Testing, Testing…123

Yesterday was Thursday. Thursdays are when myelo clinic is held at Akron Children's. We took the boys to meet with a team of doctors to make sure that what is still functioning in their bodies is doing so properly. 

The morning started out at 8am with a trip to radiology for CT scans and renal ultrasounds. Of course, we were running late and then Amos got off one road early so we waited in a line of what was most certainly hospital staff exiting to their nearest designated parking area. Amos was annoyed with me for being annoyed with him. Then I reminded him that he would definitely be annoyed with me if the tables were turned. He agreed and then we called a truce. I called radiology to tell them we'd be late. They politely told me they'd let the team know. I know they were probably rolling their eyes. I would too. Everybody seems to have a really good excuse and we're no different. Nevermind the fact that I woke up at 2:30am with Gabriel next to my bed, begging for a drink of water, at which point I discovered that Amos wasn't in bed. He was out delivering a dumpster really late so we didn't fall behind the next day. I noticed a missed call from him, but I had long fallen asleep. I of course assumed that he was dead somewhere, so I called his phone immediately and heard it ringing downstairs. Whew! At least he made it home alive. 

He also couldn't sleep, because he decided to drink a Mountain Dew, so he watched a movie. I freaked out at him for scaring me and he came up to bed… but didn't set the alarm clock.

Fast forward to a little after 7am. (We should have been up at 6:30 getting ourselves and the boys ready.) We scrambled to prepare. Our friend Diana was there, at our door, at 0700 hours, to get the kids on the bus for us and we were still in bed. Ridiculous, but not a complete surprise.

Finally, we managed to get out the door fifteen minutes before our appointment, but still have a 30-40 minute drive depending on traffic.

Amos dropped us off at the revolving door and Jonah and I made a mad dash to radiology. They got us right in. As I filled out forms, the intake person sitting in front of me was fielding calls from all sorts of late parents like us. At one point, the phone rang and she said "I'm not answering that" just loud enough for her co-workers (and me) to hear. I couldn't blame her.

While Amos parked, I filled out Gabriel's forms as well. Just as the boys walked in, it was time for Jonah to head back for his CT scan. Gabriel calls it the "donut machine" but not in a good way. Jonah and I made our way through the maze of hallways and entered the room of the donut machine. Jonah also disliked the looks of it and started wailing immediately. I laid him on the table and we velcroed his arms down with two layers of thick velcro straps. He screamed louder. I was supposed to hold his chin while simultaneously cheering him up. I held up his chin, but he hated me for it. I'm sure he would've slapped me if his arms were free.

Finally, our little torture session ended and we were free to wait in the small waiting room outside the ultrasound rooms. Amos came back with Gabriel. Both boys were slated to have their renal ultrasounds simultaneously, so I called dibs on Gabriel. I'm sure glad I did especially because I could hear Jonah screaming in the next room. 

Gabriel started questioning the ultrasound tech immediately. "What are you doing? What's your name? Where do you live? Do you like your family? Who's your family?" Then he went on to talking about guns and four wheelers. We learned a lot about Emily. We'll call her that, because I can't even remember her name, but I know that she saw a coyote recently and her fincee isn't a hunter, but her mom's boyfriend, Billy, is a hunter. And so on…

Finally, we made it up to clinic. Gabriel asked every single doctor if it was time to go home yet because he wanted to go to "Canera" which is Panera, for broccoli cheese soup.

Jonah wheeled his way back to the room in his zip zac. He had a following of women swooning over him that would've made the Beetles jealous. People poked their heads out of rooms as he passed. I think he knew it too, because he did a couple 360's which is always a crowd pleaser. He chased one nurse trying to hit her toes. He doesn't know that they don't know that that is a game played at home and was only discovered by accident because it really does hurt when he runs over your toes. I explained the game, but the nurse still ran the other way. By the time she stopped, he didn't want to run over her toes. He probably looked at those big medical clogs and thought "forget it."

