So often I have found myself get caught up in the little things, the annoying things that disrupt the normal flow, I guess, truth be told the flow that I THINK should be a certain way. Life has not gone the way that any of us would have liked, many things have had to be let go of, cancelled, adapted and required loads of flexibility from the rigid Harneys. Our lives work on a synchronized rhythm. I a rhythm I created when they began to outnumber me.
This weekend has proven that when we get off our rhythm, the controlling nature that many of the Harneys’ posses is challenged. We are stuck with the glaring reality that things are no longer going according to our well maneuvered plans to maintain structure and instead succumbing to utter chaos.
As I was thinking about my first born, knowing that this day was coming, accepting two days ago that it would be another thing that would be sacrificed while we faced Ezzy’s decline in health yet again, I felt sad. I went down the train of empathy and then moved to sympathy. I told God it wasn’t fair. I wanted today to be about him. I wanted today to be filled with our family’s tradition of numbered pancakes matching their new age, watching them all huddle around him and open the gifts they hand picked just for him, experiencing sighs of relief when he gave the ok to the clothes we picked out, now that he is so particular about them, I wanted to sing happy birthday to him as he blew his 11 candles, I wanted to hear the prayer that would come from his father’s heart and mouth, a prayer of blessing that he gives each growing Harney.
Before long, I was met with such a firm voice, one that comes from a loving parent when they are trying to help their child reframe the current hard situation they are facing. I was told from my Abba Father “11 yrs ago, when he drew his first breaths, I knew 11 yrs later on this day he would be facing this”.
You see, when he realized his sister didn’t come home from the ER that life was going to change. He quietly and in passing said “I am not having my party this weekend, am I?”. It didn’t take a lot of explaining, he knew his sister was critical. He ran after my car as we were pulling away to head to the ER, fighting tears and telling her he loved her, even though his friends were all standing nearby.
When he woke this morning, he had a cloud over his head. I asked him, “can I make you your pancakes” (something daddy usually does). His response came with tears in his eyes, “what’s the point, everyone isn’t here”. I reminded him that he still had 4 women who would love to celebrate him and he finally allowed me to do the honors of helping him ring in year 11.
Shortly after we received word his sister’s NG tube fell out and that she would have to go through it again, a hard slam of his dish hit the counter, met with furry that overtook his little body that is housing such an old soul. He let it known that he was about to go and have a talk with the hospital staff. He was going to tell them his sister has had it, tears came down his face, he said “it’s not fair!”.
It was then that I realized in a whole new way what this is doing to his soul.
How it is shaping the very fabric of his character.
11 yrs ago when he drew his first breath, God knew 11 yrs later he would be facing this.
Thanks to the upcoming half marathon in May, Cayden and I are in training season, which is forcing us to run even when we don’t want to, because our emotional fatigue is now claiming our bodies. Thanks to Ezzy’s hospitalizations and my travel for school/work, its even harder. But today we went and pushed our bodies and attempted to free our hearts and minds of the different perspectives we are carrying as we navigate this world of being Ezzy’s support crew.
I held him closely, before our run and prayed with him. Something I do every run we have. I prayed the blessing over him that I knew he wouldn’t have over his birthday dinner, because his sister can’t eat and specifically asked that we didn’t bring food tonight during her visit. I asked God to give him a vision of the things he wants him to do. I asked God to speak clearly to him and tell him all the good things he sees in him. I thanked him for the caretaker that he is to his sisters, mom, and nana.
While running and coming to a corner that is questionable to our safety, he squeezed words out in between the breaths that were working overtime while we pushed our selves through our pain. “mom, I always pray for us when we turn that corner”.
I was caught off guard.
I took sometime to digest his words. I let them sink in. When a scary situation comes his way, he doesn’t run down the “what if trail”, like me, but instead he prays.
After my head caught up with my heart, I told him I was so thankful that he was covering us in prayer, I admitted to him that I am always so focused on watching for the cars that I don’t even think to pray. I again, thanked him for covering us in prayer.
I have to believe that everything that he is facing and has faced is shaping him into a man of prayer.
He has had plenty of opportunities to be angry with God, angry that his life many times lives in the shadow of his sister, angry that MANY things have been taken from him due to CF, angry that his parents have been tapped out more times then I want to admit the last 6 months with the ebb and flow of Ezzy’s healthy.
When faced with fear.
I know one day when you read these blogs you might be upset with me, for being too honest, for being too vulnerable. I will never forget the day when you told me you googled your name at school that a ton of blog posts came up with pictures. I truly hope that when you stumble upon these, that you will see how much we love you, how much you are the steady rhythm of my heart, that you have a space larger then you can fathom in my soul. I am placing my trust in God over your story, over the call that God has given you to defend the weak, to fight for injustice, to cry for those who are hurt. I hope those parts of your soul never change, I hope that God keeps using the brokenness of this world and makes you one of the most powerful threats to the kingdom of darkness because of your boldness to surrender to your King Jesus.
Thank you for loving me, thank you for waking every day and asking “mom, what do you need me to do?”. Thank you for always looking for ways to serve me before I have a chance to ask for help. Thank you for loving the babies and tucking them into bed on the night’s daddy can’t. Thank you for giving up your bed each night Ezzy is away to comfort the heartbroken Kyre so she doesn’t have to sleep alone. Thank you for trying to run the house and keep it in Mom’s OCD standard even when I am away and can’t appreciate it. Thank you for finding ways to let Ezzy know that she is your priority, that nothing matters more then her, even if it costs you your street cred with the neighborhood boys or not making a big deal out of the tube hanging out of her nose, only to fight tears after seeing it.
William Cayden Harney, may God always be your source of strength, may He always prove himself faithful as you face hard things. You were created for so much more, he is going to entrust you with more then you can even imagine, this I know.
You know the way. God first and you will change the world. And I get the best seat in the house as your story unfolds.
Happy birthday, my one and only son