The Birth Story

I was moved to write A's birth story in honour of her 7th birthday but also because I didn’t like the way it went. I didn’t and still don’t like that horrible moment when I first knew she had an extra chromosome. I wanted the bigger story written down for her and for other parents in similar situations. I wanted to write the story again and again until it contained all the possibility of her light.

7 years is a long time. I like the apocryphal idea that our cells replace themselves every 7 years and therefore we are new people. Who have I shed since that crazy time when she was born? Who has replaced her? A lot of heavy stuff came off in the first year. My despair when I first saw her face and the darkness of not being sure if I could love my child; all of this had to go of course but it needed its time to be there in the newness of doubt and shame and circumstance.

It took a long time to get pregnant. I had had a miscarriage the year before and I felt the fragile miracle of life I was carrying. There were signs of something being different but I was oblivious. There was a scare that her heart had a deformity and inconveniently urgent appointments with specialists and geneticists. No one ever said Down Syndrome and at one point I asked about it because I had not done any testing. I told God I was open to anything but I really didn’t think anything but a perfect, amazing, healthy ‘typical’ child would be on its way. Another ultrasound for birth position alarmed me as the technician stared and stared and asked me if my first child was ‘normal’. This was super upsetting but still, I didn’t clue in.

My contractions started after a long day of walking and pushing a heavy 4 year old in a heavy stroller up and down the hills of our neighbourhood going from birthday party to Employment Insurance office to sort out my paperwork for my maternity leave. It was 10 days before my due date and I had just wrapped up work. Big brother was 10 days late so I was sure I had loads of time. Here it was all starting and I didn’t even have a diaper in the house. That night was wakeful with the contractions continuing occasionally. Not terrible but not something you could sleep through. The next day, a Friday morning, I had an interview with a doula. She arrived and we chatted briefly and I half-jokingly said, you seem nice, what are you doing now? And so we went with it. Her presence was reassuring and needed as I really had no clue how to tell when things were really moving. My first child took an epically long 70 plus hours and I had no perspective. 

Things got intense pretty quickly. By noon I had arranged childcare for my son and had started to get a few things in a bag to go to the hospital. My son was a planned home birth but we needed help so we went to the hospital. This time, I was ready to go the hospital so that I wouldn’t have to have that dreaded car ride while in full-on labour. I was counting on the doula and mid-wives to make the call. I walked around and leaned on counters for the intense ones. One of the midwives was an amazing cook so she fed us. My team came and went. T was on alert as was my sister and my good friend. Time was moving so slowly. It was turning inside out, just like me. I breathed when I remembered to. The midwives checked in a few times. The doula put pressure on various parts of my back and legs to help with the intensity. The team gathered. The midwife, the trainee, the assistant, my doula. Someone said, if we're going to the hospital we should be going now. That came in from very far away. It took hours to process it. I'm not getting in a car now I thought and it turns out I said it aloud. Great! said the midwife ready for anything. Tell your husband to buy a shower curtain and get home fast, your little one is coming. The intensity really spiralled up at that point and I moved around from bed to kitchen to bathroom to living room  in a circuit of pain and leaning on stuff. Eventually I circled to the plastic covered bed and writhed around realizing we were way past a chance for an epidural. I was still incredulous that (s)he could be coming so fast given my previous experience yet each breath was a lifetime and each cycle of pain interminable. The midwives tell you that each contraction is one that you never have to have again. I couldn’t help thinking that some were more effective than others and therefore there could be wasted contractions that had to be done over. Why my brain needed to fight that determinism at that moment is a mystery. 

The pain shifted to the pushing pain. Not easy but different, more linear and somehow easier to convince myself I had more control now. Ha! As if we can control any of the mystery of birth or death. As if we can do anything but ride the experience and hope for the best. T was there. Faces, pain, wanting my son close but glad he couldn’t hear the certainly terrifying noises mommy was making. More pushing and a feeling of being completely split open and still more and still more and then way way down a long tunnel, blessed relief.  T caught her. I first saw a little bum and a vagina. A girl! I could burst I was so happy. I turned her toward me and as I saw her face, I sunk into a dreadful certainty that she had Down Syndrome. I said it aloud and the midwives quickly checked her heart and lungs. All was well. They checked for other markers but could not conclude without a blood test. They kindly and wisely advised that we get the test in a few days but first just get to know her. Again, I was hearing all this from very far away. I was projecting into a future of great sadness for the person I had brought into the world. A person who would never grow up and be independent and fulfill her dreams. I was also asking God what I had done wrong. I was old to be giving birth by biological standards if not societal standards so it had to be all my fault, my terrible responsibility that I would carry for the rest of my life. What had I done to my son? To my family? To this poor child who hadn’t asked to be born. 

