Remembrance

If you're old enough to remember thirteen years back, you know what happened. Nothing particularly ominous stood out that beautiful sunny day. We settled into our routines and kicked back for another day of normal. Then it happened. You know where you were sitting. You know how time stood still and nothing in the world mattered to you except your family and your friends. Everyone wanted to know one thing: Are you safe? We knew that there were hundreds of thousands of people who would not get the answer they so desperately wished for.

No horrendous act, no matter how far-fetched, seemed impossible after that. We raced home half expecting to hear bombs. Fighter jets screamed overhead. We cried. We held each other tight… and we watched in horror as our American brothers and sisters were murdered in cold blood by terrorists.

Personally, I was sitting in my cubicle at the financial firm I worked at in Richfield, OH. I glanced up at MSNBC and saw smoke coming from one of the towers. We half joked that the pilot must be pretty bad to not see the world trade center. What our television screens couldn't capture was the magnitude of the explosion. This was no little misguided Cessna. Then the second explosion came. A second plane. We stopped joking then. Our hearts seized with fear as reports from the pentagon and flight 93 popped up on the screen.

I remember clearly that before we all raced home that morning, we gathered in conference rooms and prayed to God. We hugged and held hands and we prayed. We were brought to our most basic and desperate human form and what we did in those moments spoke more about the spirit of man than any theological debate ever could. We seek the one true God.

This morning we remember the horrendous acts carried out on our nation and we mourn the loss of thousands of lives and millions of dreams. With the spreading threat of ISIL and a president who stood before our nation last evening claiming that ISIL isn't Islamic, I honestly don't feel that our nation has much of a secure future left. Beyond this life though, my security lies in the blood of Jesus Christ. And though the journey is perilous, the ending is sure.

Love Is Enough.

I was a little bit amazed at how freeing it was to share our (my) struggles with other people in my post yesterday. So, today I'm thankful for all the prayers that were said on our behalf. Thank you so much.

Gabriel started a new preschool in Cleveland. In terms of distance, that would be 63 miles from our house to his school. Yikes. However, this learning center offers something called "Conductive Therapy." It's intense physical therapy integrated into an academic learning setting. The professionals at Rising Star believe Gabriel has what it takes to walk. The prospect of Gabriel's mobility should be more than enough to rouse my enthusiasm, but it's hard to send my four year old 63 miles away almost every day of the week- with a different person. That's why it's my goal to bring the "Rising Star" program to our county and local schools for kids who could benefit from this type of learning.

Family have offered, and been recruited, to help transport Gabriel to and from his school, but it's tough to know how much time anyone can truly commit to an undertaking of this magnitude for a prolonged period of time. Frankly, it's overwhelming.

This morning, I found myself unprepared to hop into the car at a moment's notice. Today's chauffeur became ill, so Amos decided last night to take Gabriel with him on a delivery, that we just so happened to have on our schedule this morning, in Cleveland. The day's schedule quickly became more congested than he could handle and, after some back-and-forth, I ended up taking Gabriel to school.

Chaos ensued as we hurriedly packed necessities into the van after seeing the oldest three children off to school. The GPS isn't up to date and I got off at a wrong exit. When I finally did get back onto I-271, a little silver civic nearly side swiped me as he tried to get into our lane but, apparently didn't see me. I swerved off the road to avoid the collision, taught Gabriel a new word, and got back onto the highway. I started bawling like a baby and glanced in the rear view mirror at the boys. A crooked little smile met my eyes. The atmosphere calmed in the van as I drove onward an forward. All had fallen quiet for a few minutes when Gabriel's voice broke into my muddled thoughts. "You love me mommy, and I love you." "I love you a lot, Kinzy." I said. "Yeah, and I love you a lot." came his reply. Suddenly, I felt like a real loser being in such a foul mood all morning. That's what it's all about, right? Love? Obviously my four year old has a better grasp of true love than I do.

Soon Gabriel reminded me that I hadn't even remembered to feed him breakfast, and he asked for Burger King… over and over and over again. I told him I didn't see a BK nearby but promised to stop as soon as I did. He got creative with his reminders by calling out "Oh Burger Kiiiiing! I can hear you but I can't seeeeee you!" He always finds a way to make me laugh. I wasn't really in the mood for Burger King and hoped to see at least a McDonald's nearby. Since he only gets tater tots anyway, I snuck through the McDonald's drive through so I could get coffee and oatmeal. He was happy with his breakfast and thankfully, school was just around the corner.

