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    Default Remembering Jonathan


    ((((((Hugs to All)))))) ~

    I felt that it was time to start a new thread for Jonathan, as I am beginning to gather memorials for his garden.

    Yesterday, I ordered the Angel Wing stone shown above.

    I also ordered two tiles on wrought iron stands, which read, “Because someone we love is in Heaven, there is a little bit of Heaven in our Home.” One for Michael, one for Jonathan. These will be placed in Michael’s room.

    For their gardens, I ordered solar roses in white and solar angels, which change colors, both on garden stakes, and two solar sculptures with a male angel holding an orb.

    It may be dirt with sparse vegetation now, but at least Michael’s and Jonathan’s gardens will be filled with light.

    Michael’s waterfall and fountain are working well now. It still needs to be drained and cleaned, but for now, we’re happy that it’s functioning. The plants surrounding his pond need to be removed and replaced. The message stones we placed in the small retaining wall are faded after 16 years of weather. I used to retouch them every year, but then, life intervened with Jon’s many hospitalizations and intense care needs.

    The problem is my back. Yesterday, I tended to Michael’s pond, as well as other stooping, bending, lifting tasks, and my back is very sore. Today, I changed Jim’s sheets and cut his hair. More bending and stooping and being on my feet.

    So, I just cannot do what I want to do for Michael’s and Jonathan’s gardens. Our weekly gardeners could do some of the work, but the rest will need a landscape contractor.

    For now, I will be comforted seeing light in their gardens and do what I can to tidy up.

    Thank you all so much for your love, prayers, support, and friendship. We love you all, and pray for you and your loved ones.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  3. #2
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    Rose, you have made a really good start. You have the plans all in your head and some of the foundation has been laid. That is a lot.
    Virginia

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    ((((((Virginia)))))) ~

    Thank you so much! It does feel like a little progress, and it's very important to me to honor Jonathan and Michael in any way I can. This is my path to comfort and peace, and then to acceptance and adjustments.

    The solar angels and roses arrived today. Tomorrow, Jim and I will put them together, and I will place them in Michael's and Jonathan's gardens. One of the angels with the orb sculptures was damaged. The orb had been unglued from the sculpture. But the glass orb was unbroken. And I have John's Gorilla Glue, which he's going to use on our kitchen cabinet glass panes someday. The other sculpture was fine, so I placed it on the deck to get full sunlight. I hope it glows tonight.

    Nancy visited today for Jim's blood draw. We were discussing toilet seat padding for Jim, because he sits so long on the toilet now, and he's bony. The gel pads I ordered didn't work for him. Nancy just peeked into the bathroom and recognized the change.

    "Oh, that looks very nice!" she said.

    "It used to be Southwestern, then it became a mess with Jon's and Jim's stuff everywhere." She nodded in agreement. "Now, it is 'Spa Blue' for Jim's crossword relaxation, while nature takes its course." She laughed, and then she agreed with me that the change was needed, and that the crossword book was a great way to keep Jim's mind sharp.

    Then, she stopped in front of Jon's room and asked if she could go in, and I said, "Of course."

    She blew a kiss toward his bed, still untouched since April 12. I started to explain, "I just can't ..." and she hugged me.

    At one point during Jim's blood draw, we started talking about our families and childhood. Nancy said, "I always wanted a sister, but I got two brothers!"

    I took her hand, "You have a sister. Right here. I'm your 'older' sister."

    "You're so right, Rose," she said as she hugged me again.

    Nancy is not just our nurse, she is our family.

    With new managment's unrelenting horrible changes to our home health care agency, more work and pressure is being piled onto our nurses. They have to order their own supplies now, instead of getting them directly from the home health pharmacy. Our wonderful supply liaison has been reduced to nothing, and the nurses have to order patient supplies on their own.

    When her daughters and husband asked Nancy why she doesn't just retire, she replied, "Because I love my patients, and I love my job."

    Nancy intends to work as long as Jim needs her. When Jim was diagnosed in January 2017, Nancy held me as I sobbed and begged her to be Jim's nurse, when he needed home health. She promised me then that she would stay with us.

