Help 4 Shannon!
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Please help support Shannon and her Mother!
Shannon is a smiling sweet kind hearted young girl who loves people, pets and especially the elderly. She became VERY sick as her grandmother was dying of cancer and her fought to find the answers to why she was unable to even stand up!
A little over a year ago Shannon was a healthy, active, vibrant 13 year old girl. She was an honor roll student, she played basketball, indoor soccer, outdoor soccer, she played the clarinet and was in band, she was involved with girl scouts and helping in her community. She had a lot of friends, loved to read for hour, loved animals.. She just loved life and was voted most friendliest by her classmates. On the outside she seemed like a typical teenage girl, however Shannon was anything but typical. Shannon has an unusual love for elderly people and loved to visit them at the local nursing home. She especially loved the grouchy ones because she said "They needed her more" She had a smile for everyone all the time regardless of what she was going though, how she felt or the day she was having. She has love and compassion for other people and always tried to understand and not judge.
Shannon was extremely close to her grandmother and as her grandmother got older and less able to do things Shannon took it upon herelff to do everything she could to take care of her. From a very young age she would help her grandmother do her grocery shopping and it became their thing, As her grandmothers health started to fail Shannon took over most of her grocery shopping for her and eventually all of it. She knew everything her grandmother would buy, what she could and could not eat, brands, etc. She would shop for it, pay for it then put it all away for her. She loved to do this for her and although towards the end of her grandmother's time with us Shannon was facing her own health issues. At this time we had no idea what was going on with Shannons health however she was starting to have a hard time standing or doing anything and simply functioning was becoming more and more difficult. She refused to stop caring for her grandmother and was with her in hospice taking care of her until her last breath.
It took several months, doctors and test but we finally got a diagnosis. Shannon has Pots Syndrome (postural othostatic tachycardia) When she stands up her blood pressure drops and her heart rate goes up over 30 points causing horrible things to happen. The symptoms are many and complex but today the vibrant, active amazing young lady now can no longer attend school, sports, or any ot the normal activities most children her age can do. She is at times in a wheel chair, everything she does takes 3 times more energy then it does for the next person, the blood pools down to her legs, her heart races, she has chronic fatigue syndrome, the list is just too long.
Shannon NEVER feels good however she continues on a daily basis to smile and think of others. Her spirit is unbreakable. Her childhood has been stolen from her yet her heart and sense of humor and love for others remains untouched. She is a true inspiration and I am humbled daily by the grace and strength she shows inspite of how her health and life has changed.
Shannon faces a lot of other problems as a result yet finds something to laugh aout every day and is grateful for everything. I am in awe of her.
You may or may not know her personally but Rosemarie has worked as a bus driver loving and supporting the children in her communities. Now she is loosing her home. The home she has lived in, in Hillsborough, NH. Why? Becasue of the cost of taking care of and being there for two people she loved with her whole heart her dying mother and her sick daughter as well as the loss of income, medical expenses, and cost of travelling to the doctores many of which are over and hour eachway.
I would like to bring you back in time from today to just over a year ago in their lives.
