This Isn’t Us

Aside from the squeaky wheel and the tall, blue barriers that obstruct the view, the hospital bed looks normal. Four men in yellow and navy uniform roll it down the hallway silently. It wouldn’t be noticeable if it hadn’t been the fourth time that month.

The next morning, no one turned on the hallway lights. The nurses were quieter. We parents who usually checked in on how the night went had all retreated into our rooms. No matter- we had no words to say. We knew that the winter and extra illnesses would bring this risk, but knowing it was coming didn’t make it better.

That made eight. Eight children had died within 30 days. Four on my floor. I knew two of them.

Needing a break, I flipped open my trusty PC and scrolled to Facebook. The next 27 posts read like the book of Lamentations. I desperately tried to decipher what had happened.

“I’m devastated. I can’t stop crying.”

“If only the doctor had been better!”

“It won’t be the same now. That’s it. I’m done.”

“Nooo! Why? Why did he have to die?!
 McDreamy had died. The beloved Grey’s Anatomy character Derek Shepherd had been killed in a dramatic episode.

I stared, numb and blank. In my trauma, it was hard to separate the very real emotions over a fictional character from the EXACT SAME comments said in the hallway.

Fictional deaths are supposed to render us emotional and blubbering. It helps us deal with the sting of the inevitable. Old Yeller, Bambi’s Mom, half the Grey’s Anatomy cast, whoever died on the Walking Dead, Forrest Gump’s Jenny… most of us had a death that brought our heart to death’s door without bringing our bodies. That’s okay. It’s good, even.

The solidarity of those grieving over these characters, especially with the advent of all these highly dramatic shows, is an interesting phenomenon.

The death of fictional Jack Pearson has viewers of This Is Us in an emotional limbo. He is both dead and in the process of dying; a full season of episodes has ensured this heart-wrench. ”

It’s just an absolute soul-crushing event. Once you figure out the moment where it’s going to happen, you may get some hope and then it’s all going to go away. I think the best thing I can say-or the worst thing I can say- is it’s going to be f-ing painful.”  -Milo Ventimiglia, Entertainment Weekly.

The writers have successfully brought out the Deep Hurts through the Pearsons. Adoption, fostering, racial prejudices, parenting, adjusting expectations in marriage, miscarriage, alcoholism, mental illnesses, weight loss and image problems, secrecy, not dealing with family issues– it’s all there. Thousands of comments afterward show that they strike a nerve with people who are dealing with those same issues. It’s a kind of therapy more than entertainment, I believe. The collective grieving is actually helpful.

More grown men are admitting to crying at This Is Us than the Superbowl and World Series combined.

If everyone took every trauma, injustice, horrible illness and death to heart every moment, we’d all go crazy. It isn’t healthy. We all walk through the Valley of the Shadow of Death. If you are like us, you have a time-share there.

Now that I am out of the season of William’s cancer, I can realize that I was in a pit of trauma. It was typical to want to scream “It’s not real! My kid could die because someone brought illness into this hospital and I’ve never seen anything like this, even during our worst deployment! Get a GRIP!” It felt like a “first world problem” version of grief.

It took a few weeks, but I realized most people just weren’t in my valley. These were friends who would be much more devastated by the death of my very real child than fictional McDreamy. These people would be at my house faster than people would bring back Jack.

Grief isn’t an either/or. It’s a both/and. You can grieve Jack and be heartbroken for Jonathan at the same time.  Right now…I can’t.

By all means, watch it.  Post, tweet, and grieve however you must. This is not intended to make you feel guilty or to ask you to refrain. I can’t be bitter that the world keeps going.  It’s one of those things I learned from having a kid with cancer the first time.

I won’t be watching This Is Us. I’ll even be off of the internet for a day or two afterward while everyone recovers. My emotional energy is tapped out. The “soul crushing” pain can wait until making it through another day doesn’t feel like a major accomplishment.

All I’ll ask is that you look around for those in your sphere who are experiencing grief they wish they could turn off like a television. Love them and just sit and cry with them as if they just lost a Pearson. Maybe Milo’s advice on dealing with sorrow and death is good, after all.

