4 Years of Hope and Inspiration

If there is anything the last 4 years with Quinn have taught me, it is to live for today and hope for tomorrow....to not look back and dwell upon what has been.

At the same time I am cognizant of the fact that I must also remember where we "have been" in order to move on.

As a mother of a child with multiple special needs and diagnosis' I remember the days when things were at their worst and more specifically, I remember the days where we were given news that would change our lives so profoundly that it rocked the core of our existence and challenged everything we knew, and thought we knew about being a parent. Having been someone who worked with children with special needs for the better part of 20 years, it also gave me the perspective as a parent i had never had, and never wanted to have. (most of my work has been done with children with Autism, ironically)

Two years ago today my son was diagnosed with Autism. It was not a surprise by any means...in fact I had spent the better part of the previous 9 months trying to convince family members, friends and even professionals that my son was having a serious developmental regression. I will not rehash the hell it was to see my son rapidly slipping away, retreating if you will, into a world that we did not undedrstand but I can tell you that the pain of seeing my once happy, social and verbal little man regress into a child who was withdrawn and unresponsive was unmeasurable.

By the time we actually got to the day of his assessment there was no doubt in any one's mind who knew him, that he would be diagnosed with Autism. I was fully prepared to hear those words...or at least I thought I was.

What I was not prepared for was how paralysed I felt at actually hearing them, at the reality that hit me with the weight of a Mack truck and how helpless I felt and how angry I was that after all Quinn had endured in the first two years of his life, that he was now given a life sentence of Autism.

To put it in perspective, two years to that day Quinn had been in the hospital fighting for his life. He had had a stroke, was having life threatening seizures, caused by the stroke and the stroke was caused by two holes in his heart that they had just found. He also had a life threatening enormous hemangioma (vascular tumour) on and in his face, brain, neck, eye...etc that at only 4 weeks of age had disfigured him severely leaving him without a right upper lip. the right side of his brain (specifically the right cerebellum) was under-developed. He had been on chemotherapy for a year and was facing extensive plastic surgery if he ever had a chance at a normal appearance. We had almost lost him 4 times and most of his first two years was either spent in the hospital or in doctors offices.

We were exhausted mentally and physically. We were not prepared to take on anything else...especially Autism. To say that it didn't seem right after all he had been through, to throw Autism in the mix, is an understatement. A big one.

Up until that moment, where he was officially diagnosed, I had hoped that someone would tell me it was all a big mistake, that his symtomology was due to the stroke, or the malformation...but they could not. There was no denying that my son had in fact suffered a sudden regression that led him into the world of Autism at 15 months of age. Prior to that he had no symptoms or signs of having it. One day he did not have it, and then next he did. Why, well we will never know for sure and it does not matter to us anyway. The suspicion is that it is linked to his specific case of PHACE Syndrome and his brain malformation and stroke. What triggered the regression, again we will never know and I refuse to dwell on that because it is what it is and it was meant to be.

Looking at my son that day 2 years ago, I was terrified at what they future held for him. He was trapped in a world that I could not pull him out of and I was afraid that he was going to be living in it for the rest of his life.

While behind the fear I had hope, it was hard to see that day.

Little did I know that two years later he would have reestablished a bond with his family, would allow us to comfort him once again and would seek out affection and approval one day. He would also learn how to vocalize once again and while still mainly non-verbal he is beginning to say a few words, some even appropriately. It took 4 years but he finally gave me a name, mama....and the boy can sing. He can pick up a tune like no body's business and while you might not understand each word he sings, the thought is there while pronunciation may not be. He understands everything we say, maybe not all we do as social behaviour will remain a mystery to him until he learns otherwise. He even responds to some commands and now looks for approval after he has completed them. That is a big deal, the fact that he now looks at us is a big deal. The twinkle that he lost is now back in his eye and he has a mischievous way about him and a sense of humour that research states he should not have...but he does. Some of it is even appropriate now.

Hemangiomas are no longer a part of our everyday vocabulary. Long gone are the days of chemo, steroids and monthly dermatology visits. We still have scarring and deformities but we also have hope. After two major plastic surgeries, Quinn has a much more normal appearance and while it is not important for us we are thankful that this hope exists for him and that after one or two more major surgeries, he will no longer have to live in the shadow of that hemangioma, or the destruction it caused.

He has continued to recover from the stroke and is walking and even running quite well these days. Balance and coordination remain a bit of a hurdle, but he is getting there. He finally uses his right hand and doesn't always hold it in a fist up to his right side as he did before...well not as much anyways.

Seizures and migraines are no longer a nightly/daily thing thanks to something called Valproic Acid (Depakote) We may not have been able to eliminate them altogether, but they do not rule his life any longer, and that is a very big deal.

PHACE Syndrome, for Quinn, is no longer bigger than life. His medical issues are all stable and we are extremely grateful for that. No longer is it a matter of it he survives this. He has survived, he has survived a lot, more than your average 4 year old..by far. He will continue to survive and we will continue to hope, that despite some very big obstacles in his life, he will prosper and be happy. Quinn is happy, in fact he is rarely unhappy and is very laid back as a rule.

June 4th, has a history of not being a very good day for us, but today, looking back on where we have been and where we are today in Quinn's journey, I can see it as a reason for hope. It is no longer the anniversary of some very rough times, just a reminder of why we are where we are today. We are in a much better place today and like it or not it is because of this day that once held so much pain, one, two and three years ago. Today, it represent hope. Hope that it is possible to overcome adversity, even when it is piled on top of other adversity. There comes a time when you crawl out from under that pile and you shake it off. You realized that you survived the worst, learned from it, and will now be able to make the best of what is to come. Life is what you make of it and my son has turned the hand he was dealt, into hope.