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.

Peace be the Journey

This is probably all over the community news already but I just got wind of it. This guy Casper is riding across Canada to raise money for the Canadian Down Syndrome Society. His goal is $1 million. His inspiration is his cousin Andrew. Click here to find out more. You can even sign up for a daily inspirational text message. Go Casper, Go Andrew!

Well, what did I expect?

Really, what was I expecting? When A was born my expectations were shattered and replaced by some terrifying images. Gradually, those images have also been shattered and replaced by some great stuff.

Did I think she would light up our lives the way she does?

Did I think she would make the 'Homer' noise when presented with tasty food?

Did I think she would be able say a few words so soon?

Did I think I'd be her handler at a professional photo shoot?

No, no, no and no but here we are having a grand time mugging for the camera and showing off the fine outfits designed by my friend L over at Green Bean Baby. One of the many wonderful things about my friend is that she didn't think twice about including not one but two models who happen to have an extra chromosome each. She simply chose a group of cute kids to show off her great stuff. I guess including is the key word here. Here they are sporting the new hoodie. Looks great on boys and girls alike. If you want to see A on the website, navigate to products and then bedding.

Birthdays

So, this post is about 2 months late. The kids were born 4 years minus one week apart so there is alot of birthday activity in early March. When T turned 1, we had a big bash to celebrate. It was more about us getting through that first intense year than about fun for him. Subsequent birthdays have been all about him. This year it seemed fitting to celebrate the two big milestones so we had another big bash. It was great, we may never do it again but it was super fun and a lovely way to celebrate our lovely girl's first year and our young man's fifth.

As in the past, we didn't get any pictures. We were too busy talking and dealing with cake and food and coming and going. Fortunately this time I handed our video camera to a friend and asked her to get some footage. It has taken me a long time to get any time to put this together but here is a little taste of birthday week 2010. The song in the video is Kooks by David Bowie. My friend S reminded me of this song just before A was born and it has been her best lullaby ever since.

A year ago we were leaving for Kamloops, shifting out of the shock of A's diagnosis and trying to find a shaky footing on the road to acceptance. We were also rejoicing at her new found successful breast feeding latch after a 6 week odyssey of trying everything. She has lead us on quite a journey since then. I have big hopes that she will continue to teach us and show us what really matters. Happy, happy birthday to both my magic love children and thank you both for landing on our little planet.

Learning to Nurse, how it all went down for us

This post is for Amy, Queen of the World and her handsome young Dylan. She is trying to get her guy to latch on. It can be very difficult for any baby and for babies with Down Syndrome, low muscle tone and low energy makes it even harder. So, in the hopes it helps, here is how it all worked out for us.

Day 1 - Baby arrives 10 days early in a remarkably quick home birth. I see immediately that she has DS. She can't latch but we keep trying. Midwives call a lactation consultant and refer us to a pediatrician for testing. They advise me to express in the meantime and feed her the precious drops of colostrum with fingertips or dropper.

Day 2 - Still no latch. LC arrives and assesses the situation. She explains the benefits of breastfeeding and encourages me to stick it out as long as possible. I nursed my son for 3 years. I'm already sold. She says the stakes are even higher for kids with DS. It helps their immune system of course like any child but the action helps their jaw and mouth tone which helps future speech. Also they are often less likely to get ear infections which in the long term will also help hearing and therefore speech. I'm still sold but how do we get there?

Pump and feed until she gets strong enough to sustain a latch. Keep her close to the breast as much as possible even when not trying to nurse. Somehow try without trying too hard. Don't make it a stressful experience for either of us. Oh yeah, and get help for everything else that needs doing cuz this is going to be intense.

Pumping, Practice and Patience

Day 3 - My sister is staying with us and helping out. I am pumping every 2-3 hours and then I or DH or sister S is dropper feeding little A. She is sleepy and hungry. She can get a latch briefly on the right breast but cannot sustain it for long enough to let down the milk. Her weight is not going up.

Days 4-6 - Milk supply wavers. I'm not sleeping. I have a long strange history with insomnia. It arrives at the most unwelcome times. There are few chances to sleep and with the pressure to sleep when I can, I can't if you know what I mean. So milk is affected. I start taking milk thistle and fennel supplements. They work. I also call my friend and homeopath and she helps me through the panic.

Week 2 - My mom arrives and starts taking some night shifts. She is my hero. Baby A needs a more efficient feeding system. The dropper is taking nearly an hour. I fear the bottle. Doesn't that mean failure? LC steps in. She reassures me that the main goal is to get little A strong enough to latch. She needs food. She recommends the playtex bottle with the fat nipple. She shows us how to feed holding it horizontally so that gravity doesn't help too much. She still needs to develop her sucking power.

Days and Days go by. Somewhere in there, I have a near miss with mastitis. Pumps do not drain the breast as efficiently as a baby does so there is a tendency to get blockages. I'm advised to massage them out and use hot compresses. I start shaking uncontrollably with fever. I call the midwives and my homeopath. The midwives arrive with a prescription and a homeopathic remedy. I try the remedy first and it works in 20 minutes. Whew!

More time goes by. Friends are dropping by food so I don't have to cook. Other friends are taking big brother out for fun times while I struggle through this grueling schedule. Volunteer doulas are helping me through the 4pm - 7pm stretch where I have to feed two kids and get them to bed. DH is away. Did I mention that the only times he's ever had to travel for work are right after our babies are born? (yes, I've been asking God about that one for awhile). Anyway, we keep trying. Some days we don't even try to latch. Other days she gets on for a significant time. Every time I get discouraged, I call the LC. She says, don't worry. This could take weeks and even months. Great, I think. I can't even give up honourably yet.

Somewhere in week 5 I start using a nipple shield for the latch attempts. It sort of resembles the bottle and it holds any milk drops ready for when she is. Things start to improve rapidly.

Somewhere in week 6 I talk to my homeopath about remedies that might help for DS. She finds one and we give it to baby A.

On the Tuesday of week 6, I put her to the breast and she drains it in 15 minutes. I stare in shock and disbelief. Then I thank God. I pack her and her brother up and head out into the world to start living the busy but manageable life of a mom with two kids. By this time, I'm hardly thinking about DS at all. Who's got the time?

So what was the magic? I have no idea. Probably grace and luck. Baby A has no health issues. We were spared the NICU experience. Her heart is great and she's as calm as I am not. I know of many other people who tried for much longer and eventually gave up. They are heroes. Although it was the craziest time of my life, in retrospect, it could have been alot worse.

So Amy and anyone else trying to get their baby to nurse. Try as hard as you can and no harder. Don't feel bad if it doesn't work out. Just do your best and your little sweetie will know you did.

Thanks to my friend and homeopath, my LC, my families, my friends, the strangers who stepped in, the midwives, the doulas and THANK YOU GOD!

BTW, little A has gone on several nursing strikes starting at 7 months. She is too busy for that baby stuff. Aaaaarrrrrrrggggghhhhh. I love her so much. She makes me crazy.