 

 

 

My 80 New Pen Pals

Today has been a 2/3 day, so I will be quick about this. Oh, a 2/3 day? It’s when only 2/3 plates can spin successfully at once. Overall, we are doing better than a 66.66%, however. School and potty-training went well, the new grocery pick-up at Wal-Mart is LIFE ALTERING, and I showered, dressed in real clothes AND wore earrings today. I’m at a solid 90%…kinda. We’ll call the average at 81% today. Math was never my strong suit.

This blog is simply to declare that I am one of the most incredibly blessed women of all time, and not in a #blessed way. After yesterday’s blog post about needing an 80 Year Old Pen Pal, I received numerous messages, most of which began, “I’m not 80 but…”

In short, I now have 80 pen pals, which is much better than one 80 year old one.  Women age 29 (a REAL 29, not the 29 I keep turning) all the way to actually 80 (and proudly wearing leopard print shoes) are present and connected. We are doing this life thing, y’all.  These are women who are in one another’s lives, homes and communities.

We are taking the storms and poop of life, declaring them to be fertilizer and making some gorgeous, thriving gardens. The older are teaching the younger, the younger are listening and treasuring the mature and all the babies are being loved.  This is Church. This is family. This is how we survive dinner to bedtime.

As we lament the loss of community, playing outside until dark, disconnection and social media issues, we are lifting up each other. In short, we are writing our stories and coloring the stories of others. We’re obeying the call to love one another, to bear each other’s burdens, and to live rightly before God.

Ask and ye shall receive. Y’all are 3/3.

I Need An 80 Year Old Pen Pal

It may be the sleep deprivation. It may be that I am just outnumbered and have lost my ability to stand up against peer pressure. I have been worn down. When women I love insist I should write a book- “Not right now, but when things calm down”–(Give me a moment to laugh until I snort)– I started to contemplate it.  There are many obstacles of course, but there is one PAINFULLY obvious setback to literary success. I’m SURE you’ve thought of it.

I can’t write a book- even a life memoir-  until I have an older Pen Pal.

I know. OBVIOUS, logical conclusion.

To survive this stage of Cancer Round Deux, I need a pen pal. I’m surviving off of the support of many amazing friends my age. The support is felt daily and goodness, we need you people like oxygen and chocolate.  However, there is a new need.

Y’all. I don’t know what I’m doing. I honestly and truly don’t expect things to EVER calm down. This was SUPPOSED to be the calm year.  Two years ago I told my friend Jen that I honestly don’t expect things to be wildly easier once Will’s cancer treatment ended. I expected it to be training for something harder. I was right. DANG IT. Dang, drattity drat drat.

I looked through my recent call list last week in search for a hospital number. I realized that most of my texts were from women my age and life stage. However, the phone calls, e-mails and Facebook messages were mostly from women who are my mother’s age. These are women who knew me as a teenager. They saw me in awkward stages and gave me graduation gifts. They believed in me and served spaghetti with me at Teen Community Bible Study every Tuesday. One called me monthly as her husband and my son underwent the same chemotherapy. I NEED THESE WOMEN.

I want to ask the 70 year olds how to care-give with a grateful heart when I feel like I can’t go on another day. I need their recipes for that pork tenderloin, strawberry jam, brisket and those addictive cookies. I need to ask the STUNNING women how to look so gorgeous at 80 when I regularly forget to moisturize my neck. I need to ask these women how to cope with people they love forgetting who they are so I can have a path to follow if/when Alzheimer’s symptoms begin in William, as they do for over 40% of adults with Down’s Syndrome. I need to ask my mother in law how to raise a strong Man of God when I’m not sure my five year old will survive if he throws his cup one.more.time.

Look, it is lovely to read a book on a successful, Christ honoring marriage but Y’ALL. Women who have been married for longer than I’ve been alive get down in the nitty gritty and teach you how to love your husband when the laundry may bury you alive.  These women are all around us, especially in our churches. I desperately want to be in Sunday School with them rather than with people ‘my own age’ who are ‘in a similar walk of life’. NO! I want to be with women who have LIVED and can point out the pitfalls. I want to cry with them and remind them that their pain wasn’t wasted because they can speak into my life. Older women are GEMS.

I need training. I need these women to hold my baby and kick me in the rear when I need it. I need them to refuse the invitation to my pity party, to eat my cake, and then circle back for me once I’ve come to my senses. The great news is I HAVE these women because they were around me as I lived. I didn’t have to seek them out because they were already there.

