Wednesday, July 6, 2011

Wacky Wednesday

I find myself at a crossroads, panic stricken, not knowing which way to go first. I've been with Anaya all morning. She awoke choking, screaming with the intensity of clearing her throat. The medicines we give her to control her secretions seem to be losing their effect and she has been so wet. The suction machine is our constant companion, and we often have to empty the canister several times a day. Brent was here to help me this morning and we started by giving her atropine to dry her up.

Preparing to visit my friend Ellen (who lost her beautiful son Sebastian a while back), I dressed Anaya in a beautiful white dress. The atropine kicked in and she dried up. She also became a bit sleepy, which is an unfortunate side effect of the atropine. Nurse D showed up and we walked Anaya down to the OSO Negro. A fabulous garden orientated Nelson Coffee Cafe.

Pulling my strength around my being I stood a bit taller and pushed Anaya through the throng of people. Everyone is curious. Everyone looks at Anaya. Everyone looks at me. I smile and stand in line with Ellen and Nurse D. There always seems to be the lingering question in the air, just hanging around us.

What's wrong with her? What's wrong with her? What's wrong with her?

It echos in the stillness that swirls around us as people stop conversing to look.

Curiosity, judgement, observance. I wonder what it would be like if everyone could feel each others emotions. Anaya certainly reacts to people's feelings. In fact I have found that she often has a harder time around large groups of people. By harder time, I mean a harder time breathing. Standing in line just then she began yawning, her lips turning dusky and then purple. I bent towards her head, lowered my lips to hers and gave her a small puff of air. She sighed and regained her rhythm, returning to pink. Intent on her I watch her chest rise and fall, listen to her sounds and smell her sweet baby scent.
"Excuse me." I hear a woman call, "would you like to order?"
I had forgotten that I was at the head of the line. "Yes please, I'll have an iced coffee please, and an breakfast muffin." I fumbled my wallet out of my purse, dropping receipts, and a hair clip onto the ground. Bending to get them my back tightens and I am reminded that I need to stretch it more.

Taking Anaya out to sit in the garden with Nurse D and Ellen I am approached by a beautiful little girl who looks at my baby with pure innocence and curiosity. Her mom speaks to me with kind regard, and I am touched by their presence in the moment. I hope to see them again.

My back tightens again as I sit down and suddenly I know with a certainty that I have to move. Literally. I need a new place to live. Carrying Anaya up and down the stairs in my house

has become dangerous - the nurses are not allowed to do it and therefore I have to. The nurses are also not allowed to bathe her in the bathtub because it might hurt their backs, so I do it. I love bathing with her. It's just so awkward getting her in and out. She's slippery like an oily noodle wrapped loosely around a spoon. One of my biggest fears is having her slide out of my arms and that when I try to catch her from falling, I grab her arms and dislocate her shoulders. It's a very frightening thought for me. I never want to cause my angel pain.

Sitting in the partial shade at OSO I realized that I need to start looking for a place that is wheel chair accessible and that has a handicap bathroom with room for a special table, tub and lift. I know in my heart that Anaya will be here for a while and that we need to accommodate for her needs. I decided then and there that I would start working on it today.

So we walked down to the Nelson Cares Society - which is supposed to know about accessible housing. I found out that they do not provide services to children and I was given a number to call. I was also told that finding housing in Nelson suitable for a child with special needs like Anaya's is next to impossible.

That's when the panic attack hit me. I called the number. The voicemail box you have reached no longer exists. Holy Shit. The heat hit me, my heart constricted and Anaya started turning dusky again. Pushing down my panic I give her another puff of air and ask the woman behind the desk for some water. Pulling out the small syringe I carry in my purse I gave Anaya a drop of water on her tongue. It seemed to refresh her. One drop at a time. Cool giving drop at a time.
I drank a glass too. Deep breath. A thought comes to me from out of nowhere.

Maybe there's something somewhere. Maybe if I get the word out there will be someone who knows of a place. Maybe if nothing exists for Anaya now, it could be built. We need a level space with either an elevator or a ramp, with full bathroom and bedrooms on the main floor. It needs to have a minimum of two bedrooms, with the optimal number being three. There needs to be a large handicapped bathroom that has room for a lift or a special bathtub.

Ok. Now I need help finding it. Readers, any suggestions?


  1. I am sitting here trying to come up with something for you to do. Have you tried calling a real estate agent? I'm sure one would be more than willing to at least help you look for a home which is more accessable for Anaya and yourself. I hope this helps.

