Monday, August 31, 2009

Absent

So today I feel like a big failure. Ally woke up all on her own at 6:40, went to the bathroom, and then promptly burst into tears that she didn't want to go to school. And that is just an awful way to start the day. She said her belly hurt and I could tell that she really didn't feel well. I kept watching her eyes and she was falling back asleep, tired etc. The doctors told me when the kids ANC gets low like hers is (20) that they pretty much just feel cruddy all over. Jerad and I both pushed and pushed...she missed the bus....Jerad was going to drive her....then no. And she fell back asleep. She woke up around 8:30 and had a small temp (99.3)...well the doctors don't consider her to have a temp until 101, but it was something. I gave in and let her stay home. Within the hour she had perked up and was playing with Evan and Carly. They all went outside for a little bit and that is when I realized that she really should have been in school and I tried to push her again, but failed.

I feel so bad about this whole thing. It is killing me. I want her to go, of course, but it is also very hard to put a crying 2nd grader on the bus. A crying 2nd grader that has leukemia. If I could just get her there, I know the kind staff at Valley will be taking good care of her. And if not, I only live 10 minutes away. I guess I just need to be more forceful. There are going to be plenty of days that she will miss because she has to and I would rather avoid days like this. I know she doesn't feel 100%, but she was well enough to sit at her desk and do some work.

I don't know how to handle this whole situation. I know one thing is certain...the stress level of handling this every day is going to send me over the edge. Before bed she was crying a bit about going tomorrow already. So now I ALREADY have the bad feeling in my stomach and I will be the one that doesn't sleep tonight. And I will get to deal with this all again approximately 5 minutes after I have woken up tomorrow. (along with Jerad, of course) I hate the feeling of dread. And I will have to rearrange my day 100 times to be accommodating. And that is one of the hardest things behind this whole disease. I can never plan for anything. I always have to have a plan, and also a back-up plan, and simple things like will my family have milk for their cereal....well it may or may not happen. Right now I am back to feeling so mad about this whole situation that I just want to throw everything around me right out this window.

I will gratefully accept any ideas on how to get through this situation. I feel as if I have made a major mistake and set a terrible precedent today. I can't take it back. Maybe someone in the army can enlighten me.

Luckily, I did get to cool off my anger a little today. Only to be engulfed in a completely different sort of emotion. We had the Marcy Cup golf tournament today. Lots of women playing golf together to honor my Mom and also raise money for charity. It was the most beautiful perfect weather and I know my Mom arranged it for us. My Dad spoke to the group about how much golf meant to my mother and there was nothing she would rather see us do than golf in her name. I noticed that my golf shoes weren't fitting me right, so I grabbed my Mom's shoes. I walked the course today and tried my best (which wasn't too bad after I had only played once in two years). I thought about my mom approximately every three minutes. Actually, I could almost hear her talking to me the whole time. And there I was wearing her shoes....walking the course that she had played hundreds and hundreds of times. I felt very close to her today. She also channeled some good shots to us and the clutch team of me, Melissa (my sis), Julie Hess and Kim Grant finished only one over par. I was proud of that score! But mostly I was proud just to be with all the wonderful women that she counted as her friends. And to hear stories about how much they all loved her too. Mary Nutter...every time I see this friend of my moms I could just burst into tears. She planned this event...along with my Aunt Connie, Cindy, and the nice people at the Grandview Foundation. Mary has kept me under her wing...all through my Mom's illness and now all through Ally's. I am so grateful to have her to lean on.

One more quick note....I have to say Happy Birthday to our friend Larry Booher today. He is such a loyal friend and member of Ally's Army. Larry is one person we can always count on to do anything to help our family. So much that we always joke he is our "knight in shining armor" because he always seems to rescue us from difficult situations. He is also taking on a huge responsibility of helping us to raise money for Ally's walk on October 1. He has helped me more than anyone with this.

Now, I am saying a prayer that Ally wakes up and feels good. I hope the morning is easy for all of us. I need to find some strength to deal with all of this. I found this while searching.......

Be strong and courageous, and do the work. Don't be afraid or discouraged by the size of the task, for the LORD God, my God, is with you. He will not fail you or forsake you.. 1 Chronicles 28:20 NLT

13 comments:

  1. Janel, Great photo of the three of you! I am impressed with the golf attire too. Glad the day provided some relief...I'd like to play next year.
    I don't have any inspiring advice about how to get your kids to school, considering I have absolutely NO experience with that one. What about talking to the other ALL parents who have dealt with this? I know that no two kids are alike, but maybe they could help.....
    hang in there. Hoping this day is better than yesterday.

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  2. It was a beautiful day! Perfect. It was neat to hear which holes Marcy hated, which wild flowers she loved and the fact that she did not like it when Janel would not watch her ball and then spend time trying to find it. (Which we did many times yesterday!) I know Marcy was with us when shots headed for the woods, conveniently hit the fence post and bounced back into play! A day I will remember for a long time. Thanks team and thanks to the women that planned the event! It was a nice tribute to Marcy and knowing the money will go to a good cause was the icing on the cake.

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  3. Terri Barnett ShumakerSeptember 1, 2009 at 8:00 AM

    Janel it is very hard when a child does not want to go to school and must make it even harder when your child has leukemia. I know that is makes you feel like the worst parent possible to argue with your children about going to school and it seems just easier to give in and let them stay home but then that makes you feel terrible too. I have had this same arguement with my boys too and they have missed alot of school some years and then towards the end of the year it was a "have to go" thing because they had already missed so much earlier in the year.
    I hope that the days get easier for you and the whole family.

