Perfection

Happy New Year Everyone!

The last few days have been great, the apartment is so clean, tidy and organized. Chuck decided to get one of those robot vacuums. I laughed, but it actually keeps the floor nice and clean for Skyler. It's so much easier to let it go once a day to pick up all the crumbs and other bits that he might otherwise be putting in his mouth. Not that we're extremely messy people, but Skyler does like to fling food off of his highchair, and sweeping doesn't always get everything.

Aside from it looking so nice in here and us being able to keep up with everything, I'm spending so much more time with Skyler. I've been able to feed him everyday, work on baby signs (he actually signed "all done" for the first time in the tub the other day!) and read him stories, sing him songs, dance with him. We've been doing so much, he's been learning so much! How to clap, how to sign for things, how to stand by himself (still very shaky, but getting better with tons of enthusiastic encouragement), how to use a spoon to feed himself. I honestly never want to go back to work. Sigh.

Yesterday I gave the monster his first haircut! No more baby mullet! Haha, he looks much cuter as you can see in the picture. His hair was driving me nuts, but daddy didn't want to part with it. Next to get a haircut is mommy I hope. Yesterday we went shopping and I finally got something for myself. I needed new shoes so badly, the ones I have are completely worn out in the heel, so I used my gift card from Christmas to buy some cute black and purple ones. I also installed Windo.ws 7, which so far is alright. It looks pretty neat, and I like some of the new apps like the snipping tool and the sticky notes.

I'm excited for church on Sunday, we went last Sunday too of course. The sermon was all about yoga and spirituality, we had a yoga instructor come in and he even had us doing a bunch of different positions and meditations, I really enjoyed it. This Sunday is a sermon about poetry, entitled "How should we live our lives?" because it really is an open ended question. I think everyone has a slightly different take on it honestly.

The other day I sat Skyler down on the kitchen floor with a piece of paper and I dabbed on some finger paint, he used to just sit there and I would put his fingers in it, but this time he saw me put down the paint and he leaned in immediately and started spreading it all over the paper. It was so much fun to watch him enjoying finger painting so much, and doing it all by himself.

Today the most exciting thing happened, after feeding him breakfast (a whole banana and some vanilla yogurt) I sat down with him in his living room and I moved back so that I was pretty far away (in terms of how close we usually are) and as a test I made eye contact with him and moved my hand silently from side to side and up and down. He tracked my every movement! We've been noticing that it seems like he is seeing further, but I am a hundred percent sure of it now.

I actually marked my place with a diaper and went and grabbed my measuring tape. He can see and track objects that are 42-45 inches away from him! This is honestly amazing to me. He blows my mind everyday. For the longest time he could only see us if we were about 24 inches away. Yesterday Chuck went to give him a bottle and as he walked into the room Skyler was looking at the bottle and showing signs that he saw it. He was at least 4 feet away.

I know I'll have to go back to work soon, but right now, life is just perfect..

Skyler Living It Up

Skyler taking his first ride in the sled grandma and grandpa gave him.

Checking out his new chair in his little living room area.

Skyler watching tv.

Trying to grab Winn.ie the Po.oh.



I love those moments. Watching him reach out to touch the bear on tv reconfirms for me just how much he can actually see. It might not be much, but it's better than nothing. And yes I let my kid watch tv that close to the screen. Haha.

Fighting For Our Children's Rights

I've been following this story on the CBC for a while and if you read through the comments (many as they are) you may be able to pick out which ones are mine. This woman is fighting to put in place the supports her daughter will need when she enters school. As always there are people who are opposed to this idea. The "innocent taxpayers" who abhor the idea of paying for someone else's special needs child to have the interventions to save her life made available to her in the public school system. Sometimes I just don't understand people...

Merry Christmas Everyone!

Sky guy made out like a bandit at his grandma and grandpa's christmas dinner last night (they celebrate it on Christmas Eve). He got a new sled, a stuffed dog which he is terrified of, a set of 3 ducks on a string that waddle and quack when you pull them, a xylophone which admittedly is mommy's favourite of the night, and a new sleeper. I also got a package in the mail yesterday from my aunt in B.C. She sent him a lot of really adorable clothes, which he will grow into by next winter, and a box of chocolate chip cookies, which he will enjoy this winter, possibly with some help from mom.

