Monkey bear is into fashion. I'm not sure where she gets it, but I do know it's not from me. My clothes scream, "please don't notice me." Any attempts I made at putting together an outfit in my youth consisted of copying someone else's look.
Monkey bear gets out of bed and heads straight for the dresser in the morning.. It's never just a shirt and pants. There are many layers to each look - pants, long sleeved shirt, dress, extra skirt, and just the right socks. Usually about the time I am in the shower the outfit is deemed, "not quite right" and she is allowed to change.
Then there is story time in bed at night. You can't just tell a story. Each character has to have a specific outfit - description provided by monkey bear. There are many dresses and fancy shoes that sparkle and don't forget the hat.
When we are at Target we spend some time strolling down the toy isle. Never once has monkey bear asked for a toy. Then we hit the clothing racks and she wants "just one new shirt ... please." When the bag of hand-me-downs comes from her cousin you would think it was Christmas morning.
It's amazing how girly one can become with no real role model. I'm afraid to see what the teenage years will bring.
January 19, 2011
January 10, 2011
typical
When your child does not have special needs, the term that floats around is typical. I have a hard time thinking of us as not typical. Today, for example, was just a typical day in the life of a stay at home mom:
Everyone was dressed, fed, teeth brushed and decked out in winter wear ready for a much needed trip to the grocery store. I strapped my buddy in and went to turn the car on ... it wouldn't start. After a quick call to my car guy (aka. Grampa) we headed inside to call roadside assistance.
Once the car was working it was lunch and naptime. I spent naptime on computer duty. See my buddy likes to throw things at the computer when he isn't able to climb up onto the desk to pound on it with his fists. So the desktop bid its final goodbye. Luckily we have the laptop from law school. Unfortunately, it's up to me to transfer data - the most important being iTunes.
There are nights my buddy won't eat anything unless distracted by his favorite tunes. There went my alone time with monkey bear... straight to the computer.
Soon enough it was time for the grocery store. I started the car before I put anyone's coat on and we were on our way. While walking through the parking lot, monkey bear fell and scraped her knee. Inside the grocery store, I strapped my buddy into the cart and examined the knee. We were in need of a bandaid. Monkey bear rode in the cart and we headed straight for the first aid. Once a Kailan bandaid was applied, I thought we were in the clear... oh so wrong. Monkey bear declared she could not walk.
The only carriage known to man that my buddy cannot wiggle his way out of is the front of a grocery cart. The strap is high enough when added to the restricted mobility of the leg holes. So in order for monkey bear and her hurt knee to sit, I had to push them in one cart while dragging another cart behind me for the groceries. Have I mentioned it was a BIG shopping trip?
Halfway through the store after her mood had been brightened with ham and cheese and the promise of whatever kind of ice cream she wanted, monkey bear decided she could walk after all. I did the ol' carriage switcharoo and we cruised through the rest of the store with a much lightened load.
Once home, I unloaded the groceries while my buddy put a hat on the cat. That's when I noticed the poop smell wasn't coming from the litter box, but from the furry bottom of our furry friend. Once that mess was cleaned, the TV went on so Mommy could make dinner. My buddy has just discovered the TV. He is in love with 'Baby Signing Time' and requests it with fevered grunts and many signs. Fear ye who puts on a different show.
Home-made pizza. Sounds like a nice easy dinner. One pizza with butternut squash sauce, pepperoni and olives, another with half broccoli and a hint of cheese and half pepperoni and lots of cheese. Oh and a whole separate meal for monkey bear who only eats pizza the following day cold. Then there was the poopey diaper in the middle of all that along with every toy known to man spread out on the living room floor.
All I've got to say is thank goodness I'm a stickler for bedtime and they are out by 7:30pm because I don't think I'd make it much longer.
I guess my point is that while my buddy makes life a little harder, it really isn't so different from anyone else.
Everyone was dressed, fed, teeth brushed and decked out in winter wear ready for a much needed trip to the grocery store. I strapped my buddy in and went to turn the car on ... it wouldn't start. After a quick call to my car guy (aka. Grampa) we headed inside to call roadside assistance.
