As I reflect on this past week, I'm realizing that the roller coaster of feelings I experienced throughout the week are a perfect demonstration of the ways in which we have experienced grief and gratitude in tandem on this journey through medically complex parenthood.
On Monday I woke up anxious about an appointment for Marsaili only to receive a phone call an hour later that they needed to reschedule our appointment, which will delay a surgery that we have already had to move.
On Tuesday we celebrated a day of great seizure control and her lungs sounded clear for the first time in weeks, and Liam and I enjoyed some much needed sunshine and outdoor adventures with close friends.
On Wednesday we battled multiple episodes of vomiting with her and Liam, our five year old struggled with schedule changes and sensory processing.
On Thursday, we visited more friends and snuggled their brand new baby for the first time.
On Friday, the internet was out for the entire neighborhood. That's all I have to say about that.
Part of my healing journey as the mom of a child who is not only medically complex but whose illness is classified as terminal has been allowing myself the space to feel all of these things. It is totally possible and perfectly natural to experience grief and gratitude (and their associated emotions) at once, appreciating what we have been given even as we grapple with the pain of losing what we may have expected or imagined. Allowing ourselves the space to navigate these feelings as they arise simultaneously can be freeing, but it can also be emotionally exhausting. It's just this constant roller coaster of joy, grief, anger, gratitude, frustration, celebration. And sometimes the whiplash is real.
What a blessing it is to feel something.
There's a state of grief that many people experience that can only be described as "numbness." I've lived there, and as exhausting as the whiplash can be from the conflicting feelings I've mentioned above, allowing myself the space to feel all of them openly and fully has actually been a catalyst for exploring joy in this journey. As we've walked this journey through medically complex parenthood, yes, we have experienced struggle, frustrations, fear, and fatigue, but we've discovered a new appreciation for beautiful moments and inspiring milestones no matter how big or small.
So not only are these things - grief and gratitude - experienced in tandem, but our grief has been a catalyst for our joy. As we grieve openly and honestly with God, His provision, comfort, and mercy inspire gratitude within us. This gratitude inspires a life of worship because He is so good and so worthy. This life of worship allows us to see and experience the struggles while also seeing the sanctification that is occurring and the beauty that is persisting through the pain. By the grace of God and God alone, joy is being cultivated in this journey.