Saturday, October 31, 2009

Trick or Treat!




What a fun night at the Hollis house. In honor of Hope and Charlie, we all dressed in our Sesame Street best to greet the little candy hunters who came to our door. Caleb got home late, so he is not in the picture above. A friend of Lydia's happily "stood in" for Burt this evening. (Thanks Emma!) Caleb had a good excuse for missing tonight's event, however. His team won the MTAC Championship late this afternoon!! Congratulations Franklin Classical School Knights!!!

Charitable Organizations

W. Franklin Graham III, CEO of Billy Graham Evangelistic Association
12/31/08 compensation: $633,722.00
PLUS
W. Franklin Graham III, CEO of Samaritan's Purse
12/31/08 compensation: $308,826.00

Grand Total: $1.2 million if you add in his expense allowance.

Just so you'll know I'm not picking on Franklin:

Richard Stearns, President, World Vision: $336,472.00
Dennis Ryberg, CEO, Young Life: $279,338.00
Charles Stanley, President, In Touch Ministries: $226,704.00
Frances Jones, Executive VP, Feed the Children: $182,952.00
Wesley Stafford, President, Compassion International: $206,673.00

The list of salaries for "nonprofit executives" goes on and on.....I've just picked a few you are all probably familiar with.

My question is, what is a fair salary for these execs? It is a difficult question, isn't it?

A post script to the above Philanthropy Survey, Franklin Graham is now giving up one of the incomes. When the report came out, it apparently caused quite a stir. From now on, he will only receive income from Samaritan's Purse---which in both 2007 and 2008 (including all benefits) exceeded $500,000.00.

While Hope has been recuperating from surgery, I have been home alot more than usual. The doctor's orders were for her to stay away from public places for a month after surgery (only 12 days, 14 hours, and 51 minutes left----but who's counting, right?). Since I am her primary caretaker, I don't want to be exposed to germs and risk bringing them home to her, so I have been staying home and Chappy has been doing the running for the rest of the gang. On occasion, I have felt a bit stir crazy and have wanted to escape my house to step into Target (if for only a few minutes). However, I have tried to use this time to be productive.

So....with my time, I am self-publishing a book. And the best part is, I want to give the proceeds away.

There are two ministries I whole-heartedly believe in. Each sows almost every penny given back into their ministries:

1. Amazima Ministries (http://www.kissesfromkatie.blogspot.com/)
2. Reece's Rainbow Waiting Children (http://www.reecesrainbow.com/)

I am not computer savvy at all, so it is laughable that I would attempt such a feat. (In fact, I am laughing right now when I think about it). However, I want to do something.....and right now, trapped in the house for another two weeks, I have plenty of time to do something meaningful.

This is my plan:

35% of proceeds to Amazima Ministries
35% of proceeds to Reece's Rainbow Waiting Children
20% to be put aside for our future adoption of a waiting child with DS through Reece's Rainbow
10% of proceeds to be put aside for production/shipping costs

Many self-publishing companies charge a 20% royalty for every book sold; this would obviously defeat the purpose. As a result, I am doing all of the work myself. Not easy. Once it is complete, hopefully within the next 10-14 days, I'll give an update.

The holidays are near, and I want to give....I want to bless others.....don't you??? My plan is to keep the book as affordable as possible while still making enough profit to give money to Amazima and Reece's Rainbow.

That is my news of the day. I've been working on this for about three weeks now and have managed to keep it a secret. Won't it be fun to tally up the money that will go to Amazima and Reece's Rainbow? I am excited to see what the Lord will do with this project.

"Do not neglect to do good and to share what you have, for such sacrifices are pleasing to God."
Hebrews 13:16

Thursday, October 29, 2009

Ode To Hope's Glasses


She rips her glasses off her face,
When she's flustered, quick as a flash;
Across the room to begin my search,
I hurriedly make a mad dash.


***

They have landed in mashed potatoes,
Hit the back of our heads in the car;
Were almost flushed down the potty,
Have been stuck inside Lydia's guitar.

***

In the fireplace they have been hidden,
Deep in a toy box, beneath a chair;
Even thrown into a garbage can,
Thank goodness I thought to look there.


***

So full of smudges and scratches,
How on earth can she possibly see;
Please don't let the dog chew them again,
Is my nagging, but earnest plea.


***

Only if you have a young one in glasses,
Can you fully, to me, relate;
For the day Hope learns they are not a toy,
I can hardly wait!

***


"Open my eyes, that I may behold wondrous things out of your law."
(Psalm 119:18)

Wednesday, October 28, 2009

Hope For the Orphans

Last December, Lydia decided she wanted to raise money for orphan children with Down Syndrome through an organization called Reece's Rainbow. She made flyers and placed them in mailboxes throughout our neighborhood offering to babysit while parents went Christmas shopping. Many families responded, and the fundraiser was a success. To top off the celebration, Lydia told her dad she would forgo receiving Christmas gifts if he would match her donation. Happily, he did......and Lydia plans to do the same this year.

Since the month of October has been set aside for National Down Syndrome Awareness and the month of November has been set aside for National Adoption Awareness, I thought it would be interesting to combine the two.

I hope you'll take a few moments to watch the attached YouTube video. It is very compelling, because it beautifully shows the children without hope when they were stuck in an orphanage and then shows the transformation that took place after only a short while with their new families....no longer orphans. A little bit of love goes a mighty long way, and this video proves it!

P.S. The face on the video belongs to Micah....he is a little fella' Lydia's support went to help last December. He is one Lydia chose from the many. It turned out, a family in nearby Spring Hill adopted him, and now we are friends with the family. In fact, they are one of the three families who have young children with DS we go to church with. Is God amazing, or what??? He saw ahead and placed Micah in Lydia's heart through a photo on the Reece's Rainbow website long before our families would "officially" meet.

"Once our eyes are opened, we cannot pretend we don't know what to do. God, who weighs our hearts and keeps our souls, knows that we know, and holds us responsible to act."
Proverbs 24:12


Tuesday, October 27, 2009

Dad Is Out of Town....Can You Tell???









When dad goes out the door to leave town on business, many of the house rules go out the door with him.....especially the ones having to do with bedtime. Our evenings without dad consist of take-out pizza and late night movies piled in my bed with occasional tickle fights. All 6 of us! We miss dad when he's gone, don't get me wrong, but we put forth our very best effort to make the most from his absence.
Chappy has been gone since early Sunday morning, so the kids have had 2 late nights in a row.....a bit much for the 2 little ones. Today, the little night owls finally gave up the fight to keep up with the big kids and passed out asleep right where they were. These are pictures I took around 4pm this afternoon; aren't they dear?
You've gotta give 'em credit. Hope and Charlie may have extra chromosomes, and while everyone else may know about it, they don't seem to. Each day, they do their best to keep up with the big kids around the house, and I love 'em for it!!!
"Rest, little Hope and Charlie, in the Lord....." Psalm 37:7

Monday, October 26, 2009

Language for the "Special Ones"

Many children with Down Syndrome do not begin to verbally communicate until sometime between the age of 4 and 6. Some never communicate verbally. Hope, who just turned 4 in September, is still not communicating with us using words. She's making lots of sounds while using very expressive hand motions, so we believe speech is coming soon. When speech does eventually come, we know Hope will catch up on all of the lost time! Even though she doesn't communicate verbally, she communicates using different signs. Currently, she knows 50 signs.....but she only uses them when they benefit her. Ha! Ha!