Nurse Shannon got us back to our room and Gabriel sat on the table asking tons of questions. Then he said he wanted to give me a kiss. I leaned in and he licked my cheek. I love it when the kids decide to do weird stuff in public so that we look like total psycho's at home. I reminded him once again not to lick my face like a dog, because it's gross. It was too late, Amos and I were pegged as french kissing maniacs at home. Se la vie. Not even gonna explain that Gabriel is obsessed with nature shows and also just watched way too many dog movies this past weekend.

Dr. Hull came in to see the boys. Dr. Hull is the rare doctor that is so intelligent but actually takes parent concerns to heart and answers in the most honest and humble way. He's a great doctor. 

Then we saw Dr. Jones, the orthotist, and we also love him. He engages with the kids and is just all around pretty cool.

While Gabriel was waiting for Jonah to be evaluated, nurse Shannon raced Gabriel up and down the hallways. She's amazing. She got three rug burns and then showed up with toys and snacks. 

Gabriel hadn't gagged or vomited in days and things were looking up. Then, he downed three juice boxes and right at the time that neurosurgery came for evaluation, he started vomiting everywhere. Every.Where. About seven or eight times to be exact. We were trying to discuss the possibilities of what was happening as we busily mopped up piles of regurgitated juice and crackers. It felt like a scene from "I Love Lucy." So, now Gabriel has to have a shunt function study and possibly an MRI and we're dreading it. 

The boys were supposed to stick around for hip X-rays. We walked all the way to the cafeteria and it was packed. The boys were crying, whining and just completely miserable. At that moment, we looked at each other and decided it wasn't worth it, so we turned around and headed to the parking garage. Some other day we will deal with hip X-rays, just not today, we thought, not one more minute here.

We sat in the car and returned all the customer  phone calls we missed while at our appointment. When we got home, I filled in all the appointments in the schedule. Amos sat next to me in the office chair and fell into a deep sleep. 

Something inside of me was just so unsettled. I decided that it was Dr. X. That's what I'll call him. He was the one doc in particular that asked about Gabriel's PT that he was receiving. We told him about conductive education and he was already aware of it and then took a the time to basically tell us that he didn't endorse conductive education. Conductive education is like a regular emphasis on education while also incorporating an intense approach to physical learning. I was once the greatest opponent of conductive ed. Now, I'm trying to bring it to our locale. Since he started, Gabriel went from constantly sitting and crawling, to standing constantly. I don't think it's a fluke that he has gained sensation when he passes gas or has to void. It's not consistent, but prior to conductive ed, it was non existent. So, when Doctor X called conductive ed a "social movement" which at that point, I wanted to let him have it, but he wouldn't stop talking long enough for me to ask who died and made him king. He just yammered on about how it wasn't studied scientifically or proven, blah, blah, blah…

Well, my son is living proof and I don't really give a crap what the opinion of science is. Even Gabriel's public school teachers commented on the strength he's gained, that he stands straighter and is constantly standing at school. I really can't stand when doctor's just have to give you their half-a-million-dollar-opinion just because they can. From our standpoint, we see our little boy moving his toes in ways he never has, strength he didn't have a few months ago, and even learning to use canes. So put that in your pipe and smoke it all you nay-sayers. This is more than a "social movement." Good grief.

That being said, I am holding a meeting tonight in Seville, OH for conductive education, and if you or someone you know has a child age 3-5 with cerebral palsy or spina bifida who would like to learn to thrive in spite of their physical limitations, contact me on FaceBook or leave me your email address in the comments section.

