Caregiving, Dealing Hope

March 19, 2021

Inside the life of parenting 4 kids with complex needs

I'm WillowjakMama!

My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. Now it's my favourite place to be.

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I had never intended on being “Mom”. I had specifically stated that I did not plan on being “Mom”. I moved to Hamilton to attend University and worked my way through my undergrad years by supporting children and adults with intellectual disabilities in a variety of settings. Once I had earned my B.Sc. in Psychology I worked in group homes and then as an Educational Assistant. But then I picked up a client after school one day for what we thought would be a short visit and he just stayed. That was almost 20 years ago now. Since then we have had 3 more children join our family through fostering and adoption.

Our eldest, my Bubba, lived through most of his childhood without a firm diagnosis. He is 26 years old and genetic testing has changed dramatically since he was born. He was finally given the diagnosis of Pontocerebellar Hypoplasia type 2a. It comes with a pretty grim, life limiting description if you take the time to read medical journals. Through sheer luck he has managed to escape many of the symptoms but he lives with significant physical and intellectual disabilities. He relies on us for all of his personal care, needing help to move hjs wheelchair, eat, dress, communicate and interact with his environment. And his dimples can charm even the hardest heart.

Our oldest daughter somehow snuck in to our hearts just weeks after we moved in to a bigger house. She was a Teeny Weeny 5 year old weighing in at 7kg. She had lived through encephalitis as a neonate and it had caused severe brain damage. That damage now affects all aspects of her life but not to the extent that brain images say it should. My Teeny has been diagnosed with mild cerebral palsy, vision loss, cortical visual impairment, intellectual disability, autism, and epilepsy (her most recent diagnosis). In her 21 years she has continued to show the power of perserverance and neuroplasticity.

As life settled for our 2 eldest we began providing respite to foster families with babies in their care. Oh they were so cute and cuddly and a lot of work. But one little came to us just before her 2nd birthday and stole our hearts. She moved in permanently just before her 3rd birthday. My DooDee was born almost 3 months early and has lived with the consequences of growing in an incubator instead of a body her whole life. She has severe cerebral palsy and an intellectual disability. She is a pink loving, panda fanatic with a bright pink powerchair.

And then there is our little man. I was bored with our kids all in school and me at home. I am not bored anymore!!! He is a wonderful explosion of energy. He was born with an extremely grim prognosis right on the line of viability and endured multiple complications while he continued to grow in the NICU. He has a laundry list of medical needs, has been hospitalized over 515 days in his 8 years and has had 21 major surgeries (15 of them on his brain). He has blown away all expectations and continues to challenge me to learn more and be better.

I suppose that my years of working in “the field” prepared a little bit for the large family that I now have. We have been fortunate to have tremendous support from our Children’s Aid society both at a systems level and at a personal level. I know that is not always the case. Adoption is not an easy road but parenting complicated children never is.

Because of the life limiting and life threatening diagnoses that my children have, our focus has always been quality of life, not quantity. I strive to live life with no regrets, to not regret what we have done but also not regret what we have not. For this reason our children have lived an adventure filled life. Prior to becoming parents we had been in the early stages of planning a trip to East Africa. So it only made sense that, once our eldest was medically stable, we pack him up and fly to Tanzania. He loves adventure and he loves The Lion King. It has been one of the coolest things that I have ever done. As our family has grown, planning travel has become an adventure in itself. It is easiest for our family to travel by van since renting an accessible vehicle at our destination is incredibly challenging. We have driven from Southern Ontario to Manitoba, to the East Coast provinces, around Lake Erie and on an epic road trip to Louisiana and Texas. Our youngest is not medically cleared for flight so that is an added incentive to travel by land. When we won a trip to Montserrat in an auction, he and I stayed home while my wife and big kids explored the tiny Caribbean island. Of course we really did not stay home. He and I took multiple forms of public transit including an overnight bus trip to get to Sesame Place near Philadelphia. Before COVID was an ever present reality, my daughter and I traveled to Chengdu, China thanks to Make-a-Wish so that she could volunteer at a panda reserve for a day (there are definite perks to being disabled). We will continue to dream and plan our next adventures as we fill our buckets and photo albums.