When Hope turned one, we began three different therapies: Physical, Speech and Occupational Therapy. When I first met her speech therapist, I was surprised when she began teaching Hope sign language; but what a welcome relief! Hope picked up on it right away and was less frustrated, because she had a new way to tell me what she wanted or needed. Since we were learning this new language together, we completely understood one another (and still do!)

Above is a picture of Charlie and Hope sitting together this morning watching a new sign language video that was recommended by a friend. They LOVED it!!! They sat together for 30 minutes and watched the entire DVD without moving. I was able to sneak in and take a quick photo without disturbing them. Amazing. This is just another kind of "different" that goes along with a "special one".....it is not bad, at all.....just different!

"Who has made man's mouth? or who makes the dumb, or deaf, or the seeing or the blind? Have not I the Lord?" Exodus 4:10

Hope will speak at the precise time that has already been ordained by her heavenly Father, and not a moment sooner. I trust Him and can hardly wait! When she finally says, "Mommy", I believe all of Nashville will hear a big "hoop and holler"!!! Then, post celebration, I will fall on my face and thank the Lord.....



I have to brag on Caleb's football team for a second.....the Knights will play Aaron Academy for the MTAC Championship this Saturday!

Sunday, October 25, 2009

What is "Normal", anyway???




Life's no longer "normal",
But brimming with new-found fun;
Every day is unalike,
With my Special Ones.


Heaps of pursuit and therapy,
Have only just begun;
Still toting and changing diapers,
For my special ones.

Mealtime is oft a challenge,
You see, neither can be outdone;
Food is playfully thrown everywhere,
By my special ones.

A total joke is discipline,
No need to become undone;
For life is always a party,
For my special ones.

Learning time, I suggest,
Answered with hugs for everyone;
They'd rather love than do their work,
They're the special ones.

Placed into chosen families,
A gift from the Son;
Bringing boundless joy to share......
Sometimes more than your heart can bear.....
The special ones!

At the end of each day, Chappy and I sit around the Great Room with our older children to have prayer, Bible Study, and a "family meeting". During our time together, it is amazing how frequently we talk about Hopey and Charlie, often remarking how incredible it is to be loved so completely by them, and to in turn, love them so completely. Our cup truly runneth over.....they are little treasures....there is nothing else in the world like this gift!

"And I will give you treasures hidden in the darkness----secret riches . I will do this so you may know that I am the Lord, the God of Israel, the One Who calls you by name." Isaiah 45:3

Thursday, October 22, 2009

Follow Up Appointment Day!

We took Hopey back for her follow-up appointment with the surgeon today. Everything looks good! The surgeon will continue to evaluate her "Love Balloon" regularly, and we'll continue to hope and pray for no changes. As long as things remain the same, nothing more will need to be done! We are just trusting the Lord with Hope's little heart.

Have you seen the movie, "Faith Like Potatoes"?? We watched the movie last Saturday; the movie is available on DVD now. If you are looking for something that will inspire your family, I would suggest you find the movie and watch it this weekend. It is based on a true story about a farmer in Africa, and it has challenged our family to think more about life.....what our brief time on earth should be about.....the purpose of it all.

As believers, I guess if we really believe we will face the Almighty some day.....I mean believe it deep in our souls.......we will live our faith out every single moment......always mindful of the greater call in our lives.....the Kingdom that is to come! While this means different things to each of us, all of us who believe should be seeking ways to actively live out our faith in some tangible way.....continuing to dig deeper, stretch ourselves a bit further, give of ourselves until we are uncomfortable.....even giving sacrificially.....out of our love for the One who redeemed us and saved us. Knowing for certain, the day will come when our actions on earth are manifested in Glory.

Giving money is easy for many of us. It is a guilt-easer too. I know I've been guilty of throwing money at a problem.....letting someone else do the grunt work while I sat by feeling good about my "donation". Giving of our time, our talents, and our gifts......sharing our family......that's much more difficult.

Does that mean adopting an orphan who has been left with no family? Yes. Feeding the hungry? Yes. Loving the unloveable? Yes. Clothing the poor? Yes. Inviting those who are suffering hardships into our homes? Yes. Caring for Widows? Yes. If we, as a group, believe James 1:27 is accurate, then Yes: "Pure religion in the sight of God is this: to take care of widows and orphans who are suffering and to keep oneself unstained by the world".

You all know the list as much as I do; but isn't it difficult to schedule time for others? to be inconvenienced for others?

"Whatever you have done for the least of these.....you have done it for Me." The message that keeps ringing in my ear is the Father's voice saying: "How much do you love Me?" "What will you do for Me?" Over the last few months, my heart has been answering: "Anything".....The movie, "Faith Like Potatoes", just further confirmed it to me. If you take time to watch the movie, I am certain it will confirm the same in your spirit.

Chappy is going to have an awesome opportunity to do some mission work in Africa very soon. I am incredibly excited for him! Upon his return, I will be eager to sit down and hear how the Lord used the experience to speak new things to him. I know it is going to be life-changing. Who knows what will come from it? Something I do know, is that we are willing and open for God's "Anything".

Wednesday, October 21, 2009

Little Miss Mischief Wearing Her Elmo P.J.'s and Elmo Slippers....Sitting In Her Elmo Chair Surrounded By Stuffed Elmos.



