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.