Memory

My baby niece was born Easter Monday. Her beautiful face looks just like our babies, like her older cousins and her siblings and her aunties and uncles and parents when we were all babies. My very cells recognize her. The moment I saw her my heart broke open again to eat her up. My ovaries leapt. I want another one. I want her. I want one like her.

Our memories continually rewrite themselves. As we access them and relive them and subtly revise them, they go back in altered form to be reaccessed and altered over and over again until they fit. Fit what?

I want to alter the moment I first saw A's face. She did not look like the babies in our family. Something was wrong and I knew it immediately.

I want to tell the story again over and over until it fits. The view from here is full of love and joy and acceptance. Not only do I recognize her now, I see that she recognizes me. She sees everything, my full of surprises miracle and the drawer out of inner things.

I want to rewrite that moment to imbue it with all I can see from here 5 years later. I want that moment to be like the moment I saw my son, my niece and all of the others. I want to erase the disappointment, the sadness, the despair and above all the fear which still leaves it's almost invisible trail over mine.

I met a 3 month old baby recently. She was at the playgroup we attend with other families that thrive and sometimes struggle with an extra chromosome. She was beautiful. She was perfect. My heart broke open for her too. I can see from here how she is exactly who she needs to be, with her littleness and her wonderfully alert expression surprising her parents and brother continually just like our mysterious surprise child.

When I tell A about her birth, how will the story go? I was scared? I didn't know what to do, how to go on? How to start over? Will I tell her I had to fight to feed her for nearly 2 months with a fight so intense I forgot about Down Syndrome? Like Pi fighting the tiger in his life boat. Will I tell her how quickly she came and how the birth labour paled in comparison to the labour of the heart that followed? Will I tell her that I had grieved for another baby that didn't make it and that there was no way I was going to let doctors probe her in utero to give me the choice of termination? Will I say any of this or will I let her shining presence be enough.

This child doesn't need a story. This child is here and fully present containing everything, reflecting everything, releasing everything and holding nothing. It is enough to just be with her and let the magic work.

So the magic slowly edits that moment, polishing away the edges of fear and sadness to a smooth shine reflecting the gratitude for every second we've got.

Mother's Day Tea Party

My darling sweetie climbs the steps out of the preschool in her step and close way. She is holding a coffee filter flower and wearing our favourite pink knit dress with her sparkly shoes from her big girl friend Kara. It's her turn to escort me into the tea party. It takes her longer than the other kids but she is third in line so the excitement is still building and no one is impatient yet. She leads me carefully to our table and takes my seat while offering me hers. She is too excited to speak and I can't stop speaking and asking her questions. There is a present and place setting for each mom. We are all thrilled of course. The kids get up and do two songs with actions. She places herself front and centre, joining in and looking at her class mates for clues. She is among them and apart. The bond between some of the other kids is not there for her but everyone is friendly and her main connection is to the teachers. Now in this moment, she and her mom are dressed up for a tea party and there are strawberries and cupcakes and songs. What else could possibly matter?

Executive (mal)function, the new buzzword around here

The digital signage behind the bank tellers wind through their promotional material. I recognize one of the families in the photos. Not from this neighbourhood but from the daycare at the university where I work. It's funny to see the little boy when he was a baby. He is so recognizable with his distinct and intense features. My mind has plenty of time to lose itself along the path of this marketing campaign. I'm standing at the counter waiting as the very patient teller counts through the nine separate deposits I've brought for A's preschool. The preschool is run by parents and I am the banker. This is probably the last deposit I will do in this role and certainly the last big one. This feels like a milestone in the road to kindergarten or K-day. I've done this job for this pre-school year and I did it when her brother attended as well. On the first Saturday of every month, I bring the tuition cheques and any fundraising monies we have earned to the neighbourhood branch of our credit union and wait while everything is counted. If I had a tape machine, I wouldn't have to wait as they would just trust the tape but I don't and I don't mind the wait today as I'm on my own and there's no need to use all the eyes in the back of my head to monitor where my little peeps are. The evening before this trip involves some long tedious counting and writing out of deposit items. Nothing hard but it requires concentration on something and some quiet which are rare commodities.

