Saturday, August 4, 2012

It was almost 3 years ago ...

It was almost 3 years ago that Lauren was born and came crying into our world with a little hole in her mouth. Shortly following, our world changed significantly and we started down the path less travelled. The path was unpaved, twisting and winding and was filled with rocks and boulders. It rained and often poured on us at times. The sky was dark, it was cold, and there was no end in sight.

Lauren has an extremely rare chromosome abnormality with the physical manifestation of this anomaly presenting as a cleft palate. We were told that approximately only 20 kids worldwide have a similar genetic make-up, with a wide range of issues from not walking to not talking to heart defects to other internal organ complications. At the time, hearing this news felt like our worst nightmare was coming true. Who would know how different we would feel 3 years later.

The first year was by far the hardest. The countless doctors and specialist appointments stressed us the most. Lauren has endured more tests and procedures her first year than what many of us will go through in a lifetime. MRI, CT scan, multiple ultrasounds, echoes, hearing tests, vision tests, x-rays, sleep studies, bloodwork, and surgery. Her healthcare team was enormous and that baby medical record book where parents note their child's height and weight and the contact information for their pediatrician, was soon bursting at the seams with appointment cards  and reports. We frequent the Toronto Hospital for Sick Children so often during our first year we felt it was almost a second home. We knew where the best parking spot in the underground garage was, the quickest elevators and the best waiting lounges. We'd walk the hallways saying hi to the clinicians who knew Lauren as if they were our neighbours. Sometimes I wanted to sleep there because it just felt so "safe". It was a place where differences and challenges were understood and accepted.

With the cleft palate, we dealt with an array of feeding issues compounded with GERD and reflux. The "special" bottle with the super long nipple only drew attention that something was different and as Lauren moved onto solids, peas, carrots and noodles dripping out of her nose became so common and natural to Lauren that she barely cried when it happened.

Finally there were the therapies. Physio, occupational, speech, vision and early intervention therapies. All her therapists had the best intentions but for Lauren, and for us, it was complete overload. We had goals from every therapists that compounded with every visit, and our rate of progress was slow. So slow that seeing progress was difficult. With Kayla, I saw changes almost weekly, if not daily. With Lauren I had the complete opposite experience. I watched Lauren daily, almost hourly, looking for signs of progress or achievement of new skills and milestones. And week to week I became discouraged and disappointed that nothing had changed.

What was going to happen? What was the future going to hold? What was I going to do? My first year I had many sleepless nights with questions constantly twirling in my head. I was stressed, depressed, mad and sad all at the same time. How could something so potentially beautiful go so wrong? I tried to seek answers in friends, family and prayer.

The second year of Lauren was still tough for the most part. By this time, most of our family and friends knew about Lauren, but not all. Going back to work was difficult because I felt a strong sense of guilt that I wasn't spending more time doing therapy with Lauren. But I knew in my heart that I couldn't play full time therapist and mother to Lauren. I need a sense of balance in my life, and with the controlling type A personality that I have,  I knew I had to leave the therapy to her therapists.

As Lauren got older, we started to see some progress. Her palate was repaired at 14 months. she took her first steps at 18 months and was fully walking by her 2nd birthday. She finally learned how to purposefully release objects (I think it took her 10 months of practice and therapy to be able to do this), was starting to smile a lot more and was able to fully suck from her sippy cup.

Now as Lauren turns 3, I feel that the path less travelled that we were forced to take has changed our family in so many ways. "It takes a village to raise a child" is our staple to getting to where we are today. Lauren has brought our families and friends closer together than ever before. We cheer Lauren on, with every step she takes, every smile she gives and every kiss she slobbers on us. She is her own person and has her own character and personality. While I would never wish any parent to be given the surprise of a special needs child, the learnings are wonders that couldn't be experienced any other way. Yes I still get the dose of frustration and sadness, but they are now often far and few between. Yes I do wonder what she will be like when she is 5, 10, 15 years old, but I have learned now to think so far ahead. If you had told me when Lauren was born how she would be like today, I would have panicked and been depressed - and that's what those nights of googling did to me. Googling chromosome disorders, watching youtube of kids who have vision impairments, reading anything I could find about Lauren's delays. But here we are today. Lauren is almost 3. Not talking, but yet somehow I understand her perfectly. Has only peed once in the potty - good thing she is still in size 3 diapers and diapers go upto size 6. Eats with her hands like a squirrel - get out the vacuum. Doesn't know her ABCs so I'll keeping singing it to her.

Over the last year, Lauren's personality has come shining through. Her laughter is contagious and her kisses wet. She is extremely affectionate and loves engaging with her sister and family members. She finds thrills with the most simplest items ranging from tissue to pom poms to string to dust in the air. She shares a bed with Kayla on the weekend and enjoys poking sleeping Daddy in the eyes on Saturday mornings. Lauren has grown to love playing in the sand and water, enjoys reading books, singing to herself and most recently, watching her windmill toy spin in the wind. She is exploring her environments with more confidence in her step and touch and is more vocal  Her drool is still present, she still eats by shovelling food into her mouth with both hands and she still whines and pouts at the top of the stairs wanting to be carried down. I guess some things never change.

So while we've had our ups and downs the past 3 years, the past year there have been many more ups and fewer downs. I used to dream that my life was just a bad dream, and that one day I'd wake up and everything would be "normal". I'd have two perfect little girls. I don't have those dreams anymore and the reality is, I do have two perfect girls. They are just perfect to me.


  1. "Doesn't know her ABC's so I'll keep singing it to her..."
    That simple line made all the difference to me tonight. What an encouragement you are, thank you for posting this!

  2. Happy birthday to Lauren, the perfect girl for you :)


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