Today is my side of the family's Christmas celebrations. It's my first year with my parents separated so this should prove interesting. I have to go to my mom's for dinner, and my dad wants me at my nana's afterwards. I've got my fingers crossed that it all works out without too many problems..

I've started making a list of all the stuff we need to get once the mad holiday rush is over. Which I suppose I should explain to my non-Canadian friends. I just learned last year actually that you guys don't have Boxing Day. The day after Christmas all the stores put everything on sale really really cheap and it's like a crazy mad rush/stampede for people to buy things. The malls are absolutely insane for pretty much a week surrounding Christmas, before and after. I'm hoping I'll be able to go shopping Sunday or Monday without getting trampled as I have a few things I need to get and now I have some Christmas money to spend. I also sold my dining room table yesterday since we've decided to use a smaller one for now. So that was an extra hundred bucks in my pocket.

I must admit being home with Skyler is hard, not because I don't love every second of being home, but because he is calling for me all day everyday, he wants to be snuggled and held and have his mommy and no one else. Which is not the hard part. The hard part for me is knowing that I have to go back to work in a few days and I won't be able to be with him every day anymore. I'm starting to want to stay home with him. I want to be the one holding him every time he falls or needs hugs and kisses. I love watching him play and grow and learn. I don't see him enough when I work these stupid 11 hour days, not to mention I don't get paid for 2 and a half hours of it. When I go back in January I think there are some serious questions I need to ask, and if I don't get the answer I need then things may have to change a bit.

Merry Christmas everyone, I hope you are all well and enjoying your families.

Best Christmas Gift!

He gained an entire pound since December 1st!! (he weighed in at 14 pounds at his endocrine appt.) Ladies and Gentlemen, the baby who has weighed 14 pounds for the last 4 months is finally a hefty 15 pounds 6 ounces at 13 months old!

That is all.

Neat & Tidy

It's a good thing we rearranged his stuff when we did because he woke up early the next morning and decided he was completely ready to crawl and pull up on furniture and walk around it. Yesterday for the first time, I plopped him in the middle of the room not near any toys, he crawled over to the living room table and pulled himself up, (laughing triumphantly of course) and walked around it, trying to eat the table frame the entire time. I guess that's it, he's mobile now. We're screwed.

As for his zebra, he was standing at the end table next to the zebra last night, he let go momentarily and bumped his head on Mr. Zebra. He then got back up, pulled himself to stand at the table, reached over and gave Mr. Zebra a good shaking. He went at it for a solid 10 minutes. I pity anyone who crosses my child's path. Poor zebra, he must have head trauma after all that shaking. I think Sky got him back pretty good. And we got a video of it. We were both cracking up, it was pretty funny.

After tackling his area yesterday I went tornado on the apartment with Chuck's help. We purged a lot of crap, reorganized so much stuff, and now our living room is as nice as his. Our bookshelf is just as pretty as his, and our storage closet is no longer throwing things at us as soon as we open the door. Everything is put away neat and orderly. Some things went to the consignment shop, others to charity. I'm quite happy with the way my apartment looks now I must say. The bedroom however.. Let's just not go there. I suppose that should be the next project.

Today we're going to try and get Skyler weighed and measured. I'm hoping, hoping, hoping (fingers crossed) that he's grown at least a teeny tiny little bit. I've got my fingers crossed that now that he's not on such a high dose of steroids, that he'll begin to grow like he should.

Midnight Decluttering

So it is 1:40am and we just returned from W.alm.ar.t which is conveniently open 24 hours for the Christmas insanity. In case you are wondering we were most definitely not Christmas shopping at all. As I was sitting in my living room I realized I was tired of looking at a giant mountain of toys. I remembered my former plans to create a toddler living room for Skyler and decided perhaps since he's now becoming mobile I should start putting that plan into action.

As you may remember from previous pictures my living room looked something like this:

(ignore adorable baby playing with plastic bottle if you will)

$32 later it now looks like this:


The zebra and the blue car will soon be leaving us (put into storage for the time being until Skyler is ready to use them), the red one and the musical table will be moved and I will be placing a toddler couch along the wall that the zebra is currently against. The musical table will likely be in front of that as sort of a baby coffee table, except without any coffee.