"I hear kids with Down Syndrome are the sweetest kids"........
"Bless your heart, you have your hands full, but I hear they're sweet kids"......
"Does your little girl have Down Syndrome? I bet she's real sweet".....
If you are a parent of a child with Down Syndrome, can you even begin to count the number of times you have heard these same things??? Do you laugh about it like I do???
While Hope and Charlie do have an extra Chromosome, they are very "normal". And it will surprise some to know, they are also very, very smart! They do not communicate with words, but they communicate loud and clear.....both their likes and dislikes! I said I had a funny story to tell, and here goes:
Yesterday, Caleb and Lydia were gone to their homeschool tutorial classes, and I was at home with Natalie, Hopey and Charlie. It was a glorious day, so Natalie asked if she could do her school work out on the porch. I opened the windows to let fresh air in the house, and Natalie began her work outside one of the windows. From the time Hope awoke, I noticed she seemed to be acting more like herself....a bit feisty, but thought I could handle she and Charlie by myself without Natalie's extra set of eyes. I was wrong!
Hopey quickly took notice of the situation.....Hopey and Charlie.....and mom. Two against one. She seems to have forgotten she has just had open heart surgery, because she is beginning to feel better, so she will go about her regular business of playing and then move a certain way that "smarts" and brings such pain to her chest that she remembers with a tremendous cry! This has happened a few times, so I am keeping a closer eye on her to try to prevent her from doing something that might end up hurting her and/or causing damage to her chest.
Our morning began with Hope sneaking up the stairs before I could put the gate up to prevent her from climbing them......she isn't supposed to go up and down stairs so soon after surgery and frankly, since her surgery, she hasn't been feeling good enough to show interest in the steps. When I saw her on the stairs, I told myself to not freak out, because I didn't want to freak Hope out and cause her to fall. I began to walk slowly toward her and calmly spoke: "Wait just a minute Hopey until mommy can come help you." She understood every single word I said....... and took up those stairs so fast it was like she was running from a fire. My soft, calm voice turned into a shriek.....and my tiptoe became a full sprint. She laughed and laughed (communicating). I caught her.....at the top of the steps.....still laughing!
I carried her back downstairs, fed her breakfast, then took her into her play room while I exchanged the laundry from the washer to the dryer. The laundry room is right next to her play room, so I thought it seemed safe enough.
During the moment I turned my back, somehow she managed to get by me. I found out she had escaped when I heard a loud CRASH!!! I ran into the great room, and Hopey had pushed on the window screen, because she saw Natalie on the porch doing her school work and wanted to go outside too. I want you to know, she fell right through the screen.....onto the deck outside. PANIC!!!
I picked her up and rushed her to the bedroom to check her chest to make sure she hadn't split it open. Thankfully, she was fine. So, I left the laundry undone, sat with her in my lap and watched Barney and Elmo.
Charlie, eventually, became hungry and started whining (communicating). I put Hopey into her little fuzzy Elmo chair and went to fix him some food. As soon as I left Hope to go to the kitchen, only for a few moments, she saw another opportunity to escape and disappeared. When I came to give Charlie his food, she was gone!
By this time, Charlie had gone from a whine to a cry (communicating). I searched for Hope for a good 5 minutes.....I searched the entire downstairs! She isn't able to turn a door knob yet, but I even went outside looking for her just in case she had figured the door knob/lock out. By this time, Charlie was sssccccrreeeaaaammmiinnnggg!!! (communicating). Natalie was walking our dog, Trudy, so she couldn't help.....I was screaming as loud as Charlie.....screaming Hope's name (of course she is non-verbal, so she wasn't answering me, though she was probably using sign language to answer me---not helpful in a time like this).
I finally found her. She had gone into my closet and closed the door.....she can't work a door knob, so she couldn't get back out. When I opened the door, she just fell over giggling! She had heard me calling for her and thought it was the funniest thing!!! She thought she had played a hilarious joke on momma.....nearly gave me a panic attack.
So, for the remainder of the day, I put aside laundry, cooking, and basically everything else (I still fed Charlie, I just waited until Natalie returned to help me keep an eye on Hopey)....and I held the little stinker and watched Barney and Elmo till I thought I'd lose my mind! I could see the glint in Hope's eye......"at some point, mommy is going to have to go do something....then I'll escape again!" She was wrong. I didn't even go to the bathroom! Even though she is quite smart, after three strikes, that little Elmo Pajama Wearing four-year old girly girl in a pigtail was "OUT"!!!
Does this answer the question of how I deal with 5 children.....2 who are special needs children? I just do the best job I can do......housework, obviously is last on my "to-do" list.....I love them every single moment......marvel at their abilities.....help them deal with their disabilities......giggle at the craziness that greets me in a brand new way each day when they decide to step outside of their comfort zone and test new territory a bit......and am reminded each and every time I look into their faces, I AM the luckiest mom in the whole world.....and I wouldn't change a thing! My life is full of the unexpected.....overflowing with laughter......and I get hugs constantly. Perfect? Not even close. Perfect Love? I'd say pretty close!

Tuesday, October 20, 2009

Why Adopt a Child with Down Syndrome When You Already Have a Child with DS?


If I have been asked once, I have been asked 100 times.....why did you decide to adopt a child with Down Syndrome when there are so many "healthy" children in the world who need a family, too?
Can I say I would like to strangle those people??? Bless their hearts, they just don't get it.
I don't know whether we are finished with our adoption journey or not.....only God knows. However, I do know if I were given the choice to adopt a child with Down Syndrome or a child who is "normal", I would take the child who needs a family more.....the child who has the least potential of being adopted....the one everyone else is "afraid" to adopt.....the one with Down Syndrome!
What would I get in return? a child who will absolutely adore me the rest of his/her life......a child who will look for the best in every individual.....who will never notice color of skin or rank in society.....who will seek joy over anger.....who will be able to laugh at goofy things even as an adult.....who will have strong character formed through years of working diligently to overcome fingers that don't always cooperate and legs that move a bit slow......who will never tire of hugs......never feel a moment of hatred.....never get bored with life.....never worry about "fitting in" or "keeping up with the Jones's".....and I could go on and on.
Because of Hope and Charlie, our family is now part of an exclusive club called the DS Club. As soon as a person has a child with DS, he/she finds out immediately they have automatically become a member of the exclusive club. As members, we have the privilege of being involved in the lives of individuals of all ages who have DS, and it is wonderful. Through the experience, we have learned so much. When around an adult with DS, I have never experienced feelings of dread regarding Hope and Charlie becoming adults, instead, a peace fills my soul. Adults with Down Syndrome function in the world.....they add value through working regular jobs and being extremely involved in their communities. Down Syndrome has come a long, long way.
So, we didn't even hesitate when it came to having the opportunity to make Charlie a "Hollis". And our extended family has lovingly accepted our decision and have loved him as much as we do. He has a very soft, sweet nature; a person would have to work really hard to NOT LOVE Charlie.
Charlie's birth mom chose for us to have a closed adoption. At first I was hesitant about it, thinking it would be good for her to continue to be involved in his life on some kind of limited basis. Now, looking back, I realize she made the very best decision and had much more wisdom than I gave her credit for at 20 years of age. She wanted Charlie to be completely and totally ours. If she had remained involved in his life, I may not have had the opportunity to completely bond with him the way I have. I can speak for my feelings for him now.....it is as if he is a physical part of me....he is absolutely 100% my son.
I said in last night's post, and I will say it again here: Charlie's birth mom chose life when she could've chosen abortion. She was brave and strong; she carried Charlie for the full 9 months and then delivered him so he could have a good life, a full life, and a meaningful life. Her pregnancy was difficult, because folks would ask questions about the unborn baby she was carrying in her very large pregnant belly. She would keep a smile on her face and pretend she was an excited "mom-to-be", while knowing in her heart she was preparing to let her son go to be raised by another family. Can you see what an awesome young woman she is??? Our entire family will always be grateful to her for giving us such an incredible gift! We cherish our little Charlie.
I've had an interesting day with Hopey.....she is starting to feel much more like herself. I'll post a funny story tomorrow....well, it is funny now.....wasn't too funny today! When I stated above that Charlie has a soft, sweet nature.....please know, all kids with Down Syndrome are not alike. Hopey can, in fact, be a real stinker! (Even 8 days post open heart surgery)

Monday, October 19, 2009

About Little Charlie.....








Over the past 30 days, I have received several emails asking about our little Charlie. With the 30 day prayer focus on Hopey, I didn't spend any time explaining how we came to adopt him, so over the next couple of days, I thought I'd introduce our handsome red-head to you!


First of all, Chappy and I never imagined we would be called to lead a "Special Needs" family. It all began when we adopted 3 year old Natalie Grace from Russia in October of 2001. She had been in an orphanage her entire life, was the product of a mother who had been an orphan and who had used excessive alcohol during her pregnancy. While Natlie has some of the Fetal Alcohol Syndrome characteristics, such as difficulty with learning and focusing, fortunately, her case is somewhat mild. With loads of patience and perseverance, through homeschooling, Natalie and I have managed to stay close to target in her education. Thankfully, Natalie is a hard worker and wants to succeed.


