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| Dawn |
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Posted:04/05/2005 4:38 AM |
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ATTN: Every parent having lived Rhabdoid...
I just wanted to say that Danielle brought up a very good point... Let me elaborate.
I don't want Danielle to stop posting. She brought up 'connection'... I wish I had more to talk about to connect with the parents of survivors, but I just don't know what it's like to live a day in their shoes. I know that I would give anything to have my son in my arms again, but I have people telling me how lucky I am that he isn't here suffering. I don't know how to take it sometimes. I know it must be a struggle. I have talked with Lisa about this very issue. She explained how some times things can be difficult. It's just hard for me to imagine. Maybe because I am not there, I don't know what it's like; but because I don't have Chayton, it would be worth the struggle to me. Of course I can say that because I am not living it. Darrell, on the other hand, feels that after hearing all he did (3 years ago) that it is better this way. He still wants his son back, but he knows we will all meet again. I think it's safe to say that there is no wonder we have a different outlook between different families when we have differing perspectives in our own home.
I remember how I had hoped that Chayton would be standing one day next to Michael and Sean, cancer free. I think because I 'talked' to Lisa and to Danielle. I guess I got my wish, just not the way I had imagined it. Maybe I am the lucky one, I don't know. I just feel bad because it's tough to see every point of view and keep our own individuality. I don't like hurt feelings. Someone ;) emailed me tonight and said that I am like them... I don't feel good when people are upset. That person is more right than they know!
I think I have cried more in the last two weeks than I did the week after Chay passed. Sounds strange, but I was WEIRD because I didn't know how to handle bereavement then! I remember telling people at his funeral not to cry for him because he wouldn't have wanted that... he was always so happy. What people must have thought of me!? (Well, I have an idea...) But my own family (extended) wasn't even there for me; how could a complete stranger be?!? Anyway, I just wanted to let you know that I still have those feelings, but I am not letting them run my life anymore. It's time for me to 'buck up' and deal with it. I was so depressed for three years, I never thought I would see the beauty in the sky again. I did, though. It just took time. I will probably always cry for my son, I am just learning to do it better now.
I also wanted to say, and Lisa knows this, that Dr. Bendel came to me when Chayton was ill. She asked me if I wanted to meet their little survivor. A little boy named Michael Woodroffe. She said that his mom would be happy to talk to us. Because of the uncertainty of the outcome, I had said no at the time. She also gave me another mom to talk to who had lost her child. I had still told her no. The reason I didn't want to talk to them was for my own selfish reasons.
Let me explain. I felt that if Chayton survived, I didn't want to feel guilty with the other mom. I also felt that I wasn't ready to meet a survivor because 'what if my son doesn't survive?' I wondered to myself if I would hold it against Michael. (A little boy who had done nothing wrong but beat the odds). I know you are probably wondering how a parent could think this way, but I just wasn't ready. I didn't want to harbor feelings of envy if that would be the case because it wouldn't be fair to Lisa or Michael.
I have to tell you, though... shortly after I told Dr. Bendel no... we had to take Chayton to clinic one day. We were checking in and through the door walked a mom and a little boy. I had paid so much attention to Michael on the Rhabdoid Kids Page that I knew in an instant who this little boy was. I knew he was 'The One!' and my heart nearly jumped right from my chest. Lisa looked at Darrell and I and I saw her take a second look. I was suddenly shaking... wondering if I was ready for this moment. Guess what?!? She knew EXACTLY who Chayton was. She talked to us, never once rubbing anything in, like... look, Michael beat it, Chay can too... or anything. I don't know what I thought she would say, but I remember she said everything right. It wasn't long and we were talking and even though my son was dying, she AND the other mom really helped me in many situations. I never felt angry about Michael or anything. I felt, and still feel, like he is a little boy who knows what my son went through for the most part. I have a respect for Michael that he probably won't understand until he is older and realizes what all he went through by looking back.
I know I just went on and on, I just wanted to say that although we are on opposite sides sometimes, we have all lived through a nightmare. Some of us still grieve, but even as a parent of a survivor, I can only imagine that it's never over. I know even with Chayton gone, the first time one of my other children came down with the flu, I was ready to rush them to the ER and possibly to the oncologist. I could barely take it. And when Sabre was born... I'll just tell you that she has already had MANY CT scans in her short life. I'm beyond it now, but I still live it. I can only imagine if Chayton were still here.
Thanks for letting me get that out... and I am sorry if I made any of you uncomfortable. I just needed to say the pain is still here, I'm just focusing differently. I need to because I need you to understand where I (personally) am coming from. Please, if your child is a survivor OR an angel, don't take offense. My tone is very open hearted and earnest. ~ Dawn
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| Danielle McCauley` |
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Posted:04/05/2005 6:01 AM |
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Oh Dawn,
I am sitting here with tears running down my cheeks wishing more than anything that I could reach out and hug your soul. I am profoundly impacted by what you have written tonight and want you to know that I think you are a brave woman to write so eloquently what you are feeling.
As I have said to you in private emails, I struggle with the questions you do...why does one child survive and another does not? Why is one child profoundly disabled by treatment and one child not? I have no answers.
I have to tell you that I know that Chayton is standing next to Sean...well lying on the floor with him as he plays with his musical toys (he can't stand)...I feel his presence deeply...and yours.
I cannot begin to answer your question as to what is better...I only know that our hearts are so full of love for our children that you can only wish for what you don't have somehow...whether it is survival, or a meaningful life.
I am often racked with guilt over the idea that perhaps if I hadn't pushed so hard for Sean's treatment when they told us to take him home that he would have passed away but lived in spirit a more profound and meaningful life...this is what I think on my darkest days.