March 12th (today) We are finally home from the ER and shannon is safe in her bed and I should be sleeping too however I am laying here once again in awe of the spirit of such an incredible child. She suffers daily and it keeps getting worse, she can no longer attend school or any normal activities and is basically isolated and has lost so much and much more to come and has faced her parents splitting, the grandmother she was so close to, adored and helped take care of pass...she was there til her last breath taking care of her even while she faced her own illness and as a result of all of this is now losing her home and community etc. And her as her health continues to decline she sits in the ER listening to the long waits and stories of others suffering...stops thinking of what she is dealing with and now concerns herself with them and hoping they are taken care of quickly and falling in love with yet another elderly couple. Then while she is in the room suffering yet making me again laugh says "is it crazy that I look forward to every single day?" Oh my friggin word...are you kidding me???? I have always tried to teach my children not to focus on the negative and to be strong and the power of positive thinking and to think of others but seriously. ...this is above and beyond what any person should have the depth to get yet she does and I am so humbled and so incredibly proud and I thank God from the bottom of my heart for giving this young girl the strength, grace, courage and spirit that is rarely seen. I know I post about her alot and if it is tireing to anyone...by all means unfollow or even unfriend me but I am so inspired by her that I make no apologies for my post and thank you to those that have supported her.....trust me...you sont even know the half of it. (Rosemarie, Shannon's Mom wrote on facebook)
March 10th -What seems like a lifetime ago but in reality not too long ago our calender was filled with school events, sports events, outings with friends, etc. as I sit here and look at my calender today and see it is filled with nothing more then Dr. appointments it is another reminder of how quickly and dramatically life can change. Enjoy EVERY moment, treasure EVERYTHING and take NOTHING for granted! (Rosemarie, Shannon's Mom wrote on facebook)
March 8th- Today was supposed to be a day of fun for Shannon, instead we are on our way to the ER. Hopefully she will have a half way decent evening. Poor kid. Prayers for her please (Rosemarie, Shannon's Mom wrote on facebook)
The bookstore venture did not last long, she just wasn't up to it but she is still smiling. She doesn't look too good God bless her but she is smiling (Rosemarie, Shannon's Mom wrote on facebook)
February 7th- A little over a year ago I was sitting in the bleachers watching my baby play different sports and in the audience during band concerts, and picking up and dropping off friends, etc. etc. all the normal mom/kid stuff, today I sat in a chair watching her get a simple hair cut and a wave of panic came over me when the hairdresser had her do the simple act of standing up, still on her feel for a few minutes because her hair was to long to cut evenly sitting. It is amazing how fast things can change. All I could think about was when she was standing in the dr. office hooked up to machines so they could monitor what happens after 2 min. then 5 then 10...she can never make it to the 5 minute mark without her legs turning purple, vomiting and dropping. Her blood pressure drops dramatically and her heart rate goes up over 50 points which is a huge huge amount then she is exhausted and sick for the rest of the day from the simple act of standing. This isn't an "oh me oh my " post it is a simple reminder not to take anything for granted, enjoy every moment and don't sweat the small stuff because life can change in the blink of an eye. Shannon got her hair cut and she looks awesome but her heart will not stop racing for the rest of the evening for simply standing. Life can be a challenge for everyone in one way or another but dont let things get to you because someday you might wish what you worry about now was all you had to worry about. Live and enjoy life and be kind to everyone and dont take things for granted, be grateful you can stand up without preparing first knowing the impact the simple act will have on you, smile and get out of bed when your tired in the morning and want to hit the snooze button and e grateful you are physically able to do all the things you do not want to do in your busy day. Just simply be grateful and be happy!! (Rosemarie, Shannon's Mom wrote on facebook)
January 31st- Prayers for my shannon please
January 11th- Good article but it still leaves out so much of what this illness does and it is NOT common for people to outgrow it. There have been a few but it almost always comes back when something in life happens like the flu or an accident or too much stress. We need to get some ACTUAL information out there and RESEARCH!! There has to be a cure we just need to find it. The part of this that says they should go back to school is near impossible for the cases like Shannon that have this full blown, even her specialist at Boston Childrens hospital said to only put her in one class, any more would make it impossible to do anything else she needs to do to overcome this. Many of these Children were once athletes and honor roll students and now the brain fog that comes with this makes school extremely dificult plus the lights cause lines running through their eyes, etc. etc. the list is so long it is heartbreaking. We are not oh me, oh my type people so if I post things like this it is not for sympathy, this illness is horrible and awareness NEEDS to be made somehow. This is our reality and I am sorry if it seems we mention it too much (Rosemarie, Shannon's Mom wrote on facebook)