Anyway now his part of the living room is making the adult part of the living room look bad. However, I am still in love with it, I'm thinking of moving to his side of the room since it looks so much neater. Honestly I love the shelf unit idea. The top box has his stuffed animals and the bottom is all his plastic and heavier toys. And I can finally have his books accessible to him. Before they were up on our bookshelf which is much too high for him to reach. I used to have to take them down one at a time just to read him a story.

There you have it. My midnight decluttering project. Oh I also managed to crochet an entire scarf which is as long as I am tall. All this is in one day. Sadly this is probably the most productive I've been in a while.

Sunday Morning

If you know me in real life then you know I have strong opinions about the church and mainly how much I dislike being inside one. BUT I discovered a church that is different than the rest. I remember going to a Chri.stian church when I was a child with my grama, where the most positive things I gained were some donuts and a cup of apple juice and the negative things were fears of G.od and going to hell for all eternity. (No offense to anyone, that's just what I got out of church as a small child).

Today I packed up my family and we headed to the First Unitarian Universalist Church where all beliefs are respected and the core values are love, respect, and asking questions on your own spiritual path wherever it may lead you. The service was beautiful! There was lots of songs, the speaking parts were meaningful to us and pretty short (ten minutes at most) there were several different speakers, telling stories and leading us in meditation. I loved that there was meditation! They spoke of the importance of Winter Solstice and that it is a time of rest and pause and invited us all to pause, take a deep breath, close our eyes and take a few quiet moments together.

The children put on a pageant, they sang songs and there were people playing instruments (guitar, piano, bass, etc). The play they put on was so cute, it was about a lady who watched the children waiting for the school bus each day by a big fir tree and she noticed one little girl who had no mittens. So she went home and took our her yarn scraps and knitted some mittens for the little girl and left them on the fir tree the next morning. She watched with delight as the little girl found the mittens and put them on. (The stage was set with a big artificial tree) The kids in the play stopped to sing a song, and invited everyone in the congregation to come up and put the scarves, hats, mitts and everything else they wanted to donate onto the tree. They even had extra mittens to put on the tree for people who would like to, but forgot to bring something (a lovely lady handed some to Chuck and Skyler). They take the mittens and scarves and hats to a charity for children after the service I was told. It was beautiful! I wish I had known, I would have crocheted something.

And as for the people, they were so friendly and welcoming! Everyone came up to say hello and comment on how cute and well behaved Skyler was. Everyone had a cheerful "good morning!" for us. Even the lady next to me said good morning as I sat down and chatted with me at the pauses during service. A lady behind me tapped my shoulder to say hello and comment on the service. And afterwards lots of people came up to welcome us and remark on how cute our baby was. Even the reverend (a lovely lady) came up to us to say hello and that she was glad we came. She told us the baby is more than welcome, and she doesn't mind "baby noises" at all during the service. She said if he is more comfortable we are welcome to walk him around in the church or the foyer (or wherever we'd like) during the service.

So yes for the first time ever I can say I enjoyed church, and in fact I want to go back next week. I definitely wouldn't mind being a member of this congregation at all.

In other news, my little monster learned to hold his own bottle last night! It only took what seemed like forever, but he's doing it on his own now. OH and I'm on winter break! Woohoo! I hope you are all as well as I am today. Anyhow I must go start rushing around to get things ready for tonight's dinner.

Happy Holidays Everyone!

It's Almost Here!

Thank you everyone for the wonderful advice and ideas on the last post. Today I want to give a quick update before I run off to get things done before tomorrow's Winter Solstice celebration with friends. For Skyler last year I crocheted him a sweater and a hat for his Winter Solstice/Yule present. This year I made a blanket for Chuck, Skyler and myself. It's one of those knotted fleece blankets. I must say I love how it turned out. I'll have to take a picture of it tomorrow after Chuck and Skyler unwrap it.

And now I give you Skyler the King of the toy kingdom:

(I feel it's important that you know that this is only about a fifth of his toys.)

Cast Aside

I have to tell you a secret. I have 17 kids that I am with almost the entire day. And I love them all, they are awesome, crazy, fun, annoying, silly, smart, wonderful little individuals. But to be completely honest I have a soft spot for the special needs kids. It's not to say that I don't love my other kids and show them all the care and respect that they definitely deserve, but I do feel more connected with the ones who need a bit more support. Sometimes I can't help but just pull one of them in for a hug. It's probably because I am a parent to a child with special needs, but I just can't help but feel something for them.

