My New Life

(Before this post begins, I would ask that you all remember my brother in law Michael as he recovers from what appears to have been a major heart attack.  Please keep him in your prayers along with Erik's sister Cheri and their 3 children.  My wonderful in-laws, who have lived with us for the last 8 months, left rather unexpectedly on Friday to make a 13 hour trip to go take care of Cheri's family.  We would have been lost without the help and support of Erik's parents and will forever be indebted to them.  They will be greatly missed, but we know that they have another obligation to fulfill.  I can't imagine my precious nieces and nephew without their grandparents there to help them through this tough situation. )
Happy Red Cup to You! 
The Thanksgiving and Christmas seasons have officially been ushered in, thanks to the Starbucks red cup.  The mere sight of the cup makes me warm inside.  Its as if a rush of emotions fills my soul and I start to long for holiday dinners, Christmas trees and flannel pajamas. 

Here is my first red cup.  Thanks to the St. Jude Starbucks, I did some life organization yesterday during Lucy's school with the help of a Gingerbread Latte.  And you know what, that red cup started 2 different conversations with 2 strangers.  All inspired by the mystique of this red cup.  It was wonderful.

Oh, and Christmas music.  I am crazy about Christmas music.  Yes, I have already started listening to it and I'm not embarrassed at all.  In fact, this is my current favorite...

Why yes, this is Mr. Buble.  And yes, he is bringing me a gift this Christmas.  Listening to him sing "All I Want for Christmas" put me right in the holiday spirit.  But I have to admit that the same spirit I am yearning for is the same spirit that has my mind spinning and me crying out for help.  Ever the sentimental type, I have never been one to hold back at Christmas.  Last year I put up 7 trees, decorated my mantle, stairwell and the outside of the house as well.  I adorn light fixtures with garland, mirrors with lights and the tops of my tv cabinets with snow villages.  (and last year I had a 3 month old to boot!)

But today, I can honestly say that the thought of decorating doesn't make me happy.  In fact, it seems to be just one more burden that my heavy arms can't carry right now.  We will put up our family tree and the girls' trees, but that's it this year.  Its not that I don't want to do the other things, but I know I can't this year.  My priorities lie somewhere much more important.  Besides, who wants to spend an entire holiday season telling a 14-month old "NO" all day long.  That just doesn't seem much fun to me at all!

