Wednesday, January 18, 2012

A New Way of Parenting

This is what a typical day looks like for Shelby now.
 With an occasional (2x/week) game of bingo on the hospital tv station (yes, she won again!) to look forward to.
 And super-uber cool visitors like Kayla who will play Spongebob games on Xbox with you because your mom really sucks at video games.
 And the all-too-brief, but oh-so-wonderful times of being a family of 5 again.

 But, mostly, just this.  Sitting, watching TV, playing her DS, watching youtube videos on how to train the dog she so longs for...this is Shelby's day.
I don't know if Kohl's House was the best move for her.  She desats more frequently than in the hospital because I have to move her around more.  The meals don't (and can't) come to her here.  She has to go down to the kitchen.  Just the simple movement from wherever she's sitting/laying is enough to drop her oxygen levels into the low 80's/high 70's.  It is exhausting for me here.  While she does sit and watch tons of TV, I do try to take her out for fresh air, but that's a whole production getting her O2 and oximeter and her all wrapped up and ready for the cold...I'm just not convinced this is the place for her to be right now.  Where is the "right" place, I'm not sure about that, either.  We were supposed to see her doctor today, but they were really booked in clinic today so they offered for us to come in the morning.  I will bring up these concerns.  Do they want her desatting that much?  What toll is that taking on her body?  How soon would they schedule a living donor transplant if a match is found?

Those are the physical concerns about Shelby.  The things that have me questioning this move have to do with her spirit, her well-being.  Shelby is so outgoing and thrives on interaction from many people.  She is not getting that here.  I see her becoming more withdrawn, moody.  I feel guilty for not providing her more stimulation, but I can only do so much.  I question how can I keep her going, keep up her "Shelby-ness," that sometimes overwhelming magnetic personality?  How can I support that?  The answer that pops to mind first (because I know her going back to school is impossible right now) is to have her readmitted.  There, magicians, clowns, volunteers, artists, nurses all came in the room and gave her enough interaction to make this "new" temporary way of life bearable.  But not only bearable, but in a way Shelby could continue to thrive, to keep up that fighter spirit.  Remember how I shared before that she said to someone "I'm not here because I'm sick.  I'm just waiting for my new liver."  THAT spirit.  But it has wavered this week.  How do I continue to keep her going forward?

I also think a lot of how this whole situation makes it so hard for me to do what I've always wanted to do my entire life - be a Mom.  I knew there would be an extended separation from Riley and Avery, but couldn't exactly imagine what it would be like.  Now, here I am, living it.  Trying to be a part of their lives, still, but also knowing that its o.k. for Avery to call me Grammie when she sees me right now.  That Riley might run to my Mom for something before me.  Its o.k.  Its how we're getting through it.  The selfish, silly part of me takes over sometimes and says "will they remember me?"  I know, of course they will.  My arms long for their daily hugs, though.  Kissing their foreheads. I try to find a *new* way to parent my children.  The one that needs oh-so-much of me right now and the ones that need me, but can't have me right now.  This is tricky and tough stuff, folks.  But, as I've said before, it is our reality, so with that, I will continue to make the best possible lemonade ever.


Jen Wessel said...

Gosh Jen, I can't imagine what you're going through! It must be pure torture for you to watch as it seems like everything is changing for the worse when you and your entire family and friends have went above and beyond to keep it as "normal" as possible. My heart breaks for you as a mom! Please know that I am praying for you, Shelby, Riley, Avery, Scott and your parents! I know you will ALL pull through this together and when it is all over you will all be stronger for it! I pray that God strengthens you, brings you joy and increases His grace toward you! Most of all I pray for the best possible liver for Shelby and soon. Please give your family my love.

Britiney said...

Jen, It's the best lemonade i've ever heard about girl!! Anyone would question themself in a situation as hard as yours, but i believe that you and Scott are the BEST parents your girls could ask for, infact any girl could ask for!!! I have questioned myself alot sence all the pain my daughter has had to go through and still has to go through but we do the best we can with the lemons we are provided... And i think that all we can do is try to add a little sweetness to those sour lemons, and you are doing a wonderful job of that.. You can tell just by looking at the pictures, the smiles and happy faces say it all.. i know there is alot inside that we don't see but that will come to and be resolved with a couple magical moments and some time... Keep your chin up girl and never hesitate to call or text me if you need!!! Sending our love and prayers, Britiney and Bella

Beth Binger-Dunaway said...


Stay strong and always remember God is right there with you.

Karen Phelan said...

I am so not good at putting thoughts into words but know this: you are an awesome Mom and your children know it, your parents know it, your friends and family know it and best of all, God knows it because that is how he made you!