It hurts sometimes to see that the other kids just don't understand the Autistic boy, that sometimes they ignore him even when he is calling their names and tapping them on the shoulder because he would like to ask if he can play. Sometimes it drives me crazy when the ADHD one is racing around the room unable to sit still for two seconds, and falling off his chair everytime I turn around because he just keeps tipping it, but I love him. I love them for being themselves, and I wish sometimes that the others were more accepting, more understanding. I try to help them understand why their classmate repeated to them 4 times that they needed to be quiet during the story, and why he doesn't like when they do certain things or why he gets to have his own special toys. But I am finding it hard. How do I tell the other children that he is different?

I have done the whole my child is different than you because he can't see, but you are different than him because you have blond hair, and he has brown hair, or you are different because you are a boy and she is a girl. I have done the whole we are all different and unique thing, but I can't bring myself to do it with our Autistic boy. I don't know how to tell the other kids that Johnny* is different and that's why he gets special toys or that's why he gets to do different activities or why he repeats things sometimes. I usually just tell them that it's okay, they don't need to worry about it, he is just expressing himself in his own way and that is fine. Or that his toys are from home.. They know he is different, I can see it in their eyes and they way they treat him but they don't understand. And I don't want to alienate him and say in front of him how he is different than them or that he has Autism..

Yesterday I had one of our kids yelling out over and over "Jamie's dad is dead! Jamie's dad is dead! Did you know Jamie doesn't have a dad because he's dead?" of course I had to put a stop to that, because it's not a pleasant thing to be reminded of or to be yelling out across the room. But I also understand that these kids are five they are trying to figure out their world, they are learning new concepts and trying to understand them, and death is one of them. Luckily Jamie* wasn't extremely upset by the other kid screaming it out, but I wouldn't blame him if he had been upset. To come to the point I most definitely don't want my kids screaming across the room that Johnny is Autistic. And I am sure that at some point it would happen, plus how to explain what Autism is to a 4 or 5 year old?

In other words, someone help me please if you have some idea of how to handle this situation I would love to hear it. When it comes to blindness hey no problem, I can explain that one to the kids easy enough. But Autism is a pervasive developmental disorder that ranges and varies so much it's even hard for most adults to understand, let alone a child. I love these kids, I know it will take a lot more maturity and age for them to care about or feel the same way as I do about the special ones in our lives, but I want to start them down the right path now while they are young. I don't want them to be the teenagers who laugh at the special needs kids because they just don't get it.

*Not their real names obviously.

One Year Ago

Today Trish's post over at Fertile Hope reminded me of what I was going through this time last year. In fact I wrote a blog post exactly one year ago today, that sums up how I was feeling about having a baby in the NICU. And at this point last year I was only half way through the NICU stay. Sometimes when I look back I'm completely amazed that we made it through at all. The NICU is not an easy thing, and if you have lived through that experience as a parent you will know exactly what I mean.

All I know is that I don't take my son for granted. We worked hard to get him home and do the best we could for him. And we're so lucky to have him here today, growing up and thriving and smiling and being his wonderful little self.

Tonight is our YMCA Christmas party. I'm kind of excited if only because the food is usually good at the training sessions so I'm hopeful the dinner will be catered by the same people. Instead of charging a fee they ask that you donate some food to the Christmas Cheer Board which I think is an excellent idea.

Last night we went on a hayride as our Christmas party for my centre. It was fun even though it was freezing. The horses were gigantic, afterward there was a bonfire and some hot chocolate, which wasn't actually hot by that point, but it was good nonetheless. Afterward my work friend came back to my place and we played ro.ck b.and until she had to go home. It was a good night.

But my little monkey is making monkey noises because I'm not feeding him his banana fast enough, so I had better get on that.

