Motherhood....

"Through the blur, I wondered if I was alone or if other parents felt the same way I did - that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that - a parent's heart bared, beating forever outside its chest."

Debra Ginsberg

 

Yeah.  

THAT. 

Takin' A Ride In a Li'l Red Wagon...

Been trying for a week to take Ashlyn for a ride in a wagon, but she wld not consent.....she strangely doesn't always find my sense of humor & adventure as amusing as I do!!!

So I'm taking her tokens of love for a ride!!! We have covered all of garage level 3....I didn't park there!!! Let's see what level 2 has to offer us....

Poor kid...has ME takin' care of her...smh

Trip 2....the monkey doesn't get as much of an adventure, but he still made several people smile along the way....

One more should do it & then we'll keep waiting for discharge papers...

#PrayForAshlyn

Psalm 40:2

Pray for Keegan...

Just got back from making Ashlyn do laps { ;)  just walking) around the 4th floor of this place & noticed the name "Keegan" on a room on the other side. That's who I dressed like Super Woman for in a post from a few weeks ago.....he also has a very rare cancer.  He was diagnosed in May & has Burkitt Lymphoma Leukemia. Its normally one or the other, but he has both cancers. Please pray for this sweet little guy.

 

 

 

So amazing the way God puts people in our paths with a purpose that we can't see at the time.  I think we'll be knocking on little Keegan's door in the months to come...

"Still My God" ~ Avalon

"We Are The Reason" ~ Avalon

Haven't heard this song in forever!!! Still love it.....don't mind me, just having a li'l worship experience in the hospital room this morning.....& trying to pull a certain someone into it with me ;)

Moms. We can be so annoying. :P

‪#‎PrayForAshlyn‬

Music Speaks....

Hard day for my sunshine....in more ways than just physical. She thinks I'm playing some of my favorites on youtube for ME. The songs that bring peace to my heart & soothe my soul in the most painful of times, the words and truths of God set to music..... music often does things that words spoken in other ways can't. Mamas of teens, and mamas of teens who are faced with something that is so terrifying, have to have a few tricks up their sleeves sometimes.

This is where she finds out what kind of faith she has. This is where it gets real....

‪#‎PrayForAshlyn‬

Let a Little More Sunshine In....

Ashlyn was not up for visitors again today :( , but that didn't stop a few friends from dropping some things off! :)

 

Do you remember my post about Ashlyn, her friend Laura, and their "BFF" that they made while volunteering at VBS last week??  This is a pic of the three of them (above).  Love all the pics she brought....and love me some Laura ♥

Her room is looking more & more cheerful!! And she likes the decorative effect, so I was sure to remind her to always remember :: Mama Knows Best!!! :P

AND....yes, I did hang that HUGE banner all by myself ~~ just call me ElastaGirl !! ;)

#PrayForAshlyn

Blessed ♥

Have my laptop in my lap....care to guess who typed that while sitting beside me, on my right???

And there's someone else that I've been missing like crazy on my left.

And sleeping beauty lies in front of me.....

One Blessed Mama Right Here ♥

The Guest Book...

During a visit the other day, someone suggested having people sign in as they come. The more I've thought abt it, the more I've thought what a great idea it was.....for Ashlyn to have a kind of "Guest Book", not just for this hospital stay but for the duration of her fight. A record of all those who love her & come to pay her a visit & spend time with her, to be able to look back on the days ...and see just one more way that she's not fighting alone. A visual reminder that God is with her in so many ways, using the Body of Christ to love, support & give her strength with each hug, smile, laugh, gift & card given, milkshake brought, movie shared.....& in the sometimes needed quiet moments, when someone cared enough just to sit and share the silence with her.

I just started it & I'm trying to fill in the days before today....and hoping I don't miss recording anyone!! The days....& my mind....get a little blurry sometimes!! Sigh.

Just look at all the sweet friends who would have come today. :( Hoping that she will start feeling better tomorrow & be up for more visits soon. ♥

#PrayForAshlyn 

Let a Little Sunshine In....

She told me not to decorate her room, but........really. She should know her mama better than that!!! ;)

 It's a start.....sure wish we cld have the flowers that ppl have brought in here!!

#PrayForAshlyn

A Sweet Reunion...

Ashlyn is feeling pretty yucky this morning & is asking for no surprise visitors today.

