Last week as I sat in the hospital with Fulton during his four-hour observation window, I tried, between the nurse interruptions and (mis)alarming equipment, to hash out a Quick Takes post. By the time we left that night and got home I was too spent to reread and edit it into something coherent, thus the week off. Imagine my delight when I opened the post this week and discovered it wasn’t quite as awful as I remembered.
The boys are doing well post-Spinraza. Teddy had some headaches related to the lumbar puncture and Fulton threw up once related to the anesthesia, but since Sunday it’s been business as usual. This week we tried to squeeze in probably too many last-minute summer day trips before the demands of a brick and mortar school schedule will make these things impossible for Fulton and Teddy.
I’ve oriented various nurses, tried to convince Fulton to ask said nurses (rather than me or grandma) for help, and generally scrambled to figure out what my responsibilities are when responding to every little request is no longer required. Amazingly enough, housework is still not a top priority.
So anyway, thank you again for your prayers and support. The next Spinraza injection will be Thursday, Sept. 7th. I had trouble uploading to Instagram from the hospital so Facebook is the best place to follow me if you want updates. Next newsletter will be coming out soon too, so sign up if you’re interested. It’s the month of the Seven Sorrows of Mary, a very special devotion of mine, and I’ll be sharing how Our Lady under that title has brought me innumerable blessings over the years. Now onto last weeks ramblings of thankfulness…
I’ve written previously about what to do when God doesn’t answer a prayer, or how God often answers prayer in unexpected, and better, ways but, as I sit here pondering all the good things that have happened in the last couple week I realized how I don’t know if I’ve ever read how to thank God when He gives you what you want, and some.
And right now I am thankful for so much. Medical advancements do not happen overnight. Fulton and Teddy receiving Spinraza was the culmination of years of effort by doctors, researchers, SMA families, financial donors, other medical specialists (in imaging, nursing, etc) plus the pulling of knowledge from decades of study in fields like genetics and neuromuscular disease. And we are the direct beneficiaries of it. It is never lost on me that 50 years ago Fulton would probably already be dead and Teddy would be weaker, sicker and mostly homebound.
Thousands upon thousands of people have prayed for a cure or treatment for SMA for decades. On Thursday (the day I’m writing this), my prayer was answered. After wondering so many times why God’s plan and my plan never seemed to be in sync, yesterday they were. I can personally thank the people we interact with through the process , but how can I thank God enough for everything that has led to this moment, one that so many other children could not live to see? A few quick thoughts as I sit here in Fulton’s recovery room listening to him breath and the monitors beep in rhythm with his heart.
I guess first off, we start with prayer. But instead of asking for something or wondering why, it’s only to say thank you. Rosaries, novenas, hours in adoration, Masses said: all in thanksgiving. As parents, we know what it’s like when our kids constantly ask us for stuff while seemingly never noticing or caring about what we just gave them, yet how often do we maintain a prayer life that is simply a spiritual ‘Wish List’? I know that I will continue to ask my heavenly father for things, but for right now, I’m trying to be thankful for these great blessings and let him know how much I appreciate them, knowing full well I’m nothing special and don’t deserve them because of any special qualities I possess. Which leads me to my next point:
Why do my children get this life extending treatment, and such superb medical care? Why has God allowed so many other children to die before the discovery of Spinraza? I don’t know, and probably won’t until, God willing, I reach the pearly gates. But I am certain it’s not because I deserve it. There is nothing special I’ve prayed or done in my life that warrants preferential treatment. I in no way get to take this gift as a sign that I’m somehow holier or better than any other human on the face of the earth. Blessings don’t erase sins. Spinraza for Fulton and Teddy isn’t proof we’re a morally superior family vs one that has lost a child to SMA. Bad things happen to good people, but lucky for us, good things happen to sinners too. If anything I feel more responsible to show gratitude and humility, and live my faith more fully to make up for this overabundance; much like the prodigal son returning home to a feast.
Now I want to share this gift, this answered prayer with everyone. I don’t want to keep this great blessing just in the family. I want to take this joy and hope and love and give it to everyone I meet however I can. God is so good even when it feel like He hasn’t been listening to you for a long time. I wish I could lay out His timeline for you, but instead I can reassure you of His presence in your life and I can do whatever I can to help you carry your cross. And not with clichés or empty assurances, but by recognizing and using the time, money and talents I’ve been blessed with.
Look around? What do you have to be thankful for? Share it! Recognize what you do have, rather than focusing on what you do not, and spread the love.
What do you have to be thankful for today? How can you thank God and share those blessings with others? Leave a comment or write it down then link it up below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts.
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