Haters gonna hate.

So I sit here with so much to say and not enough time in the world to voice it all. Thatcher is FINALLY in bed after a horrible, exhausting day and I’m spent, mentally and physically. Thinking about going upstairs to bed physically hurts. It was the kind of day where Thatcher literally WOULD NOT nap, and screamed for half an hour when I tried to get him to sleep. Pulled my hair. Screamed at me when he was hungry. People think my kid is a perfect angel, but I assure you, he is not. He will tell you when he’s not happy, and today that was all freakin’ day.

I can’t blame him. I’ve been pretty miserable to be around lately, too. I am just frustrated with humanity, basically. Allow me to explain; for the last few weeks I’ve really felt harassed on Facebook. I generally speak my mind, and social media is no exception. But ever since the car seat incidents, I really feel targeted. Sure, things I say aren’t always flowery and happy. If something isn’t nice but I’ve been thinking it a lot lately, it gets a mention. Is that appropriate for Facebook? Probably not. But since my attempt to stay off my phone, I’ve quit Twitter, where I would normally vent my frustrations. On Twitter, people appreciate your honesty. You don’t tweet to interact with people you know IRL, you tweet to make your little internet family that you have a lot of things in common with.

I keep forgetting that Facebook is different. Facebook is a group of people you know IRL, but you only like 60% of them. You add them or they add you for the simple fact that you know each other. That’s it. Some are friends, some are coworkers, some are family. Some, you might have even met at the bar when you were 21 or on a vacation for spring break. But all of them know you on some level.

The problem with Facebook is that you can never delete people. Delete your family members? Get the evil eye and get talked about at family functions. Delete coworkers? Everybody talks about you in the break room. You can’t even delete a friend of a friend of a friend because it will get back to them. So what are you supposed to do, then?

I guess you could avoid all posts that people might find offensive. So, what could those be? Firstly, people hated my chalk board pregnancy photos. So I guess none of those. Then I hear people complain about baby pics. So no posting Thatcher pictures, then. Not to mention that everyone tells me I shouldn’t compare Thatch to other kids, especially typical kids. So I guess posting updates on what he’s doing developmentally is out. Oh, and how about posting an OPINION on something?! How would that go over? HA!

So the other day, I posted a pure opinion on Facebook. For no reason other than the fact that something was bothering me. Like any normal human being, I have likes and dislikes (go figure!). I decided to state my immense dislike for a certain name. And I stated it in a Facebook status. Someone asked me why I hated that name and anyone who names their child this, and I stated that it’s because I see it as a stripper name. It’s got a trashy ring to it, one of those names people think are cute and princessy but in reality they belong in Hustler magazine, like Destiny, or Charity, or Harmony. So I post about how much I hate this name, and I get all kinds of nasty comments. Comments about how I need to be nicer, or more positive, or that I’m “stirring the pot”… even that I need a hobby. I need a hobby?! I haven’t been out of my house for more than half an hour in a week, and when I do go out I’m carting around 20lb of baby, 10lb of diaper bag, 10lb of carseat… I’m sure I have time and energy for a hobby!

So the gist of what people were saying is… don’t voice my opinions. Apparently everyone who commented on my status is allowed to have an opinion, but I’m not. Yep. That seems totally fair. Now to be honest, yes, I do stir the pot every so often. 99% of the time, I don’t even realize I’m doing it. And so I get why people don’t like me. But to gang up on me on my own Facebook status and tell me what a horrible person I am?

It really took me back to high school. I got bullied in high school, taunted and tormented, called names… I got singled out of my group and hated. I actually had to file a police report because a bunch of girls told me that I should kill myself because the world would be a better place without me; one of the girls told the principal what happened and he called police; she later denied it and said that I snitched. When I tried to switch schools, the public school wouldn’t take me. They said they didn’t want my problems. So I was stuck. I was insanely depressed and at times I contemplated suicide. It was a horrible time in my life, and I think people who tell you high school was the best time of their life are crazy. Honestly, nothing good happened to me in high school, and I regularly speak to approximately one person that I went to school with. In high school, was there a reason people didn’t like me? Probably. My likes, dislikes, and values probably didn’t align with them. And yes, I probably ran my mouth a little bit too much. Did I deserve to be alienated, made fun of, and made to feel like a pile of trash? Probably not.

I feel like society is so unaccepting of differing opinions. And yes, I’m guilty too. I’ve said things that were offensive because they didn’t align with my thoughts and ideas. And I know it was wrong. And it’s something I’m working on. It’s part of my whole positivity/ignoring the negative thing. There are people on Facebook that I don’t like, but I can’t delete because then it will become a whole load of drama that I’m not interested in. So I unfollow them, and their posts never show up on my feed. But what am I supposed to do when those people still get my posts, and they start commenting on them and picking them apart? Refuse to defend myself, lest I be labelled a pot-stirrer?! Delete them and have them talk behind my back about how I backed down and didn’t defend my point? There is no way of winning.

