I can do this

Got teary this morning.

I was glad we were heading home, but apprehensive at the same time.  I felt that way the first time we took her home from the hospital.  I remember thinking.....

"I want to stay here.  These folks know how to care of her and I'm afraid I'll do something wrong and hurt her."  

She seemed so fragile then.  

She seems so fragile now.  

But, God made me her mother.  He will equip me for the job.

Trusting in Him.

Believing His promises.

I can do all things through Him who strengthens me.

Philippians 4:13

Flying this Coop!

Looks like she's going home today!  Awaiting discharge orders.

She's walking.
She's talking.
She's eating.
She's smiling.
She's making a list of all she's gonna do once she's out of here.

Lydia's To-do List
1. Pier 1
2. Pottery Barn
3. Go out to eat
4. manicure
5. pedicure
6. midnight party
7. Starbucks
8. mall
9. ice cream
10. T.J. Maxx
11. Barnes and Nobles
12. paint pottery
13. museum








Here's a glimpse of her temporary nest at UNC. . .

Willie sketched some of her favorite things...

Hatteras beach vacation and Zoe

Target and flowers

Cards

and 

artwork

from 

friends!

♡ Sweet feet ♡

bed buddies

her view

her well loved blanket

sleepy girl

snapshot taken before surgery

Aunt Shelly's Scentsy had her room smelling
 nice and homey

Taking a stroll with Daddy to pass the time while waiting to go to the OR

wagon ride
to pass the time

Memory game
to pass the time

she got the first match!

*her stack on the left
*daddy's stack on the right
☺

He knows he doesn't stand a chance

abdominal bandage

Dr. Gold came to visit her and handed her a cup of yellow paint and said, 

"here, Lydia, 

put your mom's makeup on..."

cleaning off the paint

These Byrds are ready to fly!

They who wait for the LORD 

shall renew their strength; 

they shall mount up with wings like eagles; they shall run and not be weary; 

they shall walk and not faint.

Isaiah  40:31

Counting Blessings in the Storm

Yesterday Lydia had the shunt placement in OR without any complications.  She has been resting for the most part.  Occasionally she experiences pain, but thankfully the pain meds keep her discomfort at bay.  Not sure when we will go home as she hasn't eaten much (other than a half of a saltine cracker and a smidgen of chocolate!).  Hasn't gotten out of bed yet either.  Trusting God to carry her through this stage of healing from surgery.  Trusting Him to equip us in the caregiving role as we transition from hospital care to home care in the days ahead.

God has been so faithful to us in the past and that reassures me that He is not going to leave us now as hard days are ahead.  It builds my strength to think back on how He smothered us with His presence during past hard days , giving us PEACE. That Phillipians 4:7 peace......  the kind that is not at all able to be understood. That peace doesn't make since when you should be shattered, broken, and desperate..... but the opposite of all those.  And also JOY ... joy in the midst of sorrow.  Joy in knowing He holds us in the palm of His hand, we are secure in His love, and He has a perfect plan.  He has also given joyful moments.  Glimpses of His goodness sprinkled along this path.


    Ones like these shared by friends on facebook...

"Let's just take off to Marbles Museum, let Luke paint my face green, bust out a window, and ride down the road as if we look normal! Words simply just escape me. You are in the middle of the earthquake of your life and you are comforting everyone at a time when we should be doing that to you. Your blogs have blessed more people than you could have ever imagined. When Lydia first got sick Payton could not talk plain and would pray for Wydia, you know the durl with the bracelet. Thank you for teaching our family how to pray without ceasing. We are still praying for a miracle. Love you guys!"
written by Penny Warren


"I remember the time we spent at beach. Lydia and Caitlyn loved doing their art projects. We all enjoyed Your cooking. Caitlyn said yesterday that she still has a necklace Lydia made her and how special it was to her. Praying daily for your sweet family. Love to you all!" 
written by Cindy Cherry

