Wednesday, July 27, 2011

Breaking Down The Walls

I was contacted by a friend several days ago who asked me to speak to her book club about Hopey's heart. Her group was just completing the book, "When Crickets Cry" by Charles Martin, which is about a little girl in need of a heart transplant. It was decided my real-life experience in dealing with a heart patient might prove to be interesting for the group. Never one to turn down an invitation to speak about God's wonderful gift called Hopey, I immediately said "yes" and decided to read the book in order to gain the perspective of my audience. As it turned out, God's additional purpose for having me speak to that awesome group of women was because He knew I would devour every page of the fiction tale about a character struggling to conceal a hidden past that hauntingly continues to rear its ugly head. In the end, the star of the book is forced to confront his past which brings great hope to a community and new life to one little girl, Annie. In short, the book teaches a lesson in humility: Ultimately, God is God, and we are not.

To get a glimpse into my love affair for sweet Hopey, a person really has to see that ringlet curled bundle of joy in action. Since the women I would be speaking to have never seen or even heard of Hopey, I decided to bring her along. Lydia brought her guitar to help me kick off the evening, and dressed in a yellow dress topped with a big orange bow, Hopey walked, hand in mine, in tow. After a short introduction, Lydia began playing a Hopey favorite: "This Little Light of Mine".

If you know an individual who has Down Syndrome, you are aware they are the most honest individuals you will ever meet at every stage of life. Hence, they do not put on airs for any group of people. Ever. If they are in a good mood, you know it.....but if they are in a grumpy mood, they don't hide that either. More importantly, moods can (and often do) change quickly. Hopey has an uncanny sense of knowing when a group of people are open to her versus when a group is not comfortable with her disability. Last evening, thankfully, the book club was eager to get to know my little heart patient, and she sensed it immediately.

As soon as the music began, Hopey smiled, danced, tried her best to sing, and was friendly with most everyone. She even reached out to give a couple of hugs. To say she was a total "hit" would be an understatement. Hopey achieved my goal for her with flying colors: she showed the group that she is a real little girl....and that is a HUGE step in breaking down invisible barriers that divide the "typical world" from the "disabled world".

As you know, for many years the disabled were hidden away in institutions or left at home with sitters where they would be kept safe from stares, rude comments, and danger. An untintentional consequence of those actions was the general public, as a result, lacked the opportunity to relate to them during those years. Reminded of the old adage: "Out of sight, Out of mind",unfortunately, because the disabled were "out of sight" for so long, when the wave turned and parents of the disabled began bringing their children out in public again, a painful learning curve was set in motion that has taken 40 years to establish. It remains a work in progress, but as a nation, we are on the right track.

Parents with disabled children in my generation continue to tear down barriers with the help of "Special Olympics" @ , founded in 1968 by Eunice Kennedy Shriver...."Best Buddies" @ , founded by Anthony Kennedy Shriver in 1989....and the inclusive classrooms in our public schools. All of these serve to engage the community at large by purposefully forging relationships between the so-called "typical" and "disabled". Change takes time, just ask Joshua of old who didn't give up after circling the walled city of Jericho six times with no result. Pretty soon, it is my hope, we will live in a society without walls....a society that totally misses whether a person is black or white, has two legs or only one, and/or has an IQ of 70 or 120. In reality, each human life represents one uniquely and perfectly created by the Almighty who does not make mistakes. Jeremiah 29:11 reminds us that God has a plan and purpose for us all.

So my night with the book club ended well. Before leaving, one even told me she plans to make more of an effort to speak to the disabled....she admitted she sometimes hasn't known what to say or how she will be received. I loved her honesty. Parents of disabled children already know the "typical world" is uncomfortable; afterall, prior to having our "special ones" we were all part of the "typical world" too.

Chappy retrieved Hopey from the book club after the second verse of "This Little Light of Mine" and took her home so I could speak to the group. When I returned, she was already tucked into bed and fast asleep. As I looked upon her chest, rising and falling with each beat of a broken heart, I had to shake my head in wonder at how God continues to use such a fragile little girl to break down walls of misconception that were built with the best of intentions.

