Ever hear of that? Yep, me neither. It is also known as Hand, Foot and Mouth disease, not to be confused with Hoof and Mouth because that is in cows, not children, silly! Oy.
Kath ran a fever Thursday night starting aroung 11:30. So, I called and brought her in on Friday (was 20 minutes late so I had to wait an hour for the next available opening AND I wasn't even seeing Kath's DOCTOR, but a physician's assistant, no, a nurse practitioner!) Anyway, both girls were stellar in their waiting skills while I was upset because I had to wake Kath up to bring her in to wait for an hour in a stew of germs. But it was my fault, I was late, so at least we were still able to have Kath checked out.
I don't really believe she has this virus though since she has shown no signs of blistering on her hands and feet. She tested negative for strep. She does have sores in her throat and now I think I do too. Darn girl grabs my glass and straw and I think "Hey, look! Remember when she didn't do any of that curiosity grabbing?? And look she can drink from a straw! Do you know hard that is? Her mouth is working!!!" Ugh. Anyway, I am hoping she is over this soon (and me too) and we can go back to regular old worrying.
Today she worked on climbing in and out of the back door. The first couple of attempts could have been disasterous if I had not jumped and held her (she was playing on the deck nicely one second so I was cleaning then wham she was in the house and trying to get back outside again.) Luckily, I was never more than 5 feet away, especially since I am not as fast as I was in high school. :-)
Alex is a wonderful first warning alarm system. It's either a loud 'MOM! Katharina is ... (doing any number of things from eating chalk to jumping out the door face first)' or 'Kath, that's a NO-NO! Yuck, Kath, that doesn't even taste good" (once again that is for anything ranging from the chalk to a dog-hair-covered pretzle stick or worse).
Today I want to talk about Alexandra. She is a pretty amazing chickie. She has gone from pretty much being the center (the boys are so much older and gone most of the time) of our attention to . . .well, not being the center. She has a bright sun-shiny smile and personality. She loves to tell stories, make people laugh, sing and dance. She is as smart as a whip (not sure where that expression came from, but you get the idea) and loves to learn and to help. A new passion of hers is yoga. I bought her a childrens yoga DVD and she sets herself up with my yoga mat and plops the DVD in and works on 'her yoga.' Then during the day she will show me her moves, with a very serious face (the DVD is called Silly to Calm Yoga) and very serious yoga breathing and calmness. She paints and draws something every day. She 'reads' to herself, to Kath, to me, to Roger.
Now, under normal circumstances an almost 4 year old (April 27th) may show signs of jealousy and meaness towards the sister who gets all the attention (therapists coming to the house, being told to be quiet "your sister is taking a nap" or "we have to go now your sister . . . ." )
But not Alex. Alex claps the loudest when Kath finally manages to get out the door by herself, when she colors a picture, when she stands for a long time, when she throws a ball, when she does anything at all Alex cheers for Katharina as if this baby didn't just cut the attention she gets from others down to squat. She reminds me of Stargirl in the YA novel called Stargirl by Jerry Spinelli. She is everyone's cheerleader, she sees no boundaries in making people happy. She laughs and makes others laugh. She cries when others feel bad. She makes pictures to make people happy. She truly thinks about other people's feelings and thoughts. She is an amazing girl. She tells us though when she needs a break "I need some mommy and Alex time" or "Daddy and Alex time" and we do everything we can to make sure that happens when she needs it because she deserves it too. She re-energizes me, so it is only fair that we re-energize her.
She began telling a story today about a woman from Coxsackie, but of course, she can't pronounce it correctly. That girl . . . she makes us laugh.
Saturday, April 12, 2008
Thursday, April 10, 2008
Full Catastrophe Life
In "Zorba the Greek", Zorba is asked if he's ever been married. His
response, (paraphrased by Jon Kabat-Zinn in his book "Full Catastrophe Living")
"Am I not a man? Of course I've been married. Wife, house,
kids, everything....the full catastrophe!"
From JKZ, "It was not meant to be a lament, nor does it mean that
being married or having children is a catastrophe. Zorba's response
embodies a supreme appreciation for the richness of life and the
inevitability of all its dilemmas, sorrows, tragedies, and ironies.
His way is to "dance" in the gale of the full catastrophe, to
celebrate life, to laugh with it and at himself, even in the face of
personal failure and defeat. In doing so, he is never weighed down
for long, never ultimately defeated either by the world or by his own
considerable folly.
"....ever since I first heard it, I have felt that the phrase "the
full catastrophe" captures something positive about the human spirit's
ability to come to grips with what is most difficult in life and to
find within it room to grow in strength and wisdom. For me, facing
the full catastrophe means finding and coming to terms with what is
most human in ourselves. There is not one person on the planet who
does not have his or her own version of the full catastrophe.
"Catastrophe here does not mean disaster. Rather it means the
poignant enormity of our life experience. It includes crisis and
disaster but also all the little things that go wrong and that add
up. The phrase reminds us that life is always in flux, that
everything we think is permanent is actually only temporary and
constantly changing. This includes our ideas, our opinions, our
relationships, our jobs, our possessions, our creations, our bodies,
everything."