Four years after adopting Natalie, Chappy and I learned we were expecting our love-bug, Hopey. Hope and I began physical therapy, occupational therapy, and speech therapy immediately after her 2nd open heart surgery. I was surprised to find I thoroughly enjoyed it! Chappy, the kiddos and I also realized we really, really loved our little special one......alot more than we expected to love her! So, we all started thinking we might like to add another "special one" to the family. ALL of us were excited and eager about the possibility! We were already traveling the "Special Needs" route with Hopey, so what was the big deal about adding one more cutie-pie to our days of therapy?


We began the adoption process by placing our names with Robin Steele who works with the Down Syndrome Association out of Cincinnati, Ohio. She facilitates adoptions of domestic children who have Down Syndrome, and is a tremendous advocate for the Down Syndrome community nation-wide. Within days, she called us about a little baby boy who was expected to be born in our area with Down Syndrome. Thrilled doesn't describe our emotions. After receiving the call during lunch one day, the kids and I jumped all around the room shouting and screaming. Hopey, jumped right along with us!


Soon after, I received a phone call from Charlie's birth mom and grandmother.....they wanted to meet us! We had them over for dinner so they could meet all of us and also see our home, where Charlie would be raised. Charlie's birth mother was single and only 20 years old; she desperately wanted to move forward with her life.....hoping to go to college and get a job. She simply wasn't ready to be a mother, but made the incredible, praise-worthy choice to give life to little Charlie when she could have chosen abortion. For that, our entire family will be eternally grateful to her. She gave us the most wonderful gift she could have given.....the cutest red-headed fella' in the whole world who is full of love and smiles. We are absolutely NUTS about Charlie!!!


More on Charlie tomorrow......


Hopey has had a "fair" day. She has been in alot more pain, sore from the surgery, and I have spent much of the day holding her and trying to bring comfort. It is hard to believe she had open heart surgery one week ago today. I praise God for getting her out of the hospital so quickly.....safe at home!

Sunday, October 18, 2009

"Hope's Love Balloon"


With every beat of her four year old heart,
A balloon escapes from the weakest part;
The walls are thick on either side,
But Hope's Love Balloon does slyly divide.

It's called strange and unique....a mystery,
For another like it, there is no case history;
Is it life threatening? No one knows for sure,
As of this moment, there isn't a cure.

Typically balloons are used for celebration,
This one, however, comes with much tribulation;
Even though we see it not with our physical eyes,
It's abiding presence in our lives, we cannot deny.

Is God big enough to be utterly involved?
Did He ordain....purpose...or is He somehow absolved?
Is the balloon a result of some hidden sin?
To admit my struggle makes me feel quite chagrin.

Once again, an unyielding choice must be made,
Armor on, sword ready, can't let Enemy invade;
Standing in faith for what we believe
Trusting God's Power Hope will continually receive.

Could He deflate the balloon and toss it away?
Cut the string and let it fly at break of day?
For certain He can, and I pray He just might,
Though if He doesn't, it is still alright.

A choice I have made, and I will not be shaken,
By God little Hope has not been forsaken;
This is all part of the path He specially designed,
When He first formed the thought of Hope in His mind.

So, steadfast, will I march toward God's unknowable call,
Determined to seek Him...to stand and not fall;
Hope's "Love Balloon" will accompany me wherever I go,
Placed inside my little one, to remind me, He is in control.

I am honored to be both Hope's mom and nurse right now....she is tired and sore, but she continues to push through with lots of smiles and hugs. Oh, how we love our little girl!

Friday, October 16, 2009

Friday, October 16th....We Are HOME!!!

Hope's Sisters dressed up like Elmo and Cookie Monster and took Hope for several rides in a wagon around the 6th floor. Elmo and Cookie Monster were also given the opportunity to visit other heart patients and bring some laughter and excitement to them!
Hope managed to smile even through her pain and distress.....here she is surrounded by the many stuffed animals that were sent to her room.....there were more, if you can believe it, but I couldn't fit them all in the picture.
We are thrilled to be home with Hopey! The hospital almost didn't release her, because the lower part of her left lung is still collapsed a bit. We convinced them, however, that she would do MUCH better at home. YEH!!! Consequently, we were trained on some respiratory therapy techniques and sent on our way.
We were able to ask some questions about the echo cardiogram today.....the aneurysm that was located on Hopey's heart, in particular. All I can say is we received many different opinions, some very optimistic and some very negative. In a nutshell, her condition is an anomaly. No one has ever seen anything quite like it. So, understandably, the doctors are concerned, but also unable to give a definitive prognosis. The surgeon, this afternoon, said: "Think of it like this....Hope's heart is unique....it makes her even more special". I like that positive attitude, so I have renamed the aneurysm (I have always hated that term anyway). It will now "officially" be called, "Hope's Love Balloon", since it expands and contracts with every beat of her sweet heart. She already had a Love Shack, and now she has a Love Balloon, too! Perfect.
Our plan of action is to responsibly follow up with regular echo cardiogram appointments to allow the cardiologists to watch the "Love Balloon" for growth and change. Meanwhile, the medical staff will continue to debate whether anything needs to be done or even can be done about it, and they will do research and attempt to find another case in the US that might mirror Hope's in some way to give them a point of reference.
Please know Chappy and I are united in our decision to trust the Lord completely with Hope. We had made that decision, as you know, before her surgery on Monday, and we have not faltered. While it was our desire to return home today with no further heart issues for Hopey, that was obviously not God's plan or purpose. He is not finished with this journey yet. The Lord has called Hope to this task, and we have been called, as her parents, to walk beside her. You, friends, I believe, have been sent by the Father for Hopey as well...... to cover her in prayer. I am hopeful that each time you hear the word "HOPE" used in a phrase or song, you will be prompted to breathe a word of prayer for little Hopey.....just a simple, "Father, Bless little Hope". Each faith-filled "breath" will then be used by the heavenlies to wash over her heart and continue to bring protection and healing.....this is the picture I have in my mind.
You see, this isn't about Hope at all. It is about each of us and what we can learn from a child......a disabled child who cannot even speak but says so much to everyone she comes in contact with. She continues to teach me and others through her strength and trust......her perserverance and joyful spirit.....her eager acceptance of different kinds of people and her willingness to be a friend to all who extend a hand to her. The elation I feel this evening, knowing she is safe and sound at home, is more than I can impart. Thank you, Jesus!
As we were about to leave the hospital today, a lady came in to clean our room. She didn't have alot to say to me, but had plenty of encouraging words and bright smiles for Hopey. At first Hope didn't respond to her. Throughout Hope's hospital stay, she feared many of the doctors and nurses since they always seemed to come with the stick of a needle or a prod of a finger. Often, the pain was just overwhelming for her. Eventually, Hope realized this lady was different and just wanted to be her friend. After sweeping the floor, the lady turned to walk out of the room. Just before leaving, however, she turned to me and simply said: "Your little girl is a soldier".
I couldn't speak.....words wouldn't come, but tears did. She left. That was my message today. It was a short one, but it was mighty clear. God's calling for Hopey is for her to be a little soldier. Why? I don't know. Possibly because He knows she will carry out her calling so beautifully. Finishing Strong! Managing to smile through the pain! That's it......Hope is a little soldier in this life......but in the Kingdom to come.....no more heart defect, and no more pain......she'll speak with clarity, she'll run with strong legs, and her hands will no longer be limited.
Thank you, Father, for choosing each of us to welcome home your little soldier today. May we have a "ticker tape" parade in our hearts....full of praise and thanksgiving! Hope fought her battle with great courage. Thank you for allowing us the opportunity to pray for her, and in doing so, empowering angels to surround her and protect her in all of her ways! Thank you for Your plan to use the weak to confound the strong, and thank you for the journey. May we glorify You in all we do as we answer "yes" to Your call! I believe in You.....Oh, sweet Jesus, I believe! Amen.