So here’s what I propose: We all need to take a step back and realize everyone is different. Everyone has different likes and dislikes, different hobbies, religions, etc. And we accept that. I might hate that you named your kid Destiny. But I’m not going to say it to your face. And I’m not going to say it behind your back. I might tell my husband I hate it, and that’s as far as it goes (husbands don’t count as talking behind your back because they are like a phantom limb or something). I’m allowed to dislike things you say, and you’re allowed to dislike things I say, and it only makes us bad people when we argue about it or talk behind each other’s backs. I am a good person. I’m a nurse, I care about my patients. I buy lunch for homeless people sometimes. I tip 20% most of the time. I hold the door open, not just for the elderly, but for everyone. And I love my family, my friends, and my little bird fiercely. I am not a bad person. Until you tempt me. Until you comment on something and you push my buttons. Then, I’m a bitch. But let me tell you something, button pusher. That makes you a bitch too. So if I post something that you dislike, be it an opinion, a thought, an action, and you don’t like it, scroll on by. Or better yet, go to my page and hit “delete” or “unfollow.” Whatever you need to do. I know I have a lot of unpopular opinions, and I’m not well-liked. Life isn’t a popularity contest. At least I’m not sweet and nice to peoples’ faces and rude behind their back just so everyone will like me. If I like you, you know. If I don’t, you know. And if you don’t like me, I’d rather you just leave me alone. Is it really too much to ask? I want my son to be raised to know that he is allowed to have opinions. He is allowed to have likes and dislikes. Sure, he should voice them in an appropriate manner, but he is an individual with individual thoughts, and he can let them be known. I don’t want to raise a marshmallow. I want to raise an individual. And I’m sure, if you have kids, you do too. So why can’t we let each other be individuals with individual thoughts, and lead by example?

Days like these, when my son has cried probably 2-3 hours of the day, ripped out my hair, vomited on me multiple times, and woken up whilst I was blogging because he was having night terrors, I have a lot on my plate. I am having a hard enough time being a mama. I have enough to deal with without being antagonized. I’m allowed to be grouchy; we all are. Give me my moment to be a grouch; to not be happy 24/7. I’m a human, just like you. You ignore me, I’ll ignore you, and we will all be better people. Even on minimal sleep.

Thankfulness.

So today is World Down Syndrome Day, and I thought I’d do a little post on what Down Syndrome means to me. I know that the meaning has changed for me even in the past few months, and I think as Thatcher grows, the meaning will continue to evolve for me, but this is the meaning in the here and now. 

First, I’ll start off with a brief introduction of what Down Syndrome is, in case you don’t know. I’m going to put it totally in layman’s terms here. Basically, when a baby is conceived, the egg and sperm meet, and each has twenty-three chromosomes. They come together to make a zygote that has 46 chromosomes. Occasionally, the chromosomes don’t divide properly and you end up with an egg or a sperm that has an extra copy of the 21st chromosome. When conception happens with one of these, the resulting zygote now has three copies of the 21st chromosome, for a total of 47 chromosomes instead of the typical 46. This little zygote has what you call trisomy 21 (three copies of 21), or Down Syndrome. There are other ways that Down Syndrome can happen, including a chunk of extra 21st chromosome stuck to mom’s or dad’s genetic makeup, but in Thatcher’s case, he has trisomy 21. A total fluke chromosome that changed our lives.

So, what does this mean? It means that the resulting baby with trisomy 21 has a higher chance of health issues like heart defects, sleep apnea, low muscle tone, umbilical hernia, leukaemia, thyroid issues, and intellectual disability. It means that because of their low muscle tone, they will probably take longer to reach milestones like sitting, crawling, and walking. It means that they might grow slower, gain weight at a less rapid pace, and be smaller as adults. It means that they generally will have a lower IQ than typical people. So basically, it means they have a lot of strikes against them.

I have met a lot of parents of children with Down Syndrome that will tell you how happy they are that their child was born with DS. They say they can’t imagine having a child without it. They are glad their child has an extra chromosome. I can’t say that I will go that far. I love Thatcher exactly how he is, but if I could take away that extra chromosome and still have exactly the same funny, handsome, smart boy that I know and love, I absolutely would. I would love to take away the heart defect he was born with, the sleep apnea that I am pretty sure he has, or the probability that he will need extra help in school. I’d love to not have to worry about seeing our occupational therapist every few weeks (although we love her!), or having bloodwork done to check Thatcher’s white cells and thyroid function. I’d love to never have him do a sleep study, to not have to have his eyes checked so often, to never go back to the cardiologist. So, if I could keep him just as he is, but not worry about all those things, then I absolutely would.

