Quality of Life!

quality_of_life

Read that carefully. “Makes it easier to care for Ashley” .. so who is this for? There is no proof it will improve Ashley’s quality of life. How can we say that? That makes no sense since she is undiagnosed and we have no idea what her life will be like in the future. This is a claim of the unknown.

To mutilate this girl to make it easier to care for her … is something that we don’t do to our animals, let alone our children. If this is the reason, then it must be understood. “… easier to care for …” means that all these surgeries and treatments make it easier FOR THE CARETAKER. His words, not mine.

7 thoughts on “Quality of Life!

  1. We do such things to our animals. Spaying & neutering one’s pets said to be a good thing. Some of us remove the first part of our cat’s front paws. Things are done to farm animals as well, about which I know nothing.

  2. Okay, imagine you are Ashley’s caretaker, her family. It will save you and Ashley the stress of going through all the womanhood process in the body of a woman with an infant mind. How would an infant girl react to menstrual cramps without knowing what they are? She will cry, she will panic. If she has the mind of an infant, how do you explain her what it is? Will she understand you? no. she’s going to cry, she’s going to have mental fits, panic, not understanding what her body is going through and why she’s bleeding.
    Another fact: you may try to teach her to walk, but how, with an infant mind, can she perform it with always being at the same mental stage of crawling? Maybe its possible, I don’t know, but the reason they altered her growth spurt is to be able to lift her easily. So yes, some surgeries were performed to ease the caretaker in taking care of Ashley, but not once the surgery performed wasn’t for her benefit.
    And a mastectomy was performed not for the caretakers’ benefit, but to easy unnecessary discomfort to the girl.

  3. Tthe quality of Ashley’s life is directly dependent on her caretakers ability to care for her. My daughter is a similar case. She is four years old but will always be 2-3 three months old mentally. I spend a lot of time moving her limbs around for her (especially to music which she loves) just so that she can get some circulation and stimulation. She loves more then anything to be held and I treasure the bond that this makes possible. To me, caring for her is a joy and a pleasure, but I worry constantly about how that will change when she gets bigger. Simple things like moving her around the room to give her new scenery, taking her outside, bathing her, changing her diaper, will become unimaginably difficult. I am a single parent. I just want her to be happy, I want to be able to continue to do the things with her that make her happy. I don’t see why she should have to go through puberty when it won’t benefit her in anyway. Sure I may be able to tough it out, caring for her adult body as best as I can, but when I die I will have to trust that some stranger who doesn’t have the same inherent love for her, will undertake the burden in the same loving spirit that I would.

    I just found out about this procedure a little while ago, and to me it seems like a miracle. Suddenly I have a shred of hope that I be able to continue caring for her, that she won’t have to go to a facility when she gets too big.

    Also you seem to forget that parents are people too. Most parents are only responsible for a child until that child is able to take care of themselves, but for parents like us we will always be responsible for every aspect of our child’s lives. You don’t have any notion of the emotional and physical toll this takes over time, so please don’t belittle our desire to mitigate the stress. For most parents, it’s too much and they aren’t able to provide adequate care as a result.

    • I agree with you to a up until you mention that parents are people to. This to is true, but parents are not responsible for every aspect of a child’s lives because a child who do have the capabilities to do for themselves the parent is not responsible for that child.

  4. I don’t have to imagine being Ashley’s caretaker. I am the single father, and primary caretaker, of a severely disabled 19 year-old woman, every bit as disabled as Ashley, if not more.

    Illyana, you say “You don’t have any notion of the emotional and physical toll this takes over time …” How can you say that. I have been doing this for 19 years, over half of them by myself, you have been doing it for four years. Speak of that of which you know.

  5. I applaud you, single dad, for caring for your daughter for 19 years, or more! You have gone through tough times and you are proud of your efforts and dedication, as you should be. That does not, however, give you the right to judge others. I am referring to your comments to Illyana, not Ashley’s parents, just so that there is no understanding. She stated the assumption that most people have no idea. She is correct. You are free to say “I, the single dad, could never do anything like that and consider it wrong”, but do not judge. Other people are not you. They do not have the same outlook on similar situations, nor should they be expected to react as you do. Looking after a severely disabled child, like Ashley, like Pearlsky is excruciatingly, often unbearably and often impossibly difficult. I think you know that first hand. There is a reason it is called “extraordinary needs”. Why is your son in a facility and your daughter at home? Are you enjoying the implications?
    Some things or some ones have obviously been giving you the strength to keep going with Pearlsky. That is awesome and amazing. Not everyone is in your situation. Compassion, not judgement from you are more appropriate. Regret that supports are not always available for everyone. Consider why you are saying “well, I’m doing it, so you should too”. Are you feeling unappreciated? Do you want a medal? No, I do NOT AT ALL support the Ashley treatment. I support compassion and not judging others in very similar situations. And education for Ashley’s parents.

    • Ima: I am purely responding to the comment “You don’t have any notion of the emotional and physical toll this takes over time, …” which is directed squarely at me, and I feel is erroneous. I am not judging the author, but I am fully disagreeing with that statement.

      As to your statements and questions:
      “Why is your son in a facility and your daughter at home?” Because my ex-wife has custody of our son, she is incapable of caring for him at home, and would not give me physical custody (which would be exceedingly difficult anyway).

      “Are you enjoying the implications?” No. It is probably the most painful thing in my life how my son was taken away from me three times and is doing worse than Pearlsky is. It hurts so much that I don’t even blog about it.

      “Consider why you are saying “well, I’m doing it, so you should too”.” I do not see where I come out and say that, maybe I do, but it is not my intent. Just because I can care for Pearlsky without mutilating her body does not mean everyone can, etc. Not at all, but I think there are many other ways to deal, other than GA. There are those who do better than I and those who do worse (in my opinion), but I do not prescribe what others can do.

      “Are you feeling unappreciated? Do you want a medal?” I don’t now, nor ever have led my life to get the approval or appreciation of others.

      Thanks for the comments and the good words.

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