Thursday, October 15, 2009

9pm....Thursday evening

Today has been another interesting day.....will life ever be normal?

First of all, an echocardiogram was ordered. This is routine before releasing an open heart patient. The fellow who did the echo was someone new, Danny. During the process, I mentioned that I hoped he would be able to see what was left of Hopey's aneurysm. As he continued working, he asked: "You mean the one the surgeon removed?" I then told him there was some significant debate going on between the cardiologists as to whether some of the aneurysm remains in Hope's heart.

Immediately, he went to the area where he knew the aneurysm was supposed to be located.....the aneurysm that had never been seen by echo.....the aneurysm we were told could only be seen through more invasive procedures where Hope has to be put to sleep like a heart cath or MRI/Angio.

As he searched, I prayed.....then I would encourage him.....then I would pray.....then encourage....etc. All the while, I held Hope as still as possible and spoke softly to her while my mom fed her vanilla ice cream. Amazing. She was completely still and cooperative, which hasn't been her strong suit since being prodded by the medical staff continually for the last few days.

He found it! It has NEVER been seen by echo.....in over 4 years.....and Danny found it!!! What does this mean? I don't know yet. He took lots of pictures which were reviewed late today by the cardiologists who are experts in "imaging". We hope to find out tomorrow morning!

Second, Hope MAY be released tomorrow. I'm still in shock about it. When Hope entered the hospital, we were told it would probably be a 2 week stay. The surgeon felt she would have temporary heart block due to the extreme swelling that follows this type of surgery. She did not have a moment of heart block! The 8-10 days that are usually needed to overcome heart block, therefore, were not needed. On her two previous surgeries, she did have heart block. We are thrilled beyond belief the Father has chosen, this time, to spare her from a long hospital stay. Way to go, God! Way to go, Hopey!

Before releasing Hope, though, chest tubes have to be removed. The chest tubes are placed way up into her chest cavity....waaaaaay up in her chest cavity.....to drain blood post surgery. In her last 2 surgeries, I was asked to leave the room before they were removed, because it is so painful and traumatic to the patient. Today, I asked to stay, and they said yes. I knew I would see my baby in more pain than she has experienced in her life. I just wanted her to see me in the room during the procedure, because I also knew she would be more afraid than she had ever been in her life as well. The Nurse Practitioner, however, asked if I would like to stand beside Hope and hold her little head in my arms instead of just standing as a spectator. I was so thrilled with the trust she placed in me at that moment. Therefore, I was ab le to hold my baby's head in my arms, look into her eyes and speak to her during the entire ordeal. The scream that came from her was unlike any scream I've ever heard before. It cut through me like a knife and plunged deep into my heart. I was able to share the pain with Hopey. I believe I took some of her pain! Isn't that every mother's desire? It might sound odd, but at that moment, there is no where on earth I would've rather been.....the bond I already shared with Hopey as a result of her health issues strengthened and solidified even more today. What a privilege, and what a gift that Nurse Practitioner gave me!

Third, I had the opportunity to meet two sweet families this evening in my required CPR training. I have taken the training 6 times now, so if you ever need CPR, I'm a person you'd be fortunate to be around (ha!) I am required to take it after every hospital stay since Hopey is a heart patient. Better safe than sorry. Anyway, I was in the class with two other families who have newborns with heart defects.....both infants had just undergone their first open heart surgeries. One family lives in Knoxville and the other in Dothan, AL., so both are far from family and friends. I had the opportunity to love them this evening, and share my phone number with them for when they are in town for follow-up/additional procedures. Even though we live in different cities, I was able to establish a connection with each of them.....a person we all have in common. Accident? Of course not!

Last, I'm not sure if I shared this yet, but I'd like to mention it again, regardless. On Monday morning at 5am as we were entering the hospital, my "March for Hope" had become more like a "dragging my feet for Hope". I was dreading it so badly. Then, just as I came to the electric doors to enter the hospital, it hit me: There is a man in this hospital who has been medically trained and is able to save Hopey......and suddenly, I realized I shouldn't be marching toward the surgery floor, I should be running to the surgery floor! And peace washed over me.

The last two days have been filled with many ups and downs as we have learned more about the potential issues Hope may still have as a result of the remaining aneurysm.....the cardiologists words today were this: "If it ruptures, even though I do not believe it will, it would be catastrophic for Hope". OK, I had to digest that all day. But you know, tonight when I had the opportunity to minister to and encourage the two families who were placed in my life in my "umpteenth" CPR training, once again, a wonderful peace washed over me.

More than ever before, I am certain there is purpose in all things.....those parents needed me tonight, and I was here for them! (Chappy wasn't with me, because he was dealing with a flat tire----spare was flat too----it was raining----not a good evening for Chap!)

Depending on the news we receive from the cardiologists regarding the echo that was done today, our 30 day blog may be extended for a bit longer. I would love for you all to keep up and continue to make Hopey a part of your families. Afterall, because of Christ, we are all in the same family anyway, right?

WELCOME HOME PARTY WILL BE SOON!!! Thank you Lord, for sparing our girl......I am most thankful that your plan included allowing us to keep her with us for a bit longer.....I hope a LOT longer. No matter what is ahead, Father, I promise, here and now, to trust You!

Wednesday, October 14, 2009

8:35pm.....Wednesday Update

What a day! Our day began very early with a recommendation that we get an MRI as soon as possible to determine whether Hope still had a part of the aneurysm left in her heart. The urgency being that the aneurysm could be unpredictable and might need to be dealt with.

Throughout the day, we received at least 3 completely different opinions about Hope's condition from 6 different cardiac experts. The opinions were as varied as: "She still has an aneurysm that needs to be dealt with" to "I don't think it's an aneurysm at all, but possibly swelling/tissue from post surgery trauma"......"She needs an MRI right away" to "The MRI will be a waste of time and put unneeded stress on Hope"......"The aneurysm is very serious" to "I don't think the aneurysm is going to cause any issues even if it is still there".......etc. At many points during the day, we felt like screaming: "HELP!" As parents, we want to make the best possible decision for our little Hopey......however, we will be the first to admit we are ill-equipped when it comes to medical/heart knowledge. We certainly aren't doctors!

At 6:30pm, our lead cardiologist came through the door and put everything into new light for us. He was a God-send! I told him all of the opinions we had been receiving throughout the day, and how we were feeling pushed toward the MRI by many, but nervous about Hope having another procedure so soon after surgery. He laughed, pulled out his pager and said: "You think you have gotten alot of opinions today, my pager is FULL of messages from people in this hospital telling me what they think needs to be done with little Hope". Everyone wants to care for our girl.....it is really very sweet.

His answer to us was that we do not need to make a decision right now; and he does not feel this is an emergency situation. He encouraged us to get Hope home, allow her to recover, and then we'd talk about the MRI in a few months. PRAISE!!!!

