Category Archives: beckwith-weidemann syndrome

to you, my sisters who have sons or daughters with disabilities

A Trip To Yemen………………………..edited by myself (original by Emily Perl Kingley)

Asalaamu alaikum sisters. I am often asked to describe the experience of raising a daughter with a disability – to try to help others who have not shared that unique experience to understand it, to imagine how it would feel inshaAllah. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip to Saudi. You buy a bunch of guide books and make your wonderful plans… Mecca, the sea front of Jeddah, the huge masjids. You may learn some handy phrases in Saudi dialect. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Yemen!” “Yemen?” you say. “What do you mean, Yemen? I signed up for Saudi. I’m supposed to be in Saudi. All my life I’ve dreamed of going to Saudi.” But there’s been a change in the flight plan. They’ve landed in Yemen and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of fitna, arrogance, and unfamiliarity. It’s just a different place.
So, you must go out and buy new books. And you must learn Yemeni arabic. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Saudi, less flashy than Saudi.
But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Yemen has mountains. Yemen has the sea. And Yemen even has purple chickens (yes – they have coloured baby chickens in the souk in old sanaa, trust me on this inshaAllah). But everyone you know is busy coming and going from Saudi, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever go away. The loss of that dream is a very significant loss, and yes, there are nights you cry and some days you feel overwhelmed.
But if you spend your life mourning the fact that you didn’t get to Saudi, you may never be free to enjoy the very special, the very lovely things about Yemen. So you stand back, find strength to increase your eman, and say “Alhamdulillah. I am in Yemen.”


Filed under beckwith-weidemann syndrome, daughter, health, reflection, religion, spastic diplegia cerebral palsy

Mothers of medically fragile children support group

Asalaamu alaikum,
So this is my current project, to make a support group for women of children who are medically fragile/technilogically dependant. It will be for mothers and their children, most of preschool age inshaAllah. I started this because there is no such group where I live. I just posted about it on a community bulletin yesterday and it already garnered the attention of CBC radio. Im considering doing an interview with them sometime in the near future, Im just waiting to hear back from them now inshaAllah. If anyone has any ideas to make this a further success, please leave a comment, thanks!

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Filed under beckwith-weidemann syndrome, daughter, extracurriculars, group, medically fragile, spastic diplegia cerebral palsy

no homeschools, only hospitals

Asalaamu alikum,
Okay so as you may have noticed, there have not been too many posts involving my sons hs. The reason for this is all of the time we have been spending at the hospital with my dd who has beckwith-weidemann syndrome. Macroglossia is part of this syndrome and so her tongue blocks her airway and she has a tracheostomy. Long story short, we just arrived home from seeing her surgeon and ENT and her surgery for a tongue reduction is booked for January inshaAllah. At that time, a different ENT will come in and place tubes in her ears as she currently has full conductive hearing loss alhamdulillah. Please make duaa for her. InshaAllah my mother will be coming to help us. Ds doesnt mind the hospital so much as they have playrooms and he always has soo much to keep him busy from crafts to nintendo and on and on alhamdulillah. He is as patient as a 4 year old boy could be mashaAllah, Allah has blessed us.

In other news, she has learned the sign for “more” and “no”….

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Filed under affliction, ajer, beckwith-weidemann syndrome, daughter, hearing loss, tongue reduction, tracheostomy