Our Story & Our Need
I have tried to do my best as a parent, step mom, and a wife and a teacher for the past 11 years. I am currently divorced. I fought the system when they wanted me to go on welfare and look after Khyra. I believed that I should continue to work, support my family and model work ethic to my children. They suggested institutionalizing her; I never believe a child is better off not living with their family. I believed it was healthier for me to have something of my own besides staying home to care give if I was going to succeed. This was not an easy battle, Khyra was a grey area and supports were not in place in the community for her. The Bear Care business was key in enabling our system to work with us, and my inability to give up on my belief that Khyra deserves a life like any other child, and so does her family. Khyras’ father was diagnosed with PTSD not too long after Khyra, and he suffered with chronic depression on and off. My children all had their own battles to work through; parents who were very preoccupied with a sick sibling, the fear of their sister dying constantly, bullying at school, depression and anger. However, they were always happy for respite family time and we ensured that every supper we spent as a family. The kids had to adjust to protocols for illness and handwashing in the house, isagel, facemasks when sick. They grew up with hospital equipment around the house at all times. Nurses, PT, OT, Nutrition, Respirologists, etc. all being part of our monthly routines. We had given up all our pets from the farm, dogs, cats, chickens, lizards, rabbits, etc.; because we couldn’t have them with Khyra. We couldn’t travel because we had to be close to Khyra. We creatively camped with our kids out at my parents’ lot, where my dad had power hooked up, water supply for us and a septic tank.
Both Khyras’ father and I were able to continue in our careers through strong advocating with ministers and deputy ministers to ensure we had the support to live as close to a normal life as possible. When he left, I dated, and met Caldon, who has been a wonderful addition to our family. Tyler went through a severe depression and quit University twice, couldn’t get out of bed, and wouldn’t eat. Finally, I was able to create a support system that enabled him to get back on his feet and start school again at SIAST. Justin, my eldest, was struggling with the loss of a friend, he was struggling with all the trauma from his family unit falling apart, and his coping strategies would cause me to worry. I felt if he was able to distance himself from the chaos he might be able to cope better, so he moved out in March of 2014. He was hurt, I think, at first, however, in the end, it was good for him. He is just completing his degree, he has obtained a job he loves, working in the field of computers, and seems to be happier. He joins us for supper every Thursday. All the kids took to Caldon, they like him and he accepts Khyra and helps with her care. We have struggled with going through his divorce, custody issues and he lost his job in October 2014. He has successfully taken some education to help him obtain employment; however, stability hasn’t been established in this domain. Life in general, has been stressful for all of us. Caldon has three kids and we see the two that live close every second weekend, one lives in Calgary, and we aren’t able to get up there as often as we would like to. We also get the girls, Bailey and Rachel, Caldons’ girls, for a month throughout the summer.
This summer, however, they spent a lot of that time with their aunties and cousins. I still see the girls, DJ and Logan as much as I can. Ivy, their mom, has been wonderful in supporting our relationship. This year, however, I have fallen sick. Apparently long term chronic stress increases cortisol levels, which competes with progesterone. Without progesterone to compliment it, estrogen may become the dominant hormone, and it can also affect your hippocampus ( which is in charge of memory) the symptoms it caused me was mood swings, depression, extremely painful PMS, irregular menstrual cycle, heavy bleeding, fatigue, skin trouble, brittle nails, dry cracked skin, anxiety, foggy thinking, a few headaches, insomnia and memory issues. Most recently, my body has decided that even if I think I can handle all the stressors in my life, it can’t. In May, 2015, my body decided that it was going to go into crisis with any kind of stressor. My whole body is filled with tremors for a few hours, my heart rate increases, and my voice becomes scarce. I work with youth at risk, so in my workplace, stressors are an all-day event that I’m quite accustomed to. However, in May, I had to leave my place of employment and seek help. It felt terrible to have my independence and ability to work, out of my control. I was still attending work as much as possible, and thank goodness that my employers are amazingly supportive. I applied for a paid leave, thinking that maybe if I was home with Khyra and maybe taking U of R classes in Ed Psychology that I may be able to juggle all the medical appointments and my health better. They agreed to a leave without pay. This doesn’t work, however, it was very nice of them to offer this. Next, I sought out two psychologists, and a family doctor. I often would just run to a mediclinic, no time to see a family doctor regularly, too busy tending to all Khyra’s appointments:) I discovered I needed to practice self care.
