I took the little lady to the park today after I picked her up from daycare, despite my obvious sinus cold! I tried to be a good sport and an even better mom; twenty minutes and I was thankful she was headed back to the car on her own terms!
There is so much to be thankful for--the small things and the big things. I'm so thankful there was not a tantrum leaving the park because I may have had one right alongside her. I'm so thankful that my princess is continuing to grow and develop.
I'm trying to be thankful that I got some rest in this weekend, at the same time I'm trying to ignore the added stress because of the lack of housework I tackled in the last 3 days. You know what didn't get done today: more than 1 load of laundry, dusting the living room, filing the stack of bills on the counter. I try to tell myself I can do it during the week, but playing catch up on housework during the week while working full time is near impossible. My house isn't near as clean as it would be if I were a stay at home mom. I leave at 7; I get home at 4:30. Dinner is started by 5, eating around 6. Then there's bath and books and playing. I can only accomplish so much in the hours I'm at home. So instead I focus on being thankful that I have a job with the way things are right now. Our bills are paid, we can visit the zoo, and go to a baseball game.
I digress. We're at the park, and obviously a zillion other families had the same idea on this beautiful day. I hovered. I know I'm guilty of that. But what am I supposed to do? I can't stand the idea of sending my little lady to play amongst 15 other kids who aren't going to watch out for her fingers. I don't want to risk her lashing out and hitting another kid because she was pushed, stepped on, shoved, and she doesn't have the words to stay more than "Stop." She's 3, and she wants to be 3, and I want her to be 3. But I also need to keep her safe. Playground equipment is a nightmare. It seriously makes me so nervous. She wants to play with her peers, but she just doesn't have the gross motor skills to keep up yet. She wants to run. She yells "run run run" every time someone runs by her, but she just can't do it yet. I know she will. This is not about me feeling sad because of a delay, or frustrated because she's meeting milestones on her time. I think she's a stellar kid, and even if she never runs, I'll still love her just as much as I do today. Okay, let's be honest, probably more because my love grows every day for her!
This is about how I don't know how to be a "normal" mom. And I'm absolutely not complaining! I'm just saying that I don't know how to send my 3 year old to run and play at the park while I sit on a bench socializing with other moms. I have to follow her around. She hasn't mastered steps, therefore the ladders that fill playgrounds are like death traps! The multi-tiered levels require a child to pay attention to depth perception and understand that somethings are not on a single level. One step and she could tumble very easily. I don't pick her up and carry her around, but I'm right there at arms' length just in case she stumbles. I can't sit her at a table with crayons and paper because she still eats the crayons. She can't just go play in the backyard. She's 3 but not ready for dance lessons, swim lessons, gymnastics lessons, etc. Too much direction following. I can't just let her play on the porch with chalk while I take care of the flowers in the garden.
Just the other day someone at work was complaining that her 2 year old had two accidents for the first time in months. She was so annoyed that one happened over night and they had to strip the sheets. It just seemed like something so trivial to get worked up about. I looked right at her as she looked to me for sympathy, and said "well, I wouldn't know what that's like. Diapers all the way here!" I wasn't trying to be rude. I was sharing my reality. I'm sure my perspective is jaded because I only know how to be her mom.
I love my daughter, and I love being her mother. And I'm understand one day I'll hand her over to surgeons to repair her heart. I'm okay with still changing diapers; I'm okay with still explaining social expectations to her. I'm okay with sippy cups still. I'm okay with our limited understanding of her spoken words. I'm okay with her smaller than typical size. I'm okay with the fact that she was 2 before she started walking. Sure, some things are harder than others to swallow. Just because I'm okay with something or have accepted it doesn't mean I'm thrilled by it. This is my life, and my life is about her reaching her greatest potential. I will push, pull and catch her whenever I need to, for as long as I need to.
But some days I see how the public looks at me, how they look at my beautiful daughter. It frustrates me. I don't want your pity or sympathy or even empathy. And I know I'll experience this for the rest of our lives. Yes, I don't know how to be a normal mom. But I excel at being Emery's mom. I see strangers parenting at the park or at a restaurant. I see strangers' looks while we're grocery shopping. I don't envy their perspectives! I see these people and I know how I was exactly the mother Emery is supposed to have. She was given to the right family. And I am thankful for that.
Monday, April 9, 2012
Friday, April 6, 2012
It's been too long!
I've loved writing, since I was a little girl. I still do. Yet, for some reason, I don't turn to it enough. I started this blog to share Emery, my family, my life, my writing with the world. I have not done a very good job of keeping with it. I get busy or tired and just forget. Not a very good excuse, I know. I think I'm still trying to find my blogging feet. I certainly am not at a loss of things to say. However, my mama taught me manners. I can vent and complain with the best of 'em, but I'm not foolish enough to do so in a public forum about topics such as work or specific people. And I'm not going to write an over the top sugary sweet blog because that can be unrealistic.
I have plenty of things I'd like to discuss--about my daughter, her abilities and challenges, society and perceptions, news events, and education. I struggle with wanting to be heard and wanting to blend in with the wallpaper. Sounds ridiculous, I know.
Here's what else I know. It's been far too long since I've written. It's been too long since I've written here. This is a place where I can record my thoughts and feelings on being a mother. I can use my words to create a snapshot of life. I'm hoping to grow in my advocacy role even more this year. I'm not one to enjoy shoving my agenda down your throat, but I have the skill to craft a piece of writing to advocate while telling a story. I plan to start doing that more often. I'm feeling inspired lately, for many reasons I'm sure.
I told my husband last night I wanted to start spending a few hours a week writing. I need to see my words fill pages. I have a story to tell. Even if the public never reads it, I NEED to complete it. I do not have a title for this memoir yet, but it's a work in progress. Just like me!
I have plenty of things I'd like to discuss--about my daughter, her abilities and challenges, society and perceptions, news events, and education. I struggle with wanting to be heard and wanting to blend in with the wallpaper. Sounds ridiculous, I know.
