At long last, Shrek, Jr. the Musical arrived. After four months of biweekly practices and four nights of four-hour rehearsals last week, Mr. Andi, Nathan, my mother-in-law, and I hauled our cookies to the Mayberry Civic Center for the production. The cast was large and ranged in age from 4th grade through 8th grade.
Sarah Kate played the role of the bishop who is charged with marrying Fiona and Lord Farquaad – if you’ve ever seen the original Shrek movie or the stage musical, you know the wedding scene is the climactic moment near the end (read: we waited a really long time for her to appear). While we waited, I tried to enjoy the show (and it was surprisingly good, given that it was put on by a bunch of kids), but instead I kept seeing how much movement there was on stage – not just during the musical numbers, but in most every scene.
In short, I saw a lot of stuff Sarah Kate couldn’t do – at least not well.
When her scene finally arrived, she strolled out with her cane (which wasn’t a problem per se, but did frustrate me a little because no one had told me she’d be using it – had I known, she’d have had one that looked more bishop-y, or I’d at least have decorated hers to match her bishop outfit), spoke her lines flawlessly, then joined the rest of the cast for the rest of the scene.
I don’t think it bothered Sarah Kate at all that she wasn’t on stage more, other than the practical matter of having to wear the robe and hat for over three hours each performance, and it didn’t bother me that she had a small part. Oodles of kids didn’t have lines, and as I told her when she first auditioned, There are no small parts, just small actors. In some ways, the role of the bishop was perfect for her.
I’ve never done school field trips with Sarah Kate. I know there are moms who love them, but I never have. I’ve been able to use Nathan as an excuse to avoid a lot of them (No Siblings Allowed!), I’ve pulled the I-get-sick-on-charter-buses card (true) and among friends I joke around about how I only like my kids and a few others, not 30 or more in a group. There’s at least a little truth in all of those excuses.
But the real reason I don’t do field trips is because they’re too painful.
We hit the ground running with both cerebral palsy and Down syndrome – I’ve spent countless hours researching, in therapy offices, working on speech and PT homework, and so on. I long ago accepted that both of my children will struggle in ways that most children don’t, and I understand that the world is not built for either of them. I’ve said it here before: our philosophy has always been that we should prepare them for the world as it is, not as we wish it to be, and we will push them as far as they want to go in whatever activities they want to try.
But that doesn’t mean I always enjoy these activities. It’s easy to live our lives as a regular family and not think about CP or Down syndrome when we’re at home, or visiting family, or having dinner out with friends. But when I see Sarah Kate in a group of a few dozen kids in a musical, or on a field trip with her class, or out on the softball field, I can’t look away from CP. It’s in my face, and along with it come the usual suspects… the what ifs.
So the bishop had a funky cane! I think it adds character 🙂
I like the cane, I just hate that it’s purple next to the maroon and gold! 🙂
The cane is very bishop-y.
I still wish I’d had a heads up – we’d have made a super-cool super-tall staff so she’d look more pope-y, LOL!
Why always so negative? Nearly every one of your positive posts about your children is offset with something negative about them. I hope they never read your blog because if I was your child I would feel bad. I’m not saying everything always has to be sunshine and rainbows, but you don’t need to take them down a notch every time they do something great. There doesn’t always have to be a “They accomplished this….BUT….” Your children are AWESOME!!
Perhaps I should turn the question around and ask why you continue to read and comment if you feel so strongly that I make poor decisions with regard to my children? Much like your previous comments regarding Nathan’s booster seat, what you see or read on this blog is but a tiny sliver of our lives. Sarah Kate knows how proud I am of her, not simply because I’ve said it over and over again, but because she can see the pride in my smile and the light in my eyes when I speak to her. I am not afraid for her to read what I have written – she subscribes to the blog by email, as a matter of fact, and just like Mr. Andi, she likes to read what her mother has written because it provides a window into my thoughts that she might not have otherwise.
But back to your question… People with a variety of backgrounds, male and female, mothers and the childless, those with disabilities and those without, read this blog and others in the same niche, parenting special needs. Those of us who blog in this niche are frequently attacked for being too negative or too positive or too sensitive to certain issues, or not passionate enough about those same issues. Despite the criticism, we press on because of the long list of people who contact us to say “thank you” for putting their thoughts into words, for showing them that they aren’t alone, and for providing a window into possibilities for their own children. Once upon a time, I wrote more here about “issues” but eventually I pulled back on those topics – in part because it made me tired to write about them, and in part because I knew many of my readers didn’t enjoy those posts. Now I write about life as I know it and post photos of that life and still someone doesn’t like it. At the end of the day, I have to write for myself and other like-minded people, because that’s the truest writing there is, or stop.
If my blog isn’t your cup of tea, it’s okay. It won’t hurt my feelings for you to move on to someone else’s that’s more to your liking.
I have to agree with Mary….Sorry, but it is how you come across on here.
Wow! What an amazing coincidence! A second commenter who agrees with Mary who just happens to be posting from the same IP address!