I am currently on hormone therapy, taking progesterone, and would like to find the time to see a neuropathologist and try mindfulness therapy, AND continue employment- I love contributing to society and it makes me feel good. They basically told me that it’s like I have to take the oxygen mask and put it on me for a while instead of everyone else, or else I won’t be able to keep going, working, or caring for my family. I need to get my masters because financially we need the increase in income, and emotionally/physically, I might need to (eventually) switch to a job that requires less stress than what I’m currently doing. I love my job, and the work I do, so I will keep at it as long as I can, and as long as I feel like I’m delivering quality to my clients. It’s hard to reduce stressors because I love the people in my life and don’t want to let any of them go. Khyra needs to be with her family in her last years, Caldon is a great man, he is just going through a rough patch, Tyler needs me, and I’m very good at my job – my clients need me too:). My mom also fell ill this year and was hospitalized for Delusional Disorder. She is medicated now, however family needs to ensure she is on track. I am her only support in the city and she has required a lot of support since her medical crisis. I try to have a family supper every Thursday, and a visit with dad every Sunday. My parents divorced almost at the same time as I did, so they both are still adjusting as well. My caregivers have been working for $14/hour and need more money in order for me to keep them on-board. They are so dedicated to Khyra that they have stayed with us out of commitment and love, and not because I pay well:) A health plan is needed by one of my caregivers. I increased their pay to $16, which reduces my hours; however, I needed to do something. I’ve sought out supports the past year with cognitive disability, Home care, Wascana, Hopes Home, only to wind up with exactly what I have to work with. I’m trying to sell a small getaway cottage I bought, this was a place for me to have a time out, to be able to sleep at night (I can’t sleep well with people up in the house at all hours). However, the market is not great and it hasn’t sold. I’m working on getting my house fixed up to put on the market. What I need is funding to support the medical needs in the home, so I can be a mom for Khyras last bit of time with me, and so I can get better. I have been doing this for 12 years, and I am now swallowing my pride and asking for help. I have created this website so that I can give back as well. Justin and Tyler have created this site, and secured the name and domain for me to do this. I want to use this site in a few ways. Help support my daughter through her last bit of time with caregivers to meet her medical needs, help support me to be able to support her and my family- I would like to be able to work 3-4 days a week so that I can take her to bone specialists in Toronto or Alberta, I would like to go see some professionals to help my health, and to maintain the website to be used for educational purposes and support for families. December (DJ) and Logan are quite excited to be a part of this too. They have struggled and learned a lot throughout the years and a sibling support blog will be part of this website to help siblings have a place to go to support each other. I want to be able to provide families with disabilities resources and strategies, and Universities to be able to access strategies to help in the practice on inclusion. This is a whole other battle we have faced over the past 11 years. Khyra has attended 4 schools. She is now attending a school that is on the other end of the city, when I have 3 schools in walking distance from my home. My goal is to put 95% of funds received to Bear Care for supports for Khyra and the other 5% of funds will go to the maintenance and development of this website. I also want it to be a place for my children to share their story. They each have strength and resilience, that which humbles me everyday. They are the most considerate, loving, children I know. I’m hoping they will be able to share their stories, and hopefully do some healing through the process. Their story is truly amazing; it counts, it matters, and by sharing it, perhaps our supporting system could understand the long term consequences of letting families fall through the cracks. We are strong and won’t give up. FURTHER UPDATES WILL BE ADDED IN BLOG FORMAT…
Our mandate is to “MAKE IT COUNT!” everything we do in life has meaning and purpose, Khyra is here, smiling and living. Her struggles count for something. She has made every moment of my life worth something, it has meaning and I don’t take anything for granted, including being able to work, spend time with my kids, going for a walk, or just having a pet. I want her last time with us to be about her. I want to be a mom, and not just putting every ounce of energy I have into her medical care. My wish is to have support for the medical, and I want to just be a mom. I want the energy to play with her, take her out, and be mom. She needs this and so do I. But I have responsibility to finances, and caring for the rest of my family too, and myself. I am not able to even work in the summer if I need to as there are no supports available to me to help with Khyra. My family has been struggling, and I am very employable, however, not able to obtain the supports I need for Khyra. I am asking for your help to make the next bit of time I have with her count. What does what I’m asking for equate to in terms of dollar figure? Here it goes:
Caregiver expenses : Khyra requires medically trained staff to care for her and meet her medical needs. I try to share my time with 8 children in my life. They have events they want me to attend, I have to get groceries, little things one might take for granted on a day to day basis, we struggle to achieve. I can’t just get Khyra in the car and run to the store, and I’ve tried getting groceries with her–oops, try pushing a wheelchair and a shopping cart at the same time! She seizures, breaks bones easily, is sensitive to weather….and I love her with all my heart.