But, in a way, I am thankful for Thatcher’s extra chromosome. It might mean more therapies and doctor’s appointments and challenges, but it brings with it some wonderful things.

First and foremost, Thatcher is Thatcher. And Thatcher has 47 chromosomes, three of them being the 21st. He is exactly who he is, and who he is supposed to be. Again, I don’t buy into all that God stuff, but I think we are here for a reason and I think that Thatcher is Thatcher for a reason. Yes, I would love to take away all the things that come with his extra chromosomes, all the worries and fears and scary things that come with it. But I would never change him. He is who he is. He is not just Down Syndrome, but he IS a child who has Down Syndrome. And I wouldn’t change him for the world. He is the brightest, funniest boy who makes my world turn. He is my reason for getting up in the morning (or at the butt crack of dawn!), he is in every smile. He is my whole world, exactly how he is. He is what I am most thankful for.

Next, I am glad for the Down Syndrome community. I have met so many wonderful people, through our local Down Syndrome association and through online support groups. We also had the wonderful experience of meeting Tara and Pip from Happy Soul Project. I think she said it best in one of her older blog posts, being a parent of a child with Down Syndrome is sort of like being in a special sorority. It’s a family of people who support each other and accept each other. It’s really quite phenomenal how open and welcoming I have found people to be, how they share in your ups and downs; despite never having met you, they help you celebrate your child’s accomplishments and support you on your darkest days. I couldn’t be more thankful for these wonderful parents (and sometimes grandparents/siblings/etc) who have been such a phenomenal support.

I’m also thankful for the strength that Thatcher has brought out in me. In college, I used to make my mum call the phone company or the car dealership or whatever it was, to make a complaint for me. Thatcher has brought out my inner mama bear. By advocating for him, I am learning to advocate for myself. He has also taught me to be strong in other ways. I used to be a quitter. Seriously. I didn’t follow through on a lot. But this whole parenting thing is teaching me to stick with things. It’s teaching me that sometimes, the best things take work (like sleep training! Good lord!). I think this is definitely applicable in other aspects of my life, and I’m hoping it’s going to help me with Weight Watchers : p

Another thing to be thankful for is how Thatcher has changed my perspective on people with disabilities. One of the mottos of the Canadian Down Syndrome Society is “See The Ability.” I think that before Thatcher was born, I didn’t realize the amazing things that people with disabilities, and especially people with Down Syndrome, could do. When he was born, I only saw the negatives, the tests and doctors and special help he would need. But people with Down Syndrome do amazing things! They go to university, they have jobs, they get married. They do all the things we would hope for our children. I actually read today about a young man with Down Syndrome who is a student at the University of Alberta and a member of Lambda Chi Alpha, my husband’s fraternity. I thought, “Uh oh! We are going to have a frat boy on our hands in 18 years!” We are going to have a frat boy. A university graduate. A young man who has hopes and dreams, and reaches them. And if you still don’t see it, keep following us. I have no doubt that Thatcher is going to blow any preconceived notions of what a “disability” is out of the water. 

So, today, on World Down Syndrome Day, I am thankful. I am thankful for all the lessons that Thatcher has taught me, and all the lessons I have yet to learn. I couldn’t ask for a more perfect reason to celebrate today ❤ 

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The R-Word.

So with World Down Syndrome day coming up this week (it’s on 3/21… as in 3 copies of the 21st Chromosome… get it?! clever!) I’ve been doing some thinking on what to blog, and I keep thinking of things at around midnight and by the next morning I’ve forgotten. I obviously want to write something WDSD related, but I’m drawing a total blank. However, what has been on my mind lately is just one word: The R-Word.

It’s one of those words we are all guilty of using sometimes. It slips out. Something bothers us, and we say, “That’s retarded.” But what does it really mean? Basically, it means “stupid.” It means developmentally delayed. It means slow. But it’s not just an innocent word. It’s used as a put-down. It’s used to make fun of people with developmental delays. And one day, my biggest fear is, it’s going to be used to make fun of Thatcher. 

Let’s face it, chances are that Thatcher is going to have a lower-than-average IQ. And that’s fine. I can already tell he’s a sharp cookie, and with assistance, he will do great things. He will learn and grow and be someone phenomenal. But he might need some extra help to get there. And while times are changing, I fully remember how kids in the “special” class at my school got treated. Some of them were well known and liked, but mainly because people found them funny and laughed half with them, half against them. It’s possible that at times, I laughed at them too. And why? Because they were different? Because they needed some extra help? Haven’t we all needed a hand once in a while? None of us are experts at everything. None of us are “normal,” we are all different from each other. Why are some differences good and some bad?