"I remember when Lydia was in my class with Ms Smirne at Memorial. I looked forward to seeing her those three days a week! Such a beautiful, fun spirit in her! She was our "pink girl", I dont think there were many days when she wasn't head to toe in pink!! :) I would love sitting down and doing art with her, she would write her name and luke and sam's names a lot of the time on her papers. I remember one day we were playing some music and Lydia and I were doing "ballet". Thank you for sharing your girl with us that year!!! Thank you for sharing your journey and your faith with us through this trial. Sending love and many prayers to all of you. ♥"

written by Patti Jordan

"More memories to help you smile as u endure this trial! I could write a book.... I must say I will never forget the first time we officially met u, Willie & Lydia after recognizing u from church in Target on that snowy day, everyone had on their snow attire, including Willie w/ his crocodile dundee hat & I remember Adam and I saying that is one neat family after talking with you! Lydia had a glow about her that drew us to your family.... that would lead to many get togethers trying to have adult conversations in the middle of chaos of children running around having their good time. (I wont even go there when we'd go OUT in restaurants together when kids were little, haha!) What stands out in my mind how Lydia would always take time out to converse w/ us and flash that beautiful smile & eyes.Sweet sweet times that I cherish! Thanking God for all He's done & doing with your faith & family so that HE MAY BE GLORIFIED! Love & Prayers!" 
written by Karen Congleton


"Praying for you! Remembering when you came over when Sydney was born. Mike was sneaking Lydia chocolate:) she wasn't sure about Mike, but sure she wanted that chocolate! Love you all!"
written by Natalee Perkins

"My 2 sweetest memories was when we came to Clayton to keep the kids while u and Willie went on a date. I got some of the sweetest pix of them together and of Willie playing with Dawson because he was all Dawson wanted? Soooo cute. 2nd BEST memory was at the New Year party when Lydia would not let me out her down. I sooooo enjoyed holding her and spoiling her most of the time and going upstairs with the kids and letting her play with my hair. We love u all! "
written by Jenifer Carnes


" I was thinking this morning about the time I was at your house, this was years ago, not sure why I was there and I had to run some errands and Lydia wanted to go with me, so she loaded up in the car with me and we just made an afternoon/evening of some girl time. Which I needed since I live with a bunch of boys. I remember she and just laughing and having a good time. I so love that little girl!!" 
written by Celeste Harris


"I remember VERY well the day we took the kids to lunch at Pizza Inn towards the end of the preschool year, before any of this "storm" began. We loaded up all of the kids and didn't think twice about the chaos that we would bring upon the restaurant. The kids had a blast, and I am pretty sure they were loud and messy, just as they should have been. My girls absolutely adored being in Lydia's class and becoming friends with her. Even now, I catch them playing in their room and overhear them talking to their doll they have affectionately named "Lydia." I also remember that great day we spent at your house in Clayton and our adventures at the Marbles Museum. I remember peeking out at the girls in the back yard as they were running around holding hands and telling secrets and giggling!! Those were good times my friend! And as you already know, nothing says FUN like busted out windows and police officers!!! ♥"
written by Karen Briley


"The circle of prayer in the Cracker Barrel parking lot..."
written by Amanda Booker


"When you all were right across the street and it had snowed, the girls were outside playing, sledding down your backyard, having a great time. They made snow angles and enjoyed the cold weather. It always makes me smile to think of Olivia and Lydia playing because they are so laid back together, always agreeable and ging along with the others ideas. I love the trick or treating picture with everyone on the stoop."
written by Janet Wilson


"Remember being at your house doing some art with Lydia. Also remember getting "beat up" by "Batman" with a punching ball! LOL! Great fun being with your kids! Gotta love em! Praying, night and day! :D"
written by Teri Pritchard


"I will always remember Lydia bringing Luke to class and then picking him up. She is such a good big sister. I also remember all her accessories she wore each day. She is such a sweet girl. always lighting up the room with her smile! We are praying for you and will continue to pray!"
written by Amanda Jackson


"buzz lightyear boxing gloves and the sweet neighbor girls Lydia made friends with in Marietta"
written by Julie Schafer


"Remembering trying to sneak a huge stuffed Tigger onto your bench outside your front door without being seen by the kids!!!!!"
written by Paula Clark


"I love and still remember the way we shared books and verses that helped us grow in our walk with our Father. You have blessed me so much and continue to do so. Lydia is a special girl who shines like a star and loves with all her heart! Jasmine still has the necklaces, bracelets and many other love gifts her dear friend made for her. Her special pottery flower that brighten up the room just like Lydia does."
written by Jessie Martinez


