, death, loneliness, strife– and that is the point of Christmas. 

On the day of Christ’s birth, the brightest star ever seen on Earth pointed the way toward God With Us. God had been silent for 400 years, his people were occupied and mistreated by Romans, Herod was a tyrant and it was tax season. The world was dark when the Light came.

The problem comes when MANY lights are shining. When the joys of health, financial stability, beautiful families, acclaim, likes and followers, honors, and promotions are abundant, these bright points can distract. They light up life and make it less necessary to keep eyes fixed on the one LIGHT; God in his righteousness, goodness and faithful provision. When Darkness comes, the Light shines and demands our attention.

The HARD things that make us despair and weep make us long for a Savior. This was precisely the case in Bethlehem when a star pointed to the Light of the World that came to testify to the Truth.

Don’t be afraid of the Dark. We all face it. Find the Light and be a light to others that points to God. Don’t just seek and find Him– walk with Him and keep your eyes on Him. That is our secret to Christmas with Cancer. The Light shines brighter and much more clearly.

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The 4:12 Paradox

It is 4:12 am and I sit on the thick floor rug clinging to my final shred of consciousness.  Chairs and comfortable seating surround me and yet I am relegated to sit beneath the desk so my computer can charge. Somehow I forgot to plug it in before the evening festivities of dishes, preparing a school lunch, clearing the kitchen counter for the 4,323 time this weekend, and changing diapers.

It all sat impatiently so we could read passages about Advent and ‘light’ the battery operated candle in the wreath…because fire-lit candles would usher in the Fire Department as well as Baby Jesus.

I sit in a paradox. I live in a state of abundant depletion.  One day has ended and another began without a break. There isn’t enough for the next day, and yet there was yesterday and the day before.

I have been awake every hour for 24 hours, since 5:51 am yesterday. A ‘Supermoon” hangs in the dark sky, which has changed only slightly since 1:43, 2:56, and 3:51.  I made the Unpardonable Gastric Nursing Mistake of eating something healthy while nursing a newborn.   I say healthy, vegetable filled soup… my daughter cries Murder Most Foul. Well, diapers, anyway. Drinking extra water and eating healthy has caused an all-nighter where last night held a three hour stretch of sleep.With each hourly feeding and the 8 diaper changes tonight brought, she stares at me knowing what I have done to her.

Good In, Good Out they say. Lies, Friends. Doesn’t she KNOW that making the good choices is supposed to bring good results? Isn’t this the formula for parenting?  (Now we shall break for uproarious laughter at such ignorance.)

My husband and I asked God for children who would live for His glory and spread a testimony. We prayed to truly KNOW the Father and live submitting to the Lord. We wanted to live growing in the Word and to be set apart. One would imagine a beautiful Christmas card with smiles, a Bible Study in a comfortable home, regular date nights as prescribed by every marriage expert, and heart-connecting discipline. God said, “Nope.”

God said yes to children with disabilities, struggles and delays. He said yes to BOTH sons having cancer. God said yes to proving his Presence and powerful proof of his provision and goodness. Our normal is another’s Worst Case Scenario– and we consider ourselves abundantly favored. Great adventures and decisive battles are noted for hardship. It brings out the best and the Holy in us.

We may want to be molded into Christlike form… gently. That isn’t how the Most Holy and Powerful God works. Christ- God incarnate and Most Beloved– was a Suffering Servant who obeyed even to death on a Cross. To become like Him we will also be crushed and must sacrifice our will for a greater one.

So again I sit, now having been interrupted twice to change diapers. Mothering three children while balancing a 5 year old in total rebellion and a 6 year old in radiation is crushing me- and yet we have more than we need both tangibly and spiritually. Our lives don’t make sense. How can we expect our faith to make sense to those watching?

We praise in the paradox. We die to sin so we may live. We turn right to go left, as Lightning McQueen says in Cars. We break down together so our marriage may be whole. I eat carbs and cookies rather than broccoli for the good of my daughter’s tummy and sleep habits. It doesn’t make sense.  After all, Faith isn’t about making sense.

 

Book: River, you don’t fix the Bible.
River: It’s broken. It doesn’t make sense.
Book: It’s not about making sense. It’s about believing in something. And letting that belief be real enough to change your life. It’s about faith. You don’t fix faith, River. It fixes you.

-Firefly, Jaynestown

 

The overwhelmed feeling like I am drowning is so familiar that it is almost comforting. Perhaps that is because I was raised in church that baptizes by full immersion. My baptism was one of the church’s fastest because Pastor Long’s fishing waders sprung a leak. Really.

On paper, our family experience is… abundant. 6 deployments and 9 moves in 11 years and 7 years bringing Autism, Down’s Syndrome, two forms of cancer and a newborn. As resilient and capable as we are, we have learned that we absolutely need help. A LOT of it.

