“This girl is just so happy,” I said to my husband, laughing. Our smiling, bouncing toddler turned and looked me square in the eye with her cheeky, toothy grin and squealed, “Appeee! Appeee!” Joey and I looked at each other, mouths dropped. “Did she just say happy?” he asked. Upon hearing her new word, specifically, her FIRST word, this time out of her daddy’s lips she shrieked another high pitched rendition of “Apppeeeee.” After a second round, it was obvious that Belle’s first word wasn’t going to be “No,” or “Mama,” or “Dada” as one would expect. Nope, not this little one. Her first word would be, “Happy.” Tears flooded my eyes at the irony of it. So we have this little girl who spent the first two months of her life in the hospital, has been dependent on IV nutrition since the day she was born, has had multiple surgical procedures and invasive testing, been air lifted 3 times, can’t do SOME things, but whom can do MANY things, is small in stature, but mighty in heart, and what does she say but, “happy.” Just a few weeks earlier, our full-time nurse said something to me that I had to let sit for awhile, She said, “You know, she has every reason in the world to be angry and fussy, and yet, she is one of the happiest little girls I’ve ever seen.” The Oxford English Dictionary carries some 171,476 English words, and out of all of those words, she would choose “Happy.” as her first. Now, I have to be honest and share that that same nurse confessed she has been working with Belle on saying the word “happy” for weeks leading up to my birthday with hopes she would say something close to “Happy Birthday” to me. In the same breath, I have been pushing “Mama” and Joey has been pushing “Dada” for months with no success. Since I see all of life through a spiritual lens, and I constantly seek to learn the lessons Jesus has for me through prayer, His word, Godly counsel, and even life situations, I can’t help but be challenged spiritually through this event. It draws my heart to spiritual truths and my chronically sick baby, ironically saying “Happy” as her first word, ministers straight to my soul.
Mostly people are incredibly encouraging and kind. But sometimes people make comments (innocently) that cut. One such comment is anytime anyone makes reference to Belle being a burden in our life and/or feeling sorry for us. We don’t feel sorry for ourselves. And truly, Belle and Jonah are the greatest blessings in our lives. We are honored to care for Belle. It’s hard, really hard some days. But when people make comments about feeling sorry for me because I’m young, or if I have regrets or wish I had done more before “this” happened, etc. etc., I really have to bite my tongue. Life with Belle is the most amazing adventure I have ever traveled. No trip across the world (and I’ve taken them), no hike up a 14,000 footer (and I’ve hiked them), no scuba dive in the most beautiful reef (which I’ve done), no higher education (which I have), not falling in love (now THAT’s a story…), not getting my dream job (which I landed), none of these things have challenged my heart, grown me more, made me better, made me feel every emotion more deeply, and most of all, made me SEE JESUS more than the day He BLESSED me with my sweet girl, be it so, my sweet, sick girl. By no means am I trying to glorify this road. I would have never chosen this for her. All I’m saying is please don’t feel sorry for us, at least not in the way that paints Belle to be a burden in our lives. We appreciate and covet your prayers. We are beyond grateful for help, because yes, she is high maintenance, and we hurt at times more than you can imagine, but please never, never pity us because we are blessed beyond belief to walk alongside our happy girl in this difficult journey.
THE JOY OF THE LORD
One way we avoid having pity parties for ourselves is by choosing joy. Anabelle really is the happiest little girl you can imagine. She has the sweetest huge grin, runs around the house letting out the most high pitched squeals, and claps her hands and blows kisses all day long. She is relentless and never backs down when she wants something. She is way more of a “stinker” than her brother was at the age of one, and we constantly have to chase her and remove her from behind big toys, under furniture, and from trying to climb up the steps when we aren’t looking. She is happiest playing with her brother or when she is running around a group of other kids. Belle may have found her happy, but everyone knows that happiness is a temporary emotion that comes and goes. As Belle gets older, and she becomes more aware of her situation, I don’t doubt we will have a lot to work through with her. To be honest though, that isn’t completely different than any teenager trying to navigate life. So how will we do it? We are already prayerfully asking God how to develop a deeper joy in her in the mist of her trying situation. We have resolved to teach her not to feel sorry for herself, but to be thankful for all the blessings she has been given. We believe that true joy, unwavering contentment, and steadfastness all come from having an understanding of truth, a personal relationship with Jesus, a heart of gratitude, and a relentless faith in who He is.
(I want to premise the next section by saying, we definitely have times of sadness. Sometimes they last for a long time. I’m also not talking about clinical depression. I’m talking about an underlying joy that allows a person going through a terribly difficult situation to still wake up in the morning, laugh with a friend, hug her babies, enjoy a cool breeze, function in society, -the ability to practice “Even If” joy.
“Then you will know the truth, and the truth will set you free.” John 8:38
Joy starts with truth. We live in a society where up is down, bad is good, and wrong is right. Most of what this world teaches to be true is in direct opposition to what the Bible teaches. I recently heard on a popular radio station that amongst people who would consider themselves “Bible believing Christians,” only 20% actually read the Bible on a regular basis. We believe truth does exist. We also don’t trust any human being, scientist, pastor, doctor, educator, etc. etc. (including ourselves!!!) to be wise enough to determine what is true and what is not. Therefore, we choose to go to the original source of truth, God’s word, and make that the starting point for everything else in our lives. It’s also where we start with our children. Joy starts with clearing the fog of what the world tries to teach our children is true, and replacing the madness with Biblical truth. Our plan for cultivating joy in Belle is to start right now by teaching her the truth.
