Monday, May 26, 2008

My Child's Hand by Annette Brennan

My child's hand

My child's hand stays tightly closed
to hide a secret this...

The treasure that
she holds so close,
a precious angel's kiss.

She holds on very tightly
so the feeling won't slip away.

Of the goodbye kiss
the angel gave
as she sent her to me that day.

Once in a while
she opens her hand
and takes a peek inside.

At the secret place
the world can't see,
where her precious treasure hides.

And so, I will forgive you,
for you know not what you see,

When you look at my child's
little fisted hand,

That holds a precious secret,
an angel, my child and me.

Annette Brennan

This is a poem one of the mom's from the list serve wrote and it makes me cry each time I read it. Roger and I have talked about how Kath chose us, we believe all children choose their family, and so this is even more special for me/us.


4 Day Weekend

We both have a four day weekend. Roger had off from school Friday and I have off Tuesday (because of job sharing, my school actually does return Tuesday).

This weekend has been spent with us trying to regain control of the house and yard. A handle on life again. I feel like we have been living in crisis mode. I am not trying to complain when I write this and oftentimes I stop myself from writing some things because I don't want pity or anyone to read into the situation incorrectly. And I think I might sound pathetic. However, if I am to keep true with helping a future mom going through this then dear family and friends you will have to deal with my writing about things that might make you feel less comfortable.

Crisis mode. I remember having trouble this past summer. My brain felt unfocused and interrupted, if that makes any sense.
I always had a baby on my hip, a three year-old yacking my ear off, as I prepared to send one son off to Nicaragua and one to be a freshman at a university 4 hours away (takes me 5). Poor Kath didn't stand a chance. She was quiet. I thought she was just watching and sponging eveything in. I considered her quiet and contemplative like her father. I figured she didn't crawl or reach for anything because everything was provided for her and she was marching to her own drum. I struggled just to get anything done. Housework, cooking, yardwork and then when school began schoowork. She wouldn't let me really put her down, although when I did, she wouldn't move. She wouldn't reach out for anything around. Everyone grows differently, I thought.

Then she pushed away from breastfeeding. She seemed to be becoming more introverted and it seemed as though she regressed. She no longer made certain sounds, there wasn't any progress with me working on the normal activities with her.

Chris was in a foreign country. I spoke to him every night. Nick was absorbed in a different world and very busy; was I doing enough for him, being supportive? Alex was a whirlwind of growth and activity. Roger was overwhelemd with school. Kath was still quiet and immobile. I tried to juggle and kept dropping things.

Then the whirlwind of a ped appointment, an early intervention evaluation, Christmas, visiting Nicaragua myself, and all the busy day to day stuff. And what to make for dinner? The regular stuff doesn't go away. Did I mention the Kath yell/scream? She has this piercing scream that forces you to run before you even know you are running.

As the mom, I felt I was sinking beneath the weight of trying to keep the house up, the activities going, all of the kids going, Roger, my career, bills and so on. And my sanity.

Then in January, Kath began physical therapy. When she began, she wouldn't move that hand well, reach for a toy or try to get to a toy. Slowly she began to move and reach and grab and play. She actually started to play! She didn't just sit there. She played with toys, moved them around. Wow, how did I miss that from occuring? Ok, maybe she did play before, but this was different. She was engaged and working muscles.

February the other shoe dropped, as the saying goes. The neurologist said 'autism' or 'cp.' I knew next to nothing about either. I actually though autism was a better diagnosis. MRI and wham 'Cerebral Palsy brought on by a stroke.' A STROKE? Are you kidding me? If you could have peered inside my body I am sure there were bruises. They just didn't register on my skin, it was my heart bleeding out.

I distinctly remember, during what could have been my second trimester, substituting for another teacher in a Life Skills class and feeling nauseaus. I thought, "How would I deal with this?" I felt I wasn't really mentally ready for child number four and I definately could not handle a child with so many needs.

But there I was. Here I am. As I said before, Chris looked it up on wickipedia. He emailed me a list of accomplished people who had this. Ok, great. She can live a life outside. But then how do we get to that point?