I was drowning. I was going under in the sea of disability. My husband held his sadness in the stoic Nordic way and held her close and just said ‘She is ours’ even as she pulled off his glasses and tossed them in an almost comical foreshadowing of things to come. My son loved her right away after having railed against the idea of a sibling for months. They seemed to be handling this crazy disaster but I needed a lifeline. 

The first lifeline was teaching her to nurse. We had a lactation consultant who emphasized that nursing would promote her immune system and strengthen her jaw and tongue so she’d have clearer speech. A project. An important project. I grabbed on to it for dear life. There was no time to worry about the distant future when I had to focus on ensuring I was doing the best thing for her right now. She had low tone so she couldn’t latch and get the milk to come. I had to pump and feed her with droppers at first. Then there was a subproject of choosing the right type of bottle, one that would make her work that jaw. The cycle of pumping and feeding and cleaning the pump and starting over every 3 hours left me almost no time and no sleep. T held things together as best he could but soon he had to work and leave town for a project. That left me with a high needs baby in an intense situation and a preschooler on my own. Looking back on it now, I can’t believe how it all unfolded and how somehow, step by step, breath by exhausted  breath, we pushed through that time. I have faith, I pray, I talk to God. I am also a sort of high needs baby in faith. I whine and cry when things are way way harder than I can handle on my own. I’m a bit of a wimp, especially in the context of the women who went before me. I cried out, a lot. AND I was surrounded by support. 

The second lifeline was help and community. Luckily I had the strong urge to ask my mother to come. We were not as close as I would have liked but late in my pregnancy there was a moment when I recognized I needed her support. I cast off my independent stance and asked her to please come. She did. It worked out that she arrived about 10 days after the birth. I had also decided to forego a 2nd baby shower for a meal train, guessing that things would be intense with a newborn and a toddler. I had no clue how intense it would be but this was another lifeline. Meals arrived and people stayed to drip milk into little A while I gave her brother some much needed attention. It was in this period that I started telling him his birth story over and over to ground him and give him a sense of the momentous time we were in and how he was an important part of his little sister’s story already as she was of his. I still thank God for all the people who did what they could, many close and some who barely knew us but wanted to help. There was my close friend who hauled her friend over to clean my house (including the gross stuff) and serve me a hot chicken dinner. She also used her skill in homeopathy to help. There was my great friend who arranged the meal train and had a quilt made for the baby and brought food. My sister who came as often as she could to feed us and handle one of the kids so I could hang out with the other one. There were many other wonderful friends and neighbours who all brought food multiple times. And then there was my Mom who insisted on taking a few night shifts for me so I could get 4 hours of sleep in a row. There was the amazing fact that we had no health issues to deal with and only one hospital visit for the confirming blood test. There were my midwives and my doula who continued to check in through the nursing ‘project’ and beyond. There was their skill in using homeopathy to clear up an intense mastitis situation that can be common with pumping. There were midwifery and doula students who volunteered to come and help out as part of their course hours requirements. I did have to scramble on my own through some days but overall, I felt held up or propped up sometimes but up.

