Monday, January 27, 2014

Anniversaries are powerful things. I'll often find myself irritable and uncomfortable in my skin for a day or two, to later realize my body remembered a loss my mind momentarily forgot.

At my house, we are walking tenderly over anniversaries from last year, all of the losses and the heartbreaks of preparing to let our son go- it's a journey that resolved in grace and joy, but the valleys were so real and so deep, there's still a hush over those memories. This week last year we were so blessed to be given a trip to Redding, where people of faith prayed for R2 and we soaked in the peace, even as he deteriorated. That trip was followed by one of our first (if not the first) family vacations, which our healthy kids desperately needed.

Over a 2 week period, R2 had grown increasingly detached, and was no longer making eye contact or holding his head upright without assistance. We fed him pouches of pureed food, because he had lost the ability or the will to chew. The last day of our vacation, we watched him decide to die. There's no other way to describe that- there was just a sense of separation where we could tell he was no longer willing to fight his brain and his body and he just quit. It was very surreal, standing in a water park, the sounds of our 3 healthy children calling and laughing, while we held R2's pale and prone body and mourned a loss that was not yet, but was.

We arrived home that day, about one year ago today, to an entirely remade house. Our friends and even strangers who loved us had raised funds and manpower and had done an unbelievable act of mercy and kindness- without our knowledge! We walked through every room with a sense of amazement and overwhelming emotion- every detail was done with precision and care- every room customized to us. At the time, we were spinning; we tried to take in what had been given to us, but it was so grand and so massive, it would have been hard to acclimate on a normal day, and this had been a very abnormal day.

In the weeks that followed, we took such comfort from the words painted on our staircase, "Does He not see my ways and number my steps?" (Job 31:4). As R2 faded, we tried to cling to a God that knew every step and every day. When the healing began, we slowly started seeing in color again, and  realized that we were surrounded in not just beauty and comfort, but the prayers of hundreds of people.

My house has been soaked in the tears of people who love and pray. Through the plumbing, under the flooring, in every cabinet and every shelf, the hands of Jesus have been felt. As we pass through the anniversaries of our sorrows and soon, the anniversaries of our joys, we are continually and unceasingly blessed by the gift that was given- our home.

We live in this house. We sleep beneath the blankets and we dream together on the couches. We dance across the rugs, and run laughing up the stairs with Job's words. We want to say again, one year from the day we opened our new front door, thank you. Thank you to all who gave, and who prayed, and who labored. Your efforts gave great hope and joy. Thank you. May you be every bit as blessed as you have made us.

Tuesday, January 14, 2014

(This was an essay I submitted for a contest- I did not win so now I'm allowed to post it. It's longer than anything I ever post, so that's the why.)

My mama is what some might consider the stereotype of an older Southern woman. She is sweet looking, soft-spoken, and tough as nails. Her mama might be even tougher. Now, my mama and my grandma don’t talk much about the hard times, maybe because so much of it was hard times. They laugh easily and fry the chicken and carry their pain like part of their skeleton, ever present and invisible. On a rare occasion something breaks the surface and they will give brief, casual mention to an event that would have ended life for any normal person, an experience no one could reasonably recover from- for them, it’s just one part of the story that made them strong. I learned early on that women in our family wrap grace and femininity around a core- a rock solid strength and will. My mama is unbreakable, or at least she mends well.

As an adult, I can see that she went to great effort to give me a childhood far removed from the Texas hurricane that was her upbringing. Memories of my early years unfold like a montage of sunny days, filled with books and discovery. My deepest wound was temporary, childish rejection on a playground. I wrapped up an idyllic youth by meeting the man of my dreams at 15 and marrying him at 17. My mama loved him, and I guess my daddy thought he’d at least be close enough to keep an eye on.

When I was 20, we discovered I was pregnant. It was a surprise, but not an unwelcome one. Surprises weren’t unfamiliar to us, old enough to be married but not necessarily mature enough to remember to pay a bill on time or take a pill every day. So we took the news like we took most news those days, with laughter and celebration. I spent my days poring over pregnancy books and my evenings eating my weight in strawberry ice cream. When we found out my little basketball of a stomach held a boy, we bought one tiny pair of blue shoes. And then, suddenly, it was over. Three days before my sixth month, my water broke, amniotic fluid and terror mingling on my bathroom floor while I screamed.