But I digress. I’m getting off my topic. The fact is, you can argue that the R-word is just a word, but it’s a word that hurts. It’s a word that I’m terrified of. That I have stricken from my vocabulary and sworn not to use. It’s a word that, in fact, I pledged to eradicate from my life. I tried to “Spread the Word to End the Word” on Facebook. And nothing happened. Not a thing. I posted photos and links about ending the use of the R-word, and not a damn person commented. Nobody “liked” it, nobody asked me about it. Nothing. I think it’s that they don’t get the importance of it. They think it’s just a word.

A lot of people have supported my blog, have given me a “Amen, sister!” or have helped me spread the word about #OperationEllenMeetPip for my new friend Tara at Happy Soul Project, or shared the video of her feature on Global News/Thatcher’s TV debut. Heck, I’ve gotten nearly 100 “likes” on my new profile pic on Facebook about how “Love doesn’t count chromosomes.” But my stance on the R-word? Completely ignored. 

I think people don’t understand how it feels. How terrified I am of that one little word. How much it hurts. Thatcher is going to be so many things. He is going to be smart, strong, handsome, and good. He is going to change the world. He is going to be different, yes. But different is wonderful. Different is not bad, or dirty, or negative, or gross. Different is a great way to see the world. And different is most certainly NOT retarded. So please, take the pledge and strike from your vocabulary the word that is bad, dirty, negative, AND gross. So that it can become obsolete and never be used for the amazing, beautiful boy who lights up my world.

Lent.

So I realize that Lent has already started and that I am much closer to Atheism than Catholicism, but I have finally figured out what I’m giving up for Lent. Even if I don’t believe in religion, I think Lent is a great time to really clean out our priorities and do some spring cleaning of our lives. This year, I’m cleaning out the negativity from my life.

That sounds pretty broad, but I’ll explain. Lately, I have been perusing Facebook a lot more than is necessary (really, is any of it necessary?!) and I have started noticing some things. There are always going to be those people that annoy you just by breathing. Honestly, to a lot of people, that person is probably me. I’m loud, I’m opinionated, and I have trouble keeping my thoughts to myself. Even when I mean well, my thoughts usually come out wrong and end up offending somebody. I’m just not good at being that person everybody likes. Case in point: I wrote a post the other day about how I’ve noticed a lot of sloppy seat belt use by parents on Facebook. Multiple parents. No one in particular, but probably 10-15 people. I’ll be honest. When Thatch was first born, I thought I had his harness done up right, and at a work function, somebody pointed out that his chest piece was not high enough. My first instinct was to tell this person, I’ll call her “Mary” just to give her a name, to stick her opinions where the sun doesn’t shine. But I readjusted it anyway. I went home, did a little research, and realized that Mary was right. So, yeah, I was mad at Mary for a split second, but then I realized she had Thatcher’s best interest in mind and was looking out for me and my family. Who could argue with that?

So anyway, since then, I have done a lot of reading on car seat safety, especially when I was shopping around for Thatcher’s next carseat (he outgrows his in about three pounds already! Eek!). I have seen countless photos of kids in carseats on Facebook lately, and I made some posts to this effect. A lot of people took it really personally, which is, I guess, to be expected. What I was really going for, though, is awareness. So if people are mad, if they spend even one extra second making sure that their kids’ seat is secure, then I’ve reached them the way that I wanted to. It just sucks that unfortunately I may have lost some friends along the way. I know for sure that Mary, who had tips for me about Thatcher’s car seat, was posting about me on Facebook with another coworker basically making fun of me and saying what a bitch I am. And, yeah, that sucks. It gets me down, really. It makes me sad that, unfortunately, I’m not great at communicating things in a “helpful” way, they always come across wrong and insulting. It’s something I need to work on.

However, this whole incident made me realize something else that I need to work on. Focusing on the positive. All this debate and arguing about car seats is really silly. I mean honestly, I’m just concerned about kids’ safety. But it turns into this huge debate. And I buy right into it. Somebody posts something because they are offended, and I argue my point right back. And it leads to this huge ordeal. And why? What is accomplished by this? The answer, of course, is absolutely nothing. Now that person probably hates me, and is never going to read any of the articles I chose especially for their information and spent Thatcher’s nap times picking out. They don’t want to hear a word I say. And now I have a new enemy. And for what?

So, here’s my Lenten vow. To end the negativity. For me, that means not following people on Facebook who get me riled up. What’s the point? If everything they do frustrates me, how about I just STOP following them? What a concept. If they want to post arguments, IGNORE them. Again, a simple concept, but something that I’ve never done.