Here's what else I know. It's been far too long since I've written. It's been too long since I've written here. This is a place where I can record my thoughts and feelings on being a mother. I can use my words to create a snapshot of life. I'm hoping to grow in my advocacy role even more this year. I'm not one to enjoy shoving my agenda down your throat, but I have the skill to craft a piece of writing to advocate while telling a story. I plan to start doing that more often. I'm feeling inspired lately, for many reasons I'm sure.
I told my husband last night I wanted to start spending a few hours a week writing. I need to see my words fill pages. I have a story to tell. Even if the public never reads it, I NEED to complete it. I do not have a title for this memoir yet, but it's a work in progress. Just like me!
Monday, August 22, 2011
Why don't you just admit it?
Why don't you just admit it? It's so obvious you feel sorry for me.
Just a few "small" things irked me this past week. Last Friday was crummy. I just couldn't make myself be in a good mood, and usually there's a few go to things that cheer me up. However, they just weren't working. At the end of Friday I sat down and kind of laughed. The best part of my crummy Friday? That none of the things working me into a tizzy had anything to do with Down syndrome. I mean, Emery is amazing. She can make me smile no matter what is going on. Now, she's kind of in a stinker mood herself lately. Telling me no and such, but that's okay. I'll take it. It means she's 2!
Anyway, two incidents just rubbed me the wrong way, and here I am days later still thinking of them. Some people are just insensitive or lack tact, or maybe they lack general common courtesy. Others are just socially awkward--trying to be nice, participate in a conversation, make connections, when instead just further alienate because of absurd statements. I just want to tell this woman to hush. I wish she realized how uneducated her comments make her seem. I am the first to admit the world of Down syndrome was overwhelming and unnerving when little lady was born. But I took my lead from other, more experienced moms. I listened (novel idea, I know), and picked up the lingo, the pc terminology. Being politically correct is an entirely different blog post that maybe one day I'll brave, but I'll save that soapbox for later. Okay, back on topic. I just want to scream "I see the way you look at me when I share Emery stories." I can see her wheels turn to think about how old her child was when he reached these milestones. Great, your kid was talking in full paragraphs by this point. Was he fluent in French too? Because if he was, then I'd be impressed.
It can be hard to see other 2 year olds and compare. Don't tell me not to! We all do! Everyone does. It's in our nature. I don't see it as a competition; part of me feels like if I stay hyper vigilant of her delays, then I can stay on top of them. Okay, she takes a swing at you if you are not paying attention to her when she demands it. Nope, no one else is doing that anymore. So, we'll work on it. We'll focus on some socialization activities.
This weekend while at lunch I caught a grown woman pointing at my daughter. She couldn't have stared any harder if she tried. The way she "whispered," while pointing, "Look, right there, that little girl, she has Down syndrome," really struck a nerve. She gets props for labeling her disability properly. If she had said "that little girl is Downs," like I've seen before I might not have kept my composure. I wanted to stand up and and say "Yep, she does. Problem?" The way she exaggerated each word was like I was holding an escaped monkey from the zoo. She and her husband stared the remainder of our time there, and their heads moved in warp speed to face the opposite direction as we stood to leave. I couldn't figure it out. Some days it doesn't bother me when people stare. I figure they have their reasons. I was taught not to stare, but that does not mean they were. It just didn't feel like a positive encounter. I mused over the lunch gathering to decide if Em had done something that might have drawn some attention to herself. Did she scream or throw a tantrum? Nope, unlike other children there for lunch, she mostly sat in her seat and ate her green beans, broccoli, rice, and chicken. Did she throw her things? She did miss the table once when putting her sippy cup back, but that's not unusual. Was she unpleasant? Of course not. She waved and said hello as people passed her. She gave an unprompted "thank you" to the waiter, at an appropriate time I might add.
I don't know why it bothered me. Maybe because I wanted to know why she cared so much. Did she have a good enough reason? I'll never know. Often times in the quiet I think about how we are perceived by others. Our parents? What do they think of us? Of this journey? Do they feel sad for us? Are they proud of us? They have not lived this experience as parents, as I have not lived their grandparent experience. If I could be a fly on the wall! Do our friends pity us? Our lives as parents? It's bizarre to be living a lifestyle that you can only partly relate to others. I suppose that could be true for many situations though. I do not know what it's like to be a single mother, to be unemployed, to have a prenatal diagnosis, to have a 2 year old that has had multiple surgeries. We've met many amazing people since Emery was born, but no one in our lives before totally gets it. And that can be tough. The toughest part is wondering if people have questions but are just afraid to ask.
Just for the record, I'd rather you ask. Whispers can hurt!
Just a few "small" things irked me this past week. Last Friday was crummy. I just couldn't make myself be in a good mood, and usually there's a few go to things that cheer me up. However, they just weren't working. At the end of Friday I sat down and kind of laughed. The best part of my crummy Friday? That none of the things working me into a tizzy had anything to do with Down syndrome. I mean, Emery is amazing. She can make me smile no matter what is going on. Now, she's kind of in a stinker mood herself lately. Telling me no and such, but that's okay. I'll take it. It means she's 2!
Anyway, two incidents just rubbed me the wrong way, and here I am days later still thinking of them. Some people are just insensitive or lack tact, or maybe they lack general common courtesy. Others are just socially awkward--trying to be nice, participate in a conversation, make connections, when instead just further alienate because of absurd statements. I just want to tell this woman to hush. I wish she realized how uneducated her comments make her seem. I am the first to admit the world of Down syndrome was overwhelming and unnerving when little lady was born. But I took my lead from other, more experienced moms. I listened (novel idea, I know), and picked up the lingo, the pc terminology. Being politically correct is an entirely different blog post that maybe one day I'll brave, but I'll save that soapbox for later. Okay, back on topic. I just want to scream "I see the way you look at me when I share Emery stories." I can see her wheels turn to think about how old her child was when he reached these milestones. Great, your kid was talking in full paragraphs by this point. Was he fluent in French too? Because if he was, then I'd be impressed.
