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.

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.

Birth

So I know that before I was pregnant I didn’t care in the least for birth stories. Then, around 8 months, I started reading them like crazy. Like them or hate them, I figured I would post one at least for my memory of the happiest, scariest time of my life, and the moment before things came crashing down around us (and subsequently we are building them back up.)

I should actually start pre-natally, because that’s where Thatcher’s story starts. I had a pretty normal pregnancy, really sick most of the time, which is great when you are a nurse and deal with smells all day, but otherwise normal. I saw my family doctor for the first few months, then saw an OB at 26 weeks. I’ve had my family doctor probably three or four years now, and while she’s not the sharpest crayon in the box, she’s really nice so I’ve stuck with her. This would turn out to be a flaw.

I chose to do the IPS screening offered to every mother in Ontario, not really because I wanted to but because my doctor gave me bloodwork forms and I said “okay, why not?” You also get an extra ultrasound out of it at 12 weeks, and I was all for seeing my baby an extra time. I found that if I didn’t see him for a while, I got nervous that I had miscarried or something had happened, so it reassured me to see him again. At around 19 weeks, I saw my doctor for a routine monthly appointment.  “Just so you know, you were positive for a marker on your IPS screening,” she casually mentioned. I had kind of looked into this by this point in time, so to me it seemed like kind of a big deal. “Oh no,” she told me, “it’s nothing to worry about. This just means your chances of your baby having Down syndrome or another genetic condition are about one in 100. That’s very small. It happens sometimes that people get false positives or false negatives. I wouldn’t worry about it.”

Now I’ve heard that when people are diagnosed with cancer, they basically stop listening once the doctor says the word ‘cancer.’ I can understand this. Once she started talking, I panicked. Oddly I remember trying hard not to cry. I don’t know why, because this news was okay to cry about. But I tried not to cry in front of her, thinking that if she wasn’t worried then I would look like a baby crying about it. I knew in my head I should ask about amniocentesis, but at that moment I couldn’t think of what to say or do or ask. My doctor never offered. She said it would be fine, that my baby would more than likely be perfect, and sent me on my merry way.

In case you don’t know (and most won’t, I didn’t), my positive screen meant I went from a 1 in 1480 chance of having a baby with a chromosomal disorder to 1 in 100. That’s a pretty big jump. But I brushed it under the rug. I told my husband, and told him my doctor said we’d be fine, and we both “forgot” about it. I had a feeling in my gut, but I ignored it and ignored it. I rationalized that doing an amniocentesis has a 1 in 100 miscarriage rate, so why would I up my chances that something could go wrong?

If I could go back in time, I’d be seeking a new doctor right away. I’d be asking the right questions. Would I have aborted my baby? I highly doubt it. But would I have been prepared? Absolutely. I would have read everything I could on Down syndrome. I would have been ready for this journey. But instead I was blindsided five minutes after his birth. My exciting, wonderful day was taken away from me. I spent more time crying in grief on his birth day than crying in joy. And that’s something no parent deserves.

Oh, but I meant to talk about his birth day. Thatcher was born on a Tuesday, but I actually was in early labor WAY before. People always tell me how long they were in labor for, but I honestly have no idea. On the Saturday, I had a coffee date with a friend. She drove all the way from Tillsonburg to see me, and we headed to Williams Coffee Pub. About ten minutes in to our coffee date, I already felt like death warmed over. I lasted almost an hour before I had to make her drive me home; I thought I was going to throw up in the middle of Williams. I laid on the couch miserable, threw up, then spent the rest of the evening trying different positions to get my intense back pain to go away. Was this it? I had no idea. They say when you’re in labor, you just know. I didn’t.