My friend and fellow blogger Madelyn mentioned this phrase to me one day and I said, "That is great! I love it!" She gave me this quote and I really feel a connection to it. As I wrote last time, I know how good my life is, despite the many (MANY) issues we have had and have lately! I continue to try to figure all this out, much as I tried when Nick had his accident and we weren't sure what would happen with his brain. But I don't think I truly understood parts of what could have happened, or maybe I was just selective in what I could handle. I drove to the therapies and prayed he would heal, be fine. I prayed his memory would eventually work its way through. That mood swings would disappear. That he would not ever experience a head injury again--or at least for the 6 months the doctors shuddered at. But I always felt he would heal and be okay. I always felt as long as he did his exercises he would be good to go. He is young, afterall. Bad things don't happen to young healthy people.
Even with Roger's head injury--yup, we collect brain boo-boos here--I feel that as frustrating as it is, he WILL be okay. I tell him I see no difference--he was just as distracted and forgetful, yada, yada beforehand anyway! ;-D
This time is different. I have flashes of everything being okay. But I also have nasty reality checks. We have PT two times a week. Speech increases next week to two times a week. OT will be evaluated. Next month Kath will be tested to see if she is aspirating her food with a videoesophagram. She will have a visit to an eye specialist to see about her vision field cut; the neurologist to see how she is progressing; and her regular ped dr for normal progress checks and immunizations, and most likely a developmental ped to keep all the developing into perpspective, too. I think she will be fine, but I see 'fine' as different now. With Nick I figured he would eventually get back to normal. There is no normal here in Holland.
I am not trying to sadden any of you or make you think that my days are filled with a morbid sense of dread. God, no! How can anyone who hangs out with two gigglepusses like Kath and Alex have time for THAT!? But I am --especially when the house is quiet when everyone is asleep--trying to put everything into its folder in my brain. Sometimes I feel I have a brain injury since I struggle to figure it all out.
I think the hardest aspect for me to accept is that I cannot 'fix' this. I can't just try a differnt parenting strategy and voila everything is good. Why the hell not?! Hurumph. Instead I read. I write. I study the therapists. I contact other parents through the list-serve, talk to friends who have struggled too and I try to absorb everything and I try to make it part of my day in dealing with the CP portion of my goofball daughter. And I try to keep in mind that this chick who should be able to walk . . . doesn't know she should be able to do all this much easier than she is. She doesn't know that other kids don't have to reconstruct pathways in their brains to learn. That other children don't need the constant repetition and practice to get 'it'--regardless of whether the 'it' is a reflex or a learned action.
Not yet anyway.
So while she is young I can encourage and support and try to show her that giving up is not an option. That even though she will have to work much harder at ordinary life, she will have an extraordinary life.
This girl already survived a stroke!
So as I celebrate her pushing a doll stroller this week (by herself!) and at the same time I get angry and upset at how unfair it seems that she has to work so damn hard, I will try keep in mind in this full catastrophe life of the miracle that is before me. That Kath is not weighted down in her heart because she may be tripping and falling, she is jumping back up and celebrating her accomplishment of succeeding a 'today' activity! An activity that was harder, so much harder or out of reach, just yesterday! She stands up and dances--even when there isn't any music! This girl is celebrating her life.
As are we.
response, (paraphrased by Jon Kabat-Zinn in his book "Full Catastrophe Living")
"Am I not a man? Of course I've been married. Wife, house,
kids, everything....the full catastrophe!"
From JKZ, "It was not meant to be a lament, nor does it mean that
being married or having children is a catastrophe. Zorba's response
embodies a supreme appreciation for the richness of life and the
inevitability of all its dilemmas, sorrows, tragedies, and ironies.
His way is to "dance" in the gale of the full catastrophe, to
celebrate life, to laugh with it and at himself, even in the face of
personal failure and defeat. In doing so, he is never weighed down
for long, never ultimately defeated either by the world or by his own
considerable folly.
"....ever since I first heard it, I have felt that the phrase "the
full catastrophe" captures something positive about the human spirit's
ability to come to grips with what is most difficult in life and to
find within it room to grow in strength and wisdom. For me, facing
the full catastrophe means finding and coming to terms with what is
most human in ourselves. There is not one person on the planet who
does not have his or her own version of the full catastrophe.
"Catastrophe here does not mean disaster. Rather it means the
poignant enormity of our life experience. It includes crisis and
disaster but also all the little things that go wrong and that add
up. The phrase reminds us that life is always in flux, that
everything we think is permanent is actually only temporary and
constantly changing. This includes our ideas, our opinions, our
relationships, our jobs, our possessions, our creations, our bodies,
everything."
My friend and fellow blogger Madelyn mentioned this phrase to me one day and I said, "That is great! I love it!" She gave me this quote and I really feel a connection to it. As I wrote last time, I know how good my life is, despite the many (MANY) issues we have had and have lately! I continue to try to figure all this out, much as I tried when Nick had his accident and we weren't sure what would happen with his brain. But I don't think I truly understood parts of what could have happened, or maybe I was just selective in what I could handle. I drove to the therapies and prayed he would heal, be fine. I prayed his memory would eventually work its way through. That mood swings would disappear. That he would not ever experience a head injury again--or at least for the 6 months the doctors shuddered at. But I always felt he would heal and be okay. I always felt as long as he did his exercises he would be good to go. He is young, afterall. Bad things don't happen to young healthy people.