http://www.nytimes.com/2011/10/18/health/18brody.html?_r=0
November 5th- Many people are posting daily this month what they are thankful for...I am going to put it all in one post as I usually post how I am thankful anyway and dont want to annoy people with daily posts I am thankful for so much. I am thankful for the good lord as without him I would have nothing to be thankful for, I am thankful for my children and grandson and his sister which I have adopted as my granddaughter I am thankful for the incredible friends I have been blessed with that have stood beside us and supported us through tough Times, I am thankful that I live in a community with such wonderful people, I am soo blessed to have been given a mom who was so amazing and loving and precious and loved god and everyone regardless of what that amazing woman went through..which was a lot!! I am thankful for my job and as I have been able to be there for kids that needed someone, I am thankful for my home for however long I still have it....I am thankful...so thankful for laughter as it is truly medicine for the soul, I thankful for music...oh yes music. Seriously the list could go on and on because I am thankful for everything the good lord has given me but most importantly I am thankful for every day my beautiful little girl can get out of bed and function and so thankful for the beautiful smile god put on her face and nothing can take off. I appreciate any material things I may have but they are not what matters. Wow...there you go..all in one ahot and I am sure the there is is more. Lol. Be thankful for the important things in life...nothing else really matters oh yes and one last thing...I am thankful this year is almost over (Rosemarie, Shannon's Mom wrote on facebook)
September 17th- Shannon did not feel well today but refused to give in. She went to her class at school, walked to the library then went across the street to play with her friends for a little while. This may seem like a day in the life of the average kid...no big deal but for us it is a HUGE deal. It was only one class and the library isnt far from the school and she didn't hang out with her friends for long but put it all together and it is like running a marathon for her. It wasn't very long ago at all we thought she would not see a day like this. I am feeling so blessed for the little things expecially since for us the little things are big big things. She is tired and feels horrible but it is still a blessing she was able to do these things today. Thank God for the little things!!! (Rosemarie, Shannon's Mom wrote on facebook)
September 6th-OK, so the van breaks down yesterday...ugh then last night shannon is feeling horrible and her illness makes it hard to fall asleep, the poor kid finally goes to sleep only to be woken up at 1:00 in the morning by a bee stinging her, she is in pain and swollen and feels horrible yet she names the little bee and says she feels sorry for it then we laugh and joke about it....this morning was freezing and the heat would not work in the van or the bus, the van breaks down again and when I finally get it started I come home to the trash being torn apart all over the kitchen by the dog. I should be screaming but all I can do is think of Shannons attitude last night and take a lesson from her and laugh. LOL It goes to show that we cannot always control what life throws at us but it is up to us what we do about it and how we handle it. Attitude is everything and I am feeling blessed for my daughters unbreakable spirit. Happy Friday everyone and keep smiling!!! (Rosemarie, Shannon's Mom wrote on facebook)
August 26th- Had a good meeting with the school today. Shannon will be taking 2 classes at school...only one per day and the rest at home. This is will certainly be an adjusment but it should work out well. Tomm. First day of school...which means back to work for me...yikes...up at 4:00 am (Rosemarie, Shannon's Mom wrote on facebook)
July 12th- I want to thank all the wonderful friends that have stood by us and supported Shannon and I through this tough year. Between my moms illness then her passing and shannons illness as well as many other things this has been a year from hell but we have been so blessed with many wonderful, caring, loving people in our lives. I know many have offered to do anything you can and your offers are sincere and although I have never or could ever ask for anything from anyone please know that it your love and support means a lot and I treasure each and everyone of you. This illness with Shannon has hit us hard and we havr a long journey but god is good and Shannon and I will get through this all some how. Thank you so much for your love and support!!!!!! (Rosemarie, Shannon's Mom wrote on facebook)
June 11th- We finally have an appointment wit the cardiologist today! Pray for answers please! (Rosemarie, Shannon's Mom wrote on facebook)
Shannon is a smiling sweet kind hearted young girl who loves people, pets and especially the elderly. She became VERY sick as her grandmother was dying of cancer and her fought to find the answers to why she was unable to even stand up!