The ER doctor was blunt, busy, cruel. Oh,” he said, “you’re having this baby tonight,” and left us in a cold hospital room with our dead innocence and more questions than anyone would ever answer. He was wrong, but not by much. My son was born in a different hospital three days later. They told us he wouldn’t live 72 hours.

I caught one glimpse of him as a team of physicians rushed him away. He was beyond small and a terrible shade of blue, gasping for air. He let out one guttural whimper and my heart tried to grab onto that infinitesimal maybe-hope. My mama didn’t speak, not that I can remember. She just stood there, near enough, reminding me with her presence that we can withstand unimaginable storms.

Decades later, or maybe it was hours, someone gave me permission to get in a wheelchair and go to my baby. My legs were still numb and my upper body was shaking from fear and exhaustion, but I was desperate to see my child, to convince myself that everyone was wrong and we would be okay.

The scene in the NICU was bleak, dimly lit with intermittent alarms screaming from each bedside, beds with miniature, wire-wrapped humans in nests of baby blankets, like some kind of science-fiction horror story about human experimentation. I could not catch my breath; I could not capture a thought. Hours earlier, I had been an expectant mother, like all of the other expectant mothers, with their ripe bellies and glowing complexions. Now I was ripped apart, my womb and my arms empty, staring into a nightmare.

The wheels clicked as we approached one of the stations. It was an open table with a tiny red figure, shaped roughly like a human, although not easily recognizable as such. He was no larger than a Barbie doll. They warned me not to touch him, because even the lightest touch could tear his delicate, still-forming skin. This is not my child, I said, inside my head. This is not a child. Frantic to escape, I looked around for a nurse and made her take me back into the hallway, where my parents awaited their turn to meet the baby I was still waiting for.

My husband and my parents sat helplessly by as I sobbed, my body and my heart shattered. “What do I do? What do I do? He’s not even human!” My mama stood then, all the weight of her pain in her tired blue eyes. “That,” she said firmly, leaning over me, “is your child. You will go back in there and you will speak to your child.” In my memory, she struck me physically. I have since learned that she used nothing more than the force of her words, but they hit me like a blow that will lodge forever in my mind.

She was fierce and I was shattered, clutching a diaper bag filled with formula samples and papers that detailed all the ways my child might die. I was waiting for something, waiting for myself to come back from wherever I had gone to tell me what to do.

I knew I could leave. I could tell the nurse to take me back to my room, where I could scream and cry. I could wait for that child’s inevitable death, and I could grieve and then maybe I’d forget and somehow, get my old life back, maybe. There is no law, I thought, that would make me sit beside that bed until he dies. And who would blame me if I fell apart? Maybe I’m not like them, I thought rebelliously, like my grandmother who raised her siblings, or put on her apron and cooked for her husband’s funeral; short days after his violent and unexpected death. Maybe I’m not like my mama, who fought her way through countless tragedies and college and single motherhood in an era that had no place for that kind of woman. Maybe I’m different, I am breakable and this is too much, I thought.

There was nowhere to go. I was faced with deciding who I was, now that the bottom had dropped out of my world and somebody was going to have to clean up the mess. That is my child, I told myself, testing the thought. That is my child, and I can do this. I leaned against my fear and found I was stronger than expected. This will not kill me, I thought.

They wheeled me back in where that strange, reddened figure lay, illuminated by miniature spotlights. I drew strength from the women who built me and faced my son, my one-pound son with unfinished skin and eyes still sealed from the womb, and long, thin fingers like mine. My first attempt to speak sounded like a croak, my throat raw and throbbing. I tried again, “Hello,” I offered weakly, and with a word, met my child and joined the ranks of the brave, strong women before me. “Hello.”

Monday, January 13, 2014

I don't know what happened, guys. Maybe I blacked out. Last thing I remember, I boiled the fish, and somehow now I have two cats. Unrelated, maybe you think. Word associations or something. No, it's a pet thing. We had an indestructible fish which I inadvertently cooked while changing the water, and then I said, we can't have nice things and also we can't have pets, because of Mommy. Remember that? In fact, we were given a robotic plastic fish for Christmas, because people know about us.

