Propagandist Fear

 Lately, I've been very intrigued by the hopelessness of so many worldwide. Suicide rates are skyrocketing. I even called the suicide hotline and they are overrun. People are afraid of being afraid. The propagandist "news" tell them to be afraid; and, like sheep, they comply. 

What this whole thing is about is control and fear. If by chance you've been in a coma for a little over a year and a half and don't know what I'm talking about, I apologize and I hope you regain full health. 

For the rest of use we've been locked up in our own homes, told what to do, what to believe, and what to be afraid of. Remember "Give Me Freedom or Give Me Death?" Well, many are choosing death. That's beyond tragic and it's all because world leaders have a desperation to keep everyone afraid and under their control. People don't want to be controlled, we want freedom as God intended. Yes. God. God gave us freedom that no man can take away, though they try with all their might. 

My own father escaped communist rule and LEGALLY escaped to the United States of America. He taught me well what it would look like when they tried it here. I thought he was just traumatized, but he was actually right. Evil may take its time, but it doesn't take a rest. 

We have more power than any government, and God has more power than any of us. We've been inundated with propaganda for decades. "There are many ways to Heaven... Jesus was just a good person at best... you know the rest." Maybe you've fallen for it. Maybe you've heard that there are no atheists in a foxhole. Well, we're down a foxhole now, and maybe that's the one good thing to come from this. 

The terrible thing to come from this is that people are giving up their lives in order to have last lived on earth as free people. You take away freedom, you take away any will to live. 

Life's Emergencies

What a day! As I curl up on this stiff pleather couch for the night, I'm just thankful I get to feel more calm in my heart than in my body. My precious little boy is sleeping soundly next to me and one major surgery is over. The beeping machines have given way to his steady breathing and just maybe, mine will soon sync with his.

Gabriel had major brain surgery today. It ended up being more complex than we all thought. His right ventricle was taking up most of the space in his brain and the left was nearly non existent. His body just couldn't tolerate that kind of imbalance anymore, and it was letting us know.

In retrospect, I'm sure that God was preparing me and showing me that it was time for this surgery. Though Gabriel's CT scans were not showing excess fluid, his shunt and brain were not working well together. All last week, I told Amos to prepare for a shunt revision. Jack had his orthodontics appointment this morning and Amos headed to ER with Gabriel. 

After Jack had his braces put on, I thought I'd have plenty of time to get him back to school and then back up to the hospital if anything was to be done at all. 

When I initially spoke to Amos to get a status update on Gabriel, he told me that the CT looked "normal for him" and that they might just do a shunt test or shunt exploration surgery tomorrow. I got Jack a bowl of soup since his mouth was beginning to hurt and he couldn't chew anything. By the end of lunch, I called the hospital for one more update... just in case. Gabriel was already prepped for surgery. Jack and I arrived and were ushered in to pre op. Amos told me that Gabriel had been sleeping all morning and was lethargic. I wasn't prepared for what I saw when I walked in. He roused a little bit at the sound of my voice, complained that he was hungry, but could barely open his eyes long enough to look at me.

The anesthesiologist showed up and gave us a very calm and collected rendition of what to expect. We heard this same spiel just a couple of weeks ago. Suddenly, I realized that it was sounding a lot like a flight attendant before take off. I was expecting him to tell me where the masks were and how to use my seat as a flotation device. I robotically signed some papers that I assume are in my baby's best interest and wait for Dr. Hughes. A woman we had never met before was going to open our sons skull and brain, in that order.

Dr. Hughes is the picture of professionalism. She didn't paint any cheerful, unrealistic outcomes. She told us what she planned to do, that she wasn't really sure that his shunt was the problem and that she couldn't be certain that this would remedy his symptoms. At that point, I wanted to graciously thank her for her time and run out of the OR with my kid intact.

At one point, I think she asked if we had any questions because Gabriel interrupted her dissertation to ask the most important question of all "Is there a 'capeteria' with cheese pizza and a mikshake?" She assured him that there was, but first she had to fix his shunt and then we could fix his hunger.

