Friday, November 14, 2008

Today Miss Katharina turned 2.

Today is an amazing day. More than it was even a year ago.

Two years ago I had the worst labor of my 4. The scariest. Even now when I think back, it frightens me. My blood pressure dropped to 64-47 at one point and I felt so comfortable with the floating away I was doing, until I realized I wasn't ready to completely float and that a new little one counted on me to help her through what were were doing. They gave me oxygen and then Katharina nearly hanged herself on the cord because she proceeded so quickly down the birth canal. Then she arrive face up and silent.

Apparently as difficult as that day was. It was not even her hardest and it wasn't until last August that I began to even think something else had happened.

But at her one year exam I said, "Something is not right." Luckily I have a great doctor who said, "I am not worried, but I trust my parents." So, with Kath not even pulling herself up, truly reaching for objects, and a few other worries, we were evaluated by Early Intervention. (My apologies for you who are weary of this story--but this is my way of dealing.) After her evaluation, we knew she qualified. She began PT in January--first week. Sue (her PT) said that we seemed to have gotten to Kath just in time--she had been starting to 'give up.' For the first few weeks Kath did not reach for toys--we had to pick her hands up and bring them to the toys. We had to move her muscles through the motions, physically. But she did start to show memory permanence, for when Sue bought a garage with doors, Kath remembered from the previous session that cars go under the door. That was a fantastic sign, since we had no real idea what kind of brain damage she might have had. When she went for the MRI and the diagnosis was given of 'in utero stroke with Cerebral Palsy, possible language and visual issues'--I keyed in on the words I could--CP.

In the past year I have found that as bad as any form of CP is, Kath is pretty lucky. Yes, she runs like a drunken sailor-often bouncing off walls and yes, she struggles to use her right hand without it causing her more grief, but she does have use. She is not clenched and even when she is tight, I can usually massage her muscles out of it. She has mild CP.

It is the stroke part--the part I couldn't consider--that after all is an old person's ailment--that I have now had to reckon with. I have this idea that it is like some fault line that erupted and glitched her wiring. You could see her trying to dig her way out of her silence with her own version of sound repetition, sign language and incredible eye contact. You can see her watch Alex or another person/child do something and then when she gets a chance she is mimicking the action to the best of her ability. Today, when we were at the Pre-K I checked out for Alex, she watched other kids running pell-nell. At first she stayed wrapped around my hip. But I could see her eyes and I knew that she was eventually going to kick out (I think I still remember the FIRST time she did that!) and move me to put her down. She ran like them. Wild and crazy. She, however, has the balance of a drunken sailor, so watching her run takes courage. She falls A LOT. Not just down--but she can't stop herself at all so it is like watching a car stall and crash into a tree. EVERY TIME. The teachers of the program were painfully grimacing and flinching their oohing and ahhing as I seemingly just stood there watching my daughter face plant. Until I finally had no more courage and I picked her up and wouldn't ALLOW her to do it again.

The thing with stroke survivors is that--as most people know from adults--they have to do something over and over and over and over again. It hurts to watch. It hurts to have people think I am callous about the face plants my miracle does. But if I ever want her to be able to push through and succeed, then I have to learn to back up and let her fall. Don't worry, I did put her down to run again, I just needed to slow my heart and take a couple of inhales to stop my panic.

That is one reason it is easier to avoid people. I can allow Kath to try and work through things at home without people who really have no idea--putting in their unwarranted advise. But, I digress.

Kath has had an amazing year. She is a beautiful, smart, funny, energetic, stubborn little girl. It has be an incredible year. I never want to live it over again though. Thank you very much. It was one of the most draining years I had. The months surrounding Nick's accident were tough, but this was a whole year of hanging by my fingernails.

I feel as though my brain being wrapped in cotton has been a good thing. I don't think I could have dealt with it all, full force.

So today. The three of us went to the Round Church to check out the Pre-K program. Kath and I watched as Alex participated. Alex was quiet and shy-but had no real fear of being there or of interacting with anyone. She said she wants to go back, so that is a good sign. Although I asked her later in the day about her favorite part and she said she couldn't remember what they did in school at all. Looks like THAT starts all the way back in Pre-k. Alex also had speech therapy afterward and did well. She works VERY hard to do well by Kate. :-)

After that the girls and I decided to run to ToysRUs. We got Kath the Little People Garage--funny that was the first toy her PT brought over and now 10 months later she can move it, play with it and enjoy it. We had previously picked up some new Little People at Kohls. Alex got a sibling gift of the Little People Airplane-she has not let it out of her hands since it came out of the box. The girls played so long tonight I didn't realize how late it was! Daddy made dinner--vegetarian Shepherd's Pie. He also made an Angel Food cake for her candles. Aunt Eileen and Pepe called to sing (Aunt Eileen ALWAYS sings to whomever's b-day it is-big or little:)). Stacey, Kath's special ed therapist sent her an e-card and many of you sent her cards--which she loved and carried around for days.

More later. Tired for now. Take care.

1 comment:

Abbi said...

Happy Birthday to that darling girl of yours.