Wednesday, August 13, 2014
Mama Love
My boys' hugs are awesome. And their smiles when they walk through the door and see me = Mama LOVE. heart emoticon heart emoticon
Tuesday, August 12, 2014
Run For Ashlyn
Someone who doesn't even know us personally, but knows our story through a friendship with extended family, is running the Fort Worth marathon in Nov. and wants to use his miles to raise money to benefit Ashlyn heart emoticon
https://www.crowdrise.com/runforashlynHow awesome and thoughtful is that?!?!
A Rough Night...
If it weren't for the parking lot, it would have been a great, rainy, nighttime view of the bridge & the river from our room....
Our stay has been extended & we don't get paroled till sometime Wednesday. It's a nonstop party 'round here!!
Ashlyn hasn't eaten anything since Friday & has only had 1/2 cup of water since then. She's nauseous, tired & not very responsive, cooperative or agreeable to things that wld be good for her.
After a rough night, we've had a morning full of nurses', ACP & oncologist visits.....adjusting,discussin
The swelling in her 3 lymph nodes that was scarily big on her neck has almost completely disappeared.....her oncologist was impressed and surprised by how much the nodes have responded, so quickly. After Round 3, they will schedule more scans to see how everything else is responding. Keep praying....please
Monday, August 11, 2014
Saturday, August 9, 2014
When Things Don't Go The Way You Planned.....
They finally started chemo at 1:13 am. (Saturday)....my sleeping beauty got up for just a few minutes around 8:00 to brush her teeth, etc.....and was doing ok, got back into bed and had her mama bring her an extra blanket, tuck her in tight with a kiss, and fell back to sleep. And she sleeps on....
Looking at my calendar at things coming up.....Robert's 13th bday falls right in the middle of her 4th round of chemo. UGH. Gonna make the best of it just like Winnie the Pooh says.....but.....
DADGUMMIT. :'(
SN: I gained much wisdom and love for Winnie the Pooh from an 18 book set of storybooks that I would read to my kids when they were small enough to sit in my lap.....and even when they weren't. :) Each book began with "Words of Wisdom" from Winnie the Pooh, and then a story to follow. We had storytime every night before bed and they would come to me, with their little chubby selves and their cute little faces and excited little eyes.....and have not ONE, but two or three books each in their chubby little hands and often, I would read every single book they brought until I gave out. ;) Many times, there was one....or two or three... from our Winnie the Pooh set. I read them so much, I memorized them. They were the BEST books and I still quote them today!! ;) And I still have them....in storage right now, but I think I will hold onto them forever. I got rid of so many things over the course of two moves, but those books.....they're special. <3 Smiling now as I think of silly names I've given to things and recipes, and of how many quotes & phrases I use, that came from those books...
My three would fight like crazy over who got to sit in my lap. Usually one would get there first and greedily climb up and hold on tight so they didn't lose the most treasured seat in the house. ;) The other two would sit on each side of me, as close as they could get and they would often have to turn the pages for me because they were leaning in to me so closely that I couldn't move my arms. And I would read until my throat hurt, with that one in my lap snuggled up tight....his or her head just under my chin, or right beside my face, depending on which one it was, and I could rest my head against their sweet smelling hair while I read. Chubby little fingers pointing at their favorite pictures and swatting their siblings' hands out of the way. Little legs wiggling and kicking with excitement when we got to their favorite part. Mighty and indignant protests if I tried to skip sentences to shorten the story....they had them memorized, too...couldn't pull one over on them!! Smiles and laughter when I would try, just to pick on them and hear their reactions when I did. Ahhhhh.....sweet, sweet memories are even better than that good cup of coffee I posted about earlier, but they trigger tears in your eyes and an ache in your heart (and coffee doesn't do that).
Do you ever think about your most favorite & treasured times and wish you could just go back....just for a little while....and be in those moments again?? For time to stand still while you just....BE STILL in those moments and wish they would go in super slow motion so that you can soak up every drop of them with all of your senses and find a place within you to hold those moments tight and keep them safe so that you never, ever lose them....and can go back to them anytime you want or need to?? Or is it just me and I'm the only one that's weird like that?? Maybe that's why I hold on to those books and always will.....