The other thing is, I am WAY too attached to my technology. Like seriously. And I keep reading all these things about not using technology before age two, and I’m 100% invested in that… Articles like this one and this video make amazing points and have convinced me that I want Thatcher nowhere near my phone or a tablet… We already ensure that TV is never on in the same room as him.. But I am constantly on my phone, and I’m noticing that Thatcher is grabbing for it constantly. I know that there are educational apps and whatnot that plenty of people use, but for me, it’s just not an option. I am completely committed to no technology for him.. But what kind of example am I making by being on my phone 24/7?

So with these things in mind, I have deleted my Facebook and Twitter apps from my phone. Yes, I will still use my tracking apps and my music, etc. But I want to be 100% committed to spending quality time with Thatch, and for me, that doesn’t include technology. I will keep Facebooking and blogging when he is napping or at nighttime when he is in bed, but even then I really want to cut down. All that social media has brought me lately is negativity. If I want to talk to people, I’d rather throw them a text while Thatch is napping and get real, personalized responses rather than a generic status that is meant for everyone on their list.

What drove this change? Funny enough, part of it is the whole car seat debacle, but part of it is something I follow online. Obviously I have mentioned Happy Soul Project before, and how we got to meet Tara, Pip and Noal last week for a segment on Global News (which is airing as we speak, but Dev and Thatch are at RSV clinic so I have to wait to watch it! Eek!). Her philosophy is basically to have a “happy soul,” hence the name… to be loving and accepting to everyone, to look for the opportunities life gives us… And in meeting her, I realized that I have become exactly NOT that kind of person. I complain about a lot of things, I spend a lot of my time miserable… and I don’t need to. That’s not who I want to be at all. When I look back at my life, I want to see all the things I did, not the things I didn’t do. I want to have so many good times I can’t even keep track of them all… and having a negative attitude will never get me there. So I want to say yes all the time. Like that stupid Jim Carrey movie but without the insanity. Obviously time with Thatcher will always come first, and his appointments will always take priority.. but for example today a friend and I took an hour out of our day and took a 5k walk in the park with our kidlets… we are doing again tomorrow. It would be easy to think of an excuse by then, but instead I am saying YES! Yes to activity, yes to friends, yes to life. Obviously we are not well off, so I can’t do a lot of costly things… but they say the best things in life are free so let’s find out! I’m thinking of it as spring cleaning for the mind, body, and soul.

So friends, I hope to be seeing less of you online, and more of you in person. I hope to be getting out of the house and living a little… or a lot! I hope to be sticking to my weight watchers plans and becoming a better, healthier person by trying new recipes, getting out and walking, and spending more time moving and less time sitting. I hope to spend so much time snuggling my little bird, instead of looking at my phone. See you on the outside ❤️

Happy Soul.

So this week we had a bit of excitement. There is a blog that we follow, and I believe I have mentioned it before, called Happy Soul Project. It’s a blog by a mum not unlike myself. She actually has two beautiful children, and one of them, Pip, happens to have Down Syndrome. I will warn you that if you click on the link to her website, you may fall in love with the entire family. You will definitely peruse all her photos of her “hooligans” and admire how darn beautiful they are!

So anyway. We have been reading HSP for a while. Since Thatcher was about two months old. Truth be told, before then I wasn’t ready. My aunt had sent me the link, and told me to check it out, but I just couldn’t. I didn’t want to admit that I might be like this other mum. I didn’t want to admit that Thatcher had Down Syndrome and that this was something we would be dealing with for the rest of our life. I knew he did, and I was working on it, but I was taking it day by day, and I really wasn’t ready to get a glimpse into the life that we would have in the future. It was just too much.

So around October I started peeking in on the blog. Pip’s mama, Tara, takes AMAZING photos of her kidlets and is exceedingly positive and down to earth. So I started reading up about when Pip was born, and following them on Facebook. I made Devin (hubby) follow them too, and we loved seeing the new pictures that Tara would post pretty much daily. We would talk about how sweet her kids were and some of the topics she would post.

And then a few months ago, one of them really hit home. Tara had gone to pick up her son, Noal, from daycare, and brought Pip along. A little girl came up to Tara and Pip, who was wearing her eye patch, and said, “That baby is broken.” My heart broke reading that. It absolutely grabbed me and wouldn’t let go. I thought about our future, not for the first time, but for the first REAL time, the first time that I would seriously realize what we were going to go through. And I knew that something similar will, one day, happen to Thatcher. It might not be a little kid, it might not be the same words, but it will happen. It could be an old lady looking at him in a grocery store with a funny look on her face, or a kid in his class pushing him and calling him names, or an extended family member making assumptions about what he can or can’t do. But somewhere, someday, he is going to be judged for how he appears, for his extra chromosome, and there is nothing I can do about it. It broke my heart. I started reading more of Tara’s blogs, because I felt like she has been through things that I have in store for me in the future, and could offer guidance into what I was going to encounter.