The Humble Spider

Tonight was another emotional roller coaster. Why I suggested "Charlotte's Web," of all movies, is beyond me.
Thankfully, everyone else was asleep because Gabriel and I were cradling each other and sobbing and sharing one two-ply napkin for our tears. I'd dab my face, then wipe his… what a sight!
You know, at the beginning of the movie he said, in a real matter-of-fact kind of way, "I kind of hate spiders, ya know." I thought he would be emotionally immune to her passing.
But we all fell in love with Charlotte (and her five hundred and fourteen children) and when she told Wilbur that she was "languishing...dying" well, I looked over and Gabriel was rolling his eyes back fighting tears. I could see them welling up in his eyes and spilling out onto his cheeks. I put my arms out to him and he just crawled over to me and fell into my arms. We were hugging so tight and crying so hard! I mean, why not? Everyone was sleeping and we just held each other and bawled. What a cathartic experience.
After our emotional breakdown and subsequent recovery, Gabriel asked, "can we get a pig like that?" I told him we have a cute little Jonah and that's close enough.

How To Train Your Emotions

We had movie night tonight. We usually do that on the weekends with the kids. As usual, I am coaxed out of my quiet corner of the house and into the basement where the tiny boys fight over me. Jonah won for a while. He played the kissing game, the one where he just kisses me and anyone sitting within a two cushion distance, back and forth the whole time. Then he plays with my hair and drapes it over my face.

Amos pauses the movie a hundred times and rewinds to hear what he missed because the little boys are causing a stir. Also, when we watch kid movies, he morphs into an eight year old boy. It's really amazing.

Tonight's cinematic DISAPPOINTMENT was "How to Train Your Dragon II." Spoiler alert! Click off this thread if you haven't seen it and don't want to know that Hiccup's beloved father is killed when Toothless is temporarily mind-controlled by the alpha male dragon and zaps him... while he's saving his son's life.

The ONLY reason I wasn't sobbing uncontrollably like everyone else was because I was being kissed by a mind controlling toddler in my lap and I couldn't see a thing. 

Ava was sobbing so hard she was gasping for air that I thought she might stop breathing. Gabriel was crumpled in the corner of the green couch mopping his tears away with a saturated tissue and crying "I give up!"

Jack tried to remain 'Stoic' (pun very much intended... if you've seen the flick).

Andrea was taking statistics on the ratio of cryers to non-cryers, and that was probably just to keep from crying herself.

After they float the dad's body off on a boat and set it aflame with burning arrows, they dub Hiccup the new leader. Oh, one last part. Did I mention that they had just been reunited with their wife/mother after twenty years of longing and separation? 

Fast forward to bedtime and Amos is sandwiched in the girls' bed. Gabriel is passed out from emotional exhaustion and Jack is cuddled up with Jonah and Frank- the stuffed dachshund.

The End.

An Update

Today has been full of highs and lows, worry and anticipation and just all out terrorizing fear. Through it all, so many have poured out offerings of prayer and I am so thankful for everyone's amazing support. Without it, isolation and certain depression would have set in and just been unbearable. I am thankful for those who have been the hands and feet of Jesus to us. 

Gabriel's results came back totally clear today. We're dumbfounded. We're amazed. Mostly, we're just so thankful to our merciful God who made this possible. Even the doctors were sure they'd find a shunt malfunction. They didn't.

Please don't stop lifting us up in prayer. I can see the stress on the older kids as well and when I am in duress, I am not a good support for anyone. Emotional exhaustion has kicked our butts today. After our gift of good news, we are anticipating a fun evening at home with a few of Gabriel's best cousins. 

He may even go get baby chicks with grandma still!

A Change in Plans

After a few days of intermittent gagging and vomiting episodes, Gabriel is headed to Akron Children's Hospital. As of this morning, he could not keep down Gatorade and that was just the last straw. That, and his fever that he spiked in the middle of the night. 

We can't assume that it's viral. Gabriel has a shunt that could be blocked or infected. He could have a bowel obstruction. He could have a severe UTI. His Chiari II malformation could be becoming symoptomatic (Please, God! No! Not that!) If it were his Chiari, they may have to remove a portion of the base of his skull to make room for the brain tissue that is being pulled downard. 

My mind has been running wild all morning, and it even ran into "brain tumor territory" which had my heart racing and mourning over something that hasn't even happened yet. I gagged down a cup of coffee to ward of my splitting headache and I'm just waiting for Amos to call me to give me updates.