And then I got a kitten, because these children have short-circuited me, and I keep being all Romans 7 and doing the things I don't want to do and WHO WILL FREE ME FROM THIS HOUSE OF CATS? Anyway. We got this kitten, and she's really, truly dumb. I have had a smart cat before- she is not a smart cat. If we move her food or her litter box she gets really confused and she has no choice but to poop in the shag rug and eat breakfast cereal from the table. Not that I have breakfast cereal left on the table, because I clean up after myself and my offspring instantly. But you know.

So She-Who-Must-Be-Stupid kept leaving fecal deposits around and let me tell you something, young wives of America: fecal deposits are going to be your  life someday. You have no idea how much of your world will revolve around trying to keep people and animals and their feces all in specified locations and timeframes. It will rule you, for a time and a time and a half-time, and then Jesus will come back. I'm not sure about the actual timeframe, because, mostly I just read about potty-training, not timeframes.

This one day, there was a lot of psychotic breaking and screaming because of these unauthorized deposits and after I got too hoarse to scream anymore, I told the internet I don't want this cat-somebody-come-get-this-cat-right-now and a lot of people were all like, well, change her litter box once in a while and other people were like, I want your cat.

I broke the news to the family and intercession was made on her behalf. "I will change the litter box every 30 minutes," says Toby and "Tristan loves her so much, " says the MOG, and "...maybe we could just get a fish," says the daughter after my own heart. So we kept the cat and she hasn't had any more accidents, maybe I called her bluff.

But the second cat... I don't know, he came around and I guess I was already broke down because of all the first cat and he was a very friendly stray. I bought him a sweater and left town. When we came back he was still around and so we had both cats "get a shot" so there wouldn't be any baby cats. (Yeah, *I* know it's not a shot). So now they are siblings, see? Because the more cats, the better.

It all makes perfect sense if you're completely insane.

Friday, January 10, 2014

We recently celebrated Toby's 8th birthday. It wasn't on his birthday, because he was born 3 days after Christmas and is destined to spend most of his birthdays in a van driving back from Texas. But we celebrated it, late and at Chuck E Cheese. Usually I think Chuck E Cheese was inspired by a person's near-death experience in which they traveled to hell and saw the whole thing and the devil told them they had to stay unless they swore to recreate that, the darkest room of hell, on earth, and so they did, and franchised it, but the "As Seen in Hell!" slogan never paid off so they changed it to "where a kid can be a kid". (Side note to the longest run-on sentence in recent blog history: isn't that the Toys-R-Us slogan as well? Discuss amongst yourselves.)

This time, it wasn't so bad. All the other kids in Kansas City were home, because we don't drive in the snow here, and so we had the place pretty much to ourselves. The boy wanted a Minecraft party, but they don't have "Minecraft Party" decor section at Party City and I was going to have to build some boxes with pixelated symbols and make axes out of foam and things, because, Toby. So I suggested CEC and a Minecraft cake, with minecraft cupcakes for school the next day. And the boy took my offer. (Whew).

As most of you know, I am very good at making cakes. Also I lie a lot. My cakes are labors of love, which usually are very humorous to look at. Toby is the ultimate cake appreciator, though, and always says "It's exactly what I wanted!" when I'm done, with total sincerity. I know that might not last forever, but man. Gold.

A glimpse into my cake-making process:

  • I see a cake on the internet and I think, surely that can't be that hard (spoiler alert: it could)
  • I purchase 3 times the supplies needed, because I remember the Alamo
  • I bake for a day, and have to renew my Salvation Certificate somewhere between the-cake-is-stuck-to-the-pan and 4000 people asking if they can please just have ONE lick of raw egg
  • I assess the damage and make plan B and C. "Maybe it can be more of a dinosaur shaped pony," I think, "or a rock..."
  • I cover up the cake with all of the frosting everywhere 
  • I accept the things I cannot change, and have the courage to realize it will still be delicious

"Why don't you just buy a cake?" maybe you're asking, and hey, I smell what the Rock is cooking. But a) store-bought cakes usually taste like sponges with toothpaste and b) I really, really enjoy making them. Even the failing part is fun to me, once I figure out what degree of fail I will achieve. The rainbow cake is probably my very favorite, and I actually plan to try that one again someday. Just try to remember, covetousness is a sin, so don't be coveting my decorating skills or you will end up at CHUCK E CHEESE someday, for eternity.