The third lifeline was Polly Marchenko. We succeeded at project nursing between the 6 and 7 week mark. It was amazing on so many  levels. The impossibility of it all, the joy of the bonding, the sudden assuredness of this little person claiming what was hers. The sheer practicality of input and output happening simultaneously instead of in awkward series felt like a miracle. So the three of us (myself and 2 kids) got on with the business of living. There was so much freedom now. I was merely dealing with the busyness of having 2 kids. It really felt like no problem at all as long I got enough to eat and a few hours of sleep.  We packed up and hit the road to join T at his work location and to explore a new town for a little while. I kept big brother occupied with gym drop-ins and walks to parks and we would all meet for dinner later at the house we stayed at. During rare quiet times, I researched Down Syndrome. I was tentative because as many a new mother to a child with a disability will tell you, the official literature is not too hopeful. There are loads of dire sounding technical terms and statistics which I understood but couldn’t bring myself to believe. Then I stumbled upon a blog about Polly Marchenko. Her mother, Gillian, a beautiful writer posted pictures and stories about their life as a family. I learned of Polly’s dramatic birth in the Ukraine where her family lived at the time and their subsequent move to Chicago. The particular exchange that birthed a new hope in me was a conversation between Gillian and Polly where G tells her she was afraid of her when she was born. Polly just cracks up like that is the craziest thing and of course from my vantage point now, it clearly is but in the moment of just peeking out of a hole of despair and fear that conversation was like a clear tone of truth from a friendly future. Polly inspired me to find other families and they all inspired me to start sharing our story too.  

The story isn’t done yet. The birth story isn’t even done yet. That birth started a process of peeling off layers of perception, emotion  and expectation which continues today for all of us. That birth was a difficult surprise but the subsequent joyful surprises continue. If you’re reading this and you have a baby or young child or a relative with an extra chromosome, I invite you to consider that maybe this unthinkable new reality you are living is a great and rare gift. Maybe you too are being birthed out of who you thought you were and what you thought mattered into a new clarity of what really does. 

Thoughts before opening the first report card ever

I am about to open my daughter's first report card ever. I am curious about the mix of feelings I have in this moment. There is a little rise of trepidation, left over I'm sure from my own childhood dread and excitement at seeing my own. There is detachment or something like it as part of me knows that it doesn't matter what is in there. I can already see so much progress since our late September start to the school year and school career. It is that progress that matters. But I do care what the teacher thinks. I do care what the teacher sees. I hope that my girl is seen for who she is and that the professionals can feel the vastness in there. I can. I have spent many hours by her side growing in awareness and perception of the big person inside that little body. My time with her has opened up some kind of receptor to seeing and feeling more of everyone. Can everyone else see her? I know some can and some can't. I reunited with a long lost pal when A was about 2 years old. That friend could feel her right away. My Mom and sisters and brothers could too. I have other friends who tried not to show it but saw only a disadvantage and a disability and felt only pity. I say this not to condemn them but with curiosity about who can see and why.

I want so much for her to be seen. I want that for all of us actually. My son too, myself, my partner, my siblings and their kids. I want that for the whole world. I want us all to have room for each other.

So when I open that card in a few minutes I wonder what will be important to me? Will it be the grades that cannot possibly measure who she is? Will it be the comments? If she's done well will I breath a sigh of relief and congratulate myself on a parenting job well done as I've been trained to do, as we all do with our measurement-based judgements? If she's done poorly, will I try to suppress my disappointment using the kind of self-talk I'm using right now as I write this? 

Will it be a sort of non-event that reflects only one teacher's perspective at one point in time? Interestingly, I spent the day at work writing up 'report cards' or performance reviews on my own team. I am just coming from the perspective of evaluating people with a measurement scale and comments. It's painful. It's hard. It's useful for the discussion that it fosters. That discussion is necessary. The measurement can be useful if it helps mark progress but it's so easy to get distracted by that and miss the context and content and growth.

I will take this as a first marker to be used to see how far we can go from here. Before I even open it, I know that her teacher and educational assistants are great and I believe they do 'get' her. That is so important and no matter what is in there, I know I am amazed at how far she has come since late Sept and I know we can work together to go further.

This Guy

In case you think the world doesn't revolve around the big brother let me reset your impression. I have had a few conversations with families whose oldest child has an extra chromosome or some other challenge and their youngest is 'typical'. I think we can all agree that 'typical' means everything and nothing but here I use it to mean someone with no cognitive delay. The parents often lament that their 'typical' child who happens to be the younger one, gets ripped off. They don't have as many activities focused on them. They get dragged around to the appointments and events which make up their disabled sibling's days.