On my best days I know that in Sean's short life (and in Chayton's and every one of our children), they have made more of an impact on the world than most will make in 100 years of living. Anything I have done with our foundation is only as a result of our son and I make it a tribute to his heroic spirit. I know your efforts are a tribute to Chayton and his spirit lives on through your work.
Dawn, I am so very sorry for your loss of Chayton and want you to know that I am deeply touched by this note. God bless you for having the strength to write down on 'paper' what you are feeling.
In hope from your friend,
Danielle McCauley\
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| Jazmine's Mother |
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Posted:04/05/2005 1:03 PM |
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Wow! I say wow because we really are connected in the feelings that we have experienced. The guilt, the envy, the hurt. Second guessing every decision made then and even today. Not wanting to talk to other parents. I too felt it all and am still feeling it. I even got 'cancered out' so to speak. Feeling like no one understands, no one knows the debt of the hurt and injustice of it all. It took me a long time to get to the point of discussing Jazmine's situation. Thank you for putting your feelings out there so that everyone knows that we truly do share the same emotions and are 'connected' no matter what the outcome is. \
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| Kelley |
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Posted:04/05/2005 5:34 PM |
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I am so proud of both of you. The strength coming from your words is amazing. We all really do have a connection.
I remember when we found out the type of cancer Collin had and the severity of it that I didn't want anyone else to even know the name. I didn't want others to know more about it than me. I was so afraid that I would be the only one thinking he had a chance when everyone else knew that he wouldn't make it. I finally worked those feelings out and now I want everyone to know exactly what he has, how awful this horrible tumor is and what all these children must go through.
Thank you ladies for expressing your deepest thoughts. It truly does help to share. Thanks for being here.\
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| Lisa |
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Posted:04/06/2005 1:05 PM |
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I've just finished reading several posts that really hit home with me. I too remember when the doctors gave us the diagnosis that Ruby had Rhabdoid. Their outlook was very grim but we refused to give up hope. When we would talk about her getting better, I could see the doctor's faces & I knew they thought that we were crazy & that our baby didn't have any chance of surviving. Of course now I know they were right, but hope was a hard thing to give up which of course we eventually had to as she deteriorated.
Another thing that I read that I can relate to is not wanting to talk to parents of survivors. Don't get me wrong, I'm very happy for them that their children survived - I really am. But on the other hand, I have such feelings of jealousy toward them. They have what I want - their baby alive & well.
Before Ruby died I met a mom of a daughter who survived cancer, though it was not Rhabdoid, her daughter was given a very poor prognosis. Well, this family had always been very, very religious and so of course when their daughter got sick, they put a lot of stock in their faith. Their daughter is now 3 years clean. I totally agree with the power of prayer as I have faith in God also. I prayed so hard that Ruby could be cured that I don't know how God had time to listen to anybody else's prayers.
But the fact that this other family's child was healed & mine was not, I used to wonder & I know it sounds crazy now, but I wondered if maybe their child was healed because they were in better standing with God than we had been.
Well, I just wanted to share these things. Please post if you had any similar feelings. For some reason, it helps to know that others are feeling the same way.\
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| Rhonda |
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Posted:04/06/2005 4:47 PM |
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Hi there,
You don't know me, but I read these updates daily and my heart bleeds for each and every one of you. A year and a half ago I lost my almost two year old daughter to rhabdoid cancer. For 4 months I watched her quickly deteriorate to nothing while doctors (after reporting me to social services for starving and mistreating her - 'a big mistake' was their apology) told me that they were doing all they could do and I would just have to watch her pass. And I did just that. I sat back and turned on my family for pushing to take her to the ER -- what good would it do? I yelled, they said they can't save her. I turned on my friends for assuming that I was okay although I didn't cry. After all, what did I know about grieving? I 've turned on my husband for not reading my mind when I'm thinking about her, I've turned on my own sister for what I thought was her 'rubbing it in' that her son was so beautiful and looked just like his cousin.
Losing a child is by far the absolute worst thing that could possibly happen to anyone, and I am eternally thankful that there are parents out there that have come so close only to have God smile on them and restore the brilliant life force in their babies. This is what keeps me going - reading about strong people who are helping me (although they may not know it) come to grips with the reasoning of cancer and children.
What Dawn said about just having Chayton back would be worth the struggle is so true. While Emma was sick all I wanted was for her to be in peace -- the last night she was alive was so difficult for her that I prayed for God to take her and make her better. Now, as you can all imagine, I am kicking myself for that. How could I have been so selfless? I want her to be with me again -- I want to hear her sing the Dora song and I want to see her eat her peanut butter M&Ms - even if it means I have to live in a hospital for the rest of my life and give up everything that I have just to be with her.
I don't mean to step on the toes of the parents of survivors. I truly have the most respect for you, but hindsight is a wonderfully dangerous thing. I wish I had given Emma's surgeon the okay to rip out her entire tumor (he questioned it because it was wrapped in her nerve sack at the base of her spine and would've paralyzed her) and she might still be with me! I am a selfish woman, but the selfishness comes from the love of my child.
Please Please Please don't take offense - I want each and every one of you to know that you are kindred spirits to me and without you I may not have made it this far. I know living with the cancer is rough, but living without your child is hell. I want you all to know that I pray for each and every one of you.\
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| bradleysmomsherri (guest) |
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Posted:06/27/2007 11:58 PM |
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dawn,
thank you so much for saying what some of us never have been able to express
p.s I miss talking to you so much
your close long distant friend
sherri
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