Here is a short video of Ciaran crawling. We have an update on Shay's walking that we are working on which we will get up soon! I have to say - I just love Ciaran's determination - he continues to remind us that anything is possible - if you set your mind to it :)
Orla and Ciaran
Eamonn on the slide
Ciaran and Shay in the Hamptons :)
Orla and Ciara - sisterly love
Shay having a swing
Not sure if he is impressed or not
Blowing out his candles with his Ova
Training for Hippotherapy
Freedom in Long Island
Shay up to no good!
Shay loving painting :)
Shay crawling - go Shay go!!!
One of my favourites!
Very serious Ciaran...
Loves his pegs..
Mother's Day - too sweet!
the newest addition - lyla elizabeth
ciaran enjoying himself
jill's paradise backyard
one of my favourite pics of riley and the boys
So here I am again - a few months since the last post with so very much to share with the latest things going on in the Parreira/Sneyd household. I have realized that waiting months and months to post is a direct result of feeling very overwhelmed with so much information to report - which leads to my newest resolution which is to post weekly. My intent is to set aside time each Sunday to write a brief overview of Ciaran and Shay's week and serve as a continuing journal of their successes! For today's post, I think my best bet is to work backwards in time, as the most recent is obviously the freshest in my mind.
Where to begin - I guess an easy starting point is Ciaran and Shay's 2nd birthday. On July 5 - Ciaran and Shay turned two. It was a beautiful day that we were able to celebrate with all of our family including our beloved Bev. I personally find Ciaran and Shay's birthdays to be emotional days - as the overwhelming awe of how truly far they have come really sets in. In the past two years, their birth date brings me back to the day that Ciaran and Shay were born - I will never forget the mix of emotions of overwhelming fear of the unknown and true elation that I had for my two beautiful little boys. Over the past two years, Ciaran and Shay have inspired me on a daily basis. They have taught me so much about determination, courage, strength, confidence and most importantly, the meaning of being happy with oneself - a quality that I hope and pray that I can continue to instill in my boys for the rest of their lives.
In one year, both boys have grown beyond what was expected. We will start with sweet, sweet Ciaran. Since Ciaran's eye surgery in March - Ciaran has surprised everyone with his development and his desire to be more independent. My sweet, sweet Ciaran - although still sweet - has become much more vocal, mobile and demanding. I LOVE IT!!! Ciaran is now commando crawling all over the house, is able to pull himself up into a tall kneel which has been key for him to play independently with Shay and is getting closer and closer to walking every day. He loves to sing - included in his favourites are Five Green and Speckled Frogs, If You're Happy and You Know It, Old McDonald, Mortimer, and the Itsy Bitsy Spider. Ciaran is the happiest little boy in the world - he makes this world a better place - and his limitations so far in life do not phase him - he is such an inspiration to me and I feel so blessed that I was chosen to be his Mom!
Then there is Shay....Shay continues to be demanding, determined, stubborn and strong. There are many days that Shay's strong will and determination makes me tired. He is relentless - truly relentless which at the end of the day, I recognize is truly a gift - as this relentlessness and determination will empower Shay in the future - in every sense of the word, Shay is a fighter - and whatever limitations he may have will in no way defer him from him getting exactly what he wants - how lucky are we!!! Shay is now four point crawling which is HUGE!!! He struggles with disassociating his legs - but he is working it out and figuring it out. Four point crawling is another huge indicator of future independent walking - he continues to defy the odds - I always knew he had it in him!!
The week before Ciaran and Shay's birthday - we had an amazing opportunity to take a family road trip to Long Island, NY. Jill Tapper - a childhood friend of mine who has 2 beautiful twin boys herself (five year old Marc and Trevor) graciously offered us her house for a week while she came back home to her roots in Milton. The trip was just what the doctor ordered!! Jill lives in a very small and beautiful community - her home was just that - a home away from home - it was so quiet, peaceful and relaxing. We all enjoyed a break from our reality - the stresses of work, therapy, and appointments. We spent the week swimming in Jill's pool, running by the ocean and visiting a number of small villages/towns around Jill's neighbourhood - including the Hamptons - beautiful, beautiful, beautiful....another reminder for us of how blessed we are to have such amazing friends in our lives!
Speaking of amazing friends - the weekend before we left for Jills - I spent in Honesdale, PA at Summit Camp - the camp for children with special needs that I worked at for 8 years. I went to celebrate the life of my friend and mentor Tim Kedge who passed away after a very brief fight with leukemia. The weekend was extremely emotional for me for so many reasons - one - I had to say goodbye and mourn the loss of a truly inspirational man/friend, two - I was in the company of some of the best friends that I have - who truly understand the magic and meaning of Summit Camp - and three - Ciaran and Shay's needs really hit home this weekend as I was reminded of the children I had the opportunity to counsel, embrace and learn from in my role in the magical world of Summit - words - there are none - just an open and thankful heart for the amazing experiences, lessons and opportunities. For those of you who know me well - I am a firm believer in the idea that 'things happen for a reason' - I am thankful for the reminder - and the reassurance that 'Life is Good'!