"Remembering the night we had dinner together. Did you know Lydia gave me a bracelet that night? I told her it was too pretty for me to keep, but she insisted. When we went to leave, she grabbed my arm. "I wanted to make sure you didn't take it off" she said. I wore it every day but worried it would break during my work with patients. It hangs from my rear view mirror now. I see it during my 2 hours on the road every day. It is beyond her understanding how her life continues to affect countless others."
written by Alesha Kelley


 "I remember sweet little Lydia from the nursery days at Unity. She was this tiny little beautiful toddler that loved to sit in your lap! So sweet! She has grown into this beautiful young girl so full of life and a testimony to us all! Thank you for teaching us all so much!"
written by Pam Krol


"I keep seeing Lydia's face and remembering when I came to your house in Clayton and your precious girl was so happy to make her bracelet and then so selflessly gave it to Lacey instead of keeping it for herself. I will never forget that. Your daughter, you, warrior mama, have taught me so much."
written by Ashley Letchworth


"I remember being at The Playroom for Ben's birthday, and hiding at the top of the slide with Lydia, who reassured me that our parents would forget and leave us, allowing us to have a sleepover there.

I remember bringing her into my room for the first time on the fourth of July. She looked through all my jewelry, and loved it. She told me 'H' was her favorite letter, because it started the word 'Heaven'.

I remember playing Memory with her, and being surprised at how good she was at it.

I remember eating way too many peanut butter Oreos with her in our hotel room at GWL.

I remember relaxing in the hot tub with her at GWL.

I remember watching Lydia as she grabbed handfuls and handfuls of candy with the claw at the "R K". That was her favorite game there.

I remember her telling me she always wanted a sister, and then wished we were sisters.

You will always be my sister. I love you Lydia Gray Byrd. ♥"


written by Emma Voiles




"I had a sweet time with Lydia while leading "Big Church" at TMBC WEE. Our Bible story was "Lydia Hears About Jesus" based on Acts 16:9-15. I had her join me in front of the group and draped her in purple cloth while I told the story. She beamed that precious smile and was just beautiful robed in royalty.
WEE still miss you all so much."


written by Trish Battles






✵Please feel free to share in the comment section ~
your favorite memory that God has weaved into this trial.

Every good gift and every perfect gift 

is from above, 

coming down from the Father of lights 

with whom there is no variation 

or shadow due to change.

James 1:17

Safe and Secure ~ Under His Umbrella of Love

I so want to blog. 

I have so many thoughts filling my head.  I feel the need to unload them with words. 

I will start by giving back info. of this day....I'm gonna cheat and cut and paste my facebook statuses from today.

Post around 1pm~                                                                                                                 God has made known to us through today's MRI and wisdom of physicians that the unknown spots in Lydia's cerebellum are tumors and one in particular has grown tremendously since the scan done just 4 weeks ago. At this time Avastin will not be given b/c of possibility of shunt placement to help alleviate pressure in her precious head. Talking with neuro guys and making decisions today. Lydia is enjoying doing art with rec therapy. Would so appreciate prayers for guidance.                           

Post around 3pm~                                                                                                          Lydia is being admitted to the hospital. Possible add-on tomorrow for shunt placement. Currently waiting for a room. Please pray for calm nerves for her.      

Post around 6pm~                                                                                                              We are settled in her hospital room...she's watching "Barefoot Contessa" make a cake on TV while eating potato chips. : ) The Lord has been heavy on us and continues to provide us with indescribable peace in the midst of a storm. It's like we're underneath His umbrella of love, huddled close by Him while the rain pours. Thank you all for showering us in prayer.                                                                                                    

random thoughts

The past 2 nights I haven't slept much, not from anxiety, but because of overwhelming feeling to pray for her.  Amazingly, I have felt well rested even with little sleep.

It took 3 tries to get Lydia's IV in this morning.  By the time we got to the MRI suite she wanted me to go in with her for the scan.  The scan took about 50 minutes today....lots of time for me to sing, pray, reflect.  Thought of how God uses the number 7, perhaps He wants a certain 7 year old in Heaven with Him soon.  That's OK, she really is His anyway.

