Dear Family

    • Anonymous
      August 10, 2008 at 12:57 am

      I’m sorry for today’s events. I am very embarrassed. I am also humbled by the kind remarks & PM’s that I’ve received. It was very nice.

      I’m not sure if I can participate on the site at this time. I think I need a bit of space. I feel like someone took something that is so valuable & private & just…I don’t know…pee’d all over it. I’ve expressed feelings here that my real life family knows nothing about. This place was a refuge, of sorts, for me…a safe haven, if you will. It just doesn’t feel like that right now.

      I’ll take back what I said about leaving & just say that I’m taking a hiatus.

      If anyone needs anything just send me an email. Or call me if you have my number.

      With my deepest apologies,

    • Anonymous
      August 10, 2008 at 1:19 am

      Kelly, you have no reason to feel embarrassed. You did nothing wrong. I understand what you mean about this being a safe place to be. And I also understand why you may feel a need to take a step back.

      I am hoping we can get back to that safe place again here. And when we do I hope you know we will be here with open arms….I hope you pop in and say hi…I will miss all you bring to the forums. I also hope that with the light of a new day tomorrow, you will feel renewed and able to return.

      God Bless

    • Anonymous
      August 10, 2008 at 2:18 am

      Well said Janet! ๐Ÿ™‚

    • Anonymous
      August 10, 2008 at 5:29 am

      I hope the time you need away to catch your breath is short. It is obviously how much of your heart you show in this forum. I have heard many, many times that in order to care greatly about something, one has to sometimes be willing to be hurt about it, because life is not always straightforward and misunderstanding and tough times happen. It is better to live life fully than to be scared to live. This stupid disease teaches us how important each day is and how important the times we have with friends and family. I know even though Emily is doing much better now, that you live scared about the future and about each change in schedule. I hope that if you take a break from this forum, that it is for you a vacation from worry a little instead of a time of more pain or a time of anger. We are your family and Emily’s family.

    • Anonymous
      August 10, 2008 at 6:56 am

      I sure hope you come back. You will be very missed in here! Hate to see all this happened. Really do! I am still and outsider in here and have not been in here long and buy what I read, I saw a misunderstanding that led to more than it should have. And we all have misunderstandings in even our own homes. So please hurry back! You will be missed in here!

    • Anonymous
      August 10, 2008 at 7:57 am

      It’s good that you have made the choice to take a hiatus and not leave.
      The knowledge you have because of Emily’s suffering has helped many in the past and will be needed for new members seeking help.
      Yourself, Dawn and WithHope, have helped many but are always there when a new desperate parent has a child with this terrible syndrome and comes to the site searching for help and answers.
      My thanks to all of you,
      Keep helping

    • Anonymous
      August 10, 2008 at 4:55 pm

      Glad your not leaving. Taking a break from this place will do you good. Come back when you feel emotional ready to come back we will welcome you back with open arms.


    • Anonymous
      August 10, 2008 at 5:21 pm

      Hi Kelly.
      I admire anyone who can admit a wrong. Why do you appoligize. You only did what others would have done.
      When I became a member of this site I was welcomed with open arms and one set of arms were yours.I have to remember I am human and life can be very painful at times. I am writeing this reply because my Great Spirit asked me to.
      I have been taught that there is a reason for everything and in time we will see the reason and answers.This week is my aniversity of my triple Bi-Pass and I feel very humble. The other day I asked my God why he was not useing me to help others. Then in a few mins he answered me. I am being used in many different ways. I need to remember that every time I reply here or anyone replys here they in some way are helping someone and doing the will of the great one.
      I had someone recentley attack me with words. this is not his 1st time. I wanted to attack back but I smiled at him walked away and silentley asked my father to bring happyness to him.
      An old indian said once. words of anger will go through you. But if you grab a word you have chosen to allow the anger to be yours.
      The people here and the ones still to come are a blessing from God. He has brought all of us together to give help to ease pain to bring hope and above all to share love.
      There will always be a bad apple in something but the only way it can hurt is if someone reacts to it.
      Kelly let the great one decide if you continue to give love and help and support. You and Dawn are what my beliefs call messangers. say a prayer for the one that is in pain and give thanks that you and others are doing the will of God and as you have seen you both are loved by many.I will close with what I asked a dear friend to do. Give a hug to your family and then look in the mirror. tell the pretty face you see how much you love her.and remember this is today. yesterday is an illusion and tomorrow is a mystery yet to be seen.Thank you and thank s Dawn for all you give and may the Great Spirit blessings be with you always
      Your Friend (Steve)

    • Anonymous
      August 11, 2008 at 12:08 pm

      [FONT=”Comic Sans MS”][SIZE=”3″]Kelly,
      You and Dawn have seemed to me to be like a warm bright cozy cabin on a cold dark scary night.
      Please don’t stay away too long.

    • Anonymous
      August 11, 2008 at 4:12 pm

      [FONT=Palatino Linotype]Kelly wishing you & Dawn the best, Just take a little time if you need a break away. Then hope to see both of you back. ๐Ÿ˜‰ [/FONT]

    • Anonymous
      August 12, 2008 at 12:05 am

      Kelly, I don’t know if you’ll see this, I tried to send you a PM but you were full!

      Take a break, we all need a vacation now and then, I’ll try to picture you and Dawn on a beach reclining with fruity drinks with umbrellas in them…..I could go on and on….;)

      But, please, after that break please come back to a family that altho slightly dysfuncitonal at times, will welcome you back with a big hug! Your passion, knowledge and support has helped many of us thru tought times and we will look forward to hearing from you again!

      Take Care, Marjie

    • Anonymous
      August 12, 2008 at 1:04 am

      Kelly and Dawn:

      There are times that I have to break from the forum, not because I do not appreciate all of you but because I too get down about seeing what my husband is going thru . Sometimes I just need a good cry and I do in private or with a friend. My time has not been my own lately with too much company and I am sure in some respect the company is good for him but we are both very tired; him for not getting his naps in or sleeping bad at night and me for entertaining all this company. I have a son and daughter-in-law who just left and they helped both me and my husband with things . They truely know we are both tired. so now we are getting ready for the last of our company and then it is our time . I got to golf with my son and our grandson who is only 5 and is learning to golf. He has improved alot and it gave me a break. I was very excited to see him golfing. We have 5 grandchildren and all of them have clubs.

      I never get tired of my own kids coming but somehow everyone now wants to see us. My husband said he is afraid they think he is going to die. So breaks are good. I will be back in touch after my company leaves, then we are off to Ohio for our 2nd opinion. We want to make sure nothing else is going on as it has taken so long to see any improvements.

      So, free your mind for awhile and do something for yourself that makes you happy.

    • Anonymous
      August 12, 2008 at 2:11 am

      See how many in here miss you! That’s a very good sign and shows that you are truely respected and cared for in here. I hope your time out right now is making you miss us too! ๐Ÿ˜€ In time I hope you will be back and with us again. So plezzzzzzzz come back soon. Missing you already!