Saturday, May 18, 2013

time flies

I probably shouldn't be writing when I've only had 3-4 hours of interrupted sleep (love teething, don't you?) because you never know what I might write when I'm not totally coherent!

I can't believe it's already May 18th.  Didn't this month start two days ago?  That means that in two more days, we'll be leaving for Cincinnati.  (Not really, we're leaving June 6.  It'll just seem like only two more days!).

I've noticed that I do pretty okay with everything until one of the following happens:
(1)  I think about it.
(2)  I don't think about it.
(3)  I see my children.
(4) Another day goes by.

I'm going to miss these little people so much.  My heart is already breaking.

While Violet was cooking (stirring orange juice), she reached over to pet her cat, named Rhys:

I'm going to miss seeing those babies of mine!

Knowing that in less than three weeks, I'll be leaving somewhere else...not seeing them.  Knowing that this could be the last time we are together as a family like this.  Knowing that Emma might not come back's scary...and there are lots of tears some days.

I believe it's the right choice.  I believe we are doing the right thing.  But I know other families made the exact same choices as we have, for the exact same reasons, and they didn't get to bring their babies back home alive.

But, at the same time, I feel like it's time.  Emma needs this chance.  I feel like we can do this...that she needs another chance to live like a normal kid.  I feel energized for it, and I feel a peace about it...somewhere in there!  :)  (I feel it more when I'm not so sleep deprived.)

I'm starting to feel more anxious as the days go the reality of everything becomes more real.  It's almost like we're being told to come and line Emma up in front of a firing squad with ten other kids.  They'll only shoot one of them.  What are the odds that it'll be Emma?

Just 1 out of 10.

When it's your child standing in front of the "firing squad", 1 out of 10 seems like too high of a risk.  I don't know anyone who would want to put their child in that line.

I used to wonder how it feels to know you're heading to transplant.  What types of things do parents think and feel?  Well, for me, you start physically feeling different.  You start feeling nervous for no obvious reason.  You just notice you're feeling butterflies in your stomach and you feel a little scared all of a sudden.  You notice your hands are shaking more.  Then it goes away and comes back another day.

I remember feeling this way when it looked like Emma might be developing leukemia and when she had her open heart surgery.  Otherwise, it's not something I'm accustomed to feeling.  I'm not sure it's something I've ever felt other than when I felt like my daughter's life was truly in danger.

But I'm starting to feel that again.  It's a very mild version of what I would be feeling if Emma really was standing in front of a firing squad, knowing she could be the one they choose.  I feel like my heart and mind are almost always fully aware of our situation, and sometimes it sends out the "save your baby!" hormone.

I remember when my friend's little girl was dying from FA, of a brain tumor, she said that she felt like she was on a runaway train and couldn't get off.

It does feel that way.  I don't believe I feel it even close to the strength of what my friend was feeling (as their situation was going quickly and there were no options).  But this year, I feel like we've really settled onto that train and are trying to figure out how to get off.

I've discovered that transplant brings a big conflict of emotions.  Using the train analogy again, for our situation, it more accurately feels like we're on a really fast train, driving a scary route...not knowing if the train is out of control or if it might actually be driving her to safety...and doing it much too fast for comfort.  But where we are right now, it's hard to know where that train is headed.  There's hope that it's driving her to safety...and there's fear that it's out of control and we won't be able to get off in time.

I feel like this entry has been all doom and gloom!  I don't mean it to be that way!  I definitely feel many other feelings than just more "negative" ones.  I've also been very weird.  Happy and sad all at the same time.

I just know for me, and maybe other FAmilies are different, I find it helpful when they share their feelings, including the more difficult feelings.  I don't know why.  It just helps, and it makes me want to share just in case it helps anyone else to know that it's normal to feel these feelings. I think it's healthy to feel them and let them out and go.  I try to never judge whether what I'm feeling is "right" or "wrong".  I don't think feelings can be classified that way.  They just are.  It's okay to feel them.

I'm not someone who is prone to depression.  Typically I can find in happiness if there's only a touch of good in a situation.  I'm hoping and praying that I'll be able to continue that way while being away from my husband and other children.  Right now it feels so impossible thinking of being away from them.

Well, we have 18 more days and then we go.  Just over two weeks.  <insert butterflies>

Today we had photos taken by Jessica from Tiny Sparrows.  They are a charity foundation that takes photos of sick kids and their families.  Pretty amazing that someone would take the time to do that, isn't it? So, mark that off the list.  We for sure have a nice family photo or two to treasure for forever.  I'll post those when I get them.

Emma has blood work this week.  She also has her hair dying appointment.  We let her choose what to do with her hair, since it's all going to be falling out, and she chose to get it colored.  I'll share more details when I have some photos to share.

Also, we've refinanced our home to save money.  Can you believe the rates are low enough that refinancing actually is worth it?!!  We've only had our home a year.  Anyway, we'll be completing that very soon.

Everything is falling into place.  :)  Soon I'm going to have to start packing.  Then it'll feel even more real!


  1. Thank you for sharing all this. I have been thinking about you. I can't imagine what your going through and how your feeling. How long will you be away from home? I'm and idiot and don't understand the whole transplant process. I wish we loved closer and I could offer some help. But please know you are in our thoughts and prayers. Thanks for the update!

  2. You all are heavily on my mind & always in my prayers.

  3. Thank you for sharing this journey. I'm a stranger to you, but I want to tell you that I am holding your family in my thoughts and prayers. I see from this blog and the FB page that so many people are reaching out to you: what a wonderful net of love and support! May God continue to bless and keep you all, and may His peace surround you during this especially difficult time.