At last, we arrived at Rising Star Learning Center. I drove around the crammed lot and finally found a space in the corner (since we still don't have a handicap parking placard to hang from the rear-view mirror). So far so good, right? I opened the doors and unloaded the boys and that's when Gabriel crumpled into a weeping heap in the parking lot. He demanded that I carry him, and his walker, and push the stroller to his class. We were having a battle of the wills and I won. Okay, it was a draw. We made it exactly through the front doors before I dragged us and all our gear to his class room, but at least we made it! At the classroom doorway,  he clung to me like velcro and cried. I wanted to cry too, but anger and resentment that we even had to travel this far for preschool took over. Hot anger at being "special" threatened to overtake me. His "conductor" (that's what they call them here) came to the doorway and kindly tried to coax Gabriel to her. Finally, we peeled him off my hip and she carried him sobbing away. It was a pathetic scene but, to my relief, there is an approximate 1:1 ratio of adults to children. Gabriel's wail carried down the hallway and trailed off as we made it back out the front doors.

I willed myself back out to the van to make the trek home. Is this worth it? Am I really just going to get into my van and leave my little boy in this strange classroom and drive SIXTY THREE miles away from him? I did it and as I backed up, I saw, in my rear-view mirror a line of about seven or eight teachers pushing seven or eight wheelchairs around the school for a morning walk. They were cheery ladies. The kind of people who stand back and cheer when Gabriel tearfully made it through the front doors. They are the kind of people who chose a higher education to dedicate their lives to teaching a little boy or girl to sit up on their own or button their shirt; even if that is the most they can physically ever accomplish. And then they cheer… and that is enough.

Dirty Windows on a Darkened Soul

There's so much worry clouding my exhausted mind this morning. I'll be spinning nonsense if I dare go on without at least a full cup of coffee coursing through my veins. (Or, I'll spin it at an incredible rate.)

I'm not sure if I want to talk about going to the fair this past weekend or the fact that the last few years 

of life have been a nearly unlivable hell. Well, that escalated quickly! Then again, activities that are considered "normal" will do that to a (get out my banner) "SPECIAL NEEDS MOM." 

We were having fun at the fair. Gabriel was able to participate on a few rides and thoroughly enjoyed them. Jonah didn't come to the fair since "he's just a baby." I know at the back of my mind, we'd have brought him if he were a typical child, but we both know that it's just not physically possible to jockey both boys and maximize our time with the three oldest children. In line at almost every ride, I had to fight back the thought that I'd never get to do these things with Gabriel and Jonah. The signs are almost everywhere "THIS RIDE REQUIRES FULL BODY CONTROL." Ok, we know what that means. No Gabriel. No Jonah. I almost made it through the night without an all out breakdown. On our way out, we went to see the tractor pull. We didn't have tickets, so we were just watching from the sides, when we were approached by an older gentleman "No strollers allowed in here." he ordered. I tried to explain that it's more like his wheelchair since he's physically challenged and can't walk. The man shrugged his shoulders coldly and told us to leave. I lost it. I tried not to, but I did. I tried to hide behind a corn dog stand. The lights burned as much as my tears. I tried to let my hair fall in front of my face. I. couldn't. breathe. The very thing I had grappled with all that evening was finally thrown in my face like hot ashes. Mercilessly. 

Oh, come now. Look on the bright side! Haven't I learned how to look at life differently? Sure. Have I met lots of wonderful people for whom I wouldn't trade for the world? Yup. Is it worth watching my boys suffer? No. Never. I will never grow accustomed to this part. I will never know how to feel when I watch my boys left in the dust while a group of kids bolt off to the monkey bars or the slides, or just simply stand up on two legs for that matter. It hurts- every single time.

We're being hurled towards another milestone this week. Jonah turns one on Saturday. I don't know where a whole year went, but it passed with or without my consent. Normally on birthdays, I tell my kids how I knew it was time. What it was like waiting for them, and what it was like when they finally arrived. However, it's very different for Jonah. When he screamed his first cries, I responded in kind. Then everything went black. I was sedated. It was the first relief I'd felt in months… no, years. Sometimes I still crave that sedation. That magic little "off" button was like a hall pass out of reality, even if short lived. 