I went to bed Saturday night and got the last sleep I’d get for… days? Weeks? I woke up Sunday morning and felt like my pelvis had been smashed with a sledgehammer. It honestly felt like somebody beat me up in my sleep (I guarantee my husband did not!). My back was also killing me. My mum, who I had spoken to the day before, wanted to come down and take me and my husband out for dinner. So I got up, got dressed, I don’t even think I put makeup on, and we headed to Boston Pizza. I felt like garbage so I ordered just a soup, took one bite, and asked for more crackers. I ended up eating exactly one bite of soup and eight crackers. I remember waddling off to the bathroom with pain in my pelvis and my back and thinking “I’m going to be one of those women on a TLC program that has her baby in the toilet” because I was so sure he was coming imminently. But thankfully, he waited. I went home and took a short nap, only to be woken up by intensifying back pain. I called my aunt, who is a doula, and she came over and went over exercises with me for pain management. She told me later that she was pretty sure things were happening, but at the time she said nothing, and all I could think of was “Dear God how long will I be in this pain for?!” I was worried that it could be days!

By 0100 Monday morning (/Sunday night) the pain was finally coming in waves rather than sporadically, and I started tracking it using an app, the contractions were 50 seconds long and three minutes apart, so Dev convinced me to head to the hospital. Being in the car, sitting down, was so painful I could hardly breathe. We got to OB Triage and they checked me… Still 2cm! No progress whatsoever, that’s what I had been Friday when I saw my OB. You have no idea how disappointed I was. I felt like I was going to collapse from the pain,  and they were sending me home?! They offered me some morphine before I left but I didn’t want to look like a drug seeker so I refused. What an idiot I was!

So we went home, where I tried to rest and failed miserably. I tried to take a bath to help with the pain, but sitting was too painful and I ended up hunched over the side of the tub with every contraction, nearly in tears. Finally, about seven or eight hours after we got home, Dev tried to convince me to go back to the hospital. I’d stopped tracking my contractions, reasoning that it didn’t matter how close they were, but the pain was getting even more unbearable. In tears, I told Devin that we shouldn’t go to the hospital because they would just send me home again. He told me at least we could go get something for pain. Not wanting to look like a drug seeker (it must be the nurse in me), I kept refusing. Finally I gave in, as I couldn’t take it anymore.

We got to OB Triage (again) after a long drive with me in the back seat, hunched over Devin’s seat trying not to rest my bottom on my seat. I thought to myself that I had better not have to make the trip again because I didn’t think I could handle it. I was checking in at the desk when (another) contraction came on, and I was leaning over the chair in the reception area struggling to breathe, when someone started rubbing my back. “Don’t touch me!” I screamed, thinking it was Devin. Surprise! It was the nurse that would be looking after me. Oops!

Our nurse, whose name I’ve now forgotten because I took my sweet time writing this, was amazing. She was totally no-nonsense and at first I hated her, thinking she was being mean. She immediately told me I was breathing wrong, and, rather harshly, coached me on proper breathing. I can’t begin to express how much she helped me with something so simple. She checked me and found me to be 3 centimetres! Hooray! We were finally progressing, even if ever so slightly. I don’t remember what time it was, but probably around 1400 by this time. The nurse asked me if I wanted something for pain, and this time I quickly agreed to it. She gave me some morphine and gravol, turned off the lights, and let me sleep for a few hours. I think the morphine lasted about an hour and a half before the pain started getting hard to bear again, but the hour and a half of sleep with only mild contractions? Heaven.

Finally at 1830 I was in quite a bit of pain again, and I asked our nurse if she could check me again before she left. HALLELUJAH! I was four centimetres! The magic number! I was told I was going to be admitted.

Right on cue at 1900, our L&D nurse showed up at the door, and SURPRISE! I knew her. The nurse, Jess, recognized me immediately as we had worked together at a nursing home and at my current job, where she worked really briefly. She wasn’t sure before if she knew me because my last name had changed. She asked if I was okay with her being my nurse, and I was hesitant because, well, how awkward, right? But I figured all my pride was about to go out the window anyway so I may as well get used to it.