Even with Roger's head injury--yup, we collect brain boo-boos here--I feel that as frustrating as it is, he WILL be okay. I tell him I see no difference--he was just as distracted and forgetful, yada, yada beforehand anyway! ;-D
This time is different. I have flashes of everything being okay. But I also have nasty reality checks. We have PT two times a week. Speech increases next week to two times a week. OT will be evaluated. Next month Kath will be tested to see if she is aspirating her food with a videoesophagram. She will have a visit to an eye specialist to see about her vision field cut; the neurologist to see how she is progressing; and her regular ped dr for normal progress checks and immunizations, and most likely a developmental ped to keep all the developing into perpspective, too. I think she will be fine, but I see 'fine' as different now. With Nick I figured he would eventually get back to normal. There is no normal here in Holland.
I am not trying to sadden any of you or make you think that my days are filled with a morbid sense of dread. God, no! How can anyone who hangs out with two gigglepusses like Kath and Alex have time for THAT!? But I am --especially when the house is quiet when everyone is asleep--trying to put everything into its folder in my brain. Sometimes I feel I have a brain injury since I struggle to figure it all out.
I think the hardest aspect for me to accept is that I cannot 'fix' this. I can't just try a differnt parenting strategy and voila everything is good. Why the hell not?! Hurumph. Instead I read. I write. I study the therapists. I contact other parents through the list-serve, talk to friends who have struggled too and I try to absorb everything and I try to make it part of my day in dealing with the CP portion of my goofball daughter. And I try to keep in mind that this chick who should be able to walk . . . doesn't know she should be able to do all this much easier than she is. She doesn't know that other kids don't have to reconstruct pathways in their brains to learn. That other children don't need the constant repetition and practice to get 'it'--regardless of whether the 'it' is a reflex or a learned action.
Not yet anyway.
So while she is young I can encourage and support and try to show her that giving up is not an option. That even though she will have to work much harder at ordinary life, she will have an extraordinary life.
This girl already survived a stroke!
So as I celebrate her pushing a doll stroller this week (by herself!) and at the same time I get angry and upset at how unfair it seems that she has to work so damn hard, I will try keep in mind in this full catastrophe life of the miracle that is before me. That Kath is not weighted down in her heart because she may be tripping and falling, she is jumping back up and celebrating her accomplishment of succeeding a 'today' activity! An activity that was harder, so much harder or out of reach, just yesterday! She stands up and dances--even when there isn't any music! This girl is celebrating her life.
As are we.
Monday, April 7, 2008
The bad and the good
I am really glad that I didn't write on Friday. If I had I would not have had the 'and the good' part in my title. I was reading about a woman on the list serve (noted in sites I recommend on this page) and she was overwhelmed by emotion trying to deal with . . .this new way of 'life.' So I am not alone. But some days I feel so overwhelmed that I cannot take a deep breath, my shoulders feel like someone is pushing down on them, and I cry. Poor Robin. One second I am talking about something I read about, next second I am trying to breathe. An hour later in school, poor Lauren and Patty. After that no tears, just heaviness.
I know how lucky we are that things aren't worse. I know I am strong enough to be and do whatever Kath needs. I know Rog and I will make sure Kath will get what she needs -with help. But some days I just feel so sad that this journey is one Kath even needs to take. I never did drugs. I don't drink, smoke, or do anything dangerous--ask my boys-I am boring. Yet this happened and my beautiful Katharina will have to work so hard for the rest of her life just to do normal stuff.
She seems to have stopped saying 'mama.' Not sure why. Will ask Liz (speech therapist) tomorrow. Today Sue said Kath needs to stop knee bouncing to get places because she is loosening up her hip joints and that can cause other issues. My mother used to say, "stop taking your temperature every day" . . .little did she know, I would HAVE to do that for Kath to keep her on track.
This story/poem is one that my friend Donna told me about and I wanted to share it here.
"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I love this story/poem because I feel like it is okay-at least with others who go through this, to mourn what I thought I was going to have for Kath and for my family. I feel like it is okay for me to feel sad sometimes as long as I don't forget how wonderful my Holland is too.
That brings me to 'and the good.' There is such great joy in each accomplishment. She took a step! I thought for a second it might have been a falter, but when she plopped down, she took a second and then started to clap for herself. She was quite pleased. There have been no reenactments. I was the only one who saw it so according to Roger's mantra-It only happens if we BOTH see it--it didn't really occur. But . . . . :-) She is a very happy camper who absolutely adores her siblings--Chris was home this weekend and she loved having him around-if just to have one more body to practice her climbing on.
Well, more later. It is late and I still need to read for my classes tomorrow and well, this is long enough anyway!
Enjoy!
