The book is "The Memory Keepers Daughter". I have read it before, but it has been a long time so I tackled it again. I had even forgotten what it was about until I started reading. Long story short a woman has twins (unexpectedly, this takes place in the early 60's) they didn't make it to the hospital. Doctor/husband delivers babies in his clinic. Mother is drugged and out. First baby born, healthy boy. Nurse takes him. A second baby starts coming, Dr/dad delivers and he sees the child has Down Syndrome. In a split second decision he tells the nurse to take the baby to an institution, WITHOUT TELLING the mother (I know, right?!) . Nurse won't do it and raises the baby herself. The Dr/dad had a sister who had Down's and died at a young age. He was trying to "save his wife the heartbreak". GIGANTIC secret ruins the rest of his life and marriage. He realized this was a mistake not too far in, but he thought it was too late to turn back and ruined everything anyway. Terrible terrible terrible and heartbreaking.
The reason I bring this up, besides the fact that (thank GOD) we have come a long way in 40 years. As I was reading last page today I was a bit overcome when the brother is meeting his sister and finally getting to know her. He was observing people talking to her and he became uncomfortable because the people she was talking to were uncomfortable with HER. "he realized, he would be torn like this, aware of Phoebe's awkwardness, the difficulties she encountered simply by being different in the world, and yet propelled beyond all this by her direct and guileless love."
I found this very compelling. I will admit there are times when I see Daniel talking to someone and I think "oh no". Especially if I think they will be uncomfortable with him. I don't know why that is the first thing that pops into my head, but sometimes it is. It upsets me, because why should that be? We want him interacting, right? I am not afraid of what he will say, but how people will react to him. I will watch him from a far sometimes in these situations and looking for the other persons reaction. It is being stuck in that moment, watching without hearing. A bit unsure. Waiting. "yet propelled beyond all this by her direct and guileless love. " That quote completely summed it up for me. I'm in love with that.
Because of this, I tend to judge people on their reactions to Daniel and by his reactions to them. He knows who he likes, that is for sure. He doesn't have that filter to pretend that he likes someone. Last week we were invited to a local fitness club on a half day of school for an afternoon of shooting baskets and swimming with some friends. We accepted. We have become friends with this family through my 9 year old Zachary who plays soccer, basketball and baseball with their 9 year old. We have spent many many hours together on the sidelines. But haven't really connected until recently. I thought it would be fun for Zachary to play with his friend, fun for me to talk to the parents, and fun for Daniel because of swimming. PLUS it's a new place, and I like to introduce new places to him.
It was a great afternoon. Everything went well. Daniel was a bit scared of all of the tv's around the fitness center showing basketball games. (fear that that awful logo that may appear!) Our hosts are faithful followers of my blog and knew about this fear. They went out of their way to make him comfortable with out enabling him (hi mama!). It is such a blessing to find people that are completely accepting of our whole family. Everyone SHOULD be, but they aren't. I have many "old" friends who I don't really talk to much anymore, because I just never felt that they entirely accepted Daniel for who he is. They may say the right things, but you can feel the awkwardness. You know. Daniel knows. I can see it in his reactions to people. He lights up when people are accepting. If they aren't, he immediately disengages. I am so completely BLESSED to have MANY families here in our small city who I know we will continue to be friends with, for a long long time. Those connections are so important so we don't feel isolated. Having a child with special needs can be very isolating. I am not very easy to get to know (so I've been told) writing this blog let's people in much more safely than face to face. But there are people who we are very close to. When Daniel talks of the Sandborn's coming over he does so with great enthusiasm as well as many other families right here in our neighborhood. And based on his reaction telling his dad about our day with the Spicers', I think, if they'll have us, they can be added to that list.
3 comments:
Great post. Michelle!
I love that quote that you listed. That really sums up how I feel about Nigel's interactions with people - those who don't know him or don't 'get' him. And it makes me all the more appreciative of those who do.
Michelle - I am just now reading your latest blog, and am in tears (not the first time). We are so completely blessed to have YOU and YOUR FAMILY in our life. I love Daniel's spirit, and credit all of you for that. You are an amazing mom, Todd is an amazing dad, and Zach is truly an extraordinary brother. Together - you all love, support, encourage and embrace Daniel every single moment of every single day (even when its not easy). It is a privilege to be among those that Daniel enjoys spending time with. We look forward to the next time we can all spend time together.
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