Jackie's Road to Healing
Donation protected
Dear sister:
People that don't know you, should know you because you are an inspiration. You are the toughest person I know both mentally and physically. You always giggle and find humour in the little things life has to offer and I love this about you. I hope you go to bed tonight knowing that I admire you and look up to you, as the big sister you are to me. I hope this New Year is full of health & happiness.
Message to you:
I was thinking about what I really want for Christmas this year and it is to have a healthy big sister again.
My sister grew up with and still has Hydrocephalus which is a condition in whereby fluid accumulates in the brain. It can cause brain damage. This condition can be treated with a shunt system but still can involve complications. I remember growing up at the Children's Hospital of Eastern Ontario as we were frequent visitors and seeing my parents face the hardships of raising a child that does not have optimal health. CHEO was amazing and provided her with the care and attention to her file she needed.
One day when my sister was older (late teens/early 20's) we brought her to a different local hospital as she was really not feeling well. We advised the staff of this and her medical history. In a nutshell, they did not provide adequate care and it was an insane amount of hours later before she had been seen (and in our opinion not properly diagnosed) whereby my sister had to be rushed for immediate surgery. It turned out she had appendicitis and by that time her appendix had burst.
She finally was released days later and subsequently ended up getting a severe infection from the operation. They butchered her entire body (you have never seen scars like this) trying to remove all the shunt tubing and she had so many surgeries to correct, that she nearly died on the table.
If they only knew the quality of her life since
If they could see it
If they could live it
If they could be in her shoes for a day
They would understand her best day now is everyone else's worst day
She is on so much medication just to feel "normal" she is losing her hair and destroying the inside of her body. That operation left her with such terrible nerve pain damage in her arm and shoulder-blade and she cannot use it without being in so much pain. I must say even with all the pain and hospital visits she kept working on her Nurses Aid program as she so badly wanted to continue work. Though she finished her program, she has since been rejected from this type of employment because she cannot lift routinely anymore. She is 34 now and since the one appendix surgery she has had so many complications that I cannot count the surgeries.
Her latest surgery only a few years ago in August was where it all got worse. Something in her brain got impacted and since she was left with crossed eyes (fully one eye, partially in the other) and lost sensation in her areas of her face like her lips/mouth. She is right now trying to teach herself to fully blink. Due to her eyes, she is not stable (from a walking/standing perspective) so she cannot get employment anywhere as she is a liability. Trust me she has looked! Our dad does so much to help her but I know she could use more help financially. She also has a cat (her companion) which has been really costly because he requires a special diet.
I went to her house the other day and she was cooking on the stovetop, not facing my direction. I heard her sniffling and could tell she was fighting back tears so when she turned around she wouldnt show me and would appear fine. Her pain, is my pain and I cannot believe she must endure this chronic pain and receives barely enough a month to live off of.
What I would like to do with these funds that will improve the quality of my siblings life:
*Purchase and install a special hydrotherapy bathtub for her
-Get her a gym membership to her local gym with a personalized trainer (sessions) that understands her unique health issues, obstacles and challenges and also pay for her aqua-fit classes in support of her strengthening her body
-Get her a new bed and assist with medical supply purchases
-Get her an appointment with a a hair specialist and pay for what treatments can be accommodated with amount raised
-Pay for more holistic alternatives (mind & body) for pain relief (acupuncture, hydrotherapy, reflexology) and pay for sessions
-Use money to assist with an online meal plan subscription - purchasing healthier groceries to accommodate with personal trainer goals
-Use some money towards transportation to these items above (she does not live super close to these items - walking distance and buses aren't readily available)
-Get her an appt with a skin specialist to help with fixing/minimizing the look of the scars
-Get her an Otterbox phone case (because she keeps breaking her phone, which is her main joy in life)
I sincerely appreciate any support and look forward to a day when I can see a big sister smile on her face. I cannot even understand what she goes through on a daily basis as judgement is often passed without even getting to know a person. She was dealt a very difficult card hand.
She had no idea I was starting this. I will keep this open until the New Year then close it and present her with what has been raised :)
Note: She is working with an eye specialist now but the prognosis is not good.
Photos: There was flooding in her neighbourhood more recently and she went out to give a hand (as you can see by the most recent picture) she was in so much pain the following days but thats the kind of person she is. The first photo is from just before her most recent surgery.
