In this case, a picture truly is worth a thousand words….
Beyond the absolute mess of our house (full on renovation mode, with everything from the basement now taking up residence in our living room/storage container), all I see is this: our incredible, amazing, awe inspiring, reminds me of what a miracle she is everyday, little girl, doing what some people never thought she would do. She’s doing exactly what we said she would do: pulling herself up to stand, on her own, in her own time.
Our world works in Lily time – everything she does is slow but deliberate. She thinks every single step through and takes her time to look at all of the pieces; figuring out how to mesh them together in just the perfect order, and then one day – she just stands up, like she’s been doing it her entire life.
The crib got lowered tonight. We’ve been waiting 2 years to do that and it may be the best milestone yet.
When your child has a special need, regardless of whether it’s a developmental disability or a medically based complexity, parents want to champion these issues: to bring their knowledge and experiences to people so that we can educate and bring awareness to what makes our child special. My problem is that I don’t know where to put that focus. Am I a “down syndrome mom”, or a “heart mom”, or an “adoption mom”? Lately, I’ve been finding that I really want to do more, but if I’m going to choose one area to throw my voice behind, how do I decide which mom I’m going to be?
One of the problems we have in just picking one, is trying to fit in. I’ve mentioned it briefly before, but we don’t always know where the best place is for us. We’re lesbians who chose to adopt, as opposed to trying to concieve our own biological child – a little more rare in the adoption world, where the saying is that “you come to adotion through loss.” That wasn’t the case for us – we always knew that we were going to adopt and were excited about that fact.
We chose to adopt a child with Down Syndrome, in fact, leapt at the chance to adopt a child with Down Syndrome. We often feel that some people are confused by that choice; in fact, we had one adoption worker who asked us directly, “you know that you could have a normal child, right?”. We (well, Jess more than myself) had experience with Down Syndrome that helped make it an easy choice. We knew that having a child with DS, along with the challenges, would bring us incredible joy. But, for other DS parents, this wasn’t their experience and it’s hard for us to relate to the grieving/acceptance that they had to work through, and I think it’s hard for them to relate to us as well. We love being a part of the DS community but sometimes it’s easy to feel a little like outsiders.
Medically, as far as we’re concerned, Lily’s heart is actually a miracle. I remember, so clearly, sitting in the small room with Lily’s surgeon and him confirming the PVS diagnosis with us. He told us that our life was going to go one of 2 ways: 1) This was just how her veins are and she would have no other issues. He quickly followed by saying he really didn’t think that was our road; or 2) The veins would close up completely and the disease would be fatal. He couldn’t give us a timeline or any more information but that was it. I remember, sitting for hours on my phone, trying to find ANY information I could about PVS and just being bombarded with the same sentence in every report: “PVS is extremely rare, progressive and usually fatal.” But we’re here, 2.5 years later and Lily is winning. Her CHD is the scariest part of our life, but when compared with other heart warriors, we’re actually so lucky. Her original diagnosis of an AVSD and Coarct are common in kids with DS and the surgeries to fix those issues have held out and her heart – if you look at just her heart – is amazing. I sometimes feel a sense of survivors guilt when it comes to being a “heart” mom because she has been doing so well.
The other issue is that with Lily, all of this is so interconnected that it feels impossible to seperate them and just focus on one. In my head, I compare her journey to a party. She started at the Down Syndrome Party (guests included low muscle tone, delayed motor skills & speech but a serious love of dancing) and that came hand in hand with her original heart conditions; her heart brought her PVS to the party; the PVS may have asked the Cardiac Arrest to come along or it just decided to crash the party to create some havoc, but it brought it’s groupies: HAI (hypoxic-anoxic brain injury) and CVI (cortical visual impairment). Suddenly, they are all in this one gigantic room and you just have to shrug your shoulders and start handing out snacks.
For this week though, National Down Syndrome Awareness Week, this is where my heart going to be. The Canadian Down Syndrome Society has an amazing campaign going this year that highlights 14 (7 pairs) of people who truly celebrate Down Syndrome. I’ll try and highlight some of my favourites over the week, but if you’re going to start anywhere – start with Max and Libby (who personally sum up exactly what kind of relationship I want Lily and her siblings to have). As well, make sure you check out the CN Tower on November 4th as it’s shines blue and yellow to celebrate this amazing week!
Lastly, because it’s been a while, I just thought I’d share a little love from Lily and Gus.