    She drove 14 hours straight to get home on Thursday. That night, she texted that she'd be out the next day, Friday, to draw Jim's blood. I texted her that she needed at least a day to recover and to come today, as we'd originally planned. That is dedication.

    How blessed we are to have Nancy's love and care. I'm looking forward to including her in our garden plans. We'll have to invite her and her husband over at night to see the glowing angels and roses.

    So, each step is one step forward. I am working on my PTSD, and I'm making some progress. That means that I am suppressing things, because I need to function, but I'm also addressing things when I am able to do so.

    It's a balancing act, oftentimes precarious and always difficult. I know from experience that I need to do what I'm doing to motor through this first year and the raw, painful sorrow I feel. There are "Firsts" facing me in the future, but I will deal with them as they come.

    Today, I have lights for Jonathan's and Michael's gardens, and I'm grateful for all of our blessings.

    Thank you to all for your love, prayers, support and friendship. We love you and pray for you and your loved ones ~

    Love & Light,



    Rose
    Last edited by Earth Mother 2 Angels; 08-10-2019 at 05:43 PM.
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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    So nice to see a new thread dedicated to Jon's memory. I adore the Angel stone! So perfect! I love that you have made such a connection with Nancy. So sorry for my delayed reply!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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    ((((((Hugs to All)))))) ~

    funnylegs4~

    It's good to see you here. I was concerned a little by your absence. I hope that everything is going well for you. Know that my prayers are always with you.

    Today, I assembled all of the solar angels and roses and placed them in Michael's and Jonathan's gardens. I hope that they will light up tonight after a day of sun. The moon will be full tomorrow, so their gardens will be bathed in moonlight too.

    The other memorials will be delivered on Friday. I know where I want to place them in Michael's room, which he now shares with Jonathan.

    These expressions of honor and never-ending love help me to heal my broken heart and feel that I am connected to Jonathan and Michael.

    It has been slightly over 4 months since Jonathan's passing, and it still seems like it was yesterday, or a thousand days ago. Feeling these simultaneously describes grief. Like it just happened, but he's been gone so very long. How is it possible?

    Michael's waterfall stopped today, so I scooped out more gunk and tapped the motor. Nothing. Then, a few hours later, the waterfall began flowing again.

    And that is an incredible metaphor of my life.

    Thank you, funnylegs4, and all of our beloved friends here, for your love, support, prayers, and friendship. Our prayers are with you and your loved ones.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((Hugs to All)))))) ~

    funnylegs4~

    It's good to see you here. I was concerned a little by your absence. I hope that everything is going well for you. Know that my prayers are always with you.

    Today, I assembled all of the solar angels and roses and placed them in Michael's and Jonathan's gardens. I hope that they will light up tonight after a day of sun. The moon will be full tomorrow, so their gardens will be bathed in moonlight too.

    The other memorials will be delivered on Friday. I know where I want to place them in Michael's room, which he now shares with Jonathan.

    These expressions of honor and never-ending love help me to heal my broken heart and feel that I am connected to Jonathan and Michael.

    It has been slightly over 4 months since Jonathan's passing, and it still seems like it was yesterday, or a thousand days ago. Feeling these simultaneously describes grief. Like it just happened, but he's been gone so very long. How is it possible?

    Michael's waterfall stopped today, so I scooped out more gunk and tapped the motor. Nothing. Then, a few hours later, the waterfall began flowing again.

    And that is an incredible metaphor of my life.

    Thank you, funnylegs4, and all of our beloved friends here, for your love, support, prayers, and friendship. Our prayers are with you and your loved ones.

    Love & Light,



    Rose
    Hi Rose,

    So sorry if I alarmed you! I will try to check in more often. I just had a crazy busy week of many many good things (one of which may lead to more money for me, yay!) So I had less time online. I’m doing more disability awareness and I had to write letters of recommendation for my friend’s job applications and I wanted to make sure they sounded good. Believe me if my health was not good or something of that nature I would try my best to give a good heads up. Please try not to worry. I greatly appreciate your concern though!!! You’re very welcome!