This morning was supposed to go something like this:

I wake up and get ready before anyone else in the house wakes up, and join my mom and sisters at the Chapel in Green for the Authentic Intimacy conference. Meanwhile, Gabriel suits up in his overalls and goes on a date with grandma to buy baby chicks. It's all he's talked about for weeks. Every cardboard box he gets his hands on is a chicken house that he's gonna build.

What this morning really turned into:

Jonah screaming at about 1:30am. Gabriel crying at 2:30 am with a fever. Amos was sleeping in Jonah's bed with him, and so Gabriel joined me in my bed. I gave him motrin, even though he insisted that he felt fine. Fast forward to about 6am... Jonah peed through his diaper. Gabriel seemed ok, until we gave him Gatorade which he started gagging on immediately... followed by non stop vomiting. Amos took him to the hospital. I'm here alone with the kids. 

The other kids are in the basement watching a movie and entertaining Jonah. I'm trying to jockey the phone calls from customers, which is probably good at keeping my mind occupied, but I just want to ignore all of them and  yell "Leave me alone, my special needs kid is sick and I'm terrified!"

I called my friend, Megan, who called our shared hospital friend and clinic coordinator, Shannon, who informed us that several of the myelo kids have been admitted over the last few days with rotavirus. (My mom gut says this is not viral.) However, there's supposedly an amazing neurosurgeon on staff this weekend because the regular is out of town. Also, he's from the U.S. Navy which makes me feel even better for some reason. Megan called me back and asked one simple question "what do you need?" Out of nowhere, I broke down. I was gonna keep it together and just say "nothing." My entire body betrayed me and my breath left in such a hurry that I feared I was going to gasp loudly to reinflate my lungs. So she just started praying right then and there. It comforted my heart and I realized that at that very moment, that is everything I needed: Jesus.

Amos, the calm parent, is at the hospital. Last I talked to him, he said that Gabriel tells him that as soon as they're done with his "check up" (that's what Gabriel keeps calling it), he's gotta go with Grandma on his date to buy baby chicks. I am seriously praying that the day ends up that way.

Before Gabriel left, he puckered his little lips up into the the biggest heap of kisses you've ever seen and he laid one on me. Then he said "I miss you mommy." I can't get that out of my head and it's driving me crazy.

Fold by numbers

As we sorted and folded laundry, Ava and I discussed plans for our next dinner date to Panera. As we chatted, she picked up a picture of her with Andrea and confided in me that she really missed the days back when she was six. (She's seven as of last September.)

She told me she cried when she turned seven. I didn't know she felt so strongly about growing older! What kind of mother misses something so monumental?! So, I asked her what she missed the most about being six years old. 

"Well..." She stammered nervously. 

My anticipation of some very nostalgic memory being unleashed was mounting.

"Six is an even number, and I like even numbers." 

I love my girl to an even million pieces.

More Than Pretty Words

There's actually a lot on my heart this morning, actually every morning. Grief is a really heavy burden to bear and it tires everyone out. I really like to share all the sweetness that my boys shine into our world every single day, but no rose is without thorns. You know, there still isn't a day that goes by that I don't question this reality? It's a doozie.

Grief is no competition and I know mine doesn't top somebody else's, so if nothing else, take my grief and know that I share in suffering, maybe not your specific brand of suffering, but suffering in general.
This morning, the Lord brought encouragement to my soul, even before I knew how badly I needed it.

It's a Bible verse, of course. I sometimes refer to verses like it as a "wall verse." A "wall verse" is maybe one that we memorize in our childhood and sing them to a nice Sunday school tune. We might repeat it in speeding ticket situations when we get older. It's not a bad thing to remember scripture in every situation, it's a good thing... especially when we use them in context. More often than not, (I) we repeat the verses into mundane oblivion, but keep them around like a four-leaf clover.

When we have a space to call our own, we might put our wall verses in frames or stick them to our walls because they're really pretty and encouraging and they make us look super dependent on God and like we trust him with our life. (I'm really only speaking for myself and maybe for anyone as doubtful as I.)

