Wednesday, August 12, 2009

Staring

Okay, so I don't want to make anyone sad or anything, but I know that I do. So sorry. Just apologizing up front because I am feeling sad today. Life is not a bowl of cherries...sometimes its the pits (I just got a card that said that...hah!) We are continuing our climb up the mountain of normalcy. Ally is doing so good. SO GOOD. Even better than she was last week. She is being goofy and doing silly dances and all the things I remember about my old Ally. My old Ally and wow I can hardly even remember it, but at times she comes back out. Everyone around her is noticing it. And if you think about, and think about that first month where she couldn't lift her head off the table, she was battling two things. First, she was still battling the leukemia cells in her body, and secondly she was also battling the effects of the chemotherapy. A double dose of HELL (no better word for it). So now, in my opinion, the leukemia cells are gone and she is really just fighting the side effects. And that has to help matters some.

Today, in our efforts to climb the normalcy mountain, I piled all three kids in the car and we did something very simple. We went to lunch. We went to Marion's Pizza, where I knew I could get a significant amount of calories into my little girl's body. I even let them get a COKE! (a rare treat) We played in the game room and Ally even won a stuffed animal from the claw machine for her little sister. In her former days, Ally was the QUEEN of the claw machine. She is the master. Then we got back into the car and drove all the way to Centerville to a toy store that has these things the kids are collecting: we call them squishies. I think they are actually called zoo mania or something like that. They are only 25 or 50 cents, but the kids all collect them and trade them, etc. Ally even spent some of her money from the hair fairy on a new art kit. A continuation of normalcy hit when the kids played outside for two hours with our neighbors the Holsteins and the Finns. Usually it is too hot, too cold, too windy, etc for Ally. But today...not a word. She just wanted to hang out with her friends. Just like old times. You can get the picture on how good she is doing.

Tea Party in the Tent
My heart is so happy when she is like this. I actually heard her humming yesterday...just walking around the house happily humming a little tune. Little things like that can make me weep tears of joy. She has absolutely no idea that this disease is life-threatening. She has no idea that it is one of the rarest things that can happen to a child. The innocence of kids is probably a great thing to deal with something like cancer. In simple terms, she just thinks this is the way life is. Well, sort of. She doesn't feel sorry for herself. She is not self-conscious of being thin or bald. She doesn't worry about things she will miss. Maybe this is also because she has the ultimate laid back personality, always has. She can handle this. Of course, she doesn't want to be poked by a needle or to be throwing up in the middle of the night, but for the most part she takes it all in stride.
Sometimes, though, no matter how good things seem to be...I still get hit with that punch-me-in -the-stomach feeling of sadness. Last night I was showing Jerad the blog entry made by Erin Cobb and there is Ally's beautiful picture. And every time I pull up our Light the Night page, well there is her picture again. My beautiful smiling girl who knew nothing about any of this. It just makes us so sad to look at old pictures of her. It is really a tough pill to swallow. It upsets everybody, I know. My Dad told me the same thing tonight. On a daily basis I really don't even notice the baldness..the skinniness actually bothers me more. Except when I look back....

And this brings me to my final thought for today. Over the last ten days, we have emerged from our bubble. The zoo, the toy store, Build-A-Bear, the ice cream store....and everywhere we go I see people staring at us. She always wears a hat, but they still see it. They can't help it, I know. It's like a car accident...you have to look. A sick child..people wonder. To us, it is so normal, even to her friends/our neighbors they don't even see it anymore. But in public, we can draw stares like you wouldn't believe. Sometimes I even think...oh wait, do we know them, are they looking at us because they know us?? And then I realize that is not the case. The other day at the zoo I looked over and Ally had taken her hat off. She was hot and needed a breather. I glanced around and everyone around us was looking. I quickly told her to put the hat back on. She said "Why?" And for a minute I couldn't answer her. What was I supposed to say...well, honey, because society would prefer if you have hair. I muttered something about making people uncomfortable and then she put it back on. So this is another thing I have weighing on my mind lately for when school starts. I hope those Valley kids just take a good look, because I know they have to, and then they realize that its just Ally. And hair doesn't really matter.