This was 5 am. Everyone is sleeping in two hour spurts…just not the same two hour spurts.

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I’m finally humbled enough to say more than “Yes, THANK YOU!” to the abundant and amazing generosity y’all have shown us. I am thankful to the point of hormonal tears daily.  After many, many requests, I have made a list of tangible ways you can help us meet our most urgent needs.

We are called to bear one another’s burdens and to love one another. I do not want to prevent someone from being a blessing or using a gift because of my pride. Dang it. This humility thing is hard.

First, an amazing Aggie sister who also has an inspirational story has forced me into creating a fundraising page.  As a mother of 5 displaced in a trailer until FEMA can evaluate the damage Harvey caused on their Houston home-and rocking it despite sick kids- she can absolutely kick my rear. If you want a Texan woman to do something, tell her she can’t. She’ll prove you wrong. So, here is the page she made.

If you want to donate, you can do so here:

https://www.youcaring.com/joshandkaitlinerkkila-1031168

 

FLIGHTS: The funds will go toward plane tickets for family members to fly from Texas each month of inpatient chemotherapy. Newborns and siblings can’t stay overnight in a hospital, after all. Family members are more helpful that nurses or respite care. Jonathan is diagnosed as on the autism spectrum, so new transitions and new sensory issues such as illness and pain we can expect as side effects are daunting.

 

Funds for cleanings and cleaning offers (sans kids!) Germs and illnesses are very serious threats. Jonathan will have a weakened immune system during treatment, so even mild sniffles can be serious. When William caught C Diff during treatment he became so ill that I feared he would not live. Every day when William gets home from school he is immediately showered and his clothes are changed and washed. Pre-school is a disease magnet after all. The cleaners, Clorox wipes, etc. are constant companions. Try as I might, I cannot keep up with daily deep-cleaning with Wild-Man Will, nursing and Jonathan being ill. I admit, I am not Pintrest worthy.

MEALS. Food, glorious food. Jonathan consistently becomes exhausted and ill around 4-5pm. Making dinner isn’t easy. The Mothers of Preschoolers set up a Meal Baby train that has options to sign up for a meal or to send a gift card. This has been SO helpful.

**If you want to be added to the list that can view and sign up for meals, let me know and I will add your e-mail. In the near future, months beyond December will be added.**

I can’t grocery shop and expose Jonathan to potential illnesses to get groceries, so we use pick-up and deliveries in the area. Wegnman’s and Amazon are the two services we use.

I am so thankful for the packages and gifts. The joy you bring to Jonathan delights me to see. Please understand that I am PAINED to ask for help, but I have learned that God provides mightily through his people. You have been the hands and feet of Christ to us. Thank you for loving us and caring for us. We love y’all.

Jesus Wept-and I am His Follower

By now I could identify the sound in my sleep– mostly because nothing makes a mother fly out of bed in panic faster than the sound of a child about to be sick.

For an hour, like every day around 3:00 pm, I watched Jonathan spiral from a happy and playful 6 year old into the classic symptoms of a migraine. This is indicative of a virus running through his body, amplified by the radiation.

The beautiful moment of comforting my whimpering son, singing and holding my hand on his forehead was shattered by the well-traveled sprint to the bathroom. He looks like a man, bent over the toilet and holding back his beloved tie. The light glares starkly on the red scar dominating his now bald head. He breathes heavily and turns to me, reaching for a hug and saying in his child-like voice, “I’m so sorry, Momma.”

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We go back to the couch and I rest with him; his beloved sister Elizabeth Joy arrived 6 days ago exactly as he predicted. I can hold him close to my body now, which I missed desperately when he suffered. I sing to him as he cries and holds my neck. “I’m so sad. It hurts. My brain hurts. It is broken.” Blame the hormones, the nursing, the exhaustion… the tears start and I can’t stop. My eldest and youngest are both crying for me now. My mother brings my redheaded daughter and says, “Hold your baby” with the force of a mother who wants her child to stop hurting.

I was holding my baby. Now I was holding both. I held his head  with one hand and nursed her with the other.

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Tears. Gagging. Running. Retching. Sobbing.

I can’t get up to him fast enough. My mother runs to her grandson, comforting him masterfully as I stand back, helpless, and yet holding onto Joy. My Redheaded Queen of Joy.

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I can’t do it. I can’t do the minimum for each of my children. My mother and father are here and we are still overwhelmed by the care for each child. Each one is sequestered to a different floor to be protected from the others. Jonathan has his den in the downstairs next to the laundry that washes roughly 4-6 loads daily.  Elizabeth has the middle floor near the kitchen where we sleep on the comfy couch.

 

Then there is William the Conqueror. He is not forgotten, despite being a middle child now. Only two years ago it was HIM in the hospital bed fighting cancer. His immune system struggles. This morning I left my daughter at home and wrestled my rash-covered son in the doctor’s office and pharmacy to treat him for a double ear infection, acute tonsillitis and a contagious skin infection.