I went into research and mourn mode. To family and friends this sounds horrible. Why would you mourn someone who is alive and laughing in your arms? Because my nice little idea of Life was over. I wasn't ready for number 4, but number 4 wasn't going to stay quietly on the side. She was actually going to be the focus. No sidelines. (This sounds horrible. NONE of my children are sidelines--I mean I couldn't treat her evenly and equally, she obviously would need more and she would not learn things just by watching . . . .This is something I don't think anyone who doesn't have a special needs child can understand.)

I mourned the idea of what my daughter would do with her space in this world. I mourned for her and Alex being best buddies and taking me shopping and rolling their eyes at my clothing choices. I mourned that she wouldn't be a wife and mother. I mourned that others wouldn't see her heart, but only her tight fist and whatever else she would have 'wrong.' (Since these orginal thoughts I see things differently, she will be amazing and I expect grandkids in 30 years!)

I couldn't talk to anyone about this. Roger did his best to swallow everything and the first weekend when I hermit-tized, he took the phone calls and dealt with the outside world. I cocooned and tried to fix it, maybe they were wrong . . . .

But the more I researched, the more I knew the diagnosis was right. Yes, she has what is considered a minor case. Some people who don't know, can't 'see' it. They think she is quiet and since she is petite they just think she is 'not there yet.' I get the idea many people think I am exaggerating. Her brain is affected, we can't see that. Most things that are a reflex for others must be learned by Kath. And that learning is hard, hard, hard work.

Once again, I am not writing this to make anyone feel badly or gather pity. I am writing this for me and anyone who might feel like they are on the oustide looking in.

All of my focus is as a mom. Research, implement. Doing my own PT, OT and Speech. Everything is around her schedule. And Alex fits in nicely and I make sure she gets time and attention. I make sure I am in constant contact with the boys. I try to be a support for Roger. But sometimes I feel adrift and alone. Except when I read the list-serve or I talk to a mom who has been there. Then I feel a connection and bond with other mothers. They undestand the weariness of always being 'on.'

The doctor appointments. Limited time with a professional to ask the questions that poke up in the middle of the night. Therapies 4 days a week (with OT and hippotherapy starting soon to add to it). Keeping it all straight.

And trying to keep everyone else straight. And bills. And cleaning. And shopping. And anything else that pops up--like Rogers' accident, my grandfather in the hospital, my father sick, a cesspool that gave up, oh and a career.

This weekend was not spent bar-b-queing with friends for us. We spent it trying to catch up. Living in crisis means you don't clean, you shuffle stuff so you have room on the couch to sit. You wash clothes because you don't have clean underwear. Then you pile it instead of putting it away. You buy easy to cook meals that may not be the healthiest, but everyone has a full tummy (then you feel guilt because--what if glutton is stopping Kath from some brain activity?).

Living in crisis is putting out fires. Not planning. And no one should stay there for an extended period of time. It is too hard to maintain and crazy.

But how to get out of it?

I don't know. I am amazed because we have had help from sources I didn't expect. My neighbor who has stepped in as a surrogate mom, grandma (not to make her feel old, but she makes Alex feel so secure and treasured) and best friend. As well as a few other things. When I was hanging on by a fingernail, she called, emailed and came over. And listened. And asked questions. And listened. Thank you Maddy for being such an angel.

And the girls' nanny (babysitter makes her sound like she is 15 and she does so much more!) is terrific too. She has taken on Kath's diagnosis with incredible patience and strength. She could easily have said--I can't do this, I have enough on my plate (and she does), but she is right there besides me each week taking care of the therapies I miss while I am at work and showing me what works for her. Thank you Robin.

I am blessed with angels who have held me when I cried; laughed and clapped when things are excellent; and have listened when I just needed to vent. And other angels like Ellen at school who ask me every day, how are you? Thank you Ellen.

And Janine and Karen help by giving Alex special time and having us over for a wonderful brunch where there were no expectations and I could drink a mamosa!

Our families are so very far away so we don't get any 'breaks' from grandparents to recharge our batteries or even just have a conversation uninterrupted. These angels help me breath in their actions of kindness.

