Proving that families are wonderfully varied, providing its members with unexpected joys and challenges, Kathy graciously shares her unique story of raising her precious granddaughter Mikyla.
**From our archives – originally published in our Summer 2008 Newsletter.**
Mikyla Jersey Elaine O’Rourke was born out of love on July 16, 2004 at a healthy 9 lbs 4 oz. It was touch and go and no one really knew, even the doctors, if Mikyla would survive from a serious birth defect called “congenital diaphragmatic hernia.” (Congenital Diaphragmatic Hernia is malformation of the diaphragm; this allows the abdominal contents to protrude into the chest thereby impeding proper lung formation. Newborns with CDH often have severe respiratory distress which can be life-threatening unless treated appropriately.)
There were three babies in the hospital at the time who had the same defect. One child, the most severe who had been on an artificial lung machine, then Mikyla who was on a ventilator and in an induced coma for 3 weeks until she was stable enough for doctors to operate and the other child with a mild defect who went home in less than three weeks.
After 3 months of being in the hospital Mikyla came home. Unfortunately, Mikyla did not arrive home to live with her parents and it is them who truly are the only ones who can explain why. It was me, Kathy, Mikyla’s maternal grandmother that before long became the primary caregiver and legal guardian of the most beautiful precious little girl in the world. Mikyla’s personality speaks volumes once you get to know her, even with strangers she often smiles and says ‘hi’ in passing.
Mikyla is a blessing in disguise. Unannounced to me right away, every challenge that has come my way has been met with perseverance and a strong determination to find the answer. My new challenge was to not only do what would make Mikyla’s life fulfilling but also my own. Although the golf clubs may be collecting dust and the fancy dinners out now replaced with simple meals at home, there isn’t a day that goes by that would make my decision to fight to raise Mikyla any different.
It was a bright shiny day in the summer of 2005 that I received a phone call while at work from my sister to tell me Mikyla’s test showed a sloping mild to profound hearing loss and further tests were needed. A hearing loss that was most likely caused by a side effect from a ventilator that saved her life at birth. As I remember it, my sister was much more upset than me about the news and at first I didn’t understand it.
My thoughts were, because Mikyla had been through so much in her short life already this was no big deal. Thanks to my sister who is a special needs foster parent and was caring for three children at the time; it was her experience with one of the children who is severe to profoundly deaf that made her realize Mikyla’s need to be tested. It all seemed surreal because for two years prior to Mikyla’s birth this severe to profound deaf child had been in my care every second weekend for respite preparing me for what was yet to come. I already had knowledge of sign language and was used to communicating with my hands and facial expressions, this was going to be easy!
Looking back now it maybe was not as easy as I thought because today there remains a lot to learn, decisions to make, resources to find and people to trust. The same important question remains; I ask myself almost every day “what do I have to do to make Mikyla’s life fulfilling along with my own?” People often ask me once I give them a summary of my life how I do it. Telling my story used to make me cry a lot and now I cry less because my reality has given me an inner strength I never knew I had. Today, Mikyla is a striving, happy child surrounded by plenty of love, hugs and kisses. Mikyla’s great grandma and grandpa care for her Monday to Friday while I am at work, mostly out of the goodness of their hearts. To help Mikyla, my mother is taking sign language lessons while Mikyla is in preschool and I receive a lesson on Thursdays on my lunch hour at work. Mikyla did her first year of preschool at the BCFHRC and for this year and upcoming year at the Centre for Child Development in Surrey.
Mikyla and I meet at the BCFHRC with Dyan Spear once a week. Dyan has never let us down as she continues to use every possible resource and teaching tool to give Mikyla the best care and attention needed and beyond. And for me Dyan gives me the guidelines to be a good role model -Thanks Dyan! Our regular weekly visit with Dyan is Mondays and like clockwork Mikyla says as we are leaving my parents house to see Dyan “that way, Dyan.” And she gets mad if it’s not the day!
This summer Mikyla is expecting to receive the new Phonak Naida® hearing aids that hold promise of improving her hearing. This will mean some extra visits to the Guildford Audiology Dept. Some summer fun includes a garden tea party, a visit to Powell River, a 7-week science theme preschool, BCFHRC’s “Mingle and Play” in August (as well as our appointments at the Centre), a few soccer lessons in late August and finally some more ‘R & R’ just Grandma and Mikyla. And finally, a must do, several bus/sky train trips as this is Mikyla’s absolute favourite thing to do right now.
Some of my personal ways of coping with the challenges of a hard of hearing child or living with someone who has a disability, is number one; plenty of sleep/rest. In today’s busy world I must have down time. Second, and equally important, is to learn all I can about time management because it brings me peace of mind instead of trying to juggle everything and burning out; and yes, sometimes the dishes can wait until tomorrow! Last but not least I have had to limit my giving to a point where there must be time without strict commitments to others. For me, I would not be doing the best I can do for myself and/or Mikyla if I didn’t cherish special times or moments without interference.