5.23 - Six Months with Dottie Girl

This is not a sunshine and rainbows, six months, “Yay, Half Birthday!” post that people usually expect to see on social media platforms. This is an honest, vulnerable, “this is what our life is really like” post. One that I’ve been wanting to make for a while, and just didn’t have the courage to. But I need to get it out. I can’t keep holding it in. So, bear with me. This is my perspective on life with Dottie girl …

For six months, my body has felt like it’s in “fight or flight” mode most of the time. Like it’s ready to fight for my girl while fighting against every emotion that I’m feeling, or it’s ready to fly into action at the slightest inkling of something seeming “off”. A different definition of “fight or flight” than what you usually hear, for sure, but that’s mine. And I’ll be honest, most days I want to truly fly away, find a quiet room away from everyone, lock myself in, and barricade the door. Because I’m tired. So very tired. And I’m not okay. This is beyond hard. Even when I’m sleeping, I don’t feel like I’m truly resting. Quite often, when I finally lay down at the end of the day, that’s when it all comes rushing in. All of the emotions, all of the anxiety, all of the wishing and hoping for it to be different. I think about what was, what is, and what could have been, and my heart ends up aching, my head ends up pounding, and every muscle in my body ends up so tense it hurts, while tears stream down my face. 

I see happy, healthy baby girls and my heart is instantly in my throat and I have to look away. I can’t stop the immediate wave of grief. I want to be happy for those mamas, but it hurts to see what I prayed so hard for in someone else’s arms. These are the images that haunt me at night when I’m already struggling to sleep. These are the ones that creep in when Dottie is finally sleeping peacefully in my arms after an episode of seizures and spasms. What could have been. What I prayed for. 

We made it to six months … only by the grace of God. But sometimes, a lot of times … most of the time, I wish God’s grace looked different. I wish my prayers had been answered differently. I wonder, “why me? Why us? Why her?”. And after everything that we’ve already been through, “what’s coming next, and when?” I feel like I’m on a plane going down and I’m bracing for impact. We’re fighting a lot of battles, knowing full well how unlikely it is that we’ll win the war. 

But still … I fight through each day with every fiber of my being. I fight to stay present and positive, I fight to stay strong and unshaken, I fight to breathe and just keep moving … through things that no mother should ever have to fight through. And some days I feel like I have absolutely no fight left in me, and I wish I could fly away. But … I measure the meds, give the injections, move the pulse ox back and forth from foot to foot, track the seizures and spasms, monitor and document the growth of the tumor in her nose, manage the nurse visits, doctor’s appointments, and medication refills and deliveries, call the insurance companies to fight for coverage … and I keep going, because what else can I do? And there’s Charlie, too … with all of his four year old needs that are just as important as Dottie’s. So I keep going. 

We did not choose this life, but for some reason, this is the one that God chose for us. It’s heavy and painful … exhausting and terrifying … filled with sleepless nights listening for seizures and spasms and oxygen alarms, and little footsteps in the hallway. But … somehow … it’s also joyful and beautiful … rewarding and significant … a blessing. Because six months ago in that labor and delivery room, we didn’t know if we’d be here. We didn’t know if our Dottie girl would live to see six months. And here we are, celebrating a milestone. A hard fought for celebration for a life that in six months has had more impact than mine has had in 36 years. And for that, to God be all the glory. 

So, Lord … this is hard. So incredibly, terribly hard. But we are grateful for these six months despite their traumas and trials. If it be Your will, let our girl have six more. Continue to give us a strength that can only come from You, a peace that surpasses all understanding, and let us find joy in the little things, while we fight these battles for our girl. Give her strength and comfort and as little pain as possible. And help her to know the depth of our love for her. Lord, thank You for the blessing that is our Dottie girl. Thank you that we’re never alone in any of this. Thank You for bringing our family, all of us, this far together. Thank You, Lord, for six months. 

This is my hard fought … Hallelujah.