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    Tuesday, March 21, 2006

    An Unbearable Sadness

    Warning: This is not one of my usual lighthearted posts.

    I'm not sure I'm going to be able to write this, but I'm going to try. A friend of ours had a son, who was diagnosed with Tri-Lateral Retinoblastoma one month after his first birthday. His form was so rare that he was the first person to have that strain. The doctors gave him hope and treated him until he was near death from all of the chemicals in his tired little body. Last May they gave him 30 days to live. The doctors stopped all treatments and gave him medications to alleviate his pain. All the family rallied to say their goodbyes and make him happy and comfortable.


    These pictures were taken last fall.




    Miraculously, he rebounded and was on the upswing within two weeks. His cancer cells went from 89% to 3%. Doctors decided that the chemotherapy had been working and continued on.

    This little man never complained or whined. He let everyone poke and prod him until there were no places left for them to do so. He always had a smile or a giggle for everyone.

    He made it through the summer with ongoing therapy living a semi normal life. In September the doctors decided that they would do a bone marrow transplant using his bone marrow that had been harvested when the cancer cells were down. This meant that he had to go into 100 days of isolation. The only people that could see him were his immediate family members.

    Because he was going to be isolated during his second birthday, it was decided to have an early party for him. There were over 40 people that attended. He enjoyed a pinata, a bounce house, baseball and the usual birthday fun. He smiled the entire day.

    The transplant was performed and things went well. Near the end of his isolation the doctors decided that the transplant had not worked. This was near Thanksgiving so the staff told his parents to take him home.

    Thanksgiving went well considering that everyone knew that his days were numbered. He had a healthy appetite and ate lots of mashed potatoes and turkey. He appeared to be a happy and healthy young toddler.

    A few days after Thanksgiving he went into a coma and died a few hours later in his sleep.


    This one was taken 5 days before he died.


    This picture was taken the day before the one above.


    This is him and his mother, again taken
    just days before he passed away.





    The whole family is still having a tough time getting by without him. They spent the last year of his life taking care of him and every need he had both physically and mentally. His mom just wanders around the house looking for something to do. She feels lost and alone. His dad has responded by working 16 hours a day he says to keep his mind off of things. His 17 year old sister has it just as bad. She spent every minute she could with him when she wasn't in school.

    My problem is that I don't have the right words to give them to comfort them. I just listen, nod and smile. I also tell them that I cannot imagine what they must be going through. The father says that if one more person tells him that his son is in a better place he's going to deck them. He says that his son's place is here with him and his mother. The mother is somewhat religious and tried to hold onto her faith but says that faith is fading quickly.

    I have needed to get my thoughts out about this for a while. I didn't post this because I try to keep things light and upbeat here. As I write this I'm crying and realize that this whole ordeal was a lesson for everyone. Let those that you love know it and show it every time you can. Squeeze your loved ones until they can't breathe just to show them you care.

    24 comments:

    sugarpunk said...

    hey sg... my only advice i have for you

    go to them.. hug them and cry with them.. acknowledge how much it sucks for you so that their pain must be a millions times greater than you couold ever imagine..

    let them know no matter when they need a friend to call.. because all you can do is hold someone that has lost what they so badly want a chance to hold once more...

    (by them i mean the entire family) they each need to know they have a friend to hold... that way they dont have to rely soley on the other for that comfort.. they need the break from the pain .. and putting it on each other time and time again has to be unbearable...

    im very sorry.. i cried the whole time wishing that i could hold one of those people even for ONE minute...

    crabcake said...

    My heart hurts now. He is so precious and so perfect in these photos. I just want to scoop him up.

    You don't have to have the right thing to say, kiddo. The love and the grief that you feel is so obvious. They know you'd make it all better if you could.

    I am in tears and I never met them. But that's the thing about being a parent and seeing this little one in his overalls so cute and cuddly. I never had to meet them. My heart is there.

    This is what every parent fears most. And I will pray for them and for you, every night before I go to sleep.

    I feel so sad. No wonder you've needed to talk. Next time, don't you hold back. You just let it go. Because I promise you every single person who comes here will understand and like me, they're going to want to just hug you and tell you go ahead and feel what you feel.

    They will become very angry, sign gurl. That's only natural and they have to go through it. You just hang in there. And when you need to talk, you do that.

    SignGurl said...

    Sugar~That was the most sound advice anyone has given me. Thanks.

    I hope for your sake that this isn't something you have gone through.

    wmy said...

    Hey there hon..Life sure can sucker punch ya sometimes huh? What a beautiful little guy! I had tears just rolling down my face while reading this...btw, sometimes just nodding and listening while they talk is all you can do for someone at that particular time. It is so true that we are never guaranteed tommorrow, hang on tight to those you love. I will keep you and that family in my prayers.

    SignGurl said...

    Crabcake~Thank you so much for the kind words. This has been on my mind for months. I just hate to bring people down. My only hope is that people, myself included, will remember to show love to those that are close to us.

    WMY~Where have you been? I missed you. Thanks for thinking of this family. Things are much harder for them now than when it happend.

    barman said...

    I was being strong as I read this but in the end it got to me. I so feel for the family to have someone so special be taken from them so young. I struggle with the same things all the time. I friend from High School times recently had his Dad pass away from lung cancer. I was very thankful that I was able to make it down for a while during the showing. I said a little but was just there. I never know what to say. I feel so ackward. I feel like I am going to say the wrong thing like they have gone on to a better place.

    I have to believe that just listening to what ever they wish to share when ever they are ready and provide a hug or a sholder if it is needed will go a real long way.

    Please do me and everyone a favor. Never hold back. If you want to blog something like this then please, please, please do it. I do not know how much help I can be but you can email me any time about what ever also. You are among friends girl.

