“Having a child with complex medical needs was one of the best things that ever happened to me.”
PLEASE CHECK OUT PILOT PROJECT AT THE END OF THE PAGE!!!!
Well it’s true! Things that I used to complain about, I feel are such trivial issues now. I watched this little girl fight for every day she had to live, and she still woke up with a smile and ready to take on the new day! Complaining took on a whole new meaning for me. I started to live each day as if it was the last we would have with our daughter. Every decision I made, I made with consideration to whether I would ever have any regrets in the future. It became a way of living for me. When you aren’t sure how long your daughter will live, you want to ensure to make the best of each day and each moment:) I became a doer, realizing that when we just talk about things, nothing really changes… don’t get me wrong, I’m aware that talking is part of the brainstorming and planning process, however, if it never moves on from this stage, it’s just talk, and nothing changes. This way of life for me has been a game changer. There are many models for creating change, here are a few a came across…
The benefits are that I’ve become very good at initiating and creating change. The downfall to this is that it can tire a person out if you don’t set reasonable limits. I’m learning a balance is needed! And things don’t always happen overnight. Change takes TIME! One of the most challenging things I’ve learned is that sometimes you will stand alone when you are trying to create change. Many people RESIST change, or are scared to “rock the boat”. I am not assuming that my views are always right, nor are they wrong. They may be different, and different can be intimidating. I’m proud to say that the things I’ve stood up for, such as inclusive education, and trying to ensure families still had a life, while caregiving for a complex medical needs child, have started to see some movement in our community after 12 years. When I say starting, I mean starting… Hopes Home was a great resource for our community and has grown significantly since Khyra attended the first year it started. I’ve reacquainted with some teacher colleagues who are now more willing to try practicing inclusive education, where a few years ago they may have been a bit hesitant on inclusive education in the schools. When I speak of Inclusion, I mean having all students needs met in a classroom, regardless of disabilities or challenges. A classroom where students work alongside peers their own age, rather than secluding them in special programs and classrooms. Thinking outside the box can be challenging sometimes. Telling a teacher it’s ok to have this child work on math on an IPad while the rest of the kids are doing pencil and paper work, is not always an easy sell. Individualised programming also requires more planning and often more resources. Seeing some educators trying this inclusive practice, even for a year, is a small step to change, and a significant reward for this lady who likes to promote inclusive education! Khyra is 12 years old, and has moved schools more times than I wish to share, and it was not because we were unstable, we have lived in the same house since she started school. It was a result of schools not being able to adapt to the needs of Khyra. This was likely a result of a lack of resources, or even a lack of vision. I have seen some change in this area, however, as a parent, it is one of the most frustrating endeavors I’ve had to encounter, especially being an educator myself. BUT, it has taught me about change, and the change process. It has taught me patience. It has taught me that we aren’t going to change the world overnight, but the small changes we start to see are to be embraced and celebrated!
You might still be wondering about my statement that having a child with complex medical needs is the best thing that could have happened to me… so YES , it has taught me to make each day count, and has taught me about change, and patience, so what else? When I look at the world of people out there, I’m not going to judge, because each person has a story and there’s a reason for why people are unhappy, maybe practising negative coping strategies, and maybe displaying negative behaviours. I’m going to talk about “Empathy“. I listen to people judge one another everyday, I hear harsh words spoken about people who I Identify as struggling. I, myself, have been angry, tired, sad, disappointed, bitter, and frustrated. Why? Because at times it felt impossible to maintain our life and care for Khyra at the same time. When I say maintain our life, I mean sleep, go to work, get groceries, spend time with our other kids. Imagine a ventilator, oximeter, TPN, compressor, suction, meds, all the medical things you would see in an intensive care unit at the hospital, we had at home with Khyra. They have nurses on shift work at the hospital, but what happens when you are at home? You are ON at all times. It’s exhausting, and there is no time for you to get sick yourself when you are caregiving 24/7. You have to fight for care just to sleep at night. I had to fight for care to be able to work. And if you are working, be prepared to really ensure you keep good relations with your employer, because you will miss so much work due to medical appointments and emergencies. Essentially, the expectation was that you didn’t keep your child with complex medical needs, you gave him/her away. I didn’t understand that, as a parent of 4 already, I couldn’t imagine abandoning my family, my child. That’s me, and I don’t judge anyone who has had to make that very hard choice. However, for the first few years, anyone who was around me knew that I was angry, upset, and I wrote letters to any ministry who would accept an email, I called Human Rights, Lawyers, policy people…anyone, to help me to understand why no one could understand our situation. I even applied for the Masters Program surrounding Public Policy, and was accepted- however chose to take Inclusive Education Certificate instead. We were a grey area apparently, it’s like writing the book as you go. I got to learn about our system, how it works, how it doesn’t work, and how to encourage it to work. The reward in all of this is that I have greater empathy for people in general. I can see a person who is angry, hurt, or frustrated, and instead of judging them, I wonder what is going on that is making their world so sad for them.
I am currently going for my Masters in Educational Psychology, and I just think that Khyra has somehow contributed to the journey I’m taking. I’ve watched my family struggle with mental illness due to the severe trauma you experience having a family member with complex medical needs. Depression, PTSD, Anxiety, addictions… these are all real, and part of getting too little sleep, not enough self care and loving someone who is constantly battling one medical scare after another. Khyra has inspired me to be brave, confident, and try and help other families, other children who might need the extra help. Khyra is nonverbal, so I have taken it upon myself to be her voice, to help her share her story, and to ensure other families know they are not alone, and sometimes when we unite we are able to create a stronger community with one another. We also have a better chance at creating change.
“I’m positive that Khyra, a child with complex medical needs, was the best thing that could have happened to me.“
She has taught me strength, resilience, empathy, to live each day to it’s fullest, and I’m humbled to have her in my life!
We are going to be moving on July 1st, however, we are working through a lease agreement that allows us to use SPACE in the house for families in need of a SPACE for Respite. If a family gets respite, a break, it typically happens at Wascana, Hopes Home, or in the child’s home. This means that families have to leave the home to get a break, or it has to be booked months in advance. Not too many family members will have accessibility, so getting family members to babysit can sometimes be challenging. I used to rent a hotel room to sleep when I had respite, which is ridiculous- Just to have some time alone and quiet. The SPACE will be exactly that, it will be accessible to families for a small fee- unless we can fundraise for this, to be determined, and a list of caregivers will be available, but we are not responsible for who you hire, and the respite cost is still your responsibility. It can be someone from our list, which we have used and trust, or a caregiver of your choice who meets the requirements to work in the SPACE. The space is wheelchair accessible and has access to a wheelchair accessible shower. Anyone interested is to CONTACT US to attend a meeting to organize and plan our pilot project. The people we are working with to lease our home are on board and willing to go through any training and checks required to promote a safe SPACE for your children.