A few other noteworthy happenings. Ciaran and Shay started their first week of Camp last week at the Oakville Parent and Child Centre. They absolutely love it there! They go twice a week for 2.5 hours at a time. Not a tear has been shed - they are so ready for the socialization piece which makes me soooo happy for them! After the first day there, I drove home listening to them sing Twinkle, Twinkle Little Star and Old McDonald - they totally sponges - which is soooo exciting!!!
Ciaran and Shay also will be starting hippotherapy this summer which is therapeutic horse back riding. We will be going to Hamilton's Therapeutic Riding Center - they are amazing there! Ciaran and Shay already had the opportunity to watch a lesson and meet and pet the horses - I am so excited for this opportunity as they are allowing the boys to start very young - so thankful! Research shows that hippotherapy and aquatherapy (water) are two of the best treatments for CP. Ciaran loved the horses right from the get go - petting their faces within seconds - soooo Ciaran. Shay - as per - was his cautious self - didn't want to go near the horses initially - however, by the end of our visit was demanding that I bring him back into the stall for more petting - he is so predictable and so cute!!!
Anyhow, need to post pics - I promise this is my last long post! As always, thanks to our families and friends - you are the best and we are forever thankful!!!
The Smell of Rain
A cold March wind danced around the dead of night in Dallas as the doctor walked into the small hospital room of Diana Blessing. Still groggy from surgery, her husband David held her hand as they braced themselves for the latest news. The afternoon of March 10, 1991, complications had forced Diana, only 24 weeks pregnant, to undergo an emergency cesarean to deliver the couple's new daughter, Danae Lu Blessing. At 12 inches long and weighing only one pound and nine ounces, they already knew she was perilously premature.
Still, the doctors soft words dropped like bombs. "I don't think she's going to make it," he said, as kindly as he could. "There's only a 10 percent chance she will live through the night, and even then, if by some slim chance she does make it, her future could be a very cruel one."
Numb with disbelief, David and Diana listened as the doctor described the devastating problems Danae would likely face if she survived. She would never walk. She would never talk. She would probably be blind. She would certainly be prone to other catastrophic conditions from cerebral palsy to complete mental retardation. And on and on.
"No...No!" was all Diana could say. She and David, with their 5 year old son Dustin, had long dreamed of the day they would have a daughter to become a family of four. Now, within a matter of hours, that dream was slipping away.
Through the dark hours of morning as Danae held onto life by the thinnest thread, Diana slipped in and out of drugged sleep, growing more and more determined that their tiny daughter would live and live to be a healthy, happy young girl. But David, fully awake and listening to the additional dire details of their daughter's chances of ever leaving the hospital alive, much less healthy, knew he must confront his wife with the inevitable.
David walked in and said "we need to talk about making funeral arrangements" Diana remembers. "I felt so bad for him because he was doing every thing, trying to include me in what was going on, but I just wouldn't listen. I couldn't listen. I said "No that is not going to happen, no way! I don't care what the doctors say. Danae is not going to die. One day she will be just fine, and she will be coming home with us!"
As if willed to live by Diana's determination, Danae clung to life hour after hour, with the help of every medical machine and marvel her miniature body could endure. But as those first days passed, a new agony set in for David and Diana. Because Danae's underdeveloped nervous system was essentially "raw", the lightest kiss or caress only intensified her discomfort - so they couldn't even cradle their tiny baby against their chests to offer the strength of their love. All they could do, as Danae struggled alone beneath the ultra-violet light in the tangle of tubes and wires, was to pray that God would stay close to their precious little girl.
There was never a moment when Danae suddenly grew stronger. But as the weeks went by, she did slowly gain an ounce of weight here and an ounce of strength there. At last, when Danae turned two months old, her parents were able to hold her in their arms for the very first time. And two months later - though doctors continued to gently but grimly warn that her chances of surviving, much less living any kind of normal life, were next to zero - Danae went home from the hospital, just as her mother had predicted.
Today, seven years later, Danae is a petite but feisty young girl with glittering gray eyes and an unquenchable zest for life. She shows no signs, whatsoever, of any mental or physical impairments. Simply, she is everything a little girl can be and more - but that happy ending is far from the end of her story.
One blistering afternoon in the summer of 1996 near her home in Irving, Texas, Danae was sitting in her mother's lap in the bleachers of a local ball park where her brother Dustin's baseball team was practicing. As always, Danae was chattering non-stop with her mother and several other adults sitting nearby when she suddenly fell silent. Hugging her arms across her chest, Danae asked, "Do you smell that"?
Smelling the air and detecting the approach of a thunderstorm, Diana replied, "yes, it smells like rain."
Danae closed her eyes and again asked, "Do you smell that"?
Once again her mother replied, "Yes, I think we're about to get wet. It smells like rain."
Still caught in the moment, Danae shook her head, patted her thin shoulders with her small hands and loudly announced, "No, it smells like Him. It smells like God when you lay your head on His chest."
Tears blurred Diana's eyes as Danae then happily hopped down to play with the other children before the rains came. Her daughter's words confirmed what Diana and all the members of the extended Blessing family had known, at least in their hearts, all along. During those long days and nights of her first two months her life when her nerves were too sensitive for them to touch her, God was holding Danae on His chest - and it is His loving scent that she remembers so well.