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We arrived home, took medication and quarantined him in his room for 8 hours, showering and Lysol-bathing everything at each entry or handing off of supplies to my father, his Warden-Caregiver.

No Superwoman can handle this. The suffering is excruciating. However, God knows exactly what it feels like to watch his beloved Son suffer as part of a Good Master Plan.

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In November 2012 I sat on this couch struggling to nurse William due to this low tone around his mouth. It was 2:00am, quiet and dark. My voice caught as I sang to him, “My God is so big, so awesome and mighty! There’s nothing my God cannot do…”  The tears flowed. Many of you have asked what my favorite verse or verses are from God’s Holy Word. I often answer with sass; “Jesus Wept.”

My friends, this is my favorite verse right now. The Almighty, the Savior, the Word, the Holy Warrior who will lay down the most fierce and deadly butt-whooping of all time from a white horse– he walked and wept.

 

When we couldn’t fix it all– when HE in His humanity couldn’t dismiss it all or heal it all–  He obeyed the Father at all costs. This fully God-fully human, beloved by the Supreme God, did the most difficult thing ever done on Earth and then Atoned for us.He stands over us as we cry, as we display our brokenness and our sickness, and as we suffer. He cleanses better than Clorox.

One Day.

One day this will be over. One day Jesus will come in power and will judge all on the Earth. I want to be judged well for how I obeyed the Lord and sought the Light in Dark Places. Our biggest problem is not cancer. It isn’t childcare, meals, transportation, sleep deprivation, or disease.

It is sin. We are prideful, angry, mean-spirited, sharp-tongued and fail to give God glory every time. This is a process of becoming more holy. We are not perfect, but we will aim for perfection– like a child with cancer aims for the toilet.  After all, Jesus wept and Jesus is here.

 

 

Losing Our Hair but Not Our Minds

The doctor’s expression mixed disbelief with doubt. “You actually want us to shave his whole head?” I answered with a smile. “Yes. If you shave part of it for the incision and stitches, it will be uneven and it will be terrible to cut around in a few weeks.”

The doctor shrugged with a smile. “Most mothers panic about their kids going bald.  Then again, I guess you’ve done all this before. We can shave it. He will most likely lose it all in a few weeks if he gets radiation though.”

The third week of radiation treatments often bring side effects of hair loss, skin rashes and discoloration, and ‘discomfort’.  We learned with William that hair often falls out in patches in a way that is itchy and most unattractive. Eventually, William just needed a buzzed “Buddy Cut” from Dad. He was a smooth headed 2 year old by the following week.

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Jonathan’s head is still sensitive from his new scar and his hair falling out and into his collar will make him most displeased, so we decided to bite the bullet early. With a new fuzzy hat in tow that matches his favorite red and black pattern, we made a night of it.

Ever the leader of our family and an example for our sons, my husband got the clippers out and let Jonathan give his first ‘buddy cut’ as it is called in the military.

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Then Jonathan’s turn.

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However, William got jealous. He loves having buzzed hair so that people will rub his head.

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I too, cut about 6 inches of hair off.

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Last but not least, without the permission or blessing of my mother, my amazing father joined in. He has been here helping for a month, which has probably kept me from pre-term labor. When Jonathan woke from sedation last time he hugged me and then promptly asked for Pop. Three generations of cancer support. (He did buy matching hats for all the boys.)

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We’ve been honored by several friends who have shaved their heads in William’s honor. A shaved head is quite a symbol. Now known as a side effect for cancer treatments, it is an indicator that the body may not be as healthy as it appears externally.

 

Hair is a big deal. Hair-care is a billion dollar industry and a way people represent themselves. The bible mentions hair 88 times in various contexts, from identifying and treating contagious diseases to honoring gray hair that comes with the passing of time. I am convinced the ER trips alone turned my mother’s auburn hair into her current gorgeous white. She taught me this verse early on:

Gray hair is a crown of glory;

it is gained in a righteous life. Proverbs 16:31

Gray hair and natural baldness have their mention, but there is an entirely different context for grief-induced baldness. It was a sign of great lament or capture to have one’s head shaved.  People would tear their clothes, shave their heads or sprinkle ashes on their hair, and enter a state of severe, profound grief. The wailing was accompanied with grief that God had forsaken them, which is often how it feels when grief is  encompassing. There are dozens of such verses.

“‘Cut off your hair and cast it away;

raise a lamentation on the bare heights,

for the LORD has rejected and forsaken

the generation of his wrath.’ Jeremiah 7:29

Grief, struggle, depression and mourning are all evidenced both inwardly and outwardly. Right now some of our struggles and trials are evident physically. I am about to give birth and it is incredibly evident by my physical appearance. We all look a bit weathered and exhausted from bags under our eyes but also the intensity you will see from eye contact with any of us. Fighting for one’s life will do that, but fighting with one’s faith is eternally significant.

