Tuesday, November 13, 2018

It's November again.



Every year Kath’s birthday is one I joyfully celebrate, but even this many years since her diagnosis, I still struggle with. Sorry if you have heard this before and I sound like a broken record. Maybe if I write it out enough times it will stop taking my breath away.

I am blessed she is here. She almost wasn’t.

The day of her birth was one I remember well, waiting around for the time to leave the house and drive to the hospital; she was a scheduled induction. When it was finally time to leave, off we went. During the delivery I remember a time when I started to look at everyone and everything as if they were all far away. Roger didn’t notice anything was amiss, but I still remember the eyes of the nurse as she realized things were going sideways. My blood pressure was dropping, Kath was coming out face down and I felt like I suddenly had a choice to make. I made the effort to swim back towards the pain, my baby, my life. Sounds overly dramatic, doesn’t it? But to me it has always felt like a very pivotal moment. And I have never taken it for granted.

When she was a baby, Kath was the easy baby. She didn’t reach and grab things while I ate or cooked or shopped. She was on my hip more than any of the other kids, she always wanted me to hold her -and it often truly had to be me that held her or she would be very upset-, otherwise she was smiley and happy.

Months before her 1st birthday I remember looking at my other children’s first calendars- the ones that you record milestones in. Kath was missing lots of milestones, but every child grows at different rates, I wasn't too worried. I figured it was because she was on my hip so much. I figured it was because she had older siblings who did everything for her. I made lots of excuses. But as time went on...as her oldest brother went to study in Nicaragua and her other brother went to college in Rochester...it became more obvious that something was wrong. At her first annual appointment, our pediatrician said that although she didn't see anything amiss, she trusted her parents. County Early Intervention therapists soon came to the house to evaluate Kath and before they left the porch, they said she needed intervention, although they didn’t know why. Three months later Kath was diagnosed having survived a massive in utero stroke.

My heart has never returned to its normal beating. And every year around her birthday it gets even more erratic before it settles back down. Some of my friends, those who have children with disabilities mostly, understand, but I think most others, including some considered closest to me, think it’s just my “November” mood.

Despite knowing logically that Kath’s stroke was not my fault, I am guilt-filled anyway. I couldn’t protect my girl...when she needed it most...when she was in my body. How basic is that?

When Kath was about two years-old, she stopped me from reading one night and said, “I am glad I stayed.” I asked her what she meant. She told me that she remembered when she was in my belly, then she remembered having a good time playing somewhere, but she heard me call, heard me ask her to stay with me, not to leave, so she decided to stay. The wild thing about all of this is that one day while I was pregnant, I didn’t feel the baby move and I had a bad feeling. I drove myself to my doctor's office and the nurse couldn’t find the baby’s heartbeat or register movement either. She left the room to get cold water to help make the baby more active, but when the nurse left, I had a bad- bad feeling. I started rubbing my belly and begging my unborn baby to “Stay with me. Don’t leave me.” I didn’t tell anyone that because ...well, it sounded crazy...but Kath apparently heard me. And she stayed.



So, every November I celebrate and I struggle. I celebrate the brave-little-engine-that-could girl who was gifted to me and I struggle with the inexplicable other components of guilt, of what-ifs, of having dodged a soul-crushing-grief bullet. I always strive to be that upbeat embracer of Good and Hope and Light, but there is also that part of me that knows that if I don’t give myself time to breathe through these moments, to let them be felt and then to let them go... they will fester and decay my innards, my heart and my soul. Luckily for me this is the month of writing (National Novel Writing Month) so I get to release my thoughts on paper and try to write though all of these emotions. Most years I see progress. It might be easier if it didn’t get dark so early, but she stayed and for that I will always feel blessed. Happy birthday to my beautiful Katharina.