Raising children with significant physical disabilities does not come without obstacles. I do not drive and so we rely solely on public transit while my wife is at work. Small steps, unshovelled sidewalks, garbage cans blocking our path all make our travels more frustrating than they really need to be. Working through the bureaucracy of having the school playground shovelled so that it was accessible to my daughter and her powerchair was mind blowing. In the end my sad girl asked me to please come to the school and shovel it for her so that she was not forced to sit inside at the office during recess. I did, and I did it again and I did it again because my little girl needed to know that I had her back no matter what.

The demands of raising any child are significant. My children are never going to grow up and move out. Every time a child with a shared diagnosis dies at a young age I remain thankful that my baby is now 26 year old. Respite is an important part of parenting, or so they say. Before COVID we had planned respite for our children once night a month. 2 personal support workers (PSWs) and a nurse would come to our house to care for the children for 6 glorious hours at a cost of about $120/hour paid for through our provincial health plan. It was an imperfect system of unfilled shifts and last minute cancellations. But having an evening to eat out together and run errands without our children was a nice luxury. It has been over a year since we have had anyone in our house and we will be rethinking what respite may look like when it is safe to restart. Raising children with inconsistent sleep patterns, high energy and a need for constant supervision really does mean that we need a few hours to ourselves.

At this time we continue to shelter our children from COVID19. We closed our doors March 12, 2020 and have not reopened them. If COVID enters our home it will have devastating effects. We have no ability to distance ourselves from each other so respiratory viruses pass easily. Any respiratory virus is a risk to my boys, especially my little man. Even a simple cold leaves him needing oxygen support, completely reliant of being tube fed, and needing around the clock breathing treatments. It often also triggers seizures that can last over an hour. We have watched as the first wave of COVID came and subsided and then the second and now we watch the race between a third wave and the vaccines. We have not changed our behaviour since the first lockdown in Ontario in March 2020. My wife leaves once a week to enter one store to purchase groceries and any other supplies, we go for walks at non-peak times and we play on our driveway. Our lives have been paused for over a year now. We will not be able to safely resume social activities until our youngest can safely be vaccinated in another 8-12 months. While my boys are most likely to suffer severe consequences from a COVID19 infection, the current provincial triage protocol should medical care become stressed has not been lost on us. If there are not enough hospital or ICU beds, my children will be the first to be offered comfort care only. What that means is that they will be sedated so that they do not suffer but will not be given life saving treatments. If my adult children were to be hospitalized for any reason, with current COVID protocols in place, I may not be able to be with them in the hospital. Imagine me dropping my 26 year old off at an ER and not knowing if I would ever see him again. He is profoundly disabled and requires the care of a 10 month old. The thoughts are profound and could easily spiral if I allow them to.

Tonight I dream about a day when we can safely travel, explore our community and visit dear friends/family. I hope that one day our travels will be easier because the world will be more accessible. More places have ramped entries so that we can physically share space with others but we need to keep pushing for greater accessibility. If you want to invite my family in to your home or business we need a ramp. But then we also need a large enough space to maneuver once inside, a bathroom with plenty of space and a solid surface that can hold the weight of a large adult for personal care. We need the attitudes of those around us to reflect inclusion once we are able to share space. My children communicate loudly and often with squeals of delight. We may have loud meltdowns, we may deal with a seizure, provide tube feeding or medication and these all need to be okay. If you see us out some place please include us. It is okay to not know how to do it, we can show you how.

Tara F.

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Hi, I'm Stacey.
Welcome to the
Willowjak Blog 

My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. We chat about themes that are often ignored and voices that aren't often given a chance at the mic. Now it's my favourite place to be. 

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