It helps.
Make the best of it. Any way you can.
Looking at my calendar at things coming up.....Robert's 13th bday falls right in the middle of her 4th round of chemo. UGH. Gonna make the best of it just like Winnie the Pooh says.....but.....
DADGUMMIT. :'(
*********************************************
SN: I gained much wisdom and love for Winnie the Pooh from an 18 book set of storybooks that I would read to my kids when they were small enough to sit in my lap.....and even when they weren't. :) Each book began with "Words of Wisdom" from Winnie the Pooh, and then a story to follow. We had storytime every night before bed and they would come to me, with their little chubby selves and their cute little faces and excited little eyes.....and have not ONE, but two or three books each in their chubby little hands and often, I would read every single book they brought until I gave out. ;) Many times, there was one....or two or three... from our Winnie the Pooh set. I read them so much, I memorized them. They were the BEST books and I still quote them today!! ;) And I still have them....in storage right now, but I think I will hold onto them forever. I got rid of so many things over the course of two moves, but those books.....they're special. <3 Smiling now as I think of silly names I've given to things and recipes, and of how many quotes & phrases I use, that came from those books...
My three would fight like crazy over who got to sit in my lap. Usually one would get there first and greedily climb up and hold on tight so they didn't lose the most treasured seat in the house. ;) The other two would sit on each side of me, as close as they could get and they would often have to turn the pages for me because they were leaning in to me so closely that I couldn't move my arms. And I would read until my throat hurt, with that one in my lap snuggled up tight....his or her head just under my chin, or right beside my face, depending on which one it was, and I could rest my head against their sweet smelling hair while I read. Chubby little fingers pointing at their favorite pictures and swatting their siblings' hands out of the way. Little legs wiggling and kicking with excitement when we got to their favorite part. Mighty and indignant protests if I tried to skip sentences to shorten the story....they had them memorized, too...couldn't pull one over on them!! Smiles and laughter when I would try, just to pick on them and hear their reactions when I did. Ahhhhh.....sweet, sweet memories are even better than that good cup of coffee I posted about earlier, but they trigger tears in your eyes and an ache in your heart (and coffee doesn't do that).
Do you ever think about your most favorite & treasured times and wish you could just go back....just for a little while....and be in those moments again?? For time to stand still while you just....BE STILL in those moments and wish they would go in super slow motion so that you can soak up every drop of them with all of your senses and find a place within you to hold those moments tight and keep them safe so that you never, ever lose them....and can go back to them anytime you want or need to?? Or is it just me and I'm the only one that's weird like that?? Maybe that's why I hold on to those books and always will.....
"When things don't go the way you plan.....Make the best of it"! ~ Winnie the Pooh
Words of Wisdom from Winnie the Pooh. A very wise bear indeed. I like him. And I like that Tigger, too. I think if you combined the two, you'd have ME. ;)
Hospitals. Lots of quiet. Apparently good for writing. And processing, filtering, organizing and working my way through the many thoughts battling each other in my head because of the quiet.It helps.
Make the best of it. Any way you can.
A Coffee Experiment....
Live and learn. Mama came better prepared this time.
Dark roast instant coffee to add to weak & wimpy hospital coffee, my favorite creamer....and a real coffee cup.
Coffee. Should always be a good experience....or why bother???
After coffee conclusion: It was better, but not as good as it should be.....hmmmm. I'll keep workin' on it. ;)
Dark roast instant coffee to add to weak & wimpy hospital coffee, my favorite creamer....and a real coffee cup.
Coffee. Should always be a good experience....or why bother???
After coffee conclusion: It was better, but not as good as it should be.....hmmmm. I'll keep workin' on it. ;)
Friday, August 8, 2014
Checking In For Round 2....
After a morning of bloodwork & then taking my girl to
lunch & killing time waiting for a room, we are all checked in for a 4 day
stay at the Wolfson's Efficiency Inn & Suites (Wolfson's Children's Hospital)....