I was glad from the get go that I had agreed to let Jess be my nurse. She only graduated a few years ago, but she was knowledgeable and friendly, and when I stated that I wanted to wait a while to get my epidural, she immediately protested and convinced me that getting it ASAP was the way to go. I protested a bit, but considering I couldn’t even walk to the washroom (5 feet from my bed) without at least a few contractions stopping me in my path, I quickly gave in.

I think the anesthetist showed up around 2200, and had a student with him. He asked if it was alright if she put in my epidural, and at that point I would have let my Frenchie mix put it in so long as it helped. Honestly, the worst part of the epidural was the positioning you have to have for them to put it in. They sat me on the very edge of the bed, which, with back labor, is an absolute treat. Then you have to get so far to the edge you feel like you’ll fall off, so Devin had to hold onto me so I didn’t fall on the floor. They raise the bed up a gazillion feet so they don’t have to bend, so you’re dangling precariously off the side of this bed in the air. And then you have to bend your back around your bump, and suck in your belly button. I can imagine if it didn’t feel like your coccyx was broken, and you weren’t having insane contractions, it wouldn’t be a big deal. It also wouldn’t be such a big deal if the student didn’t try for FORTY FIVE MINUTES to put it in. Forty. Five. Minutes. Honestly. WTF. Apparently she was having issues because of my tattoos on my back (which there is a huge gap between).  Now, I don’t know if you’ve ever tried to hold still for forty five minutes, but it’s effing hard. Especially when you are in pain and it feels like, for lack of a better description, your ass is on fire. I ended up sweating so profusely that Jess had to grab a towel and towel me off. My entire gown was soaked. My hair was soaked. The makeup I had applied prior to coming in (because, you know, I had to look cute for pictures!) was gone. I was a mess. Finally, after forty five (FORTY FIVE!) minutes of her trying, the doc came back, saw that she still wasn’t done, and told me he would try. He promised that if he couldn’t get it in five minutes he’d give me a break. He actually had to re-freeze my back because the lidocaine had worn off. That’s how long this chick took. He took one little poke annnnnnnd…. BAZINGA. Got it in there. That guy is my hero.

When people tell you to just take the drugs, TAKE THE DRUGS. Honestly my life got so much easier after I got that epidural. I spent time chatting with Dev, chatting with Jess, shooting the shit.. no problems. My one side was totally frozen, the left side was not so much, but if we rolled me onto my left side it froze up too. Life was good.

And then. I was laying, I think, on my right hand side, when my left starting giving me too much pain again. So Jess and another nurse helped me to roll onto my left, to help the freezing kick back in. Suddenly, the baby’s heart rate dropped in half, to about 65. The nurses got me back onto my right, but his heart rate remained low. We moved me back and forth, and a zillion nurses came in and started putting their hands up in my personal area, massaging the baby’s head to try to stimulate him. They gave me a venti mask and told me to do some deep breathing. You have no idea how terrifying it was. I looked at Devin and he looked at me and at that moment I thought we were losing our baby. I didn’t know how to react but to keep breathing deeply and try to clear my mind of all the horrible thoughts I was having. Finally, after three or four minutes, our baby’s heart rate went back up to around 120, where it should be.

I don’t remember whether it was before or after the decels happened, but at some point they decided that the normal monitors that monitor baby’s heart rate weren’t doing a great job, and decided to give him what they refer to as “a clip,” it’s basically a monitor they actually clip on under baby’s scalp that tracks the heart rate better. So we got one of those. Then the clip started malfunctioning and reading all wrong and dropping the signal… so we got a new clip. My poor guy had all kinds of scrapes on his head : / But at least we knew what was going on. Unfortunately, with the clip on we could hear the heart rate even more clearly as the machine beeped with every heartbeat. So I spent most of the night listening to the beeping, and watching the monitor in a panic. Thatcher had about three more episodes of decels, first because I was moving, but then sometimes just because the doctor was checking me, and each time it was just as terrifying. I ended up spending the majority of my labor lying flat on my back trying not to move my leg, even though the contractions kept coming in my one hip/leg.  But I would do anything I had to to keep his heart rate where it needed to be.

