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| Address: | P.O. Box 38328 Shreveport, LA 71133 |
| Website: | http://WWW.CHILDRENANDARTHRITIS.ORG |
| LINCC Link: | http://www.lincc.us/communityplatform/nla/organization/profile/id/721170530 |
Camp Jambalaya Jubilee 2016 was exactly what we needed. This was our first year attending and it will not be the last! Words cannot express how I feel. It was amazing getting to know other parents that understand. You all did a great job.
Love,
LaSheila Young & Jimirrial Cleaver
Dear Children and Arthritis Organization:
I wanted to formally thank you for Jambalaya Jubilee 2016. I attended the camp with my son who has JA and my daughter who does not have JA. I write this letter with joy in my heart and holding back tears. My son had JA from birth along with Celiac Disease. We did not get diagnosed until he was 2.5. We went through numerous doctors and numerous tests. I almost lost him due to walking pneumonia and strep when he was 1.5. All I can say is I never feel like we belong in this world. I'm a single mom that divorced when he was three because my husband at the time could not handle his diagnosis. Dr. Ray at the time was the only Pediatric Rheumatologist in the state of MS. I was even contemplating going to Memphis for a second opinion. My son has arthritis in his knees that has affected him from birth. When we met Doctor Ray he could barely walk and we had been carrying him wherever we went. She is truly a miracle worker and God works through her. She never gave up hope. She supported me and my family when I was at my emotional end. He was so sick. I was very upset at first and angry about his JA diagnosis. I blamed myself and God. I did everything right when I was pregnant and didn't understand how this could happen to my child. The first five years of his life and my family's life was hell. I was a divorced mom with a sick child and a healthy child. We divorced when my son was three but the marriage was already over before the divorce. Caring for my son consumed my life at one point. Kerry could barely make it an entire school year without missing multiple days. I can say no one around me really understood what I was going through nor did I tell them. I would wake up early just to pick my son up out of bed and dress him and help him get into the bathroom etc. The things healthy children take for granted. I said all that to say Jambalaya Jubilee 2016 helped me realize I'm not alone. Its more parents struggling with the same issues. Eight years into this diagnosis I realized I never really dealt with the emotional toll it has taken on my family. This weekend gave me the opportunity to tell my story and feel those needed emotions. I finally was in a place I could let go and receive comfort and support from people that understand. I finally was able to have the melt down I needed and people to support me. I shed so many tears this weekend for so many reasons. When the weekend was over I was thanking God that he chose me to parent a JA child. I found hope and love at Jambalaya Jubilee 2016. My son is very inactive at home and he has emotional issues related to his health issues. He is very shy and he also has visual problems. He finally got to be a child and play and feel a part of a group. I saw the children loving and supporting each other and no child was left out or made to feel bad due to their disease. The children adjusted to each other's limitations to make sure everyone was included. I never have felt even in my own family that they truly understood what we go through daily. They danced, played, hugged, and supported each other like only children with rheumological diseases no how to do. I want to let you know thanks for the gifts of community, a new family, acceptance, love and just joy. I saw this happen with JA children and the non JA siblings got to have their time also. They got some attention that they don't always get because their family has to provide so much care to their siblings or sibling. Thanks for changing our lives forever. I don't know if I would have ever got a chance to heal like I should if it wasn't for this opportunity. My son is currently in non-medication remission. I will pray for these children and families to receive a1 healing from God in relation to the illness and the emotions that go on with the illness. I will also keep you and your wonderful organization in my prayers. I want to thank you again for providing a heaven on earth for us this weekend. Please continue this camp. You don't' know how many broken things you fixed. The therapists, doctors, volunteers, and other families. were just outstanding in everything they brought to the camp. We often pray for deliverance and healing but we don't always know how God intends on answering prayers. I know God to be a healer, a way maker, and the ultimate form of peace and love. He used you guys to heal and bring forth some miracles this weekend. He is such an intentional God. The parents healed in more ways than you guys will ever know. Thank for being a game changer for so many this weekend. I pray God enlarges your territory and he continues to bless you in so many ways that your cup over flows. Thanks again on behalf of Mariyah Williams (None JA child), Kerry Lucious(JA Child} and Brandy Lucious(parent). I'm a LMSW by training and have worked as a hospital social worker for fifteen years and his diagnosis really took a toll on me because social workers are fix it people and I could not fix Kerry. I can't wait until next year.
Sincerely,
Brandy Lucious
How do I go about expressing the value of Jambalaya Jubilee to our family?
When our family received the official diagnosis of JIA over 7 years ago we were overwhelmed, terrified, hopeless, and lost. Sitting in the doctors office that day with tears streaming down our faces and utter disrepair setting in I turned and begged our doctor to tell us what to do next. His next piece of advice proved to be the most valuable piece to date. He reached behind him and pulled a Jambalaya ,Jubilee pamphlet from a plastic rack on the wall. As he handed it to me he said, "this pamphlet holds the answers to the many questions that will help you navigate this disease." Two days later I found myself combing through the stacks of lab results, prescriptions, and doctors appointment notes I kept as a way to stay somewhat organized.