    Yes grief is funny(by funny I mean strange dear) like that. Always a shock yet so far away. So nice for the boys to share a room. I hope the solar lights are a success and that you find a solution to the termite problem. I’d invite you to stay with me during extermination, but my place would not be Jim accessible either. So glad the blood work was a good result!
    Last edited by funnylegs4; 08-15-2019 at 03:45 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  13. #7
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    ((((((funnylegs4)))))) ~

    You have been busy! I'll pray for whatever it is that will give you more money to happen! I'm just very happy that you are okay. And, I can't help it, I'm a natural worrier.

    GARDEN LIGHTS AND MEMORIALS

    The solar lights work perfectly! The white roses are gorgeous all lit up. The angels change colors, red, blue, green, yellow, purple, pink ... it was like a little light show for us, as Jim and I stood at the patio door watching them changing. We felt comforted and pleased that we were lighting their gardens. It has been so drab and dreary.

    The garden stake for Jonathan, similar to the one I got for Michael 16 years ago arrived today, along with the heart stone, and the indoor tiles and stands. They look very nice and are well made. I placed the garden stake in Jon’s currently makeshift garden.

    Sample of the Garden Stake Tile:

    Screen Shot 2019-08-16 at 4.06.29 PM.jpg

    Sample of the two (One for Jon and One for Michael) table top tiles with stands:

    Screen Shot 2019-08-16 at 4.05.49 PM.jpg

    The actual Angel wing heart stone we got for Jonathan, which is on the floor under the gold wrought iron tree:

    Screen Shot 2019-08-08 at 10.52.27 AM.jpg

    PHOTOGRAPHS

    Yesterday, I tackled the multitudinous photos we had stashed on our office shelves. I separated them into categories, but I'm not sure what to do with them now. Of course, the largest stacks are photos of Jon and Michael through the years. Should we ever be able to have a celebration of life service for Jonathan, I have all the photos to tell his story.

    The other day, while talking about Jonathan, I told Jim that "somewhere, there's a photo of Jonathan and me sitting on a bench in a church lobby.” I found it. It was taken at my former spouse's wedding. Michael wasn't well that day, and a respite RN stayed with him at home.

    I told Jonathan that he was going to be my escort to his dad's wedding. He was so chuffed. His smile just radiates in this photo, and I remember how cooperative and helpful he was. He could walk unassisted then.

    I recalled being introduced to the minister by my former spouse's bride, as Jonathan's mother, and I added, "And Michael's mother, who can't be here today.” He looked at me strangely, as if an ex-wife attending her ex-husband’s wedding is a weird thing.

    The bride then joked, "She's here to give the groom away."

    "I already did that," I quipped. "Good luck!"

    There are scads of photos of the boys as infants, toddlers growing into an adolescence, then young men.

    I found a photo of Jonathan in our living room showing off the new clothes I'd bought for him (and Michael) for the summer: the wildly patterned longer shorts of the 80s, a tank top, and new sneakers. When Jim looked at this photo, he just rejoiced. "Look at Jon! Standing up and showing off his duds! That's fantastic! That smile!"

    Of course, there are many photos of Jonathan and Michael together, always smiling, laughing, happy to be together.

    MEMORIES

    While cleaning out the closet is a time consuming project, I realize how important it is for us right now to share these memories. Looking at these photos reminds us of the wonderful life our boys had, despite their disabling condition, their seizures, their hospitalizations. We had so many triumphs, so many incredible moments and experiences, so much love and laughter, and celebration. We always made the most of every minute we had.

    If I could do it all over, there are so many things, which I would change. On the other hand, there are so many things I wouldn't change.

    Girlfriends

    Today, I also remembered that Jonathan had a girlfriend named Patty. Actually, Jon was a babe magnet, and the girls in his class and workshop fought over him. I'm not kidding. But Patty was his true love. In the photo I found, Patty is standing beside Jon in his wheelchair, with her arms around his shoulders, and her head resting on top of his head. Their smiles tell the story. They were about 22 then and had known each other for 12 years.