In this ongoing saga I call ‘my life’ with shocking events I like to call “Tuesday”, I’m busy reading through the life stories of these amazing women who are walking with me and giving me something to strive toward. If I can learn to be as wise, funny, compassionate, trustworthy, patient and crown-rocking as these warrior-women, maybe– maybe– God will lead me toward book writing.

Until then, find the women a generation before or behind you and become part of their stories.

 

 

 

 

The Ugly Side of Suffering

 

Suffering brings out my worst, leaves me alone in a room with it and locks the door. Cancer makes me ugly.  Presently, I am horrified by my behavior. I was ugly to…my mother. Yes, “Your Momma Said You’re Ugly.”

My mother was offering wisdom and money in a moment I was utterly unprepared for— and I snapped at her with a death glare. I didn’t realize I had done it. Who does that?!!! She took time off of work to fly here. She has done hours of housework and errands, gotten up multiple times a night and missed  events at home because her child was suffering and I acted like an ungrateful, spoiled brat.No, it is NOT understandable to be impatient and lose your ever loving mind and use the excuse of stress and both my sons enduring  cancer. That’s what Satan wants you to think.

My young kids often behave that way as I supply wisdom and green veggies. Frankly, it hacks me off. I should know better.  Like a good mother, she did NOT let it ride. I apologized and she forgave me.

 

She modeled grace and beauty in the face of something ugly. Then she fixed it. She helped me clean up my act and regroup. She gave me an hour to go from this…

to this.

(Me: Okay! Hair is clean! Mom: Go dry it nicely. Me: My face is washed! Mom: Lotion. Don’t forget your neck.  )

 

I can clean up and put on a brave face, but no amount of any self-care or product is going to fix the fact that what is on the inside is always the same. We can cover up ugly with a lot to disguise it, but it remains. Frankly, it doesn’t take more than 18 hours to return to my natural state. It can get “ugly as sin”.

Trials and challenges are not an excuse or cause. They simply strip away the good I have to offer. When patience from sleep is gone, comfort of ease is lacking and I am lonely- the true self shows.  There is no barrier or buffer to hold my sharp tongue and selfishness at bay. It is a hard task to keep purging the ugliness and sin that is revealed. It is hard work to destroy the sin within me.

Presently, all the fear, sadness, frustration, and hurt is coming out as anger. “In your anger, do not sin” isn’t easy on 3 hours of sleep across three months.

For every person with an “inspirational success story” from a major crisis, there are as   many who are bitter, angry and broken. They become defined by it.   You can’t pick yourself up by the bootstraps forever. There is no ‘fake it until you make it” with Jesus.  I need Jesus to save us and the Holy Spirit to help us put sin to death daily, even when it rares its ugly head. When suffering people have increased unity with Christ, they see greater sin in themselves.

To become beautiful we must be cleaned and put on Christ. To quote Dolly Parton in Steel Magnolias, “It takes some effort to look like this!” Effort indeed.

The skill that one must master during this Great Clash is the art of the apology.  Sadly, I’ve had a LOT of practice…especially with my kids.

Step 1: Never put a but in your apology. An apology with an excuse is a defense.

Step 2: Ask for FORGIVENESS.  I’m sorry is not enough.”I’m sorry” and “It’s okay” doesn’t fly in this house. It’s “Please forgive me” and “I forgive you”.

Step 3: As VeggieTales classic “King George and the Ducky” teaches us:

“Ask God to forgive you. Ask Thomas to forgive you…and then make it right.”

Make changes. Ask for help. Serve the one you offended. Clean the brother’s toys. Help with the chores when you neglected someone all day. Speak kindly after a harsh word. Confess to others who will help you become more holy, not tell you why you were right. Wronging someone else IS NOT right.

Then repeat, repeat, repeat.

Makeover shows are more entertaining when the transformation is more dramatic. The wonderful thing is that beauty stands out against a backdrop of ugliness. Thank the Lord for a perfectly exquisite Savior who makes us beautiful by making us look like Him. After all, people who look like Jesus are darn good-looking.

 

Chemo Day 1: An Ode to Sarah

On this first day of Jonathan receiving chemotherapy, I am responsible for the home-front while my husband takes the hospital shift. He has to drive, park, wait, prepare a crying and non-compliant child for port access, keep the IV pole close for the infusion, and feed and entertain Jonathan. Then he must transfer to a room and keep watch all night as the rough things begin. He has to keep the IV line clear and replace it when pulled, help Jonathan make it to the bathroom on time, and sleep with one eye open on a short, hard, plastic bed.