There in the midst of all of the paperwork was the pamphlet again. I took the time and looked it over wondering what a three day weekend could do to help guide our family through this time. I instantly called the number on the pamphlet to get more information. Janie Parker answered my call and spent twenty minuets talking to me about the wonderful experiences provided by Jambalaya Jubilee. By the time we ended our phone call I had signed our family up to attend that years JJ. To say this was the best decision I ever made would be an understatement. We attended Jambalaya Jubilee for the first time in June of 2009. At the time our son Parker was 9 years old and struggling to deal with his diagnosis and the changes his disease was causing in his day to day life. My husband and I were struggling with how to manage his disease while still making him feel like a "normal" 9 year old. Our four year old twins were struggling to deal with the amount of time and attention spent managing and navigating their older brothers medical needs. As a family we were struggling to stay afloat while continuing to function. Jambalaya Jubilee changed all of that in 3 days! Jambalaya Jubilee became and continues to be our life line, our second family, and our main source for information and strength. This past June we attended our 7th JJ weekend. It has become a family reunion of sorts and a must attend on our summer schedule. 7 years into this process living with this disease and we still walk away from the weekend with new and exciting information, new friends and contacts, and most importantly renewed HOPE.
Parker is now 16, he has had 7 years of ups and downs with his disease. He has endured medicine changes, surgical procedures, and diagnosis changes but through it all he has been uplifted and encouraged by his JJ family. He is in constant contact with his JJ friends and texts with them daily. I regularly chat and message with fellow JJ parents, and my younger children have pictures of their Jambalaya Jubilee friends covering the bulletin boards in their rooms. To say that Jambalaya Jubilee is important doesn't begin to tell the story. Jambalaya Jubilee is the reason we are not only surviving but thriving in the wake of our arthritis reality. As a parent you shouldn't have to face injecting your child with medicines weekly, sit by and watch them receive infusions monthly, drive an hour twice a week for physical and occupational therapy, or advocate for your child's educational1 rights but that is what we face as parents to a child with arthrit.is. Jambalaya Jubilee hasn't taken this reality from us or sheltered us from these hardships but it has provided us with a support system to lift us up when life seems to be trying to hold us down. It has provided us with knowledge and information to improve our treatments and outcomes. And most importantly it has allowed us to do it with dreams and hope for Parker's future.
I could go on and on singing the praises and importance of the work Dr. Pressly and Mrs. Pressly do in the lives of thousands of families. I could tell you memory after memory we have made because of Jambalaya Jubilee. I could explain all of the details of Parker's disease and his medications that I have learned thanks to Jambalaya Jubilee but I don't think you have enough time to sit and read the pages I could fill. I will say that it breaks my heart to think of where our family would be without the Pressly family and Jambalaya Jubilee. Where would that terrified mother and father sitting in the doctors office crying and pleading for help be without that pamphlet holding all the answers? VVho would help guide them and encourage them on their journey if there was no Jambalaya Jubilee? Sadly, the answer, is no one.
I will wrap up this letter with a small story. As parents of a boy living with this disease we often worried about Parker's emotional health. Parker isn't the most communicative or vocal person when it comes to sharing his struggles, I guess he feels it isn't very manly to share his feelings. After 4 years of enjoying life in a medicated (infusions every 6 weeks and injections weekly) remission Parker's disease flared. This flare instantly shook up our family in many of the same ways it had upon Parker's initial diagnosis. Over the course of several months Parker seemed really distant and quiet, he was withdrawing from school friends, and had to give up his spot in athletics because of the ongoing joint issues. It was a low point for him with his disease and we felt like we were loosing our fun loving, carefree child. That summer during Jambalaya Jubilee a group of his friends started a group text thread that continued long after the weekend wrapped up. I slowly started seeing Parker transition back to his happy go lucky self. Doing my parenting duty one night I scrolled through his text messages and began reading the texts labeled "Wolf Pack" (a silly name his JJ friends call their group). In this text thread were "normal" conversations mixed in with conversations about infusion side affects or questions about how to keep up with a busy school load while missing so much school because of appointments. I instantly started bawling. As a mom these are things I can't provide him with. I don't know what it is like to live with this awful disease personally. I can't tell him how to handle certain side affects because I have never had them myself. These kids get it! They can provide him with first hand advice and encouragement. They can say, "Arthritis sux, but then you live" because they know his reality, they live his reality. Feeling like he wasn't the only person on the planet facing these struggles, frustrations, and hardships really helped Parker to dig deep and push through. I saw a quote just the other day and it holds true from our families experience. The quote was, "When you replace the "I" in illness with "We" you get Wellness". Jambalaya Jubilee helped our family become part of the 'We".