I know how lucky we are that things aren't worse. I know I am strong enough to be and do whatever Kath needs. I know Rog and I will make sure Kath will get what she needs -with help. But some days I just feel so sad that this journey is one Kath even needs to take. I never did drugs. I don't drink, smoke, or do anything dangerous--ask my boys-I am boring. Yet this happened and my beautiful Katharina will have to work so hard for the rest of her life just to do normal stuff.
She seems to have stopped saying 'mama.' Not sure why. Will ask Liz (speech therapist) tomorrow. Today Sue said Kath needs to stop knee bouncing to get places because she is loosening up her hip joints and that can cause other issues. My mother used to say, "stop taking your temperature every day" . . .little did she know, I would HAVE to do that for Kath to keep her on track.
This story/poem is one that my friend Donna told me about and I wanted to share it here.
"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I love this story/poem because I feel like it is okay-at least with others who go through this, to mourn what I thought I was going to have for Kath and for my family. I feel like it is okay for me to feel sad sometimes as long as I don't forget how wonderful my Holland is too.
That brings me to 'and the good.' There is such great joy in each accomplishment. She took a step! I thought for a second it might have been a falter, but when she plopped down, she took a second and then started to clap for herself. She was quite pleased. There have been no reenactments. I was the only one who saw it so according to Roger's mantra-It only happens if we BOTH see it--it didn't really occur. But . . . . :-) She is a very happy camper who absolutely adores her siblings--Chris was home this weekend and she loved having him around-if just to have one more body to practice her climbing on.
Well, more later. It is late and I still need to read for my classes tomorrow and well, this is long enough anyway!
Enjoy!
Wednesday, April 2, 2008
Two days in a row!
Hello all. Ok, Maybe there's two of you. :-) If you are new to blog reading--scroll to the bottom and then roll up. Or not. You may always go backwards in time, like Merlyn. :-)
After I wrote that part about Kath trying to throw herself off the picnic table?? Less than an hour later, she did JUST that and almost put her two front teeth through her bottom lip. Ah, the blood. Ah, the screaming. Ah, frustration. IF she could only make that hand go up to break her fall! I get the feeling that this chickie will have lots of boo-boos because she is so excited to be moving and groving that she is not able to think or be aware at the same time that she can fall. She has to concentrate so much on the action, she can't think of the consequences.
Today with PT, Sue mentioned that she thinks Kath is having issues with tracking and focusing on both sides, both eyes. She is unsure if it is a motor skill (eye muscle) or a visual impairment. So I will be calling to make an appointment.
I have been researching other therapies and have contacted someone in Rochester who put me in contact with someone in Toronto, Ontario about Felderkrais Therapy for Children. I have to keep reading too. I have been researching also hydrotherapy and I think Kath is too young right now for horse therapy. Last week we decided to have Kath evaluated for OT. This week, Liz, Kath's Speech Therapist told us a second time slot opened up, so we are gobbling that up. Kath has been learning a lot of signing, as we have too. The better her coordination, she better we can understand her. She is still not talking but she makes a lot of 'words' with the da-da sound. I am also planning on meeting with a friend about 'healing touch.'
At home we keep trying to engage her right hand as much as possible--for example, I let her finger paint, play with play do and of course color. We try to let her explore textures as much as possible.
Alex has started to 'read.' She rereads books to us after we read them. For example "The Ipsy, Dipsy Spider" may be one you have heard of? She is adorable. She loves to perform-dance, act, play instruments or sing. Or all of the above. She also likes to tell stories about her imaginary friend Nia and how she does all this bad stuff. She also loves to paint and draw. We have her art work in all rooms, taped to all surfaces. Ah, yes and she has begun to tell jokes. Knock, knocks are a favorite. She is quite inventive with who actually does the knocking! She is quite the chickie.
I miss the boys terribly, especially lately. I know they are doing well though so that helps.
Roger is sleepy and tired. Taking on too much.
I just wanted to write tonight, so here it is, with all its lumps and warts. More to follow--the writing, hopefully not the lumps and warts!
Good night!
After I wrote that part about Kath trying to throw herself off the picnic table?? Less than an hour later, she did JUST that and almost put her two front teeth through her bottom lip. Ah, the blood. Ah, the screaming. Ah, frustration. IF she could only make that hand go up to break her fall! I get the feeling that this chickie will have lots of boo-boos because she is so excited to be moving and groving that she is not able to think or be aware at the same time that she can fall. She has to concentrate so much on the action, she can't think of the consequences.
Today with PT, Sue mentioned that she thinks Kath is having issues with tracking and focusing on both sides, both eyes. She is unsure if it is a motor skill (eye muscle) or a visual impairment. So I will be calling to make an appointment.
I have been researching other therapies and have contacted someone in Rochester who put me in contact with someone in Toronto, Ontario about Felderkrais Therapy for Children. I have to keep reading too. I have been researching also hydrotherapy and I think Kath is too young right now for horse therapy. Last week we decided to have Kath evaluated for OT. This week, Liz, Kath's Speech Therapist told us a second time slot opened up, so we are gobbling that up. Kath has been learning a lot of signing, as we have too. The better her coordination, she better we can understand her. She is still not talking but she makes a lot of 'words' with the da-da sound. I am also planning on meeting with a friend about 'healing touch.'