And it came to pass at the seventh time, when the priests blew with the trumpets, Joshua said unto the people: "Shout, for the Lord has given you the city." So the people shouted with a great shout, and the wall fell down flat. (from Joshua 6:16 and 20)

If you would like to break down the walls today by doing something tangible, please click on the following link that will lead you to the story of a little girl with Down Syndrome. A gift of only $10.00 or $20.00 could mean the difference of life and death for this little one; and the only thing separating Robyn from a forever family is money you and I might spend on a lunch for food she is literally starving for. A college student, Chelsea Pearce, who is "college poor", has taken on the challenge of raising adoption funds for Robyn. Her love for the "least of these" was spurred by her on-going relationship with Hope and Charlie. Here is her link:

Next blog post: Hope AND Charlie begin a new preschool year TOGETHER!!! (This should be interesting).

Wednesday, July 20, 2011

Hopey Update

Dear Blog,

Hopey's heart appointment was yesterday, and we were relieved to learn the aneurysm in her heart remains unchanged. The leaking in her aortic valve, however, has increased. It looks like Hopey will face a fourth open heart surgery at some point, but thankfully, not this year. When we left the hospital, I swear I felt 1000 pounds if a boulder had been lifted up off of my shoulders. And I could breathe again.

This has been a very interesting year for the Hollis family. Yes, compared to other families, every Hollis family year is unusual as we learn to navigate the unchartered waters of raising two young ones with Down Syndrome who currently lack communication skills and the ability to avoid danger. But in addition to our "usual" unusual, this year, twelve year old Natalie has been battling a seemingly unseen force to find her own identity through a Russian birth steeped in alcohol abuse that eventually led to an American adoption. At the same time, sixteen year old Caleb has made his best attempts to overcome raging hormones and flee from beautiful teenage girls who routinely offer sexual favors to him. The enemy has been hard at work attempting to steer Caleb and Natalie off of God's path for sure.

I am thankful for communication; without it, I am 100% convinced this family would be in trouble. When our children were very young, we started a tradition called "The Family Meeting". It began with a precious mother of 14 who used to work for my beloved handicapped grandmother. Her name was Goldie. If I sit and ponder for a moment, I can take myself back in time and hear Goldie's legs, covered by thick nursing stockings, rubbing together as she would slowly make her way down the hall. I can hear her cackling laughs of joy and feel her tight hugs. She came to work for my grandmother when I was only 3 days old, and I was by her side days before she drew her last breath when I was 20.

Goldie loved to tell me stories, especially when she was out on the back porch breaking green beans into a brown grocery sack. As I would sit beside her, probably more a hindrance than a help to her, she often told me stories about how she and her husband (Frank) would hold court at home in the evening with their many children. She would giggle as she would recall how fired up her husband had become at one of the children. Then she would shake her head with a smile and say: "Woo-hoo, Melanie, those kids are a handful." At a young age, I decided I would "hold court" in my family someday too....just like Goldie.

True to plan, each evening before bedtime, our family gathers in the Great Room to discuss our day. This is a time for everyone in the family to have an opportunity to talk about something that has brought them joy, something that is bothering them, a dream or a discouragement, a goal or an achievement. Since each member of the family has a turn to speak, and must say something according to the "unofficial rules", communication has become a natural way of life. Hopey and Charlie remain in the room as well, and Chappy never fails to turn to them and ask: "Anything to say tonight Hopey? how about you Charlie?" (I can't wait until one of them finally speaks up and surprises us all!)

When the big kids were young, Chappy and I used the family meetings to detect sibling rivalry and would use those moments to subtly promote peace among them. As our children have morphed into teenagers, though, Chappy and I find the family meetings have become valuable platforms where we can openly discuss peer pressure, temptations, good choices, bad choices, and consequences. Following each meeting, we remind them they can come into our bedroom to discuss more private issues (our door is open until 11pm). It never ceases to amaze us when we hear the occasional tap at our door around 11pm. On cue, Chappy turns to look at me with an "uh-oh" look on his face. Typically, those 11pm visits surround pretty serious subjects. We take a deep breath, put a smile on our faces, and open the door to whatever subject comes our way. Lately, Caleb has worn the paint on our door nearly bare (darn those teenage girls who just won't give up!)