Only One Week To Go

Wow, life has a crazy way of dragging you kicking and screaming into the fray without so much as a how do you do. What I mean is 4 and 5 year olds are insane, and I've figure out that they are pretty much just small drunk people whose job it is to make you pull out all your hair in a frenzy while they surround you yelling your name and demanding you perform some menial task for them right this very instant. Honestly, I love love love my job and my kinders, but oh man. They are so excited for the winter break and Christmas, and they are so high energy right now (which the group of kids that I take care of are high energy already, such as mr ADHD and the rest) that I am standing in the middle of the room as a whirlwind of children pass by and I hopelessly try to remind them to use their walking feet and their indoor voices until I finally snap and make them all sit and have a bit of quiet time because they just aren't listening or respecting their teacher (me) or their friends the way they should be.

My mantra, which I repeat in my head as I go about my day is "I love my kids, I love my kids, I love my kids." Sometimes followed by "they'll go home at the end of the day. Only 10 more hours until they go home."

Though not all of the day makes me insane, there are always the lovely moments when they help their friends or use their nice words to solve problems or when one of them comes to me to say they've drawn me a picture to take home. I love their hugs and that they fight over who gets to be my partner when we line up. I love the smiles, the laughter, the giggles, the way they light up when they learn something new. Even though I am losing my mind at the moment, it's all worth it in the end. I know this.

Skyler is amazing, on top of saying mama, he is crawling (not very far yet as he doesn't see much so he kind of just goes to whatever toy he can see and then plays with it for a while. I don't think he realizes he can explore the entire apartment yet, which I am not in a rush for..) he pulls to stand without a problem, his focus is awesome, he is making lots of eye contact which is something I couldn't have imagined when we first found out he was blind (he never looked at faces), he's very interested in the world around him, and I love seeing that. He is so amazing. I can't believe one day he will be four or five and I will have to answer so many of the questions I answer for my kinders each day, for him. Every day is an adventure, one that I am so lucky to be on.

Speaking of Mommy..

Last night my little monster said Mama for the first time!! I heard him on the baby monitor calling for me! He's been saying dada for months and months now, but mama was elusive, he would sometimes make a mmm sound but only when he was really upset. Last night he was just yelling it out in the crib Mamamama mamama mom mom mom mama. :D I couldn't be much happier.

Yesterday we went to the CNIB Christmas party, it was great! Tons of food, lots of other families with little ones like Skyler (limited vision or none at all) and Skyler got his first picture with Santa Claus, and he got to meet Santa's guide dog! (This Santa was blind! How cool). Our OT is going to email us the pictures she took of Skyler on Santa's knee, but in the meantime I have a picture I took of Skyler meeting Santa's guide doggy. And one of him playing with their Christmas tree (don't mind the cookie stains and peach sauce on his sleeves in the second picture, he enjoyed the Christmas sweets ;)

Being His Mommy

Some days I just really love being a mom. I mean I do everyday when I look at his gorgeous little face, but there are always those moments of "this is hard" and other whining. But when I really look at the big picture, I love being his mommy. I honestly think I was pretty well prepared when I decided to get pregnant, I had read all the books, I had taken care of babies on a full-time basis before, obviously I knew that it would be different when the baby was my own. But I had a good head on my shoulders, was really aware that it wouldn't be a walk in the park, with the waking up late at night, and everything else that comes with a baby. I knew it was a huge responsibility. I was prepared for all that. I think the thing that caught me off guard at first was his special needs. The day after he was born when the socially awkward endocrinologist came into my hospital room and said that my son would likely need to be on medication his entire life. I had barely even seen my brand new baby, and here was this stranger telling me something was wrong with him.

Even that though, I believe I have sort of grabbed the bull by the horns so to speak. I have taken everything that's been thrown at me as a mom, I've taken it all and found out what to do about it, I've been as proactive as I possibly can be. I know there are more challenges yet to come, but I feel content when I take a step back and see how well we have things under control. We may not be rich but my son will never go without a roof over his head, a full belly, and nice warm clothes to wear, oh and toys, so so many toys (although not really a necessity) and the medications he needs to live. He will never go without medical care, or proper attention. We recognize the signs of the things that would require a trip to the doctor's office or the ER.

He is 90% of the time an extremely happy baby. He is loved, snuggled, hugged, sung to, played with, read to, and cared for every single day. He knows he has people who love him and care for him and who will keep him safe from harm. He loves playing with us, he loves interacting with us. My baby has the most beautiful sunshine smile, and he keeps me happy when I'm feeling blue. When people ask me if I'd ever have another child knowing that there's a chance they may have special needs like my son I just laugh at them. I would have five more if they were guaranteed to be like my Skyler.Skyler I am so happy to be your mommy and so lucky that you are my baby.

