We’ve had Shelby’s diagnosis for years. Dravet Syndrome. A rare and severe seizure disorder characterized by psychomotor developmental delay. The seizures are resistant to treatment and the mortality rate is much higher than in the general population. It’s pretty grim. It’s VERY tough. But it is our normal. It’s a part of who our girl is and she is “fearfully and wonderfully made”. As the challenges have morphed and changed over the years, so have we. There are sleepless nights, tears, confusion, and still after all these years – surprises. Through lots of prayer, the help of many experts, and counseling (for me) we have done our best to trust God with it and walk in His goodness. Some days my husband and I handle it with more grace than others, but God is holding us up every step we take.
But what happens when the next curve ball has nothing to do with Dravet? When Mama now has her own special needs? I have been diagnosed with non-invasive breast cancer. This isn’t something we were prepared for. It’s not a part of our “normal”. We’ve spent years learning about Dravet Syndrome. I don’t know how to deal with cancer. My sleep, so long now interrupted by Shelby, is suspended while my mind tries to reconcile caring for my daughter’s diagnosis and mine at the same time. I’ve been kind of private about it up until this point, but it occurs to me that the older our special needs children become, the more common this scenario will be. Unfortunately. So I decided to share my struggles publicly – praying that it will connect with someone. Hoping to bring a little comfort.
My cancer has been caught very early. That fact is a great relief to me. But I am still facing a 6 hour surgery and weeks of recovery. There are so many variables. So many decisions to make. So many appointments and tests. I can get overwhelmed just thinking about it. So how do I calm a chaotic mind and spirit? Where does my peace come from?
1. My husband is a rock. He does, however, have feelings of his own about all of this. I have had to remind him that he is allowed to. This is happening to both of us. He has moments of fear, sadness and stress, but he has a firm foundation of faith in Jesus Christ. He knows where our hope comes from, so he is able to be a strong, supportive caregiver to me AND our daughter. I really could not ask for a better partner.
2. I have other family members that step up. My parents are already on-call for whatever I need. To be at the hospital, to move in afterward and help take care of me and the kids, to wrap up some home improvement projects we have been working on – even if all I needed was a hug, they would drive the hour and a half to do it. That means the world. My twin sister has offered to get permission to work remotely so she can be at my house after the surgery and assist me and the kids. My younger sister is reminding me how much she loves me by bringing the humor. Perfectly timed jokes about me “nipping” this thing in the bud come at just the right time! My in-laws have worked tirelessly helping my husband with tools and paint brushes and are postponing a big trip to be available for whatever I might need. As long as I am willing to open myself up to help (that can be hard sometimes), I have no reason to worry that anyone or any detail will be neglected.
3. I have amazing friends. There have been times I have felt lonely for companionship in our fast-paced world where we are all so busy, but my girlfriends have shown up and shown out since discovering my news. Every day I receive multiple texts checking in on me, praying for me, speaking scripture over me, and offering their help. It means the world to me. And…I have that one friend. The one who never says no. The one who drops whatever she is doing and rearranges whatever she has to come to my aid. If it’s her job, it can wait. If it’s her kids, her husband can take care of it. If I have a need, she is here. And she lives around the corner. That’s invaluable. She has proven her faithfulness in much smaller things in the past and she is already going above and beyond in this. I hope she recognizes herself here, but her humility might blind her to it. So I better make sure she knows how much I appreciate her.
4. I saved the most important for last. My God who “will supply all [my] needs according to His riches in glory in Christ Jesus.” Phil 4:19 I can have a true soul-level peace because I know that it is all in God’s hands. “He is before all things, and in him all things hold together.” Col 1:17 I can see so many ways He is moving in this already. If you are curious about the details, I would love to share with you because I love to talk about my Savior. It wouldn’t be authentic of me if I didn’t say that I wish He had seen fit to spare me of this. I don’t understand the “why’s”, but God says in Isaiah 55:9 “For as the heavens are higher than the earth, so are My ways higher than your ways and my thoughts than your thoughts.” I don’t expect Him to reveal to me all He will accomplish through this, but I know His character. I know that He is with me. “The Lord your God is in your midst, a victorious warrior. He will exult over [me] with joy, He will be quiet in His love, He will rejoice over [me] with shouts of joy.” Zeph 3:17 I “have come to know and have believed the love which God has for us. God is love…” 1 John 4:16 and “if anyone loves God, he is known by Him.” 1 Cor 8:3. He loves me and knows me. He sees what I’m going through. He knows my fears, my needs and even my selfish wants. I can trust that “God causes all things to work together for good to those who love God, to those who are called according to His purpose.”