Page 1 of 2 12 LastLast
Results 1 to 10 of 11

Thread: A Few More Thoughts About Amelia - And a Tribute to Rose

  1. #1
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    954
    Blog Entries
    9

    Default A Few More Thoughts About Amelia - And a Tribute to Rose

    From my blog at https://donnathomson.blogspot.com


    The ethics committee of the Children's Hospital of Philadelphia must be feeling the heat. Their decision to refuse three year old Amelia Rivera a kidney transplant because of her 'mental retardation' has kickstarted a vigorous and coordinated response in the worldwide community of parents of children with disabilities. So far, a petition to the hospital has collected 27,811 signatures of those who would implore the Philadelphia paediatricians to reverse their decision on Amelia's transplant surgery.

    I have been a member of online parenting support groups for many years. I have made good friends of mothers and fathers of children similar to Nicholas. I have never met these internet friends personally, but that doesn't change the fact that I pray for their children when they are ill and I look to my friends in this community for encouragement and strategic advice when I need it. One of the most devoted and wisest mothers I have met online is a woman called Rose. This is what she wrote on one forum about the Amelia case:

    Amelia has an identified condition, which likely has a life span attached to it. My sons are undiagnosed, but that didn't stop medical and social services professionals from telling me not to expect my boys to live beyond the age of: 2, 5, 10, 13, 18, 21, etc. up to the present day. People defy the odds against them every day. But they have to be given a chance to defy those odds in the first place.

    To the social worker's query about who will administer Amelia's meds when she's in her 30's, my response would be, "Wouldn't it be glorious if Amelia's kidney allowed her to live to be in her 30's? Or what if she lived to be 20? Or even 10? Isn't Amelia entitled to that opportunity?"

    Who will take care of Amelia when she's in her 30's is a general question, isn't it? Her parents will have to plan for her future care, and whoever those persons are taking care of her will be responsible for her medication administration. Just as you have done for Nicholas, and every parent of a child with special needs must do. This social worker's concern is disingenuous.

    If Amelia's medical team presented solid reasons why medically Amelia isn't a good candidate for a transplant, then that would be worthy of consideration, of course. For example, if she is too fragile to survive the surgery, or if her condition would affect her body's acceptance of the kidney, or if she has a bleeding disorder, etc. Amelia's parents must be apprised of all medical obstacles to the transplantation, not left feeling that their daughter has no value, because of her condition.

    Rose is the parent of two adult men, both with an undiagnosed, progressive neuromuscular disease. One of her beloved sons passed away a few years ago; her other son is entirely dependent and lives at home with complex twenty-four nursing care provided by the family. Rose speaks from the battleground of love and dependency.

    All physicians treating people with disabilities, especially cognitive disabilities, should listen to parents like Rose. Otherwise, they risk forgetting that providing loving care for someone very dependent over time makes family members wiser and better equipped to make difficult treatment decisions. Now, I'll sign that petition. Tomorrow, I will blog about friendship amongst mothers.
    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


  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,040
    Blog Entries
    1

    Default Thank You

    ((((((Donna))))))

    My dear friend, you have me in tears.

    Thank you. I am honored and humbled by your tribute.

    Every battle I have waged for my children, I've waged for Nicholas, all of our CN children, and all children with special needs. If I can make just one step toward progress in services, education, medical care, transitional care, adult care, in home care, and inclusion, then I can die knowing that my sons' and my purpose on this planet were fulfilled.

    We must always remain hungry for knowledge to help our children and inform our difficult daily choices. I want it all out on the table, the good and the ugly. I want options explained to me in detail. I want time to do my own research and to connect with other parents for their experiences to assist me and my husband in reaching our decision. We have a right to these things; our children have a right to our full awareness and understanding of their medical condition, treatment, and potential dangers/outcomes. Their lives are literally in our hands.

    Moreover, we are entitled to respect by medical professionals, who should realize that any decision we make is difficult. There are risks to doing nothing, as well as intervening drastically. Choosing which path to follow is enormously stressful, painful, and frightening. Overall, we need compassion as we wander our way through this twisting and complicated journey.

    Amelia and her family remain in my prayers, as do you, Nick, Natalie, and your husband. All of you are teaching all of us right now. Thank you.

    May we meet face-to-face someday, Donna. :)

    Love & Light,

    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  3. #3
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    954
    Blog Entries
    9

    Default

    My Dear Rose,
    You will forgive me if I continue to quote you in my blog because not every parent is a member here and your voice needs to be heard. I would love to meet one day - I know that some of my favourite people here at CN2 have visited and continue to support one another in person and on facebook, etc. I will try, one day, to make that happen for us! Meantime, I will keep on checking in here for 'the wisdom of Rose'. xo
    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


  4. #4
    Community Member
    Join Date
    Oct 2006
    Location
    Arkansas
    Posts
    33

    Default

    Great piece. And I will be keeping Amelia in my thoughts and prayers as well.

  5. #5
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,040
    Blog Entries
    1

    Default

    ((((((Donna))))))

    I am honored to be quoted by you! And I am happy to contribute to the ongoing discussion through your blog.

    Remember the old days, when CN was active, and we had hundreds of guests every day? Parents, whom we have never met, who never joined, or never posted, followed the discussions here and certainly learned a great deal. It would be wonderful if we could do that again, because this is a unique resource, although not the preferred electronic/internet communication choice.

