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 lighter....as 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)