I know, because with William it was my job- I became good at it. Now I have to turn that over and switch places.

I must step back from it all and wait to hear what happened.  If any woman understands that, I imagine it is Sarah, Abraham’s wife. She is one complicated and amazing woman- an ideal character for an amazing play. However, in one of the greatest scenes, our Best Supporting Actress remains silent and unseen. Many great jokes, sermons and commentaries surround one of the most profound tests ever given to parents who serve God.

I have read this slowly, picturing the scene over and over. Curtain, please!

Some time later God tested Abraham. He said to him, “Abraham!”“Here I am,” he replied. Then God said, “Take your son, your only son, whom you love—Isaac—and go to the region of Moriah. Sacrifice him there as a burnt offering on a mountain I will show you.” Early the next morning Abraham got up and loaded his donkey. He took with him two of his servants and his son Isaac. When he had cut enough wood for the burnt offering, he set out for the place God had told him about....⁹ When they reached the place God had told him about, Abraham built an altar there and arranged the wood on it. He bound his son Isaac and laid him on the altar, on top of the wood. ¹⁰ Then he reached out his hand and took the knife to slay his son. ¹¹ But the angel of the Lord called out to him from heaven, “Abraham! Abraham!”“Here I am,” he replied.¹² “Do not lay a hand on the boy,” he said. “Do not do anything to him. Now I know that you fear God, because you have not withheld from me your son, your only son.”…

BUT THEN

¹⁵ The angel of the Lord called to Abraham from heaven a second time ¹⁶ and said, “I swear by myself, declares the Lord, that because you have done this and have not withheld your son, your only son, ¹⁷ I will surely bless you and make your descendants as numerous as the stars in the sky and as the sand on the seashore. Your descendants will take possession of the cities of their enemies, ¹⁸ and through your offspring^[b] all nations on earth will be blessed,^[c] because you have obeyed me.”

 

Let’s go off-stage. SURELY Abraham didn’t tell Sarah…right? If she had chosen to wait in obedience at home without protest I imagine it would have warranted a verse. Imagine that homecoming dinner table conversation. No marriage conference can handle that communication lapse. (Shudder) No WONDER Abraham went to Beersheba instead of heading home.¹⁹ Then Abraham returned to his servants, and they set off together for Beersheba. And Abraham stayed in Beersheba. See? The Bible is full of humor.

When Sarah finally heard what happened, knowing God had been faithful, I imagine Sarah clung to her Son of Promise. If she had sent her husband and her son away with provisions for six days knowing that Isaac may not return, I imagine she wrestled with The Difficult Things.

If God takes my son, is God still enough? If I am stripped bare from what God promised in this life, can I wait until Eternity to claim them without distrusting and becoming bitter? What if I fail God’s test for me?

Can I truly savor every moment I had with him and let that be enough? Why did God ask for my son?  How can I stop from wanting to control everything and watch him every moment?

I apologize to those who hate rhetorical questions. To me, these are NOT rhetorical questions. They were my constant companions and will continue to be until Jonathan is healed from cancer, one way or another.

It would be ideal to have Sarah’s example to follow, but the bible leaves it to the imagination. Dad gummit. I suppose it is for the best. Sarah isn’t the star. Abraham and Isaac aren’t the stars either. GOD is the star and this is HIS story of a sacrifice redeemed for something beyond comprehension.

That’s the point, after all. We must make Christ the star, no matter what cross we bear and what we sacrifice to receive what God has for us.

I will send my husband and my son up to the hospital over and over for a year. We will sacrifice each time- his school year with amazing teachers. Play-dates, vacations, leaving the house, nights together… but we gain promises and rewards far beyond what we see and can comprehend. Although our sacrifice and the way God will provide is very different, our God is unchanging. We can trust him, even when it knocks us flat, because God sacrificed his Son too.

Have faith.