Hope's heart situation is fairly complicated and involves more than I can go into here. During the chaos of getting so many differing opinions today, Chappy and I were able to stop and think about what we would be willing to put Hopey through. We agreed wholeheartedly that for right now, the little thing has been through enough, and we will trust God with the rest! Three heart surgeries in four years is alot......for now, it is plenty.

So, with excitement, we are planning ahead to Hopey's "Welcome Home" party which may be very soon. We can hardly wait! Wanna join us???

1:30pm on Wednesday.....quick update

We will meet with the surgeon in a couple of hours between two surgeries he is performing this afternoon. The cardio team's current plan is to do the MRI/Angiogram on Friday. Hope still has tubes in her chest, and she is still bleeding, so they want tubes removed and bleeding stopped before putting her to sleep again. I'll post more info later after we speak to the surgeon. Thank you so much for your continued prayer support.....I feel like Hope is becoming your little girl, too, as I read your comments. Your love for Hopey, a "special one" whom some of you have never met, is absolutely overwhelming and often brings me to tears.

9:35am on Wednesday.....Update

Hope's bleeding continued to slow throughout the night. Huge Praise! The fear was the chest tubes could've punctured her heart when the staff was moving her to another room. While they do not know what caused the sudden increase in blood, they join us in our celebration that it is slowing down. Chappy and I KNOW it slowed due to answered prayer.

At the moment, we are waiting to meet with the Cardiology/Surgery team this morning. They are trying to arrange with anesthesia to put Hopey back to sleep and do an angiogram/MRI today. The post-operative echo showed there is a good possibility the entire aneurysm was not removed during surgery. Some of it appears to still remain in Hope's heart, which can affect blood flow/routing. We knew it was difficult for the surgeon to know exactly where the aneurysm was located when he had her chest open, because it is in the posterior part of her heart, which makes it difficult to visualize since he is working through a tiny hole in her aorta. In addition, with no blood pumping through her heart during surgery, the aneurysm was not ballooning in and out. I am going to ask you, again, to pray with boldness throughout the day that first, the cardio surgical team will be able to find an available cardio anesthesiologist who can put Hope to sleep so the angiogram/MRI can be done as soon as possible. Second, that the aneurysm was completely removed during surgery afterall, leaving Hope's heart with no pressure or blood flow issues. And third, that the team will NOT desire to re-open Hope's chest and do another procedure.

I know our battle is not against flesh and blood----there is a very real dimension that is unseen to our eyes, but nonetheless, hard at work on a daily basis to undermine the Father. In your prayers, please pray against evil that would try to come against Hope in any way while she continues to recover. She is touching the hearts of many at the Children's Hospital, and I am sure the evil one would like nothing more than to interfere with God's tender plan for our little one. You all would be so proud of her. She has proven to be a strong little soldier---she is in alot pain, but still manages an occasional smile. Her throat is so sore due to the surgery, she can't eat or drink without alot of pain and gagging----but to make me happy, she tries. She is nauseous, and has thrown up a few times, but she keeps pushing through. I'm amazed at Hopey, and I love her more today than I've ever loved her!

Thank you in advance for your prayers.....thank you for making her a part of your lives! I'll update when I know anything, but sometimes information is slow coming.

12:15am....update

The bleeding is finally beginning to slow......Hopey will be monitored closely through the evening. Thank you for your prayers of faith. I shouldn't be surprised the Lord "nudged" so many of you to check the blog tonight, but yet, I find myself amazed again. Amazed in a wonderful way. Scripture says He searches the whole earth for those He can trust and find faithful. Scripture became alive.....living.....to me this evening as I personally witnessed His gathering of praying warriors. If you were part of that group, you can be sure you were called. How does that make you feel? I hope wonderful. Thank you so much. I have a feeling Hope's bleeding wouldn't have changed without your prayers. I really do believe He is using the praying warriors to bring about His perfect will. Hope is feeling fitful.....probably due to so much "attention" over the last few hours from the medical staff. I will be with her and not post until late morning when I know more, but I feel a peace that we are moving in the right direction again. "Call to Me and I will anwer you"......"Ask and you will receive" I praise you Father for taking a scary situation and making it a beautiful lesson of your intricate involvement in all of our lives. You could have answered my prayers and given me the blessing, but instead, you chose to involve many to pray for Hope this night and gave each praying warrior a blessing of seeing Your hand at work.....allowing all of us to experience You! I bless your Name as you continue to use our little imperfect Hope to teach me, and others, more about You.

Tuesday, October 13, 2009

9:20pm Tuesday the 13th

Hope needs prayer right now.....hopefully several people will check the blog before going to bed this evening. Hope was moved from Critical Care to the 6th floor. She is sharing a nurse with one other patient, so she is still getting alot of attention. Before moving her, her blood output was between 10-20 per hour........after moving her, in the first check, her blood output had increased to 40 in an hour......last check, a few minutes ago, her blood output was 80! Not a good trend. We DO NOT want her to be re-opened!!!! Please join us in praying that the bleeding will stop!!! Thank you in advance to whoever begins to feel a nudge in their spirit to check Hope's blog this evening, obeys, and prays.....Chappy is staying with me this evening as we stand by Hope's side.

5am Update

She did well through the night....she was put on Precedex to help her with pain and to stay somewhat sleepy. She's also been receiving Morphene and Tylenol. This morning, she will receive some more blood because her red blood cell count was low. Her bleeding is continuing to slow....receiving Lasix to pull of excess fluid.....vital signs stable other than when she was given a full dose of Morphene (it pulled her blood pressure down). She is a sweet, sweet girl. Has been restless throughout the night with pain. Today, I should be able to hold her. I think that will help. Thanks for continuing to pray as she recovers. "I will bless the Lord at all times, His praise will continually be on my mouth!"

Monday, October 12, 2009

6pm update

I cannot even express how good it feels to be sitting next to Hopey as I type this post. After surgery, she had an issue with bleeding......completely under control now. She is still on the vent., but the docs plan to wean her through the evening........total praise! Her blood pressure has been a bit erratic......getting it under control by trying different meds. She puckered up her bottom lip and pouted a few times, which tells me she is ready to be held and babied......cannot wait! She is still hooked up to a million tubes right now, but soon.

I have to admit, I really did give Hopey to the Lord. After 30 days of marching, I had actually come to a point where I was ready to accept HIS will......whatever that meant. I am thrilled beyond belief that HIS will is for Hope to not only live, but have what looks like a speedy recovery. I would be elated to be out of here in only 7 - 10 days! The nurses remind me that we are still in "Critical Care" with alot of balancing left to do, but I have a peace and assurance. My answer came from the Lord today.....loud and clear. My baby is coming home healed and whole.

I'll be by her side all evening. New rules in Critical Care.....I don't have to leave her for shift change. So, I'll update as I have a chance. Thank you all so much for your prayers. I know, without a shadow of a doubt, each and every prayer was needed for Hope today. Those of you who prayed mightily for our girl, you were called for that purpose. Some day, in the Kingdom to Come, you'll see exactly how your prayer was used today.....and some day, my little Hopey, in that Kingdom, will have words to speak and will be able to hug your neck and say thank you!

Hope is out of Surgery!!! It's a Miracle!!!