  2. If you find a home that is one level you could inquire about RRAP loans.
    I do not know what is in BC but in and around Calgary there are a lot of options to look into if relocation is an option for you

  3. Could there be a way, at least for the immediate, to install a ceiling track lift it the bathroom to help with the bath? Or there are mechanical lifts on wheels and the same lifter sling can be used on both the ceiling or portable lift.
    These aren't cheap, and I know little about funding for these off hand, but maybe something like this could help you not have to move again right now?
    Just a thought.

  4. I agree. Call a realtor. Call many realtors. Explain the situation and see what they can recommend, even if they can't help you themselves. Call the children's hospital, library for lists of charities that may be of assistance and such.

    In the meantime, can you convert a downstairs room into a bedroom for her? Or do you need to sleep nearby? For bathing, what about a portable/foldable tub for the downstairs?

  5. Contact the media about your need!! If I could afford to I would build you a house in a heartbeat!!

  6. check with the government. with certain disabilities and conditions they cover a ceiling track /lift being out in once. you wouldnt need a new tub or larger bathroom for that, and the sling lifts can be used to lift her right from the chair. and i agree with the person that suggested contacting the media asking for assistance. you would be able to get contacts that should help even if you dont want to ask for financial help. the stairs could be fixed up with a lift that you could put her stroller on to and then use a hand control to guide up and down the stairs similar to the lifts for wheelchair access in vans, but set up to go from the top of the stairs to the bottom and back.

  7. hi, i have read your blog several times. words cannot express how i feel when i read about you and your beautiful baby girl, Anaya. For several months last year, my baby (then 9 months old) was being evaluated for various genetic diseases and neuromuscular disorders. Those few months were excruciating for me to say the least. At the end, my baby ended up without a serious diagnosis and i counted my lucky stars every single day since then. Your story is one of strength and of how incredible the love of mother can be in healing a sick child. My husband is a journalist for CBC TV news and I will ask him to speak to his colleagues in the Vancouver bureau about a story about you and Anaya and your mission to find a suitable place for your family to live...if you are interested! The media can be a powerful tool in these situations. Please let me know through this blog.

  8. A good place to start might be the BC Housing Registry (just g**gle them). They maintain a list of various housing providers throughout the province and may be able to point you in the right direction. You should be elgible for the At Home Program - if you have not connected with them yet, your local public health unit should be able to get you started. Are you in contact with Early Childhood Development in Nelson... Not sure what it is called in your area, but Supported Child Development and Family Support Services (funded through CLBC and MCFD) have done incredible things for my son (we are on the Sunshine Coast, 90 km from Van.)

    While it sounds as simple as making a phone call or two, sending this person and that person an email, filling out those forms, making copies of these documents .... it is rarely that easy. Parents like Camara and myself spend many, many hours on the phone, advocating, pleading, insisting ad. nauseum for the bare minimum our children need to maintain a passable standard of living. Perhaps there is someone close buy who could step into that role, researching, contacting, documenting on behalf of Camara and her wee one .....

    I have a young son with numerous physiological, neurological, and behavior anomalies - his life span is uncertain. We came very close to losing him in March as a result of his brains failure to coordinate respiratory and cardiac function. While you and I may not wear the same shoes, I am travelling a similar path.

  9. Do you get any help from the ministry? If not maybe try to apply for some assistance. If there is a medical supplies/ home health care store in Nelson usually they can apply to the ministry for equipment on your behalf. There could be little or no cost to you, so long as a doctor prescribes this equipment for Anaya. As well have you contacted your Health unit or community care office? they have people that come and assess your home for safety and may be able to help as well. Here's som numbers so you don't have to research. I think of you and Anaya every day & I dont't even know you. I read your story in The Province and have been following it ever since. I balled my eyes out. My daughter was born with a rare lung defect and had to have a lobe of her lung removed to survive & going through that & can't imagine what you go through every day. Your outlook, devotion and positivity is an inspiration. You are a very special lady. I hope this helps

    Variety Club Children's Charity Toll-free: (800) 381-2040

    BC Association for Individualized Technology and Supports for People with Disabilities
    & respiratory Outreach Program:
    Provides a comprehensive range of equipment and supplies, respiratory therapy, education and peer group support to physically disabled clients across the province.
    Toll-free: (866) 326-1245

    Tetra Society Custom assistve devices
    Provides assistive equipment to help people with severe disabilities live independently, specifically communication devices and the ability to control devices in the home.
    Toll-free: (877) 688-8762

    At Home Program Medical Benefits
    Provides basic medical benefits for children and youth with severe disabilities.
    Toll-free: (888) 613-3232

    Personal Supports Information Line
    Provides a toll-free information line for information about government programs providing equipment and assistive aids
    Toll-free: (888) 818-1211

    Nelson Community Services:


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