As Mike and I were bathing the boys the other night, it dawned on us that Dominic has been seizure-free longer than he was seizing. It's so hard to believe because those eight months felt like years. Maybe that's because the seizing never stopped. It went on 24 hours a day so the days blurred into the nights and back into days. We seemed to spend more time in hospitals, doctor offices and labs than we did at home. We seemed to change or add medications every few days and while Dominic got physically older, he seemed to be slipping cognitively farther and father behind. Those were eight very dark months of my life that at times seem so long ago, but sometimes I wonder if I'm in a dream and I'm going to wake up back there. I'm reading a book right now called
I Will Carry You and it's about a woman who was told during her pregnancy that her baby would not survive. She continued with the pregnancy and got to spend two hours with her precious baby before she passed. It's an incredibly tragic, touching and beautifully written book. While she's upfront and honest about the pain, she continues to praise God for who He is and worship Him through everything. It brought me back to the darkest days of Dominic's illness and I remember that feeling. I remember needing Him to get me through the day. I remember needing Him just to get out of bed and face the reality of my situation. I remember grieving the loss of a "normal" and "healthy" child and begging God to heal him. I would cry to Him, face buried in my tear-soaked pillow, "Why are you doing this? Why are you allowing your child to suffer? Why won't you heal him?" As strange as it sounds, I miss those days. Not for the pain, anguish and worry. But because I had never felt closer to God. I spent so much of my time in prayer and His word. I
needed Him. Now, eight months since our nightmare has ended, I don't need Him the way I did then. I feel like I've finally gained control of my life again and I'm happy and enjoying every moment. Of course, this is a false sense of control because all things are ultimately in His hands. But I am able to do things I want to do again, go places I want to go and and am free to make decisions that don't revolve around Dominic's illness. It's funny though, when I have the freedom to do what I want, I don't choose to spend a lot of time with God. My first thought when I open my eyes in the morning isn't "God, be with me today. Give me strength. Be near". It's "why are my kids up so early? Is the coffee on? What time is that class at the gym?" Yes, of course I still pray. Yes, I am grateful every day for Dominic's healing and continued progress. Yes, I look into Dominic's deep blue, soulful eyes and thank God daily for what a miracle he is. But I miss that closeness with God. I miss that longing and desire that comes when we are at our most vulnerable. And I know God misses it too. That is what he wants of us, craves of us. In my daily devotional yesterday, I read "I meet you in the stillness of your soul. It is there that I seek a commune with you. A person who is open to My presence is exceedingly precious to me. I see you trying to find Me; our mutual search results in joyful fulfillment". When everything is taken from you, all you have left is God. And all you can do is cry out to Him for help. But when things are going great and your children are healthy, your husband gets promoted, your planning wonderful vacations and everything seems to be going according to (my) plan; God seems to get lost, or at least moved down lower on the list. He doesn't come first anymore. We pray and thank him for the blessings, take the reigns and then we move on our merry way.
All of these thoughts struck me when I started reading this book. Maybe because it brought back the flood of emotions those eight months brought that I have seemed to repress. But the way she writes touched me. She's real and honest and incredibly faithful. It has made me hungry for Him again. It scares me to say it out loud, because I'm afraid of what it will bring, but I want that dependence again. I want to be brought to my knees because I can't physically stand without Him. And yet I don't want to let go of control and leave this good place I'm in. I know inevitably the storms will come again. So I guess for now, all I can do is enjoy the sunshine, thank Him for this time of respite, and try with all my might to seek Him and draw closer to Him.
This ended up being a much longer and more emotional post than I had planned. I really just wanted to shout from the rooftops that Dominic has been seizure-free for 8 months! But then the words just sort of started pouring out of me and I couldn't stop my fingers from moving on the keyboard. That is one of the best things I have found about keeping a blog - it's great therapy to write down my thoughts and feelings. It helps me process, learn and move forward.