Once the car was working it was lunch and naptime. I spent naptime on computer duty. See my buddy likes to throw things at the computer when he isn't able to climb up onto the desk to pound on it with his fists. So the desktop bid its final goodbye. Luckily we have the laptop from law school. Unfortunately, it's up to me to transfer data - the most important being iTunes.
There are nights my buddy won't eat anything unless distracted by his favorite tunes. There went my alone time with monkey bear... straight to the computer.
Soon enough it was time for the grocery store. I started the car before I put anyone's coat on and we were on our way. While walking through the parking lot, monkey bear fell and scraped her knee. Inside the grocery store, I strapped my buddy into the cart and examined the knee. We were in need of a bandaid. Monkey bear rode in the cart and we headed straight for the first aid. Once a Kailan bandaid was applied, I thought we were in the clear... oh so wrong. Monkey bear declared she could not walk.
The only carriage known to man that my buddy cannot wiggle his way out of is the front of a grocery cart. The strap is high enough when added to the restricted mobility of the leg holes. So in order for monkey bear and her hurt knee to sit, I had to push them in one cart while dragging another cart behind me for the groceries. Have I mentioned it was a BIG shopping trip?
Halfway through the store after her mood had been brightened with ham and cheese and the promise of whatever kind of ice cream she wanted, monkey bear decided she could walk after all. I did the ol' carriage switcharoo and we cruised through the rest of the store with a much lightened load.
Once home, I unloaded the groceries while my buddy put a hat on the cat. That's when I noticed the poop smell wasn't coming from the litter box, but from the furry bottom of our furry friend. Once that mess was cleaned, the TV went on so Mommy could make dinner. My buddy has just discovered the TV. He is in love with 'Baby Signing Time' and requests it with fevered grunts and many signs. Fear ye who puts on a different show.
Home-made pizza. Sounds like a nice easy dinner. One pizza with butternut squash sauce, pepperoni and olives, another with half broccoli and a hint of cheese and half pepperoni and lots of cheese. Oh and a whole separate meal for monkey bear who only eats pizza the following day cold. Then there was the poopey diaper in the middle of all that along with every toy known to man spread out on the living room floor.
All I've got to say is thank goodness I'm a stickler for bedtime and they are out by 7:30pm because I don't think I'd make it much longer.
I guess my point is that while my buddy makes life a little harder, it really isn't so different from anyone else.
January 4, 2011
progress
I had a check-up at the doctor's today - on a side note: What doctor's office does not carry People magazine? Don't these people know that I rarely get away from the kids and that 10 minute wait is some precious me-time in which increasing my celebrity knowledge is crucial?
Anyway, I get sent across the street to the hospital to have some bloodwork done. This is the same hospital where my buddy was born and spent 2 long weeks there while I traveled back and forth trying desperately to care for both my babes. My usual response upon walking into the lobby is sobbing. All the emotions of that crazy time come flooding back and I have a hard time controlling myself.
Today, I made progress. I was preparing myself for the emotional attack while walking up the sidewalk. Wouldn't you know, I walked in, paused for a moment, and felt nothing. It was just a hospital lobby. There was no grief attached to it. No remorse or could-have-beens.
I have always loved my buddy with every fiber of my being, but today I realized that I accept him. I have come to terms with the words that used to haunt me: Down syndrome. It is no longer a scary place where people wear mismatched sweat outfits and get stared at everywhere they go. It is a place where I am proud and where my buddy is the mayor and all who see him love him.
Anyway, I get sent across the street to the hospital to have some bloodwork done. This is the same hospital where my buddy was born and spent 2 long weeks there while I traveled back and forth trying desperately to care for both my babes. My usual response upon walking into the lobby is sobbing. All the emotions of that crazy time come flooding back and I have a hard time controlling myself.
Today, I made progress. I was preparing myself for the emotional attack while walking up the sidewalk. Wouldn't you know, I walked in, paused for a moment, and felt nothing. It was just a hospital lobby. There was no grief attached to it. No remorse or could-have-beens.
I have always loved my buddy with every fiber of my being, but today I realized that I accept him. I have come to terms with the words that used to haunt me: Down syndrome. It is no longer a scary place where people wear mismatched sweat outfits and get stared at everywhere they go. It is a place where I am proud and where my buddy is the mayor and all who see him love him.