Praying Warriors, God has heard your prayers......our prayers.....and He has answered! Hope is being sewn up as I am typing. We get to see her in an hour. The surgeon was more than pleased with the outcome.....the 7 hour surgery that was expected ended up taking only 3 1/2 hours!!! Half the time!!! AND, she was expected to have a 2 week stay to recover, and the surgeon said he wouldn't be surprised if she gets to go home in a week!!! Again, half the time!!! I think I just needed to get out of the way, completely trust the Lover of Hope's soul, and let God. Praise God from whom all blessings flow. He is sooooooo good! He is Healer! He does answer prayer! He is real....totally and completely real! May He be glorified through all of this.....lifted high!

2nd Update

Hope has successfully been placed on the lung by-pass machine, and the surgery team is now working on her heart. I cannot bear to allow myself to picture what she must look like right now, so I'll paint you a picture of what she looked like this morning when we brought her in....our four year old on the Vanderbilt Hospital runway: At 5:30 am, Hope was sporting the latest in Sesame Street Fashion: hot pink flannel p.j.s covered in smiling red elmo faces.....the crowning touch was a large hot pink bow that topped the curly brown pony tail on top of her head. Adorable. Lord, please protect our baby girl, and bless the surgeon's hands as he carefully begins to repair her little heart.

First Surgery Update....

Hope went to the doc smiling this morning with her 3 bears and elmo in tow. We just rec'd a call to let us know they are beginning to open her chest. Because of all the scar tissue from her previous 2 open heart surgeries, they estimate it will take an hour and 1/2 to get through all of the scar tissue in order to get to her heart to begin the actual surgery.

Sunday, October 11, 2009

It's me......Hope's Dad


Hi, I'm Hope's Dad and I've been given the honor of writing the final blog before surgery. Thirty days ago marked the beginning of a countdown to a heart procedure that will shape Hope's life, we pray, for the better. Instead of dwelling on the negative, our family chose to give thanks to the Father for Hope, an extraordinary blessing in a less than perfect package. Lest you think I am referring to her down syndrome, that's not it at all. That extra chromosone defines her little personality in such a beautiful and appealing way. It was only her heart that didn't turn out perfectly.
The 30 day blog--what a neat way to share the goodness that God has manifested through Hope's life these past four years. I am so proud of my wife, Melanie, for figuring out how to set up the blog on her own, introducing Hope to many new faces, enlisting prayer support, and being honest with the struggles she has had. I am amazed and moved by her writing skills and her ability to connect. I'm also so proud of my other children for embracing this quest to have a meaningful celebration of Hope's life. Their ideas made for a fun experience.
For those of you who have followed the blog and have continually lifted Hope up in prayer, I thank you and I pray many blessings for you and your families. Your faithfulness has encouraged us on a daily basis. Thanks, also, for everyone who wrote or painted in Hope's Love Shack as well as those of you from out of town who sent signed cards and paintings. We will be forever grateful. Many thanks to those who were able to come and march with us tonight.
My heart is heavy as tomorrow is fast approaching. I know the Father is in control and I trust Him, but as a parent I hurt for my child. I wish I could step in her stead and take all the pain that is coming her way.......Father, please hear my cry for mercy on little Hope, restore her heart, and give her many more years on this earth. I remind you of your Word in Deuteronomy 7:6 that says" Out of all the people on the face of the earth, the Lord has chosen you(Hope) to be His special, treasured possession" and that you are the God of "Hope" filling all that trust in you with joy and peace so that we may overflow with "Hope" by the power of your Spirit(Romans 15:13). I trust in You, the God of Hope for our little Hope. Amen.

Saturday, October 10, 2009

Marching For Hopey.....1 more day!




I began working on this post around 10:00pm on Saturday evening, and it is now 2:00am on Sunday morning. The big kids have been up and down all evening asking questions about Hope's surgery......trying to understand what they should expect. Tomorrow is Hope's surgery day. It is hard for me to grasp. 30 days have flown by for our family. As you all know, we have spent the last 10 days celebrating with Hope! The celebration began at the beach and was supposed to end Saturday evening in "Hope's Love Shack" with many, many glow sticks hanging all around and a special time of family prayer. However, our little soldier had different plans for her evening and fell fast asleep. So, we'll save the glow sticks for her return home celebration. That's a better idea anyway.


I awoke Saturday morning with a familiar friend....."Fear". I recognized him right off, because he lived with me during the first 3 months of Hope's life when we were preparing for her first open heart surgery and again when she underwent her second open heart surgery at age 1. "Fear" was not invited this morning; in fact, he has been officially banned from my life. Nonetheless, he managed to sneak in during my sleep last night and attached himself to me.


All day, I walked around with a stone lodged in my chest. I could feel it's exact location, size and shape. It became so real that I felt if I could only open my chest, I could remove it with my hands. My legs, they became like noodles.....my stomach, full of butterflies. And breathing.....I frequently reminded myself to do it. The world was in constant movement all around me, but "my personal space" remained completely still and quiet. When people spoke to me, I would remind myself to intently focus on their words; although I could hear noise, I had a difficult time deciphering questions and statements.
You know what I fear? I fear what Hope is going to have to endure. I hate that she is going to have to go through this surgery......I hate that she is going to feel so much pain. If Hope were a "regular" 4 year old little girl who was about to undergo an open heart surgery, I would sit her down and talk with her about the procedure. I might use props from the hospital to allow her to visualize what the process would be like. I would spend a lot of time telling her that she would wake up from surgery and not be able to move her body, because the doctor would be giving her medicine that would put her body to sleep for awhile. I would explain that she would awake to many strange, annoying noises.......a flurry of activity from nurses she has never met.....that she'd have tubes sticking in every part of her body.....that it would be normal for her to feel nauseous....that she wouldn't be going home for many days.....that she wouldn't be able to eat food for a period of time.....that she would experience pain in her chest.....etc.
But I don't have a "regular" 4 year old little girl. Hope is a 4 year old with a disability. She will awake to every single thing I just mentioned, but her disabiltiy will prevent her from being able to understand. Instead, she will be confused and scared. I will see the fear in her eyes, but I will not be able to pick her up and hold her. She'll see mommy standing by her side, and she'll wonder why I'm not rescuing her......why I'm not making things better.


In absolute desperation, I am doing the only thing I know to do. I am on my face at the feet of Jesus praying, and these are the precious jewels He has given me:
First, I recognize and bow down to WHO is in control of Hope. God has had His purpose and plan for Hope's life since the beginning of creation....His plan is set and is in motion.



Second, as a believer and as Hope's mommy, I must grab hold of the Lord's hand (while He carries Hope in His arms) and march toward the prize, His Plan, that is just ahead of me. That prize may be total healing for Hope......that is what I am "faithing" for. But if it is not, I will still make a choice to humbly accept His perfect plan.....recognizing again that He is God and I am not.


Last, I must believe the Lord will send angels to guard and protect Hopey. When she opens her eyes after surgery, angels will be surrounding her with warm, friendly faces. She will see them with her eyes and hear their words of comfort. There will be a hedge about my little one so evil will have no place in her room in ICU. As a result, the angels will be free and unhindered to minister to Hope.
If I am to truly believe there is a Creator of the Universe......One who set everything in motion and who is in complete control of all things....then I must live what I believe. Well, Praise God, I do believe! So, in response to my belief, I MUST live it out, which means totally surrendering everything to Him.....everything.....even Hopey. THAT is what I am doing.....sometimes daily, but often, minute by minute.


