So it seems official, Monday we should start our first round of chemo. Jonah's second blood clot surgery set us back a few days, but surprisingly not that many. The plan right now is to transfer to the oncology floor on Sunday to secure a bed. Monday morning we'll do a quick MRI (MR Vent actually) to make sure that the ventricle sizes remain appropriate and then chemo will begin.
Last night I was reading the drug sheets for the drugs we'll be using in chemo. Everyone knows that chemo is tough. We've all known someone who's known someone or seen it portrayed on TV. Reading the very real side effects that we're about to inflict on Jonah is crushing. I know that treatment is his only chance, but it is not without a high cost.
Right before the first surgery, Jonah told me that mummy's are always brave. How I wish that were true. I don't feel very brave right now. It's heartbreaking a million times a day to see my little boy like this. The Jonah I know is a big liver of life and a big lover. He has more questions than there could ever be answers to, he is adventurous and determined, he loves people, is quick to smile and laugh and is always ready for a snuggle. He specializes is squeezes so big you think your head may pop off. He is creative and silly, interested in cooking and loves to be read to. I could go on and on about the Jonah that I know and love with all of my heart. Right now it's hard to see that Jonah, as he remains in this land in-between. His eyes are open, but it's almost impossible to tell what's going on inside, how much of Jonah is still Jonah.
Amidst all the sadness, we see the fingerprint of God everywhere. There are countless stories that we have been part of that make us say "Only God" (to borrow an expression from Bill). We draw encouragement from those stories knowing that if God cares enough to be in the small details, He is not making us walk this alone. That is actually very evident in the support of our community which has been overwhelming. We feel well loved, and that carries us through some of those low moments.
Joshua 1:9 says "Be strong and courageous, do not be discouraged for the Lord your God is with you wherever you go. " I may not be able to be the brave mummy that Jonah suspects I am, but I pray that because God is with me I can be strong and courageous on this journey.
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I love you Stephanie, as do so many! I will be praying Joshua 1:9 over you and Jonah all day Monday & Tuesday. God has you covered. He IS carrying you. He WILL supply all that you need. He IS your strength in weakness, & He will continue to be. So take courage. God has overcome. You are all deeply loved.
ReplyDeleteI hear you friend. I, too, will be praying Joshua 1:9 over you and your family. I love hearing you tell of God's great handiwork when you described Jonah. He is one of God's great masterpieces. May you feel God's presence and peace envelop you especially the next few days.
ReplyDeleteThere's a quote that circulates social media about bravery-something to the effect of "Being brave doesn't mean you have no fear, it means doing something inspite if it". Being brave for Jonah is what you're doing. You're making the hard choices for him. Doing what will have the best outcome for him, even though it has a list of side effects a mile long. You are bravely moving forward in love, leaning on God to fill your gaps. You are brave for sharing this journey with so many people thru your blog. It's not easy to write it down but here it is, so we can be with you in the journey. I'm praying that all your decisions about Jonah's care are guided by Gods wisdom and skilled hands. And that you will have your vivacious head-popping hugger back in your arms.
ReplyDeleteDespite what you sometimes feel, Stephanie (and Simon), your bravery clearly shines through. Know that all around the globe, people are thinking about you and hoping for the very best. Keep leaning on your family and friends, and keep being brave. Remember, Mummy's always are!!
ReplyDeleteAll the best!!
The Schumanns
Steph,
ReplyDeleteTears filled my eyes as I read your last few posts and learned of Jonah's diagnosis and surgeries. I work in an adult neuroICU and can imagine from my experience as a neuro nurse what the last few weeks have been like for you. And as a mom who has handed her daughter over for surgery I can imagine how you don't feel strong enough. But I'm sure the storm rages more forcefully inside yourself than is visible from the outside. I pray that God gives you supernatural, overwhelming peace, and confidence in Him. I can remember sitting in Jillian's hospital room and feeling tremendously at peace and knowing it was only from God. May you feel peace today and in the days to come.
This morning our sermon was about prayer, and the joy of praying for "all the saints." We sang the hymn "Come My Soul, thy Suit Prepare." and I love the first verse for you: (to the tune of Take My Life and Let it Be.)
Come, my soul, thy suit prepare;
Jesus loves to answer prayer;
He himself has bid thee pray,
therefore will not say thee nay;
therefore will not say thee nay.
May courage and peace from God's Holy Spirit fill you today. I'll be praying in Philly,
Heather Gregg