At home we keep trying to engage her right hand as much as possible--for example, I let her finger paint, play with play do and of course color. We try to let her explore textures as much as possible.
Alex has started to 'read.' She rereads books to us after we read them. For example "The Ipsy, Dipsy Spider" may be one you have heard of? She is adorable. She loves to perform-dance, act, play instruments or sing. Or all of the above. She also likes to tell stories about her imaginary friend Nia and how she does all this bad stuff. She also loves to paint and draw. We have her art work in all rooms, taped to all surfaces. Ah, yes and she has begun to tell jokes. Knock, knocks are a favorite. She is quite inventive with who actually does the knocking! She is quite the chickie.
I miss the boys terribly, especially lately. I know they are doing well though so that helps.
Roger is sleepy and tired. Taking on too much.
I just wanted to write tonight, so here it is, with all its lumps and warts. More to follow--the writing, hopefully not the lumps and warts!
Good night!
Tuesday, April 1, 2008
An Attempt at Clarity
April 1st. Usually a time of mischief, especially when you have young children learning about "April Fool's Day!" and when you teach freshmen! However, I am starting new with this first day of April. Ha! How many times have I said that? No, that was rhetorical-don't go back and count! I guess the important thing is that I keep trying, not how many times I have to . . .keep trying.
A couple of months ago, Kath was diagnosed with CP. One lonely, scary night I found a blog from a woman with a child who has CP-her daughter was 17 months-old (at that point 2 months older than Kath). What I didn't realize until I started to read was that the journal part that I was reading was about 2 years old. So, I was able to read as this girl progressed. I was able to follow her growth and then even email her mom and ask some questions! I found such comfort in that.
A couple of months ago I seemed to have stopped writing. I had no energy for any 'me' stuff, only work with Kath, play with Al, keep in the loop with the boys and of course help Rog deal with his head boo-boo after his accident. My school stuff swayed to the back as well as my writing.
Breathing was an accomplishment. Not even housework seemed to get done (yuck anyway). All my energy was geared to keeping an appearance of calmness and control.
Yeah, well.
I am pulling together all of this to get to a point. On the writer's forum I made my goal of writing more and staying focused. I am going to use this blog to rework and hone my writing voice. To keep a journal of our fight with CP for Kath and for any other mom who might be awake one night feeling completely scared and overwhelmed. To organize my thoughts and to hold myself accountable to . . . myself.
I also hope that in this endeavor I see more accomplishments of mine as opposed to the list that never seems to go away with uncrossed out items.
Have to run, Kath is practicing flinging herself off the picnic table. No-oo . . . she is trying to climb and sit with finesse, which only LOOKS like she is throwing herself off. Ah, kids and April Fool's Day.
A couple of months ago, Kath was diagnosed with CP. One lonely, scary night I found a blog from a woman with a child who has CP-her daughter was 17 months-old (at that point 2 months older than Kath). What I didn't realize until I started to read was that the journal part that I was reading was about 2 years old. So, I was able to read as this girl progressed. I was able to follow her growth and then even email her mom and ask some questions! I found such comfort in that.
A couple of months ago I seemed to have stopped writing. I had no energy for any 'me' stuff, only work with Kath, play with Al, keep in the loop with the boys and of course help Rog deal with his head boo-boo after his accident. My school stuff swayed to the back as well as my writing.
Breathing was an accomplishment. Not even housework seemed to get done (yuck anyway). All my energy was geared to keeping an appearance of calmness and control.
Yeah, well.
I am pulling together all of this to get to a point. On the writer's forum I made my goal of writing more and staying focused. I am going to use this blog to rework and hone my writing voice. To keep a journal of our fight with CP for Kath and for any other mom who might be awake one night feeling completely scared and overwhelmed. To organize my thoughts and to hold myself accountable to . . . myself.
I also hope that in this endeavor I see more accomplishments of mine as opposed to the list that never seems to go away with uncrossed out items.
Have to run, Kath is practicing flinging herself off the picnic table. No-oo . . . she is trying to climb and sit with finesse, which only LOOKS like she is throwing herself off. Ah, kids and April Fool's Day.
Wednesday, March 12, 2008
March
So . . .we are a pretty lucky bunch.
We are coming to terms and working hard with Kath's diagnosis and issues. She has PT twice a week and speech once a week. She is repsonding well. Crawling like crazy, very fast! Speech is still very so-so. But she did say ma-ma this week. Yeah!
We see her diagnosis as a good thing, we can work with this. Of course life would be easier without this chapter, but it could be worse and since she is such a little stubborn fighter she will be okay. More than okay. I found a blog tonight-Cerebral Palsy Baby and found its earlier entries to be helpful and guiding. Emailed the writer to just see if she could sum up and give me more . . .connection? I don't know.
Alex has bee magnificent. She is a strong youg lady who helps and doesn't feelangry by helping. We try to make sure we giver her one-on-one time as well.
Chris is back at school and trying to deal with dorm issues. grr to girls who hurt my boys.