Tearfully, we parted ways with me promising that while he went with the doctor, I'd be ordering his food for when he was all done. Jake, the NP brought me a box of Kleenex that I shamelessly told him I'd be keeping. He didn't mind a bit and was very kind to notice the mascara that I had foolishly worn looked like the Exxon Valdez spilling down my face.

Dr. Hughes told us the surgery should last approximately one and a half hours, but more like two and a half if it was more complex than she hoped.

We waited in the family lounge. My mind was very busily jumping to all sorts of terrible conclusions; especially after the two hour mark passed. I knew that something was not right. Finally, our names were called and we were seated in a consult room for another agonizing 15 minutes. I told myself that if the doctor comes in and shuts the door, that means Gabriel didn't make it though surgery. Well, she slowly closed the door which made me want to throw myself to the floor in despair. Dr. Hughes calmly explained a whole lot about the surgery. Amos was fascinated with all the plumbing of the brain/shunt stuff. She asked if I had any questions, and I really did: "So, is Gabriel alive? Right?" "Yes, he's alive and recovering well." she assured me. "Okay, good, because I don't really comprehend anything else right now and all I need to know is that he's alive." I think she was mildly amused. I was relieved to the point that even though I have never even remotely attempted a back flip, I was willing to try now. 

I did have one other pressing concern... would Gabriel be the same boy that we sent into surgery? Would he have his same awesome personality? Dr. Hughes informed us that she's not an optimist, she 's a realist. She could not guarantee any of that. My heart sank to my toes. I begged God that he would just let Gabriel be upset that we weren't bringing his lunch order to post-op with us. I voiced my wishes to Amos and the doctor. Both told me not to get my hopes up.

Dr. Hughes had to drill a new hole in Gabriel's skull to place his new shunt. There was so much pressure that the pop was audible when she broke through the membrane. However, that was a good sign that pressure was the problem. His old shunt snapped and she couldn't retrieve all of it. There was too much risk of bleeding. She will only try to remove it if it becomes infected down the road.

Finally. It was all over!

We were ushered back out to the waiting area where we told my mom and Grandpa and Grandma Polly that all was successful and that we were headed up to his private room.

Then we were told to come right back to recovery because Gabriel was pretty upset; they thought his incision was really painful and he wanted us. Again, I told Amos that I just prayed that Gabriel would remember his lunch order, just so I could know he's still himself. Again, Amos told me not to be too hopeful as that would be unlikely after such a major surgery. Still, I asked God and he answered.

When we got to Gabriel's bedside, he impatiently asked "Hey! Where's my stuff?!?!" 

"What stuff?" I asked in anticipation.

"My cheese pizza..." he said. 

Still skeptical, I prodded "Cheese pizza and what else?" 

"Cheese pizza and a milkshake." He muttered groggily.

Amos and I smiled and thanked God. We had our boy back.

The post op nurse left briefly and came back with a TY stuffed toy. It's a wolf with creepy red eyes. I got the willies just looking at it. She cheerfully offered it to Gabriel, "You want this little toy to take home with you?" 

"No sanks (thanks)... I'm a big boy." he politely declined. 

"Well, do you want to take it home and give it to someone else?" she asked, hoping for a positive response.

"Nope." he rejected. 

I will post a picture of the scary little wolf tomorrow. I have him safely tucked away where I won't accidentally see him and freak myself out. Think I'll save him for a white elephant gift prank.

We finally made it back to our room where Gabriel gorged himself on hash browns, cheese pizza and milkshakes. I also ordered him some chocolate milk which I noticed was low-fat, but thought I could sneak to him anyway... nope. "This chocolate milk is terrible." he said.

Yes, our boy is back and we're so thankful!

Thank you for uplifting us in prayer. Please don't stop. We need him to not have any brain bleeds, or another shunt failure which is still a possibility. We're not out of the woods yet, but Jesus, our savior and healer, is in control even when life feels like it's falling apart.

Thank you all. Thank YOU GOD!

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.