We are not alone

I have had too much to say and not enough words. So first, let me encourage you to click on any of the pics I loaded in the last update so you can get a larger image. The one of Ahn is representative of her nature. Exuberant and joyful. Peace embodied. And let me say, that her joyousness is infectious.

I had a friend say that after a medically fragile child, the typical child can heal your heart. I was foolish and too contrarian to agree at first. I guess I expected a choir of angels to burst from the heavens with a "You're Healed" certificate the day I gave birth, and when that didn't happen, I doubted. But, even with my imperfect faith, I did believe that the clouds would part, eventually. Today, after almost as much time as it takes to earn a bachelor's degree, I am proud, stunned and grateful to say that my brain has resumed functioning.

I want to point out, at the risk of sounding overly self-conscious, that these essays of self-reflection serve a purpose beyond narcissistic navel-gazing. I want to communicate that living with, surviving and thriving with a medically fragile child has its pitfalls beyond the physical threat it represents. It is a threat to every marriage, friendship and family of origin. It should not be understated the tremendous impact a medically fragile and chronically ill baby often has on families, individuals, and the parents' families of origin (ie my family and Jose's). I have had friends and family commend us for beating the odds, but most often it is those individuals who have witnessed our fight, who have also buttressed us in our greatest need. We did not walk this path alone.

For me, I came to realize that there were relationships and people I needed, I craved, I longed for, that had never been and would not now materialize. That the perfect words from the perfect people would never be realized in this life. But that the imperfect world, the one I did not find enough comfort from, was the only one I looked to. And like the rain, it comes slowly and seemingly from an unimaginable height. And even though it does not come from where you hope, or seek or expect, you do get exactly what you need to fight another day.

I cried all the way home, listening to the radio, where the author of a book talked about this thing he invented and wrote about as a response to his cancer in the face of his recent parenthood to twins. He formed a Council of Dads as a safety net, in case he wasn't there to raise his twins. And I thought, what about me? Where is my council of children, in case my son isn't there anymore for me to parent? I prayed and coveted more and more babies during that first year of Bo's life. But the reality I came to understand was that even if I converted to become a Quiverfull mother, there would be no council great enough to absorb the tsunami of grief that threatened to drown my essential being.

And even though my parents will never be the parents I hoped they would be, and I will never be the child they imagined I would be, I am satisfied that my love for them is great enough to supplement my shortcomings, as I know that the roar of their love is more than enough to drown out theirs.

God is with us, in the form of our family, our friends, our steadfast hearts. Burning the midnight oil for far longer than eight nights. The reality of this magic outlasts our own doubt, our own fear, our own terror.

long overdue

Four Seasons

My husband would rather not see winter again, ever. Or Fall or Spring. Me, I'm a Michigander. And while I can appreciate the marvels of nature in the Southwest, the Grand Canyon, the oceans, the deserts and the redwoods, I get a kind of peace here that has remained unmatched. I love the confetti of color the falling leaves make as the trees turn colors. I love the smell of earth and minerals when the spring showers quench the flowers. And I do, I love the quiet when the world is coated in a blanket of snow. I look out of the bathroom window onto the street. So quiet, even with cars shushing by. The tree limbs hanging their down around the house. I can't wait. I know it will be a long, cold season. And it does grow tiresome when it's muddy and cold as far into the year as April. But even three months of quiet, dazzling snow. Cold weather keeps Bo more stable (less likely to dehydrate), and so I look forward to the freeze as Bo's springtime.

Living, Waiting, Hoping

My life is full of love and hope.
Bo: We are having a conversation!
Me: Yes we are.
Bo: Once upon a time, there was a little steam engine. It crashed. Into Miss Jeanine's store. And there was a fire. And Corbin was hurt. He had to go to the hospital in an emergency vehicle.

He's three. He's amazing. He has a chronic, life-threatening condition. Every time his pumps start beeping, my heart races, I break out into a cold sweat, and I think how close we are to losing him. Then I think, well, any child could walk into traffic. Or fall off a bike. Or eat a battery. But. It is like I watch Bo walking down the centerline of an undivided highway. Every day. Every. Single. Day. His chances of disaster are much higher than your average toddler.