December 23, 2010
personality
I am raising two very different children. Other than a deep love for each other, I don't think they have anything in common.
Monkey bear had her preschool family celebration the other day. The kids filed in and stood with their toes on a line and sang a song... at least that was the intention.
Monkey bear froze as soon as she walked into the room and had to be led to the line by a teacher. She did manage to do the hand signs but that was it. There was a lot of nose/eye/mouth rubbing and when the hand wasn't enough, she proceeded to lift her dress and wipe her face with that. Monkey bear did warn me ahead of time that she wasn't going to sing anything.
Meanwhile, my buddy walked from person to person like the mayor of Munchkinville. He smiled and waved at anyone who would look at him. My buddy loves the attention - looking each person in the eye then smiling that award winning smile. Of course, he took a break now and then to try and run out the door or lick the floor - it is hard to resist licking a shiny surface.
One of the most fun parts of parenthood is finding out who your children will turn out to be.
Monkey bear had her preschool family celebration the other day. The kids filed in and stood with their toes on a line and sang a song... at least that was the intention.
Monkey bear froze as soon as she walked into the room and had to be led to the line by a teacher. She did manage to do the hand signs but that was it. There was a lot of nose/eye/mouth rubbing and when the hand wasn't enough, she proceeded to lift her dress and wipe her face with that. Monkey bear did warn me ahead of time that she wasn't going to sing anything.
Meanwhile, my buddy walked from person to person like the mayor of Munchkinville. He smiled and waved at anyone who would look at him. My buddy loves the attention - looking each person in the eye then smiling that award winning smile. Of course, he took a break now and then to try and run out the door or lick the floor - it is hard to resist licking a shiny surface.
One of the most fun parts of parenthood is finding out who your children will turn out to be.
December 17, 2010
blindsided
We were sitting down to a relaxing meal when I was blindsided. By relaxing meal, I mean that my buddy had completely covered the hand I use to hold his plate in food and had moved on to stuffing peas down his shirt. Then out of nowhere, monkey bear says, "Will my buddy be a Daddy when he grows up?"
After I swallowed the lump in my throat the conversation continued:
"No, he won't be a Daddy"
"What will he be?"
"Just a grown up."
"Why won't he be a Daddy?"
"Because he has Down syndrome he can't have kids."
"Oh, so he'll be a Buddy Walk guy."
"Uh sure. And he will be an uncle to your kids."
"Can I call him Uncle Phil?"
"You could, but his name isn't Phil."
It's funny how things you don't think of often come up in the most unexpected ways. I hate having to say it out loud and put it so plain to monkey bear, but I don't want to lie to her. I wouldn't want her blindsided by the truth some day.
After I swallowed the lump in my throat the conversation continued:
"No, he won't be a Daddy"
"What will he be?"
"Just a grown up."
"Why won't he be a Daddy?"
"Because he has Down syndrome he can't have kids."
"Oh, so he'll be a Buddy Walk guy."
"Uh sure. And he will be an uncle to your kids."
"Can I call him Uncle Phil?"
"You could, but his name isn't Phil."
It's funny how things you don't think of often come up in the most unexpected ways. I hate having to say it out loud and put it so plain to monkey bear, but I don't want to lie to her. I wouldn't want her blindsided by the truth some day.
December 12, 2010
the r-word
After you are part of the Down syndrome community for a certain amount of time, you learn how everyone feels about the r-word. You also come to realize how different it feels to hear the word after Ds is a part of your life. You are also, inevitably, faced with how you will react when you hear someone use the r-word. The other day I failed miserably.
I was in the grocery store with monkey bear and my buddy. My buddy had spent the entire time throwing any item he could get his hands on out of the cart. I alternated between picking food up off the ground and holding his arms still while he screamed at me. We had finally made it to the check-out line.
I was unloading groceries with my back to my buddy. He was in arms reach of the 5 foot tall Andy's candies cardboard display. My buddy took the whole display down scattering boxes of Andy's candies every which way. I was at the end of my rope.
The teenage cashier was ringing our food up when her friend came over and was making silly noises. The cashier, under her breath, laughs and says, "You are so retarded." I stood there paralyzed and had a very long discussion with myself in my head.