    As for wisdom ... well, I guess that is derived from experience, and I've had quite a lot of that. And I feel that it's very important that I share with other parents what I've learned, and what has and has not worked for us on our journey. Likewise, I have learned so much from other parents, and I want to share that information. The internet has been a fantastic venue for that interchange of experience and knowledge. And I am grateful for it, and I wish that it had been invented 30 years earlier!

    I thoroughly enjoyed your blog post about your Sisterhood. I'm so happy for you that you have your Sisters. I am blessed with a Sisterhood too, and I feel exactly the same way about them.

    And while it is different, because we connect through the internet, we are sisters too, as are each of the moms here (and our brother, Paul). We've seen each other through many crises, and we share a unique bond through our children. That's the primary reason why I miss our members posting here regularly.

    To meet each other and exchange real life hugs would be so wonderful. As my husband often muses, "You just never know ..." :)

    Bless you, dear sister friend ~

    Love & Light,

    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  6. #6
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    954
    Blog Entries
    9

    Default

    Dear Sister/Friend Rose! Yes, I do remember the old days here at CN so well. Before that, there was only the Question Forum in Exceptional Parent Magazine, which I (and I bet you too) devoured, searching for clues of familiarity in battles fought, won and lost. There IS something special about a conversation that is limited to shared experience and not mixed in with the daily lives of people who have never experienced loving anyone like our beloved children. But the internet casts an ever widening net which is good and bad. The thing about this forum (especially as it used to be) was that we had LONG conversations. Today's exchanges are shorter and less complex. My little dream is to do a 'road trip' and knock on the door of all my friends here on this forum just to give you all a hug. Someday.... xoxoxDonna
    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


  7. #7

    Default

    Bumping for Rose!!

  8. #8
    Community Member lacyndarella's Avatar
    Join Date
    Nov 2006
    Location
    Sterling IL
    Posts
    15

    Default

    Well said Rose. I couldn't agree more.

  9. #9
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    808

    Default

    Thanks for bumping this up. I don't think I read it before. I too look to Rose, and have such respect and admiration for all you do for eveyone around you including all of us on CN. Donna don't forget that pat on the back for yourself also. You have been a tremendous support also. It's funny how some of the women I admire and count on the most I've never even met. Thanks to all who take the time to come here and read our posts, pray for our children, answer questions, give us a little more confidence, and understand without any judgment.
    That said I'm quite familiar with the denial of services based soley on a diagnosis of a dissability. So many children past and present with down syndrome have been unfairly denied even simple but life changing procedures. It's better than it was back in the days when a child with Down syndrome was hidden and left to die in a hospital even though their life could ahve been saved. The battle of life and death, and someone thinking that they can judge the quality and length of a persons life still continues. No one can predict this even in the healthiest person. They could walk out of the hospital and have an accident or stroke and become totally dependant from that day forward. It's takes one family at a time making noise and fighting for their child like Amelias family. Praying that this all makes a difference.
    Mary Grace

  10. #10
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,040
    Blog Entries
    1

    Default

    ((((((CoffeeLover))))))

    Were you previously known here at Braintalk as Cool Angel? My memory is not as keen as it once was ...

    Welcome Back! And thank you for bumping this thread on my behalf! Very sweet.

    As ((((((Mary)))))) said, we are all in this together, and we're all sharing our experiences, wisdom, understanding, love and support with each other. It's a beautiful thing. It really is. To know that you can come to this sanctuary and unravel your knapsack-full of worry and woe, triumphs and victories, and be understood completely by others, who are rowing in the same boat toward the same destination, is a marvelous thing.

    The door is always open here, and the light is always on. You'll be welcomed with warm hugs, and we will hold your hand, we'll wipe your tears, we'll give you a moment of humor or a great recipe ~ thanks (((((((Donna))))))), we'll share our experiences and knowledge, and we will do The Dance of Joy with you, every time something wonderful happens in your world. We hate seizures and seizure meds. But we love poop. Not everyone can say the latter. That alone makes us pretty unique and special.

    I have searched for an update on Amelia beyond last year's post by her mom that Amelia is approved for a kidney transplant, when her kidney function is 10 percent. As of last August, Amelia's kidney function was 14 percent. Her mom is donating her kidney to Amelia.

    http://wolfhirschhorn.org/2012/08/am...es-part-three/

    A perfect example of what can be accomplished by voices united in advocacy.

    Love & Light,

    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

Page 1 of 2 12 LastLast

Similar Threads

  1. Replies: 1
    Last Post: 01-16-2012, 08:12 PM
  2. Rose
    By Donna Thomson in forum Child Neurology
    Replies: 1
    Last Post: 11-23-2011, 07:37 PM
  3. Thoughts on the Meaning of 'Home'
    By Donna Thomson in forum Child Neurology
    Replies: 1
    Last Post: 11-23-2011, 04:34 PM
  4. CP dancer's thoughts on CP
    By funnylegs4 in forum Child Neurology
    Replies: 0
    Last Post: 10-14-2011, 01:16 PM
  5. CP dancer's thoughts on CP
    By funnylegs4 in forum Cerebral Palsy
    Replies: 0
    Last Post: 10-13-2011, 02:22 PM

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.