Thank You

Thank you. I can't say it enough guys, you remind me of who I am and why I write this blog. Sometimes I just need to be reminded that I am doing okay. And now for some funny things!

I had Skyler on my break at work the other day and I was carrying him around for a bit. Here are some snippets of kinder conversation from my kids.

-"uh Brittany, what is that on you?" (said by our adorable autistic little guy)
-"well, it's a baby."
-"oh."

-"he has googly eyes!!"

-"you're rocking him too fast. he says he likes it slow like this" (as he takes the carseat handle and pushes me aside so he can rock Skyler. haha)

From the other day, when Skyler wasn't with me:

-(one of my little guys was going into the washroom) I'm going to lock the door, so no robber comes and takes me.

-"Today we're learning about Christmas celebrations in Mexico."
-"I had a dog and his name was Oliver , but he died."
-"Um okay.. I'm sorry for your loss.. We're talking about Christmas in Mexico though.."

-It's too loud! If you guys keep being so loud my whole body's just gonna turn into a puzzle. (said with complete seriousness, as I was sitting there completely confused.)

-"You can't be a mom! You're a teacher!"

And countless other things I have forgotten. Kids are hilarious.

And thank you again, all of you for your thoughtful comments. I appreciate them so much.

Foibles & Follies

So Skyler had his endocrine appointment yesterday. It was hectic, I had a lot to do at work and I had someone come in to cover me from 10:30 until 1pm because I was under the impression that the appointment was at 11:15, Chuck was supposed to get me at 10:30. He slept in until I called him at 10:40, and then came to get me at 11:15 saying that the appointment was actually at 11:45. We didn't get in to see the doctor until 12:45. Didn't get out of there until 1:40 and I didn't get back to work until 2:40. Timewise it was all quite ridiculous. However the appointment itself went quite well.

Our endocrinologist has apparently vanished into thin air and no one told us until we got into the exam room yesterday. And by vanished I mean he went into research in something to do with lipids. Which is actually fine by me because he always seemed way too nervous when he was speaking with us. And from talking to this new endocrinologist who is only covering his position for a while I think I can see why he seemed so nervous. New endocrinologist (female this time) said Skyler has been on way too much prednisone. We had been following old endocrinologists instructions and giving him stress pred for every little cough, sneeze, funny look, etc. He instructed us to give him stress if he showed any signs of anything. New endocrinologist says that the dose we were told to give him is a triple dose, and should only be given if he`s really ill like projectile vomiting with the scarlet fever. She said we should only give him a double dose (not triple like the other endocrinologist said) for stress if he has a fever of 39c. Anything less than that he should be on normal dose. He has been on a triple stress dose for months now! Because he`s been teething and had a cold and every other little thing the old endocrine told us to look for. I`m sort of mad at the old endocrinologist now.. I feel like maybe he didn`t know exactly what to do with us because it`s so rare.

New endocrinologist said we weren`t going to check his growth hormone yet. She said that she wants us to do this reduced prednisone thing for four months because, guess what, too much steroids will cause him to stop growing. She thinks he`s had too much prednisone and if we reduce it he should start growing again. If he doesn`t in the next four months then we`ll look at his HGH levels. She said that she was taught in Montreal and that depending on where they take their schooling they are taught different ways to prescribe the steroid for adrenal insufficiency because as she put it we don`t know exactly how much cortisol our bodies produce in a day or when under stress and each person is different. She said the idea is that normal everyday stress like teething or simple colds he should be able to handle with a normal dose because otherwise he would be in a stressful state all the time, and he shouldn`t have that much prednisone in his body. She also said when we stress dose him just give it to him twice and after that go back to the regular dose.

This means we`ve been overdosing our son with steroids. Sigh.. Add that to my list of things that make me a great mother. I know I was just following his doctors orders at the time. But somehow it doesn`t make me feel any better. I honestly am just trying to do the best I can. I love him so much. I wish I just instinctly knew how to take care of him without a bunch of stupid professionals who (some of them) clearly don`t know what they`re doing.

And now to cheer me up, and remind me that he is at least loved and happy even if he is a roid baby.