For those of you who don't know me personally, I will tell you that speaking my mind is not something I do easily. I often find myself saying something in my head over and over and never being able to get it out.
So there I was considering just what I would say to her, wondering if she knew what Down syndrome was, feeling my face flush just thinking of the confrontation. Before I knew it, the moment had passed and I said nothing. I wonder if the situation were to happen again tomorrow if I would react any differently.
I was in the grocery store with monkey bear and my buddy. My buddy had spent the entire time throwing any item he could get his hands on out of the cart. I alternated between picking food up off the ground and holding his arms still while he screamed at me. We had finally made it to the check-out line.
I was unloading groceries with my back to my buddy. He was in arms reach of the 5 foot tall Andy's candies cardboard display. My buddy took the whole display down scattering boxes of Andy's candies every which way. I was at the end of my rope.
The teenage cashier was ringing our food up when her friend came over and was making silly noises. The cashier, under her breath, laughs and says, "You are so retarded." I stood there paralyzed and had a very long discussion with myself in my head.
For those of you who don't know me personally, I will tell you that speaking my mind is not something I do easily. I often find myself saying something in my head over and over and never being able to get it out.
So there I was considering just what I would say to her, wondering if she knew what Down syndrome was, feeling my face flush just thinking of the confrontation. Before I knew it, the moment had passed and I said nothing. I wonder if the situation were to happen again tomorrow if I would react any differently.
November 29, 2010
rewards
You know it's time to get away when your 3 year old doesn't know what a 'babysitter' is. So off I go to an adult matinee for a break from the kids and some girl time with my BFF. (And, no, monkey bear still doesn't know what a babysitter is because she was home with Daddy.)
Sitting behind us were two women. Once the previews began, one of them started making comments way too loud. After a few minutes it became clear that she has some sort of intellectual disability and was there with her mom. As the movie begins - that would be the R movie with a lot of adult content - I get more and more uncomfortable hearing the questions from the daughter. You can tell the mom had no idea what the movie was about and is trying to figure out what to do. At one point the daughter said, "I'm 20 years old, I am old enough to see this."
After about 10 minutes the mom talks the daughter into leaving. It's funny how you go somewhere to "get away" and there is always something to bring you back home again. Lately, I feel like I've been only getting reminders of the negative side of Down syndrome. Stories about behavioral issues in school, kids wandering off, and reminders that even as a 20 year old adult, there are still concerns.
Today that changed. I got a call from my cousin who has a friend that just had a baby with Down syndrome. Her friend is deep in the grief stage. I can remember how that feels. But I am also privileged with loving a two year old with Down syndrome. The fear and grief is gone. It's replaced with a love that is beyond what words can describe. As cliche as it sounds, there really is something magical in my buddy that wouldn't be there without that extra chromosome.
I am thankful that Down syndrome has touched my life. I will never be the same and anyone who is open to love my buddy will be changed by him. Monkey bear will be a better person. The rewards greatly outweigh the cost.
Sitting behind us were two women. Once the previews began, one of them started making comments way too loud. After a few minutes it became clear that she has some sort of intellectual disability and was there with her mom. As the movie begins - that would be the R movie with a lot of adult content - I get more and more uncomfortable hearing the questions from the daughter. You can tell the mom had no idea what the movie was about and is trying to figure out what to do. At one point the daughter said, "I'm 20 years old, I am old enough to see this."
After about 10 minutes the mom talks the daughter into leaving. It's funny how you go somewhere to "get away" and there is always something to bring you back home again. Lately, I feel like I've been only getting reminders of the negative side of Down syndrome. Stories about behavioral issues in school, kids wandering off, and reminders that even as a 20 year old adult, there are still concerns.
Today that changed. I got a call from my cousin who has a friend that just had a baby with Down syndrome. Her friend is deep in the grief stage. I can remember how that feels. But I am also privileged with loving a two year old with Down syndrome. The fear and grief is gone. It's replaced with a love that is beyond what words can describe. As cliche as it sounds, there really is something magical in my buddy that wouldn't be there without that extra chromosome.
I am thankful that Down syndrome has touched my life. I will never be the same and anyone who is open to love my buddy will be changed by him. Monkey bear will be a better person. The rewards greatly outweigh the cost.
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