    Michael also had a girlfriend in his class named Julie, who lived in a foster home. She was deprived of affection, and Michael gravitated to her. Michael's teacher once told me that during nap time on the mats, Michael and Julie fussed unless they were next to each other. He told me that they spooned and fell asleep. They had known each other for 15 years.

    I can't even imagine how much Jonathan and Michael longed for Patty and Julie after they were separated by programs and adulthood. I would imagine that by now Patty and Jonathan and Julie and Michael are reunited, as they were the same ages and also had lots of health issues.

    As Jim was looking through the photos today, and cherishing every one of them, he said, "Rose, you gave them a great life. Look how happy they are! Look at how many different things they did."

    Last photo: Christmas ~Jonathan, 4 years old, and Michael 3 years old, sitting at their new table and chairs. We gave Jonathan a toy piano. In the photo, he is delighted and beginning to play the piano, his fingers on the keys.

    Is it any wonder that Jonathan adored Elton?

    There, you have a good portion of the paths I've been taking over the past few days.

    Nearly half a century in photographs and documents. It's a lot to process, but it seems that circumstances dictate now that we process it anyway.

    I'm downsizing, as well as clearing the way for a termite extermination as well as reviewing the past to help me cope with the present.

    I have thrown away many things after revisiting the issues around them. This means that I am letting go of past hurt and pain. Letting go is important to healing.

    Thank you for taking the time to read this very long post! And for your love, support, prayers, and friendship. We love you all and pray for you and your loved ones.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  15. #8
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    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((funnylegs4)))))) ~

    You have been busy! I'll pray for whatever it is that will give you more money to happen! I'm just very happy that you are okay. And, I can't help it, I'm a natural worrier.

    GARDEN LIGHTS AND MEMORIALS

    The solar lights work perfectly! The white roses are gorgeous all lit up. The angels change colors, red, blue, green, yellow, purple, pink ... it was like a little light show for us, as Jim and I stood at the patio door watching them changing. We felt comforted and pleased that we were lighting their gardens. It has been so drab and dreary.

    The garden stake for Jonathan, similar to the one I got for Michael 16 years ago arrived today, along with the heart stone, and the indoor tiles and stands. They look very nice and are well made. I placed the garden stake in Jon’s currently makeshift garden.

    Sample of the Garden Stake Tile:

    Screen Shot 2019-08-16 at 4.06.29 PM.jpg

    Sample of the two (One for Jon and One for Michael) table top tiles with stands:

    Screen Shot 2019-08-16 at 4.05.49 PM.jpg

    The actual Angel wing heart stone we got for Jonathan, which is on the floor under the gold wrought iron tree:

    Screen Shot 2019-08-08 at 10.52.27 AM.jpg

    PHOTOGRAPHS

    Yesterday, I tackled the multitudinous photos we had stashed on our office shelves. I separated them into categories, but I'm not sure what to do with them now. Of course, the largest stacks are photos of Jon and Michael through the years. Should we ever be able to have a celebration of life service for Jonathan, I have all the photos to tell his story.

    The other day, while talking about Jonathan, I told Jim that "somewhere, there's a photo of Jonathan and me sitting on a bench in a church lobby.” I found it. It was taken at my former spouse's wedding. Michael wasn't well that day, and a respite RN stayed with him at home.

    I told Jonathan that he was going to be my escort to his dad's wedding. He was so chuffed. His smile just radiates in this photo, and I remember how cooperative and helpful he was. He could walk unassisted then.

    I recalled being introduced to the minister by my former spouse's bride, as Jonathan's mother, and I added, "And Michael's mother, who can't be here today.” He looked at me strangely, as if an ex-wife attending her ex-husband’s wedding is a weird thing.

    The bride then joked, "She's here to give the groom away."

    "I already did that," I quipped. "Good luck!"

    There are scads of photos of the boys as infants, toddlers growing into an adolescence, then young men.

    I found a photo of Jonathan in our living room showing off the new clothes I'd bought for him (and Michael) for the summer: the wildly patterned longer shorts of the 80s, a tank top, and new sneakers. When Jim looked at this photo, he just rejoiced. "Look at Jon! Standing up and showing off his duds! That's fantastic! That smile!"

