A few weeks back, I read this article that left the reader with one outstanding snippet of advice—make each day your masterpiece.
I decided to look it up, as I knew it had to be a quote from someone, somewhere. The quote came from John Wooden, one of the most revered coaches in all of sports history. "Make each day your masterpiece" was but a fraction of what the quote entailed and a cord was struck as I read it aloud. Here it is in it's entirety:
"Be true to yourself, help others, make each day your masterpiece, make
friendship a fine art, drink deeply from good books - especially the
Bible, build a shelter against a rainy day, give thanks for your
blessings and pray for guidance every day" - John Wooden
In the past two years, I've learned that you have to take it a day at a time. I've learned to be true to myself—to stand up for what I believe in and never take no for an answer. I've learned to no longer allow my family and me to be anyone else's scapegoat or doormat. I've tried to help others by being there in their times of need, as they were in mine. I've certainly learned that good friendships are something to be treasured, and I have forgotten about the facade of the bad ones.
I've learned that everyday should be filled with as much joy as possible, even when times get tough. I've drank from many good books, including the Bible. I hope I've built a shelter against a rainy day, and even when I get stuck in the downward spiral that can sometimes arouse from the stresses of everyday life and the fear of the unknown, I try to remember how blessed we are. I remember how blessed we are to have found out about Lukas' special heart months before his arrival—to have had that time to prepare. How blessed we are to have such an amazing team of doctors and supporters. Mostly, I thank God for the blessing that our miracle is still here with us. Seeing his joyful smile reassures me that things really do turn out okay sometimes.
And Lord knows I've been doing a lot of praying lately. I pray every night before I close my eyes for guidance and the strength to do the right things, to make the best decisions, to always be the best mother, wife, daughter, sister, and friend that I can be, and to help me navigate the turbulent times.
As you may or may not know, on May 23 I lost my grandmother. I felt very fortunate to have been with her as she took her final breath. I feel fortunate to have been by her side to tell her I loved her and to say goodbye to this woman who had such a profound impact on my life. But it wasn't easy and I've struggled a lot since. My grandmother was diagnosed with Alzheimer's in March 2012. In July 2012, we nearly lost her to pulmonary edema, congestive heart failure, renal failure, and a slew of other health issues. She never truly recovered from this ordeal. In the last days of her life, she had stopped eating and had whittled away to almost nothing. She had lost all recollection of who each of her loved ones were. She was constantly scared and anxious. She cried a lot, and I don't think I had ever seen my grandmother cry. The one person she always remembered without fail was my grandfather—my beloved Pap. We lost him in 2004 to liver cancer. In the last weeks of her life, she cried out for him. She missed him, and she needed him.
About two weeks before she passed, my mom told me about a dream she had. She said in her dream Pap was beautiful, healthy, and young, and my mom told him that Non (what I called my grandmother) really needed him now. My grandpa said he knew, and that he was coming to take care of her. She said in her dream, my grandfather reached over and placed his hand gently on my grandmother's leg, and suddenly my grandmother was young, healthy, and vibrant again. My mom said in that moment, she knew it wouldn't be long.
In the days before my grandmother passed, our family held constant vigil over her. Her breathing had slowed to about 2-3 breaths per minute, and we knew at any moment she could be gone. That final night my aunt, cousin, mom, step-dad, and I all stayed in her tiny studio apartment within the retirement community where she lived. My mom, aunt, and I slept on the floor—each of us waking every 20-minutes or so probably to make sure she was still with us. Early in the morning on May 23, the nurse came in to give my grandmother her medication (morphine to keep her comfortable). As he stepped away, she took her last breath and she went home to be with my grandfather. I miss them everyday, as they were both a big part of my life. Their old house holds thousands of beautiful memories for me, and I've driven by it many times since. My brother and I spent more time there than we did our own home, I think. It all just seems so final. And in many ways it still feels very surreal that they are both gone. Amid the sadness, I'm thankful they are free of their pain and they are together again after nearly 9-years apart.
Not even a month later, Lukas had his 6-month cardiology check-up. While still reeling from the loss of my grandmother, I thought his appointment would bring me some joy. Afterall, we do love Dr. Farrell. After Lukas' echo was complete, Dr. Farrell sat with Lukas and me to discuss what she had seen upon review. In her beautifully eloquent way, she told me that Lukas' gradient was about 10 points higher than his previous check-up, and that his conduit had some pretty significant stenosis (with some areas being more stenotic than others). Finally, Dr. Farrell shared that it might be worth a shot to do a heart cath—with a possible balloon angioplasty—to open his conduit up a bit and relieve some of the pressure, and that she would consult with her associate—Dr. Hoyer—who specializes in cath procedures to get his thoughts before making a final determination. Then, I am sure my demeanor visibly changed as she told me that if they couldn't do the cath or if it didn't give the results they had hoped for, the gorgeous boy sitting in my lap would likely need his conduit replaced this coming spring.
I left that office shaken while trying to collect my thoughts enough to summarize the appointment for those I knew would be calling. I got my boy in the car and cried for a minute before pulling myself together. Why him? Why now? I knew this conversation was coming, as it's the unfortunate side effect of his heart defect and—as Dr. Farrell said—we are in the maintenance stage now. But, I wasn't prepared to have the conversation so soon. Thankfully my mom was there to soothe my aching my heart. We had lunch together with our precious boy, and walked around talking about life and good things.
So, we've scheduled the cath with Dr. Hoyer. I'm scared and nervous, but hopeful maybe this can buy my sweet boy a little extra time before he needs another open heart surgery. I'm praying for guidance, and I'm thanking God for the blessings of modern medicine that allows us to know exactly what is happening with our boy and is equipping us with the tools to give him the best possible care. I'm feeling especially blessed that he's made it two years with no significant issues or additional interventions. We've not seen the inside of the hospital for any reason other than a regular check-up in over a year.
I'm making every single day our masterpiece with as many smiles and as much laughter as our house can hold. I'm drinking deeply from books and the advice of other heart parents. I'm staying true to myself and leaning on the valuable pieces of fine art that are my good friends, family, and my wonderfully thoughtful, supportive husband and children.
We will get through this and our sweet, beautiful boy will be all the better for it.
And just so you don't leave totally depressed—our boy is 2! Can you even believe that? We celebrated his second birthday with the people who mean the most to us (including my loving grandparents in Virginia, who celebrated with us long distance). It was a beautiful celebration of his life and all that he's achieved. And on June 20, we celebrated his second heart birthday—the day he got a second chance. I said a big prayer and a thank you to the amazingly talented Dr. Turrentine, who never gave up on Lukas and fought tirelessly for him.
So there you have it, friends. Life lately. Please pray for Lukas as he undergoes his heart cath, and please continue praying for the many heart families out there who are just beginning their journey and for those who are still walking this beautiful, sometimes tumultuous path.
John Wooden, thanks for the quote—and the life lesson.