People that don't know you, should know you because you are an inspiration. You are the toughest person I know both mentally and physically. You always giggle and find humour in the little things life has to offer and I love this about you. I hope you go to bed tonight knowing that I admire you and look up to you, as the big sister you are to me. I hope this New Year is full of health & happiness.
Message to you:
I was thinking about what I really want for Christmas this year and it is to have a healthy big sister again.
My sister grew up with and still has Hydrocephalus which is a condition in whereby fluid accumulates in the brain. It can cause brain damage. This condition can be treated with a shunt system but still can involve complications. I remember growing up at the Children's Hospital of Eastern Ontario as we were frequent visitors and seeing my parents face the hardships of raising a child that does not have optimal health. CHEO was amazing and provided her with the care and attention to her file she needed.
One day when my sister was older (late teens/early 20's) we brought her to a different local hospital as she was really not feeling well. We advised the staff of this and her medical history. In a nutshell, they did not provide adequate care and it was an insane amount of hours later before she had been seen (and in our opinion not properly diagnosed) whereby my sister had to be rushed for immediate surgery. It turned out she had appendicitis and by that time her appendix had burst.
She finally was released days later and subsequently ended up getting a severe infection from the operation. They butchered her entire body (you have never seen scars like this) trying to remove all the shunt tubing and she had so many surgeries to correct, that she nearly died on the table.
If they only knew the quality of her life since
If they could see it
If they could live it
If they could be in her shoes for a day
They would understand her best day now is everyone else's worst day
She is on so much medication just to feel "normal" she is losing her hair and destroying the inside of her body. That operation left her with such terrible nerve pain damage in her arm and shoulder-blade and she cannot use it without being in so much pain. I must say even with all the pain and hospital visits she kept working on her Nurses Aid program as she so badly wanted to continue work. Though she finished her program, she has since been rejected from this type of employment because she cannot lift routinely anymore. She is 34 now and since the one appendix surgery she has had so many complications that I cannot count the surgeries.
Her latest surgery only a few years ago in August was where it all got worse. Something in her brain got impacted and since she was left with crossed eyes (fully one eye, partially in the other) and lost sensation in her areas of her face like her lips/mouth. She is right now trying to teach herself to fully blink. Due to her eyes, she is not stable (from a walking/standing perspective) so she cannot get employment anywhere as she is a liability. Trust me she has looked! Our dad does so much to help her but I know she could use more help financially. She also has a cat (her companion) which has been really costly because he requires a special diet.
I went to her house the other day and she was cooking on the stovetop, not facing my direction. I heard her sniffling and could tell she was fighting back tears so when she turned around she wouldnt show me and would appear fine. Her pain, is my pain and I cannot believe she must endure this chronic pain and receives barely enough a month to live off of.
What I would like to do with these funds that will improve the quality of my siblings life:
*Purchase and install a special hydrotherapy bathtub for her
-Get her a gym membership to her local gym with a personalized trainer (sessions) that understands her unique health issues, obstacles and challenges and also pay for her aqua-fit classes in support of her strengthening her body
-Get her a new bed and assist with medical supply purchases
-Get her an appointment with a a hair specialist and pay for what treatments can be accommodated with amount raised
-Pay for more holistic alternatives (mind & body) for pain relief (acupuncture, hydrotherapy, reflexology) and pay for sessions
-Use money to assist with an online meal plan subscription - purchasing healthier groceries to accommodate with personal trainer goals
-Use some money towards transportation to these items above (she does not live super close to these items - walking distance and buses aren't readily available)
-Get her an appt with a skin specialist to help with fixing/minimizing the look of the scars
-Get her an Otterbox phone case (because she keeps breaking her phone, which is her main joy in life)
I sincerely appreciate any support and look forward to a day when I can see a big sister smile on her face. I cannot even understand what she goes through on a daily basis as judgement is often passed without even getting to know a person. She was dealt a very difficult card hand.
She had no idea I was starting this. I will keep this open until the New Year then close it and present her with what has been raised :)
Note: She is working with an eye specialist now but the prognosis is not good.
Photos: There was flooding in her neighbourhood more recently and she went out to give a hand (as you can see by the most recent picture) she was in so much pain the following days but thats the kind of person she is. The first photo is from just before her most recent surgery.
Organizer
Julie Godden
Organizer
Kenmore, ON
