Tuesday, May 28, 2013

the hair

(If you follow us on FB, you've seen a lot of this already, just not as much detail.)

I think I mentioned on here that Emma had a "last wish" with her hair?  If not, Emma had a last wish with her hair.  And since she is going to lose it all (as well as potentially having her last wishes in general), we didn't hesitate when she told us she wanted to color her hair pink.  

Overtime, that turned into wanting rainbow color hair.

Rainbow colored hair.  Who knows how to do that?  

I emailed the girlie that does my hair, and I asked her about it.  We did the "No matter how much it costs, we're doing this."  

She responded with something along the lines of, "I have no idea how much it'll cost, and I'll need to look into how to do it, but don't worry about paying me for my time.  I'd love to do this for Emma."  She then contacted her friend, who also does hair, and explained the situation.  She was more than happy to donate her time as well.  Since there was a lot that needed to be done, they figured they'd get it done twice as fast with both of them.  And that was true!

Neither of them had experience in something like this, so it was quite the amusing experiment for them (for me!).

So, here's enough detail that it could actually be a tutorial...

They started by bleaching her hair, each doing half her head (did the same when it came time to color).

Don't let Emma's expression fool you.  She was incredibly excited!

Hair with bleach on, giving it some time to do it's thing.  The nice thing is, we really didn't have to care about whether the process damaged her hair or not.  She won't hair have her hair for too much longer anyway...as it'll come out from the chemo.  (Her hair is totally fine after all this, just FYI.)

I had just rinsed, shampooed, and conditioner her hair, and this is what we saw...haha.

We moved into the garage (vs the backyard) because it started raining.  They sectioned her hair, and started with the first, front section by drying it first...  They blow dried each section individually as they got to it.  It actually made it easier to keep stray hairs away by keeping parts of it wet.

Then they started with the color.  They chose the color order based on what Emma told them she wanted.  She wanted pink in the front, then yellow, then purple (?), then green (teal), then blue.  

When they got to the yellow, they noticed that the pink started bleeding over onto it.  Since the yellow is such a light color, they decided to foil it to keep it safe from the darker colors.  It was mighty entertaining watching them try to foil it.  It seems super slippery and really difficult to get the foil to stay.

So, then Emma had a crown of foil on her head, mostly because it looks cool.  As you can see, when they added the additional colors, they just twisted the hair to keep it to itself, and it worked really well.

Here Violet is getting her color put on.  No bleaching needed since she's blonde.

Foil to keep her other hair safe.

Here's a better close up (they hadn't gotten the blue on yet):

Meanwhile, Rhys was in the house, pouring herself a glass of orange juice.  When she missed and poured it onto the floor, she got a little paper towel to try to clean it up.  Cute!  (and sticky)

Then it was time to rinse her hair.  So, being the professional salon that our kitchen is, we had her lay on the counter and put her head in the sink (towel under her neck to catch stray color).  We didn't use shampoo this time.  Just rinsed super well and then used a conditioner.

And then they were done!  It looked better than we imagined it would.  I can't remember how long it took.  Maybe four hours?  I was surprised to suddenly feel overwhelmed by the emotions of it all.

It's time likes this where the charity of others means more than you can express.  Sure, it's just a hair coloring...but for Emma, it was more than that.  And with all the crappy stuff she's going to have to go through, knowing she got to do this means the world to us.  Thank you, Connie and Hanah!!

Meanwhile, Rhys was making herself a sandwich aka drinking the honey...

They didn't forget how important it was to Violet too (even I wasn't as on my "game" as usual with including Violet with my focus on her hair, but they were!).  They gave her a lot of attention with how exciting her hair was to them too.  They were both hilarious, incredibly sweet, giving ladies.

Violet wanted the purple color, which is why we had purple.  It's her current favorite color (funny, considering her name).

Here's a little thing I made for FB that shows different angles and more of her hair.  The lovely hair ladies had taken these photos.

They did a pretty fantastic job, didn't they?!!  It was funny watching them try to figure it out as they went.  They put a lot of thought into it, and clearly it paid off.  They did a fantastic job.  Oh, and in case you're wondering, they used ION, I think it was...

