An Ugly Day

I remember one of the 'dark days' in particular, the day I naively asked Liam's vision consultant, even though I knew the answer deep in my subconscious, "will he need a cane to walk?". She looked at me with tender eyes and replied softly, "yes". Liam slept in his swing just a few feet from me completely unaware of the devastation ensuing around him. I was standing in my kitchen facing the backyard. I looked outside choking back tears that July morning: a blue cloudless sky, plush green grass, and a tall red maple tree stared back at me. It was an ugly day.

The thought of my baby needing a can to walk around, to navigate within his world absolutely broke my heart! I could barely contain the waves of nausea that took over my body when the I tried to process the words I was hearing. I cried oceans of tears in the coming weeks and months - and if I'm being honest - even years after hearing those words. Nothing could soothe the complete and utter devastation I felt, nothing  -  except time.

Fast-forward 3 years...

The pride I feel when I see how far Liam has come since those days prior to any of his cleft surgeries, prior to having any notion that the newborn baby I held in my arms was blind, prior to the 14 weeks of waiting for the diagnosis of bilateral PFVS/Norries, prior to the MRI that indicated Liam had normal brain function, prior to his 3 ear tube surgeries, prior to his countless evaluations under anasthetic, prior to my 8 trips to Detroit for check-ups and surgical procedures, prior to Liam's endless occupational, physical, speech, and vision therapy appointments, prior to all the loss and fear of the unknown...here we are today.

A happier and stronger family that has endured far more than most of the people in our lives. And conversely,  far less than many of the families of special needs children we have met since Liam's birth. We live now with a sense of contentment, we don't sweat the small stuff, but we marvel in the little things each day brings us.

I sit here today 3 years later - still with tears in my eyes - but now tears of joy. With the realization of how much we have all grown as a family. Of how we have all become better people: a better spouse, sister, brother, daughter, son, friend, neighbour, colleague, parent. Liam has brought so much into our lives - and although there is still fear of the unknown - when I reflect on how far we have come in 3 short years, the excitement I feel for the future is almost too much to contain! Thank you Liam for choosing us to be your family!

A Beautiful Day!
Top: Riding his bike at daycare
Bottom: Liam's first white cane!
We love you sweet boy!

Picture Perfect!

Just another day at daycare!
Learning, reaching, playing, balancing!
Thank you Amra! For all that you've done
and all that you continue to do!

Mission Impossible!

Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible. St. Francis of Assisi

It certainly 'feels' like the impossible when it comes to Liam + walking. This kid just DOES NOT WANT TO MOVE! It's easy for me to shrug my shoulders and say, "I don't get it", but really, I do. Liam has no frame of reference, no real understanding of space and his surroundings - except for me 'telling him' - that I'm 'walking' to the kitchen, the living room, daddy's lazyboy, daycare, he really has no idea what I'm doing. Maybe he can feel the bumpiness while he's in my arms of me walking, but really, they are merely words to Liam. He doesn't have the visual understanding that people walk, kids walk, babies walk. That there are many different rooms in a house, that there is a ceiling above us keeping out the elements. That we walk to get to a destination, to find something we need, to get to the car, to go to the fridge. For Liam, his entire world, quite literally, ends at the tips of his fingers. If he can't feel it, it simply doesn't exist. Sometimes this concept overwhelms me, when I drive late at night and all you can see is whatever direction your headlights point, that gives me some sort of 'look' into Liam's world. All I can see is just a few feet in front of me. I can't see beside me or behind me, it's a comforting feeling for me. I almost get a feeling of contentment and safety. It's just me in the car with my music.

The other night, Liam took his own hand and placed one finger in the palm of his opposite hand. The next thing I realize, Liam was actually reciting, "Round and Round the Garden Like a Teddy Bear" while doing the motions to himself! OMG I was beaming listening to him! Then he started singing, "Frere Jacques"! His words are still something only a mother (or dad or his teacher Amra) could understand, but still, it was a song - that he was singing - and knew EVERY word to!!!

Here's a picture of Liam taken this summer. All I can say is CUTEST PICTURE EVER! Love this little guy!

Liam, Summer 2011