    Of course, there are many photos of Jonathan and Michael together, always smiling, laughing, happy to be together.

    MEMORIES

    While cleaning out the closet is a time consuming project, I realize how important it is for us right now to share these memories. Looking at these photos reminds us of the wonderful life our boys had, despite their disabling condition, their seizures, their hospitalizations. We had so many triumphs, so many incredible moments and experiences, so much love and laughter, and celebration. We always made the most of every minute we had.

    If I could do it all over, there are so many things, which I would change. On the other hand, there are so many things I wouldn't change.

    Girlfriends

    Today, I also remembered that Jonathan had a girlfriend named Patty. Actually, Jon was a babe magnet, and the girls in his class and workshop fought over him. I'm not kidding. But Patty was his true love. In the photo I found, Patty is standing beside Jon in his wheelchair, with her arms around his shoulders, and her head resting on top of his head. Their smiles tell the story. They were about 22 then and had known each other for 12 years.

    Michael also had a girlfriend in his class named Julie, who lived in a foster home. She was deprived of affection, and Michael gravitated to her. Michael's teacher once told me that during nap time on the mats, Michael and Julie fussed unless they were next to each other. He told me that they spooned and fell asleep. They had known each other for 15 years.

    I can't even imagine how much Jonathan and Michael longed for Patty and Julie after they were separated by programs and adulthood. I would imagine that by now Patty and Jonathan and Julie and Michael are reunited, as they were the same ages and also had lots of health issues.

    As Jim was looking through the photos today, and cherishing every one of them, he said, "Rose, you gave them a great life. Look how happy they are! Look at how many different things they did."

    Last photo: Christmas ~Jonathan, 4 years old, and Michael 3 years old, sitting at their new table and chairs. We gave Jonathan a toy piano. In the photo, he is delighted and beginning to play the piano, his fingers on the keys.

    Is it any wonder that Jonathan adored Elton?

    There, you have a good portion of the paths I've been taking over the past few days.

    Nearly half a century in photographs and documents. It's a lot to process, but it seems that circumstances dictate now that we process it anyway.

    I'm downsizing, as well as clearing the way for a termite extermination as well as reviewing the past to help me cope with the present.

    I have thrown away many things after revisiting the issues around them. This means that I am letting go of past hurt and pain. Letting go is important to healing.

    Thank you for taking the time to read this very long post! And for your love, support, prayers, and friendship. We love you all and pray for you and your loved ones.

    Love & Light,



    Rose
    Hi Rose,
    You’re very welcome! Thanks for the prayers! Hoping to maybe have news on that by the end of August. I completely understand. Unfortunately I’v become a bit of a worrier myself after my friend had his stroke etc. Experiences like that do things to a person... I’m so glad the solar lights work! I love the photos of the memorials. They fit perfectly! I also love your descriptions of the family photos with the boys. I feel like I know both boys so personally from those images alone. The wedding cracked me up too LOL. Your boys had a more full vibrant life than a lot of people. Bless you for giving them that life! Your boys are a testament that all life matters regardless of disability. I wonder what became of Patty and Julie and if they are still alive….?
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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    They were so close in age that someday they will kind of run together in your mind I suspect. I wonder if they favored? You have done a lot of work, but it seems to be helping you, at least over time I hope that it will. The gardens are going to be beautiful. You chose the stand and table top tiles just perfectly. It is great that you are doing this to remember your wonderful, sweet boys. You and Jim will be able to spend many peaceful hours in the garden.
    Virginia

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  18. #10
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    Rose, it strikes me again and again how what needs to be done turns out to be what YOU need. I am just imagining all the photos you describe - the life you gave to Jon and Michael. And the wedding scene is so funny! Actually, the bride sounds great. As you said, good luck to her, poor dear. When my Mom died last year, the first thing that my sister and I did was go through photos. Then on the one year anniversary of her death two days ago, Natalie and I did this again together. I visit Mom in her photos and I know you will do the same with Jon and Michael. It's letting go and drawing closer at the same time. I send you our love from the lake in Quebec! xoxo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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