Tuesday, June 29, 2010

Welcome to Holland


by Emily Perl Kingsley

When you're going to have a baby, it's like planning a fabulous vacation trip -- to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland

Monday, June 28, 2010

Its how you play the cards

So we got an unofficial diagnosis of cortical visual impairment (CVI) or sometimes known as cerebral visual impairment. After learning about what CVI is and its characteristics, I realized that Lauren did fit many of the classic symptoms. CVI is a neurological vision impairment and is something that can't be fixed with glasses or surgery. Of course, I am sad again. I feel bad for baby Lauren, to not be able to see properly and to not hear properly, the world must be such a confusing place for her. I would be so scared. I can't imagine how she must feel or what she is feeling. To have two of your senses impaired in some way, it must be hard to make sense of everything around you. I wouldn't know what to do but just eat my bib...which is what she does!

So what to do now? Well, we are going to start working with a vision consultant who is going to evaluate Lauren's vision from a functional perspective and then we'll have to start "training the brain". The good news is that her vision should improve with time. How much it will improve, we don't know. But simple things like perhaps showing her objects against a solid dark background instead of a busy background can help her "see" better and process the information easier.

Why did this happen? We have no idea. We have no family history of any of this. Why us? We have no idea. I guess why not us? And maybe it makes no difference. The cards have already been dealt at this point. Now its about how we play the cards. We are getting Lauren all the help we can. We'll just have to wait and see....

Friday, June 25, 2010

A perfect beginning to summer

Lauren sat up on her own! It happened on Father's Day. I put her on her tummy and went to wash the dishes, then when I came back she was sitting up. I was in disbelief! I kept asking Steve if he was sure he didn't touch her and he kept insisting he didn't. Then the next day, my dad found her sitting up in the playpen after a nap. And finally today, she did it again, this time right in front of our own eyes, with Kim, Caralen and Keith as witnesses too. We were all so happy. We made her do it 10 more times, just to make sure it wasn't a fluke. You should have seen us all cheering and clapping for her...it was very memorable.

On a different note, Kayla has announced this week that she no longer needs the potty training seat to go pee, she wants to sit herself up on the real toilet seat by herself. She is getting to be such a big girl! Kayla's last day of school was today. And then its 60 days of summer at home...I hope I can survive. I've signed her up for a variety of activities to keep her busy including soccer, mini chefs, skating and arts&crafts. Of course she'll also be engaged in household activities such as laundry sorting, weeding, watering the flowers, dusting with the swifter duster and making lunch!

An update on Lauren - We are scheduled to see the eye specialist in late November and the hearing specialist later this summer. I can't believe the waits are so long. Even when we see them, who knows if this will only mean more tests and more waits. Lengthy wait times, the results of a public medicare system. But what other choice do we have? Buffalo?...So in light of all that has happened, and the odds of everything that has happened, we decided to buy some lotto max tickets for tonight's draw of $50 million..maybe, just maybe, we'll hit the odds on a winning ticket. And then maybe we will be heading to Buffalo...

A funny remark by Kayla this week - I went into her room to wake her up for breakfast. When I walked in, she said "mommy you scared me" (because I had quickly opened the door and she was startled)..."you are like a ghost". Ha ha. Love it!

Wishing you all a wonderful weekend. And happy 60th birthday Choo mom!

Thursday, June 17, 2010

An early shout out: Happy Father's Day

To the #1 Daddy of Kayla and Lauren: Kayla and Lauren are very lucky to have a fun loving, silly dad like you. Without you, there life would be full of drills, commands, and not so fun stuff with their police-like mom. Kayla running to the door everytime you come home from work, Lauren smiling and drooling at you adoringly from afar and near, both girls snuggling in bed with you on a Saturday morning, these are the pictures I have of you with our girls. You've taught Kayla how to ride her tricycle, how to make silly faces, how to topsoil the lawn. Lauren always looks forward to spending time with you every night from bath, to bottle, to book, to bed. While we watch both girls grow up, they will amaze us in their own way I am sure. Continue to be strong, optimistic, fun loving, and nurturing, the girls need it and so do I. Happy Father's Day...now lets see how long before you read this on this blog.

Sunday, June 13, 2010

Finally the purple elephant in the room is out

So after reading my blog on Lauren, you are probably wondering what you can do to help.

JUST ENJOY HER. Please don't treat her any differently than you would with any other child. We want Lauren grow with confidence and high self esteem that she can do anything she sets her mind to achieve.

A good friend of mine the other day told me a story of a disfigured child who didn't know she was disfigured. Growing up, her family and friends treated her all the same, as if she looked perfect. When she grew up, only when she went to school did she get approached with the question "why do you look like that?" She would answer confidently, "look like what, this is the way I just am". Another good friend gave me the advice of "when you go back to work and look back at Lauren's 1st year, what will you remember? Will it be the countless appointments, the tears, the disappointments, the sadness?" I answered YES. "Then you are not enjoying her" She then remarked that she will always remember Lauren's as being super smiley. I guess what she said really hit me. So I try not to stress and enjoy the things all moms should enjoy such as the first day she found her toes and they made it to her mouth, the first time she reached for something with her hands, the first time she ate solids.