13 comments:

  1. Oh, those last few sentences make me sad! "Because society would prefer if you had hair"--I say don't make society happier by having her put her hat back on. I don't care if it makes them "uncomfortable". I know it's not my daughter going through this situation, but I don't think--or at least I hope--that they look because they feel bad, not because of some narcissistic ideal. How awesome that she doesn't care about people seeing her bald head! I wish we all had that innocence and hers will be gone before we know it. No one should ever make her feel bad for not having hair. I think once the kids at Valley get used to it like the neighborhood has, they won't think anything of it. She's just Ally, hair or not.

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  2. Janel, you should never apologize for being sad. This is a sad illness no matter how you cut it. You are entitled to rough days and are only sharing your experiences. We all appreciate your honesty.

    Before I was a mother I was a teacher. I taught first grade and though having 27 six and seven year old children in my care for 6 hours a day was tiring , I left each day with a renewed sense of humanity. Certainly young children can be cruel and may stare, but they are very easily redirected and taught compassion. Very often they are far more so than adults and Ally's spirit will allow them to forget about her illness and just see her. Be prepared for The Army to grow by leaps and bounds once school is in session.

    Always thinking of you,
    Amanda

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  3. I would never, ever make her put her hat back on because it makes people uncomfortable. People will look because it is not the norm, but then they will get over it. The kids at school will look, they may even talk about it, but then they will move on. I'm sure most of them have never seen a child Ally's age with out hair. They will be curious, they will look. The good thing is that Ally is Ally and she doesn't care. Look at how quickly all of our kids and the kids in the neighborhood adapted to it. It was almost instant. As Amanda stated above, what a great lesson in compassion for the kids (and adults)at school.

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  4. You, your family, and your little girl are amazing. Thank you for that post. It is important. This is all so important. I am so sorry that people have to look at your Ally that way. We can all learn from Ally's question of "why?". Because people don't understand, that's why. But that doesn't mean we or Ally has to change for them. She is educating, and through education comes attention, money, new medicines, cures....you know the story.
    My dad used to carry his chemo around in this walkman-type thing every month. He didn't lose all of his hair like Ally, but this thing was like a magnet for people. Like Ally, my dad's attitude was: here I am world, I'm fighting, I'm getting better, so if you want to help me, join me; understand me. He raised awareness by just being him. What a burden for a little girl, but I know Ally's up for it.
    So thanks so much for your post, Janel. It is heartbreaking, but important. Kids are great at support and acceptance, and I'll bet they are better at Valley than at Marion's, Kroger, or the Greene.
    I hope someday the question "why" never has to be asked because this disease is gone.

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  5. The tea party in the tent is precious. I love that picture. Sad days are part of this whole thing, I think. I hate feeling sad, but I guess it's therapeutic in a way. You have to get those feelings OUT. At the same time, I can't imagine watching your child deal with something so huge every day. Take courage - you are doing such an admirable job - all of you - and it will work for your good in some way. Love you ALL TONS!

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  6. I usually just lurk in the background, reading this blog and following the story. But today, I wanted to post a comment for everyone to think about.

    Maybe you should look at the stares another way. Maybe people are looking at your daughter and are feeling her pain and are sad for her. Maybe they are happy because she is obviously ill, but she is out and about. Maybe they are channeling their love and support your way. Maybe, just maybe, they are trying to figure out what has happened to such a young, beautiful child. Maybe, it is a positive thing to see a young child fighting with everything she has and winning and she is inspiring others with her spirit.
    When we are at the hospital with Matthew, and we see the other kids, the infants with IV's and such, we look because we care. We look because we know that while we have issues, someone else has more and we are blessed. We look because we care. Try to take a different perspective and never, I mean never, ask your daughter to cover her head. She is beautiful no matter what and she should never be uncomfortable about how she looks. If she makes someone else uncomfortable, my theory is that it is the other person's issue, not Ally's. Let her be who she is and let her be a child. She is loved no matter what.