I hope our story has shed some light on the value our family places on Jambalaya Jubilee.
Sincerely,
Nicole Crain
Love,
LaSheila Young & Jimirrial Cleaver
Dear Children and Arthritis Organization:
I wanted to formally thank you for Jambalaya Jubilee 2016. I attended the camp with my son who has JA and my daughter who does not have JA. I write this letter with joy in my heart and holding back tears. My son had JA from birth along with Celiac Disease. We did not get diagnosed until he was 2.5. We went through numerous doctors and numerous tests. I almost lost him due to walking pneumonia and strep when he was 1.5. All I can say is I never feel like we belong in this world. I'm a single mom that divorced when he was three because my husband at the time could not handle his diagnosis. Dr. Ray at the time was the only Pediatric Rheumatologist in the state of MS. I was even contemplating going to Memphis for a second opinion. My son has arthritis in his knees that has affected him from birth. When we met Doctor Ray he could barely walk and we had been carrying him wherever we went. She is truly a miracle worker and God works through her. She never gave up hope. She supported me and my family when I was at my emotional end. He was so sick. I was very upset at first and angry about his JA diagnosis. I blamed myself and God. I did everything right when I was pregnant and didn't understand how this could happen to my child. The first five years of his life and my family's life was hell. I was a divorced mom with a sick child and a healthy child. We divorced when my son was three but the marriage was already over before the divorce. Caring for my son consumed my life at one point. Kerry could barely make it an entire school year without missing multiple days. I can say no one around me really understood what I was going through nor did I tell them. I would wake up early just to pick my son up out of bed and dress him and help him get into the bathroom etc. The things healthy children take for granted. I said all that to say Jambalaya Jubilee 2016 helped me realize I'm not alone. Its more parents struggling with the same issues. Eight years into this diagnosis I realized I never really dealt with the emotional toll it has taken on my family. This weekend gave me the opportunity to tell my story and feel those needed emotions. I finally was in a place I could let go and receive comfort and support from people that understand. I finally was able to have the melt down I needed and people to support me. I shed so many tears this weekend for so many reasons. When the weekend was over I was thanking God that he chose me to parent a JA child. I found hope and love at Jambalaya Jubilee 2016. My son is very inactive at home and he has emotional issues related to his health issues. He is very shy and he also has visual problems. He finally got to be a child and play and feel a part of a group. I saw the children loving and supporting each other and no child was left out or made to feel bad due to their disease. The children adjusted to each other's limitations to make sure everyone was included. I never have felt even in my own family that they truly understood what we go through daily. They danced, played, hugged, and supported each other like only children with rheumological diseases no how to do. I want to let you know thanks for the gifts of community, a new family, acceptance, love and just joy. I saw this happen with JA children and the non JA siblings got to have their time also. They got some attention that they don't always get because their family has to provide so much care to their siblings or sibling. Thanks for changing our lives forever. I don't know if I would have ever got a chance to heal like I should if it wasn't for this opportunity. My son is currently in non-medication remission. I will pray for these children and families to receive a1 healing from God in relation to the illness and the emotions that go on with the illness. I will also keep you and your wonderful organization in my prayers. I want to thank you again for providing a heaven on earth for us this weekend. Please continue this camp. You don't' know how many broken things you fixed. The therapists, doctors, volunteers, and other families. were just outstanding in everything they brought to the camp. We often pray for deliverance and healing but we don't always know how God intends on answering prayers. I know God to be a healer, a way maker, and the ultimate form of peace and love. He used you guys to heal and bring forth some miracles this weekend. He is such an intentional God. The parents healed in more ways than you guys will ever know. Thank for being a game changer for so many this weekend. I pray God enlarges your territory and he continues to bless you in so many ways that your cup over flows. Thanks again on behalf of Mariyah Williams (None JA child), Kerry Lucious(JA Child} and Brandy Lucious(parent). I'm a LMSW by training and have worked as a hospital social worker for fifteen years and his diagnosis really took a toll on me because social workers are fix it people and I could not fix Kerry. I can't wait until next year.
Sincerely,
Brandy Lucious
How do I go about expressing the value of Jambalaya Jubilee to our family?
When our family received the official diagnosis of JIA over 7 years ago we were overwhelmed, terrified, hopeless, and lost. Sitting in the doctors office that day with tears streaming down our faces and utter disrepair setting in I turned and begged our doctor to tell us what to do next. His next piece of advice proved to be the most valuable piece to date. He reached behind him and pulled a Jambalaya ,Jubilee pamphlet from a plastic rack on the wall. As he handed it to me he said, "this pamphlet holds the answers to the many questions that will help you navigate this disease." Two days later I found myself combing through the stacks of lab results, prescriptions, and doctors appointment notes I kept as a way to stay somewhat organized.