(Yes, your IP address is visible to me on the back end, even though it isn’t publicly viewable in the comment.)
My daughter was here with me today, and I had her read a number of your posts, so that was her reply. Don’t worry, I can now tell that you are very sensitive to any concerns or criticism, so I will only repond when I have something encouraging to say to Sarah Kate, since she reads here.
Sarah Kate: I think you are an amazing and brave! You’re not afraid to try something new, are you? I enjoy reading about all of your accomplishments. Your Shrek play costume was great! What are you going to try out for next??!!
Andi
I have never commented before
Thank you so much for writing your post honestly
Today during the whole duration of my son’s first school show (he was 3 and has cp) i was in tears
I had not expected it, and writing your post, it makes so much sense
We both are great moms: we encourage out kids’ participation in “normal life”. It doesnt mean that its not hard for us
Ooh the what ifs…
Absolutely, S. Watching our children with their peers is a both/and, not an either/or, proposition: we don’t have to EITHER be happy and proud of them OR sad about what they will miss. It’s okay for us to BOTH be happy and proud of them AND sad about the what ifs. It’s not an emotion that’s limited to the special needs world, either. To use a swimming analogy, Ryan Lochte’s mom can be busting at the seams with pride at how great a swimmer he is while still wishing he’d gotten the gold that Michael Phelps won instead of the silver. 🙂
Well said.
I do read my mom’s blog and what she writes about me not being like everyone else is what I go through every day of my life. Sometimes I cry, but I am different in a way that makes me equal to all the other 6 billion people on this planet. There is nothing wrong with what my mom writes, as long as it comes from her heart.
Sarah Kate, you are a smart and bright light in this world, and seem very mature for your age! I know your parents are SO proud of you. “Finish Strong, Never Stop!” 🙂
Edit that to say: I think you are an amazing and brave girl!
Sarah Kate subscribes by email. She doesn’t see the comments.
Would you please show her what I wrote? You can delete the earlier conversation.
THanks for this post. I am going thru something similar with my child who has Ds. He is playing baseball and up until this year he has always been fine because it’s been really casual and non-competitive. This year is more “real” baseball and as I watch him and his twin )who does not have Ds) and the other kids on the team it makes me very aware of the Down syndrome and the delay that he has. I feel like the gap between he and his peers is getting larger as he gets older and it is harder on me than it is on him. 🙂
Do you mind me asking how old your son is, and at what age he started playing? Nathan loves to hit off the tee in the backyard (thanks to several seasons of watching Sissy play softball!) He is old enough to play tee ball this fall so we are considering signing him up.
But to your original comment, it can be tough to see that gap, especially when it’s widening to the point where you know your child will eventually be left behind. In many ways, special needs parenting is just a more intense version of typical parenting, but this is one area that I believe is unique to our experience.
He is 9 years old now. He started playing t-ball in kindergarten. He did one year of t-ball, two years of rookies (coach pitch) and this year is minors (kid pitch). Kyler enjoys it. I would definitely sign him up for t-ball. T-ball and rookies (at leas here) is pretty low key and just fun for the kids. Now that it is more competitive the difference in Kyler versus the other kids is much more evident.
Thanks so much for the info, Krista! I’m cautiously optimistic about tee ball. 🙂
I don’t read your blog often, however when I do, I like that you don’t sugar coat or pull the ” poor me” card . I interpret your blog as “that’s the way it is”. I feel like you are just keeping it real. You know what you know, that’s all you can know….ya know 🙂 I can only imagine what it is like to walk in your shoes. Thanks for being honest!
Try not to think about it as a comparison. Sara Kate may use a cruch but she can do many things. The gap is hard and it is hard when we become aware of it. Luckly I would be willing to talk to you guys if she wants too,
I love how you express both the joys and challenges of raising children in a world that isn’t quite built for them. My son, 10 1/2, has cerebral palsy, and while he is an amazing kid, there are certain frustrations and sorrow at trying to help him find his way in a society that sees the disability before the kid and in a physical world that provides barriers rather than accommodations. I really appreciate bloggers like you who don’t sugarcoat those frustrations. I hate that some people expect parents of kids with disabilities to be positive all the time, or only find the joy in situations. Somehow if we express frustration or sadness with what we and our children face, it gets translated into us not loving our children enough, or not focusing on their accomplishments. Thank you for being a positive voice out there for parents who understand that being frustrated with a situation, or society, or the challenges your children face does not have anything to do with your feelings for your children … And thank you for showing such great love for and pride in your children.
You’re very welcome, Tara. It does seem that the world sees us and our children in a very black or white way. Either we/they are to be pitied or we/they are to be put on a pedestal as inspiration. What I’ve always tried to do here is show that we are mostly just like everyone else.
For the record, I love your blog and I think more than anything what comes through in your writing is your love of your children. All I hear in this post is you love your children so much that it is hard for you to see them struggle to do what others do easily. I think all parents can relate to that. That does not negate in any way your pride of them. It is obvious that you are proud (and definitely should be proud) of your beautiful children.