Cherish Words is not about my daughter, it’s about me.  However, I’ve come to realize that a big part of who I am is “Mother”.  So, today’s post IS about my daughter (aka “the Bean”).

For my readers who aren’t up on the Bean’s short history, let me sum up (yes, this is a reference to The Princess Bride). 

She was born 5 weeks early (and very tiny) via C-section because she wasn’t growing properly in the womb.  Upon investigation, the doctors discovered that she has a partial trisomy of her 22nd chromosome.  In layman’s terms, this means that she has a third copy of a small piece of her 22nd chromosome that doesn’t belong – you normally have two copies.  The condition is so rare that they couldn’t really tell us much about it when we met with the geneticist – they expected she’d have some delays, but had no way of predicting the severity. 

Fast forward two years, and we’ve discovered some of how this is playing out for the Bean.  She is almost two and is not crawling, can just barely stand with help, and is certainly not walking.  She has a few words, though most other people don’t recognize them as words without translation.  She’s been going to a physical therapist twice a week to work on gross motor skills, oral-motor/speech therapy once a week to work on feeding, mouth manipulation and speech, and we have a Special Needs teacher from Easter Seals visiting once a week to work on her general cognitive and fine motor skills. 

The reason this is all coming up for me right now is that we’re in the middle of the Bean’s semi-annual evaluation with the government organization that pays for all this therapy (an organization for which I am extremely grateful).  The goal of the evaluation is to see how far she has come and also to figure out where she might need additional help.  But it also brings into sharp focus what other kids her age are able to do that she is not.  Once in a while I get sad about it – it’s a lot of work going to all those therapy sessions and trying to keep up with the “homework”.  Other kids that we play with are going to music classes or swimming lessons, but we go to therapy – there’s just not room in our schedule for those other fun things.   I occasionally feel sorry for myself because she’s not able to do things for herself that other kids her age can, putting a greater burden on me. 

On the flip side, I find that the Bean’s developmental delays make every new achievement that much more exciting.  It’s not a given that she would automatically to learn to crawl – we have to work on it every day.  So when she suddenly started turning in circles on her belly a couple of weeks ago, it was a really big deal!  Some of my mommy friends admitted they were dreading the moment when their babies became mobile.  I was beyond excited when the Bean figured out she could move around by scooting on her bum.  By the time she IS walking, she’ll be old enough to understand a lot more about what is dangerous than she would have been if she’d been walking at 10 months like I was.

I got to have a tiny little cuddle-bug a lot longer than most – in fact, two years later, she still LOVES to snuggle when most kids her age are too busy.  We’ve been able to save on baby clothes – she’s been able to wear some of the same clothes for almost a year now, although some of her pants got too short.  And even though I’m still carrying her around everywhere, she’s still pretty small, so that’s not as hard as it could be.  And I’m learning so much about the mechanics of motion and speech – it’s fascinating.  These are just a few examples, and they aren’t super profound, but they are little things that help me to realize that every child comes with pros and cons (so to speak).  

Our Bean’s strengths are numerous.  She is extremely social – wants to talk to everyone who passes by, even if they’re in their car.  She is usually pretty easy-going and happy.  She’s determined – if she wants to do something, she’ll keep trying (most of the time) without getting too frustrated.  Of course, she is almost two, so sometimes she asserts her independence and refuses to do things.  But that is also a cause for celebration in our house because it means she’s reached that developmental milestone, and pretty much right on target.  Is it weird to be thrilled (mostly) to enter the “terrible twos” stage?  When the Bean has a temper tantrum, I actually think it’s hilarious.

She’s also pretty darn perceptive – she notices things that I totally miss, like the tweet of a “brr” (bird).  She uses the words she can say with gusto, and is picking up more words all the time.  She’s gentle with our pets (with the odd reminder), doesn’t mind sharing her toys, LOVES to read and be read to, and seems to be driven to figure out how things work.  She is already pretty passionate about music – Twinkle, Twinkle Little Star is her favourite song, and she asks for it 50 times a day.  She dances at the mere mention of the word.  There doesn’t need to be any music to go with the dancing, but she’ll take the music if it’s offered. 

Okay, I could write a book on this stuff.  It’s a big part of my life, and it doesn’t surprise me that this is my longest post to date.  Perhaps I need to start a second blog.  But in the meantime, I guess my point is this:  My daughter has special needs.  I always thought that I wouldn’t be able to handle the added stress of a child with special needs.  But what I’m learning is that every child has special needs – they may be different in magnitude or in perceived importance in our society, but every child has their strengths and weaknesses. 

So I am grateful for my amazing daughter.  Sure, I’d love it if she didn’t need all the extra help, but she does, so we give it to her.   I also know that we got off lucky.  Of the very few documented cases of Trisomy 22, others have much more severe problems than the Bean does.  In fact, there are so many more serious genetic conditions out there, and all we have to deal with is some extra therapy.   

I am learning so much about myself in this process.  I’m learning that I don’t have as much patience as I thought I would (or think I should), but also that I can deal with so much more than I thought I had the capacity for.   I’m learning that true success is not actually measured by comparison with others, but by comparison with oneself.  I’m learning that being happy and friendly is so much more important than keeping up with everyone else.  I’m learning to trust my own intuition, my husband’s opinions, and the therapists and medical personnel that have been assigned to help us work through all of this.  Oh, and I’m learning that a smile from my daughter can make just about anyone’s day…and she doles them out like candy at Halloween.

On the Kindle: The Secret Life of Bees

I just finished reading this beautiful book.  It’s about mothers and daughters and how complicated their relationships are, even when their time together is ended early.  It’s about finding a mother’s love within yourself, even if you didn’t get it from your own mother.  It’s about racism and acceptance, the lessons we can learn from bees, the colour-blindness of love.  It’s a coming-of-age tale about a young Southern girl who escapes her abusive father and finds herself, and her mother, along the way.   I suppose women might get more out of this book than men will.  But to my male readers – if you have a daughter or a sister or a wife, this might be a good emotional education for you as well.