So this is very long. Yes. Somedays are like that. And we are having a great weekend. Mowing. Shampooing rugs. Scrubbing tubs and toilets. Dusting. Paying bills. Writing. Reading. Playing.

It is almost like we are truly coming out of crisis mode and starting to get back to regular old life. Yes, a life that is very different from the life we had a year ago and imagined we would have at this point. But hey, I cleaned a toilet, life is good.

Friday, May 23, 2008

Busy Busy Busy

Hello all.
With the end of the year cascading down on us, as well as the drama of daily life, I have been too busy to write. Sadly that means my writing as well as the blog. It has been great though this month since I have been the 'goal keeper' for the writing group I belong to, so although I have not written any new stuff, I feel I kept my fingers twitching in the writing world anyway. I am dying to check out some new crits on a rework of a chapter I did, but will fulfill my duty with the blog first. :-)

Last Saturday, Alex, Kath and I drove to East Berne, a far, far away land, in search of a horse therapy place that a fellow teacher's neice owns and works. It took us about an hour since I was a little mixed up on the directions. But when we drove down the dirt driveway and I told the girls we were at the 'horse farm' they were more thrilled than when we began the trip. When Kath saw the horses her eyes lit up and she was so brave. While Alex got the shakes, Kath had no fear. She actually went to Liz without a thought (see ya mom!) and she pet the horse and was just so thrilled. Alex did pet the horse's neck and loved them too, but wow! Those heads are pretty darn big! Especially from below!

We are going to begin therapy soon--my schedule and Liz's schedule need to coincide and insurance should pick up the majority of the bill. Alex can attend a sibling class for half price and she is thrilled! We are looking forward to this therapy because Kath loves animals and she seems to be at such a pivitol period of growth and we want to try everything to give her the best opportunities. We ahve heard nothing but great things about hippotherapy.

After that we checked out the Y for swimming and we may purchase a membership to work on the pool activities and our own form of water therapy. Plus it might be good for Rog and I to get some weight training in before I lose all of my muscle.

Sunday we went to Aunt Janine's and Bob's for brunch and we had a great break--more later.

Tuesday Kath met Dr Simon, the othamologist. He did his exam, including dialating her pupils and did not see anything scary. He said he did not believe she had a vision cut (blindness) in her vision, but he couldn't rule it out until she was older and could answer questions. He was quite pleased with what I explained was her progress and he said, 'give her lots of hugs, keep up what you are doing and see you in a year.' We'll see if I stay away that long, but for now I am pleased since she has been using more peripheral viewing, but she still turns her whole head most of the time. But she can see peripherally. Good sign.

Today we visited with Dr. Schottler-Thal and we had a great visit. Kath's weight has increased, as did her head size (but not scary-like). She is still a short thing, but we call it petite. Dr. Schottler-Thal is encouraged and impressed with all of Kath's progress as well. Kath had one shot and will return in Novemeber for her two year check up (yeah, wouldn't it be nice NOT to be up ther before that--but we all know we will be). Daddy was able to be with us for this appointment since his school did not have classes, but I had to leave mine early since mine did. Oh, and we will also be having her hearing checked as per Liz her speech therapists recommendation. Dr Schottler-Thal also found a 'benign heart murmur.' All of the children have had them and each time it has unsettled me dramatically--and Nick saying, "Oh yeah. Did I ever tell you when I went for my physical for track this year, they found I ahd mine back again?" did not help. oy.

On Tuesday we meet up with Dr Foster, the neurologist again. I will be bringing my notebook with my questions and try to figure out what her chances are of another stroke, of seizures, obtaining a developmental ped, and an assorted vairiety of other questions. :-)

I will try to write more tomorrow about the fun things everyone is up to--did I tell you to check out Chris is on the front web page! Nick is on a frisbee team here. Alex is suddenly a little 15 year old--ask Nick. He is flabbergasted. Kath has started to take off her diaper and bop, hop and practically run away laughing. The insanity continues. :-)

Good night-I will edit later too. Sorry about any errors.

Thursday, May 15, 2008


Today Katharina took her swallow test.