There in the midst of all of the paperwork was the pamphlet again. I took the time and looked it over wondering what a three day weekend could do to help guide our family through this time. I instantly called the number on the pamphlet to get more information. Janie Parker answered my call and spent twenty minuets talking to me about the wonderful experiences provided by Jambalaya Jubilee. By the time we ended our phone call I had signed our family up to attend that years JJ. To say this was the best decision I ever made would be an understatement. We attended Jambalaya Jubilee for the first time in June of 2009. At the time our son Parker was 9 years old and struggling to deal with his diagnosis and the changes his disease was causing in his day to day life. My husband and I were struggling with how to manage his disease while still making him feel like a "normal" 9 year old. Our four year old twins were struggling to deal with the amount of time and attention spent managing and navigating their older brothers medical needs. As a family we were struggling to stay afloat while continuing to function. Jambalaya Jubilee changed all of that in 3 days! Jambalaya Jubilee became and continues to be our life line, our second family, and our main source for information and strength. This past June we attended our 7th JJ weekend. It has become a family reunion of sorts and a must attend on our summer schedule. 7 years into this process living with this disease and we still walk away from the weekend with new and exciting information, new friends and contacts, and most importantly renewed HOPE.
Parker is now 16, he has had 7 years of ups and downs with his disease. He has endured medicine changes, surgical procedures, and diagnosis changes but through it all he has been uplifted and encouraged by his JJ family. He is in constant contact with his JJ friends and texts with them daily. I regularly chat and message with fellow JJ parents, and my younger children have pictures of their Jambalaya Jubilee friends covering the bulletin boards in their rooms. To say that Jambalaya Jubilee is important doesn't begin to tell the story. Jambalaya Jubilee is the reason we are not only surviving but thriving in the wake of our arthritis reality. As a parent you shouldn't have to face injecting your child with medicines weekly, sit by and watch them receive infusions monthly, drive an hour twice a week for physical and occupational therapy, or advocate for your child's educational1 rights but that is what we face as parents to a child with arthrit.is. Jambalaya Jubilee hasn't taken this reality from us or sheltered us from these hardships but it has provided us with a support system to lift us up when life seems to be trying to hold us down. It has provided us with knowledge and information to improve our treatments and outcomes. And most importantly it has allowed us to do it with dreams and hope for Parker's future.
I could go on and on singing the praises and importance of the work Dr. Pressly and Mrs. Pressly do in the lives of thousands of families. I could tell you memory after memory we have made because of Jambalaya Jubilee. I could explain all of the details of Parker's disease and his medications that I have learned thanks to Jambalaya Jubilee but I don't think you have enough time to sit and read the pages I could fill. I will say that it breaks my heart to think of where our family would be without the Pressly family and Jambalaya Jubilee. Where would that terrified mother and father sitting in the doctors office crying and pleading for help be without that pamphlet holding all the answers? VVho would help guide them and encourage them on their journey if there was no Jambalaya Jubilee? Sadly, the answer, is no one.
I will wrap up this letter with a small story. As parents of a boy living with this disease we often worried about Parker's emotional health. Parker isn't the most communicative or vocal person when it comes to sharing his struggles, I guess he feels it isn't very manly to share his feelings. After 4 years of enjoying life in a medicated (infusions every 6 weeks and injections weekly) remission Parker's disease flared. This flare instantly shook up our family in many of the same ways it had upon Parker's initial diagnosis. Over the course of several months Parker seemed really distant and quiet, he was withdrawing from school friends, and had to give up his spot in athletics because of the ongoing joint issues. It was a low point for him with his disease and we felt like we were loosing our fun loving, carefree child. That summer during Jambalaya Jubilee a group of his friends started a group text thread that continued long after the weekend wrapped up. I slowly started seeing Parker transition back to his happy go lucky self. Doing my parenting duty one night I scrolled through his text messages and began reading the texts labeled "Wolf Pack" (a silly name his JJ friends call their group). In this text thread were "normal" conversations mixed in with conversations about infusion side affects or questions about how to keep up with a busy school load while missing so much school because of appointments. I instantly started bawling. As a mom these are things I can't provide him with. I don't know what it is like to live with this awful disease personally. I can't tell him how to handle certain side affects because I have never had them myself. These kids get it! They can provide him with first hand advice and encouragement. They can say, "Arthritis sux, but then you live" because they know his reality, they live his reality. Feeling like he wasn't the only person on the planet facing these struggles, frustrations, and hardships really helped Parker to dig deep and push through. I saw a quote just the other day and it holds true from our families experience. The quote was, "When you replace the "I" in illness with "We" you get Wellness". Jambalaya Jubilee helped our family become part of the 'We".
I hope our story has shed some light on the value our family places on Jambalaya Jubilee.
Sincerely,
Nicole Crain
