Sit down, buckle up, and HANG ON!

Roller coasters terrify me.  I mean I can’t even think of being on one and immediately my palms begin to sweat, my stomach becomes noxious and my heart feels like its going to beat out of my chest. The mere thought of being propelled at a ridiculous speed down a rickety track and then suddenly dropped to a death defying plunge,  to then be ripped back up into the atmosphere, twisted and turned in every direction….well, let’s just say…you would NEVER get me on a roller coaster in a million years!

Or,  so I thought.

Funny how the Universe works….

The day Olivia was born, our ride began.  We sat in that proverbial seat, locked the bar into place and began the journey down the rickety track. I thank God everyday, we didn’t have to face this journey alone, we had each other.

Being parents to a child with special needs, feels every bit like riding a roller coaster.  You have genuine fear, not for yourself, but for your child.  The fear of the unknown…fear for their health, fear for their future, and fear for their acceptance.

You rely on each other for strength and  support, through the highs and lows.  Sometimes that proverbial ride can reach a high, that puts you in a state of elation.  You feel so much hope and joy and feel as if everything will be fine. Then suddenly, as quick and unexpectedly,  the high is no more. You have just been thrust into a death defying drop…your heart sinks and everything around you is moving so quickly,  you can’t see where the drop stops.  All that gets you through is hope.  You know circumstances are out of your control, but you can control how you feel in that moment. You feel hopeful…and what drives that hope are the moments that first developed it.  The first time your child smiled at you,  when before that moment, months before that moment, your child struggled to produce a smile; or the moment you were told they would never walk, and after months of therapy and months of enthusiastically motivating them, through some miracle, you witness their slow and unsteady, yet methodically thought out step!

Like I said before, I absolutely hate roller coasters,  however this ride is an exception.  Yes, there were times that truly tested my courage,  but taught me to be a stronger mother. I am thrilled we were chosen to be apart of this ride, because folks…it’s AWESOME!

Words Not Spoken

Olivia has never said the word, “Mama” or spoke the words, “I love you”.  My daughter is nonverbal, but she does not lack communication.

Even though none of these words have ever passed over her lips, my heart heard and felt each and every one. 

You see, her eyes communicate every emotion, every thought, every word.

It is true when they say, “the eyes are the windows to our souls”.  Every time I look into those awesome blues, I see love, joy, and wonderment for the world around her.

She portrays more in a single glance, then I ever could in a thousand words.

I don’t know if her speech will ever develop,  it’s something only time will tell.  However, I do know this…”Optimism is the faith that leads to achievement.  Nothing can be done without hope and confidence” ~Helen Keller

Hero

Olivia came into this world fighting…she was the biggest baby in the NICU,  weighing 9 lbs 3 oz.   During her arrival, Olivia suffered from hypoxic ischemic encephalopathy…meaning she lost blood and oxygen to her brain.   We would be later told, seven months later, that our daughter had Spastic Quadriplegic Cerebral Palsy.

We were referred to a pediatric treatment centre where we would receive the gravest words ever spoken to us, “your daughter will never walk or talk and it’s likely she will feel like a prisoner in her own body. As she gets older you will have to watch for signs of depression. ”  It felt like I had been punched in the gut so hard I couldn’t breathe.  I wanted to scream right there, but instead I sat quietly while the doctor continued her speal.  I remember my husband and I driving home, not saying a word.  Both of us trying desperately to digest this information.

Months went by and we took Olivia back and forth to appointments with physiotherapists,  speech therapists, occupational therapists, pediatricians,  feeding specialists,  neurologists,  and so on.  For a while, I felt like a raft a float in the ocean….just drifting.  I remember wanting so badly to talk to another family experiencing the same nightmare we were going through….but to no avail.  You see, we were stuck.  We had not been able to look past our daughter’s disability.

Then we would meet Sarah.   She was assigned to us as Olivia’s social worker.  Sarah would become our light through this dark time.  She helped us to put words on what we were feeling.  If I can give any advice to any parents going through this now, it would be to utilize this service.  For the first time in months, I could breathe.  For the first time in our daughter’s life we would see past her disability and see her! 

Olivia is a remarkable little girl with such a loving spirit driven by unspeakable courage and determination.  She has taught our family so much through her strength.  We don’t get hung up on milestones,  we celebrate her daily achievements.  
We celebrate the here and now and always have hope for tomorrow.

“A hero is an individual who finds the strength to persevere and endure in spite of overwhelming obstacles” ~ Christopher Reeve

I Am A Mom

I am a Mom.  Sometimes I’m a hockey mom, a soccer coach mom, a “Mom, can you bake cupcakes for my class?”, and I’m also a “special needs” mom.

All of those Mom roles I cherish very much, but none has taught me more than being a mother to a child with special needs.

When my youngest daughter was born, she suffered brain damage.  At seven months old she was diagnosed with Cerebral Palsy.  My husband and I knew nothing of what this meant for her future. From doctors, we were given a lot of doom and gloom. We literally began to grieve.  We were grieving over the loss of the “perfect” child we had imagined.  We were fools!

Our daughter has taught us so much over these last four years! First and foremost,  she is perfect.  She has this ability to bring people together with a smile.  Her love and affection can be felt immediately in your heart by the gentleness in her eyes.  She has taught me to look for the beauty in today because the future is not guaranteed.  Lastly, she has taught me to appreciate the small gifts in life, they are the true miracles.

For you new “special needs” Mom’s,  you have no idea how big of a blessing you’ve been given.  The road will not be easy, but I promise you the scenery along the way will be breathtaking!