Last night we had a surprise reunion with these 3 precious girls & their mamas!! I can't remember the last time we were all together at once. What a blessing it was to have them... all here & the fact that they happened to come at the same time, unplanned, on the night she began chemo & right before she wld start feeling bad, is just another example of God's constant presence, unfailing love, & of His perfect timing. We let them stay late & cherished every sweet moment of catching up. 

My heart aches this morning as I look at this picture & long for the days of this foursome being together often, and the foursome of me & their mamas being together right along with them!! Homeschool field trips & events, sleepovers, ice skating, beach days, pool days, Thanksgiving Feasts & Hilliard fun days.....so many precious memories associated with these beautiful faces!! Love each one of them so very much!!

Job 2:11 "Now when Job’s three friends heard of all this evil that had come upon him, they came each from his own place...........They made an appointment together to come to show him sympathy and comfort him."

The appt of coming together the way we did last night was was not made by any of us, but it was made by the One who knows our hearts and our every need. Thankful.

#PrayForAshlyn #GodIsGoodAllTheTime

Results and Stage Change....

Ashlyn has begun her first round of chemo. Each round will be a 4 day, inpatient process. We will be in the hospital through Tuesday, when this first round will be complete.

Bone scan showed 2 spots in her knees lit up & we had X-rays done today to determine why. It could be cancer....or not.

After all the tests/scan results....her stage has been upgraded to 4B.

#PrayForAshlyn

Bone Scan....

Ashlyn's has a bone scan is at 11 & should take abt 1 1/2 hrs. The tracer they injected for the scan has to leave her system before they can begin chemo, which is still scheduled for today. Still not sure when she can leave...depends on the type of chemo she is getting. Waiting to find out.

I've been given some info that has caused me to ask for a cpl of extra tests (including the blood work I pos...ted abt yesterday) and also for her Dr. to consult a team at UF/Shands abt her. I can't tell you how intimidating it is to know she is at the best hospital & has one of the very best Drs in his field w/ 25 yrs of experience, & ask for tests & consults that interfere with his plans. He bristled at my questions & requests & this mama had to push a little and not back down....to a Dr, she's a patient...but to me, she's my world!!! I laid on the couch in her room this morning with tears & fears abt making a mistake or wrong choice in her care .....Ashlyn has no say in anything that's happening to her & is completely depending on me to make the right decisions. I prayed that if this team had info that wld make a difference for her, that he will lead her Dr. to listen & respond. And then, an hr later I found out abt the bone scan which I feel is a direct result of that consult. It is not normal protocol & was not part of the plan.

Praying that nothing shows up, but thankful that if it does we will know sooner than later. Thankful for a sweet friend's help so that I knew what to ask for and for filling in the UF/Shands team for me so that they already knew all about her so that we can leave no stone unturned for my girl. ♥

""I will instruct thee and teach thee in the way which thou shalt go: I will guide thee with mine eye." Psalm 32:8

"Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths." Proverbs 3:5-6

‪#‎PrayForAshlyn‬

More tests....

Just had more blood drawn from Ashlyn for a test I've asked for that I'm praying to hear negative results on.

My heart is praying one way, but my mind has to brace myself & plan for what looks like may be the opposite. Not thankful for the suffering of others, but SOOO thankful for how God uses them & their experiences to help others in their time of need & makes connections at just the right time.

Praying for supernatural wisdom & discernment in the days ahead. My baby's counting on me....and we're both trusting in His leading...

Asking for y'all to do this for me ::
"For this reason we also, since the day we heard it, do not cease to pray for you, and to ask that you may be filled with the knowledge of His will in all wisdom and spiritual understanding" Colossians 1:9.

 

 ‪#‎PrayForAshlyn‬

More scans....

Waiting for Ashlyn to be taken down for more scans. Got results of her PET scan this morning...some spots on her chest & also a node in her groin lit up, which means more cancerous activity.

I think Ashlyn's surgeon & oncologist are finally on the same page. No chemo today or until her body has healed enough to begin. Maybe tmrw....not sure. She will stay in the hospital until after she has the chemo.

Psalms 55:22 Cast thy burden upon the LORD, and He shall sustain thee: He shall never suffer the righteous to be moved.

 

 ‪#‎PrayForAshlyn‬

Operation Day

Time to show everyone what she's made of!!

Ashlyn's verse for her fight::

Deuteronomy 31:6 New International Version (NIV)

"Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; He will never leave you nor forsake you.”

♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥

AT 1:36 pm, Ashlyn was out of surgery....waiting in her room for her & spoke to the recovery room nurse...Ashlyn is doing well. She is drinking juice & talking....the nurse said she is being so sweet, is the best patient they've had all day & they want to keep her ;)

That's MY girl. ♥


By 2:53 pm, she was resting & listening to music, wrapped up in the warmth of a blanket that was part of an awesome care pkg given to her on Sunday!!

and....apparently, I don't look like MOM material....for the entire day, every staff member that we haven't yet met has come into the room & looked to every other person BUT ME trying to figure out who Ashlyn's mom is.

It's me!! It's me!! It's MMEEEE!!! ;)

I'm her mama.  <3

Sweet 16 Photo Shoot

A few quick & fuzzy phone photos from Saturday because I can't wait to see the Pinterest worthy ones!!!  SOOO thankful to the ladies that made this happen for my girl!!  I scrambled like crazy making this happen for her.....a Sweet 16 photo shoot and once more chance to ride before her surgery and chemo. ♥

Ashlyn's oncologist has said no riding & no horses for her once chemo begins. There's an issue ...with barns & the hay & her soon-to-be compromised immune system from the chemo. :'(   Each family is assigned a social worker to help navigate everything that we have to deal with, and when ours saw mine & Ashlyn's faces when we heard "no horses", she knew that it was a BIG deal. She tried suggesting several ways to make it work for her....some way to let her have "horse therapy". We did not get approval from the Dr, but I'm still hoping we can find a way, esp when knowing I've got sweet friends who would go the extra mile to make it happen for her ♥

And, btw...we woke up to rain on our rooftops & I tried to encourage Ashlyn that her day wld not be ruined while I pleaded to The Lord to let it be so. We were able to get tons of pics & she was able to ride. They had just gotten back from a long ride, taken the horses back to the barn, & within minutes, the whole sky came down in a torrential downpour. Not a moment too soon....perfect timing. :)

#PrayForAshlyn #GodIsGoodAllTheTime

 

Another VBS Story....

Playing the waiting game while Ashlyn waits for her PET scan....& while I do, I have another VBS story to tell....this one is Jacob's. I can't share his sister's w/out sharing his. ;)

Before this latest crisis rocked our world like never before, we had already gone thru & were/are still going thru some TOUGH STUFF in other areas of life......and there was a boy last week that seemed to seek Jacob out, to want to hang out with h...im. During rec one day, they sat & the boy shared some things that he was dealing with in his family. Jacob then shared some of what we have been through, giving the boy someone he felt could understand and relate. Before the convo was over, this boy prayed to receive Christ. ♥

I have claimed many verses for me personally, but Romans 8:28 has been one that I have given my kids most often as I've tried to point out each and every example of God's goodness & provision, tried to tell them to hold on tight to Jesus because He will use them in ways He couldn't have before if they will let Him & give it all to Him ~~ the good, the bad & the ugly. None of these stories that I post are intended so that I can hear things like "you're a good mom" (I fail at that repeatedly & continually!!!!) or how sweet and great my kids are (although I wld agree with that one!!!). It's really not about us at all....it's about how GOOD He is, abt how much it blessed my heart to hear that they are starting to see these things for themselves....to see Romans 8:28 come alive for them & to see them feel that they CAN make a difference & ARE being used by Him. It's about nothing but the GOODNESS of God, abt seeing His hand at work.....making beauty from ashes & giving purpose in the midst of the pain. ♥

‪#‎GodIsGoodAllTheTime‬

Perfect Timing....

Hey. I have a story to tell! I bet you're shocked. ;)

Ashlyn made a friend while volunteering last week at VBS......the mechanical bull operator. She, along with another BFF...sweet Laura,  has affectionately named & called him "Best Friend", brought him snacks & goofed off with him on the days she was there. She has invited him to church several times throughout the week. On the days she had to miss due to her dr's appts, he found... out about Ashlyn's diagnosis and her upcoming surgery. Turns out, his sister just had the same surgery last week for a port and g-tube that Ashlyn is having. Before she left last night, his "maybe" of coming to church turned into he "will" come to church....and that he wanted to keep up with how she is doing.

A coincidence that their paths would coincide?? That she just so happens to strike up this silly/fun friendship at this particular time in her life, on this particular week, that would bring her so much laughter....and meet someone who's sister is going through the same thing at the same time, showing her that she's not the only one?? And that she could, in return, have an impact on him & get him to agree to come to church?? I think not.