A little over a year ago Shannon was a healthy, active, vibrant 13 year old girl. She was an honor roll student, she played basketball, indoor soccer, outdoor soccer, she played the clarinet and was in band, she was involved with girl scouts and helping in her community. She had a lot of friends, loved to read for hour, loved animals.. She just loved life and was voted most friendliest by her classmates. On the outside she seemed like a typical teenage girl, however Shannon was anything but typical. Shannon has an unusual love for elderly people and loved to visit them at the local nursing home. She especially loved the grouchy ones because she said "They needed her more" She had a smile for everyone all the time regardless of what she was going though, how she felt or the day she was having. She has love and compassion for other people and always tried to understand and not judge.
Shannon was extremely close to her grandmother and as her grandmother got older and less able to do things Shannon took it upon herelff to do everything she could to take care of her. From a very young age she would help her grandmother do her grocery shopping and it became their thing, As her grandmothers health started to fail Shannon took over most of her grocery shopping for her and eventually all of it. She knew everything her grandmother would buy, what she could and could not eat, brands, etc. She would shop for it, pay for it then put it all away for her. She loved to do this for her and although towards the end of her grandmother's time with us Shannon was facing her own health issues. At this time we had no idea what was going on with Shannons health however she was starting to have a hard time standing or doing anything and simply functioning was becoming more and more difficult. She refused to stop caring for her grandmother and was with her in hospice taking care of her until her last breath.
It took several months, doctors and test but we finally got a diagnosis. Shannon has Pots Syndrome (postural othostatic tachycardia) When she stands up her blood pressure drops and her heart rate goes up over 30 points causing horrible things to happen. The symptoms are many and complex but today the vibrant, active amazing young lady now can no longer attend school, sports, or any ot the normal activities most children her age can do. She is at times in a wheel chair, everything she does takes 3 times more energy then it does for the next person, the blood pools down to her legs, her heart races, she has chronic fatigue syndrome, the list is just too long.
Shannon NEVER feels good however she continues on a daily basis to smile and think of others. Her spirit is unbreakable. Her childhood has been stolen from her yet her heart and sense of humor and love for others remains untouched. She is a true inspiration and I am humbled daily by the grace and strength she shows inspite of how her health and life has changed.
Shannon faces a lot of other problems as a result yet finds something to laugh aout every day and is grateful for everything. I am in awe of her.
You may or may not know her personally but Rosemarie has worked as a bus driver loving and supporting the children in her communities. Now she is loosing her home. The home she has lived in, in Hillsborough, NH. Why? Becasue of the cost of taking care of and being there for two people she loved with her whole heart her dying mother and her sick daughter as well as the loss of income, medical expenses, and cost of travelling to the doctores many of which are over and hour eachway.
I would like to bring you back in time from today to just over a year ago in their lives.
March 12th (today) We are finally home from the ER and shannon is safe in her bed and I should be sleeping too however I am laying here once again in awe of the spirit of such an incredible child. She suffers daily and it keeps getting worse, she can no longer attend school or any normal activities and is basically isolated and has lost so much and much more to come and has faced her parents splitting, the grandmother she was so close to, adored and helped take care of pass...she was there til her last breath taking care of her even while she faced her own illness and as a result of all of this is now losing her home and community etc. And her as her health continues to decline she sits in the ER listening to the long waits and stories of others suffering...stops thinking of what she is dealing with and now concerns herself with them and hoping they are taken care of quickly and falling in love with yet another elderly couple. Then while she is in the room suffering yet making me again laugh says "is it crazy that I look forward to every single day?" Oh my friggin word...are you kidding me???? I have always tried to teach my children not to focus on the negative and to be strong and the power of positive thinking and to think of others but seriously. ...this is above and beyond what any person should have the depth to get yet she does and I am so humbled and so incredibly proud and I thank God from the bottom of my heart for giving this young girl the strength, grace, courage and spirit that is rarely seen. I know I post about her alot and if it is tireing to anyone...by all means unfollow or even unfriend me but I am so inspired by her that I make no apologies for my post and thank you to those that have supported her.....trust me...you sont even know the half of it. (Rosemarie, Shannon's Mom wrote on facebook)
