Last year my Mom made metal stamped bracelets as a fundraiser for smashSMARD and she made me one that says hope over fear. Pretty timely message, but easier said than done, right?
I’ve been thinking about a post for a few weeks now and I was sure I would write about COVID-19, being quarantined, and all the different ways I’ve seen people impacted, from my brother planning a summer wedding to pregnant friends who must go to appointments (and even birthing) alone. Our community of medically fragile families is doing what we always do, avoiding contact with people. We have friends and family who have had to shut down businesses, unsure of whether they will be able to pay their bills. It becomes even more real when friends have a family member on a ventilator, because we know that pain. There is uncertainty all around us.
Instead of giving more time to this virus, I first want to talk about Brooks. He is doing great. As always, he is a happy guy who loves watching Disney Cars and playing with his toys. He enjoys bath time and being entertained by his silly sister. He is healthy and thriving and we pray he stays that way.
As for the SMARD research at Nationwide, it is currently at a point where it can continue despite various closures due to COVID-19. Unfortunately, if this crisis continues, the research will be affected and the timeline for treatment will be postponed. So, keep doing what you can to avoid people and stop the spread of the virus. Pray for research to be unaffected, for sufficient funding, and for the first patient to be treated THIS YEAR. The sooner, the better for these SMARD kiddos.
Now back to hope over fear being easier said than done. I think on social media and my blog posts, people see us as strong and full of faith. I think it’s important for everyone to know that is not my everyday reality. We make it a point to live in truth, spending time with God, reading His Word, but still fear and doubt creep in uninvited. Sometimes I feel sorry for myself and how “hard” things are for our family. In my head, I know hard is relative (see my post on perspective), but it doesn’t change the feeling of self-pity.
Bitterness can creep in at the strangest times. I love giving Brooks a bath because he plays and laughs the whole time. It is probably his happiest time of the day, but yesterday I cried. I cried because he lays there on a squishy pillow because he can’t sit up. He loves when I pour water on his hands but I have to turn his head to see it. He uses so much effort to splash and kick for 20-30 minutes that he is soundly asleep shortly after we get him dressed and situated in bed. I cried because his life (and mine) will never fully look how I had planned. But as I am crying, he looks at me confused and smiling, because he doesn’t know any other life and he loves the one he has. This is where the guilt starts and I cry even harder.
Sometimes we wait for God’s miracles, like gene therapy, and we fail to recognize the miracle we are living. Brooks is a miracle. The people and machines that keep him alive are God-sent. Cam reminds me how God has provided for us and will continue to protect him. One of the bible verses we put in his room before he was born is Jeremiah 29:11. “For I know the plans I have for you declares the Lord. Plans to prosper you and not to harm you, plans to give you hope and a future.” Fear still persists and asks, what would I do without him, or maybe worse, what would he do without me or Cam?
Maybe it’s just me, but there are times when it feels like happiness is rationed, and if someone else is happy, that takes away from my cup. In reality, there is no limit on happiness in this world. A “grass is greener” mentality can only breed jealousy and anger. Sharing others’ joy, however, will spread happiness and love. Though I would like to be, I am not in control. It is ok to have fear, but I do not need to live in fear and bitterness. God may not change our circumstances, but he can change the way we see it. I pray God will open my eyes to see there is more for me than against me. I can let the trials in life block out my blessings or I can recognize we have more reasons to be grateful than to be fearful.
God’s job is tomorrow. Our job is today. Choose hope over fear.
If you appreciate these thoughts, you should check out the Elevation Church App or Northeast Christian Church here in Louisville. They fill our hearts with positive messages weekly.