Everything progressed pretty slowly with my labor, but by about 0630 Tuesday morning I got the wonderful news that I was finally ten centimetres! It took twelve hours to go from four to ten, but I did it! Without drugs or anything to help me along! I was told that because it was around shift change, we wouldn’t be pushing for a bit.

So of course the wonderful thing about the mornings in L&D is that apparently there is a lot going on, my OB was actually on that morning but he was in surgeries all morning so I got the other doctor. Except that she had a c-section to go to, so I still couldn’t push yet. Luckily, another phenomenal nurse came to replace Jess (again, it’s been a month and I forget, so let’s call her Amanda? It had an A in it I think. Amanda sounds good.). Amanda sat around and chatted with me and shot the shit while we waited, and waited, and waited some more to push. I had been under the impression that once you were 10cm, they took away your drugs so you could feel your contractions. Luckily, this wasn’t the case. In fact, Amanda encouraged me to push my PRN button as much as necessary. When I told her it wasn’t necessary, she told me to push it anyway. I think I pushed it maybe three times all night, then ten times in the hours before he was born, and I’m glad I did!

It was probably around 1030 when I was told that we were finally ready to push.

_______________This is where I left of 9/29/13. Continuing now. Whoops ______________

Okay. So. Back to the story. I feel like I’m a writer on How I Met Your Mother, getting totally off track and then jumping back in. Where was I? I guess pushing. The most dreaded part of most people’s labours, no?

So around 1030 I got word that we were going to start pushing. Like any expectant mama, I had NO IDEA what to do. There are certain things about babies and childbirth that you just can’t prepare for. Pushing, and breastfeeding. I mean, you can read and prepare, but both feel really weird and you just look at the nurses like.. “Help me” and hope that they can tell you what to do. So that’s basically what I did. I looked at Amanda (or whatever her name actually was) and asked her wtf I was supposed to do. It’s actually pretty easy. Take a huge deep breath, then hold your breath and push three times. All whilst holding your legs in a very unattractive position. I told the nurses not to let me know if I pooped. They said “Why would we?!” I’m 99.5% sure I pooped. Whoops. Who knows? I’m glad I don’t.

So anyway. At this point I was so frozen that I couldn’t feel anything, and apparently you’re supposed to push only when you’re having contractions. Well. I had no idea if I was having contractions. I hadn’t felt one in twelve hours. So Amanda had to sit there with her hand on my belly, feeling for them. Just chillin’ near my feet, staring at my girly parts with her hand on my tummy. Could have been super awkward, but by then all my dignity was gone and I really didn’t give a hoot; the queen mum could have been there and I wouldn’t have cared. So we started with her feeling for my contractions and me pushing three times; I started realizing that after pushing three times we still had some time before the contractions were over so I asked if I could push more times. Amanda looked at me like I had three heads and said that of course I could, if I could handle it. So I started pushing four times, then five. Unfortunately, my contractions had slowed down to about every six minutes, so there was a lot of lull in between pushing. Pushing was maybe thirty seconds, then a six minute lull, then thirty seconds of activity, and so on. So of course they decided that it would be best to give me pitocin.

Now here is where it gets really fuzzy for me, because it’s been nineteen weeks and I can’t remember the order of things. So if I’m inaccurate, and you are a L&D nurse reading this, please forgive me. Things are all jumbled up and I probably have the order of events backwards and sideways.

