In a boat in the middle of a lake…
Fall time pushes us into a season of gratitude with holidays like Thanksgiving and Christmas... though I know we really should be thankful year round, day round, every hour...this season in particular brings about reflecting on gratitude.
If I’m honest my emotions have been up and down.. I cry a lot out of nowhere these days...( I blame the hormones still ;) and the trauma of what we’ve been through) it’s easy to let your mind go to hard places... but Andrew reminds me all the wonderful things we have to be grateful for and celebrate now. It’s easy to focus on what we don’t have or don’t think we’ll have in the future. I sometimes get sad thinking about “normal things” Rory may not have...it’s so silly, like the other day I heard a song that made me think about our marriage and love story and I began to weep..thinking “Rory may never have an opportunity to know love like Andrew and I have” and I grieved...but the truth is we don’t know that... we know what they tell us is likely for her future capability wise but it’s not yet written. So we continue to pray and fight for her..and even if everything they say is true... that’s ok too...b/c she will have our love, her families love and most importantly the heavenly fathers love. The greatest love of all. I’m reminded to focus on all the good we have and not what we don’t have or think we may never have. Because life may actually be sweeter without those things anyway..God has a good plan for Rory and her story as he does for each of us. We all really do have so much to be grateful for. Practicing gratitude brings life and joy.
On that note....How’s our girl doing? She finally hit 7 lbs! Woohoo! Weight gain is still slow but she’s gaining. Still not really taking a bottle... so not getting that mct oil formula they want her to get but she’s gaining so we’ll take it. Rorys liver enzymes went down, though still enlarged, they appear to be going in the right direction. The new update for prayer is her white blood count is very low, the antivirals to fight the infection work against her WBC ...so prayers for her WBC and for health as she’s high risk for infection with low WBC. Thus all the more importance for us to be so cautious with her health and exposure. Keeping it low key and other than doctor visits little girl mostly stays home. The season for outings and adventures and meeting loved ones will come one day (for all of us in this quarantine life we are living) but for now we enjoy home and family time. Which excited to share some family photos we recently got to remember this time with our itty bitty warrior and celebrate her life and our family of 4. Thanks to our friend Caleb for capturing these great shots for our family!
I’ll end with sharing a word that encouraged me from the morning devotional I’m currently reading about trusting God in the storms ....
“Trust is not giving up; trust is opening up. Opening our hearts to the possibility that maybe God really does know best. Maybe his wisdom and care and love are what we need most. And so, reluctantly at first, we open our hearts to trust in the middle of what we don’t always like or understand. But we open our hearts to a Father who has our best interests in mind, even if we can’t fully comprehend it. . . .The struggle to trust and obey is real. But it’s also a necessary step toward growth and transformation. Learning to trust God with what we don’t know is essential for being filled with God. If we are to increasingly experience the good life of following Jesus, we have to learn to trust like he did, often with what we can’t see or get our minds around.” - from the Bible app devotional..’In a boat in the middle of a lake: trusting the God who meets us in our storm’