Last night I packed up pasta, yogurt, chicken and crackers to take with us. I worked for half the day, came home and Kath and I took off for Albany Med and Robin took care of Alex. We arrived early at Albany Med so we played and practiced walking. Kath loves her freedom! When we were called in Kath had to sit in a car-seat-like chair. The nurse buckled her in and had already mixed her food with the barium. After making sure the machine was set to take the x-rays, we began to feed Kath the barium-laced items. She ate them. She even had white powder around her mouth (my little slob) but she ate what was given her. I was able to watch the x-ray picture of her chewing and swallowing. That was amazing. The chewing, chewing, chewing and the whosh of the swallow down her throat! Wow.

Anyway. (smile)

The nurse told me that Kath looked fine. She did notice a couple of times when Kath's food began to be misdirected but that she was able to self correct and it went down the right pipe. (I don't know how that works and I don't know how exactly she is able to self correct. That is my word too.)She also said that Kath showed to be chewing diagnolly and rotationally(?) and that was wonderful. She seems to be learning the necessary skills to avoid aspirating even though she does kind of pocket some food (possibly) in her cheek. All in all, she passed with glowing comments and reports will be sent to Dr Foster (neuro); Dr Schottler-Thal (ped); Sue (PT); and Liz (speech) as well one to me.

Whew. Next week is the eye specialist. And possibly Dr Schottler-Thal.

Good night all!

Wednesday, May 14, 2008

Chris is on the Benny Web Page!

Just another quick one!
Check out Chris is on the webpage cover!
We are so proud of you!

Tuesday, May 13, 2008

Can you believe he is 19?

Eish. Short but sweet. Nick turned 19 yesterday. Holy cow. How did I get this old and how on Earth did HE???

We spent the day packing and driving. But at least he is home now. Ha. He is already out and about with friends.

Sunday, May 11, 2008

Happy Mother's Day

So, things have quieted some on the tsumami front. :-) Visited Grandpa and Aunt Eileen on LI Saturday, saw John, Carol and Dad too. Poor grandpa is so bruised he looks like he should be in intense discomfort, he says he is not.

Apparently the young adult world went crazy last weekend because Carol's brother was beaten and kicked in the head. All forms of pre-judging need to stop before our young really do kill one another. At school, the anger against me and my doses of tolerance have subsided. Maybe I made sense afterall? I can only hope and pray.

On the home front. After a day of travel yesterday, today was quiet. The girls, Roger and I spent the day around the house mostly. Alex was so excited--she just kept saying, "Happy Mother's Day everyone!!!" She is so full of life and excitement, she is infectious.

Kath continues to astound and amaze. She is able to get herself everywhere with a combo of the illegal knee-hop, taking steps, holding onto objects and crabbing along, crawling and knee walking. She is quite the happy chickie. Most of the time. She has shown sneak peaks into the terrible twos a few times, but . . .she is usually quick to settle and get back to being adorable. :-)

Back to school work. Picking Nick up from Rochester this week. Yeah! Tomorrow is his birthday too--19!! Amazing!

Well, have a great night!

OH! Listened to a book on tape on the way home last night--Quantum Healing by Deepak Chopra. At first I thought, "What on earth is this??" But then I settled in and I really enjoyed it and I think I got a lot out of it. I am going to try to read the book when I get a few spare minutes. Thank you Doris!

Wednesday, May 7, 2008

Is it really only Wednesday?

Hello all.
Once again a huge tsunami of stuff. Some of which is not my place to discuss or reveal. What I can say is my grandfather is in the hospital after a fall. He broke his shoulder. My poor aunt has been spending days there and nights worrying. Our cesspool lietchfield (Sp) is in need of replacement. I didn't know one replaced that. Ahh, being a homeowner. I have had a couple of loud parents at my school up in arms about what they percieve as me teaching my 'liberal ideas' to their conservative children. I have gotten unbelievable support at school. I distracted my men from their finals when I told them about the hub-bub and Nick actually began his own blog (email him for the address until I ask him if I can link it here). My dear friend is going through a horrific nightmare. Roger is losing track of his mind (poor guy, I tell him he is the same as before, just noticing it since his head injury). There are a couple of other things which I do not feel at liberty to discuss here.