It can be hard to see other 2 year olds and compare. Don't tell me not to! We all do! Everyone does. It's in our nature. I don't see it as a competition; part of me feels like if I stay hyper vigilant of her delays, then I can stay on top of them. Okay, she takes a swing at you if you are not paying attention to her when she demands it. Nope, no one else is doing that anymore. So, we'll work on it. We'll focus on some socialization activities.
This weekend while at lunch I caught a grown woman pointing at my daughter. She couldn't have stared any harder if she tried. The way she "whispered," while pointing, "Look, right there, that little girl, she has Down syndrome," really struck a nerve. She gets props for labeling her disability properly. If she had said "that little girl is Downs," like I've seen before I might not have kept my composure. I wanted to stand up and and say "Yep, she does. Problem?" The way she exaggerated each word was like I was holding an escaped monkey from the zoo. She and her husband stared the remainder of our time there, and their heads moved in warp speed to face the opposite direction as we stood to leave. I couldn't figure it out. Some days it doesn't bother me when people stare. I figure they have their reasons. I was taught not to stare, but that does not mean they were. It just didn't feel like a positive encounter. I mused over the lunch gathering to decide if Em had done something that might have drawn some attention to herself. Did she scream or throw a tantrum? Nope, unlike other children there for lunch, she mostly sat in her seat and ate her green beans, broccoli, rice, and chicken. Did she throw her things? She did miss the table once when putting her sippy cup back, but that's not unusual. Was she unpleasant? Of course not. She waved and said hello as people passed her. She gave an unprompted "thank you" to the waiter, at an appropriate time I might add.
I don't know why it bothered me. Maybe because I wanted to know why she cared so much. Did she have a good enough reason? I'll never know. Often times in the quiet I think about how we are perceived by others. Our parents? What do they think of us? Of this journey? Do they feel sad for us? Are they proud of us? They have not lived this experience as parents, as I have not lived their grandparent experience. If I could be a fly on the wall! Do our friends pity us? Our lives as parents? It's bizarre to be living a lifestyle that you can only partly relate to others. I suppose that could be true for many situations though. I do not know what it's like to be a single mother, to be unemployed, to have a prenatal diagnosis, to have a 2 year old that has had multiple surgeries. We've met many amazing people since Emery was born, but no one in our lives before totally gets it. And that can be tough. The toughest part is wondering if people have questions but are just afraid to ask.
Just for the record, I'd rather you ask. Whispers can hurt!
Monday, August 15, 2011
My how the time flies!
“last night was the best sleep Em and I have had in about 5 days, so here's to hoping that her antibiotic is finally starting to work. at least her fevers hovering near 104 are gone :)”
A year ago today that was my facebook status. I could hardly believe it when I read it myself. Last fall and winter was brutal. My sweet girl was sick constantly from the end of July to about April. If it wasn’t an ear infection, it was a sinus infection. And if it wasn’t that it was unexplainable HIGH fevers. That was the hardest part. The not knowing. I could understand the progression from a virus to a full blown infection; in fact, it didn’t even surprise me. But the high fevers and constant vomiting and losing precious ounces were incredibly stressful.
We didn’t feel like we had many choices. Emery only went to daycare 2 days a week. It was hard to fathom two days a week wreaking havoc on her system. But where else could she be getting it from? The kids in her room were definitely the goopiest, greenest snot drippers I have ever run across, but I tried to believe things were being handled appropriately at daycare. So my little lady only went two days a week, and she often spent the rest of the week recovering from said illness. She almost never had to miss a day. It was just a constant crummy feeling for her.
In October we decided to pull her from private therapy. I was bummed initially; however, Emery was almost always miserably sick the day following a session. I loved the place she went. Her OT was exceptional, and Emery always worked so hard. Maybe that was the problem? Maybe she was working too hard? So, we pulled her. It was a tough decision, but we thought exposing her to less potential germs was probably beneficial. Plus, private therapy isn’t cheap and neither is paying a pediatric copay every 5 to 7 days, followed by lab, radiology, and pharmaceutical bills. Yikes.
I worked so much of last year on very little sleep. A few hours here or there. Many nights holding a crying baby or a sweaty baby. There was rocking, swaying, singing, cool rags, and breathing treatments galore! It wasn’t easy—emotionally or physically. All of this on top of working full time and practically being a full time graduate student (2 classes a semester). Needless to say much of the fall and winter is a blur. I couldn’t wait for it to be over.
It’s fall again. I have to admit I’ve been a bit anxious about it. I love fall; it has always been my favorite season. So far, Emery is doing great. One day of fevers, this past weekend. The best part—it didn’t grow into something more. It was just a snuggly, lazy Saturday with a low-grade temperature. We survived that day.
When we pulled Emery from the daycare in April, I was feeling very overwhelmed. The pressure to make the best decision for your child is exhausting. I don’t know how many times I would go over my pro/con list. In the end, I felt that the one thing I knew for sure was that I would not regret having my entire summer at home with her instead of sharing her with daycare “teachers” who quite possibly just didn’t love (or even get) my kid. It was the right choice. Easily. I trusted my instinct. I had faith and leapt. It took almost no time before Emery was totally well. She hasn’t seen the doctor since mid-April for a sick visit, which was before her last day at the center. Her breathing treatments, which were at one time 5x a day, are totally gone. No antibiotics, no asthma medication. Even her reflux seems fine. You know what else I did? I gave Emery a summer break from early intervention “therapy.” She hasn’t had any sessions, visits, or special appointments all summer. It’s been amazing, kind of like having a “normal” kid. I know the pendulum can swing again. I’m ready for it this time. It won’t catch me by surprise. It won’t rip my heart out to work on homework as my feverish angel sleeps in my lap. Nope. This fall, I get to be just mom in the evenings. Sure I still have to work, but this is why I busted my tail. At 2 my daughter will never remember last fall’s many nights where I had to juggle school and home. At 2 my daughter has a mommy who can focus on her from the time she picks her up at her new daycare until the time she crawls onto her pillow and drifts to sleep in her room. I don’t have to worry about the nasty things the center’s employees will say about my daughter. About how her behaviors. Funny how they thought she was the problem. Clearly, they got it all backwards.
