Wednesday, November 11, 2009

Life

Tracey's youngest son Corey (who I have mentioned once before) is 16. He also has duchenne muscular dystrophy. Muscular dystrophy is a degenerative disease that attacks muscles...eventually freezing them into place. That is the cliff notes version. While some boys (primarily boys) live to be 30, usually life expectancy is late teens, early 20's. After Tracey's divorce, Corey and Kayla (18) went to live with the ex. Unfortunately during this time, the ex hasnt cared for Corey the way a mother should or would. I could list some pretty sad instances of that, but I won't right now.

Corey is in the hospital. Last week they called an ambulance to pick him up. He had been sick with cold/flu like symptoms for over a week. The ambulance was more feasible bc his legs are frozen in a triangle position, and it hurts to move him. He has not left his bed in almost 2 years. While the doctors have not given us a definite prognoses yet, Tracey received a call today that he needed to come to the hospital right away to discuss end of life, DNR, etc. Tracey was working 2 hours away, and should be back soon.

Corey is awake. But his lungs are having trouble breathing for him. This is such a hard time for Tracey. As many of you with kids can imagine (even those of us without). I was doing good until today. I think everything is catching up with me. There are so many mixed emotions inside. I broke down putting up the Christmas tree bc I didnt know if it was selfish of me to celebrate while he is hurting. Of course Tracey told me that he loves the tree and it helps him to keep his mind off of things.

We aren't going out of town for Thanksgiving like planned. And I feel bad for being a little sad about that. But I completely understand!

Also on the table is the possibility of the ex losing custody of Corey due to child neglect. And that could open so many different things.

I have also been trying to find out about burial arrangements if it comes to that.

Wow.

With all that said, you guy's know that I don't believe in worrying too much about any given thing. Life has a funny way of sneaking up on you...and the stuff you worry about never happens, and the stuff that you never worry about smacks you in the face! So we are taking one day at a time. I just wanted to share with all of you so if something does happen...you knew a little of the back story!

Love you and thanks for reading,

Amy

26 comments:

  1. Oh Amy, HUGS!!!! Corey, Tracey and you are in my prayers. I hope everything gets better. You are doing the right thing getting things researched to make it easier if something does happen. You are in my thoughts dear. Love ya.

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  2. Hi Amy,
    This must be a very difficult time for your family! My thoughts are with Corey, Tracey, and you.

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  3. I'm so sorry to hear that you and Tracey are going through such a difficult time. Both of you (and Corey) are in my thoughts & prayers. I know how extremely difficult in can be to sit back and feel helpless as someone you love slowly starts to slip away and there is nothing you can do about it (I had to experience that with my mom earlier this year). You being there for Tracey in whatever way you can is the best thing you can do.

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  4. I am sorry to hear that his son isn't doing well. I can't imgagine how hard and complicated it must be to navigate the possibilities and deal with the realities. Just know that a lot of people are thinking of you and sending positive thoughts to Corey and Tracy and you. I'd hug you if I could too!

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  5. I will remember your family in prayers. It stinks to have to deal with this. Especially if this could have been prevented by the ex. I pray that whatever happens to Corey, that you can help Tracey find peace.

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  6. Amy, I am so sorry. I don't have children, but I am in tears right now trying to comprehend the sorrow that Tracey must feel. Your support and wonderful attitude towards life - hence the Christmas tree - is a blessing for Tracey, I am sure. My thoughts and prayers are with you, Tracey and of course young Corey.

    Insert Hug here <3

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  7. Amy, Im sooo sorry to hear about this. I will definatly keep Corey, Tracey, and yourself in my prayers. Please let me know if you guys need anything Im not that far away from you even if its just someone to go walking and talking with it always helps to get things off your chest. you have my # its on facebook.

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  8. Oh Amy... I am so very sorry. That is so hard - and all of you are in my prayers. Tracey is a strong man, and he has you to be strong with and for him in this time which is a blessing for him. We're thinking of all of you...

    S

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  9. Amy, I am hoping for the best and only the best. I know that these things do come up, sometimes very unexpectedly. I hope that Corey isn't suffering with too much pain. Both of my parents are in very ill health as well as my Father In Law, & any of them could go at any time, but to lose ones child, is something that no parent should have to endure. My heart, thoughts & yes, prayer's go out to all of you at this rough time.

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  10. I am so sorry to hear that! Please know that my thoughts and prayers are with you all through this trying time.

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  11. Amy,
    My thoughts and prayers are with you and Tracy. My daughter (who was 8 months at the time) had brain surgery last year. It was the most awful feeling as a parent being so helpless. Be strong, loving and supportive for Tracy.

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  12. I can only imagine how difficult this situation must be for everyone, I'm so sorry. I'll be sending good thoughts your way. Make sure you and Tracy give each other extra hugs.

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  13. Amy and Tracey:
    (((((((((((((hug))))))))))))))))))
    I'm so sorry to hear about this. I truly believe that things will end up the way that they should. Thinking of you three....

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  14. Oh Amy - I didn't know one of Tracey's children had this awful disease. My heart is so full of sadness for you guys (and of course this little guy) and what you are going through. It makes me give thanks for my children and how healthy and strong they are.. but my thoughts are with you both. xxxxxx

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  15. I love you guys. My heart is with you and Corey. How's he doing today?