A PERSONAL RELATIONSHIP WITH JESUS
I pray that the eyes of your heart may be enlightened in order that you may know the hope to which He has called you, the riches of His glorious inheritance in His holy people. Ephesians 1:18
We can teach our kids Biblical truth, but we aren’t naive enough to think we can force them to accept Jesus as Lord and desire a personal relationship with Him. We would be wrong to do so as we firmly believe it is their decision just like it’s any person’s decision to choose to follow Jesus or not. I can’t beat nor badger nor baptize it in to them. What I can do and what I do regularly is pray for my children constantly, that the Lord would draw their hearts, and that He would be real to them. That it wouldn’t just be stories we hear, verses we memorize, church services we attend, but that they would truly have encounters with the living God. I know God has already intervened in Belle’s life, though she is too young to understand. I hope she does some day. It’s my responsibility to teach my babies truth, but God’s job to draw them to a personal relationship with Him. I pray they do and experience the greatest joy life has to offer.
A HEART of GRATITUDE
“I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.” Philippians 4:11-12
I have been taught Biblical truth all my life. I was saved at a young age, but the joy that comes from truly adopting a heart of gratitude is something I never understood until Belle was born, and it’s a joy I have never previously felt. I have written about it before so I won’t go in to great detail here. I will say that when you’ve experienced the darkest of the dark days, the good days, even the normal days, become more beautiful than you ever saw before. I’ll never forget the first time we drove down 28 to Pittsburgh after two months in the hospital that we weren’t going to Children’s. We were going shopping in Robinson. It was a brisk, sunny, winter day and I was beside myself giddy the entire way. My stomach had butterflies and I was just so, so thankful. I kept saying, “Praise you, Jesus. Thank you, Jesus” and Joey teased me about being so excited to go shopping. It wasn’t the shopping. It was knowing where we’d been, and recognizing what God had brought us through. It was the memories of the long days and stressful nights and seeing the beauty in driving down the same road with a new destination. For the first time, I truly felt what it was to have a heart of gratitude. I wasn’t just thankful for that one day, I was content, humbled, grateful for every moment, even the hard times because I knew they had brought me the gift of a new perspective, something that can’t be bought at the store or ordered online, or event taught with years of education. It HAD to come through heartache and I treasured it with all of my heart. Belle will have many hardships and Joey and I are very adamant about trying our best to show her the gifts in suffering rather than allowing her to feel sorry for herself. There is so much joy to be treasured when a person adopts a heart of gratitude.
AN UNWAVERING FAITH
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. 2 Corinthians 12:9-11
The storms will come, and when they do, if a person knows truth, has a personal relationship with God, and adopts a heart of gratitude, an unwavering faith is the “make or break” ingredient in finding lasting joy. I recently heard an interview with Philadelphia Eagle’s tight end and Super Bowl champ Zach Ertz. After hearing the truth for most of his life, he got saved only about a year ago. He said he found that he would experience these tremendous highs when football was going well for him, but then these earth shattering lows when it wasn’t. He noticed some of his teammates (who were serious about following Jesus) remained steadfast, level headed, “even kill” as he called it, and he wanted what they had. An unwavering faith means a person knows and expects hard times (which goes back to knowing the truth and that the Bible is very clear we will have hard times). But when he gets that diagnosis, or her husband walks out, or their child gets sick, or they can’t get pregnant, or a parent passes away; when all of these really heartbreaking things happen, they might be sad or even heartbroken, but there is a deeply rooted joy that no heart ache of this world can touch. Or as the Bible puts it, they may be be pressed, but they aren’t crushed. They may be struck down, but they aren’t destroyed. They feel persecuted, but they know they aren’t abandoned by their God. (2 Corinthians 4). I’m pretty upfront about my faith. What you hear is what you see is what you get. As I’ve talked about it with other Mom’s of children with life threatening medical conditions, I’ve heard time and time again, “I use to have faith, but I don’t want to believe in a God who would let this happen to my child.” Why God allows “bad” things to happen is another blog for another day, but the point here is that a person who takes that stance has let her circumstance crush and destroy her. The key to “even if” joy is a faith that isn’t destroyed by the hardships of this life. They WILL come. They WILL hurt. But they DON’T have to steal our joy.
It’s ironic to me of all 170k+ words in the English language, God would give Belle the word “happy” as the first word out of her mouth. Truly, she is the happiest little girl you can imagine. With that said, she has a lot of challenges ahead of her. Joey and I have a big job over the next so many years of her life. Amidst her adversity, we have to teach her Biblical truth, pray Jesus draws her to a personal relationship with Him, cultivate an attitude of gratitude, and then, it’s my most sincere prayer that an unwavering faith will develop within her a deeply rooted spirit of joy, one that will sustain her on those days when it’s harder for her to find her “appy.”