Yep, this fall Emery is going to accomplish even more great things, and I’m going to be there every single step of the way!
Wednesday, August 3, 2011
The girl's got moves...
We went to the zoo tonight. It was WILD WEDNESDAY. You know what's wild about Wednesday? The zoo stays open until 8, instead of the usual 5. Woohoo! I don't find our local zoo to be that exciting, and quite frankly neither does my girl. It's definitely for slightly older kiddos, and I'm sure when she's a bit older, Em will love to go weekly. She's going to love running, jumping, squealing, and twirling. Now, I do take issue with the gigantic sand boxes. I really have a hard time with the idea of Emery crawling, sitting and sifting sand that is left open for feral cats or wild animals to use. Gross!!
Anyway, I wish I had brought my camera tonight. Standing by the penguins we could hear music. Emery is always the first to hear music anywhere we go. She'll start dancing, and I begin to listen to my surroundings. Of course that's when I hear it too. Some song off in the distance. Tonight, as we rounded the corner and entered the plaza area with the dinky little cafe, the music grew louder. Three belly dancers were playing finger cymbals and dancing. They were passing out various instruments to some of the children. Emery insisted on having part of this! She spent the next ten minutes walking around the dancers, tapping her fingers together, swishing her tutu, and banging on a drum. Oh she was in Emery heaven! She couldn't have been more in her element or happier.
I cannot wait until I can get her into a dance class. She loves daddy's IPod and you should see the girl raise the roof in her carseat. Hysterical! Her three favorite songs currently are Justin Bieber's "Baby," Beyonce's "Single Ladies," and the Beatles "Twist and Shout." She definitely has eclectic taste. I've got just a few days left before heading back to work, and I'm going to make it my mission to catch her singing "Baby" on video. She does the cutest "baby oooooooohhhhhhh" with the sweetest scrunchy face. Man, I'm going to miss my days with her.
I could not be more proud of my daughter. She faces many challenges in her future. We all do; life is constantly providing opportunities to grow and flourish and rise above. There is no doubt my daughter can learn. She proves that to me every day. She is 28 months and is in the early stages of speech. I think she is easy to understand, but I do have that mommy ear. She says or approximates well over 60 words. She knows close to 100 signs. She answers questions; she chooses her clothes and shoes in the morning. She follows directions, as well as a sassy 2 year old will. She identifies things she sees, in books and in real life. So, no, there is no doubt for me. My daughter is capable of learning. Some things will come easy---like using the remote to turn on the tv in my room in the mornings after showing her one time. Some things will take longer and more practice, such as walking did. Isn't that all of us though? It takes me longer to memorize historical facts than it does to solve a calculus problem! So, Emery might face a few more challenges than some other kids, but I'll always be in her corner. I will see to it that she is just as proud of herself as I am of her!
Anyway, I wish I had brought my camera tonight. Standing by the penguins we could hear music. Emery is always the first to hear music anywhere we go. She'll start dancing, and I begin to listen to my surroundings. Of course that's when I hear it too. Some song off in the distance. Tonight, as we rounded the corner and entered the plaza area with the dinky little cafe, the music grew louder. Three belly dancers were playing finger cymbals and dancing. They were passing out various instruments to some of the children. Emery insisted on having part of this! She spent the next ten minutes walking around the dancers, tapping her fingers together, swishing her tutu, and banging on a drum. Oh she was in Emery heaven! She couldn't have been more in her element or happier.
I cannot wait until I can get her into a dance class. She loves daddy's IPod and you should see the girl raise the roof in her carseat. Hysterical! Her three favorite songs currently are Justin Bieber's "Baby," Beyonce's "Single Ladies," and the Beatles "Twist and Shout." She definitely has eclectic taste. I've got just a few days left before heading back to work, and I'm going to make it my mission to catch her singing "Baby" on video. She does the cutest "baby oooooooohhhhhhh" with the sweetest scrunchy face. Man, I'm going to miss my days with her.
I could not be more proud of my daughter. She faces many challenges in her future. We all do; life is constantly providing opportunities to grow and flourish and rise above. There is no doubt my daughter can learn. She proves that to me every day. She is 28 months and is in the early stages of speech. I think she is easy to understand, but I do have that mommy ear. She says or approximates well over 60 words. She knows close to 100 signs. She answers questions; she chooses her clothes and shoes in the morning. She follows directions, as well as a sassy 2 year old will. She identifies things she sees, in books and in real life. So, no, there is no doubt for me. My daughter is capable of learning. Some things will come easy---like using the remote to turn on the tv in my room in the mornings after showing her one time. Some things will take longer and more practice, such as walking did. Isn't that all of us though? It takes me longer to memorize historical facts than it does to solve a calculus problem! So, Emery might face a few more challenges than some other kids, but I'll always be in her corner. I will see to it that she is just as proud of herself as I am of her!
Friday, July 22, 2011
I know I'm going to have to let you grow up sometime...
...but it is just so hard! Of course I don't want you to be a baby anymore, and it makes me proud to watch you grow and develop, figure out who YOU are.
My mommy smarts hint at possible reasons that letting you grow up is hard.
Deep down I am probably just trying to protect you. Or maybe me? Your development is a little crazy, all over the map. Meaning, you haven't necessarily followed the typical trajectory, which is fine. It makes you unique and interesting! We have waited long, long months for you to achieve milestones, and we have celebrated all of your success! I cried the first time I saw you stand yourself up in the middle of the room.