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  7. Whoa, that was rough, I'm still choking back tears, for you, for Ally; it's one of those things you just wish so hard that no one you loved would have to have those feelings. I do strongly believe two things, one that this will make a good difference in all of your lives, maybe one of your children will go into healthcare that wouldn't have anyway, maybe they will start a camp for kids with illnesses, maybe you will get that RN you are becoming so qualified for, or maybe you all, especially your kids, are learning how to appreciate life more, and to empathize with others. Two, I think children are far better than adults in accepting differences, and appreciating people for who they are rather than how they look, especially those under third grade. Having taught 1 and 2 for six years, and now 3year olds to 6th grade I am always amazed at how much better they are at just getting on with fun than concerning themselves with hiccups like who has hair and who doesn't. I'm sure her fellow students will feel proud to be part of something as special as Ally's Army.
    Sending you tons of hugs, Janel. LOVE, Kate

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  8. Wow! Tiredmom30 took the words right our of my mouth(head, really)! I totally agree with her. I know when I see a child that appears to be battling cancer or has some sort of handicap I think, "God bless that child and their family". Just think of all the prayers and blessings that might be coming your way and you don't even know! As far as going to school..I give it a few days before everyone at Valley is use to seeing Ally bald and not noticing. Look at our neighborhood kids. They stared for a minute and then it was time to play!! She's a brave girl and will do awesome!

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  9. It is ok to be sad, you are fighting a tough fight. I cried when I read the blog and the comments. It brings back many memories. People will stare because they see a brave girl, and they are asking the same question we all did, "WHY this little girl, why any child or any adult for that matter?" They see how brave you all are. Children have a wonderful attitude and they are curious. As Jodi said, John educated lots of people with his "walkman". He had chemo 4 days straight and carried it with him. The kids at Valley will stare and ask questions but they will learn and be better for it. I know it is very difficult but you are all very strong. Ally is fighting and winning. My thoughts and prayers are with you always.

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  10. Hi Janel,

    This is Michelle, Steve McClary's sister. I just wanted to let you know that our family & our church family are praying for you guys. I follow your blog and am passing along update on Ally. I wanted you to know that there are a whole bunch of people in the Centerburg/Johnstown area praying & thinking about you guys.

    My mom has CLL and had to go through chemo in June. She sends her love & prayers too. Ally's story broke her heart, but also gave her the strength to get through the chemo.

    Just know that there are more people than you can even imagine thinking about your family and keeping you guys in prayer.

    All our love,
    Michelle

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  11. I found your blog through Erin Cobbs site and am praying for you and your little girl. I think you shouldn't worry about what society thinks. Let her be herself. She doesn't care that people are looking so you shouldn't either.
    My brother is in a wheel chair because he was paralized at age 17 and for the first few years he always got staired at and some people even came and asked. Though it made him uncomfortable he always answered and didn't let on that it bothered him and guess what... soon it didn't bother him a all and he is not afraid of the public.

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  12. Janel,
    I have been following your blog since your uncle Doug sent it to me the first week. I am your second cousin from Erie, Lynn McEnery. I don't think we have ever met but we received updates from your grandparents and Doug and Barb about your mom and were sorry to hear of her passing. Your grandparents have always had a special place in my heart and I got to get re-acqainted with Doug and his wife Barb and Stefanie since I live in Pittsburgh now and they were all down here for their cancer treatments, etc. I too am a cancer survivor.
    It sounds like you have some wonderful and wise friends. You are blessed. And its so wonderful of you to pick up the torch for the Leukemia walk. Many in your place would say "I can't deal with that right now", but you just added it to your plate, that is very full to begin with. Your mother is smiling down on you and your family; she is watching out for all of you and very proud as well.

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  13. Wondered here somehow and you blog is touching. I am currently battling cancer myself, I have to very young children and I guess I feel blessed that they are so young. Children are so resilient, they just have a different way of thinking what is normal. Please know that I am sending up prayers for your whole family. Huge hugs all around.

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