I never thought we would ever be in a position like this, but life is full of challenges, and some of those require aid in overcoming.
Jacques's permanent residency status here has not been finalized, and as a result she has not been issued an OHIP card yet. For our American family, that is the medical card here in Ontario that allows her access to medical services under our socialized health care system.
Recently Jacque has not been feeling well and as the parents of two and three year old boys, we chalked it up to being run ragged and not getting enough sleep, as this winter had been really tough on the boys while their immune systems develop. Multiple colds, ear infections, strep throat, they have had it all this year and we have too, including the flu and pneumonia.
After another check up, our family doctor told Jacque he suspected an autoimmune disorder as the cause of her recent condition. Within a week of that visit Jacque was hospitalized for 6 days. She was unable to eat or swallow and her weight dropped dangerously low. She also had difficulty with fine motor control and continues to struggle just to perform tasks we all take for granted. Getting dressed, combing hair, reaching into a cupboard, driving, all of these things are now a daily challenge for Jacque. Even eating can exhaust what little energy reserves she has managed to build up overnight. She has been diagnosed with Myasthenia gravis, a chronic autoimmune neuromuscular disease that causes weakness in the skeletal muscles, which are responsible for breathing and moving parts of the body, including the arms and legs.
This is especially tough to take as we are finally at the end of our three year journey as foster parents and are simply waiting for our date in Family Court to sign the legal papers to complete the adoption of Conrad & Orrin.
We have not previously discussed this with everyone, as the Children's Aid Society had regulations against identifying children in care on any type of social media platform, but Conrad was diagnosed with Autism at age 2. Since CAS is now out of the picture we can relay more info about the boys.
The boy's young ages, and Conrad's needs, have meant that Jacque is a stay at home mom and I am the sole provider for our family. Jacque adores her time with the boys and absolutely loves it that way. But it also means that unexpected issues like this can cause havoc with a family budget.
Daycare for Conrad was identified by his pediatrician as critical to his early development and socialization. And they were right, he has grown personally and developmentally in ways we are amazed at. And his younger brother gets the benefit of additional examples of behavioral norms from the toddlers in his class, so that he can see what is appropriate behavior to model. But it also means that the province's move to $15 an hour minimum wage has impacted our daycare fees. Even with a sibling discount the increase was significant for us.
We do not know the extent of the additional testing that will be required prior to her surgery. There are a number of options the specialist has discussed with us and all of them will be as a cash patient until we receive final approval of her application. Hopefully we will hear from Immigration Canada sooner rather than later, but our Doctor is stressing early treatment to stabilize Jacque and get her on the road to recovery. Her physical healing from the surgery itself should be normal, but it takes up to a year to feel the benefits of the removal of her thymus gland. And that is what has lead me here.
Our choices at the moment are to pull the boys out of daycare and limit the continued spending on Conrad's developmental needs until we get this paid off, or to humble myself in a way I could never have imagined and say that I cannot do this alone. We are currently interviewing personal service workers in order to find a qualified one to come in part time and assist Jacque with her needs, in addition to providing supervision of the boys during normal business hours when they are not in daycare. Since I operate a home based business, it is becoming increasingly difficult to find the hours I need to devote to my job, while at the same time raising our boys and supporting and caring for my wife during her illness and recovery.
A full recovery is what we are looking for and her team of doctors have told us that this goal is something that can be accomplished. But first her weight needs to increase and she needs to meet a few other milestones. This has been tough, as she is on a liquid diet of meal replacement supplements and finely pureed soups. Not a whole lot of choices out there and if anyone knows how to pull off a pureed chicken nachos/margarita combo, you'll have a friend for life.
My love for my wife and the family we are building compels me to seek any avenue to try and make the life we have planned with the boys a reality.
We would be eternally grateful for any support.
Chris, Jacque, Conrad & Orrin Sills
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