She’s been on IV fluids for several hours and we're waiting for Chemo Round 2 to begin as I type. I have
to do something to distract myself....this room is TOO QUIET…..so I
guess I’ll try to find words for the update so many have been asking for.
{added after the fact: this turned out
longer than I expected. Once I started,
I just kept going ;) …..everybody’s got their ways of processing & my way
is often in writing. Once I get started.
Read what ya want and leave the
rest for someone else J }
Today's lunch was one
of the few things that has tasted GOOD to her.
We have gone through a progression: Things have tasted metallic....or nothing tasted good and it all just came back up anyway, making her afraid to try to eat anything, to finally having success little by little with small amounts....grits was a hit for a few days. Then a few backsteps to throwing up everything again....and finally, day after day an appetite returning. But still , nothing tasted right. Nothing had flavor. Nothing tasted REALLY good. Lunch today....she'd been wanting seafood and I was determined to let her have it before she went back in.....it was GOOD & tasted just like it was supposed to. We stopped at a few places and it felt ALMOST normal, except that it
wasn't and I kept listening for the phone call that would tell me to bring her
to the hospital. She's just started to
feel better physically the past several days.
Not my normal Ashlyn and she tires easily, but much better than she was the
first week and a half after beginning her first round.....emotionally is
another matter altogether. Driving back
here was incredibly surreal....everything about this is surreal. So completely not wanting to bring her back
and make her do this again, and again, and again, and again, and again....and
yet having no choice. I wish God would just go ahead and let me do
this for her already….I think I’m already feeling so much of what she is
anyway. I felt sicker and sicker the
closer we got…..and sicker now still, just waiting for them to hook up the chemo. And watching her smile and be sweet to the
nurses, giggling at something one of them said….while I know what’s going on in
her heart. And it’s not smiles and
giggles. It’s FEAR. And anger.
And sadness. And every other
emotion you could possibly imagine she might be feeling. She’s good at that…..that smiling and being
sweet to them….and acting like she’s ok with most people when she’s not.
Ohmygoodness, the multitude of things that flood my mind….one
continuous, unending, relentless stream…..one thought after another, competing
and fighting for attention and their place at the front….The nice
guy who checked us into the hospital smiled as we walked in and immediately
said, “You go to FBC, don’t you”? “Yes,
we do”, I replied as I gave him our last name.
He looked at his list of admissions and said, “this is Ashlyn”???? He brought us up to our room, talking the
whole way. I met him on his way going back down and he asked me things
he didn’t want to ask in front of Ashlyn.
The last question he hesitated with & stammered around on, wondering
about her stage, until I said it was ok….he could ask. His initial facial expression when I told him….that
he quickly tried to cover up, made my
heart skip a beat and made it hard to breathe.
And I smiled and finished the conversation, thanked him for helping me
not get lost and for his prayers….and headed back to the garage to get more
things from the car. That garage. It was far too quiet. She was
fine. And so stinkin’ hot. It
was just supposed to be an infection. Easily cleared up. I walked to the farthest side where I had
parked and kept trying to BREATHE. Deep
breaths that just still didn’t seem to give me enough air. And I couldn’t get my heart to calm down…. Cancer. Stage 4B in my mind. She’s
never been sick. Nothing more than a
common cold or virus. It was just
supposed to be an infection. Easy
peasy. Get it cleared up and get on
with things. CANCER. Stage 4B.
That chart….it only goes to 4C. FEAR
of what if. That sick feeling that doesn’t
go away. And tears stinging my eyes as I
kept walking, trying to breathe and those stupid thoughts….the worst ones kept
fighting to be at the forefront. And I
walked….just keep putting one foot in
front of the other…. and tried to find my car…something to focus my gaze
on. I wondered where all those OTHER
thoughts that are usually there went and tried desperately to find them, to
push away the ones that were doing this to me. Lord
knows I’ve got enough other stuff going on that I should be able to find
something else to think about…..where’d all those thoughts go???