The evening before Hope's heart appointment, the subject was, of course, "Miss Hopey". The kids wanted to spend time revisiting the possible "why" God chose to give Hope an extra chromosome and a very messed up heart. The discussion took a turn, however, that led to each of us naming the positive changes in our lives that have occurred because of Hope's condition. And as Hopey made her way around the Great Room in true Hopey fashion: retrieving hug after hug from each of us....spinning around on her tip-toes in the middle of the floor while dancing to songs playing in her head....plopping down with a flop on the ottoman followed by endless giggles....and occasionally pulling the dog's tail just to get a reaction....the verbal list looked something like this:

Caleb: "Without Hope, I probably would have taken my athletic gift for granted. Because of her, I want to make the most out of my life. I want to live the life Hope and Charlie will never have. I want them to be proud of me."

Lydia: "I would've never raised money to help save Darya, Evan, Sasha, and Carlene from the orphanages, because I wouldn't have known about Reece's Rainbow or Down Syndrome. Now I look forward to fundraising every December."

Natalie: "I love Hope and Charlie more than anyone else in the world, and I would never have known what that love feels like in my heart if Hope hadn't been born."

Chappy: "Hope coming into my life has softened me, made me slow down, and has caused me to reconsider what is really important in life."

Melanie: "Before Hopey, I was drowning in spiritual pride but could not see it. God used Hope to break me into pieces so He could re-make me into someone He could teach and use. Without Hopey, we wouldn't have known the red-headed blessing called Charlie."

We ended the evening in prayer for our little angel girl, prayers for healing and prayers of thanksgiving....prayers of gratitude for a creative God who uses the weak to confound the strong. Then we sang at the top of our lungs: "This Little Light Of Mine", to which Hopey came to life. Arms stretched out and smile plastered across her face, she tried her best to sing along with us. Her excitement was so great, at times she would have to stop to jump up and down and squeal with delight. We sang, and we sang, and we sang.....God met us there as he often does, and we wept together out of pure love for our little imperfect one who has brought so many unexpected blessings to our lives.

"God chose what is weak in the world to shame the strong" (1 Corinthians 1:27)

Sunday, July 3, 2011

16 Days From Today

Dear Blog,

It will be two years this October.....two years since Hope's third open heart surgery and the day I changed forever. "There is nothing we can do about the aneurysm in Hope's heart Mr. and Mrs. Hollis, we're very sorry"....though I distinctly heard the words with my ears, I fought them in my heart. "What does this mean....will she be able to live a normal life?" we asked, every fiber of our bodies seeming to plead along with our words for a positive reply as we asked the question. Four words have haunted us since that day: "We just don't know."

Since then I have lived in 5 month intervals. Following a 6 month heart check, I make a choice to pretend Hopey doesn't have an aneurysm in her heart for 5 months....but when we begin to near the date of the next appointment, life eerily stands still as the suffocating dread closes in on me again, sadly becoming an all too familiar visitor.

It is during these times, I have discovered, all of my senses go into hyper overdrive where very little escapes my notice. As has become almost customary, God again draws me and our family to the beach. He has much to teach this faith-craved student, and appears to believe this tactile learner learns most in the midst of His wondrous creation. So, while walking along the shore, I allow myself to drink in the Father's glory and abandon myself to Him.

Eager for His instruction, I first notice the ornate sizes and shapes of carefree fish zooming through the crashing waves and am reminded of the freedom God offers me because of a sacrifice made on my behalf eons ago; I hear the reverberation of thunder and witness cracks of lightning streak angrily from the sky into a once crystal blue sea turned black and consider the awesome power of the One I serve; then I giggle at funny looking sand crabs with big bugged eyes dance across the sand on imaginary tip-toes before diving into a hole I never even noticed only to find myself awed at finding true laughter in the midst of distress; coming upon a barely breathing jelly fish with long royal purple colored tentacles I see a lone piece of drift wood only a few feet away and use it to gently push him into the water for another opportunity at life when I suddenly recall scripture promising that each of our days have already been numbered. With each hour comes new reminders. By now I have surely repeated a thousand times: "I know, Father." But in all honesty, I'm not sure if I really do.

