Deep confusion as a victory tool
Last year November we received the best news from Juneldè’s neurologist. Her EEG was looking so much better that her current anti-epileptic drugs (AED’s) were too strong and thus not therapeutic anymore. That being said we needed to work out a plan to start a tapered weaning process with her Benzodiazapam (Ativan). Together we decided […]
The first day of school
I didn’t want to write this piece. I don’t want to make anyone feel guilty about their lives and kids and let’s call it by its name – normalcy. But when chatting to a friend I knew it needed to be said. I shared with her that the first day of school every new year […]
To sit in darkness
Today, exactly 5 Years ago our lives changed completely and utterly. Drawing a definitive line between our before and after…Since that day we have slowly learned to walk in darkness. At first the darkness was overwhelming and the need to escape even more so. Most of my days were spent in a desperate push back […]
The most wonderful time of the year…
She is turning 8 years old on Thursday. And I am looking for a gift. I wish she could tell me what she wants, what her interests are, what she dreams about. The reality is that Juneldè is freed from this materialistic life of wants. She lives a life far above anything money can buy. […]
What if?
What if? For a long time I lived by these words. What if the accident never happened? And then the follow up line: “She should have started grade 1 this year” or “She should have been walking, talking, eating, seeing, smiling, laughing”… So many should have been’s and could have been’s stealing my joy […]
The “Please, God” family
I always wanted to be a “please, God” family. You know, those people you look at and silently pray, “please, God make me as happy/ beautiful/ content/ privileged as them. The Pinterest’ and Stock images’ family, almost blinding you with their good fortune. I assumed that that will loudly proclaim God’s care and provision. The […]
Behind every photo
I see myself next to her ICU bed, with protruding tubes and an array of medical interventions, and I see my smile. I remember the despair, shock and utter disbelief in my heart. However the moment the camera is pointed towards me I put on a smile. It is a reflex almost, cultivated through years […]
My pilgrimage to perspective
I love traveling and exploring and was thrilled by the opportunity to visit Jordan and Israel for ten days. What started out as an opportunity to see new places became so much more. It was a pilgrimage to perspective, a journey to find some left behind pieces of myself again… On the first day of […]
During hot water times, be tea…
We all know the analogy of the egg and the carrot in hot water. The egg becomes hard when placed in boiling hot water and the carrot becomes soft and mushy. But during my boiling hot water times I didn’t want to be the egg or the carrot. Becoming hardened did not appeal to me, […]
Being angry at God
For a long time I hid from God. Like Adam and Eve I tried to hide and cover up this burden in my heart, this embarrassing ugly truth. I was angry at God. In a big way… Slowly but surely these feelings took over my thoughts and life. And a new emotion took its place […]