    SignGurl said...

    Barman~It's hard to know what to say and maybe, like you said, just being there is the best thing you can do. Thank you for listening/reading.

    The Taker of Gist said...

    :(

    Big Pissy said...

    What a beautiful little boy. Such a sad fate for him....
    I'm so sorry for you and this family. I don't know that anyone can ever really say the "right" thing at a time like this. I'm sure the family just appreciates you being there for them. Hugging them, holding them when they cry....

    It is really painful just looking at the pictures...knowing that little guy isn't around anymore.

    I can't even begin to imagine what that family is going through....

    DZER said...

    *big ole hugs*

    Suze said...

    Jenn, you need to air your thoughts every now and then to keep your sanity. I know you must be feeling and hurting for them.

    Sometimes when words fail a hug and an ear to talk to really helps. You are being supportive and I'm sure that is what they need right now.

    *hugs & kisses*

    SignGurl said...

    Thank you all. I really do feel better getting this out of my mind.

    I am closer to the extended family than the immediate family. They seem to be having just as hard of a time. Unfortunately, they are not a touchy feely kind of family. I just try to listen. That's all I've been able to do.

    Nonny said...

    I am normally a very stoic, non-emotional person. But anyone who doesn't cry at that poor little boy and his family are heartless bastards.

    It's good to get things off your chest and you're advice is right on. I will hug my children extra hard today.

    I will think about that little guy all day now.

    ell said...

    there are just no words . . .

    Fridaysweb said...

    SG, when my husband's brother passed away, everyone kept asking his parents "how you doing?" "are yall okay?" and things like that. It's one of those natural things we all say. My MIL finally told me one day that those were the stupidest words she'd ever heard. While I still feel it's one of those things that we all say and most of us mean and want to know, I understand where she's coming from. I made the mistake of asking her that, one day, recently. She was having a bad day and she snapped at me (which was okay), "How the hell do you think I'm doing? I lost my baby, even if he WAS grown!" I held her hand (which is a stretch because she and I aren't incredibly close) and let her cry. I never apologized for my words because we never know what's appropriate and what's not in these situations. Words are hard to come by when all you can feel is sympathy and our own heartache. I think just saying anything you can think of is okay. They may not always be the "right" words, but honestly, there are no "right" words to be said in this case. You are a good friend, SG. They'll see that, no matter what :)

    MamaKBear said...

    Oh, sweetie...This has got to be one of the saddest things I've ever read. Yes, I am crying too, and my heart hurts for a little boy that I've never met. The looks of him in those pictures are so deceiving, aren't they?

    Big hugs for you, and for his family. Other than that, I really don't have anything to say here that hasn't already been said.

    I'm going to hug my babies now.

    Top cat said...

    thank you for sharing this very difficult post.
    There are no words one can say, nothing can fill the void or replace the spirit of the little bundle of joy.
    thank you
    tc

    Madame X said...

    Puts everything in to perspective doesn't it?

    Thank you Jenn...I have to go hug my kids.

    Chrissie said...

    It's just not right.

    Lara said...

    I think that the best thing you can do for them is to let them know that it's OK to talk about him any time they want to. That you haven't forgotten, and you know it hurts, and you are ok with them letting you know when they are hurting.

    My first pregnancy ended in a miscarriage... after several years of infertility. I was devastated, yet after the initial condolences, no one acknowledged that it had ever happened. I know it's easier for others to acknowledge a loss when the is a visible loss.... but I have to assume that the feelings are similer... the need for people to let you talk about the loss... and in cases like this, to also remember the wonderful person he was.

    I think faithwise, the hardest part comes because people think that God controls everything. They try to make it better by saying the stupid things like... "God wanted him to be with him", "He's in a better place", etc. I believe God could control everything, but because of giving humans the option to choose, he gave up the actual control of everything. He may know what is going to happen, but he doesn't cause it. Why did he allow this? Who knows... it's part of that whole 'freewill' thing.

    But he also allowed everyone who knew your friend's son the joy of knowing such a wonderful little person, even if for such a short time. And I think that the gift of this son deserves to be celebrated... remembered... honored. God never promised we wouldn't have pain... but he did promise that he'd provide the strength to get through it. I believe that comes via our faith, our friends, and in this case, the memories of this amazing little boy.

    Give your friends the freedom to remember him... out loud. Tell them you will never forget him, and you don't want to. Talk about him whenever something reminds you of him. Celebrate the person he was... don't just talk about the hurts now, but remember the special times. It will let them know that it's ok for them to talk about him, and to remember the joys he brought. It may hurt to talk, but believe me, the hurt isn't gone if you don't talk. And if you don't bring him up, they may not feel that they are allowed to. They'll think of him nonstop... but they will hold it in more. Tell them to stop you if you do the wrong thing... that you feel the hurt in your own way, just as they feel it in their way... that you want to be there to share the hurt as well as celebrate his life by rememberhing him.

    Ok, I wrote a book here, sorry.

    honkeie2 said...

    Wow, my heart goes out to your friend and their family. It is always the hardest when they little ones have to go first. I would be lost without mine.

    cadbury_vw said...

    i mourn for a little boy whom i have only known through the pictures you posted

    a little boy i know from knowing my own son - who also wore glasses at that age

    and from knowing each other little boy who made me laugh and smile

    and hope

    i don't know you very well, and don't know the boy's family

    and i only have the tears i just cried

    i'm sorry for the loss

    it must be unbearable

    Tumbleweed said...

    I could not read that, sorry. He is so cute and I know you were going to say he died. I am way to sensitive, but send my love to them!!

    Laurie said...

    Oh dear God, that broke my heart...