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  4. Lurker here. I am not a mother, and I have never had to raise a child, so take this for what it's worth, which probably isn't much. What if you just sort of subtly nudge her? When she has these sorts of days, maybe when she starts to feel better as the morning goes on, you could sort of plant a bug in her ear with, "I wonder what all your friends are doing right now," or "Gosh, you and your buddies would all be in art class right now. I wonder what fun project they're all doing right now," or things like that. Maybe she'll decide on her own that she's missing out and will ask to be taken to school. But maybe not. That seems really oversimplified now that I read back over it. See? I told you! No kids, no experience! But I know you'll overcome this. Think of all the other things you've overcome thus far. All of those were obstacles that you didn't initially know how to overcome, but you did. You'll figure this out, too. Ally is always in my prayers, by the way.

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  5. Hang in there. You will have good days and bad and that's ok. You and your family have a lot going on right now. Lean on the Army.

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  6. Janel, never second guess yourself. There are no mistakes here, only learning experiences. You are doing an AWESOME job. You are amazing and inspire us all. Almost every child at one time or another doesn't want to go to school, and not very many parents have the answer to that one. I think as long as you are firm and loving, you can't go wrong. Some days the firm might win out and she goes. Some days she might stay home and not even be that sick. (I've done that with my kids!) Remember, it's only 2nd grade and she WILL be going to school, just mabye not a full schedule. Flexibility is key here!

    I guess the only thing I can think of is some kind of incentive chart w/ stickers. Then on days she goes, she receives a sticker and for X number stickers she gets to pick her favorite activity to do w/ a parent or friend or pick her favorite toy, etc.

    Whatever you do, it will be the right thing because you have the answers in your heart, even though you might not know it at the time.

    LOVE YOU

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  7. Janel, you are not a failure, nothing close to it, you are survivor in many ways. I am glad you had a great day for the golf tournament, wished I could have been there because your mom and I had many special days on the golf course. As for the school issue, you did what you thought was right at the time. It might get easier to decide, it might get harder, but never ever think you have failed. It is tough getting any kid to go to school, especially a sick one. You are right though, once they get there they usually like it. Just hang in there, get as much sleep as you can and try not to get into what I call the "what if" game. At night encourage Ally about the next day and remind her that all the people at school know her name and they will miss her very much if she is not there. Good luck, we are all very proud of you and Jerad. I will keep you all in my prayers and here is hoping that tomorrow is a better day.

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  8. I wish I knew the right words of comfort for you Janel. Instead, I'll offer what I DO have...my prayers and positive thoughts for you, and Jarrod and Evan and Carly and Ally.

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  9. Dear Janel,
    Not in your vocabulary. FAILURE IS NOT AN OPTION!
    You and Jerad are handling each day as it comes , and doing a fine job at that. Yesterday was like being on a roller coaster for all you. The Army is with all you. We stand ready to do what ever when ever. I can always be reached on my cell and run for whatever you need. It was really great you see you and Melissa yesterday, I know that we all felt your mom throughout the day. One day at a time with your friends and family at your side. :)
    Hugs to you.
    Mary

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  10. I am a lurker, I won't even try to pretend like I know how I can help you, I don't even know you... but one thing I think is universal among all of us that are working through tough times (I have TWO children with Cystic Fibrosis, one of which is looking at a lung transplant in November if he is WELL enough) is this... PLEASE PLEASE PLEASE don't give yourself a hard time. Every step you are taking is difficult, and the last thing you want to do is ever give yourself a bad time for the step you take.

    When I even come close to thinking about what we are dealing with - really dealing with - I can't breathe. So to realize we are able to take even one step in our life, I choose to treasure it and not second guess or regret it.

    My heart goes out to you and your family and all of you are in my prayers.

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  11. Oh - and - random idea I did with my daughter when she was still in school. I gave her sick days! I had them from work, so I gave them to her for school. I said, you have X sick days and you can use them throughout the semester. You can use them, but once they are gone, they are gone. (Of course "real sick days" don't count). So, when she didn't want to go to school (we all have those days) and would ask to use a sick day (permission was needed, just like I had to do with my boss) I would be sure that she understood that this would gobble a sick day and is this the day she really wanted to use it? Sometimes it was, and sometimes she would say, "no, I will go today, I want to save it." I know Ally is young, so maybe this isn't good, but somehow knowing they "could" stay home is actually an incentive to go to school! Wierd, but true.

    Good luck to you - I will be watching and admiring your strength.. and sometimes using it to lift myself up :)

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  12. Don't ever say failure with all you are dealing with and Ally is too. Maybe you can tell yesterday was a freebie or a practice sick day. Tell her she was better in an hour so it wasn't really a sick day. Or be sure to take her to school when she does feel better an hour later. Maybe her stomach really does hurt that early in the morning. There are some great ideas from others above. I'm glad your golf tournament was such a success financially and emotionally. The picture of the three of you is great. Your strength is awesome.

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  13. It has to be stressful and overwhelming dealing with Leukemia. It's already overwhelming just being a mom sometimes, so when you add more complex issues on top of the regular ones, I'm sure you feel like the world is collapsing on you sometimes. I teach 2nd grade, and my advice would be to keep her home if she's not feeling well. It sounds to me that you had plenty of reason to keep her home with a low fever and low ANC. Believe me, when kids come to school tired and sick, they don't get much out of the day. I'm sure you and Jared work to keep her on track academically, and it sounds like she has a pretty good social group of her peers that she interacts with on a daily basis. I would venture to say that Ally knows a whole lot more about life than all of her classmates. She's learning patience, flexibility, courage, compassion, and loads more of the stuff you really want your kids to know at the end of the day. Don't stress about a missed day of 2nd grade! :o)

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