There is a saying when it comes to people with disabilities and making accommodations for them.“Nothing about us without us.” What this means is when something in society causes a person with a disability to be excluded, those people trying to make the accommodations should consider
Dreams, hopes and expectations; we all have them. But we also have disappointments, tragedies, and pain, don’t we? We know that God is a giver of good gifts and He is continually surprising our family and blessing us in unexpected ways. Here are our family updates…
It’s not every day I get to speak about disability ministry and perhaps my nerves kept me from saying a few things I thought I could have.
I firmly believe ALL people belong in the Church, the community of believers, the fellowship, the Body of Christ. However without going out and inviting such persons and their families,
I think once we remove the word “tolerant”, only then can we truly love as Jesus loves. If we ever find ourselves annoyed by, “disruptions”, who happen to be people, we ought to look inward first. Otherwise we will only see such a, “disruption” as something to be removed, when what must be removed is ones own entitled heart attitude.
Let’s face it, disabilities are hard. Caring for my daughters who have tuberous sclerosis complex, epilepsy, autism and global developmental delay, is exhausting. I want them to be whole of course, but who am I to judge that their spiritual condition is not already whole in spite of the physical and cognitive limitations they possess?
Last week I began to get discouraged again, as it seemed Annie was once again having seizures, and was lethargic and aggressive at times. It seems once we get her settled on a new drug or dose, she is good for a few weeks and then bam, downhill we go and we are troubleshooting TSC again.
(In Honour of March 26, Wear Purple for Epilepsy Day) January 2004 – My twin baby girls were 5 months old.
I bit my lip hard in an effort not to cry. No one in that room knew that Annie was an identical twin. Nobody knew about Audrey, our other baby at home.
The looks of shock on the medical team’s faces
“This is what they do in Canada!” As a young Dutch immigrant my mom was thrilled with trick or treating. Treats were few in their home and a meal often consisted of bacon fat poured over potatoes. Halloween was not celebrated in Holland and the trick or treating custom was fully embraced by my mom and her siblings. And they were good, Christian kids.
Ten years ago, my twins were entering this world. We expected them with great anticipation and after many ultrasounds, and some concern about their size difference, the moment had finally arrived. Our baby girls made their entrance and all seemed perfect.
We expected no less.
I would like to say it was magical
The jack hammer pounded the garage floor all day. Periodically, a saw blade screeched and the jack hammer took a brief rest. Next, the old floor was broken up and carried away by the bucket full, into the trailer and then driven to the landscape place and tossed into the awaiting pile. Saw, jack hammer, gather, fill, load, drive, unload, and drive back. It was back-breaking,
The Neurologist slid a piece of paper across table containing information about what could happen to Annie. Hearing that TSC was a disorder with a broad spectrum of how it affects an individual meant that there was hope that Annie would be normal if she were to be at the mild end of the spectrum. I was shaken but hopeful, and no doubt in denial.