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  16. You, Tracey and his children are in my prayers. I am so sorry for all that is happening right now. God is with all of you and will help to guide you. Stay strong and take care of yourself during this time. Tracey needs you and you need to be there for him. The best way to do that is to take care of yourself.

    Sandy C

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  17. I am so sorry, Amy. You, Tracey, and especially Corey are in my thoughts.

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  18. My heart goes out to Tracey and to you Ames... Keep us updated, Corey's in my prayers.

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  19. I am praying for you both and Corey. I am a mom and am crying even thinking about the possibility of losing one of my children. Please try to take care of yourself. It is so easy to put ourselves on a back-burner when others need us. If you take care of yourself, you can help take care of Tracy.

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  20. I'm sorry to hear your family is facing these challenges. You're in my prayers.

    Jami

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  21. I am so sorry to read about Corey. I hope he is painfree and your family is in my thoughts.

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  22. Amy - Please let us know how Corey is doing. My heart aches for Tracey and you- I can not imagine. I'm sure you are a big source of strength for Tracey through this.
    You are all in my thoughts.

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  23. Amy - my thoughts and prayers are with you and your family. As a mother of two, I still can't imagine what Tracey must be going through. And don't feel bad that you have mixed feelings about holidays, etc. Even through bad times, the world keeps turning and it's only natural to want to move on with it. Hang in there.

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  24. My advice is burial planning is DO IT NOW! In researching grief and death for a class of mine, it says loved ones who make those deicions are too torn up and upset to make those final arrangements that NEED to be made. So they say if you have a warning, plan it now, and then at least the worry and financial burden of that is GONE and you can enjoy their last days.

    I'm paying for Joe's cremation and ceremony next week. It's a tough thing. My mom doesn't even want to talk about it. But w/ what he has, it can be so sudden and I don't want any of us to have to worry about that when we should be mourning. Get what I mean?

    My heart can't even bear the thought of losing a child, even if they gave you warning. I can't imagine what he's going through and the child neglect issues. OMG! I think you said you don't believe in God, persay (if i spelled that right) but I will pray for you guys! I will mostly pray that you annd Tracey have the courage and calmness to deal w/ what you've been dealt.

    And you should absolutely decorate for xmas. B/c it might be the last one this kid sees. I don't know if there's a possibility of him coming home with you, but I'd even decorate his hospital room w/ a little tree and stuff incase he doesn't make it TO xmas.

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  25. I know I'm still doing my catching up with your posts, but this really strikes home for me and breaks my heart. In the line of work that I'm in, I mainly deal with ambulatory (meaning those who can walk of their own free will, sans assistance like wheel chairs) adults who have disabilities ranging from head trauma (not born with) to moderate CP. Growing up, I never thought too much about these as being disabilities because my mom's brother who is closest in age to her (they are all younger than her) has mild CP and is fiesty as all hell. He was born breech (aka: feet first, during the time that they would yank a baby out with foreceps and not do a C-section, so most likely a lot of his problems stemmed from the actions at the time of his birth, but he never cried over spilt milk) and has one leg longer than the other. He makes jokes like, "Me sense of humour is great, it's my sense of balance that sucks," and when asked how tall he is, "On which foot? I'm 6' on the right, 6'1" on the other."

    But over the years I have met people in all different programs in all different situations, from being severely non-verbal autistics who are very ambulatory, the ones who screech and run away and people glare at their day program coaches... to those in wheelchairs who are working perfectly fine in the noggin but have a body which has betrayed them.

    And it hurts my heart so much because sometimes the only time out of the house that they get is in their program, with their coach. (I have a 4 to 1 ratio because my group is more "high functioning" but there are plenty of 1 on 1s that I've known who are similar in experience to Corey.) Long story short, there is the assumption that the care providers are mishandling them or being mean to them, all these horrible stories on the news about the one person who yanked on the arm of someone to get them to walk faster. I feel as if I am being so closely watched by the public, like they have assigned themselves to watch out for my group's safety when I'm doing a perfectly fine job of that.

    But I know that some of the 1 on 1s become very close to their day program coaches because of the neglect they get at home. Granted, I know how hard it is to have someone with special needs pulling on you for support (and learning to evenly spread my attention between 4 people during the course of my day), so I give consideration to the parents, but it's terrifying what goes on behind closed doors sometimes. In my job, I'm a mandated reporter. I can be held accountable for abuse at home if I don't report any symptoms that might present themselves during the day when one of my guys is with me. I've had to attend meetings and face parents and care givers and the heads of the regional centers who determine if abuse is taking place and give my account of bruises I've seen or behaviours I've witnessed.

    I feel horrible for Corey. I know so many disabled adults who live with their parents and love them but don't want to cause trouble or get them in trouble even when they're being abused or neglected. So many that suffer in silence until so much has been lost. It is NOT the way that the world should work. Ever. I hope that everything has been resolved by now. I am so sorry that Tracey has to be the suffering non-custodial parent who is going to go through so much with this even though I'm certain he has caused none of the pain. It's just so wrong.

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