So I put my existential panic in perspective. Readjust the focus. And soldier on. One slow foot after the other. Feeling, and re-imagining the feel of his soft hot hand on my arm. The small, sweet kisses. The weight of his body as I carry him down the stairs. Those irreplaceable sensations drifting onto my heart everyday like Christmas. The sound of baby Ahn's newfound giggle. Her whole-body smile. The feel of her soft, cool cheek against mine. I will never get enough of that. Please let me have these presents every day. Every day is Christmas here. And I step one foot in front, then behind. forward, backward. Lingering in This Today. Slowly. Luxuriating in the Today we have Today. Only touching the edge of our sea of Tomorrows.

Why Do It?

There's Just Do It, and Why Do It. Blogging seems so 2001. A pet-rock type phenomena. But I am stalwart in this project. I am dedicated to the off-chance that someone searching the huge junkpile of the internet looking for hope after an infant's diagnosis of microvillous inclusion disease will stumble upon us.

While it might seem that we are more or less a regular family, it cannot be overstated that Bo's existence is an outlier, a miracle if you will. He wasn't supposed to live past 1. He is now 3 and in preschool. The magic here is that this good health IS reproducible. Just add Omegaven, and voila.

Maybe that's why I have such a hard time documenting Ahn's infancy. It is so different from Bo's. When Bo was 3 months old, we were in Boston, trying to get Omegaven, fighting for his life, staring down the barrel of a rising-biliruben (~9)/liver failure gun.

This week we celebrate: my mother's birthday, our 10th anniversary, Ahn's baptism, her 100 day birthday and my sister's birthday.

Happy September!

His Last Days, as an only child

As is my wont, I'm posting pix 3 months old. Besides lazy, my other excuses include: paranoid that my medically fragile child meets a most unfortunate turn in the road, ditto newborn, ditto older home. Two out of three since these photos were taken have occurred (see the janky line issues, and the not-mentioned hole in the ceiling incident).

These are from the weekend preceding Bo's big #3 birthday, the one the docs in Ann Arbor insisted we would never see, at least not without transplant and huge medical complications. They were wrong again. Each passing day is a testament to their utter wrongness, on so many levels. I'm not mad, I'm not hatin', I'm just sayin'.

Don't get me wrong, I love our house; it is built with old water-tight wood, plaster, brick and apparently the thickest cast iron tub our plumber has ever seen, but why our plumber knows about the thickness of said tub is part of the story. There was a patch in the ceiling of the living room, under the tub. During my maternity leave I noticed the paint bubbling at that site. My MIL matter of factly stated that it was a moisture issue, so required plumbing before plastering. In fact, the previous owner had smashed/discovered a hole in the ceiling, and instead of fixing a slow drip, shoved half a dozen towels up into the ceiling and patched it up. Still leaking. The tub was leaking down the back into the ceiling, and out the front with a noisy dripdripdrip. When we replaced those fixtures due to the drip, I guess the new fixtures leaked even more (thus reinforcing my notion that older homes are better, as it took nearly 80 years for those original fixtures to give up, and less than 3 for my new ones to do so; I digress). So, bubbling paint. So the plumber smashed a hole, fixed the new fixture, replaced the old tub drain, and removed the moldy towels. The handyman ("Joe the Builder, to you, if you are a toddler) patched up the hole better than when we bought the house. And Jose will paint it this week. If I ever run into that fool who owned the house before us, I think I will give him a hard punch in the nose, or at least a string of obscenities. But, even with that ordeal, I'm glad we found the mysterious source of the occasional musty odor we'd detect in the house after a long weekend away. And as a microbiologist, I am every which way but grossed out, and totally relieved to be rid of those grungy mold/mildew towels.

The Real New Year

I always thought of Fall as the real New Year. This is more true than any Fall. In two weeks, I will return to work from maternity leave. The same week, Bo will start preschool! There were many dark days, strung together, end to end, like one jagged tooth after another that seemed to say this day would never come. So when someone asked me if I was going to cry, yes, but not for the reason most parents do.