I'm convinced it's a birth order thing. Most of my writing here is focused on my little girl because I have found value in reading the stories of others and in sharing our stories. I probably haven't expressed the fact that much of her life has consisted of being towed around to her big brother's events and activities.

I have many many stories about this guy. I adore him beyond imagining. The best thing I have ever written remains unpublished because it's about him and he has asked me not to post it as he is self-conscious enough to find it embarrassing. So I won't do it until I have his permission. It hurts though, it's a really good story.

He is a big, big light contained in a skinny freckled body which he does not always inhabit. He soars up to the heavens in excitement at new ideas. He crashes to earth and lower when disappointed, tired or frustrated. He needs time alone with his large imagination and we try to let him have that although it can be quite a challenge in days filled with school and soccer and capoeira and swimming and homework.

There are many days where I admit to myself that my 'typical' child has me more worried than my disabled child. Many days. Days where I remind and cajole and debate and do the 1, 2, 3 count and find the 100th lost item and then finally give myself a timeout before I lose it. Or worse, days when I do lose it. Days where I hear the echo of my late father's pathologies and try to remember that this is a different time and place and I am a different mom and history does not have to repeat itself, not while I am here to stand my ground and hold a big enough space for him.

There is one person who can ground him back to earth in an instant. There is one person who can bring back the brilliant, blinding light. His little sister (of course).

This guy is not getting ripped off. Neither is she.

K-Day

It's K-Day minus 1.

I have long pictured the moment she walks into that classroom, wondering whether I'm going to lose it or maybe after all the worry and planning and shifting and practicing that has lead up to that 15 seconds, it'll just feel matter of fact. I will want to let it all go but I will know that the worry is not over and may never be. If experience is any indication, she is likely to dive right in and not so much as glance my way in acknowledgment of the anxiety cloud hovering there waiting for some reassurance that I'm not breaking anything by stepping away.

As it turns out, I won't even be there. Weeks ago I had to commit to a meeting at work, an unmovable HR meeting. How the bloody H could I possibly know that it would conflict with her first gradual entry hour in Kindergarten? Part of me is incredibly frustrated and part of me suspects that the weirdly impossible coincidence isn't one. Papa will take her in and like Heisenburg's principle of the observer changing the observed, it will just go smoother without mama-worry-bear hovering.

Oh there will be plenty more opportunities to hover and explain and cajole and step in and step back. Good thing I like dancing.

I have been quite freaked out about this for awhile, especially around the new year when the change of date made the K-Day approach palpable and the gap between her and her peers was clearly growing rather than shrinking. She makes progress all the time but a typical kid is going light speed to her highway pace. We were reading Harry Potter with my son at age 5 and he had no problem with the complexities of the story. A is more at Caillou speed. This is not bad, it's just so different.

For the most part I do not spend time comparing her to her peers, I just focus on where she is and where she is going, but soon, next week in fact, she'll be in a room with her peers for 6 hours a day, 5 days per week. She has experience with preschool for 6 hours a week with her peers and daycare for 3 days per week with kids ranging in age from 18 months to 5 years. That range gave her lots of options for interaction with both early and sophisticated movers and talkers. She has benefited from the interactions with other kids and I know she really likes a couple of the kids but the kids already sense a difference and the divide between her and the others is undeniable. None of this matters to her now. She enjoys everything. But what about Kindergarten and grades 1-7? This may be the set of kids who she's with for years and years.

Last spring, over a year ago now, our supported child care development representative asked us to get an assessment of Ariel. The assessment had to be from a specific centre near a specific hospital. We asked how to get this and she said, just get a doctor referral. We asked the doctor when it came time for the next appointment and he thought it was unnecessary and probably not possible to get an appointment in time for school anyway. This was 18 months before K-day. We talked to our school staff as well and they also thought it unnecessary. We left messages for the scd rep and never heard back.