Nick is home for spring break. Did I say home? He is in town. Good thing I drove him home because that is the most I have seen of him! :-)
That brings me to Roger. He flipped his car two weeks ago on his way home during a snowstorm, after I called wondering where he was and hearing "Uh-oh, hold on a sec" and the phone going dead. Six staples to his head later . . . . His car is totaled--ironically we paid it off a month prior and took off the collision in an effort to save money. Ah. He is doing better, but since it came at a time when he just began a second job, taking classes at St Rose and still teaching . . . .he is very behind in his work. Me too since I have been caretaking. Who has time for work?
Hope my students don't take exception . . .:-)
Gotta get back to school work. :-)
We are coming to terms and working hard with Kath's diagnosis and issues. She has PT twice a week and speech once a week. She is repsonding well. Crawling like crazy, very fast! Speech is still very so-so. But she did say ma-ma this week. Yeah!
We see her diagnosis as a good thing, we can work with this. Of course life would be easier without this chapter, but it could be worse and since she is such a little stubborn fighter she will be okay. More than okay. I found a blog tonight-Cerebral Palsy Baby and found its earlier entries to be helpful and guiding. Emailed the writer to just see if she could sum up and give me more . . .connection? I don't know.
Alex has bee magnificent. She is a strong youg lady who helps and doesn't feelangry by helping. We try to make sure we giver her one-on-one time as well.
Chris is back at school and trying to deal with dorm issues. grr to girls who hurt my boys.
Nick is home for spring break. Did I say home? He is in town. Good thing I drove him home because that is the most I have seen of him! :-)
That brings me to Roger. He flipped his car two weeks ago on his way home during a snowstorm, after I called wondering where he was and hearing "Uh-oh, hold on a sec" and the phone going dead. Six staples to his head later . . . . His car is totaled--ironically we paid it off a month prior and took off the collision in an effort to save money. Ah. He is doing better, but since it came at a time when he just began a second job, taking classes at St Rose and still teaching . . . .he is very behind in his work. Me too since I have been caretaking. Who has time for work?
Hope my students don't take exception . . .:-)
Gotta get back to school work. :-)
Wednesday, February 20, 2008
The frog is still kicking
Ok. The frog is still alive. Facing my fears by keeping my friend's son's frog alive while she is in sunny, warm FL and I am still slipping on ice. :-)
Kath had a tough weekend. Woke up tight, was uncomfortable and not very smiley. Her smile is like a bit of sunshine in my day. Without it, I can tell what kind of day I will have, dreary. But then Monday night and Tuesday she perked up and began to move around more and try to do new things again.
Alex is the great big sister that she is. Always looking out for her sister and apparently understanding why her sister is getting more attention right now.
Boys are back at school, sounding good, except for Chris' cold.
I am doing ok.
~ Still wrapping my head around Kath's diagnosis and trying to 'fix' it. ~I haven't looked at school work this break, yet. I will pay for that if I don't start. I fell behind when my world fell apart.
~ I started last night with looking at the bills. Wow. So THAT is why we are getting so many calls! :-) Sorry Daily Things do fall by the wayside when crisis is evident. ~ I am endeavoring to get back on the stick with writing. Two years ago when I became serious about writing-bought the comp started sitting down for the forum . . .Nick ran into the wall and ended up in ICU. Now I am distracted again. But this will be different in the long run and I will need an outlet. Drinking wine doesn't count. :-)
Went to bed late (1:30AM) watching election returns for WI and HA. Then woke up during the night,as usual. Since Rog left already, I woke up. I seem to feel really guilty that he is up and working and I am not. (I better get over that soon so I can take care of things and he can rest!) So, I got up thinking it was 5:30 and I could get things done that I didn't last night. Well, when the real 5:30 showed itself in the corner of my comp I realized I woke up at 4:30. Ah. At least I did some yoga. Watched the light wake up the yard. Cleaned last night's dishes and cooking area, turned on the dishwasher. Switched wash over and put a new one. Washed kitchen floor. Drank too much coffee. Read the forum, wrote a couple of responses. Wrote to Aunt I. Wrote this. Overall, pretty good. Alex is awake and I am off.
Hope the rest of the day is as productive. :-)
Kath had a tough weekend. Woke up tight, was uncomfortable and not very smiley. Her smile is like a bit of sunshine in my day. Without it, I can tell what kind of day I will have, dreary. But then Monday night and Tuesday she perked up and began to move around more and try to do new things again.
Alex is the great big sister that she is. Always looking out for her sister and apparently understanding why her sister is getting more attention right now.
Boys are back at school, sounding good, except for Chris' cold.
I am doing ok.
~ Still wrapping my head around Kath's diagnosis and trying to 'fix' it. ~I haven't looked at school work this break, yet. I will pay for that if I don't start. I fell behind when my world fell apart.