God WILL use for good, what Satan means for destruction.....and has perfect timing in the orchestration of who and what He brings into our lives when. He's cool like that.

Romans 8:28

We have a hearing test at Nemours and PET scan at Shands today, and Ashlyn's surgery is tomorrow. They will put in her port and g-tube and might begin her first round of chemo while we're in the hospital, depending on all the test and scan results. She will spend at least one night there......and she asked me on the way home last night, "I'll get to go to church Wednesday night, right?" and got so mad when the answer was "no". "But I'll be out of the hospital in time...."

Love that girl. So much. ♥

‪#‎PrayForAshlyn

Ít's the Little Things...

I stopped to get my boys a cpl of things at Target after church today....and I was wanting a pair of jeans to wear to the hospital this week cuz I get cold!! Abt 90% of my clothes are in storage & after debating for way too long abt driving a long way to get a cpl pairs out, I decided I'd end up spending as much or more $ on gas as I wld just buying a pair. Feeling guilty for spending $ on myself, I finally found a pair that fit & we checked out. My jeans that I was having a hard time buying rang up as $7.48!!

I can do that....while leaving my guilt over it on the rack! ;)

 

I saw what ya did there, Lord.  Thank you. The little things do matter. 

 

Give thanks for all the littles....and before you know it, they add up to a lot.

"It’s amazing, the more we recognize even the smallest things as gifts from God, the more we start to realize how present He is in our lives.” - Lysa TerKeurst

 

 

 

Strength for the Weakness

Watching my girl who turns 16 in 20 days sleep on a couch nearby, drinking more coffee....and praying that she'll feel good on her 16th bday, a day she was planning to celebrate surrounded by her amazing friends at camp. If I could have hand-picked her friends, I would have picked the exact same ones she did. ♥ I don't even know what to plan for her :'( ....I was hoping when morning came, maybe ...it wouldn't be true. I don't want it to be..... I want to go to bed, pull the covers over my head and pretend it isn't. Come on coffee....do your thing so I can get movin' on another day.

"Then said Jesus unto his disciples, If any man will come after me, let him deny himself, and take up his cross, and follow me." Matthew 16:24

Can I PLEASE carry hers, too?? :'( :'( :'(

"But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." 2 Corinthians 12:19-11

Don't feel you have to comment on this one. Just showing I'm not as strong as everyone thinks I am.

HE is.

 

The Follow-Up

Update on Ashlyn: We were hit with some pretty hard stuff today and are in for a rough road ahead. I'm having a little trouble seeing the keyboard as I type this.... :'( :'( Going to be specific because I want very specific prayers for my Ashy Mash.....maybe if we're very specific, it'll change something....or give her more strength to get through it... Good news: 80% survival rate The rest... of the news: She is in at least Stage 2B (speculative at this point).....but we still have to see if it has spread anywhere else. Once scans and tests are completed, we will get a confirmation of her stage. We had more bloodwork done today & she will be having many scans and tests done over the next several days: MRI of brain/neck, CT chest scan, PET scan, bone scan, hearing test, panorex(sp?) xray of teeth. The treatment will be very aggressive and intense. She will be receiving a permanent IV and we have an apptmt tmrw for a consult with the physician who will be putting in a chemo port....surgery for that will most likely be Monday. She will be receiving high radiation & chemo treatments that will result in painful mouth sores that will leave her unable to eat, so she will have to have a g-tube. She will also lose her hair. She's going to be a very sick girl as we try to fight this. She will be in pain and will be on several meds to try to counteract the physical reactions of the treatment. The high frequency of the radiation may cause some hearing loss, which might be temporary....or might be permanent. The radiation may also cause a loss of fertility and hypothyroidism. As far as we know now, she will have 3 rounds of chemo, followed by 2 rounds of radiation plus chemo combined and will begin next week. She is scared. And sad. Sad that she can't go to camp. Sad that she can't continue riding lessons.....her happiest place of all... And sad that she can't play soccer. And mad. And all kinds of things.......and I can't blame her. So much suddenly taken now, and threatening to be taken from her future. "The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly." John 10:10 Please pray for healing and restored health for her. Strength for all of us. And that she....and her brothers, who are also struggling right now....will be able to see & learn & grow through this.....to see for themselves exactly who it is that is responsible for the stealing, killing and destroying....& that in the midst of turmoil, pain and suffering....dreams crushed and stolen, that they would learn to turn to the Giver of Life with it all....who gives so graciously, lovingly and abundantly every step of the way. ‪#‎PrayForAshlyn

The Diagnosis

I've been working my way through my own feelings, then through having to tell each family member and thought that it would be at least a few more days before I was able to share an update with the rest of our world....but she wants me to go ahead and post her diagnosis....one that is still hard to say and I wish would disappear as easily as it does when I hit backspace or delete.