So at some point in time they decide that pitocin would be a good idea. I wasn’t really all for it, because I wanted to do things naturally (save for my epidural), but we were nearing the end and I thought if it could get my baby boy outta there safely and quicker so we didn’t have to worry about decels and whatnot, well then by all means, go ahead. So they started the pitocin in my IV. About thirty seconds after it hit by bloodstream, the monitors went crazy. Thatcher’s heart rate was decelerating again, into the 60s. Of course the pitocin was immediately stopped, but a zillion people ran back into the room, rubbing at his head and trying to get his heart rate back up. I’m pretty sure they may have bolused me with some fluids at that point. Honestly things are a blur. All I know is, my little bird did NOT want pitocin; he wanted to do things naturally, apparently.

At some point in time, one of the residents checked to see how far Thatcher’s head was. When they checked, they were kind of weird about it, because they couldn’t tell which way he was facing. So the doctor put her hand up there. She couldn’t tell which way he was facing. She asked the nurse to check. She couldn’t tell either. They usually can tell by feeling the baby’s fontanels, which are the soft spots on their heads that help baby’s head kinda mould and shift during labor. Looking back, now I know that babies with Down Syndrome have different fontanelles than typical babies, so it makes sense that they were confused. But none of us knew this, so they were having one heck of a time trying to figure out where he was facing.

In the end, the doctor ended up sticking her ENTIRE HAND around his head and turning him about 270 degrees. Thank god I was frozen, or I would have felt totally violated. All I thought in the moment was “I wish she could just pull him out!”… enter image of Homer getting his hand stuck in the soda machine because he’s holding onto the soda. What a lovely image. I’m sure I just got WAY too personal for some of you. My blog, my gross stories. Sorry!

So anyway, I feel like my story is probably backwards and that the turning of the baby came before the pitocin, because that would make sense, but at some point, they started getting worried because of the decels and the fact that he was still not far enough out and I had been pushing for a while. I mean, really, in an hour I could only push 10 cycles because things were so slow going, so you can’t blame him for still being in there. They started talking about how I would need an emergency c-section if he didn’t come soon. Well. I am stubborn, and there was NO WAY I was going to have a c-section. I just knew I wasn’t. Nothing wrong with it, but I hadn’t gone through all of this dilating and pushing to have him just cut out of there. So I started pushing five times per cycle. I started keeping pressure so that he would stay further out even when no contractions. And pretty soon after (maybe two push cycles), he was out!

Thatcher was born at 12:20pm. Everything happened SO fast after he was born. Thatcher had the cord around his neck and legs, which is a bit of an emergency. They had asked Devin earlier if he wanted to cut the cord, and he wasn’t sure. He thought maybe he would, but he was scared. We were hoping to do delayed cord clamping, but they obviously only do it if the baby is not in distress. Of course, Thatcher WAS in distress, and it had to be cut ASAP. They asked Dev if he wanted to cut it NOW, or not at all. He was a champ and cut it, and they quickly got him unwrapped from the cord so he could breathe.

Our hospital is really big into skin-to-skin, which is great. HOWEVER. Thatcher had passed his meconium (that first sticky, tarry yucky poop) whilst he was being born, and was COVERED in it. They put him on a blanket on my tummy, and it was all I could do not to vomit. I looked at him, and I wanted to see how beautiful he was, but all I could  see was how nauseous I was in the first place, and somebody put him on me covered in poop. I’m sure he was gorgeous anyway, but I could hardly look. Luckily, I can’t stop looking at him now so he really is beautiful! We were lucky that he didn’t have any ongoing health issues because of the meconium, some babies can aspirate it or swallow it and run into tons of health issues, but the team was great and got him all suctioned out and it didn’t effect him at all.

So anyhow. They let him sit on my chest for all of about five seconds, which honestly was okay with me, then took him over to the workspace to resuscitate him. Looking back over his paperwork, I learned that his APGAR was three, which is critically low. APGAR basically is a scale that assesses the health of a baby when they are born, and then again five minutes after. Luckily for us the team working on him was great, and at the five minute mark he was up to nine out of ten, which is amazing.