I've used this tediousness as an example to explain to my son that some things we do are important but not that interesting or engaging. If I don't do this, the teachers won't be paid so I have to focus and do my best even though it's not interesting or fun. He has a challenge with executive function. That is the new way to say, he's disorganized, forgetful and loses everything despite his brilliance. I am using every tool I know of to help teach him to work through these challenges but I must say I'm exhausted. It turns out I may also have executive function challenges. I know how to get things done but I have had to learn how to cope, to outsmart myself into being able to function in many high pressure situations. I suppose that should put me in a good position to help someone else but parenthood is definitely stretching me to the limit. I'm reading about this challenge and like the hypochondriac that I am, I see the patterns in all of us. I may be the only one in the house with any executive function at all which may explain why I am 'so tired like a hell' as my grandma used to say. I'm sure I'll be writing about this more as my awareness increases. Maybe I'll even have some tips to share. In the meantime, greetings from my chaos to yours.

The Party

Five little girls grip the side of the crib with fierce glee. Their faces shine with naughty delight. This really is five little monkeys jumping on the bed. I grab the camera and get a few blurred shots. I'm trying to capture something, maybe proof that we are having a good time. There's no doubt about it. I'm the last to be convinced. I have been worried about this birthday party for weeks. Who should we invite? How many? Too many will overwhelm her and too few is too vulnerable to no-shows. I don't like relying on plan A. I need B,C and sometimes D. What will we do? Free for all or structured entertainment? Will anyone come? Does she have any friends? Will she have a good time? Will I? Who is this about?

This is the first birthday party for her that is somewhat directed by what she wants. Her younger birthdays were essentially celebrations with our adult friends and their kids; sharing milestones and toasting the survival of each early year. This year is different. Thankfully we are beyond survival. Now, these are her choices, her playmates from pre-school, daycare and the playground. I will barely know the parents and they won't know each other at all. They will see the best version of our mess. They will know we are sort of weirdos too with art and odd furniture and music and … why do I want to be so normal now when I have never cared before? Who is this about?

I sit in cake-making exhaustion the morning of the party, trying to hear God. Sometimes I can. I tried to quiet my mind and to escape the drift that creeps into the main stage so quickly. As my worries parade on through, I slowly notice an image of Lego treasure. I see gold plastic treasure chests and coins superimposed on the other thoughts. What the….? there is a moment of confusion and then I recognize the gentle teasing humour of a message from God. I'm chasing the wrong gold, fools gold, toy gold, fun, even useful, but ultimately the wrong focus. I suddenly know, deeply know, that only a few things matter right now and my current worries about the state of the house and trying to pass for normal, whatever that means, don't rank at all.

Now I stand watching my dear girl with her pals, having the best time. I see that she is not like them but she is also not that different. They all play together and all a little apart from each other. They wander around and find things they are interested in. My planned craft activity captures some interest for a time and then they drift off distracted by the pink doll palace that has shown up for birthday week. The kids crowd around the cupcake mountain when the time comes and my girl 'A' is front and centre. She knows this is her moment. She can't muster up enough wind to blow out the candles but she gets help from her brother and her friends. Yes, friends. The ensuing cake frenzy is as varied as the little party people. One licks off all the pink icing and leaves the cake before asking for more. Another eats around and around until reaching one last bite. My 'A' face plants right into the cake and comes up for air momentarily before diving again. I talk to parents and I like them all. The tenure track professor likes the tunes we are playing in the background. Parents tell us tales of their kids' accounts of 'A'. Tales of 'A' rescuing one from a fall. Tales of 'A' bossing another one around. She is a force to be reckoned with and she's making her way somehow.

I find that all that I fear, besides not having loads of food, is what everyone fears. Isolation. I am beating it back for my daughter and for myself. As it turns out, she is the least likely person to need help with that. Really, I should just get out of her way.

And so we celebrate and I do my best to let the worry rest. There will be more parties and kindergarten is looming but right now we celebrate 5 years of the life altering presence of Miss A.

