Friday, August 22, 2014

Sweetness

Walking past me, she stops and says...."I love you. You're awesome". Without being prompted. ðŸ˜³ðŸ˜³ Pause. And then, "I know God is doing something because I've been feeling good this week. That has to be God....and all the people praying for me" ~~ Ashlyn

Just squeeze my heart a little harder, why don't cha???

‪#‎PrayForAshlyn‬ ‪#‎GodIsGoodAllTheTime‬

Thursday, August 21, 2014

When It Rains, The Party Goes On..

‪#‎tbt‬, because Ashlyn Pennington was just laughing over these pics & the memories yesterday....
Who says when it POURS the entire time during her brother's bday park party, that the party has to stop??
I'm a BAD mom. I let my kids play for hours in the rain (don't call DCF....there was no lightening ). AND I let them make forts in the woods. AND they carried big sticks. AND had boys vs girls planning/strategy meetings under the bridge.....And it remains in their memories as one of their most favorite parties ever.
Love my Sassafras girl!!! And a friendship that began just after birth & is still going strong!!


Tuesday, August 19, 2014

Every Little Victory Counts!!

Look who's attending classes & having lunch w/ friends at co-op today!! 


Coffee Crisis...

When someone else beats you to making the coffee.....and you're extremely picky over your morning coffee....
Smile. Say thank you. And tell yourself that it'll be ok.......really....it will.
wink emoticon
 — feeling unsure.

Monday, August 18, 2014

I Need a Magic Potion....

Whoa. BABY.
I have found a new LOVE....now hoping this li'l combo is magic.....


Take Your Best Guess

Never fails. 1st two words this mom hears from her 2 boys when she walks in the door after being gone for a few hours are :: "__'__ <insert space> __ __ __ __ __ __" ...

Take your best guess!!

A Celebrity I'm Not...

Getting bloodwork/check-up..... The girl at the check-in desk just did a double take and said, "do you know who you resemble"?!?!...."Hunter Tylo"!!! I think she was trying to be nice & I responded with, "I **WISH** I looked like Hunter Tylo"!! wink emoticon Then she says, "yeah, but she's had a lot of work done recently...."
Gotta admit I'm not one to keep up with celebrities, so just googled Hunter.
Ummmm.....on 2nd thought, I think I'll just stick with looking like me.


Saturday, August 16, 2014

Losing Fingers....Or At Least the Feeling in Them...

Ashlyn has 4 diff nausea meds that we are rotating, trying to find the magical combination.....one of which (that seems to work pretty well) comes in a non-crushable capsule type thing that she can't swallow and that I can't crush and administer through her g-tube. In the hospital, they extracted the liquid with a hypodermic needle....for the 2nd day in a row, I have put a hypodermic needle almost all the way through my finger trying to get the liquid out...it is NOT as easy as it looked. Ouch. cry emoticon Who needs that finger anyway.....and where's that firefighter I mentioned yesterday?? I could use some medical attention myself right now! wink emoticon
Her throat and tongue hurt and we may be starting to see the appearance of the mouth sores.....
And pray for my nursing skills. That stupid capsule is not going to get the best of me....I may lose a finger trying, but I won't stop trying to conquer it....wink emoticon

Everybody Needs a Musical Sometimes....



Amazon Prime + failure to sleep = I'm addicted
Long nights get shorter with song & dance ;)


wink emoticon

Friday, August 15, 2014

Heart Rate Slowly Returning To Normal....

A 14.75 yr old boy, who sounds like and is as big as a man, and who thinks it's funny to sneak up on his unsuspecting mom while she's drying her hair & scare the living daylights out of her, needs to relearn what funny is. I think I may need a paramedic....or a firefighter might do. Isn't that who usually comes if you have to dial 911?? I like big trucks & I cannot lie.... wink emoticon

My Friends Remind Me....

To be honest.....feeling A LOT more things all at once than blessed {I'll spare you the rest wink emoticon }....but for right now, just want to say THANK YOU. For the prayers, encouragement, so many acts of service and kindness, generosity, attempts to add a smile to our days here & there, patience and understanding with unreturned msgs, etc., etc, etc, .....THANK YOU to each and every person & family that's helping us get through so much. Even in the moments when I look around and feel completely worn & empty & like there's nothing left to lose &.....{this is where I spare you the rest}..... there's still the feeling of "my cup runneth over". It doesn't make any sense, but it is what it is.
Only God can do that. Through all of you.


Thursday, August 14, 2014

The New Normal...






Home health care delivery this morning & the pharmacy/clinic I'm now running ...... Waiting for a home health care nurse to get here to help set up equipment, etc. while Ashlyn lies in bed waiting for nausea meds to kick in (just in case) before she gets up & while my boys are on their way to Hilliard for hopefully a fun day (& we wish we were going, too....our old normal). We've always been a team, the 4 of us,  and I rarely took those times for granted.  Regretting the few that I did take for granted now.  I want them back.  Beyond thankful for the friends who are keeping us going...making meals, giving rides, so many things.....but wanting so badly to just do it myself. To be the mom I've always been. To be there with them, being silly and making them laugh, keeping them in line (or trying to) when needed, teaching them, cooking for them....doing pretty much everything for them.  I want to be THAT mama...

There are certain words and phrases that I don't react well to....one of them being our "new normal".  To go from the girl who is never sick & has always been healthy as a horse and to think of this as being our "normal" is hard to accept.  I need to think if it as temporary....

In those boxes are a feeding pump, stand & supplies, and formula (Ensure) for supplementing Ashlyn's diet.  She has lost weight fast since her diagnosis.....she's at a healthy weight for her age & height, but the rate at which she's losing is not good for her strength and energy or overall health.  We're trying to stop the weight loss so that she will feel better and so that her body will have everything it needs to fight as hard as it can!!  New medicines to stimulate appetite, new medicines combined with old to help control nausea and vomitting...SO many medicines!!  If she feels like eating, she can eat whatever she wants to eat.  If she can't eat, we supplement with the g-tube feedings....one can of Ensure for every meal skipped.  Please pray for control over the nausea/vomiting....and the rest of her side effects, more energy and feeling better in general.  A consistent input of nutrients will help with that! Yay for doctors, nurses and dieticians being back-up for mama.....telling her everything I've ALREADY told her!!!  Funny how she doesn't argue with them.... ;)

Yawn.  It's only the middle of the day and Mama needs a nap.  This new temporary normal is exhausting....


Wednesday, August 13, 2014

My Boys....


Oh, how I'm missed these boys!!!  It felt like they'd never let us out if the hospital so I could see them!!!!





My boys' hugs are awesome. And their smiles when they walk through the door and see me = Mama LOOOOVVVEEEE.  <3

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

"Faithful One" ~Selah

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/runforashlyn

How 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,discussing and making plans for switching some meds, etc., meeting the children's oncology psychologist (to which Ashlyn did NOT respond well to AT ALL  )....dietician to come tomorrow to discuss beginning g-tube supplementing if Ashlyn doesn't try to start eating  .....

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
 

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..... 

"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. ;)

Friday, August 8, 2014

"I Have To Believe" - Rita Springer


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"??  
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