~ I started last night with looking at the bills. Wow. So THAT is why we are getting so many calls! :-) Sorry Daily Things do fall by the wayside when crisis is evident. ~ I am endeavoring to get back on the stick with writing. Two years ago when I became serious about writing-bought the comp started sitting down for the forum . . .Nick ran into the wall and ended up in ICU. Now I am distracted again. But this will be different in the long run and I will need an outlet. Drinking wine doesn't count. :-)
Went to bed late (1:30AM) watching election returns for WI and HA. Then woke up during the night,as usual. Since Rog left already, I woke up. I seem to feel really guilty that he is up and working and I am not. (I better get over that soon so I can take care of things and he can rest!) So, I got up thinking it was 5:30 and I could get things done that I didn't last night. Well, when the real 5:30 showed itself in the corner of my comp I realized I woke up at 4:30. Ah. At least I did some yoga. Watched the light wake up the yard. Cleaned last night's dishes and cooking area, turned on the dishwasher. Switched wash over and put a new one. Washed kitchen floor. Drank too much coffee. Read the forum, wrote a couple of responses. Wrote to Aunt I. Wrote this. Overall, pretty good. Alex is awake and I am off.
Hope the rest of the day is as productive. :-)
Thursday, February 14, 2008
Disclaimer
I began his blog for my own writing. As a draft of my ideas. Sometimes I can scratch out a few minutes to write and I don't always have time to edit. Sometimes I edit days afterward. Sometimes I never go back. My apologies if mistakes bother you. This is me, a work in progress. :-)
Wednesday, February 13, 2008
One breath at a Time
In the whirlwind that has been my life, I have thought about how and if I would write about it. I have a difficult time saying the words. I seem to have avoided writing so I didn't have to file it.
But I am trying to face my fears. Beyond crazy albino frogs.
Kath, who will be 15 months old tomorrow, was diagnosed almost three weeks ago (Friday) with CP. I have a very tough time saying the real words. The abbreviation seems a little easier to deal with it.
I knew something was 'up.' I knew she wasn't behaving how she should for each of her months, from 8 months on. But it took some observations, marking time, and her yearly physical until the 'ball started to roll.' I told the doctor what I saw happening--or not happening- with Kath. She wasn't concerned but said she learned to trust her parents and sent us for an evaluation with Early Intervention. A month later Kath was evaluated with a delay-at 13 months she was at an 8-10 month olds development. She began PT in Jan. Improvements showed quickly. At the follow-up the doctor said she should see the neurologist. We waited for the appointment, but was called one Tuesday for a Wed appointment. At that appointment I heard scary words like autism and CP. An MRI was to be scheduled. Supposedly in two-three months. It turned out to be that Friday. The results came back with 'extensive abnormalities' in her left side, less folds in her brain impacting her movement and language. Cerebral Palsy.
For reasons we will never know, she was denied oxygen during her second trimester and suffered a stroke. That caused the damage.
We swam in bewilderment. I swam in guilt--what was going on during that time? Did I do something? She was supposed to be safe in me. I am supposed to be the one person --ok dad too- who can safeguard my children, but especially pre-term. I grieved feeling a loss of possiblities for Kath's future. Friends, loves, children.
I felt that surely everyone could see, somehow, that I was marked--no, that she was marked. That we were limping along trying to come to wrap our brains around this new child. My body actually ached like I was in some kind of accident, one that causes a sudden seizure of muscles and tightness for days afterward.
Then the next day she began running a fever. 104. She continued to fever until Thursday. She had an ear infection. A regular old ear infection. Not some strange side effect of a disease unknown.
I began to study my foe and understand it better. Disabilty, not disease. She wouldn't get worse. I began to lick my wounds. I avoided everyone. Phone calls to the house were people looking for me to console them. I did not have the energy. I was dealing with it all, plus a girl whose fever wouldn't go below 102 even on Tylenol.
The more I read, the more I tettered between feeling calmer and freaking out. Lack of sleep may have helped on the latter.
Then Sue--our PT--came over. Even though Kath was too sick for PT she knew we had questions. She said the magic words. She said 'minor case.' Since she knew Kath on a different level than our neurologist, I jumped at her words. Hell of a lot better than "extensive abnormalities."
On that Friday, some of the healing of my soul actually began but I didn't recognize it at the time. Chris sent me a list of people with CP who have lead incredible lives. Nick, after blasting God, told me it was no one's fault. Then an outpouring of love through emails of quiet support. A strong husband who took the front line barrage of frantic calls. Then Sue's magic words. An EEG that hasn't elicited a phone call telling us to be prepared for seizures or other issues. An incredible growth spurt of activity from Kath herself.
I am able to breath. I am able to push back some of my fears and try to start getting back to normal. I realize I have the same little girl, who just happens to have CP.
However, when she falls asleep in my arms, exhausted after having worked so hard to stack blocks or make her tight limbs move where she desires to go, I hold her. I don't lay her down in her crib. I hold her and I wonder, what made the oxygen go back on. I know I won't know. But I have stopped -for now- wondering what made it shut off. Now I am amazed and awed, what made it come back on?
We could be looking at a much different scenerio, if it hadn't.
I can't say 'by the grace of god' because that would seem to suggest that others didn't pray as much or weren't as worthy or whatever. But it has made me look on God more and try to refigure it out again. Especially when my three year old has suddenly started taling about God and Jesus and Mary!