As for me, somebody yelled out “She’s hemorrhaging” and the doctor got right to work, I think they gave me some more pitocin to get things to stop, and worked away down there… there is a reason that babies are born from an area that you can’t see past your swollen tummy… some things I wouldn’t want to see and that was one of them. Whatever they did worked just fine and I am 100% okay. That’s all I need to know about that. Devin did mention to me that there was “a lot of blood on the floor” but since he’s not in the medical profession I have no idea what he means by a lot of blood, and I probably don’t want to know. Some things are better left unknown.

Back to Thatch. They finally finished suctioning him and working on him and got him all wiped off and wrapped up and gave him to me. He was this puffy, squishy bundle in blue, and he was so TINY! It was unbelievable. We just looked at him in total shock. He was amazing. I don’t think I cried, but Devin did. It was just amazing. We got to spend a few minutes just hanging out with him while the nurses got the room cleaned up from his birth.

And then. And then. It happened. In the midst of all our excitement, in the midst of our absolute relief at having this beautiful baby in our arms, after all the stress of labor and after all the worrying that we had gone through. Then it happened.

The doctor came over to us, and said the words I never wanted to hear. “Did you test positive for any genetic markers?” Of course I had. I told her yes, and she told me that they thought that he had Down Syndrome. I looked at him and I knew. I don’t know if I cried right away. I can’t remember. It was like being back in my doctor’s office, 22 weeks earlier.  I don’t know what I said or what I did. I know that Devin told me that they were just seeing things. We rationalized that yes, his eyes were almond shaped, but so were mine. They had to be my eyes. After four days of labor, after numerous scares, thinking we might lose him at the end of the game, they had to be my eyes. He couldn’t have Down Syndrome. What IS Down Syndrome? We didn’t really even know. We just knew that Becky on Glee had it. That we had seen people who had it. We didn’t know any of them.

In all the 22 weeks since I got my test results back yet, I had a feeling. A horrible feeling in my gut that something was wrong. I told myself that I was being crazy. That this was how every mum felt. I was being paranoid. I told myself that there was no way anything was wrong with my perfect, smart, wonderful baby. He was going to grow up and be a professor. An astronaut. A hockey player. A scholar. He was going to be perfect. Not one time did I EVER look up with DS actually was. Not once. I don’t know if it was too hard and I couldn’t, or if I was trying to think positive. I have no idea what I was thinking. But I didn’t know what we were in for.

Now I’m going to say something horrible. It’s horrible and it makes me a horrible person but it happened. I wouldn’t say it, but when Thatcher was born someone sent me a blog about a woman whose baby was born with Down Syndrome (found here: http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html), and hers was so open and honest, and it really helped me grieve, and if I can help anyone by being honest myself then I will do it. Plus, I’m over 5000 words here so if you’re still with me by now, then you’ll still be with me after I say it.

Here it goes. As soon as they told me, I knew. I knew he had it. And as soon as I knew, the first thing I wanted to know was how I could get out. Get out of the hospital, get out of this life. Get out. Could I put him up for adoption? Could I just let someone else take care of him? I couldn’t do it. I couldn’t be the mama of a baby with a disability. There was no way. This wasn’t in my life plan. I debated, in my head, asking the nurses how adoption worked. How would I explain it? I wondered these things. I am ashamed of myself for wondering them. But I did it. It happened.

And then. And then I looked at him. And then I held him. And then I swaddled him up and cuddled him. And then I looked into his beautiful eyes and I knew that I was his mama, and he was mine. He was mine from the time he was a tiny sesame seed in my tummy. He always had been and he always will be. Every second since he had existed, he had had Down Syndrome. It happens at conception, things get a little mixed up, and babies get an extra dose of awesome. Every second I had felt him kick, and rubbed my tummy to have him rub me back. Every time I had talked to him, or sang to him in the car. He had always been my beautiful baby boy. And he had always had Down Syndrome. Nothing had changed. The only thing that had to change was my attitude.