I remember when she was first diagnosed the thought of setting 4 places instead of 5 for meals just broke my heart.  Now, I'm comforted by reminding myself if she isn't sitting at my table, she's sitting at His.  And, as much as I love to decorate (especially her girly room) he has prepared a MUCH better place for her.

Overwhelmed by the love of others that has been poured out on us.  Comforted by the many prayers whispered for us.

God gives us just what we need, just when we need it.  His timing is so perfect.  He prepares us for the storm.  We need only to pay attention to His lessons.

I'm glad He doesn't reveal our future days, even though we are curious about how things will play out.  I think it would just make us more anxious, most likely robbing our joy.

So thankful for all the good days He has given us and dare I say some of the bad ones, too.  Some of the hardest days have had knitted within them some of the sweetest, most intimate, tender moments I wouldn't trade for anything.

He wants us to be aware of the glimpes of His goodness, living life with our eyes wide open to His gifts.  He wants a genuinely grateful heart that frequently utters words of thanks.
He gives gifts, we give thanks. (rough quote from One Thousand Gifts by Ann VosKamp)
It's our duty to thank Him......in all circumstances.

I feel His presence so heavy on me ~ like a mother who gets into bed with her sick child.   His comfort envelopes me.

Trusting in Him and accepting His perfect will for Lydia frees me from clinging to her,  allowing my hand to be held tightly in His as I walk this path.  I'm trying really hard to not get ahead of Him, but take only the next step right in front of me that He has purposed.

I find that what makes me cry quickest is the love for us seen in others.  I am so overwhelmed by their compassion.

These past two years have made me realize to not look at any place but Heaven as my home.  Feeling homesick today.  I think she is too.

When I was pregnant with Lydia my father passed away.  He never had the experience of holding his 1st grandchild.  Makes me smile to think of them meeting each other.

She sure looks pretty in her white gown tonight. ♥  

You keep him in perfect peace
   whose mind is stayed on you,
   because he trusts in you.
Trust in the LORD forever,
   for the LORD GOD is an everlasting rock.


Isaiah 26:3-4

Focusing on Faith, not fear

This morning appeared to be normal.

Until 8am.

Lydia said she must have slept wrong because her head was hurting.  I asked where. She told me the back.  I gave her Tylenol and shot Dr. Gold an e-mail, called Willie, and called my precious friend Kim to see if she could take the boys...  all while I began packing (and I must admit...coloring my hair...I was sure I had time to process).  God gave me clarity of mind to respond without overreacting.  So thankful for His guidance.  Willie was home in no time.  I quickly jumped into the shower.  In a few minutes he was in the bathroom telling me Lydia had gotten sick on her stomach.  He gave her Zofran and as soon as I got out of the shower I e-mailed Dr. Gold.  He was quick to respond and instructed me to give her an additional 2mg of Decadron.  Soon she was feeling much better.  Willie took Zoe to 4 Paws Dog Resort while I finished packing.  When he returned we quickly loaded up the kids and our bags.  When we pulled up to drop off Luke and Sam at the Voiles Resort for Byrd Boys all 6 of those sweet Voiles poured out of their home wearing "Love for Lydia" t-shirts!  ♡   Wish I had a picture of that sweet gaggle to insert right HERE ↓.








Glad that sweet image is etched in my noggin.
Their warm hugs sent us on our way.



God blessed us with beautiful blue skies as we travelled southwest.  Saw several clouds that looked perfect for Jesus to come on back.

Come, Lord Jesus.


Lydia munched on snacks and rested during the drive.

My mind was filled with thoughts of how God takes care of all the details and nudges us to get things done.  All weekend I had an overwhelming feeling to get things checked off our to-do list and a lot was accomplished.

We need not fear what is ahead of us, only deal with whatever God puts right in front of us.

Such freedom in knowing He plans our every step and His perfect will will be done.  

Trust.  

Focusing on Faith, not fear.

