Sometimes, raising a child with special needs, there is a constant undercurrent of stress that we don’t even recognize. It takes release of that stress for us to suddenly realize it was there. That’s what happened to me the other day. I hadn’t noticed how much pressure I was under until my daughter was gone.
I was half way through my morning shower when the light bulb went on. I don’t have to rush, I thought. I suddenly smiled realizing that our youngest was at a sleepover until at least noon. I could get myself ready for church without having to pop into our “alphabet soup” kid’s room 3 times, reminding her to eat breakfast and get dressed. I didn’t have to repeatedly refocus her attention, “Let me see you take yourpills now. Did you use your inhaler and nose spray yet?” I didn’t have to press her once again, “Did you brush your hair? Did you brush your teeth?” so we can get out the door on time. I breathed a sigh of relief.
It occurred to me that my nose is to the grindstone with such passion to help this child every.single.day that I don’t even stop to realize how difficult it is raising her. Without a full awareness of it, I must always be “on”. Yes, I collapse in the evening, wanting to escape the family after I have fought to get them all through the dinner hour, prompting her like a baby sparrow over and over again to eat. But I don’t spend all day with full consciousness of how I am perpetually at battle as a mother. If I did, I would likely never see the beauty in her quirkiness, her obsessive curiosity, her brilliance, and the style that is all her own, as we journey through life together.
And that’s where the guilt seeps in. A mom we serve in our ministry shares the poignant article with me, “Doctor tells expectant parents of baby with Down syndrome that they are a ‘lucky couple’”. I read it the same morning that I realize my daughter is gone, and it leaves me in tears. I am deeply touched at the reverent value ascribed to our unique children of every diagnosis. I realize how blessed I am to be the mother of this child. I have been entrusted as the one who goes before her declaring her worth to a brutal, critical world. I cry thinking of those who demean, kill, and devalue lives like hers.
What conflict! To love a child so fiercely, relentlessly advocating for her acceptance, and yet, feeling so utterly relieved when she is gone! How can I truly say that I am grateful to be the mother of this child and at the same time want to break free from her? What value am I ascribing to this remarkable little person when I am so eager to have some time apart?
Maybe, my weary appreciation of the moments where I need not be continually “on” for this little sprite of mine are actually a declaration of her value. After all, we tend to give our attention to that which we treasure. Jesus tells us that our heart is where our treasure lays. (See Matthew 6:19-21) He admonishes us to only treasure that which has eternal value. What could be more eternal than that precious little soul He has entrusted to my care?
Yes, it is hard, bone-wearying, emotionally draining work raising children like this. There are many frustrating days and sleepless nights. But the big picture is a beautiful one. So I relish these few moments reprieve from her chattering, and perpetual motion, and frequent mishaps because you never seem to fully appreciate what God is doing in and around you with these precious ones, until they are gone.
For Reflection: How does time away from your child help you hear God’s voice in the midst of your circumstances?