Then we met for the first time, face to face, three days later in the NICU. "Hi buddy." I said stiffly. He lifted his head and looked at me. The melon sized protrusion from his back was like a tombstone marking then death of his childhood. His feet just hung there, motionless. I'd like to say that we had some emotional bonding and that I knew right then that everything was going to be alright, but I'd be lying. I felt more terror at what life will be like for him than anything. 

So many times, I feel like we've all been deserted. Like we've been cast aside like an old garment. I know that's not true. I believe God's word but there are so many times that I just can't comprehend it in light of our circumstances. For example, I don't know how we're going to make our home wheelchair accessible. I don't know how we're going to keep their BCMH coverage. After all, we were told that we "make $50 a month too much to qualify." So, we took a business loan to keep our business afloat and to avoid losing their coverage. To add insult to injury, we were told that if we were ever deemed to  have made "too much" then we could just pay it all back. How nice of the government. They'll let you make payments. Seems like a predatory loan, but what do you do in this desperate situation? How are we supposed to try to keep a business running and yet convince the government our boys losing their benefits would put us under. Jonah's two week hospital stay was over $100,000. The boys could need a shunt revision at any time and then what? Not to mention AFO's, wheelchairs, walkers, catheter supplies, prescriptions, therapies, vehicle modifications… I'll stop now. I'm getting dizzy. It just seems like being a hard working, natural born citizen of the United States of America doesn't get you far these days. 

This story line seems redundant. Maybe it is. Maybe I've told it or thought it too many times. Here's to hoping my mind can rest after a long bout of emotional indigestion. Life is just seems to be unravelling from one bad situation to one that's worse. I keep asking God to give me the attitude that he desires, because I don't have it in me. I do not possess anything good on my own. 

So as business deals go sour and opportunities slip away from our grasp, and our dreams utterly die, people try to offer relief like "Well, maybe this didn't work out because you're going to have something better." And I say; maybe we just have to suffer well… to the point of death… and no exultation waits for us on this side of Heaven. Maybe it just hurts until the moment that we commend our souls to the hands of God. And the question is, do I love him enough for that to be okay?

Searching For Normal

For twenty minutes this morning, I searched the attic. My fingertips are frozen. I'm searching for the baby toys that I packed up in a grieving rage not even a year ago. My memory is spotty at best, in regard to certain events surrounding that time period. I'm starting to have flashbacks.

It's fourteen degrees outside on March 17th. As if I don't hate trips to the attic anyway. It's a tomb of baby boy shoes. In it are baby boy shoes that I watched unsteadily plod along uneven terrain in search of Easter eggs. There are rain boots that sloshed through mud in search of frogs.

When I was pregnant with Gabriel, and blissfully unaware of his diagnosis, I would go in the attic and hold Jack's shoes in my hands. I cradled them in jubilant anticipation of another little boy running around in them. "Not yet" I would tell myself. "It's going to be many months before I hear the pitter patter of these cute little shoes running around." Then I would slip as much of my hands as I could into those shoes and tapped them on the attic floor imagining what he'd look like in them. And then July 8th, 2010 came. It came like a grim reaper and it took away the dream of seeing those chubby little feet running around in Jack's old shoes. April 10th, 2013 brought  the same horrible news. Worse, actually.

Here comes April tenth again. It's like a bad neighborhood you have to pass on your way to the park. If only there were a way to circumnavigate that date. Jack asked me to chaperone his field trip on April tenth. I'm also supposed to see a doctor on April tenth. It's like some cruel trick that I have to be put in public on the anniversary of something so utterly horrible. I'd rather be put into a coma until that date passes.

So today in my attic when I climbed up there, I glanced at that dusty bag of shoes and cried. I searched and searched for the toys when a memory like a vague dream flashed through my mind.

It must be true, I thought. I must have actually gotten rid of that box of baby toys. Shortly after last April 10th,  I packed up anything related to infancy. Amos asked what I was doing. "I'm not going to NEED baby toys!" I screamed. "Because I'm not going to have a baby to play with them!"

I think that no matter how hard I look, I am not going to find what I'm looking for. Not the toys anyway.