Monday, September 22, 2008

I have been a horrible blogger--this one is long

I tend to be the kind of person who shuts down when my world goes crazy. Then afterward I blab to everyone all my revelations. I think I am at one of my revelation times.

Katharina has been showing remarkable progress. She is running--albiet a bit lopsided and a bit scary to watch--but running. I didn't think we would get here until December. If ever. She is recognizing pictures and objects and following simple directions. Considering there isn't much speech it has been difficult to know what she knows cognitively. As she sits on the floor and opens books and makes sounds while pointing to the pictures, I think--whew, maybe . . .she might be okay. Visually she seems to be speeding up a bit with her mental/visual tracking of objects. When she bounces a superball and it bounces into a bag, she can keep her eyes on it and follow it to find it--couldn't do that a couple of weeks ago. She points to purple things and says, pu-pl. However, she points to most other colors and says that too. White is also a fav. Ah, well. Alex painted Kath's right hand nails and Kath will show anyone her 'pretty hand' when asked. She watches Alex dance at ballet and then when we come home, she tries to swirl.

She makes incredible eye contact and she nods her head emphatically; you feel as though she may be trapped by her brain, but she is chiseling her way out. And she knows she will make it out.

She has a cold today, but that did not stop her from running around all day after waking up before 5AM to a sodden bed. Her nose is running a little slower than she is, but that has not stopped her from running to the pantry to feed Bucca as many cookies as she can before I stop her.

Alex is also sick, actually sicker. She has her speech evaluation tomorrow and I am hoping she feels amazingly better tomorrow. She woke me up this morning around 4AM to tell me (by breathing in my face) that she s-i-c-k. Thanks Al. She woke me a couple of days ago and I asked her for 5 more minutes (she gets quite the kick out of that). She said she had two things to tell me. Ok, baby, tell me in 5 minutes. After several attempts to wake me up I finally woke up and said, "Ok, honey. What are your two things?"

"Now I have 5." Then she proceeded to say them really fast, probably afraid I'd fall asleep sitting up. "1-See those trees? (pointing out the window) Don't they look like fairies? 2- I keep wishing for a magic wand, but I never get it. Why? 3- What should I be for Halloween? 4-What is your favorite star? Mine is a magic star so you can make a wish. 5-Why are there only two packages of banana oatmeal in a box (variety flavors)?" Need to be on my toes for this one! Alex drew a picture of me being tired. I have big dark brown circles under my eyes and my hair is wild. Hmmm. (baha!)I told you I have sleep issues!

She continues to impress me with her kindness and patience with Katharina. Kath will pull her hair, take her dolls, grab her cups and steal my lap. Alex will yell, but never hit Kath for yanking tufts of hair; she may pull the dolls out of Kath's hands, but never strikes her; Alex lets her drink from her cup and in turn drinks from her sister's; and Alex nudges her sister over so they both have room on my lap.

As for my brain. I think it is getting better. I came very close to going to the doctor, but decided to try vitamins, positive intentions and letting things go. I gave myself one week to feel something. I did. I have also lost about 11 pounds this summer. The letting go is not easy, but it is liberating, except the first thing I let go is the housework. So the house is a mess, but slowly I am feeling better. Robin made a comment today that I seemed 'brighter.' I feel brighter, more like myself.

It was last August when I began to have the nagging feelings of worry for Kath. I first thought we allowed her to get injured in the bouncey bounce we had for the boys' party. I thought her brain was damaged from the bouncey bounce and that it was my fault. Then I thought she had a brain tumor. She wouldn't play. I have never seen a child not play. She would sit and watch, but not explore. She didn't seem to even want to move. She stopped nursing.

Then once the early intervention began she started to spark. She is doing amazing things. I still worry that the stroke was my fault, but I can't do anything about it now. I sometimes pray it was my fault-- if that will mean she will not be susceptible to another one, as some of the kids are. We work with her everyday, with or without scheduled therapists, but she has therapy 2X on Monday, 2X on Tuesday, 2X on Thursday, sometimes 1X on Friday, and 1X on Saturday. This does not count the soial worker, doctor appointments and any therapy make-ups. Tomorrow I have to call Boston's Children's Hospital back to schedule an appointment for her there- we want to have her eyes and their cognitive connections evaluated.

The last year has been a rollercoaster and I know from the listserve that the ride ain't over yet, but what an amazing ride. I have met incredible people including my own family and friends who have shown a new dimension. Other parents from the retreat this summer-wow, what amazing people.

My husband gets up every morning between 1:30-2:30 AM every morning to work a second job for us. EVERY morning he does this before his real job (teaching) and on weekends. He never complains about it; I whine about the dishes. My sons and my daughter have shown the wonderful strengths of their hearts and transferred it out to new people they have met. Robin, Maddy, Janine and Karen have helped us keep our sanity as I have vented or just melted. My aunt and dad have helped us when we didn't know where else to turn. My friends at school ask and then listen. My wonderful administrators continue to allow me to job share so I can be home every other day. The great people on the listserve are voices in the dark helping me navigate these scary waters. The writer's forum is being so patient and not kicking me out even though I am way behind in crits. My awesome students, past and present, keep my eyes on the big picture. Lori and Donna, I know are just a phone call away, even if I don't speak to them for weeks/months. And the rest of our families who call and check in on us.

This past year has rocked me to my core. Rocked my faith. Forced me learn how to breathe again. Between Kath's diagnosis, Roger's accident, Nick's accidents, Chris' abroad experiences, I am on a different path than I was. I am a different path.

My marriage is stronger and more solid in ways I never imagined a year ago. I have faith, maybe not in any particulr religion, but in a God and the people I live here with. I look at the world a little differently and I prioritize my world differently than I did a year ago.

I hold my kids, husband and friends in true hugs of the heart. I breathe in the sunny days (still don't like the dark ones, but hey, I didn't say I was perfect!) and sit on the floor and play with the girls and Bucca. I read my own books, not just about Kath's stroke. I shut off the TV and talk to my Rog. I text Nick. I email Chris; I drive to see him play soccer whenever he lets me. I sing in the car.

I have a pack of blessings. Yes, my house is a complete disaster-we started projects like the breaking up of the sidewalk; the lawnmower tried to eat a rock and bit itself so our grass is reaching for the sky (yes, we still live here); there is always a pile of wash on the chair in the living room; Lucy doesn't always make it out in time; our basement likes the wet look. It is embarrassing that we have therapists come into our messy home, but . . . but! the oxygen turned back on and Kath lets me rock her and sing to her. She lets me touch and stroke her right arm and leg now. She says, "Momma. I uv ew." Kinda. Mostly she points to her eye, her heart and smiles big at me. Roger healed, Nick walked away from his accidents--even after a tramatic brain injury. Chris is going to Scotland in a couple of weeks to visit his girlfriend Abbi and I am sure this travel experience will be much more delightful than parts of Nicaragua. Alex snuggles and holds my hand and tells me I am so funny.

Life is great. That is my current revelation. And I think it is just as important to mark the great revelations as it is to tell of the tough swings.

1 comment:

Abbi said...

I think of you all often. Love to every one of you.