I still struggle with fear of the unknown; I guess that is part of adult life. Hopey seems to be seeing angels much more frequently, and I wonder why. It was just before her first open heart surgery when I learned about Hope's angels. In the pre-op waiting room, only minutes before she would be rolled out for surgery, the nurse non-chalantly whispered while taking Hope's blood pressure: "You are seeing your angels, aren't you Honey?" Not one to let a statement like that drop without some type of explanation, I asked the nurse to repeat herself. She shrugged and said with a smile: "I have been at this for a long time, and it happens with these little ones who can't speak alot...especially the ones who have Down Syndrome. Just watch her for a minute." And we did. In fact, we watched Hope for several minutes as her head turned from side to side and her eyes followed invisible friends all over the small curtained room, lighting up with a twinkle followed with a grin. "You see, I told you so. This little girl is being entertained by her angels."

I have seen those looks many times over the years since. Now I simply ask her: "Hopey, are you seeing angels?" She nods her head and flaps her hands with giggles. Lately, however, the events have been much more frequent, especially in the early morning. Hopey will raise her little arms and almost dance around while giggling out loud and looking from one angel friend to another. At times, her giggles are so intense she falls to the floor and rolls around uncontrollably laughing out loud. Chappy, the big kids and I become spectators until she finally spots us and comes to give us full hugs. No doubts remain in this family about the existence of angels, that's for sure, although we often debate about what the angel friends must be doing to make Hopey laugh so profoundly. And me, momma bear, I admit I find little comfort in knowing they could be the angels who would usher Hopey home to be with the Lord if her aneurysm did suddenly burst. I know an angel's job is not to give life or take life away, so I never try to speak to them---instead, I find myself requesting of the Almighty to give me more time. So far, thankfully, He has.

Hopey's heart condition has been a painful burden laced with significant lessons and opportunities. How many moms take their families for granted? I would guess many do. Since September 14, 2005, the day of Hopey's birth, I have not. From this aspect, my life was altered in a magnificent way. I truly live each day with my family as if it was the last we were all together. My motto: NO Regrets.

I routinely date my lover, belly laugh at all of Caleb's silly antics, happily take time to sit and write love songs with Lydia, feverishly work alongside Natalie as she attacks her learning disability, nibble at Hopeys toes and count her ribs for screams of delight and pick Charlie up for cuddles every time he crawls over and pulls up on my leg with a bright smile plastered across his cute little face (20+ times per day at least). I look at them...I mean I truly study their faces and features...I ask them countless questions so I will really know them...I hug them every time they are within arms reach saying "I love you" with each hug....I leave hidden love notes, praise every achievement, and cry with them when they're hurt...I watch hours of Barney and Sesame Street and have been changing diapers for 6 years straight (changing diapers for 2 babies for three years) without frustration. I take time each week to dance with them while singing at the top of my lungs, I make time to cook their favorite meals, and I kiss them goodnight every night. So while Hopey's aneurysm has brought much pain, it has also caused me to live life in a unique way. Since my family dynamic could literally change in an instant with a crude "pop" of Hope's heart, I live each day like it is our last. That has proven to be an unexpected blessing.

I hope others will learn from me. Life is fragile and fleeting. Refusing to consider the fact does not change it. And God continues to ask more and more of fact, I believe He is asking more of all of His children. Just this week, through the challenges I am facing in gathering needed faith for Hope's next heart appointment, God is calling me to not only serve my family well, but to step outside of my comfort zone and free myself to serve others. I hear Him telling me to lavish His love upon others, and even though I am arguing with Him about my lack of time, He is reminding me to be obedient...that He will provide the time and opportunity. I only need say "yes".

"But I am hurting, Father, shouldn't this be about me?" , I ask. And He laughs at me, because he knows that I know. I am not here to be served, but to serve. Only in humbling myself to His way will I know Him, because He already knows me so well---He routinely dates me, He laughs at all of my silly antics, He has written the song of my heart and sings it with me, patiently He works with me through my life challenges, and He hugs me when I draw near to Him.... never ceasing to say: "I love you". He dances with me, weeps with me, asks me questions, and studeis my face intently. It is me who needs to to know Him, the great lover of my soul.

Hope's next heart check is on July 19th, only 16 days from today.