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 me....in 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.