And then, in January, this post appeared. Basically, Tara was with Pip in a grocery store, and a woman approached her and was admiring Pip’s obvious cuteness. Then she leaned in and asked, “but what’s wrong with her?” Now, Tara has a lot more poise than I ever could, because all she said was “absolutely nothing,” and she walked away. I can’t say how I’d react in that circumstance, but I’d either cry or scream or, more than likely, both. But again, it made me realize that Thatch is going to be judged on his appearance his whole life… it really made me want to start taking steps to educate people more about Down Syndrome, so that even if people see Thatcher and his DS, they will know more about it and won’t be so afraid of it. I want people to know that Thatcher is going to grow up to be a strong, smart, independant man who can do whatever he wants to. I don’t want people to think something is “wrong” with him, but instead see who he is, not what he is or what diagnosis he may have.

Anyway, to make a long story short(er), the story about the grocery store went absolutely viral. Tara took photos of Pip beside a sign that says “What makes you different is what makes you beautiful” and of course, it was a huge hit. Newspapers and TV stations started picking up the story, and it even made it to the Huffington Post. So I wasn’t surprised when she posted that Global News (a station in Toronto) was doing a story on their family and Happy Soul Project. They were looking for another family with a child who had Down Syndrome to be part of the story.

I got a few emails from family and friends telling me that we should apply, but Devin was working that day, and with my maternity leave pay not being phenomenal, we really couldn’t afford to drive down to Toronto for the day, so I told them I couldn’t. However, it kept niggling at me that I wanted to send a message to Tara wishing her luck and letting her know how much Happy Soul Project has meant to our family over the past few months. So I threw an email her way and forgot about it for a few days.

Last Wednesday, a friend and I took our kids swimming, and when I got home and checked my phone I had a few emails waiting. I checked my inbox, and there was an email from Tara letting me know she needed to talk to me ASAP. Turns out she had sent all her emails to Global, and they had chosen us as the family they wanted to include in her story! Of course I immediately told Devin that we had to move our schedules around, and gave her a huge “Yes!”

So Tuesday we headed down to Toronto to meet Tara, Noal, and Pip. I’m pretty sure my family was bursting with excitement, everybody wanted me to give Pip a hug for them. Honestly she is a huge celebrity in my family! I was so flipping nervous about everything, but Tara was honestly remarkably down to earth. It was super weird being asked by a reporter what I thought about Tara, while Tara is in the room and I just met her ten minutes ago. Also, if you haven’t noticed by now, I’m not very concise and I have a hard time getting my point across. Also, I cry easily, and the reporter knew exactly how to touch on that so I cried for 95% of the time I talked to her. Whoops. So if there is ten seconds of me in the entire story, I will be surprised. It’s really shocking that I went to school for radio and television presentation back in the day, because I’m honestly TERRIBLE on camera.

But anyway. It was really flipping cool to get to meet someone that we are so inspired by. And to have Thatcher and Pippy get to meet each other and have hugs! So cool! I am so psyched to see the story on the news and get to tell Thatcher when he is older that he got to be a part of something so amazing. I absolutely hope that Tara and Pip’s story continues to spread like wildfire. She is doing so much to help raise awareness about Down Syndrome and all the wonderful things about our kids, rather than having people see them as disabled or sick or just a kid with Down Syndrome. Our kids are phenomenal little people who are going to change the world and do amazing things. I can’t wait to see all the things that Thatcher accomplishes in his lifetime.

Oh, and if y’all wanna see my little bird’s TV debut, it’s on Global News on Monday evening. I will be taping it to start the collection of memorabilia of all the fantastic things he does in his life ❤

 

Little bird exhausted after his interview

Little bird exhausted after his interview

Half Birthday

So Thatcher turned six months old today. It’s hard to believe that half a year has gone by already. More than half of my maternity leave is over and I can’t imagine not spending my days hanging out with my favourite little bird. I’m trying not to think about that fact yet.

Instead, I’m thinking over the past six months and how our lives have changed. Before Thatcher was born, I thought I knew how our life would look. We’d have 2.5 children, get out of debt, buy a house, start saving for their university educations. They would move out at 18, get married and we’d become grandparents while bragging to our friends and neighbours that our daughter finished her PhD and our son just accepted a new teaching position in some country in Europe.

Now? It’s mostly the same image, with a dose of reality. Life is probably not going to be ordinary. It might not live up to the high expectations that I set when I was 15 and thought that I was going to be the most successful person ever and own a tiger and live in a custom-built home (Really. Those were the things I thought I’d have). Instead, life is going to be extraordinary. It’s going to exceed my expectations in the best of ways, and be full of so much love it still brings me to tears occasionally (blame the hormones.. can’t I still blame them?!). It might be full of therapies, or blood work, and specialist’s appointments, but it will be amazing.

