Awareness.

So I’ve been sitting here trying to figure out how to kick off Down Syndrome Awareness month. I intended to participate in 31for21, which is where you blog every day of October to promote Down Syndrome awareness, but I’m on night shifts and I totally let sleep take prescience last night instead of devoting my time to blogging. So here we are, kicking it off on October 2nd. Oops.

I sat here thinking and browsing other people’s blogs, trying to think of how to start. And then it hit me.

Yes, we need to promote awareness. But WHY? I mean, everyone I know has been really open and welcoming. Since I’ve gone back to work, everyone has been amazing and interested in how Thatcher is doing, and has told me how adorable he is (I agree!). It seems like, in my life, awareness and acceptance are already running rampant.

Except, it’s not like that everywhere. I still read articles on Huffpost or Upworthy about Down Syndrome, and underneath the heartwarming post, there are comments about how kids with Down Syndrome… kids like mine… should have been aborted. About how they are a burden on society. About how they shouldn’t be allowed to live normal lives, be included in “typical” classrooms, or have jobs. And I look at the abortion rate of babies with a prenatal diagnosis (something I plan to cover in a separate blog): 80%. EIGHTY PERCENT. Eight out of ten families who find out that their baby has Down Syndrome, abort them. Just because of one extra chromosome. So, clearly, awareness must be raised. Acceptance isn’t here yet. We are far from it.

But with this blog, I wanted to get into how far we have come, and how proud we should be of our forefathers, who raised amazing kids with DS despite adversity, and helped us to be where we are now. Without them, Thatcher wouldn’t have received the care he has. He wouldn’t have been set up with physiotherapy at two months old. We wouldn’t have our local Down Syndrome Association. Without them, nothing would have changed.

You might wonder what I’m talking about. Maybe some of you are old enough to remember those times. Maybe, like me, the only injustice you recall for kids with DS was that they were in the “special needs” class in school, where they were totally segregated and made to feel like outcasts by us, the “normal” kids. And yeah, that’s pretty bad. But it’s not nearly what I’m talking about. I’m talking 60, 70, 80 years ago. When people with Down Syndrome weren’t even treated as people.

I had a conversation a few weeks ago with a lady at work. The topic of DS has come up a lot at work, because people have a lot of questions about it (which is great, and I appreciate it! The more you know, the better!), and because we have a few patients right now with Down Syndrome. The conversation I had with this woman both sickened me and made me thrilled that we have come so far. She told me that her father, who must be in his 70’s or 80’s, had a soft spot for people with Down Syndrome. The reason being, every day when he walked to school he would see a little girl with DS sitting in her bedroom window. The girl’s siblings went to his school, but the girl never left the house. She had a room upstairs that she wasn’t allowed to leave; the parents would come in and feed her and change her, but that was it. And back in the day? That was NORMAL. Some people with kiddos with DS would ship them off at birth, pretend they never even knew they existed, pretend they died. It was shameful to have a kid with Down Syndrome. It wasn’t acceptable in society. One in 600 live births is a child with Down Syndrome. But somehow it was something to be ashamed of.

I feel for those parents. I wonder, if they are still alive, what they think of how things have changed. Are they glad to see that people like their daughter have normal lives, go to inclusive schools, graduate, go to college, get married? Do they feel sorrow for the life their kids could have had, if things were different? I imagine they must, although I know how hard it must have been for people to go against the grain and fight for education, fight for healthcare, fight for rights. It’s a fight that may not be as obvious today, but it’s still being fought. It’s being fought because of the abortion rate. It’s being fought because of the trolls on the internet who think that my child doesn’t deserve to be here, to have an education, to have a job, to have a normal life. And it’s a fight that I will continue to fight, not just this month, but every day, because I never want to be the parent that looks back in sixty years and thinks, “I should have done more.” My child will never be locked in a proverbial room. He will be running around that neighbourhood with his brothers and sisters, walking home with that neighbour boy, who will still, when he grows up, have a soft spot for people with Down Syndrome. But the soft spot will be because he knows and loves Thatcher, not because he never had the chance.

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Spread the Word.