We have some leftover that we can recolor so that her hair doesn't end up super weird looking.  Also, we are getting some dry shampoo to help extend between washes and will wash in cool water to help it last longer.

Emma LOVES it.  We all love it.  In order to all match, some of the rest of us decided to streak our hair.  You saw Violet.  They also did pink in Rhys' hair.  It matches her coloring well.  I think as Violet's lightens, it'll match her coloring even better too.  So, here's some more pics:

Emma wanted her hair in braids.  It looked super cute.

If you were to ask Violet about this picture, she'd ask you "Do they notice the barbie?  What do they think?"  (I think Tyler is either shape shifting or super-power-speed-walking in the background)

Rhys would not hold still.  Here's one of her...

I tried to get a few of our hair, but it didn't work.  The room was too dark, pic too grainy.  But it was kind of sweet.  That's TS on my shoulder.  Yes, I know his hair is long.  The boy doesn't like it when it gets cut, and I've yet to care enough to make him get more cut off (I do insist on trimming once it reaches a certain length).  He likes it longer.  And, we've watched enough Korean Dramas to not care if his hair resembles that...hehe.

Here you can see it better.  Emma wasn't supposed to be in the photo (she wasn't not allowed, she just walked in while we were doing it) and looked super cute back there.  I have pink in the front, purple on the opposite side (you can barely see it), and then blue in the back.  It's really not super noticeable in my hair.  At least it doesn't seem like it to me.  Maybe it is to others.

Then another lady from our ward dropped by hair thingies for the girls.  They are so unique and individual and cute.  This is an awful picture (when it comes to the lighting), but you can see how cute it is.

Violet wore the matching purple one.  It goes really well with her hair.  Not that you can see it in this dark photo!

The flower looked cute when it was originally put in her hair.  Then it ended up....like....this.  

So, there's that!  Our little Emma has her beautiful hair.  She loves it.  We all love it.  We all enjoy having coordinating hair.

Here are a few, quick, random pic taken from when we walked around the church (we don't go inside with how germy it is in there...the "go to church, even if you're sick with the plague" point of view is real, making it one of the least safe places for Emma).  It was super windy and bright and none of the pics are technically good, but I love them!  We have about ten variations of this (including one where Ella finally made her escape behind us...).

(my hair thingy matched better than it appears here)

Speaking of my hair thingy, it's one of the ones the sweet lady from church dropped off for the girls.  hehe.  Love this one with Violet and her crazy hair (kind of clashes with her dress!).

Violet is starting to notice all the attention that Emma is getting.  Before this, we were able to keep pretty good control over it and make sure we didn't give her more attention than them (since we love them all just as much as we love Emma!).  But now that she is nearing transplant, she gets more attention from others, outside people, which is totally understandable.  We love that people are making her feel special because it's helping her have the focus she needs to do this.  

As a result, though, the other kids, especially Violet, are beginning to feel excluded.  She's been in tears over it.  Makes me heart hurt for her.  I posted about it on FB, mentioning how Violet was feeling, and the awesome response of people made me cry.  (yes, lots of things are making me cry lately!)  Now I don't worry too much.  I know that while I'm gone and can't be here to make sure they know how special they are, others are stepping in and will help to make sure that happens - to help them know they are just as important and aren't at all forgotten.  

A sweet lady responded to my FB post (she's an FA grandma), and this part explains it exactly how I feel:

"People tend to forget the siblings fight just as hard as the "sick one".  The same battle, the same fight...at the same time a different battle and a different fight.  It's hard no matter which way."

It's so true.  

We've bought each of the kids, staying home, bears that I can record my voice on.  I'll leave them a special recording and will also give it a big, magic hug that will always be there.  So, if they need a hug from me, they can give it a hug and know my hug is really still hugging them back.  I'll also be sending them packages and things so that they know I'm thinking of them.  Of course, FaceTiming them every day too!

I cannot believe we leave so soon!  Barely over a week left...

I look forward to being on our way home instead of on our way out.

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 them...living 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 home...it'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 by...as 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 happy...so 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!