In his short life, Thatcher has taught me to be stronger than I ever imagined. He has taught me that I can be a strong advocate for those who need it (like when I pushed and pushed to not give him bottles or pacifiers or formula, and adamantly swore that I would make breastfeeding work… and eleven pounds later… it obviously did!). He has taught me to love fiercely and unconditionally. When he was born, the first thing I saw was his Down Syndrome. Now all I see is Thatcher. He is smart, he is strong, he is handsome, and he is good. It has become our mantra and I tell him every day. He is not a child with a disability. He is a child with SO MANY abilities. He will do amazing things. He will teach the world that different can be amazing, and that everyone is capable of doing things if they believe they can.

When I was decorating Thatcher’s nursery, I made four pieces of wall art. They are all E.E. Cummings quotes, with little nautical images behind them. It’s really funny, the way things work out. I chose four quotes that I liked, but I didn’t think 100% about how they would impact us. My favourite of the quotes is as follows; “to be nobody but yourself in a world that is doing it’s best to make you somebody else, is to fight the hardest battle you are ever going to fight.” Obviously I chose it because I feel strongly in being yourself and being what you want to be when you grow up, but I think now that it is so much more than that. Thatcher is who he is. He isn’t who I thought he would be, but he is exactly who he is supposed to be, and I will always encourage him to be himself and only himself. He might be different, but different is phenomenal. Nobody can change him, and nobody should. I think it’s something we should all live by.

Another thing that I have been thinking about a lot lately is Down Syndrome awareness. When Thatch was first born, I wasn’t into it. Don’t get me wrong, I am all for inclusion and rights for people with disabilities. It’s just that I didn’t want people to see Thatcher as “the kid with Down Syndrome” and I didn’t want us to be seen as the family with the child with Down Syndrome. I wanted us to be a “normal” family. What I didn’t consider was that that will never be us. And that’s okay. Case in point: This week I went to the community pool with Thatcher, a friend, and her daughter. The pool is attached to an elementary school who happened to be ending for the day as we were leaving the pool. As we were walking out the door, there was a group of kids with their caregiver leaving the building. Out of five kids, my eye was drawn to one girl. She was probably seven or eight, with red hair and adorable purple glasses. And she had Down Syndrome. Now, maybe I notice people with Down Syndrome more often now because of Thatcher. Or maybe I would have noticed anyway, because she didn’t look like a typical child. Either way, I noticed her. And I thought, what an adorable little girl. I didn’t think anything negative. I just noticed, that’s all. So… maybe people will notice Thatcher. They might think he is different. But damn if I won’t do everything I can to make sure that when they notice him, they also notice how smart he is, how strong he is, how handsome he is, how good he is. They will notice all those things that are my mantra. They will see that he is different, maybe, but they will see all the ways that he is just like everyone else, and even all the ways that he is phenomenal. If everyone was aware of what Down Syndrome is, and what it isn’t, that’s what they would see. They wouldn’t feel sad for us, or say “I’m sorry” when I tell them about his extra chromosome. They would ask us questions to further their understanding, but they wouldn’t think for a second that there was anything wrong with him, that there was anything that he wasn’t capable of.

So, what does this epiphany mean? Will I focus on Thatcher’s extra chromosome? Absolutely not. But will I shy away from questions, or close myself off from people who want to learn about what it all means? Nope. I will do my best to educate my friends and family, and to advocate for Thatcher and push him to do his best and explore the things he loves to do as he grows and discovers new likes and dislikes and hobbies. He will be the best that he can be, and do the things he loves, and I will stand by him through it all.

This Tuesday, we get to meet one of our biggest inspirations, T from Happy Soul Project and her amazing family, including Pip, her beautiful one-year-old daughter who happens to have Down Syndrome.  We are meeting them for a story on Global News about their family and T’s amazing job of advocating for Pip and helping to educate the masses and get everyone to see how different is beautiful. I am so psyched to meet them as they have been such an inspiration to our family… they are paving the way for people to see Down Syndrome in a different light. By all means, if you are somehow reading my blog and haven’t checked out Happy Soul Project yet… do it now! You will not be sorry, and will start following on Facebook just to see the daily, adorable Pip photos.. I know they brighten our day!

All in all, if you are still with me here, this has been totally random ramblings of my brain, just wanted to recount my thoughts recently… a lot of them have just been due to reminiscing over the past six months. If you are reading this and you are at the beginning of your journey with your child, whether they have Down Syndrome, are typical and have no health issues, are a preemie, whatever the case is… The next six months are going to be hard. Some of us have more challenges than others, but I think it’s hard for everyone. There are sleepless nights, hormones, etc on top of any medical issues going on, and some days you’re going to think it’s more than you can handle. It’s not. I’m not religious so I don’t buy into any of that “God doesn’t give you more than you can handle” business per say, but what I do believe is that you are stronger than you think. When I was pregnant, I worried that I wouldn’t know how to raise a child. When Thatch was born, I worried that I wouldn’t know how to raise a child with Down Syndrome. But you get through it. You learn with your child, you and your first born learn together. You teach them, and they teach you more than you could ever imagine. My life is nowhere near where I pictured it when I was fifteen. But it is so much better, so much richer, filled with so much more love than I could even imagine, and I wouldn’t change it for anything.