There are two sides to the “being a parent to a child with Down Syndrome” coin.
There’s the side wherein you don’t want people to view your child as “the kid with Down Syndrome,” “the Down Syndrome kid,” or, worst of all, “the Down’s baby.”
And then there’s the side where you want to shout it from the rooftops, to normalize Down Syndrome, to make people ‘see the ability’ and know that Down Syndrome is common, it’s out there, it’s not scary, and that our kids are capable of anything.
I toe this line, and which side I’m on depends on the day.
Today, I’m shouting it from the rooftops.
Today, I’m letting everyone know. Because of one word. The R-word.
Yup, the R-word AGAIN.

Now, I’ll be 100% honest. When I was a teenager, my aunt worked with people with disabilities. She would tell me time and time again not to use the R-word. And I didn’t listen. Yeah, I tried. But it wasn’t important to me. She just told me it was offensive to people with disabilities, and I didn’t really get why.

Well, that damn word came up again today, and it won’t go away, and I feel the need to explain again why it’s offensive.

So, here’s what happened. I was in a professional setting, where I was a client, and I was talking to the person working there. She was asking me about Thatcher. I said he was growing up way too fast, and her response was, “I know! It’s retarded how fast time flies!” I stopped her right there. I told her that yes, time flies, and that is many things, but it is certainly not retarded. I told her that the R-word is a word that we no longer use in our household, because of my son, who has a disability. Her answer? “Oh right, he’s Down Syndrome.”

Actually, he is NOT Down Syndrome. But yes, he has Down Syndrome. Two totally different things. Down Syndrome does not define him. It’s not who he is. It’s a part of him, yes. But he’s Thatcher, thank you very much.

Fast forward my story, I posted about this professional to a group on social media, and while most people were also appalled at what had happened, one person told me I was being a hypocrite for being offended and for educating this professional. About a month ago, I had referred to Michelle Duggar as an idiot. Yup, a celebrity who willingly puts her life in the spotlight is apparently not allowed to receive criticism on a public forum. A celebrity whose claim to fame is spitting out J-named offspring, and petitioning against the rights of transgendered people. Let’s see. I’m standing up for people with disabilities, but that’s hypocritical because I hate homophobic celebrities? I can 100% see the logic here, can’t you?

Anyway, this got me all riled up, and let to yet another Facebook broo-ha-ha. A lot of friends of mine stood up for me. There are probably some people out there that were pretty angry with me. A lot of stupid things were said from all sides of the argument. And the point? Totally lost.

So what was the point? Why was I so upset by this situation? Because even when the R-word isn’t used to describe Thatcher, it’s demeaning him. Let me explain:
The word “retarded,” at the very root of things, means “slow” and “delayed.” It’s a medical term, albeit an antiquated one. It was used to describe people who were developmentally delayed. So if you were to call Thatcher retarded, and you were a doctor, you would be from the middle ages, perhaps, but you wouldn’t be wrong.
Here’s where it goes wrong. Nowadays, we use the word “retarded” to describe things that are stupid, or ridiculous. So for example, the professional I saw today used it to describe how ridiculously fast time is moving.
So, what’s the problem with that? Simple. You’re taking a word that describes my son, and you’re making it a bad thing. You’re making it something stupid, something ridiculous, something crazy. You’re making the word mean something else, something bad. So now that word that describes my son, that word is a bad thing. By association, my son’s delays are now a bad thing.

Do you get it yet? If not, I’ll use another example. Take the word “gay.” It’s used to describe someone who is homosexual. There’s nothing wrong with that, right? But you take that word, and you use it to describe things that are lame. Maybe you are homophobic. Maybe you’re not. The misuse of the word “gay” certainly started out with homophobes and spread from there. So you take the word “gay” and you use it to describe things you think are lame, and things you don’t like. You don’t like that movie? “That movie was SO gay!” …. see what you just did? You just took the word “gay” and made it something bad. By association, if a person is gay, they are now bad, too. You don’t have to call a person “gay” to make it offensive, you just have to use the word in an offensive context to basically insult every homosexual person on earth.

The R-word is the same. You’re taking a word that describes my son, and you’re making it bad, making it wrong. It might have started out as a slur by people hating on people with special needs, but even if you know or love someone with special needs, your hateful use of the R-word is them. That’s why we need to Spread the Word to End the Word. We need to stop using this word, period. You’re never using it “in a non-offensive way.” It’s always being hurtful, whether it’s intentional or not. Maybe you think I’m a hypocrite. Maybe you don’t. I don’t care. I just care that you think about your words before you speak, and you think about what those words mean and who they might hurt, intentional or not. I’m doing my best to, as well.