And then adversity strikes. Extreme, irreversible, tragic adversity strikes and you start to look at all your wall verses with doubt and maybe even some disdain. You might even pull down your wall verses, or look at the wall verse you bought on clearance for $3.99 at Target but didn't know where you'd put it up for all to ponder and admire... and now that life has hit the fan at full force and you're a blubbering mess, you don't want words on your drywall that you don't even believe!

Today's verse is Phillipians 4:6-7...
"do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."

Several thoughts came to mind. The first being that I really need to worry about this stuff because, if I don't worry, who's gonna take care of it? Then God repeated it a little louder to me. "Don't worry about anything, pray about it istead..." He kept washing those words over my heart like steady ocean waves. He keeps inviting me to tell him about it.

All at once, I marveled at his patience. Lord! You mean I'm free to come crying to you day in and day out and you will never tire of it? What? What kind of grace is that?

God has more often been the recipient of my challenging anger and endless tirades of cursing and yet, when I looked up, he was the only one left. Not out of obligation, but out of love and concern. Very slowly, my heart began to open to his grace, to accept the fact that he alone is enough to satisfy my soul. When given the courage to embrace that truth, you can take the verses from the walls of your home and you engrave them upon the walls of your heart. More than pretty words, they are quite literally the anchor of your soul.

My $3.99 Target clearance wall verse that took me two or more years to put on the wall of my house, because I didn't really believe it possible, is Phillippians 4:4 "Rejoice in the Lord always."

Quite Frankly the Best of Friends...

I was grocery shopping the other evening and spotted this cute little plush dachshund. 

Jonah really likes the girls' stuffed animals so I wanted him to have his very own.

It was love at first sight. Jonah gave him a great big hug and lots of kisses right away! He giggled and smiled with sheer delight.

Andrea has already crocheted a handsome red collar for him.

His original name tag said "Frank" but I'm not sure if that will stick. We may have to wait for Jonah to be able to decide.

Ava suggested "Turbo" and Gabriel's pick is "Peregrine Falcon." 

I think we'll just stick with "Frank" for now.

You look thirsty Frank. How 'bout a refreshing glass of air?

A Hairy Situation

Tonight I decided it was time to give the boys a haircut. Gabriel went first and other than squirming a little too much, his hair turned out alright. Jonah was next and Jack very patiently held his squirming, screaming brother as I tried to trim his beautiful golden locks. (I even managed to save one in a plastic baggie.) After that ordeal, Jack transported Jonah to the bathtub where Amos was giving the little boys a scrub down.

Jack came back to the kitchen and perched on the little white four legged stool. It was so small for him that I thought he was squatting. The trim attachments were neatly lined up in order from shortest to longest as they are before each haircut... or so I thought. The back was shaping up nicely with the number three attachment, so I traded that in for the number 8. We've decided that we don't like the top too short. Just like every haircut before, I dragged the clippers right down thee middle of his head. As the wave of hair rolled and grew as it rolled over the contour of his head I thought 'boy his hair really got long this time that's a lot of hai...' 

Dread came over mer.  It was the number two clipper! I totally gave Jack a reverse mohawk. How in the world did the number two get in the number eight spot and how did I miss it?! 

I gasped. "WHAT?!" yelled Jack. 

If anyone inherited the panic gene from his mother, it's that one, so as calmly as I could, I answered back, "Oh, nothing, I just accidentally gave you a summer haircut... but it's still March... That's all."

Though he played it really cool, I could tell that he was a little, um, concerned. Then he asked for "the stuff that the girls take to get their hair to grow." I chuckled to myself that he even has a clue that I have biotin in the cupboards. He asked if his hair would grow at least a quarter of an inch by morning. Ummmm, no, but here are a couple of Flintstone's vitamins, take those too. He never was a fan of my haircuts, so I'm sure I've burnt that bridge to a crisp. Also, I'm pretty sure spring pictures are next week at school. Not even gonna bring that up.