When I walk into that hospital on Monday morning, I know I will have demons nipping at my heels trying to hang onto me.....just like "Fear" did on Saturday. I will have a choice to make. I can be dragged down into the mire and give in to despair......OR......I can stand up, believe in the Lord and have Hope! Good grief, given the two, is there really a choice? It seems so apparent and so simple to me right now. Of course, I choose Hope!!! In choosing to believe, even though I may not emotionally "feel" like believing, "Fear" and all of his evil companions are defused completely. They lose their sting and cannot touch me. I become a waste of their time, because I choose God no matter the outcome!!! THAT is the secret to Faith. "Fear"? He disappears. God? He becomes even more undeniable. Isn't that wonderful?
I know the next days are not going to be easy; in fact, they may be the most difficult of my life. I have no idea how I am going to manage other than to say I have made a choice. I will take it step by step.....day by day......and when doubt creeps in, I will shut him out by speaking aloud the Word of the Lord and my trust in His plan.....and then I will continue to walk in it.


Sunday evening, at 6pm, as planned, we will be making a final march around our home. We have marched for 30 days. The march has been a symbol of our march toward God's plan for our family. Each day we have stepped closer and closer to His Will.....each day we have become more resolute in our decision to accept His plan for our lives. If you would like to march with us tomorrow evening, in prayer for Hope, please feel free to join us!


And to my sweet little Hopey,
I love you with my whole heart. If God were to line up all the little 4 year old girls in the whole world.....the prettiest, the most talented, the smartest.....all of them. And then if He said to me: "Melanie, let's go back in time to September 14, 2005 when Hope was born. Now, this time, you get to choose which daughter you want." I promise, Hopey, I would run as fast as my legs would take me, straight to you, without a moment's hesitation. I would pass every other little girl and shout aloud to the Father....."This one! She is the one I want!" Hopey, I would not change a single thing about you, and I am so thankful you are in my life. "He will cover you, baby girl, with his feathers, and under His wings you will find refuge; His faithfulness will be your shield and rampart. You will not fear the terror of night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday. A thousand may fall at your side, ten thousand at your right hand, but it will not come near you......For He will command His angels concerning you to guard you in all your ways". Stay strong little soldier! I am so very proud of you.....and I am even more proud to be called your "mommy".



Marching For Hope!!! Believing For Hope!!!

Friday, October 9, 2009

Consuming Cake.....2 more days and counting

FAITH IS......

SEEING LIGHT WITH YOUR HEART.....

WHEN ALL YOUR EYES CAN SEE..........



IS DARKNESS AHEAD........


FAITHING WITH EVERYTHING IN ME.... MY SWEET HOPEY!




Thursday, October 8, 2009

Our Princess....3 more days!


I............
DON'T..........


KNOW...............




WHAT..............




I WOULD DO............




WITHOUT............


YOU!!!!!!!!!















Today was a gorgeous day......truly a gift of sunshine from the Lord! We spent ALL day outside. We hooked up 3 bubble machines, blew bubbles ourselves, danced, played music, and enjoyed our time together.....being absolutely covered in bubbles by the end of the day and not caring one single bit!


Hope has so much energy, it is difficult to believe she is in such need of heart surgery. Today was a tough day for me emotionally; I laughed one minute while dancing with Hope and then boo-hoo'd the next while cradling her in my arms. To everyone who has taken time from your busy schedules to stop by these last couple of weeks to check in on us, I want to say thank you from the bottom of my heart. Your visits, your smiles, and your love for Hope have helped me more than you can imagine....you have been the arms of the Father to me....arms I have desperately needed!

Only 3 more days.....I can't believe it.

Wednesday, October 7, 2009

Bubble Wrap Bonanza.....4 days and counting




Tonight's celebration included taping bubble wrap to the floors in our great room, kitchen, and entry way. Hope (and the big kids) stomped all around popping with each step! Isn't that every kids dream??? They enjoyed it so much, we decided to leave it down through tomorrow too (at least until all of the bubbles are popped).

Also, we met with the surgeon today at Hope's pre-op appt. We didn't learn anything new; however, he drew a picture of Hope's heart condition and then described (on our level) what he intends to do during surgery.....his "plan of action". Thankfully, it made some sense to us.

Finally, Sunday will mark our very last "March for Hope" around our house. 30 days have flown by. We will be marching at 6pm on Sunday evening if anyone wants to join us. We will end the march with a prayer for our baby girl.....thank you, again, for all of your many prayers.....we continue to expect BIG THINGS!!!

Tuesday, October 6, 2009

Toilet Tissue Tousle.....5 days and counting!












We are getting ready to go to Vanderbilt this morning for Hope's pre-op work and to meet with her surgeon. I'm not looking forward to it at all. To be honest, I have thoroughly enjoyed being silly with the kids the last several days. The kids and I have been spending alot of time in the house together since Hope is limited from outside activities and from being around heavily populated areas at the moment (Dr.'s orders), so planning nutty things for us to do together as a family has been fun! Meanwhile, unfortunately, "REALITY" has also been busy........busy preparing to force itself upon us.

Monday, October 5, 2009

Stair Surfing......6 Days and Counting

Yes, we did.....While this will probably freak the grandparents out when they see it.....the kids had a total blast! They slid down the stairs over and over and over again. As soon as Caleb slid down the stairs with Hope, she jumped up and started climbing the stairs again......living life and loving it! Ain't it grand?

Sunday, October 4, 2009

Mattress Mania.....7 Days and Counting

Tonight, we pulled 5 twin mattresses from the kids' beds and covered the rec. room floor with them for "jumping WITHOUT the bed" instead of " jumping on the bed"!!! We continue to march in celebration for our little "Happy Hopey"! The love we have for this little gal the Father has placed in our lives is just overflowing.....more than our hearts can handle.

Saturday, October 3, 2009

Spaghetti Bath.....8 Days and Counting

Hope began her "Spaghetti Bath" all tidy and lady-like.....it ended QUITE different than it began! ENJOY the video.....it starts slow, but ends with Hope (and everything else) covered in noodles. Such fun!

Friday, October 2, 2009

Dancing at Half Time...9 more days



Hope had a big time this evening at big brother, Caleb's, football game......at half time, she went out on the field and danced until her little body was exhausted. She LOVED it (and so did the spectators who watched her).
In addition, today, we had some special visitors.....Kelley and Ali drove all the way from Cleveland, TN to sign Hope's Love Shack and have lunch with us, Liz stopped by to join us for lunch, Gi Gi and Poppy came from out of town to visit and attend the football game, and Alex spent the day with us, signed the Love Shack and joined us for the football game as well! Busy day with loads of love from alot of people!
Please feel free to stop by to write a prayer or thought in the shack....you do not have to call first. I am a true Southerner when it comes to guests: "Ya'll come by anytime, ya hear?"
We are having so much fun thinking of "out of the box" stuff that a 4 year old would enjoy....stay tuned for some pretty goofy stuff. The kids are particularly excited about tomorrow's surprise!
Still marching for our little Hope....marching forward with Joy....feeling like the most blessed family in the world to have "Hope" in our lives. (literally and figuratively)

Thursday, October 1, 2009

Pudding Party....10 Days and Counting

Happy....


Heart-warming....


Hungry.....Very Hungry.....




Have some pudding, Lydia!




Huh? Did you say I can have all I want???




Hey....She did say I can have all I want!!!!






THE CELEBRATION HAS OFFICIALLY BEGUN!!!