Funny how what is in reality only moments of time can seem to be
neverending and to drag on forever. And
finally, there it was. I fixed my gaze
on the car. Loaded myself down with
everything in it so that I wouldn’t have to make another trip and headed
back. And I thanked HIM for the weight
of those bags and blanket and pillows….the weight of carrying more than I should
and the pain of several bag handles digging into both my hands & shoulders so that I
thought they might fall off. For the
ache in my arms the longer I walked….it’s a long walk from the
garage, through the hospital and up to our room.
;) With each step taken with that
pain, the other pain lessened and the fear lost its grip on me. And I thanked HIM. I thanked HIM for never leaving me. Not ever.
And I got back to the room, took one more deep breath and
walked in, Ashlyn giggling at the sight of me loaded down and my silly reaction
to my hands screaming at me in pain and then relief when I dropped the bags on the
floor. And I smiled and said how awesome
it was that God put yet another person in our path….a guy from church to bring
us in today, someone else to tell us he was praying for us. Talked about how amazing it is that we can
see so clearly His hand, guiding us through and how he’s putting so many in our
paths, to encourage and love us through them.
And I started unpacking while we
giggled and joked about the horrible and disgusting hospital mac & cheese {and
everything else served up in here ;) }. I told her she just didn’t like it because she
was spoiled rotten with her mama’s cooking real food and GOOD food ;) , refusing to
relent to her persistent “just try it….just ONE bite” while getting out her own
blankets because the hospital ones aren’t good enough ;) , organizing all our
things while she watched me. Always
watching me. Always listening. Always
counting on me. Always trusting me.
Trusting me. My
stomach somersaulted briefly and that fear prickled. I have
to do the right things for her. I thought
about how MUCH I love her, how I would give my life for her…. to save her from
this….without a thought or the slightest hesitation.
And that as much as this hurts me and as much as I love her…..HE loves
us more.
?????
HOW is that even possible??? He has used my kids to teach me more about
HIM and His love for me than anything else in my life. As I love them, He loves me….only
better. And more. A love like that I can’t even begin to comprehend
or understand. But I can accept it…..and
beg Him every day that my kids will, too.
And I pushed those tears away that
threaten so often, silently thanking Him.
For giving them to me. For loving
me. And I asked Him to please….don’t let
me mess this Mom thing up.
They’re my Romans 8:28.
They’re my biggest and best GOOD in the midst of so much that isn’t.
I can't mess this up.
I feel like nearly every breath, every prayer, in my life and on various subjects, begins and end with two words. "Lord, please.....", with lots of other words thrown in the middle.
This is just a little glimpse into my day...our day.... as I write and I ramble, trying to make the thoughts be quiet while just outside the window, the sound of cars coming and going over the bridge makes me wonder where all those people are going to, living their lives and doing their thing while we're sitting here in this hospital room, wishing we could go and do....anything else but this. I wonder how people do THIS without the Lord. And for those who know the Lord, I wonder what goes in the middle of their "Lord, pleases". What goes into the middle of your "Lord pleases"??
I feel like nearly every breath, every prayer, in my life and on various subjects, begins and end with two words. "Lord, please.....", with lots of other words thrown in the middle.
This is just a little glimpse into my day...our day.... as I write and I ramble, trying to make the thoughts be quiet while just outside the window, the sound of cars coming and going over the bridge makes me wonder where all those people are going to, living their lives and doing their thing while we're sitting here in this hospital room, wishing we could go and do....anything else but this. I wonder how people do THIS without the Lord. And for those who know the Lord, I wonder what goes in the middle of their "Lord, pleases". What goes into the middle of your "Lord pleases"??
If you have a home and someone who loves you and who's there for you....and children who are healthy and happy....please make sure you throw some thank you's in there, too. Because I'm sitting here waiting for a chemo that I hate to be pumped into my daughter, knowing that when she wakes up in the morning, she's not going to feel good. And that in the days ahead, she'll feel even worse. And that her smile that I got a glimpse of today might not make an appearance tomorrow. And I hate it. I hate chemo and what it does to her. But I hate the alternative more.
Lord, please. Let this work. Please.
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