Monday, June 15, 2015

On Hold

That's where I live right now ... just on hold, in limbo, waiting on a phone call, an email.

It was almost a week ago that we found out that La Petite Belle's donor agreed to go ahead with the donation. And, now during the next couple of weeks, everyone works on coordinating dates ... donor gets physical workup to make sure she's healthy to donate, she looks at her schedule to figure out what is a good date for her, she may have to travel to a donation site, and she would need to get shots to boost her stem cell count before the procedure. Texas Children's Hospital also has to have a bed in there BMT unit so that also plays a part. Meanwhile, La Petite Belle continues to see her doctor, to check counts, get transfusions, takes her meds, currently takes shots to boost her white blood count (she needs to stay healthy during this waiting period so that the transplant does not get delayed), and tries to be a normal 14-year-old. 

Every day I check my email frequently ... like every 30 minutes to see if I have some sort of answer as far as when we need to temporarily relocate.

The thought of being about 3 1/2 hours away from home isn't a very fun thought, especially realizing after the first couple of weeks, I'll be doing the majority of caregiving on my own. Of course, missing Beau and K Belle is going to be another thing I have to deal with. When I think back just a few months, I remember telling Beau that the rest of this year I was going to spend every minute I had with K Belle before she left for college. Turns out our time won't be as I planned.

I constantly recall that Scripture in my mind ... We can make our plans, but the Lord determines our steps. -Proverbs 16:9

My plans were made with good intentions. My plans were for the best for my oldest daughter and for our family. And, while I don't like to say "God had other plans" because I don't think God "plans" tragedy and horrible things for us. I just don't. But, He knows they are coming and He prepares us for them.

  He never "plans" bad things for us; His "plans" for us are ALWAYS good.

So, my plans just got thrown out the window in one instant and new plans were made. New plans I never thought I would be making ... like moving for a few months or being jobless or flushing PICC lines.

Speaking of PICC lines ... flushing those things are like second nature to me now. I was so scared at first, thinking I could hurt my child in some way because of my clumsy syringe handling. Today ... a piece of cake!

Now, there's a second challenge, and I'd be totally happy to NEVER have to do this ... give La Petite Belle a shot. Right now, she is getting Neupogen (only costs about $20,000 each) shots every other day. This is probably her worst fear realized. She hates needles and the medicine burns. She has already informed me that she is NOT comfortable with me giving them to her ... well, join the club, sister! I'm not comfortable giving them. The nurse gave me instructions on how to do it before we left the hospital. I feel like I'm becoming a nurse via CliffsNotes. The only part I remember now is "it's kinda like throwing a dart." Uh ... huh? I was NEVER good at darts.

So, we reverted back to having Nana come over and give the every-other-day shot until one of us thinks we can do it. That needle is long ... and even the pulling of the medicine from the vial seems more complicated. Maybe I need to practice on someone? Any takers for dart practice?

For now, we are continuing to take it day-by-day until there is a date and a plan from the hospital.

On a good note, our house is under contract. We've sold almost all or our furniture and are gathering everything in our house together to sell at a massive garage sale in a couple of weeks. I hate doing garage sales. Hate.

But, it must be done. 

I'm also packing up boxes of what we are keeping, which is only our clothes and any keepsake items we're taking with us. 

I had a few emotional moments when I started taking all of our pictures off of the wall. Seeing the progression of ages in my girls was brutal!

Believe it or now, it feels really good to purge. It's like starting over, starting fresh!

Will I miss the house? Yes. Only because this is the house where our girls have spent most of their time growing up. We've been here almost 10 years so it holds a lot of memories. We have put a lot of work into this house too and created what we think is a homey, warm atmosphere.

But, "home" for us will be multiple places for the rest of the year. And, I honestly don't care where it is as long as I can have all four of us together. 

Perspective changes so much during times like these. It really does. You see what everyone is made of, not just you and your family, but your friends ... those you thought were close may become distant and not there like you expected them to be. There will be those who were close before and become even closer now. And, my favorite surprise ... those you never expected anything from become your heroes and literally the hands and feet of Jesus.

I continue to stand in awe and grateful for all God has done, particularly in the way I've seen Him use people to fulfill His Word.

He remains good. He remains able.

If you would like to support La Petite Belle's journey to healing financially, you can find more information here -