Ashlyn has a form of cancer called Nasopharyngeal Carcinoma. It is very rare, esp. in the US....mostly prevalent in Asian countries. Statistically, only 7 out of 1 million in North America develop this type of cancer. Out of that 7 in a million, it is very rare for children to get it. Also very rare for females to get it. She is in the less than 7 in 1 million people to have this type of cancer in North America. :'( The cancer starts in the pharynx and is very hard to detect....symptoms are identical to common cold or virus symptoms. It spreads to the lymph nodes in the neck, which is when ppl find out they have it. When I took Ashlyn in to first get her checked out, she had one lump in her neck. She now has 3. We have an apptmt. at Nemours on Wed...the next step is to do "lots more scans and tests" to determine if it has spread to any other areas.

Most of you, if you know Ashlyn casually, know her as my sweet, quiet girl. And she is. But, as with all of us, her personality is not one dimensional and there is much more to her than meets the eye. ;) She is also my feisty, sassy, STRONG-WILLED one. People often make that "strong-willed" personality trait into a negative one.....and she has never liked the label. But the Bible tells us that we are all "fearfully and wonderfully made"....and I have taught her, and my other two children that Truth. That when He "knit them together in their mother's womb" and made them so fearfully and wonderfully....that included each and every personality trait and characteristic that makes them who they are. I believe that He made everything for good.....and that the traits in us....in them....in HER, that we struggle with the most are the ones that Satan wants to use to hinder us. Because those traits, when given wholeheartedly to the Lord and when they are submitted completely & repeatedly to Him, are the ones that He will use the most to make a difference in our own lives and in the lives of others. I reminded Ashlyn of that tonight, as I looked into those blue eyes that I love so much and broke her heart with news I didn't want to deliver, in the process breaking mine, too. I reminded her that He made her naturally strong physically....and that her strong will was not given to her by accident. He knew the days ahead of her when He created her.....He knew and equipped her with everything she needs to be victorious in this battle, and every battle that comes her way in the future. I reminded her of that and many other things in my efforts to calm her fears, dry her tears and help soften the blow she didn't see coming. I also told her that she already had people praying for her.....from here in Jax and all over the country, who didn't even know her diagnosis yet. That she has so many that love and care about her and to let them love on her and encourage her, because that is one way that the Lord will love her & give her strength to get through this. She wants those prayers, needs that love & encouragement, and with tears and fear in those sweet blue eyes, she told me to go ahead and tell everyone.

I don't want to hit "post". I don't want to put it out there and have it be true. I want to take it out of her body and put it into mine instead. But I can't. And it is. And I have to. Because she needs the prayers........we all do.

‪#‎PrayForAshlyn

Throw Back Thursday....and then some....

....a few of my all time favorites of my baby girl from our dance days!! I've said for years that each of my children hold 1/3 of my heart....but each one actually holds every bit of my WHOLE heart at the same time. ❤

"Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows."– James 1:17

She's not perfect, as none of us are.....but she is, always has been & always will be one of three most GOOD & PERFECT GIFTS I've ever been given.

So thankful that He chose me to be her mama. 

 

 

She gets to ride her favorite horse today....."he's the most fun horse I've ever ridden!!!". :)

Wish I cld give her a horse of her very own!! And the sun, moon & stars while I'm at it ;)



"Our Hope Endures" ~ Natalie Grant

♫ You would think only so much can go wrong
Calamity only strikes once
And you assume that this one has suffered her share
Life will be kinder from here...
Oh, but sometimes the sun stays hidden for years
Sometimes the sky rains night after night
When will it clear?
But our hope endures the worst of conditions
It's more than our optimism
Let the earth quake, our hope is unchanged
Emanuel, God is with us
El Shaddai, all sufficient
We never walk alone
And this is our hope ♫

"Broken Praise" ~Todd Smith

After more doctor appts, more tests, & a scheduled and cancelled surgery...I received a diagnosis for Ashlyn this afternoon. 

Another case of no words. But there's always a song for that....