I cried in the doctor’s office today. I just couldn’t help myself. After seeing my son’s face under the UV lights and hearing about the threat of the spreading depigmentation, I cried. I didn’t want to, oh how I didn’t want to cry. My child was there, so was the doctor, and another doctor and another nurse or helper. They were all understanding and kind, but I just couldn’t help it.
I’ve been fighting tears for the rest of the day. There is no safe place for me to really cry. I don’t know who else would understand.
I figuratively shook my fist at God. “Why does this one child have to have so many things wrong?” I asked. “Why, why him?” And then I thought of myself… the burdens seem to be multiplying and I asked God why so much is being heaped up on me? “Why” is the quintessential question that each one of us asks when pain or hardship or suffering comes our way, and I simultaneously wanted to ask and not to ask, but today– I did ask, not expecting an answer, but needing to cry out.
The entire morning in children’s hospital, though, I noticed something I had not seen before. This particular day I had seen at least 10 different children in wheelchairs, being pushed by parents or caretakers. The degree of disability varied, but many of these kids could neither speak, nor walk or both. Some of them had brilliant minds, trapped under their dysfunctional bodies. Some of them had underdeveloped minds. I was wondering– was there a special pediatric neurological clinic scheduled today? A special conference? Why so many today?
I know God was gently reminding me how much worse it could be. At least my son can talk, walk, eat by himself, laugh, sing, jump, cry, crawl, tease, joke, read, write, think, reason, climb trees, run, swim… and he comes to me for hugs several times per day. The parents of those children will never have the joy of seeing their children do so many of these things. They don’ t get to hear their children’s voices. They don’t have the joy of receiving hugs. And those parents are ALWAYS on call. For the rest of their lives, they will be parents and caretakers of their special children. They won’t get to experience a true “empty nest”. And those sweet children will never have normal lives. Those children and parents have to get used to being stared at, and looked upon as different. They have to get used to our looks of compassion, sadness, and may I also admit– our selfishness when we think to ourselves — “I’m glad it’s not me and my child!” It’s true, I’ve thought it myself, maybe you have, too? How easily it can be any one of us, though, and I find myself searching for words, or even a look of friendliness that I can offer a stranger or a friend, and I come up empty. I just don’t know what to say. I feel that since I can’t truly understand their lives, and I can’t fully identify with their grief and loss, that I can’t offer anything that they haven’t already heard or already know. And that is another lesson I learned today. To squelch that could be hindering the words God wants that person to hear… the Holy Spirit uses us in spite of ourselves, and his strength is made perfect in our weakness (can I hear an Amen?!). I shouldn’t automatically presume I have nothing to say or to offer them; I can assume what a lonely journey it must be, and perhaps I should just be myself and not try to come up with anything profound to say.
And so here I am, with a child who is entirely functional, but with health issues that need to be dealt with. The long list of food allergies and asthma can’t be physically seen, but the vitiligo can, and it can be physically disfiguring and emotionally and psychologically damaging, if it continues to progress.
I can grieve, but I need wisdom on how to prepare my child. What if the medicine doesn’t work? How can I equip him? There will be pain, rejection, no doubt, but as a parent, I’m asking God to give me what I lack, to give me the wisdom I need, and to give me strength to help him. And I realize that, illness or no illness, these are lessons he needs anyway, for trials will most definitely come, if not in this form, then in another.
While this condition can be disfiguring and hence emotionally traumatic, his life can still be full. He has hope. HOPE! Hope, what a lovely four-letter word. A word that has stood out like a flashing marquee, from God—HOPE! This condition doesn’t have to define him. He’s not defined by any illness, what his skin looks like, or any other thing — but by who God made him to be– His beautiful child, created in His image, and loved deeply by Him. Take away our skins– and that is who we all are!
First Peter 5:7-8 says, “Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.” (NIV)
So God, I’m casting all my anxiety on you. All my cares. Ohhh, there are many. Your word promises—you will lift me up in due time, I’m kinda down right now, but your mighty hand is there. You care. Thank you, God! There is someone who cares, people!
My son asked me when the doctors left the room, “Why are you crying?” I had to explain it to him. “Because I just felt a little sad over your white spots. But it’s ok, you’re going to be fine, and I’m going to be fine, too.” And what I can also say is, “We have hope. This life won’t be perfect, our bodies won’t be perfect, no one is perfect, but we have a hope in something that is perfect, beautiful, eternal– God’s words, His promises, His love… and Him. And all will be well.”