I never thought I would be learning the best ways to make Velcro adhere to plastic so that my kiddo could simply pull-to-stand or take a step. I never envisioned that my precious-one would need braces 24/7 to protect her little ankles so they do not bend in ways that should never be humanly possible. Or that my little princess would require protective shields to protect her delicate skin from injury like tearing, blistering, or worse — infection.
A few weeks ago Rhema’s AFOs, a.k.a. “helper shoes”, needed some major work. One helper-shoe had lost it’s toe pad and both helper-shoes were missing Velcro. Missing Velcro means that the all-important middle strap will not hold. As I sat there working with a very hot blow-dyer and super glue I began reflect on the implications of this task. My precious Rhema cannot run in the green grass barefooted and cannot wear those cute little sandals I saw in the store days ago. No, Rhema is confined to these hard, plastic sheathes over which most shoes will not fit. She cannot wear the cute, patterned socks of Spring; her choices are limited to white, grey, light pink, light purple, navy and black. These are her only choices of socks that “wick away sweat” and “hug a child’s feet and legs as to not cause sores on their delicate skin.” The more I wrestled with the glue and Velcro the more upset I became. Yes, there are even moments when I, a-Faith-filled-daugher-of-the-Most-High-God, gets sad and down. When it comes to my girl, my heart aches at what I know she is missing. Plus what she could potentially miss out on in the future — Shoe shopping with her friends comes to mind, also wearing high heels and having the experience of falling over in them. LOL!
Recently a friend posted on Facebook about having a similar day of being upset over what her daughter experiences as a special need’s child. As I read her post my heart echoed SO MUCH of her cry. Many days it seems like I’m riding a yo-yo, I have moments where I’m soaring outward, taking positive ground only to be jerked back into the battles that do not cease when one has a child with special needs. Whether it’s repairing Velcro on your child’s AFOs, or like my friend who battles her child’s constant seizures, it’s the simple things that can trigger the mental and emotional battles, many times invisible on the surface.
So, I take this moment, to hopefully help out a fellow momma who may be on this same journey, We ALL have moments when we feel we are not equip to handle all this…..We ALL have moments where we get down….and We ALL have moments of grief for our child’s struggles….. WE ALL feel sad at the thought of what “might have been” our reality and our child’s reality….
Here is what I am learning to cultivate in my inward parts….
When sadness and despair come knocking on the door of my heart, or when fear attempts to grip me and I can sense that I am about to cross that line from Faith to fear, here is my combat strategy: I realize that I cannot do this. Yes, you read that right– I. Cannot. Do. This. My precious Heavenly Father has given me stewardship over Rhema’s life and I cannot do it. In me I do not have the strength, wisdom, nor resources to be a good steward of a child who has special needs. When I realized THAT FACE, the self-imposed pressure to be “super mom” fizzled. I am free of all the pressure, guilt and worry. How, you say? I realized that, just like my salvation, there was nothing I could do in my own effort that would every be good enough. And just like the Answer for salvation is always Jesus, this impossible assignment, this Kobayashi Maru (for you Star Trek fans), can only be successful with Jesus. Only with Jesus and by Jesus would I ever be able to handle all this and be the Momma Rhema needs. I as her momma , have to lay hold of the peace, wisdom and discernment that Jesus has already provided. I as her momma, must rally to King Jesus when I’m in the thick of battle on behalf my child.
You know that scene in the “Lord of the Rings: Return of the King” when Aragorn rally’s his troop, “Sons of Gondor! Of Rohan! My brothers. I see in your eyes the same fear that would take the heart of me. A day may come when the courage of Men fails, when we forsake our friends and break all bonds of fellowship, but it is not this day. An hour of wolves and shattered shields when the Age of Men comes crashing down, but it is not this day! This day we fight! By all that you hold dear on this good earth, I bid you stand, Men of the West!” I’m a very visual person so, in my head I see My King Jesus on that horse encouraging me to look to Him when I’m face to face with all the heart-ache, the fears, and challenges that are riddled on this path. I visualize Jesus saying, “My child! Little momma of Rhema! I see in your eyes the same fear that tried, without success, to take the heart of me while I was walking in your shoes over 2000 years ago! A day may come when you try in your own strength, and fail, when your friends and family fail you too. But on that day I will not fail you! An hour in the night when you feel all alone and you feel life crashing down around you, I will be there with you! Always, everyday, alongside you, fighting this good fight! Hold fast to all you know of Who I Am and what I’ve done for you, and stand dearest momma of Rhema! Stand, be still and see the goodness of your God!”
Now this may be a tad dramatic for some of you, but my fellow mommas-in-arms know what it is to fight the battles internally and externally on behalf of our children. Remembering to look to “where my help comes from” is my secret weapon. Remembering to look to Jesus and rest in Jesus, is how moment-by-moment I stand. I pray that by offering this glimpse into our journey, brings encouragement to you on your own journey. Whether one has a child with special needs or has all typical children, all moms work very hard to ensure our children have all the best there is to offer in life. I am blessed beyond measure to have been entrusted with Rhema and in Jesus, I will “fight the good fight of faith” and will “smote my enemies ruin upon the mountainside…” LOL! Had to get that last “Lord of the Rings” reference in. LOL! Okay, one more… “To the King!” LOL! Okay, now I’m done….