This summer was challenging. You have the energy of a 2 year old, but until a few weeks ago you could not walk. You were limited, and it's hard to take a crawling/climbing 2 year old to the park. You wanted to play with your peers, but you were constantly being trampled. The children's museum is tough too. But we've made do, you and I. We have kept plenty busy, and you have become a walker. I couldn't be more proud of you. That was a tough milestone for me to watch you s..l...o...w...l...y achieve. As your momma, I got my hopes up time and time again. Your "delays" showed more clearly to those around you. And I just wanted you to be able to play and act like a 2 year old. We are finally getting there!! This intense need to physically protect you because I am not worried about your tiny fingers being trampled has ceased. Now I am just on the lookout for busted lips from falling.
Subconsciously maybe I am holding on to your baby stage. You are full on toddler now. I love it. I do. It is so much fun; it's pure exhaustion as well. I am ready for another baby; I am ready for you to be a big sister. We always said that you needed to be more independent before we could start the baby talk. I think you're there. It's hard though. I know lots of other moms have felt this way. I know I won't have to split my love. I know my love will just grow, but what about our alone time? How will that make you feel? And me? I know you will be an amazing big sister when that time comes.
Today was definitely one of those days when I am seeing just how grown up you are getting.
Today you....
sang parts of the chorus to Justin Bieber's "Baby"
identified 13 body parts when mom and dad asked.
requested to watch "Signing Times" and "Tasha (Backyardigans)"
walked from the front door to the garage.
took trash to the garbage can in the kitchen.
asked me to call grandma, and then located the phone to dial after I said we'd call later.
told me to "go" and "bye bye" at naptime and then put yourself to sleep, all by yourself!
brought me a diaper to change you.
picked to eat broccoli at dinner.
thanked our waitress when she brought our food at dinner.
picked out your outfit after much "hmmmmm..."ing (kinda annoying, but truly so cute!)
took of your shoes that were too small and said something that sounded like "I don't like these shoes."
laughed so hard that you tilted your head back, showing all your teeth, and slapped your leg.
picked out your new pillowcase for your new daycare.
told Ashley yes (signing) when you pointed to a pig and she said "pig."
helped push the cart at Target.
picked up and set down your cup at dinner without spilling it.
needed a night light (Momma realized you are scared of the dark).
asked me "What's that?" when I plugged in and turned on the night light.
took out your pacifier and blew me a kiss as you were putting yourself to sleep.
I could go on with so many more examples. Every day you are an amazing kid. I'm so lucky to have you in my life ladybug!
My mommy smarts hint at possible reasons that letting you grow up is hard.
Deep down I am probably just trying to protect you. Or maybe me? Your development is a little crazy, all over the map. Meaning, you haven't necessarily followed the typical trajectory, which is fine. It makes you unique and interesting! We have waited long, long months for you to achieve milestones, and we have celebrated all of your success! I cried the first time I saw you stand yourself up in the middle of the room.
This summer was challenging. You have the energy of a 2 year old, but until a few weeks ago you could not walk. You were limited, and it's hard to take a crawling/climbing 2 year old to the park. You wanted to play with your peers, but you were constantly being trampled. The children's museum is tough too. But we've made do, you and I. We have kept plenty busy, and you have become a walker. I couldn't be more proud of you. That was a tough milestone for me to watch you s..l...o...w...l...y achieve. As your momma, I got my hopes up time and time again. Your "delays" showed more clearly to those around you. And I just wanted you to be able to play and act like a 2 year old. We are finally getting there!! This intense need to physically protect you because I am not worried about your tiny fingers being trampled has ceased. Now I am just on the lookout for busted lips from falling.
Subconsciously maybe I am holding on to your baby stage. You are full on toddler now. I love it. I do. It is so much fun; it's pure exhaustion as well. I am ready for another baby; I am ready for you to be a big sister. We always said that you needed to be more independent before we could start the baby talk. I think you're there. It's hard though. I know lots of other moms have felt this way. I know I won't have to split my love. I know my love will just grow, but what about our alone time? How will that make you feel? And me? I know you will be an amazing big sister when that time comes.
Today was definitely one of those days when I am seeing just how grown up you are getting.
Today you....
sang parts of the chorus to Justin Bieber's "Baby"
identified 13 body parts when mom and dad asked.
requested to watch "Signing Times" and "Tasha (Backyardigans)"
walked from the front door to the garage.
took trash to the garbage can in the kitchen.
asked me to call grandma, and then located the phone to dial after I said we'd call later.
told me to "go" and "bye bye" at naptime and then put yourself to sleep, all by yourself!
brought me a diaper to change you.
picked to eat broccoli at dinner.
thanked our waitress when she brought our food at dinner.
picked out your outfit after much "hmmmmm..."ing (kinda annoying, but truly so cute!)
took of your shoes that were too small and said something that sounded like "I don't like these shoes."
laughed so hard that you tilted your head back, showing all your teeth, and slapped your leg.
picked out your new pillowcase for your new daycare.
told Ashley yes (signing) when you pointed to a pig and she said "pig."
helped push the cart at Target.
picked up and set down your cup at dinner without spilling it.
needed a night light (Momma realized you are scared of the dark).
asked me "What's that?" when I plugged in and turned on the night light.
took out your pacifier and blew me a kiss as you were putting yourself to sleep.
I could go on with so many more examples. Every day you are an amazing kid. I'm so lucky to have you in my life ladybug!
Thursday, July 21, 2011
Daycare dramas...
So I found my “birth story” on my flash drive. It needs some work; all you anxious readers will have to just wait a bit longer. When I started it initially, I was hoping to write a book some day. Maybe someday I will, but I got sidetracked. Being a working mom in grad school will do that to you. I set it aside because I had powerpoints to make and research articles to write. Last year one of my classes required us to write a “Defining Moments” paper. Naturally, that was Emery. I tweaked my birth story, took out the details, summed it up and analyzed why becoming a mom was a defining moment in my life. In my opinion it’s a strong piece of writing, but I’m trying to decide if I want to “publish” as is, or if I want to combine the two pieces of work to create one HUGE pieces of work. There are certainly advantages to both choices, as is always the case! If I combine them I may have to publish them in separate pieces, just so as not to overwhelm any readers. Combined they currently reach 9,000 words. That’s a lot, in case you were wondering!