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In this family our struggles and our victories are shared across generations.  Both of my sons will bear similar white scars over their hearts that are unique from the rest of the world.

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Yes, we are struggling but we are sustained. Our glory is in obeying the Lord and learning to suffer well, not in health and great hair. If we teach our children, we must show them.

Make yourselves bald and cut off your hair,

for the children of your delight; Micah 1:16 a

The glorified body is coming. I can’t wait.

5 Years Parenting in the French Revolution: William’s Birthday

Time may be the strangest of constructs. I am anticipating my third childbirth and spend each day waiting on the schedule for Jonathan’s radiation treatment. It is a strange time and yet perfectly fitting for an event worth celebrating– the fifth birthday of William.

Extreme emotions characterized the pregnancy; surprise, anxiety, sorrow, joy, frustration and hope. He came in quite a dramatic and humorous fashion, which is another blog altogether. Looking back, the events of his life make sense in a wild historical rendering, but at the time the wild torrent of shock mixed with longing for mundane make for a glorious story.

Raising William has been the best of times and the worst of times– and I’ve lost my head on more than one occasion. William is not defined by Down’s Syndrome, as much as it is intertwined with his person. It is a backdrop that cannot be dismissed, like living during the French Revolution.  If that isn’t parenting, I don’t know what it is.

“It was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity.”

“It was the season of Light: it was the season of Darkness, it was the spring of hope, it was the winter of despair.”

 

“We had everything before us, we had nothing before us, we were all going direct to Heaven, we were all going direct the other way — in short, the period was so far like the present period. “- A Tale of Two Cities, Charles Dickens

When one must live with a backdrop that is marked by suffering, danger, sorrow or pain, one lives differently- perhaps more acutely aware of the scope, breadth and significance of it all. Raising William has forced me to closely scrutinize the doctrines of sovereignty and suffering, to look to the eternal, to change my definitions of success, and to navigate legislature and civil rights. He taught me to duck an incredible left-handed throw, to value survival and the value of obedience when the the orders don’t make sense.

Raising William forced me to grapple with the stereotypes of others, to raise and walk out my sanctity of life choice, to make end of life decisions and write a will for a newborn,  to adjust my expectations to balance challenges and hope, and to have a soft heart with tough skin. We are more obedient Christ followers, more merciful humans, more resilient fighters, more joyful parents, and cancer veterans because of him. Here is to William and all those who have been changed because he is in the world.

I Love It When A Metaphor Comes Together

I rushed into the PICU hospital room, eager to see Jonathan. He was asleep after a sedated MRI, curled up in the hospital bed. My husband rose from the couch and whispered orders about the night shift. When the night shift nurse came in he apologized to her, saying, “I’m sorry the A-Team has to leave.  The B team will be here tonight.” I proceeded to give him the side-eye. “Enjoy your ride home, Mr. T.”

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Now, three weeks later, I waited for news from my husband to tell me how the first radiation treatment went. After assuring me that it went well and they would be heading home, he added something superb.

“Love,
I had time to think while Jonathan was in his radiation treatment. It may be because we have been watching too many A Team reruns at night or this could just be really, really accurate.

The way I see it, we are the A team. Let me explain:

1. We drive a van…just like the A team

2. Jonathan is BA Baracus (Mr. T). He has a bad attitude at times, he loves to wear things around his neck, he glares at anyone who wants him to do anything he doesn’t want to do. Most importantly, we have to sedate him to get him to do anything. Case in point: “When I get scared I get mean, and you don’t ever want to see me mean”- The episode in season 1 where he gets on a plane without sedation.

3. William is Face. He smiles at the ladies and gets his way, pretty much all the time through manipulation. He smiles his way through school, therapy, except the time when he is not with us.When he cooperates he does well but most of the time he is checking out the ladies.

4. You are Amy. You spend a lot of time cleaning-up after the craziness that is our little Team creates. She randomly saves the day a lot and tolerates military jargon on occasion. She is also the only lady on the A Team; don’t get bogged down in the details.

5. The determining factor will be Elizabeth. If she turns-out to be like Howling Mad Murdoch, we will have some trouble on our hands. She will probably holler most of the time in a language only she understands. If she turns out to be more like Amy, I will resubmit this analogy to you with you as Murdoch and accept some time in the doghouse for likening you to a mental patient.

Glorious.  There was just one issue… what about him?

Babe,

That makes you Hannibal. You are always calm, you usually make plans and then improvise, and we trust you. While the rest of us are reeling, wide-eyed, you are usually smiling and telling us ,” See? I told you everything would work out.”

That, Ladies and Gentlemen, is how we keep our sense of humor and go through complete ridiculousness.

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We love it when a plan comes together.