Last September rolls around, 1 year to K-day, and the supported child care development representative leaves more messages asking for this assessment. We reiterate that both our doctor and the school believe it unnecessary and don't seem to know about this requirement so could she write it down for us as a 'prescription'? In the meantime we have more appointments with the doctor and the principal of the school. The doctor puts us on the wait list for the assessment all the while warning us that kids with Down Syndrome are not likely to get the assessment because they have a known range of symptoms. The principal checks in with some folks from the district and they say yes we need the assessment because kids with Down Syndrome have a wide range of symptoms. So I get more and more frustrated at a situation that is clearly putting the family in the middle of a ministry of health versus ministry of education battle.

In January I have several dark nights of the soul. I need to spend more time with A working on basic stuff that we always work on but never have enough time for. Stuff like letting her struggle with putting on her own shoes or getting her own lunch box and putting it into her backpack. Even on my days off I am rushing her and her brother around to school and appointments and lessons and I need some space to let her learn and be with her.

My awesome boss works with me to come up with a plan where I can stay involved with my work team but reduce my hours temporarily, June through October. This gives me time to work with her one on one and time to interact with the new teacher and Educational Assistant.

In June, we gather up all the assessments we have from various programs and from our wonderful speech therapist. We await the school meeting between the BC Centre For Ability therapist team and the school and district representatives and ourselves. This is to be the meeting where the information is shared and gathered that will determine the level of support she gets. The week before the meeting we hear that the rotating strikes with likely turn into a full scale strike. I happen to be at the school volunteering for a thank the teachers event. I triple check with the principal. The meeting is still on right? He looks at me with some surprise, tells me he’ll be right back and then sometime later confirms that the meeting will go ahead but not with all the key players. Unfortunately the speech therapist for the district cannot come due to the strike action. I’m crushed because my speech therapist has so, so much information to transfer and I cannot have her time in September or October or whenever school starts because she’ll be taking on her new case load. The meeting goes ahead. It seems to be productive. I meet the Educational Assistant that will be assigned to A half time. Half time might be good. It might not be good. I don’t know. That will be enough to keep her safe but I don’t want school to be a babysitting exercise. The kid can learn and learn she must.

Late June, my mother dies unexpectedly of a heart attack. We all fly to Ontario to be with my family. I stay longer than the rest of the family. My A-plans are shot for awhile but the trip and the time away from me seem to actually stimulate her brain and she makes loads of progress on our goals. Our theory is that travel, especially to somewhere familiar, sparks something in her brain and she goes faster for awhile.

Late August, the talks break off between the B.C. teachers’ union and the B.C. government negotiating team. I rant, I rave, I write letters. Nothing. Zero acknowledgement from my MLA or any elected official. I go to rallies, I write more letters. I'm incensed with the feeling of being held hostage by a government that doesn't give a crap about people and frustrated by other parents who can't see that the teachers are the only ones putting anything on the line here. But that's a post for another time.

I organize a rally and just as I'm trying to figure out how to reach all the parents at our school and the nearby high schools, a deal is reached. Through my lividness at the strike situation I was secretly thankful to have more time. More time to play and fumble around with fastening seat belts and working with buttons and snaps and trying some pre-printing exercises. Now I must quickly shift gears. The day is upon us. I will never feel ready.

This isn't about leaving her. I've had to do that for daycare and preschool and babysitters. This is about a new frontier. Full-day French Immersion Kindergarten. Big kids on the big playground. A whole new group of kids who will all be way ahead of her. A growing awareness of what she can and can't do. This is also about what will happen outside the class. What will her brother do the first time someone says something mean about her in front of him. What will other kids do, the ones that know her and the ones that don't. How different is it now in the cruel schoolyard from when I grew up?

Friday, the teachers went in to clean and arrange their classrooms for the year ahead. I go in with treats to express my support and help out. I run into the two Educational Assistants who will be working with A and her classmate. We chat. I express some of my fears. They are excited and have a plan for each item I mention. I run into her teacher. She tells me about all the research she has done in preparation for having A and her classmate. Her mother is a Learning Support Specialist in a nearby district and she has found all kinds of visuals supports to help her. She is also excited. I am deeply moved and grateful for these professionals who have just been through 5 months of stress and reduced pay. They are all here on a non-teaching day willing to work with me and thrilled to be on the threshold of getting to know A. Maybe they know something. Maybe they feel the wave of Miss A coming their way and they're ready to surf.

More soon I hope.

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.