While I was trying to make a decision about how or what to write, I was cleaning out my email inbox. Such a daunting task. I tend to keep a lot of emails that are of importance. Eventually roadrunner tells me that I’m operating at 77% capacity and I’m left to dwindle the list again. I came across several daycare emails, and I thought “This is perfect focus for tonight.”
Daycare has been an issue—from the beginning. Let me be clear. I love my job, and I’m good at it. I promise. I never wanted to be a stay-at-home mom. Then I met my daughter. Most days being away from her doesn’t overwhelm me. I know how lucky I am; I get holiday and summer breaks. I can be home fairly early most afternoons. Every once in a while, that guilt creeps up. This past August Emery started at a daycare center part time. We felt good about the arrangement. She’d be there two days a week, and she’d be home the other three. She would get the social time with her peers, and they could model age-appropriate toddler type behaviors. We wouldn’t be throwing her to the wolves, metaphorically of course, in regards to her immune system. The first week was so rough. Poor baby cried all day for the first two weeks. I felt awful; I doubted our decision. It hurt me to see her so uncomfortable and sad. But the girls working in her room were sweet. They wanted to learn about Emery and Down syndrome and how it affects her development.
Unexpectedly they were all let go. I was more than a bit surprised because Emery had come to love the place and the teachers. The director gave me her reasoning for the dramatic change in staff; it seemed legit, and I felt like she and I had a good working/professional relationship. But issues started to tiptoe into our days there. I had concerns, and while I addressed them nothing seemed to change. Emery seemed to earn an incident report or more every day she was there. Somehow the only non-walker in the room was scratching and pulling hair several times a day. I pointed out to the head teacher and director that I didn’t understand where this behavior was coming from all of a sudden. Lots of blah, blah, blah from them. I really tried to work things out, but my resentment toward the teachers in her room continued to build. It was such petty nonsense—“She scratched a teacher’s nose today.” Give me a break! Stop carrying her so much, maybe that’s A) why her walking progress has stopped and B) she’s trying to tell you to put her down, since she doesn’t have the words to do so. It was ridiculous stuff like that. We battled about it for months. It never really changed. I was irate the day they informed me that Em had more incident reports than some kids and fewer than others. Really? She was only there 16 hours a week; you mean to tell me that in 16 hours she was that much worse than other 1 year olds (at the time) who spent 40+ hours a week there. Whatever. That’s about when the reports stopped. Maybe I made my point? Two months later I was told by the director that the head teacher was reporting other families were complaining about Emery’s bullying. Meanwhile, I had watched other children knock Em over on purpose and then run away with her toy. No teachers seemed to notice. We were reaching our breaking point.
In March I popped into daycare to find an understaffed room with one teacher changing a diaper behind a half wall. Emery and two other kids were in the room. While the teacher could see, she could literally do nothing because of diaperless child and the half wall in her way. As I approached the classroom I watched, what felt like in slow motion, as Emery reached up and yanked a little girl’s hair. It was hard, and she cried. I don’t blame her. I picked up my pace to intervene, only to watch the teacher yank Emery up from the floor by her tiny little arms and yell in her face. You should have seen the look of shock when she realized I was standing right there. Immediately her tone and word choice changed. My heart sank. I was watching my biggest worry come true. You put your trust in strangers, and you just hope your babes are safe. How could I ever feel like Emery was being treated appropriately and with respect there again? I was sick to my stomach. I demanded to speak to the director, who was on a medical leave. I was so disappointed with that conversation. I understand she was in a tough spot as an employee, but I was disheartened at what she had to say to me and how she said it. She promised a meeting with her, Em’s therapists, and the classroom teachers. Five weeks later, she was still on leave, I had heard nothing from her. We pulled Emery from their care. It was tough; I wanted to believe in them. And I didn’t want to pull Em from some place she loved, but clearly they had no desire to work with me. I had become one of “those” parents; I’ve seen it before. You say the right things to her face, but when she’s not around it’s not pretty. I was not okay with them being unwilling to hear what I had to say as her mother and the expert on Ds. I did not need their excuses, so I cut my ties.
Looking back, I am sad Emery doesn’t spend two days a week with her peers, but it couldn’t have been any more right for us to leave! She has been healthy since her last day there. They were germy looking kids, and I know kids can be germy, but these kids always looked sick! Since she was finally healthy her development started to grow again. She added more ASL vocabulary; she says more words. And she’s walking, well, toddling around everywhere!
Emery’s been at home since the end of April, thanks to Auntie Ashley for all that she’s sacrificed. I am thankful for my summer break with my lovebug, and I’m even more thankful for my sister’s sacrifices to help provide care for Emery. I started looking for daycare in March, planning to start in August. Holy moly! What a headache! We needed fulltime care, and daycare centers in can be pretty pricey.
We found one daycare center that we liked and that was in our budget, and I was excited initially. Granted I had to hunt the director down because she did not return our initial phone call. I chalked it up to losing the message or being busy with end of the year stuff. No big deal; I called back. We got things squared away and scheduled a tour. They seemed a bit timid about taking on Emery’s disabilities, but I assured them she was not all that different from other kids. She was just reaching her developmental milestones at a slower pace, meaning that she’d still be on a sippy cup instead of an open cup, and that we were not even discussing potty training yet. I was told she could not move to the next room (3 year olds) until she was totally accident free. I nodded and agreed, all while laughing inside. It didn’t matter to me; truthfully, I just needed care for August through May. She will probably be going to preschool through the school district the following fall, and what did I care if she stayed with the 2 year olds for three months past her third birthday.
