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.

 

 

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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.

 

 

 

Day 1: The Alien Abduction

So it begins…

First, thank you to my science teachers. I actually do need to know about radiation, photons, protons, etc. A special honorable mention to Mrs. Misage; I can figure out the trajectory of vomit or a child falling. I know the speed of descent is 9.86 m/s squared.

Jonathan woke up shortly before it was time to leave for the hospital, so not eating didn’t bother him. Putting the numbing cream and clear dressing over the port caused some concern, but Jonathan took a deep breath and bravely let us put it on. The cite was nice and numb by the time they arrived and needed to sedate him. He fell asleep without a problem, which allowed the nurses to access his port and leave the needle and cap exposed. It will be exposed and covered with a dressing all week so that he doesn’t need a new needle poke each day.

Honestly, the poor kid is going through something like a B movie alien abduction. He is taken to a new place, lulled into a sense of security. He is drugged and lifted onto a silver metal table.  Adults in green scrubs and masks lean over him and give him medicine. The world blurs until he falls asleep. When he wakes up he has a new piece of plastic sticking out of his chest.  He wakes up disoriented and confused.  He then sips on apple juice until he can walk again and is told everything is fine. Everything happened in his head. Yikes.

He returned home groggy and played with his new Legos. He was happy for about an hour and even agreed to eat grilled cheese.  Then… well…

Shooting protons into brain tissue isn’t a great feeling. The next hour was very messy. Bless him, he made it to the bathroom.

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Presently he is on the couch complaining of a headache with brief interruptions to sprint to the restroom. Otherwise we are snuggling and he is generally pitiful. He is putting on a brave front but it is quite sad to see.

Our primary concern from the side effects is the lack of eating. Jonathan is a pretty skinny boy already, but weight loss is a problem if he can’t eat until after sedation and then feels too sick to eat or can’t keep it down.

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Meanwhile, my amazing husband put the infant car seat in the van for me… just not secured in the seat. When I made a quick milk run and opened the van doors with groceries I had a tiny cardiac arrest.

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William has been extremely fond of kissing the baby, making it dance and helping it eat.

willandbabyThank goodness for big brother training– the initial sibling rivalry reigned in our house. When we brought William home and presented him to Jonathan, Jonathan ran over to a black bean-bag and threw himself down on it most dramatically, wailing, “Noooo!” That about summed up the next two years.

For now we count our many, MANY blessings. Y’all are listed among them. Thank you for the encouragement and checking in.

For now, we endure and keep going. It’s what the “aliens” want.