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Jan 20, 2010

I Don't Want To Be Abby Anymore

From Michelle:

On Monday, Abby looked up at me with her big brown eyes. As tears quietly ran down her face and said, "Mommy, I don't want to be Abby anymore." And she meant it. At five years old she now understands that other kids don't spend their days enduring one medical procedure after another. She knows people feel sorry for her and that bothers her more than the medical tests. She doesn't want pity. She wants to be a normal little girl.

I wish I could stop all of this, and give her the break she obviously needs. The medications she is taking are draining all of her energy but if we stop them her pain would be crippling. Abby's has one appointment after the other lined up with specialists who are trying to help her regain her health. Spreading the appointments out is impossible so we are continuing to run the gauntlet.

Yesterday, Abby slept every time she was still for more than a minute. She is simply exhausted. I pulled her out of the car, sound alseep and took her into her hospital's sleep lab. Thanks to a wonderful friend, Jessica, she knew a lot of what was going to happen but even prepared, it would have been hard for most people to handle. She didn't like having sticky stuff smeared in her hair or having electrodes dotting her body. I thought the tube they put up her nose was annoying her but by morning we realized she had reacted to it and her lip was swollen.

She didn't want to do the sleep study but she did it without complaint. She was very quiet but allowed it all to happen. After a couple of last minute bathroom breaks, she laid still and went to sleep. She stayed asleep even when wires were being adjusted, until we woke her up in the morning.

On the way home we stopped to eat a promised breakfast. She seemed glad to be there but before we were finished she got a far away look in her eyes and the tears started trailing down her face again. Not bratty, "I didn't get my way" tears. They were quiet soulful drops no 5 year old should ever cry.

So now you know why I am searching for fun activities Abby can do when she is tired, often with little strength and fragile emotions. We need to find ways she can be a five year old little girl, instead of a battle hardened cancer veteran.

Would you help us think of LOW MAINTENANCE, LOW PREPARATION games, crafts, activities and things Abby can do? Use the Idea MckLinky list below to add your suggestion:


mooneyequalsmc2 said...

awww precious Abby. You sweet sweet girl. I am so sorry that you are feeling so low. I just prayed to God for you and I know that things are going to get better soon. You are such a brave little are stronger than any grown-up that I know...and I know a whole lot of grownups. I know that being YOU right now is hard...but everyone should strive to be as sweet and brave as YOU are. God loves you SO much Abby...and even though we have never met...I love you too.

Your friend in Maryland who prays for you every single day

Are These Kids All Yours? said...

How about edible playdough???

Anonymous said...

Breaks your heart when little ones say they don't want to be themselves because of all they have been through...I've heard it too. Praying for Abby and you.


Kate said...

Oh my heart breaks for Abby. I hope this gets easier soon.

What about a puppet show? You can make puppets out of paper lunch sacks.

A little scrapbook that she can work on.

make jewlery?

nikki said...

Wish I could give that girl a big hug!!! Wish I could tell her that some day all this pain will be a distant memory. Something she won't even have time to think about, as she is running from soccer, to dance class, to her best friends sleepover, to performing in her first school play. Praying for Abby everyday. Praying for relief from the side effects, and for her little spirit to stay strong!!!

Cori said...

I ran out of room on the McLinky, but wanted to finish about my idea for pink day. You could decorate Abby's chair at the table, drink pink lemonade, make her brothers wear pink, bake sugar cookies and decorate with pink icing, whatever fun, fluffy, pink girly things you can think of. Maybe wake her up to a bunch of pink balloons in her room?

Also, an easier idea might be to go around the table with everyone there and tell a story. one person starts the story and everyone does around telling different parts of the story, making it up as they go along. Can be pretty funny.

Breaks my heart for your sweet girl. I pray she is better soon!!

Kat said...

My heart is breaking. We are praying. Here are some crafty or fun ideas I can think of.
1. Pudding Art-It's messy, but easy. You just need pudding and a cookie sheet.
2. There is a book at teaching stores that is called something like, "Silly Sentence Starter". Abby could flip through it (it's sectioned, and you almost NEVER get the same story twice...they are mix and match stories). They are SO funny. All my kids love them. Things like, "Write a story about a chocolate roach that loved children." Gross, but so funny and you could just make up a story for her, but she'd be in control. Let me know an I can send one to you if you like!
3. You can get a tub of air dry clay, she can shape something one day and paint it another. They have colored clay as well (no painting!)

I will try to keep thinking, this is just off hand.

Again, praying!

Kris said...

I highly recomend the book "Games For Learning" by Peggy Kaye. All of the games are short (10 minutes) and require no props but maybe paper and pencil. Even if you don't do them exactly, you'll get plenty of ideas on things to do on the spur of the moment. All my suggested games are either in it or variations I made up from reading it. Peace and blessings to you all

Bobbie Bailey said...

Abby, sweet Abby. We understand why you don't want to be
Abby anymore. Jesus understands, too. So many people, people you know and don't know, want you to be "all better." You are loved little one.

