Sunday, November 13, 2011

This November has light. Happy birthday to my gift.

Every November for as long as I can remember, I struggle. I think it's Seasonal Depression. The dark has always bothered me. I don't like to go out in the dark and if I come home in the dark I want LOTS of lights on. If I go shopping I park under the lights. I can't camp anymore, I used to, but no more. I have nightlights, allegedly for my daughters....I love summer and sunlight, but even in the summer I struggle with the dark edges of my front porch. I have issues, I know!

Five years ago one of the lights of my life came into my world in November. We didn't know at the time but Kath had already fought so hard to get to us. She had a stroke before she was born. The oxygen shut off. She stroked. The oxygen came back on and she continued to fight to reach us. Then during her delivery my blood pressure dropped dangerously low. I felt a floating away sensation as she was struggling just to be born. She had her umbilical cord wrapped around her neck, she was face down and there was merconian fluid. She came out silently while I was fighting back from through my comfortable haze of disconnect while my blood pressure normalized. Then we both thunked into reality.

Amidst the chaotic life of a family already in motion Kath easily went along with the flow. She stayed still in the middle of the floor and watched us all buzz around her. She smiled.

Chris packed up and prepared for a semester in Nicaragua. Nick packed up and prepared to be a freshman in college. Alex danced through her days.

Kath was a hip baby. She didn't crawl or walk. Why should she? There was always someone moving her to catch her up with the lives in progress around her.

Kath didn't talk. Why should she? She had a big sister who anticipated her every need...and talked enough for the two of them.

Then as life will often do, especially if you ignore it enough, it all came to a grinding halt. Not a screeching, noisy halt, but an eerily silent halt. Just as when she came into the world.

It started with a fear. Small and insinuating, then growing to near suffocating.

What possibly could be wrong? Kath was missing all of the milestones. The ones she should have hit without thinking and working on too hard. All of them.

November, a year after she was born, was when Roger and I took her to the pediatrician and explained my fears. The testing began soon after. I traveled to Nicaragua that month to visit with Chris for Thanksgiving while he struggled abroad.

Lots of dark.

By February we had a bunch of new people in our lives. We knew what acronyms like PT and OT meant and we had faces to fit those letters. We had our own people. We had a team. We also had a neurologist. A speech therapist A special education therapist. A teacher for the visually impaired. It was a year of learning how to stay afloat while new waves threatened each day as we saw how much Kath struggled with...everything. Including swallowing. We lived in a state-of-being known by most special needs families as "Holland."

Kath went through many phases. Some 'normal' kid phases, but many just 'off' enough and difficult enough to make me feel like we were living in a different country with different rituals, with different references, with different life goals, like, Holland. Since Kath struggled with transitions-being around people was difficult and very challenging. Playdates. Church. Shopping. Parties. Park. These were all parts of others peoples' days that were normal. Kath was so far behind her peers that it was too painful to socialize. People insisted on approaching her quickly, loudly and often peripherally (she can't see peripherally), touching her and absorbing her with their eyes. She'd jump, cry, flip out. They took it as a personal rejection and left her, sometimes paid attention to her sister, but often not coming back around to try a second time with Kath. So she'd sit and watch on my lap or hip, left out. But even the attention to Alex waned as people seemed to fear that we were 'catchy.'

For a long time I blurted to anyone within shouting distance, 'My baby had a stroke!' As if repeating it would help me heal. As if I could find someone who could possibly understand the shaky unknown of our diagnosis. As if I could say it enough to relieve the pressure so I wouldn't implode.

I threw myself into doing things with and for Alex so she wouldn't one day resent it all since most of the attention was not ever on her.  I started a Girl Scout Troop. I surrounded us with moms and girls I thought were safe and would be understanding and supportive as we all embarked on this raising of our daughters together. I signed her up and coached two seasons of soccer.

Meanwhile Kath worked hard but was showing signs of struggling in her special education school. Her teacher wrote things like "staff is struggling with how to deal with Kath." We threw around the idea of selling the house, moving and homeschooling.

When November swung around again, this time it was my other son Nick struggling; he was finally diagnosed with Post Concussive Syndrome.

Every plate that was supposed to be spinning seemed chipped and shaky.

Then suddenly things began to unlodge from the STUCK position.

Like a chest cold you have forever, it makes you cough, bone weary tired and it makes it difficult for you to breathe, but then as time heals you-- you realize you are coughing less, sleeping better and breathing more deeply---things began to improve.

Not before several things flung themselves completely into the ether though. I'm no longer the leader of the troop I began. The moms decided their daughters needed more than I could give, needed consistency. I was lucky I was breathing, they understandably needed something else, their path is very different from ours. I understand, I used to live there, once upon a time, too. I stopped coaching soccer, Alex was too sick all the time, I coached other people's kids more than my own daughter who was home sick more often than on the field. One close friend and one family member moved on.

But this November has been lighter than any I remember in a long time, except for when maybe I was a kid. It has been warmer too. Lots of sunshine. The colors of the leaves and sky are brilliant. Even my yellow mums seem to be lit from within. I have started an Odyssey of the Mind team; individually registered my girls for Girl Scouts (and talked to another former GS leader who had similar issues who wants to do joint projects with my girls and her girls, our own little group); the girls are taking religion classes (Alex makes her First Reconciliation this weekend); and we are looking into joining 4H.

I look forward to snuggling, reading and putting the girls to bed. Nick is working towards his own recoup. Chris is working full-time and going to grad school full-time. Roger and I are both writing again. This November has been filled with light and hope and understanding and peace.

Yes, our lives are still chaotic and filled to the brim, but our November Light is singing the ABCs, drawing story pictures, 'writing' notes, making up stories, dancing.

Kath has helped to show us that all darkness is temporary. Darkness is sometimes a rest before the light. A time to catch your breath before the light comes back. It is not always to be feared. It's a time for honest reflection, priorities. Even before the brilliant sunrises we have helps highlight those beautiful sunrises. After storms,we have rainbows.

This November we have sunrises and rainbows. It's a different light than before. Everything is slightly different. The pacing is different. The priorities are different.

And we have our beautiful and amazing Katharina. Our gift who worked so hard to reach us and who has shown us the true meaning of resiliency, hope and breathing in the little moments.

Happy birthday to my gift. These 5 years have truly been a wonderful gift. Thank you.

1 comment:

Anonymous said...

Happy Birthday to Kath. A beautifully written tribute filled with so much honesty I am weeping as I type. A few lines went deep: "It started with a fear. Small and insinuating, then growing to near suffocating."

How I remember that exactly. And the acronyms, the specialists. Nearly 19 years later and your words brought it all back. Yes, our Holland tour guides are our gifts. I must admit I would trade it all for a world of shallow easiness, but that is not an option. Thank you for sharing your heart and words. And again, Happy Birthday to your beautiful bang-trimming girl! And I am not really anonymous, I just don't know how to sign in any other way...Linda Davis.