And if I correct you, or point out your use of the R-word? I’m not trying to offend you. I don’t judge you. I know it just slips out, because it used to slip out of my mouth, too. I’m just telling you because the more we can spread the word and educate people on why the word hurts, the faster we can eradicate it. The faster we can eradicate antiquated ideas on what kids like mine are, what they can do, and what defines them. The faster we can make people realize what people like Thatcher can do, rather than focusing on what they can’t.

That’s what side of the coin I will always be on. Thatcher’s side.

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.

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

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. 

Holland

I received an email yesterday from the new parent contact at my local Down Syndrome Association branch. We joined a few months ago so that we could meet other families of kids with DS. In her email, she asked if there were any members that had a story they would like to share for their new parent information package, which is given to new parents when they have a baby with DS at the hospital. I sent her a link to my first blog post, but her request really got me thinking. I don’t know if I can write something concise enough for her particular request, but I wanted to write out what I’d want to know as a new parent, in case anyone stumbles across this blog and could use my words and experience.

To start, I’d like to let you all in on a nice little poem that is currently included in the LDSA new parent package. It’s called “Welcome to Holland” by Emily Perl Kingsley. Basically she wrote it in the 80s on her experience with having a child with special needs.

 

 

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

 

 

When I first read this little poem, I couldn’t get through it. I sat there on the words you’ve landed in Holland and there you must stay. There I was. Smack dab in Holland. And I couldn’t leave. It wasn’t anywhere I had pictured myself. I didn’t want to be there. I couldn’t read the rest. I put that poem back in the folder and forgot about it.

I tried to read it again when we were discharged from the NICU and I had gone through all the papers we had received and was reading over some of the information. Again, I didn’t want to be in Holland. I put the poem back again. 

Finally, a few weeks later, I got the courage to open up that folder that said LDSA on it. I took out the poem and started to read. I got to the part about the windmills, and the tulips… and a crazy thing happened. I was there. I wasn’t in some disease-ridden no-man’s land. I was in Holland. It wasn’t where I wanted to be originally. But I looked at Thatcher. And he wasn’t what I had anticipated. And he was beautiful.

So, new parents. Maybe it takes you a while to read the whole poem. But you’ll get there. And when you get there, you will probably cry when you read it. That’s okay. I still do. Except that at first, I cried because I didn’t want to be here. And now, I cry because it’s so amazing.

The point of the poem, and the point of what I’m saying, is that it’s okay to be disappointed. It’s okay to cry. This isn’t what you expected. You expected the prom queen, the valedictorian, the PhD. You expected the kid that would reach every milestone early and be walking by six months. You expected a healthy baby. And, more than likely, you didn’t get any of those things. Instead, you got a trip to the NICU. You might have gotten a surgery or two. You might have a congenital heart defect on your plate, or hearing problems, or a g-tube. And it’s really easy to look at your newborn baby and see them as a disconnected medical diagnosis in that incubator. You might hold their hand and feel love, but feel disconnected. And that’s okay. You will get through this. You will get to know them. You will see them look at you with love in their eyes, and you will be seeing those tulips in Holland. When they have their first smile, you’ll see the windmills gently turning in the breeze. They will fall asleep on your chest with their little arms wrapped around you, and you will know that Holland is exactly where you want to be, no matter how you got here.

But the trip there is hard. And there are bumps along the way. And that’s okay. Just keep looking ahead for the tulips. Don’t close your eyes and pretend they aren’t there. Do what you have to do. Cry. Call your best friend. Cry some more. Research Down Syndrome. Hold your baby, even if there are tubes and wires hooked up to them. Grief is a process; there are hills and valleys to it. One day you will think you are okay, and the next you will hear about somebody else’s child who is crawling and your son or daughter is barely rolling over. It’s fine to grieve about it, as long as you keep looking ahead. Your child will get there, it’s just more of a scenic journey. They might have to work a little harder, but it will be so much sweeter in the end. 

So…. Welkom in Nederland, mijn vriend.