The Other Experience

Bo was our first child, so a typical child like Ahn is like having a first baby experience all over again. So many things we never dealt with: food in the hair, putting things in the mouth constantly, trying new foods by the bowl, using the stick blender.

Today, Ahn started smacking her lips. Her made-up sign language for "Solid Food!" So I popped her into the Bumbo and started shoveling blended green peas into her mouth. She had peas all over her cheeks, chin, hands (from sucking thumbs while eating- we have to roll her sleeves up!), and a runny nose (thank you Winter). Between bites she made the sign for Eat. Yes, I know. Then when the peas got too thick, she signed for milk! Then more Eat. Smart girl. Then, she signed, All Done. And with eye and nose rub, the natural sign for "sleepy," we went upstairs. And she went right to sleep.

And now, it's my turn. Good night.

Couer is the heart of Courage

"Vulnerability is absolutely at the core of fear, and anxiety, and shame, and very difficult emotions that we all experience. But vulnerability is also the birthplace of joy, of love, of belonging, of creativity of faith." Dr. Brene Brown

It's taken over 20 years, two children, a career change and a life-threatening medical anomaly for my heart to catch up with my head, which is sad, as that head was precocious in high school, but simply on par at middle age. But, it's a blessing that it happened at all. I've seen the dark side that is left unbalanced *it's not pretty. Finally, I can embrace vulnerability and let the fear and anxiety and shame and difficult emotions turn to face me with their joy and love and belonging and creativity and faith.

Because, who is more vulnerable than a child? A medically fragile child? And who is more joyful than that little baby girl? Her brother in the rain (the week before the foot of snow we just got).

Babies, Sleep and Restive Drooling

Somehow they just seem to get bigger and learn more complex things just long enough for me to note them, but hardly long enough for me to linger and savor. They just seem so much more goal oriented that I am, anymore.

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.