Bobbie B.

Anonymous said...

We often fingerpaint - using fingerpainting paper and CHOCOLATE pudding!! It even dries nicely so you can hang up your masterpieces, AFTER you lick the extra 'paint' off of your fingers of course :).
Praying in Hong Kong for your sweet little Abby.
The Knight Family

Michelle said...

Hi Michelle,
I've been following your journey for a while now & rarely comment, but pray for & think of your family often. This post just broke my heart. I would love to send a care package for Ms. Abby of fun quiet things she can do. I've nannied for years & I do love putting together care packages! I already have some fun ideas & some friends who'd like to pitch in. Is there an address I can send it to?

Please let me know. It would be a blessing for ME to be able to put a smile on her face. :)

Thanks so much!
With Love,
-Michelle :)

wedogmomma said...

I so get it. And my heart hurts with you guys. God is good. All the time, but so much still makes us feel helpless.
My son 6 yr. old son is in a half body cast for a month after the removal of a benign tumor from his femur. I sewed velcro on sweatpants, and learned to use the bedpan, but NOTHING prepared me for the emotional and mental challenges he would face. Those made me cry more than anything.
Sending love and prayers to you troopers.

Heather & Rick said...

My heart is just breaking hearing those words... Abby.. we are praying for you all the way over here in Mozambique Africa! (thats really really far away and sorta close to where all the animals go to in the Madagascar movies). Praying that Jesus will wrap his arms around you and help you feel better- and help you feel like being Abby again, since a ton of people LOVE you!

Mom to 9 Blessings! said...

Oh Michelle - hugs!

I'm so sorry for Abby! God is preparing her for something so very special in life! The strength He has given her is beyond her years. And watching it being built is impossible I'm sure! Trusting God to comfort her and give her His strength to go on being beautiful, bright, bubbly, bouncy, Abby for many more years!

We love you - Jill

Gail said...

I don't have any ideas right now but my heart is breaking. I just cannot imagine what you are going through even though I read this blog. Johanna know who Abby is and we pray for her. Johanna loves to wear her "Pray for Abby" shirt and so do I. We will continue to pray for all of you. You are ALWAYS in our thoughts and prayers.
Gail and Johanna Faith

Michelle said...

We love you Abby! You have a surprise on the way from us! We hope it keeps you cozy while you are resting!
The Mann Family
(Michelle & Olivia and Olivia's daddy too!-his name is Phillip!)

Laurel Dailey said...

Pipe cleaner animals, and you can teach her to make shadow puppets~my pre-schoolers loved this, we did it before nap time at least once a week. Buy some cheap papier mache craft boxes (places like Garden Ridge carry them year round)and she can decorate them with stickers, markers, or stick on jewels. On days she feels a bit better break out the paints and let her go to town with those. Dollar stores carry all kinds of plastic suncatchers~ easy to paint (even on a bed tray)and pretty to look at once they have dried.

I am new here, but Abby's story has reallly touched me and I will pray for her recovery. God is so evident in her, and in the faith you all show. May she soon be EXACTLY what she wishes for~ a happy, HEALTHY and beautiful little girl. God Bless you all.
-The Dailey, Studler, and Fallis Families~ Frankfort, KY.

Renee said...

Thinking of and pray for Abby... always.

Courtney Kay said...

Its not much fun to be Abby right now... :(

Jesus be near, Lord hear our prayer...

Princess D said...

My heart breaks for Abby and for you as her parents to see her having such a struggle. Your post really touched me. I pray and send positive thoughts all the time that Abby will make a full recovery and her body will be healed. She deserves to have a normal childhood like all her friends and classmates. She has endured for so long and it's time for her to be HEALED!!!! In addition to the TAG Reading Pen I posted about I also recommend little beading/string jewelry projects, Fruit loop necklaces (yummy too), Playdough on a shower curtain or cookie tray, Pixos, Any crafts by the ALEX brand are generally great. My daughter made some of their puppets through their kit over the holidays and they have a cool tissue paper art set too.

Melissa, Multi-Tasking Mama said...

That is the saddest statement and if it breaks my heart I know it breaks your mama and daddy heart. Prayers for Abby!

Beth said...

I'm so sorry, guys. I remember Kyle in the hospital with those same, soulful tears running silently down his face as he fell asleep one night. Heart-wrenching memories you never forget - but here is hoping many more fun memories, today and many in the future, replace those soon.

Beth in NC said...

I am so sorry. I pray for Abby and my heart goes out to her and to you as her Mommy. (((hugs))) It looks like you got a lot of great ideas for activities.

Kelli said...

I'm so sorry that she is suffering like this. It's something that I'll never understand as long as I'm alive. I survive on the hope that someday when we're all celebrating eternal life with our Lord, it will all make sense.

LaVon Baker said...

I know it's old-fashioned, but I remember as a child when I was sick, nothing delighted me more than a coloring book and a big box of beautiful crayolas.