So, in light of all this craziness . . .Alex has been quite the little light. As she grows she shows her big heart more and more. Incredible patience with a sister who pulls her hair, hits her, rips her projects (all by accident or as she learns). Alex shares her toys and plays with her and cheers her on when she takes her steps.

Kath has continued to make progress with her walking. She tries so hard to get somewhere fast that she often seems to be flinging herself, but what a huge immprovement every day. She continues to use her right hand more and more. I totally credit Sue with the fact that Kath has started to walk and shows such huge strides everyday. Kath is very focused on learning and trying to keep up with her big sister. She has said, "ha" for 'hot'; "kkss" for 'Chris' and today she said "me." Liz has helped Kath so much with making the sounds and connections. Then we are also so lucky to have Robin, our nanny (that makes us sound rich, but 'babysitter'just doesn't do any justice to all that Robin does) because she also works so hard to keep Kath working while still being a normal kid.

Sunday we had Nick's telescope out. Kath somehow moved it and scraped Alex's foot. So we put a wash cloth on her foot and sat her on the couch. Then I got her new Strawberry Shortcake ice pack and put the washcloth aside. Kath signed 'sorry' then walked from the porch sliding doors to the picnic table in the livingroom, around it, picked up the discarded washcloth, continued to walk around the picnic table to where Alex was sitting on the couch. She put the washcloth on her foot, kissed her boo-boo and gave her hug. And said, "ohhhh." Very empathetic. Very sweet. Especially when you consider how difficult the 'walking' is for Kath, how long it all takes and how focused she was on getting to her sister.

Tuesday Alex was practicing ballet moves in the open area of our living room. Kath mimiced by putting her arms up above her head. Then when Alex moved 'off stage' Kath did her knee hop to the area and put her arms above her head again--she was doing ballet.

Well, I have much more to say, but a bit tired. Oh, we had the OT evaluation Tuesday. Kath was actually borderline! She automatically qualifies because of the stroke but she showed up as up to 17 months--which is in normal range (next week she will be 18 months). But we want to work on her being able to use her right hand and being able to cross her right hnd across her body.

Hope all is good and I hope you enjoy the pictures. More of them will be posted, just running on steam.

Sunday, May 4, 2008

great week!

Since it is 11:19 when I am starting this AND I haven't yet opened my school bag . . .I am in trouble tomorrow. Ugh.

But I have to tell you. We have counted Kath up to 9 steps. She is very excited and still claps for herself and smiles a mile wide whenever she takes her steps. She teeters precariously but she does not stop trying. Even on the tile floors, which ouchily seems to be her favorite place to try to walk.

She is using her right hand so much now that it is much, much, more than a helper hand. Not quite to the same strength as her left, but seems to be progressing quite well.

She is playing more on her own, making voices to the Little People she plays with and gives great hugs and kisses.

She uses sign language and grunts to get her point across so well that Alex and I are pretty good at understanding 98 % of what she wants and daddy is right behind us.

Alex has turned into a Big Girl 4. She tells me things like, "I can take care of that. I am 4 now." And a few other goodies I will write about during the week. She is amazing and helpful and so very very smart. We are still talking about the idea of homeschooling.

The girls and I drove to Vermont Sat and visited Chris for Parent Weekend. He played a soccer game and we went out to dinner with his old roomate and his mom. It was a great, albiet, cold day!

Nick ran at States for college Friday. For a freshman he is doing amazing. Not sure how excited he is to come home, so much to do and going on all the time there, but I can't wait to pick him up the 14th.

Roger's two college classes ended Sat. Not a moment too soon. I have reached the stressed-out wall and am glad to have another adult around here. :-)

I am behind in everything. Aggg. One cool thing for me is that I am the "May Goals Keeper" for the Writing Forum I belong to. So I am in touch with people from all over the world about cool stuff like writing. Not just the great support stuff for the hemi-plagia stuff for Kath. A little something for me. Now if I could actually get focused and get past chapter 3 in my story!!!

Gotta run and either sleep or get some school work done--after I switch the wash. Need clean clothes for tomorrow.

PS Pictures are in getting developed, so peek back soon for updated pics!