So happy half-birthday, my little bird. I can’t wait to see all the ways that you will change the world.

Milestones

So I haven’t been updating this blog nearly as much as I should, I have been neglecting the internet in a bad way, but I’m thinking that’s a good thing because I’m trying to have as much mama/Thatcher time as I can. I think I spend way too much time tethered to my phone, and now that I’ve (mostly) quit junk food and cut down about 99% of my TV time, I need a break from the interwebs too. It kind of feels like I’m neglecting a friend, but better that than actually be neglecting my child.

I guess what I felt like writing about today is what I am working my way through right now. Thatcher will be six months old next week. It’s huge. I’m in total disbelief that it went by so quickly! It’s terrifying! 

But what is really getting me is that Thatcher’s development is really stalling. It seems like since he was born, I have been comparing him to “typical” milestone charts. I know it’s wrong, and that I shouldn’t be comparing him to anyone at all, but I can’t help it. I’m pretty sure all parents do it. How can you not? When I go on Facebook, all I see are parents showboating how “special” their babies are. I legitimately saw a claim last week that someone’s one-month-old could roll from her front to her back, a feat that Thatcher has yet to figure out. And I’m guilty of it too. It’s not that I’m trying to brag, it’s that I’m so thrilled that he is excelling that I want to shout it from the rooftops. I’m so proud. 

But lately, I have nothing much to shout, and everyone else is so much louder, and it’s drowning out the celebrations I should be having. I knew from the beginning that Thatcher would be a bit behind in his milestones, but I didn’t really accept it. I told myself it was true, but I watched him surpass expectations and excel, and I told myself it would be like this forever. And I’m realizing that it won’t. Eventually, other kids his age will be crawling, and he might be starting to truly sit unassisted. They might walk, while he starts to crawl. Maybe they will be talking in short sentences while we are still grasping some simple words. And I think it’s going to be hard. I think this is just the tip of the iceberg. 

And I am insanely proud of everything he does, don’t get me wrong. We are working at unassisted sitting, and he is finally rolling from back to front bilaterally. After two or three months of rolling only one way, I was over the moon when he finally “got” it last week after hours of coaxing and practice. But it’s still hard. It’s still a loss, and maybe it always will be. And it is just leaving me so torn. I feel like a mama’s job is to be fierce and proud and fighting for her babies. She is supposed to think everything they do is perfect (okay, maybe not drawing on the walls or having a tantrum at Loblaw’s, but you get the drill). And I feel so guilty about how I’m feeling. I don’t know why I’m telling y’all this except to get it out there and hope that someone, somewhere has felt the same and it’s not just me. I can’t really even put it into words, exactly what I’m feeling, because it comes out wrong. It’s not disappointment with Thatcher, but rather with that one damn extra chromosome that is affecting our lives. My hope, I guess, at putting this all into words is that some kindred spirit somewhere will find this and read it and understand. And I won’t be alone in my feelings. I love Thatcher so much and I want him to have everything in the world. I want him to be exactly who he wants to be, and it’s heartbreaking to think that some things could be out of the realm of possibilities in the future. 

I saw a video posted on Facebook yesterday, about a mama whose daughter was born with DS and she ended up opening a cupcake shop bearing her daughter’s name (http://www.cristinastortinashop.com), and in the video interview she said that the doctors told her they were “sorry” that her daughter would never be a doctor or a lawyer. Her reply was that she didn’t expect any of her kids to be doctors or lawyers, what was so different about her youngest? I get what she was saying and I can respect that, but what if one day Thatcher tells me he wants to be a doctor or a lawyer? What then? I want him to be whatever he wants to be. I hate the idea of telling my beautiful, perfect son that he can’t be who he wants to be. 

I guess that’s what’s getting me down. The reality that is hitting me, all over again, is that his life isn’t going to be sunshine and rainbows. There are going to be challenges, and we are going to have to work hard. The great thing, the lucky thing, really, is that he will do all those things other babies do. He will crawl, he will walk, he will run. He will do it on his own time, and I will be fiercely proud of him every day of his life. Some children never get to do these things, so for this I am grateful. 

But it still doesn’t make it easy. There are going to be days like today, where I mourn the loss of the ideals I had, so that I can bury them and further appreciate our life as it is going to be. And it is going to be phenomenal, because I have the two best boys in the world to share it with.