They had two openings, and we were third on the waitlist. One family had been on the waitlist for almost nine months, and the director did not expect them to still need care. She explained that she would call with either a yes or a no the first week in June. During the second week of June I called because I had not heard from her, do you think she has returned my call? That answer is a no. Here’s the kicker—they have another open spot in that room again to start in a few weeks. Logically speaking, say the two ahead of us accepted both spots, that means we are now first in line. Have I heard from the director? Of course not. I’m not the paranoid type, but I’m pretty certain my beautiful daughter is being discriminated against. I cannot prove it because they can always make some ridiculous excuse, of course. Just say no! Just say from the beginning you don’t think this would be a good fit. I have so much more respect for that. Blowing me off just makes me mad.
Do you think that’s the only time daycare has blown me off this summer???? We turned to in-home daycare in hopes of eliminating drama and exposure to excessive germs (5-7 kids, rather than 10+). I was in contact with four women, phone and email, who all said they had openings and wanted to meet, go over contracts, answer questions, etc. Two stopped returning emails after the initial conversation when I tried to set up a face-to-face interview. One never returned my phone call, or my email to verify she received my voicemail. The fourth lady was plain crazy!
She had an excellent website, and our first phone conversation was 40 minutes. We chatted about daycare, Emery, and her life. It was nice. She said she wanted to meet us if we thought she might be a good fit. She picked the day and time. She said more than once that she was sure she wanted to care for Em, if we’d have her. Hubby, Em, and I showed up at her place on designated day and time. As we approach the house her carport was full of junk. It was a total mess. I told Nick I was having reservations now; he calmed me. She frantically appeared at the door claiming her daughter was ill and she needed to take her to an urgent care clinic immediately. She apologized profusely for not calling in advance, but she stated she had been preoccupied with caring for her daughter. Of course we wished her well and left after she asked that I call back in a few days. In the meantime, her website disappeared. Like vanished!! No google searches were locating that bad boy. So I called three days later, but this time I called from my home phone instead of my cell phone. Not for any particular reason, but maybe subconsciously? She seemed surprised when I said who it was. She was friendly and apologetic. I asked about her website, and she said she had been doing some work to it, and would finish up that night and republish it. She selected the next date and time for another meeting. We went to her house again; this time I told Nick I had a bad feeling about it all. Her car was in the driveway with the windows down. Her door was cracked and we could hear people inside. We knocked and rang the doorbell for 15 minutes, no answer. I called her number and it was mysteriously out of order. We left, angry and annoyed. The website never reappeared, still hasn’t to this day. I told Nick it felt like a scam, except she didn’t get anything from us. Not last names, not deposit checks, zilch. It was so strange.
With these circumstances it’s hard not to feel like Emery’s extra chromosome has brought out the crazy in people. Do they think they are letting me down easy by just ignoring me? That is worse! If you are unwilling to experience something new, or understand that disabilities don’t always mean major changes, then I don’t want you watching my kid anyway. Ignoring my calls, emails, and knocks is letting yourself off the hook easy. You might think that you are trying to spare my feelings, but really, you just don’t have the courage to look me in the eye and tell me that you are discriminating against my daughter. It is easier to have respect for an individual who states up front their concerns, worries, and fears. These can be addressed. How about a trial basis? Being close-minded to my daughter, to our family—well that is something YOU have to live with!
While I was trying to make a decision about how or what to write, I was cleaning out my email inbox. Such a daunting task. I tend to keep a lot of emails that are of importance. Eventually roadrunner tells me that I’m operating at 77% capacity and I’m left to dwindle the list again. I came across several daycare emails, and I thought “This is perfect focus for tonight.”
Daycare has been an issue—from the beginning. Let me be clear. I love my job, and I’m good at it. I promise. I never wanted to be a stay-at-home mom. Then I met my daughter. Most days being away from her doesn’t overwhelm me. I know how lucky I am; I get holiday and summer breaks. I can be home fairly early most afternoons. Every once in a while, that guilt creeps up. This past August Emery started at a daycare center part time. We felt good about the arrangement. She’d be there two days a week, and she’d be home the other three. She would get the social time with her peers, and they could model age-appropriate toddler type behaviors. We wouldn’t be throwing her to the wolves, metaphorically of course, in regards to her immune system. The first week was so rough. Poor baby cried all day for the first two weeks. I felt awful; I doubted our decision. It hurt me to see her so uncomfortable and sad. But the girls working in her room were sweet. They wanted to learn about Emery and Down syndrome and how it affects her development.
Unexpectedly they were all let go. I was more than a bit surprised because Emery had come to love the place and the teachers. The director gave me her reasoning for the dramatic change in staff; it seemed legit, and I felt like she and I had a good working/professional relationship. But issues started to tiptoe into our days there. I had concerns, and while I addressed them nothing seemed to change. Emery seemed to earn an incident report or more every day she was there. Somehow the only non-walker in the room was scratching and pulling hair several times a day. I pointed out to the head teacher and director that I didn’t understand where this behavior was coming from all of a sudden. Lots of blah, blah, blah from them. I really tried to work things out, but my resentment toward the teachers in her room continued to build. It was such petty nonsense—“She scratched a teacher’s nose today.” Give me a break! Stop carrying her so much, maybe that’s A) why her walking progress has stopped and B) she’s trying to tell you to put her down, since she doesn’t have the words to do so. It was ridiculous stuff like that. We battled about it for months. It never really changed. I was irate the day they informed me that Em had more incident reports than some kids and fewer than others. Really? She was only there 16 hours a week; you mean to tell me that in 16 hours she was that much worse than other 1 year olds (at the time) who spent 40+ hours a week there. Whatever. That’s about when the reports stopped. Maybe I made my point? Two months later I was told by the director that the head teacher was reporting other families were complaining about Emery’s bullying. Meanwhile, I had watched other children knock Em over on purpose and then run away with her toy. No teachers seemed to notice. We were reaching our breaking point.