I have Individualized funding: 8.5 hours at night to sleep, they come in from 12am-8:30am.
UPDATE: I can now have staff come in at 10:30pm on the evenings I work the next day with the funding increase in IF that we advocated for from AUGUST 2015-JANUARY 2016.
With IF funding, I cover payroll to CRA, WC, training hours, training in CPR, (am allowed to cover health plan, however, we still can’t afford it), wages are still below current wages for these services in order to meet our families needed support hours.
I have 42 days of respite at Wascana, I usually book these days to accommodate PD days that Khyra has off and I need to work, or some time in the summer to recover and regroup.
UPDATE: CLD funding, decreased, it’s now less than $300/month
- UPDATE: Medical Support: we now have staff coming in at 10:30 on evenings I work the next morning, this is way better than midnight. I still have to stay up that late on nights I don’t work, even though I have to get up at 8:15am, however, that is not as bad when I’m not working. We have been able to take a few weekends at the cottage to take a break from caregiving. This has been nice. We still went over our budget, however with some of the fundraising, we have been able to feel a slight reprieve from the huge stresses we were experiencing. We are not there yet, nothing seems sustainable yet, but I’m hopeful!
- +A health fund or plan for staff average: $200/month. One of my employees needs dental work done, will cost 1500 in her place of residence, she has not had coverage from bearcare, I would like to be able to reimburse her for this expense as I know she cannot afford it.
- I wish to pay my employees compatible wages to retain them.
- I do not want my daughters last time to be in an institution, I have fought so hard to have her with family.
- I don’t want to have to do the accounting any more, I wish to hire an accountant.
- MAJOR FOCUS RIGHT NOW I wish to have the choice or option to work in the summer if my finance demand it. It’s hard to rely on one income these days, and to be limited to 10 months a year is a challenge! I’ve contacted realtors to get market value of our home to see if we can sell just to get the equity out. We are trying to survive on one income right now, and we are not making it work:(
- I wish to have hours covered to continue in my education, to enable my wage to meet my needs.
- UPDATE: A service provider was covered from January-February, to take Khyra for a shower once a week. We got her shower chair in now, and we installed the wheelchair accessible shower. Still trying to get the Shower install covered. Thank you
- A service provider to help with appointments- ie. blood work, admissions, pick up medical supplies, etc.
- A service provider to take Khyra out for educational activities or to work with her on her communication skills, using Proloquo.
- I wish there was a respite bed available to Khyra for some weekends to allow for a break without having staff in the home, and for this respite to not be more work to prepare than the respite is worth. Admission process and packing this young lady is a lot of work:)lol
- I wish that duraline company wasn’t limited on soaker pads and wipes, our staff run out monthly due to the ridiculous limits on these supplies for Khyra as a result of one person trying to sell them on internet, all families are paying the price.
- I wish to have the freedom to go for a walk, run to the store; to have the freedom that most parents would have with a child this age, and still be able to have my daughter at home with me where she belongs:)
- Household accommodations: UPDATE: DONE! Just need to see if we can be covered for this somehow. The bathroom needed a wheelchair accessible shower to accommodate her osteoporosis.
- If we need to sell the house for financial supports, so that I may work less days and spend some time going to medical appointments etc. We will need to adapt new living quarters to meet Khyras needs. We would be downsizing, hence freeing up some needed finances and time.
- Travel to specialists.