What’s Happening A Week Before Chemo

Happy New Year! Most of us greeted 2018 with great joy, simply because 2017 is over. I can agree with that sentiment. Hooray to 2018! Except that many of my friends are mothers who are in the trenches of Strep, Flu, Stomach Viruses, Weird Rashes, Eczema, and travel plans gone awry. I’m friends with a lot of sickos, as it turns out. Thus, 2018 will be the Year of the Long Distance Relationship. As the primary care giver to a immune-compromised child and a newborn, I am living the life of Rapunzel. Therefore, most of my contact and communication with friends and family will be through technology. Be my pen-pal, won’t you?

We made it to 2018, which means three months of Cancer Part 2 are over. This was our month to ‘rest and recover’. Would every female who just performed the Great Christmas Show please join me in laughing?  Thank you. You’re so kind. Honestly, we are exhausted and struggling. It is a blessing and curse knowing what is coming next week.

As radiation finished and we carried Jonathan out with great elation, we were handed paperwork with a side effect warning. You know, the old familiar “What To Expect When Your 6 Year Old Completes Radiation at Christmas” chestnut. Less welcome than a re-gifted fruitcake, I assure you.

Christmas was STUPENDOUS. Not ONE of his favorite gifts came from his parents, by the way. Every gift that made the Top 10 was from one of YOU. He played with great elation for hours, which made them my favorite gifts as well.  You tried to give us a wonderful Christmas and y’all nailed it. Grandparents arrived Christmas morning. The kids were held, played with, adored and spoiled. Then we crashed, like everyone does. The tree was put away, the leftovers were eaten and we settled in. School and doctor routines were lost and the children went haywire. We stayed inside to avoid the rampant illnesses, taking turns attending church and sending the men out for groceries. We settled in to brace ourselves for 2018.

You asked, so I won’t sugarcoat it. 2018 is a lot like 2017…and 2015 and 2014. We are in the weeds. The following details are NOT to receive pity or suggestions. They are so you know how to pray for us.

The side effects are here in force. Jonathan realized everyone’s hair grew back and asked if Daddy would keep it shaved until his grew back too. He speaks less, runs less, and generally conserves energy. He is tremendously emotional and cries easily.  He grew increasingly lethargic and is now resting and sleeping every afternoon.

He has not regained weight despite our very best efforts and help from nutritionists and dietitians. He has the diet of a lineman paired with a hormonal teenage girl on the verge of a break-up. He is 47 pounds, up from 45, so he is constantly cold. He plays and curls up next to the space heater often. He can count his ribs and is sad that ‘his muscles are gone’. The amount of protein shakes, butter, and high-calorie foods consumed in this house is impressive. We even added carrots and green beans to the edible veggies list! He is also keeping everything in and staying hydrated.  He had his renal function blood test yesterday. His ability to overcome sensory discomfort and the stress of injections and blood draws has improved tremendously. We have visuals that show every part of the procedure to help him understand what is coming. It doesn’t hurt that the nurses and Child Life Specialists are attractive, young ladies who love a boy in a newsie cap and tie.

While Jonathan is sleeping, NO ONE else can because of William. Sleep problems have plagued us for three years, despite specialists, sleep studies, behavioral therapies and every ‘solution’ under the sun. We are taking shifts so that each adult can get  a minimum of 4 hours of sleep each, which is usually all we get before he requires the sensory input of his swing or trampoline to keep him from banging against doors and walls.  He averages 5 hours a night, usually waking by 2-3 am.  He still looks cute in the morning. I…do not. Gather your college all-nighter memories while ye may.

William is also regressing and attention seeking, typical of a youngest-turned-middle-child. However, he is showing signs of becoming a great big brother. He gets wipes and tries to help with diaper changes (this has potential!), tries to push her swing (yikes!), and cares for his baby doll. Much like mine, his baby only wants to eat and sleep right now.

Elizabeth Joy IS a joy. My goodness, she is a blessing. Jonathan and William’s first years were full of medical issues, crying and colic, eating issues, and a crash course in survival. Comparatively, she is an incredibly easy baby aside for her gift for diaper-filling and flatulence. You can imagine how the boys LOVE the toots. I’m enjoying it while I can. Her personality thus far makes me anticipate a passionate redhead that will keep us all on our toes.

Here I sit, looking at the snow which caused school cancellations. William is dancing to music, Elizabeth is sleeping in her swing under a handmade blanket and Jonathan is asleep on the couch. We are at rest, knowing what is coming will require resolve.

Here is to the start of 2018. Rest and recover soon, my beloved sickos.