I have to stop now and say that in no way is this post meant to be a pity party for myself or a veiled cry for help.  It is merely a week's worth of thoughts poured onto a journal that I will cherish for the rest of my life.  When this is all over I want to remember the good days and the bad.
This past week was a whirlwind of events and emotion.  We were at St. Jude on Monday and Thursday.  Wednesday we began our OT and PT sessions here in town.  Friday was another PT day along with Lucy's first day of tutoring by one of our favorite adopted grandmothers.  "Gram" has agreed to tutor Lucy 3 days a week and we are so very grateful.  (in case you are wondering, Gram belongs to BFFs Hyatt and Gracen).  I know anyone reading this is probably saying "Seriously?  A tutor for Kindergarten?"   I have no doubt that this mother with a Master's degree could handle Lucy's curriculum.  I have found out, however, that a mother with a demanding 13 month old can not give Lucy the attention she needs while trying to keep Jack happy as well. 
That, and my Christmas revelations, are just some of the many "things" I have figured out this week.  I have learned that a 13 month old can not go to a PT or OT session, I have learned that my anxiety will rear its ugly head when I least need it to and I have learned that I have to ask for help.  LOTS of help.  I have also learned that I am not near as accepting of Lucy's cancer and what its done to her body as I should be.  I have learned that it, in fact, does NOT get easier as time goes by.  Being home  has been the most difficult, stressful and depressive part of this whole journey. 
I have learned that no matter how hard I try I can not be a full-time mom to my three kids, medical assistant to Lucy, chauffeur to all things extra-curricular, grocery shopper and chef.  I can not help Ella with her homework, while playing Legos in the floor with Jack while trying to do leg stretches with Lucy to help her overcome her foot drop.  I can not engage my girls in creative activities like cooking or holiday baking when Jack needs me to play outside with him.  I can not do a load of laundry without feeling overwhelming guilt about Lucy sitting for yet another 30 minutes on the couch while I try to keep our house together but should really be doing an OT exercise with her or helping her with her phonics reading. 
And for those of you who home school and do this sort of thing everyday, kudos to you.  But this post isn't about you supermoms.  It's about this mom who was removed from her life 8 months ago and thrown into a horrific, nightmare of a new life.  And then, when I had finally learned how to live in that life, I was thrown back into my old life which resembles nothing of what my old life was.  I went from having 2 self-sufficient children and a 4 month old to having a 5 year old who can't walk, a 14 month old who is testing his boundaries each and every day and a super sensitive 8 year old who needs just as much attention as the other two (but often doesn't get it.)  Throw in an extreme type-A personality, guilt and anxiety on my part and you've got a party waiting to happen!
Needless to say, I'm struggling.  I sat down one day this week and wrote out what a typical day needed to look like for me.  I divided the day into morning, afternoon and evening.  There was medicine to be assembled and taken, line dressing changes, PT, OT, school and home PT exercises that have to be done 3 times a day.  I also have to get out with Lucy 2-3 times a day and force her to walk with her new walker.  Then there is school for Ella, after school activities, volunteer opportunities at school so that my child knows I am engaged in her life, church on Wednesday and Sundays and homework.  For Jack its just about finding quality time to sit in the floor and play or read books.  In there somewhere I need to take care of groceries, pharmacy runs, twice weekly trips to St. Jude, dinner preparation, laundry and baths/showers for kids.
And the worst part is, anytime I am doing anything that does not involve Lucy I am riddled with guilt that I should be doing more for her.  Either that or overcome with fear that I might be missing some quality time with her that I might one day regret.  My mind is totally numb at times. 
My mom has agreed to help me in the mornings and I have hired a college student to come 3 days a week in the afternoons to help out.  Mom will be able to help with Jack while I focus on Lucy in the mornings and Hogan will help with Lucy in the afternoons while I focus on Jack and Ella.  It's not perfect, but just knowing that I have this plan in place has helped me breathe just a little easier.  I pray that Lucy will quickly become more mobile and will be able to go back to school at the first of the year. 
On November 4th, there was the most perfect entry in my Jesus Calling book.  It said "Walk peacefully with Me through this day.  You are wondering how you will cope with all that is expected of you.  You must traverse this day like any other: one step at a time.  Instead of mentally rehearsing how you will do this or that, keep your mind on My Presence and on taking the next step.  The more demanding your day, the more help you can expect from Me...........I will give strength to you and bless you with Peace."

Wow!  How likely was it that Sarah Young, the author, somehow knew me so well that she wrote this entry just for me?  Not likely, I know.  But I do know that God knew I would one day need to read it.  I did read it and I wept.  I wept tears of exhaustion and fatigue.  I wept tears of anger and bitterness.  I wept tears begging for mercy and grace.  Now, I am re-reading it today with a open mind and heart.  Trying to prepare myself for a lot of depending-on-God to get me through this week.  Even with the extra help, it is going to be a hard one.  Each day will present a new challenge and it is my task to learn how to handle it with dignity and grace.  Some days I will succeed, many days I will fail.  Either way, I will walk this road learning to lean on God and learning to ask for help from friends and family. 

Thank you all for your continued to prayers for Lucy, me and our family.  Lucy continues to grow a tiny bit stronger each day and is working really hard at eating.  Some days are better than others, but she is at least holding her weight right now.  She still tires very easily and requires a lot of rest.  She works hard at OT and PT, but isn't always cooperative at home when I try to make her exercise or walk.  I am having to walk a fine line between pushing her too hard and not pushing her enough.  Its a tricky balance, but we are getting better at it every day.  We hope that in 2 weeks her counts will stabilize so that Dr. W can pull her central line.  Please pray that her body will pick up the production of white blood cells and that her ANC will rise.  Last week her hemoglobin was 8 and her ANC was 300/400.  The doctors are hesitant to give her any assistance in hopes that her body will start to do the work itself.  Erik has Lucy at the hospital today, so we will have a better idea of how she is doing after lunch. 

Here is Lucy with her new walker.  I almost didn't post this due to how miserable she looks, but this is the look I get every time I make her do anything.  It kills me to admit that my once aggressive, over achiever has become complacent and perfectly content to sit on the couch.  I end up being the bad guy many times a day when I make her exercise or walk.  Oh, she gets so mad at me.  I know I have to do it, but knowing it doesn't make it any easier. 

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