(Disclaimer: all of the photos of good-looking cakes on the first half of my graphics are from Pinterest, not my property or in my skill-set. If you know the official source of the photo, tell me and I will credit them. I tried researching but Pinterest is a black hole. End disclaimer)

Tuesday, January 7, 2014

Really, most of the dates are fuzzy. I do know it was a year ago that we broke the news of R2's fatal diagnosis to the internet. Today marks the anniversary of the most difficult and painful months of our life, and if it made sense, I'd just try to walk away and forget how bad it hurt, and how scared we were.

I can't, and I won't do that, though. Instead I'll build a little altar of thankfulness here, a year later. Today R2 woke up to the promise of baking brownies. No one reminded him, he went to the pantry and brought the box to us first thing in the morning. He has brought the box to us 1000 times since then, just to keep the reminder fresh, in case we forgot that we're making brownies today.

I remember so many moments throughout his life when I would be reminded that he was not normal, that he wasn't going to progress developmentally, that his behaviors might not be correctable- I remember that little shock of fresh grief to remember that he would never be whole. Those realities are still present, but I live in a new reality now, one where there's a little sharp joy that hits me when I realize that he's healthy and happy and this is real, this gift of time and life is real.

We are so thankful. We're thankful for the pain, because it makes this joy so much richer and deeper in contrast. We're thankful for the pain because we can come alongside other hurting people. We're thankful for the pain because we found that even in the darkest, angriest places there is a God who knows us and He is never, ever changed. We're thankful for the pain because it reminded us how very, very much we love our son, and how fleeting life is.

And we are thankful for the joy, for the miracle. We don't take it for granted. I'd write more but I think I'll go bake some brownies instead.

Monday, January 6, 2014

This might be the first Monday of 2014. In fact, I am pretty sure it is, but I am too lazy to go open my iCal and check, so you'll have to take my word for it. On the other hand, if I'm wrong (I'm not), then you can just feel smug about knowing what day and week it is, like some kind of savant.

But since this is the first week of a new year, and a Monday to boot, I decided that my life needed some organizing. What I need, I thought to myself, over dinner, while the Man of God talked about something else, is a home office. What I need is a white office with bookshelves and a vase of flowers and a teapot and some inspiring art. I need a fluffy rug and a door that I can close on the children, for whom I prayed. I need an office in the basement, the unfinished basement. We'll just build some frame walls and then some sheetrock and we'll close it all in and then we'll buy a white desk and a fluffy rug and then I will be productive.

Once I had the room built and furnished, I explained it all to Richy, who was still talking about something else. It was a solid idea, what with the unused basement corner and drywall. Totally logical. His initial response was disbelief,  with the same face he gives me sometimes when I tell him I don't know which way is north. I hope you don't all hate him when I tell you he just flatly dismissed it.

Evidently it's a lot of work to build a room, and also he had some concerns about me being in the basement and not knowing where my children are. I tell you what, sometimes I'm in the same room as my children and I don't know where they are. There's a lot of them, they go everywhere. I explained it again, because it clearly was made of nothing but win. He explained again that I was thinking like a child hopped up on red dye #2. (He didn't say it that cool, I'm the writer.)

The great thing about date nights is unimpeded conversation. At home, any conversation is interrupted at least every 30 seconds by a) sibling violence or b) conversational input from small people or c) just about anything at all because if you think I would be surprised by someone telling me Tristan was on top of the house, then you don't know my life. I would be mad, and scared, but maybe not super surprised.

I explained in more detail, how much I need some space to work. I even cried a little. Did that slow him down? Heck no. He cried too. Everybody's got dreams and evidently, any old body can cry about creative space. He offered half his office. He offered all of his office, and then he got really sad about not having an office, even though I said I didn't want it. We agreed to pause the conversation, and then we talked about it some more. It was one of those Can This Marriage Be Saved moments, except only not a big deal at all.

Then I came home and remembered there is a desk downstairs and it fit in our room and he agreed so problem solved. I think the MOG is just super thankful we got to work on our relationship for a couple hours, anyway.

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