March 10th -What seems like a lifetime ago but in reality not too long ago our calender was filled with school events, sports events, outings with friends, etc. as I sit here and look at my calender today and see it is filled with nothing more then Dr. appointments it is another reminder of how quickly and dramatically life can change. Enjoy EVERY moment, treasure EVERYTHING and take NOTHING for granted! (Rosemarie, Shannon's Mom wrote on facebook)
March 8th- Today was supposed to be a day of fun for Shannon, instead we are on our way to the ER. Hopefully she will have a half way decent evening. Poor kid. Prayers for her please (Rosemarie, Shannon's Mom wrote on facebook)
The bookstore venture did not last long, she just wasn't up to it but she is still smiling. She doesn't look too good God bless her but she is smiling (Rosemarie, Shannon's Mom wrote on facebook)
February 7th- A little over a year ago I was sitting in the bleachers watching my baby play different sports and in the audience during band concerts, and picking up and dropping off friends, etc. etc. all the normal mom/kid stuff, today I sat in a chair watching her get a simple hair cut and a wave of panic came over me when the hairdresser had her do the simple act of standing up, still on her feel for a few minutes because her hair was to long to cut evenly sitting. It is amazing how fast things can change. All I could think about was when she was standing in the dr. office hooked up to machines so they could monitor what happens after 2 min. then 5 then 10...she can never make it to the 5 minute mark without her legs turning purple, vomiting and dropping. Her blood pressure drops dramatically and her heart rate goes up over 50 points which is a huge huge amount then she is exhausted and sick for the rest of the day from the simple act of standing. This isn't an "oh me oh my " post it is a simple reminder not to take anything for granted, enjoy every moment and don't sweat the small stuff because life can change in the blink of an eye. Shannon got her hair cut and she looks awesome but her heart will not stop racing for the rest of the evening for simply standing. Life can be a challenge for everyone in one way or another but dont let things get to you because someday you might wish what you worry about now was all you had to worry about. Live and enjoy life and be kind to everyone and dont take things for granted, be grateful you can stand up without preparing first knowing the impact the simple act will have on you, smile and get out of bed when your tired in the morning and want to hit the snooze button and e grateful you are physically able to do all the things you do not want to do in your busy day. Just simply be grateful and be happy!! (Rosemarie, Shannon's Mom wrote on facebook)
January 31st- Prayers for my shannon please
January 11th- Good article but it still leaves out so much of what this illness does and it is NOT common for people to outgrow it. There have been a few but it almost always comes back when something in life happens like the flu or an accident or too much stress. We need to get some ACTUAL information out there and RESEARCH!! There has to be a cure we just need to find it. The part of this that says they should go back to school is near impossible for the cases like Shannon that have this full blown, even her specialist at Boston Childrens hospital said to only put her in one class, any more would make it impossible to do anything else she needs to do to overcome this. Many of these Children were once athletes and honor roll students and now the brain fog that comes with this makes school extremely dificult plus the lights cause lines running through their eyes, etc. etc. the list is so long it is heartbreaking. We are not oh me, oh my type people so if I post things like this it is not for sympathy, this illness is horrible and awareness NEEDS to be made somehow. This is our reality and I am sorry if it seems we mention it too much (Rosemarie, Shannon's Mom wrote on facebook)
http://www.nytimes.com/2011/10/18/health/18brody.html?_r=0
