I have a confession to make.
And, before you read any further, here’s a fair warning. This isn’t an all-is-well, find the silver lining kind of post. This is more of a raw, venting kind of post. And I don’t write it for sympathy and I don’t write it to be told that my faith needs to be stronger or that I need to trust more or that I need to count my blessings. I know these things. I write this to be real, and to process through my emotions that are running rampant these days.
So, all of that being said, here’s my big confession: I am not strong. I hear it all the time. People hear our story or follow our journey and will comment on my strength and on our faith, but the truth is, I am a weak human being with sinful tendencies and doubts and fears that happens to serve a mighty, faithful God who loves me in spite of myself. For that, I am thankful. I can’t imagine the sludge I would be in without His grace.
I’ve been in somewhat of a silent struggle for some time now with this journey we’re on. Harper is tough and strong and healthy. At first glance she appears to be totally normal four-year-old. But behind the scenes we are pumping her full of medications, watching her sleep at night, worrying too much over every bump or fall. She goes to church and school and makes it through her hours in public settings, but at home we deal with the repercussions of those outings. We are constantly learning what she can and cannot handle, and learning her cues for when she’s had enough. We rub and squeeze and brush, we do exercises and hold her and face the critical stares in public when people think we are babying her too much. We face hard-to-make decisions, from outings to schooling to how much testing do we allow… do we consider surgery, do we prepare for the worst, or do we wait and see? We juggle doctors and therapists and testing and document seizures and fill out paperwork and it seems never-ending.
And, every so often, I reach the end of my rope. And I laugh at the thought of anyone thinking I am strong, when in fact I am a weeping puddle of emotions on the floor. The fear of the what-ifs, the guilt of the wondering what I missed or did wrong in my pregnancy, the worrying over if I’m doing enough now… and then the guilt over the fear and wondering and worrying, because my trust should be fully in God. It can be a vicious cycle, and a painful one at that.
Today I found myself sobbing in the Walmart parking lot, trying to pull it together to go in and buy groceries without looking like a total crazy person (which, by the way, I’m not sure I pulled off!). We had some communications with Johns Hopkins today, trying to make decisions about going up there for further testing- the neuropsych testing isn’t too invasive, so it’s not a tough decision, but the EEG study terrifies me. When we had that done at Duke, Harper ended up in ICU. They knew what to expect, they had IV lines in place and a plan, and it still resulted in a critical situation. My mama heart is reluctant to go through that again.
The doctor at Johns Hopkins also received all of Harper’s MRI images and reviewed them and wrote a report of the findings that was much more detailed that anything we have received from Duke. It broke me. The multiple diagnoses, the big words that hold an awful prognosis, the number of cysts in her brain… it’s so much. I look at my miracle child who is learning and growing and playing and coloring, who loves me so hard and whom I love so much, and I cannot fathom all of these things that are happening in her brain. It makes no sense.
And perhaps where nothing makes sense is where we see God most. I feel angry that my baby has so much to overcome. I feel sad over the what-ifs. I feel terrified of the fact that any one of these crazy things she has could take her from us at any given time. All of these heavy emotions and feelings are far from strong, and that’s okay- God never said we wouldn’t experience pain and heartache. He created us, emotions and all, and in our weakness He is strong.
And He created my daughter… the one that was never expected to make it this far. She has already far exceeded worldly expectations. And, as my husband pointed out, the truth is that not one of us is guaranteed tomorrow. And God has already used her mightily in so many ways… isn’t that what we want of our lives and the lives of our children? To be used by God? That is our ultimate goal in this insane life.
So, at the end of this very long, wearisome day, my strength is zapped, my mind is tired, my heart is aching, and my faith feels like it’s been battling a war. I share all of this to show that, hey, we’re all human. We all have our low points and our bad days and our rainy seasons. And that’s okay. God doesn’t demand our perfection to come to Him.
And, knowing that we’re all imperfect and we all have our struggles, let’s be easier on the other humans we see along the way. Share a smile, offer a hug, forgive more freely, give grace – you never know what battles someone else is fighting.