Tuesday, November 11, 2014

Stay With Me

I was reading an article on my front porch this morning and it made me sob. November is always tough for me. It used to be that I struggled with this month because it is a light-less month. It feels suffocating to be in the dark so long.

It’s also a month where I start to feel overwhelmed by school work, by the needs of my students, the needs of my family, the lack of time for me. I had to cancel pamper time (I planned at the beginning of summer) for me yesterday because I couldn’t be two places at once. I needed to be somewhere for Alex.

But now it’s also a month where I relive some of the most challenging times of my life.

Kath’s birth day. And the year before and the year after.

The year surrounding her birth was one of my most difficult. My son Nick had an accident the previous February in physical education class that landed him with a Traumatic Brain Injury diagnosis and 4 days in the hospital, 3 of them in ICU. It put the brakes on the life he had been flowing with; he has struggled to come back up to a place he feels he belongs and can get foothold to move forward.

I remember when I was pregnant with Kath and I prayed, as I stepped in to watch a class for a special education class for a few minutes, that I would never have a ‘special ed’ child-- I was so wrapped up in worry about not being able to help Nick; watching as my other son Chris was moving on in college-- and I knew I could never handle what these women, these moms of kids with disabilities, dealt with every day. This stuff, this life I was in, was hard enough.

It was a soul exhausting time and I remember that first night of Kath’s life. I sat crying because it hurt to get up and down with her but I was afraid to fall asleep with her in the hospital bed. Roger had gone home to be with my other daughter Alex and to work on school work. I questioned myself and being able to handle what I had already and now there was someone new who needed me even more. I know now most of this was postpartum, but at the time, I knew how to behave and answer questions to the nurses so as not to raise eye brows. I was ashamed, what kind of mother has these thoughts?

I lay in the dark watching the nurses come and go and I felt trapped. It wasn’t just about not being able to get up and down without pain. It was about my body being stretched out of shape, again. It was about my nipples hurting so much from nursing attempts. It was about putting the hard-fought career I had been building on hold, again. It was knowing that my writing would again take a back seat to my care and love of this new little one.

A woman’s life changes in so many shallow and deep ways. I knew that my breaths would be for someone else. Yet, one more piece of my heart was now on the outside of my body. I don’t think men feel it that deeply.

I lay there feeling selfish, unworthy and very much alone. How dare I be a mom of this miracle, I had this beautiful perfect baby, and all I could think about was what was going to shift in my life?

I’ve tried to tell others but my thoughts always felt ‘wrong’ to share.

We brought her home. My husband named her. My one contribution of her name was making sure there was the “h” in her name (Katharina) and it is the part that is mostly silenced or left out by others. 

Everything changed for me. Child four. I held her and she pushed me away. I tried to nurse her and she pushed me away. She’d stare at me and behind me. She’d smile above my head and I said she saw her angels. But I felt alone.

I took care of everyone. But didn’t take care of anyone. I couldn’t get it all balanced. I put her on my hips and ran after Alex. I put her on my hip and cooked meals for everyone. I put her on my hip and sang to her and danced with her as I drove around trying to keep my head together going to the other kids' events.

My love for her was as deep as with my other children but it also moved me onto another path, a path where I was alone. None of my friends were having babies, except one friend who lost her baby during her second trimester; being around me after that was too painful. I am an 'older' mom. My husband has his career and his own life shifts he was dealing with. When I struggle, I wrap myself up tighter, self-protection-mode. I am not easy to deal with.

There were mornings Kath smiled and my world lit up. And other mornings where she would not smile for anything, she would not reach her arms up for me, she didn’t want me, I thought.

A year after her birth I traveled to Nicaragua to visit my oldest knowing when I came back Kath would be going to start a string of specialists because through it all, I finally knew something was wrong. What made it so she was missing her milestones? I had my other kids’ baby books out and she was far outside their boundaries. I thought maybe she was on my hip too much. I put her down. She sat and watched us but wouldn’t move beyond swaying. If someone came near her she would startle and scream. No one wanted to hold her and I wouldn’t have let them anyway. Momma bear was rearing up.

When we saw her pediatrician in November she told us, “I am not worried yet, but I trust my parents,” and she set us up with Early Intervention therapists. They came and evaluated Kath in December and before they left they said she qualified for services and the plans started, she would start immediately.

Two weeks later, in January, Kath began Physical Therapy. Kath had started to learn that she couldn’t do certain things, like move her arm so Sue taught me how to show her to work around her brain and make memory paths in Kath’s through repetition.

At the end of January we met with a neurologist. He said it was either cerebral palsy or degenerative autism (or something, I don’t recall). I remember hearing ‘CP’ and knowing of two students in my school who were in wheelchairs, I was shaken to my core, deeply. We scheduled an MRI and waited. Fortunately there was a cancellation and two days later we got the call.

Katharina had survived a massive stroke during her second trimester that caused damage to both sides of brain but mostly her left occipital parietal lobe. It meant her vision was probably damaged, she would have cognitive and speech delays as well cerebral palsy on her right side.

This morning's article that made me sob lightly touched on what I felt at this point. I did what I could to live a healthy life, but I still couldn't prevent this or protect my daughter. I don’t do drugs. I don’t drink (I do drink more occasional glasses of wine now!). I exercised, somewhat. I took my vitamins, but somehow this had to be my fault. I didn’t keep her safe and healthy. I screwed something up…and then I remembered my secret prayer to God all those months ago, “Please don’t give me a child with special needs.”

I had done this. I had cursed her with this life because I was so selfish.

I know most of this sounds crazy and unreasonable to most who will read this. I know I didn’t do anything to cause her stroke, but sometimes these thoughts leak through my pores and spill out into my life.