Anyway, I am taking one breath at a time. I am holding onto each moment as long as I can. And I am breathing again.
But I am trying to face my fears. Beyond crazy albino frogs.
Kath, who will be 15 months old tomorrow, was diagnosed almost three weeks ago (Friday) with CP. I have a very tough time saying the real words. The abbreviation seems a little easier to deal with it.
I knew something was 'up.' I knew she wasn't behaving how she should for each of her months, from 8 months on. But it took some observations, marking time, and her yearly physical until the 'ball started to roll.' I told the doctor what I saw happening--or not happening- with Kath. She wasn't concerned but said she learned to trust her parents and sent us for an evaluation with Early Intervention. A month later Kath was evaluated with a delay-at 13 months she was at an 8-10 month olds development. She began PT in Jan. Improvements showed quickly. At the follow-up the doctor said she should see the neurologist. We waited for the appointment, but was called one Tuesday for a Wed appointment. At that appointment I heard scary words like autism and CP. An MRI was to be scheduled. Supposedly in two-three months. It turned out to be that Friday. The results came back with 'extensive abnormalities' in her left side, less folds in her brain impacting her movement and language. Cerebral Palsy.
For reasons we will never know, she was denied oxygen during her second trimester and suffered a stroke. That caused the damage.
We swam in bewilderment. I swam in guilt--what was going on during that time? Did I do something? She was supposed to be safe in me. I am supposed to be the one person --ok dad too- who can safeguard my children, but especially pre-term. I grieved feeling a loss of possiblities for Kath's future. Friends, loves, children.
I felt that surely everyone could see, somehow, that I was marked--no, that she was marked. That we were limping along trying to come to wrap our brains around this new child. My body actually ached like I was in some kind of accident, one that causes a sudden seizure of muscles and tightness for days afterward.
Then the next day she began running a fever. 104. She continued to fever until Thursday. She had an ear infection. A regular old ear infection. Not some strange side effect of a disease unknown.
I began to study my foe and understand it better. Disabilty, not disease. She wouldn't get worse. I began to lick my wounds. I avoided everyone. Phone calls to the house were people looking for me to console them. I did not have the energy. I was dealing with it all, plus a girl whose fever wouldn't go below 102 even on Tylenol.
The more I read, the more I tettered between feeling calmer and freaking out. Lack of sleep may have helped on the latter.
Then Sue--our PT--came over. Even though Kath was too sick for PT she knew we had questions. She said the magic words. She said 'minor case.' Since she knew Kath on a different level than our neurologist, I jumped at her words. Hell of a lot better than "extensive abnormalities."
On that Friday, some of the healing of my soul actually began but I didn't recognize it at the time. Chris sent me a list of people with CP who have lead incredible lives. Nick, after blasting God, told me it was no one's fault. Then an outpouring of love through emails of quiet support. A strong husband who took the front line barrage of frantic calls. Then Sue's magic words. An EEG that hasn't elicited a phone call telling us to be prepared for seizures or other issues. An incredible growth spurt of activity from Kath herself.
I am able to breath. I am able to push back some of my fears and try to start getting back to normal. I realize I have the same little girl, who just happens to have CP.
However, when she falls asleep in my arms, exhausted after having worked so hard to stack blocks or make her tight limbs move where she desires to go, I hold her. I don't lay her down in her crib. I hold her and I wonder, what made the oxygen go back on. I know I won't know. But I have stopped -for now- wondering what made it shut off. Now I am amazed and awed, what made it come back on?
We could be looking at a much different scenerio, if it hadn't.
I can't say 'by the grace of god' because that would seem to suggest that others didn't pray as much or weren't as worthy or whatever. But it has made me look on God more and try to refigure it out again. Especially when my three year old has suddenly started taling about God and Jesus and Mary!
Anyway, I am taking one breath at a time. I am holding onto each moment as long as I can. And I am breathing again.
Friday, February 1, 2008
a new start
Ok, so. My intent is to write everyday. Not just emails. Although now I have updates to do now again. At the end of last year I wrote email updates for when Chris was in Nicaragua to keep everyone informed about his adventures. Two years ago I did the updates after Nick's accident with the wall and his ICU stay. Now I am updating everyone on Kath's progress and her MRI adventures. But I also want to hold myself accountable for my own writing-since it is something I really want to begin to do something with.
So--I write usually after everyone is asleep. I go to the writer's forum and get inspired and see how everyone is doing. I have a great story idea-if I don't say so myself-- and really want it to grow into an actual written story.
My goal is to sit and write as if it were a part time job. Time in, practice, serious focus.
That's all for now--little bites. Kath is laying next to me on the couch while I type kicking me. The sedation meds they gave her yesterday has made her a bit clingy and whiny.
Me
So--I write usually after everyone is asleep. I go to the writer's forum and get inspired and see how everyone is doing. I have a great story idea-if I don't say so myself-- and really want it to grow into an actual written story.
My goal is to sit and write as if it were a part time job. Time in, practice, serious focus.
That's all for now--little bites. Kath is laying next to me on the couch while I type kicking me. The sedation meds they gave her yesterday has made her a bit clingy and whiny.
Me
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