Tuesday, 20 October 2015

This is where the rubber meets the road

"You must be excited to be going home" is almost the same as "are the kids excited for school to start". It really is the kind of thing that someone would say who has not really given it much thought, or they are just looking for something to say. Kids are NEVER excited to go back to school, who would be? Why would you ever want summer vacation to end? Leaving Parkwood is not the same as starting school, but the analogy of these statements fits. Think about it - this is going to be an emotional time, a new routine to establish and a major time of adjustment.

Don't get me wrong here, I am looking forward to going home and getting away from here. To the peace and quiet of our Tiny Farm, to be a family again and eat real food. But. And that is a big but, because things are not ending here, they are just beginning. This is where I will see if I can do what I have learned here at Parkwood. Sure, I have been "independent" as a patient for a while, but there was always a call-bell nearby, and a nurse or therapist to help me out. I could pull a curtain and shut out the world. This is where I will see if I am able to reduce the number of infections that I have to fight and patient enough with my bowel care to not have accidents. Can I force my body to get stronger and will I be able to wake up more motor activity? How am I going to be able to slow down my drive so I don't constantly overdo. Am I patient enough to ...survive?  Leaving Parkwood is not the end, this is just the beginning.

Some of my friends have said that they have not been able to help out as much as they would have liked to - my response is that this is a long road. We will need help. And we will be asking for it. We will need help with things that we don't even know we need help with. I can't walk, can't stand, can't move my legs except if I lift them with my arms! Everything at home and in life is going to be different. Until we get our feet on the ground (I say stupid shit like that all the time) and learn about our new life, we won't know what to ask for. Things I do know: we will need help with meals, help to get to appointments and get groceries, help with my therapy and time to just be "normal". Although I have come to realize that there is no such thing as normal anymore.

Here are some of the facts about my return home:
  1. I come home to TFB on Thursday afternoon, after PT and my wheelchair fitting. Theo is picking up me and all my stuff. 
  2. The house is ready enough. We will be making only minor changes until we know if we are moving or building a new house. This decision will not be made for some time (insurance and legal actions pending).
  3. Our bedroom is in the dining room, with a new bed being delivered tomorrow. 
  4. I hope to bring home a wheelchair that will have a front wheel that will attach to make it more "off road" capable. 
  5. We have purchased some equipment, and rented other pieces of equipment until we know what works. 
  6. I will not be driving with hand controls until I get assessed and trained (starts mid-November) and we buy a new car.
  7. I have decided to go to Parkwood for robotic therapy (FES bike and Lokomat) one day each week for 12 weeks.
  8. I have not decided where I will be doing therapy, otherwise. I need to talk to the prospects in person.
  9. We likely will hire a PSW and a house cleaner. 
  10. The ramp is done. 
  11. We have an appointment every day the first week I am at home. 
Are we ready? No. Do we have a choice but to manage? No. Lots of people have said to me "I would never have been able to do what you are doing - you are so strong". Although I try to take it as a complement, I don't believe them. If you were in my shoes, you would do the same. You would not give up, you would not give anything but your best. So now we will be doing that as a family, giving our best. That will be hard, we will not be at our best all the time, no one is.

This is where our new life begins. I am sorry that this has happened to Theo and my two wonderful children. But we will figure things out, one hurdle at a time. This is where the rubber meets the road.
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9 comments:

  1. Lisa B. Pot20 October 2015 at 20:43

    "Am I patient enough to...survive". I often read about people needing the will, or having to fight, to survive. But being patient to survive. New thought.

    You are teaching us so much...teacher! Thank you. Count me in as one of the ones who wants to help. I make a mean curry rice dish with pork chops!

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  2. Unknown20 October 2015 at 20:54

    So many unknowns - I hope the first week goes well, that you soak in the 'normal' family moments you've missed and that you are kind and patient with yourself. Wondering how that feeling in your chest is, Julie? I have had struggles with anxiety (started postpartum Craig and I was NOT impressed when my husband and family suggested I might need 'help'). Just wanted to tell you that I had no idea that my own feelings at times of being unable to control things, or dealing with times of stress could sometimes manifest in physical ways (everything from rashes to feeling shaky or severe headaches). I hope that awful chest tension has disapated and that you sleep well at home in your new bed. Reading always, but haven't posted in a while. Glad the first major hurdle - getting back to real life after the past 3 months of treatment - has finally passed.

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  3. Unknown21 October 2015 at 06:23

    Knowing it will not be "easy" returning home know that you have many people supporting you, cheering for you, and wishing you the "easiest" return home (family friends, and community members). Enjoy the small moments and be patient. Hoping the new "normal" comes to you with ease. My heart is with you.

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  4. Ernest Dow21 October 2015 at 08:34

    Praying for you and your family as you transition, and adapt creatively to this new reality. Your indomitable spirit is helping carry you forward.

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  5. susayoun21 October 2015 at 09:17

    Take care, and thanks for posting as I was wondering how things were going as your HOME date was approaching. Your list looks sensible (knowing how you like lists now!) and I echo the thoughts of those above.

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  6. Unknown21 October 2015 at 11:23

    Julie, unfortunately I have come down with a wicked cold and have been unable to be there the last few days. You have done an amazing job learning, questioning, and taking back control of your life. Keep fighting for that control and moving forward. Just because your time as a Parkwood Inpatient has come to an end does not mean your journey has ended. Only moved onto the next chapter. Best of luck in the future, and remember, You Got This!!!

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  7. Unknown21 October 2015 at 12:01

    I think what makes you stronger is how thoroughly you think everything through and how intelligent your response to all this has been. That must take an enormous amount of energy. Thank you for sharing what you learn. Wishing patience.

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  8. Unknown21 October 2015 at 12:14

    In Judy's and my past we have gone through this alot. You are approaching this the right way. Try things see what works. Execise your legs as it does help with bowel control. At least that is what my clients used to tell me.

    For vehicle modifications you can contact "Sparrow Hawk". This company is located in Kitchener. They are now owned by Shoppers Home Health Care. They do very nice vehicle modifications taking into account what will work best for you. My contacts there were either Mark or David.

    Judy and I think of you often and read your blog regularly.

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  9. Justine 3327 October 2015 at 18:22

    I cannot believe all this has happened. You have a wonderful spirit. I think about you a lot since I have heard this summer. I was so glad I met you at the Case Study workshop. I loved your case. My thoughts a prayers are with you. I hope this next chapter will continue to get better with the support of your family nearby.

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