Thatcher put us through hell during his labor, and for the first few weeks of his life. We were in the NICU from August 28 (the day after his birth) until September 12, but that’s a different story. We had ups and downs like a roller coaster, which ironically made me start this blog, which I never seemed to find time to update while we were going through them.

While in the hospital, I struggled with the idea that he had an extra chromosome that could change our lives, and I know that in the future I will probably struggle again. Maybe someone will say something mean. Maybe he will have troubles in school. Maybe, maybe. We came home, and I finally got to hang out with my baby boy, just he and I. No nurses barging in, no doctors. And I started having serious talks with him. I told him stories and snuggled with him. I sang him songs without worrying that someone would have to deal with my terrible voice from the hallway. And in that time, while Devin was at work and I was home with Thatcher, I fell even more in love with him. And now I know, everyone has their maybe. Maybe the zombpocalypse will happen tomorrow and we will all die. Maybe a plane will fall out of the sky, Donnie Darko style, and kill me. There are a thousand maybes that can happen to all of us at any time. But knowing and loving my little bird, there is no maybe about that. I do know him, and I do love him, and the maybes can happen, but they will never change that.

Labels

Okay so.

My last blog was started September 19, 2013, and last updated September 29. Then I forgot about it for over three months. Whoops.

I’m going to continue that one because it’s something that I would like to reread in the future, and I still want to post it, but I wanted to apologize to everyone who said they were going to follow my blog, only to have me stop blogging after one post!

I will finish my original post tonight, with a break between when I started and now.

We got a new computer for Christmas, so I’m hoping that makes it easier to spend some time on here, and Thatcher actually has a good bedtime routine happening, so I should start having some time to blog in the future.

I can’t promise what I will blog about. There are a lot of blogs out there about Down Syndrome, and I guess that’s kind of what mine will be about. Except that really, that’s not all that my little family is about. I have found that in my four months of being a mama, the thing that annoys me the most is when people send me articles, posts, blogs about kids with DS. Now, close friends of mine might send me things sometimes, and that is okay. They screen them and figure out what I might like. And I have a few blogs I like to follow, about families with kids with DS. That is also okay. But what really grinds my gears? When people I went to high school or college with send me links about kids with DS, and they haven’t even talked to me in five years! What is that?!

I have a hard time getting into words what I think is wrong with this, but I will try.

Basically, there is a Facebook group I follow called Lose the Label (https://www.facebook.com/Losethelabel). Their campaign is basically about how people with Down Syndrome are just that – people. They happen to have Down Syndrome, but that is not their defining characteristic. They are just regular people first and foremost. I feel like, when randoms who I haven’t talked to in a zillion years message me links and photos and videos, that they have forgotten this, or that they are not aware. They don’t know that we are just a normal family. Thatcher is a normal baby. Does he have Down Syndrome? Yes. Is he different than any other baby? No. We do normal mama/baby things all day. We get up, we snuggle, get dressed, do tummy time, eat. He has his bath every night and I sing a ridiculous song I made up that makes him laugh, and he goes to bed. Everything in between is normal too. Yes, we have an OT come to our house every few weeks. And we have seen a few specialists. But honestly? That’s once in a while stuff. In our every day life, we are boring, run of the mill people. Just a mama and her beautiful baby bird, who amazes me every day with the things that he has accomplished and the strength and personality that he has. No matter what his chromosomes say, that is what we would be. We are not different, and I don’t expect to be treated that way. I don’t appreciate being labelled “That girl whose baby has Down syndrome.” I am the girl with the beautiful baby with slate/blue eyes, and wonderful, gummy smile, and the chubbiest cheeks in the world. That’s all.

So, now that I’ve been lost on a tangent, yes, I might post some things about DS. I might post some things about my crazy dogs being lunatics. I’ll post places we go, things we see. But mostly, I’ll just post about my beautiful, bouncing baby bird.