As I think over my life and what I have to offer others, my first thought is evidence of God's faithfulness. He has allowed me to see Him in the midst of a storm. He has given me a child with a life-threatening illness. He has given me a daughter with global delays. He has given me a daughter with intractable epilepsy. He has given me a daughter who is fed fluid through a tube. As I write that, I am overwhelmed by the thought...is that really true? Last night I met a neighbor/doctor who was asking me about Reese. I told her about some of her issues and her eyes got wide and she said, "Wow...she is complicated." Yes, I guess she is. When a doc says that, it is even more profound.
I don't feel sorry for myself because my daughter is disabled. I don't feel sorry for myself because I sacrifice much of my time caring for her--I actually love it. But the hard part is my walk from my bed to her crib every morning when I pray, "God, please let her be breathing." I know every mother does this with her newborn but this is different. I am grateful for every day I get to have with her because we have been told they could end at any time. That is the hard part...the rest of the "complicated" is just details. Imagining life without Reese is deeply painful and almost unbearable.
Having a child with disabilities does not bother me. Because I have found so much beauty, joy and depth in the sacrifice and the struggle. It is hard for people to understand because we cannot fully understand God. When we try to fit Him into our human understanding, we are fools. Our brains are finite, our understanding is finite and our life is finite. But God is infinite. I read a book called "Ruthless Trust" by Brennan Manning and he describes the word Kabod which is the Hebrew word (I think!) to describe God, meaning He is "other". He is not like us so we clearly cannot understand all of Him, all of His mysteries. This truth changed my life. When I beg Him to take certain things away and He doesn't, I later see how He uses them for good and I get a glimpse of Kabod. I get a glimpse of His eternal perspective.
Living with the realization that I may lose Reese in my lifetime has made Heaven so real and appealing to me. I used to look forward to Heaven, just not yet. Just let us to this or that before you come back, God. Why? I guess because I was loving my life more than I was loving Jesus. When I was first told that Reese would have a short life, the only thing--only thing that gave me any comfort was the thought of Jesus coming back soon. If only He would come back and save us, we would not have to endure that pain. He may...or He may not before our lives end. But the HOPE of His return and the HOPE of Heaven are my greatest hopes. My citizenship is in Heaven and what happens on earth is temporary. I love living with Heaven in mind and knowing that all of us who know and love Jesus, including Reese!, will be made PERFECT when we meet Him there. I picture Reese running, laughing, talking, dancing and I am overwhelmed.
In "The Power of the Powerless" the author describes his disabled brother as the "Angel" living with him. He would bring his friends over and ask, "Did you know we have an angel living with us?" I see my girls doing the same thing. They call their friends over, "Look! Reese is here!!" They are blessed by her and so proud of her. Why? My only explanation is God. His ways are unexplained but always the best.