"In Life we can have a fear focus or a faith focus.  We can have a problem focus or a promise focus. What we choose to focus on makes all the difference in the world as to how we experience life."    ~Gary Oliver

                                         

Saw Dr. Gold today and will see him tomorrow after MRI.  Her last appointment (a little over a week ago) we discussed the option of Avastin.  It is a chemo drug that is used to treat radiation scar tissue and/or tumors.  Today Dr. Gold mentioned Lydia receiving her first dose tomorrow afternoon.  

After leaving the hospital we ate a late lunch at California Pizza and did a little shopping.

Yep. Red Velvet.  One of her favs.
I'd say she deserved it after this day.

Then we headed to the hotel...

                 father  and daughter watched some TV while momma blogged. :)

When the cares of my heart are many,

your consolations cheer my soul.

Psalm 94:19

⌘⌘⌘⌘⌘⌘⌘⌘⌘⌘

This is my comfort in affliction,

that your promise gives me life.

Psalm 119:50

We will be traveling to our birth state today for Lydia's upcoming MRI appointment bright and early  tomorrow morning.

Seems as though her gait and balance have progressively gotten worse over the weekend.

Many things about tomorrow,
I don't seem to understand;
But I know Who holds tomorrow,
And I know Who holds my hand

                                                           by Ira Stanphill

Thankful she is not experiencing any pain.
Thankful that when I feel weak, He gives me strength.
Thankful that His presence is heavy on us.
Thankful He is suppling unexplainable peace in the midst of this storm.

I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”  

John 16:33

(emphasis mine)

Less Wobbly Wednesday

Lydia is back to taking Decadron every day.  Before  I gave her medicine this morning I explained to her the rationale for going back to taking the steroid every day.  She agreed that this was  best because she wanted to be able to walk and she could deal with the side effects.  By lunch time her gait was much steadier.  Thankful she can walk independently again.

Her MRI has been moved up to this coming Tuesday at 7:45am.  We will see Dr. Gold after the scan.  She is anxious about the IV placement.  She had blood drawn last Friday and even though we used numbing cream she still experienced some discomfort.  Praying for calm nerves and successful, painless IV placement.

She has been busy writing a story pretty much the entire today.  Typing has been a great replacement rather than writing by hand.  Had to make her stop to go to bed tonight.  I love to witness her enjoying such a task.  Fills my heart with joy.

She stayed in this spot the majority of the day.

Thankful for our laptop.  

Found Luke reading to Sam today.

 Makes this 

momma smile.

Thankful for brotherly love.

 Thankful for that joyful expression and that sweet man of mine.

Rejoice always, 

pray without ceasing, 

give thanks in all circumstances; 

for this is the will of God in Christ Jesus for you. 

1 Thessalonians 5:16-18

Giving Him the Heavy Stuff

Lydia continues to have a great attitude despite daily challenges to adjust to her new normal.  She is now taking Decadron 2 mg every other day which was started this past Saturday.  Dr. Gold and Dr. Gershon suggested trying to taper the steroid down to lessen its side effects, but still help control the inflammation/swelling in her brain.  Her sleeping and eating patterns have returned to near normal, for which I am thankful.  Unfortunately, her balance has worsened causing her to reach for near objects to help stabilize herself as she's moving around.  She will quickly accept an extended hand for steadying which a few days ago she would usually politely smile and decline the offer.  Her hands are more jittery causing writing and small movements such as crafts to be more of a challenge.  We are communicating often with Dr. Gold to update him of Lydia's days.  I am thankful for my nursing background that helps me be a better care giver for her.  I often ponder if all my years in nursing were to ultimately prepare me for this trial.

Although her day has not been horrible, I have had a heavy day.  I have been quietly reminded of this passage throughout today...

Come to me, 

all who labor and are heavy laden, 

and I will give you rest. 

Take my yoke upon you, and learn from me, 

for I am gentle and lowly in heart, 

and you will find rest for your souls. 

For my yoke is easy, and my burden is light.

Matthew 11:28-30

The kids and I enjoyed a play date with precious friends this afternoon .  The boys enjoyed playing (loudly, I might add) while the girls made Shrinky Dinks, the mommas took advantage of private moments to share our thoughts.  Did us all some good to get out of the apartment.    I'm amazed how He tends to the little things of our lives.  God does give us just what we need, just when we need it.

Continuing to surrender her to the Great Physician, 

her Maker, Sustainer, and Savior.