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".

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!

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)

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!

"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 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.

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!