So just enjoy her. Play with her. Smile with her. Interact with her. Please don't test her. Please don't "observe" her or "study" her. I know its hard not to as we all try and understand her needs, but let's leave that up to the experts to do, although I do catch myself watching her at times too and wondering. I can show you some simple exercises or positions that you can do to aid her muscle strength while you are playing with her (as you can see, I squeeze in physio wherever and whenever we can!).

Some of you have know tidbits, some of you have known for awhile, some of you are finding about all this right now. Don't be afraid to ask us questions. We'll be happy to chat. Its actually good for us to talk to people, it helps clear the air and gets things off our chest. You know me, I like to be open and honest. The past 10 months has been a roller coaster of emotions, but I think we are now at the point of finally being able to speak aloud and acknowledge the purple elephant in the room. There were so many times we wanted to say something, but unable to cope with the information ourselves, you can imagine how difficult it is to share the news with family and friends. We didn't want disappointment, judgement, or grief. Of course I wish things had worked out differently, and wonder countless nights what went wrong. But the truth is, this is the way it is, there is no point crying over spilt milk. It is what it is. So let's just move on and help her, enjoy her and grow with her.

Saturday, June 12, 2010


So where to start about our second addition? She was born in August 2009 in Markham, Ontario. Labour was pretty easy, about 15 minutes and out she popped. We were told immediately after she was born that she had a cleft palate. We were shocked. Neither of us even really knew what a cleft palate was. Immediately the nurses showed us how to feed her with a special bottle called the Haberman, where you pretty much squeeze the milk into her mouth (because she can't suck the nipple on her own very well). We both picked up how to use the new bottle fairly quickly and went home with our new bundle of joy. 2 days later after insufficient weight gain, Lauren was admitted to the hospital where she was diagnosed with Pierre Robin Sequence (PRS). Her cleft palate was a complete hard and soft palate absence. She had some minor respiratory problems (which were quickly addressed through positioning her in a certain way when she was sleeping in her bed) and was noted to have a small chin.

We met with the plastic surgeon and the cleft feeding team at Sick Kids Hospital in Toronto. They informed us that Lauren's PRS case was quite mild and that likely she'd be scheduled for palate repair when she was 12-14 months old. It seemed so far away at the time.

A few months down the road, we were referred to the genetics department at Sick Kids to see if they could uncover a reason for Lauren's cleft palate. After doing some genetic testing, they discovered that Lauren had a difference in her chromosome make-up. This was likely the cause for her cleft. But because of this chromosome difference, we could possibly expect some developmental delays.

Fast forward to today. Lauren has come along way. Although she has been achieving her milestones a bit later than normal, she is getting there... just on her own time! We are so proud of her. We have a physiotherapist and occupational therapist helping her weekly, and we'll soon be adding a speech therapist to the team as well. She is on her own developmental curve and will continue to develop at her own pace. It is frustrating, yes. Especially when you have a type A mom like myself who wants everything done her way (meaning on time, with little patience for delay or assistance). Well boy has this changed me. Lauren has taught me the virtue of patience. I am now a better mom because of Lauren.

We recently found out that another reason for Lauren's delays is that she is not seeing and hearing very well. We had noticed something was not "right" with her early on, but could never pinpoint exactly what it was. After months of waiting for referral for testing by specialists, and months of waiting for an appointment date, and then followed by months of waiting for the results and we finally received the results a few days ago from our pediatrician. Hopefully soon (if there isn't another long wait), we will be meeting with Opthamology and ENT to better understand her visual and hearing impairment and the treatment/therapy options available.

So how do we deal with all this? I won't lie. It's completely over whelming. This is a completely new world to us. Now I have added words like Early Intervention and Special Needs to my dictionary. It is frightening, yes. And yes we are scared of what the future holds for her. But we do know that she has a very loving family of parents, sister, grandparents, uncles, aunties and cousins who are all going to help her out along the way. Help her to achieve what she is destined to achieve. She is loved unconditionally by everyone around her and has blessed our family in so many countless ways. We enjoy her each day and live our lives day by day. We have learned not to needlessly worry about the future as who knows what the future holds for anyone?

With her 4 little teeth and faucet like drool, Lauren is a very happy baby. The only time she gets mad is when we are doing her exercises (she protests and it's the cutiest thing!). She loves playing with Kayla (especially pulling on her hair) and Kayla loves to entertain and feed her. Lauren recently moved to the sippy cup in preparation for her surgery (we still don't have a date) and recently we were told that we need to start trying to fatten her up (like giving her table cream in her milk) because she is on the small size...I'm not too worried as Kayla was only 16lbs at 1 year, and Lauren is currently about 14 and a half pounds at 10 months....we have tiny girls... it's in the genes!!

Thank you for listening.

Welcome To My Blog

I've thought about doing this for awhile now. As we all get busier and busier this seems like an ideal way to keep everyone posted on how our family is doing. I'm a pretty blunt writer, a tell it as it is person, so most of what I write will be to the point. If you ever want to chat about anything I share, we are only a phone call or email away. Thank you for following my blog.
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