Look who is 5!

5 things I love about my 5 year old.

1. Her learning disability mysteriously disappears when she hears something I don't want her to learn. She picks up all her brother's toilet humour and goofy gags in one repetition. Her favourite word is 4 letters long, begins with F and ends with T. She uses it often as it gets a laugh with the big kids.

2. She loves to sing. She makes up songs on our long commute. I usually try to use the time to play something educational or brain stimulating like classical music but lately she prefers to stop all the input and crank out some output. Some of her ditties are completely unintelligible but others have a beat and a tune and themes like fireworks, rainbows and ice cream. I feel the hits coming on.

3. She loves school ( and day care and play groups). She is the kid that either doesn't look back or looks at me in surprise when I linger and says dismissively, "Bye Mom!" waving me off like a lost puppy.

4. She has strong opinions. She chooses her clothes, accessories, her favourite foods, her books, her music, her toys. She would like to rule the world and is practicing every minute. As a younger sister, a lot of her time is accounted for being towed along to her big brother's activities. She is standing up for her space more and more and although frankly there are many moments where I don't have time for her to choose to go the other way, I am thrilled that she is taking a stubborn stand and being demanding. It's a streak that with time, will help her.

5. She is the boss. Her confidence and demeanour have come in like a strange wind of blessing. None of us have such certainty that the world was made to have us in it. I'm sure this will be tested as she gets older by those who can't see who she really is, but by then it will have rubbed off on me and I'll be sure to remind everyone who's boss.

The Pool

I stare at my ID card on the counter. The nice community centre cashier lady has not taken it to swipe another swim credit from my account. She has swiped my daughter's card and given us both wristbands the solid colour of the day indicating a child's entrance fee. I know from experience, I should be getting a patterned band. 

"Are you going to take my card?" I ask toward her back as she has moved on to another task. She turns surprised. "Oh no, you get in free as her attendant." For a split second, I don't know what she is talking about. Then I respond, "But I am her Mom and I'm just taking my daughter swimming like anyone else would at this age. She's only four." "Well," she instructs almost sternly but protectively too, "You shouldn't ever have to pay as the attendant of someone with a disability whether you're her Mom or not. You can alway get in free with her." 

So here it is. I am one of them. When my little duck 'A' was born, my main exposure to people with disabilities was from seeing them at community centres and pools with their attendants, hired or sometimes aging mothers whose little ducks would never leave the nest. My fearful mind immediately cast me into that role, my own body weakened from years of grief and neglect, supporting a child who would never swim or run or be free of needing me. 

I laugh. That fearful vision seems as far away from reality now as it was looming and oppressive then. My somewhat delayed but assertive pre-schooler is tugging me toward the change rooms eager to get on with her water adventure. I too, look forward to the joy of her clinging to me with squeals of delight as she navigates her favourite place. I don't have time to argue with this lady about whether I deserve a discount or not. I thank her and move on.

The next week, the same lady charged me full price. I didn't argue then either. The boss of me was tugging again, pulling us both forward into a future of moments of delight and sometimes uncertainty but always full of love.

I'm 3!

[Mom's editorial]

A sunny day in the park, a trip to casa gelato, a long nap, pizza, cake, homemade frozen yogurt, presents topped by a bath. And although I'm sad the teachers had to go on strike, I am very glad my big bro was here for all the fun.

Happy Birthday to me!

[A's real thoughts]

Took mom forever to get me out of the crib today. Does she not know what today is? Then she lets me watch 'signing time' which is great but I was starving. Nice oatmeal but someone said ice cream and that sort of wrecked everything else. We drive around forever and play in a park we've never been to or maybe it was just that we never see the sun so it all looked different. I was quite insulted when I was plunked in the stroller. Seriously, I can walk, except when I can't. There was nowhere to pee so I had to resort to the cloth diaper and of course when mom tried to put me on a baby change table, I lost it. I can stand thank you. Finally we get to this ice cream place and the day starts to deliver.....zzzzzzzzzzzzz