A mother's world changes in ways a man will never know. A father may glimpse at it.

But it is usually a mother's world that shifts and must accommodate the fault lines.

I grieved intensely for a long time, for her and for me. I knew I wouldn’t go into any sort of leadership or consultant path now. I knew life would be a struggle for her.

When I look at old pictures I can see how my once open and bright eyes became distant, pushing the smiles. My husband and I dealt differently. Roger dealt by starting a second job. He was asleep by the time I got the girls to bed and was up and out before the house woke up. He was still taking classes, he stayed at school late. I dealt with the therapies, specialists and the day-to- day juggling act.

Two weeks after the diagnosis, while he was driving home during a snowstorm from an administration program he had started that fall, Roger answered my phone call. While telling me he was almost home, he flipped his car in a ditch. The last thing I heard was, “Oh no, hold on a sec.” then the phone went dead and I was standing on the stairs, with Kath in my arms and Alex nearby, screaming into the phone, begging him to answer me.

There are times I swear we can feel our brains shatter. Mine had done a good job trying to hold it all together, but it chugged to a halt that night and I felt a shift. Yet another one. This was one of self-preservation.

Roger needed 6 staples to his head. He refused to quit the second job, despite the anxiety I was in every single morning he left; despite how it was twisting our relationship; despite how it made me the one who shouldered all the decisions about Kath’s care, as well as Alex’s; however, that job is why we have been able to hang onto our home despite great financial challenges. But I felt more alone. I know he did too. We moved in parallel worlds.

He worked. I read lots of books, blogs, articles and I read… Kath.

Kath struggled with transitions so everything revolved around learning how to best teach her, how to make it so she could learn. The year before I returned full-time to teaching she had 13 therapies a week. I kept the therapies at home instead of at a school because that seemed to be best and the calmest place to center her.

I learned that she couldn’t see peripherally so I made sure I positioned her when holding her or standing near her that I blocked her so people couldn’t startle her when they seemed to come out of no where. I learned to warn her verbally about people coming up to her.

I learned that too much stimulation made it so she couldn’t figure out what to focus on; we stopped going to busy places, like Chuckie Cheese or the mall. We left events early if she seemed to get overwhelmed. Poor Alex had to leave too.

I learned how Kath’s balance could or would not compensate for other children, for different and uneven surfaces and for various lightening. My hands were always close enough to catch her or to at least make sure she wouldn’t break when she did.

I learned that she watched face expressions carefully and if she thought you were upset with her she would try to make you laugh. She was my Muppet’s Fozzie Bear. But she would take it to the point that one of her first teachers at a special education school thought she was misbehaving. This teacher then wouldn’t give Kath the positive smiles she sought, so Kath started to fear and hate school. Until she met her public school special education teacher, Mrs. Brown, that is.

I learned that she had swallowing issues that made nursing difficult, then later chewing and swallowing solid food. She pocketed food like a chipmunk and didn't know how to get it out of her mouth. We worked on teaching her and reminding her to swallow.

I learned that if she was not hydrated she would be challenging, if she ate too much sugar she would lose her mind, if she didn’t have enough protein she couldn’t pull herself back from the edge.

I learned that she hates having her arms immobile, held against me when nursing, even now she needs her arms out of the night blankets, she doesn't like to feel trapped.

I learned she didn’t lift her arms for me, or hug me, because she couldn’t.

I learned that other people have no patience for little kids, but they fear how to handle a child who has ‘issues.’

I learned that friends cannot always deal with difficulties and they move away from being with you because you are too heavy. Everything in your life is about what you are dealing with. And it should be because you are the one who has to give subtitles of Life to your little one. I also learned that sometimes they feel guilty about it so they make you hurt on their way out.

I learned that it is lonely being different from mainstream.

I learned that just as I have to teach Kath to be careful of others, I too can’t be too careful. I still share too much in my effort to understand my world, in my effort to make sure no one else ever feels as I did, in my attempts to make people understand her and me.

I learned I have to teach her where her weak spots are so I can also show her where her strengths are.

I learned I have to teach myself the same thing.

I learned that this wasn’t my fault. We had her blood tested and everything came back normal. We didn’t have my blood tested. So there is always the, “it could have been me” but I have also been told that it could have been the environment (whatever that means) and I have been told “sometimes these things happen.” But the guilt is there. Always, anyway.

The oxygen turned off while she was in my body. She had a massive stroke. The oxygen came back on. Unborn babies can have strokes, I never knew that. Another lesson.

When she was real small and I had started to try to explain her stroke to her she said, "I remember when I was in you. You told me to stay with you. And I did."

I never was on this shift, this journey, by myself after all. She is right there. And regardless of my guilt she loves me.

Maybe when she gets older and understands it better she might blame me for her shifts and struggles. But for this year I am getting better at forgiving myself. Or maybe I am just getting better at being okay with losing control of the plans I make. Maybe I am getting better with being okay with being alone sometimes and seeking out those who can handle me when I need them.

Maybe it is about the resiliency of reaching out, staying and proceeding calmly.

I’m still learning, and my girl teaches me every day. And she gives some of the best hugs.


Zan Marie said...

{{{{hugs}}}} You are an amazing mother, woman, and writer, Veronica.

Julie Steinberg said...

Am in tears...beautiful.it is lonely outside the mainstream...word like these make it easier to bear. Tx for sharing on chasa.

Diane M. Shampine said...

Veronica, your words are so heartbreaking but yet so true. I can relate and felt you were describing my life in some parts. Sharing these struggles with the outside world takes courage. I hope you know that your words are of inspiration not weakness. May you find healing through your writing and recognize your splendor.