In March I popped into daycare to find an understaffed room with one teacher changing a diaper behind a half wall. Emery and two other kids were in the room. While the teacher could see, she could literally do nothing because of diaperless child and the half wall in her way. As I approached the classroom I watched, what felt like in slow motion, as Emery reached up and yanked a little girl’s hair. It was hard, and she cried. I don’t blame her. I picked up my pace to intervene, only to watch the teacher yank Emery up from the floor by her tiny little arms and yell in her face. You should have seen the look of shock when she realized I was standing right there. Immediately her tone and word choice changed. My heart sank. I was watching my biggest worry come true. You put your trust in strangers, and you just hope your babes are safe. How could I ever feel like Emery was being treated appropriately and with respect there again? I was sick to my stomach. I demanded to speak to the director, who was on a medical leave. I was so disappointed with that conversation. I understand she was in a tough spot as an employee, but I was disheartened at what she had to say to me and how she said it. She promised a meeting with her, Em’s therapists, and the classroom teachers. Five weeks later, she was still on leave, I had heard nothing from her. We pulled Emery from their care. It was tough; I wanted to believe in them. And I didn’t want to pull Em from some place she loved, but clearly they had no desire to work with me. I had become one of “those” parents; I’ve seen it before. You say the right things to her face, but when she’s not around it’s not pretty. I was not okay with them being unwilling to hear what I had to say as her mother and the expert on Ds. I did not need their excuses, so I cut my ties.
Looking back, I am sad Emery doesn’t spend two days a week with her peers, but it couldn’t have been any more right for us to leave! She has been healthy since her last day there. They were germy looking kids, and I know kids can be germy, but these kids always looked sick! Since she was finally healthy her development started to grow again. She added more ASL vocabulary; she says more words. And she’s walking, well, toddling around everywhere!
Emery’s been at home since the end of April, thanks to Auntie Ashley for all that she’s sacrificed. I am thankful for my summer break with my lovebug, and I’m even more thankful for my sister’s sacrifices to help provide care for Emery. I started looking for daycare in March, planning to start in August. Holy moly! What a headache! We needed fulltime care, and daycare centers in can be pretty pricey.
We found one daycare center that we liked and that was in our budget, and I was excited initially. Granted I had to hunt the director down because she did not return our initial phone call. I chalked it up to losing the message or being busy with end of the year stuff. No big deal; I called back. We got things squared away and scheduled a tour. They seemed a bit timid about taking on Emery’s disabilities, but I assured them she was not all that different from other kids. She was just reaching her developmental milestones at a slower pace, meaning that she’d still be on a sippy cup instead of an open cup, and that we were not even discussing potty training yet. I was told she could not move to the next room (3 year olds) until she was totally accident free. I nodded and agreed, all while laughing inside. It didn’t matter to me; truthfully, I just needed care for August through May. She will probably be going to preschool through the school district the following fall, and what did I care if she stayed with the 2 year olds for three months past her third birthday.
They had two openings, and we were third on the waitlist. One family had been on the waitlist for almost nine months, and the director did not expect them to still need care. She explained that she would call with either a yes or a no the first week in June. During the second week of June I called because I had not heard from her, do you think she has returned my call? That answer is a no. Here’s the kicker—they have another open spot in that room again to start in a few weeks. Logically speaking, say the two ahead of us accepted both spots, that means we are now first in line. Have I heard from the director? Of course not. I’m not the paranoid type, but I’m pretty certain my beautiful daughter is being discriminated against. I cannot prove it because they can always make some ridiculous excuse, of course. Just say no! Just say from the beginning you don’t think this would be a good fit. I have so much more respect for that. Blowing me off just makes me mad.
Do you think that’s the only time daycare has blown me off this summer???? We turned to in-home daycare in hopes of eliminating drama and exposure to excessive germs (5-7 kids, rather than 10+). I was in contact with four women, phone and email, who all said they had openings and wanted to meet, go over contracts, answer questions, etc. Two stopped returning emails after the initial conversation when I tried to set up a face-to-face interview. One never returned my phone call, or my email to verify she received my voicemail. The fourth lady was plain crazy!
She had an excellent website, and our first phone conversation was 40 minutes. We chatted about daycare, Emery, and her life. It was nice. She said she wanted to meet us if we thought she might be a good fit. She picked the day and time. She said more than once that she was sure she wanted to care for Em, if we’d have her. Hubby, Em, and I showed up at her place on designated day and time. As we approach the house her carport was full of junk. It was a total mess. I told Nick I was having reservations now; he calmed me. She frantically appeared at the door claiming her daughter was ill and she needed to take her to an urgent care clinic immediately. She apologized profusely for not calling in advance, but she stated she had been preoccupied with caring for her daughter. Of course we wished her well and left after she asked that I call back in a few days. In the meantime, her website disappeared. Like vanished!! No google searches were locating that bad boy. So I called three days later, but this time I called from my home phone instead of my cell phone. Not for any particular reason, but maybe subconsciously? She seemed surprised when I said who it was. She was friendly and apologetic. I asked about her website, and she said she had been doing some work to it, and would finish up that night and republish it. She selected the next date and time for another meeting. We went to her house again; this time I told Nick I had a bad feeling about it all. Her car was in the driveway with the windows down. Her door was cracked and we could hear people inside. We knocked and rang the doorbell for 15 minutes, no answer. I called her number and it was mysteriously out of order. We left, angry and annoyed. The website never reappeared, still hasn’t to this day. I told Nick it felt like a scam, except she didn’t get anything from us. Not last names, not deposit checks, zilch. It was so strange.
With these circumstances it’s hard not to feel like Emery’s extra chromosome has brought out the crazy in people. Do they think they are letting me down easy by just ignoring me? That is worse! If you are unwilling to experience something new, or understand that disabilities don’t always mean major changes, then I don’t want you watching my kid anyway. Ignoring my calls, emails, and knocks is letting yourself off the hook easy. You might think that you are trying to spare my feelings, but really, you just don’t have the courage to look me in the eye and tell me that you are discriminating against my daughter. It is easier to have respect for an individual who states up front their concerns, worries, and fears. These can be addressed. How about a trial basis? Being close-minded to my daughter, to our family—well that is something YOU have to live with!
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