Some days are easier than others to sit back and appreciate the little things. I love looking at the world through Zoe and Ailsa's eyes. I especially love to see Zoe from Ailsa's perspective. She thinks her sister can do anything. She sees Zoe as strong and protective. She has said before, "If Zoe is with me I can be brave enough because she will protect me." Both girls were so excited when Zoe came home last Friday. They spent the whole weekend laughing, smiling and playing. We even had a chance (first time this winter) to go tobogganing! Ailsa can sometimes get a bit scared with too much action so we weren't sure how she would take the bigger hills but with Zoe by her side, she loved it! Our toboggan is big enough that Zoe can lie down with Ailsa in front or back of her. And if we want, an adult can even squeeze in if they help Zoe sit up. We had a great time watching the girls toboggan together as well as trying it out for ourselves. We even let Grandad have a turn since he did most of the work hauling Zoe back up that big hill!
Some days it is not as easy to put on the positive front for others. And hearing about someone's pain or anger or frustration can be difficult. For the most part, Gavin and I really are positive people who see life from mostly a positive lens. But we do think it is important to talk about the negative stuff too. Our hope is that someone out there will read our blog and say, "I am not alone."
Dealing with the day to day grind of taking care of someone with severe disabilities takes its toll and that honest expression of the frustration with the little things is quite therapeutic. For us, the writers. And hopefully not too painful for you, the reader. Fortunately we have a great sense of humour and can laugh at ourselves, so at the very least, we are entertaining. At least we find ourselves entertaining... Sometimes humour is the only thing that keeps us going. Even if it is dark humour...sometimes that is what it takes.
No matter the type of day/lens we are looking through there are a few things that never change or get distorted by our emotions. Gavin and I are amazingly lucky to have two beautiful, wonderful, amazing, funny girls. We did not believe we would have biological children together due to Gavin's cancer history. So when we found out we were pregnant with Zoe- we were over the moon. And having her born without any warning that something was different never changed that feeling for us. When people ask when we felt attached to Zoe (I know some parents struggle with this), I always honestly respond- that first pregnancy test that was positive we were hooked immediately. I am a mother and I believe a mother's love should always be unconditional. It does not matter how many genes Zoe has or does not have or any of this other crap, I love her just as she is. And lucky for us, she just happens to be amazing! If you are a parent who does not feel this, don't feel guilty. Just spend some time with your child and you'll get there.
Other People's Lenses
You know that really annoying lady who is always showing off pictures of her children and telling you stories about them and you are thinking, "Enough already!" I could not understand these people. Until, I had Zoe. And I KNEW with absolute certainty that she is so wonderful and amazing that EVERYONE wants to look at pictures of her and hear stories about her. This is not just the way I see things, this is a FACT.
In the beginning I thought if I explained Zoe's differences it would make her accomplishments mean more for people who do not really know Zoe. I found myself "showing off" Zoe's various abilities. "See look- she can sign, she can walk, she can feed herself Cheetoes. Don't you see- she is AMAZING!" And like those other annoying moms, I am sure some people were like, "Yeah, yeah, we get it, you like your kid."
What I didn't realise for some time is that there are people who make up a picture in their head of what Zoe can or can't do. What she feels or doesn't feel. And I thought, "They just misunderstand, if I just explain it right, they will get it." And then I began to realise, that some people just do not want to question themselves. Why they are so uncomfortable around people with disabilities? Why do they make these judgements and refuse to amend them even when given evidence? I don't know why some people think that different people in this world have different levels of worth. One life is more precious than another instead of all life being precious. Even some of Zoe's own family do not see her as equally valuable as a "typical" child. This is mind boggling! The only way I can really wrap my head around this is to assume it comes from a place of fear that people just don't want to go there.
Lucky for us- Zoe has so many supportive and amazing people in her life. We can not imagine how we would make it through without all of you- so Thank You! And you KNOW how amazing Zoe is because you read this blog! And you never, ever, ever skim through when I am going on and on and on...
Time for Us
I mentioned in the last post a trip Gavin and I had planned and hoped to take. Gavin and I were able (with the help of several people!) to coordinate support so we could go away on our planned anniversary trip. We asked Zoe if she would like to go to Emily's House for respite after her discharge from hospital last Monday or if she would prefer to go home. Zoe immediately picked Emily's House. Once we reassured her that the school bus would pick her up every day, Zoe was so excited she could not wait for us to leave!
Ailsa did really well too. We had some special people come in to spoil her a bit and she had a fun week. I think she missed Zoe more than she missed us!