November 5th- Many people are posting daily this month what they are thankful for...I am going to put it all in one post as I usually post how I am thankful anyway and dont want to annoy people with daily posts I am thankful for so much. I am thankful for the good lord as without him I would have nothing to be thankful for, I am thankful for my children and grandson and his sister which I have adopted as my granddaughter I am thankful for the incredible friends I have been blessed with that have stood beside us and supported us through tough Times, I am thankful that I live in a community with such wonderful people, I am soo blessed to have been given a mom who was so amazing and loving and precious and loved god and everyone regardless of what that amazing woman went through..which was a lot!! I am thankful for my job and as I have been able to be there for kids that needed someone, I am thankful for my home for however long I still have it....I am thankful...so thankful for laughter as it is truly medicine for the soul, I thankful for music...oh yes music. Seriously the list could go on and on because I am thankful for everything the good lord has given me but most importantly I am thankful for every day my beautiful little girl can get out of bed and function and so thankful for the beautiful smile god put on her face and nothing can take off. I appreciate any material things I may have but they are not what matters. Wow...there you go..all in one ahot and I am sure the there is is more. Lol. Be thankful for the important things in life...nothing else really matters oh yes and one last thing...I am thankful this year is almost over (Rosemarie, Shannon's Mom wrote on facebook)
September 17th- Shannon did not feel well today but refused to give in. She went to her class at school, walked to the library then went across the street to play with her friends for a little while. This may seem like a day in the life of the average kid...no big deal but for us it is a HUGE deal. It was only one class and the library isnt far from the school and she didn't hang out with her friends for long but put it all together and it is like running a marathon for her. It wasn't very long ago at all we thought she would not see a day like this. I am feeling so blessed for the little things expecially since for us the little things are big big things. She is tired and feels horrible but it is still a blessing she was able to do these things today. Thank God for the little things!!! (Rosemarie, Shannon's Mom wrote on facebook)
September 6th-OK, so the van breaks down yesterday...ugh then last night shannon is feeling horrible and her illness makes it hard to fall asleep, the poor kid finally goes to sleep only to be woken up at 1:00 in the morning by a bee stinging her, she is in pain and swollen and feels horrible yet she names the little bee and says she feels sorry for it then we laugh and joke about it....this morning was freezing and the heat would not work in the van or the bus, the van breaks down again and when I finally get it started I come home to the trash being torn apart all over the kitchen by the dog. I should be screaming but all I can do is think of Shannons attitude last night and take a lesson from her and laugh. LOL It goes to show that we cannot always control what life throws at us but it is up to us what we do about it and how we handle it. Attitude is everything and I am feeling blessed for my daughters unbreakable spirit. Happy Friday everyone and keep smiling!!! (Rosemarie, Shannon's Mom wrote on facebook)
August 26th- Had a good meeting with the school today. Shannon will be taking 2 classes at school...only one per day and the rest at home. This is will certainly be an adjusment but it should work out well. Tomm. First day of school...which means back to work for me...yikes...up at 4:00 am (Rosemarie, Shannon's Mom wrote on facebook)
July 12th- I want to thank all the wonderful friends that have stood by us and supported Shannon and I through this tough year. Between my moms illness then her passing and shannons illness as well as many other things this has been a year from hell but we have been so blessed with many wonderful, caring, loving people in our lives. I know many have offered to do anything you can and your offers are sincere and although I have never or could ever ask for anything from anyone please know that it your love and support means a lot and I treasure each and everyone of you. This illness with Shannon has hit us hard and we havr a long journey but god is good and Shannon and I will get through this all some how. Thank you so much for your love and support!!!!!! (Rosemarie, Shannon's Mom wrote on facebook)
June 11th- We finally have an appointment wit the cardiologist today! Pray for answers please! (Rosemarie, Shannon's Mom wrote on facebook)
We are praying a cure for P.O.T.S will be found!!
Please help us raise the much needed funds for Shananon to be able to stay in her home and in her community where she is loved by so many. I personally believe another big cange would be too much on her physically and emtionally.
THANK YOU to each person who contributes! May god bless you!!
~Bobbie Johnston
Please help us raise the much needed funds for Shananon to be able to stay in her home and in her community where she is loved by so many. I personally believe another big cange would be too much on her physically and emtionally.
THANK YOU to each person who contributes! May god bless you!!
~Bobbie Johnston
Organizer
Bobbie Howland Johnston
Organizer
Hillsborough, NH
