It’s not something I actually talk about a lot, but one of the weightier things about having a child with special needs is the designated isolation.
There is a physical isolation that happens as a result of not being able to attend, for example, a Sunday afternoon barbecue without either Tim or I having to be ‘on.’ If one of us wants to sit with the adults, the other parent will be required to entertain, engage, and chase Whitney the entire time. Then your left with two choices… guilt or work, and both lead to fatigue, when the purpose of any given event was to restore. I am not using an absolute for dramatic effect when I say that there are no relaxing family outings. This is a staple of the grieving process for parents like us.
The other isolation, perhaps the more challenging one for me to overcome as of late, is the emotional one. The challenges, emotional pressures, and exhaustion that are a part of our life with Whit is something that I find myself not even owning up too, until one of two things happen...1) I have an honest conversation with another parent-friend of a child with needs, where I realize that they are speaking some sort of secret language and now ‘all the things’ I wonder about are, in fact, not made up, but a reality, or 2) I ‘hit the wall,’ as runners say, to describe the part in their race when they feel like they cannot possibly continue… aka… exhaustion.
For both reasons above, yesterday afternoon I was feeling depleted, and in that depletion, temptation knocks at my door. It’s so tempting to wallow in how ‘others just don’t get it’ that makes me prone to victimization or offense. It’s the temptation to inhale bitterness about how not glamorous and unsuccessful my life sometimes feels. And, to be honest, if I felt like an awesome parent towards Whitney all of the time, this would be probably be a non-issue. But, for so many reasons, I don’t. So, there is yet another temptation to embrace my frustrations over how painful it is to either experience these isolations, or find comradery in identifying with others, because of them.
This was the backdrop for a conversation I was having yesterday with Linda, a fellow volunteer for our Adult’s with Special Needs Ministry, where I lead worship and host a small group. She was asking me how I got involved, and I decided to keep it real in my response. I told her that I was sort of forced into this population, and how I had no prior experience. One day I met with Greg, our Pastor for our Special Needs ministry, and felt more led to serve, then inspired to. I told Linda, though, how these folks have become like a second family to me, how they keep me grounded, and how grateful I am for the ridiculous amounts of the love and encouragement they bestow on me. I also explained to Linda, though, how difficult, emotionally, serving here can be for me, since this is, in fact, my ‘lot and future.’
We then engaged one of the men with special needs who was patiently waiting nearby, for his piece of cheesecake. He was tall, with kind blue eyes, and wore the same baggy jeans and plain hoody, common among our men folk. He told us about his upcoming trip to Florida, and how he was praying that God would provide him with an opportunity to make $62, so that he could fix his laptop before he left. He had the same exact mix of desperation and faith that I’ve experienced countless times over my version of a $62 financial need. He shared about how traveling triggers his struggles with anxiety. Then, as many conversations tend too, with these friends, I began to learn things about him that I probably shouldn't know.
This man told me about how his anxiety likely stems from the fact that his mother died right in front of him.
“I never saw that before,” he recounted.
She had a serious lung disease. Sometime after that, his father committed suicide; I’ll spare you the details. Without a trace of victimization, he was able to explain within his own limitations, that his anxieties were probably rooted in these instances. Yet, he showed such a resolve to problem solve and overcome, and we clearly saw his desire to not be a burden towards his brother, and his brother’s family.
He began speaking about how he loved coming to our Sunday evening group, and how much he loved the music. I observed his countenance change from a managed focus, to one of a more relaxed hope. As he was explaining to me how the worship allowed him to find peace, and a longed after connection to God, he stopped mid-sentence, looked directly into my eyes, and asked,
“Are you the Mom who just played guitar and sang?” as if a light bulb had just gone off.
“I am,” I offered, putting together that Cole was in his small group, so therefore he must know me as Cole’s Mom.
He began telling me with such genuine earnestness how much the worship time meant to him...how even if he didn’t know all of the words in the songs, he could just listen to the music and feel the nearness and peace of God.
Then, he paused, with eyes full of vulnerability and innocence. He looked down at his feet, and spoke slowly, a decibel just above a weakened whisper, and said to us, if not more to himself,
“I ...just ...really ...miss... my Mom.”
I bit the inside of my cheeks hard. I was either going to thank him from the bottom of my heart, or start ugly crying, and perhaps never recover.
It was in this exchange, however, that everything in my world came back into focus...my weariness, my frustrations, my lack of natural gratitude that day...they all gave way to this profound sense of sovereignty and the honor of being part of a holy space.
I was broken so that I could serve.
Had I not walked this path with Whitney, I never would have seen.
If I hadn’t seen, I never would have listened.
If I hadn’t listened to the needs, I never would have obeyed the call to serve.
If I hadn’t obeyed, but chosen to serve based solely upon my feelings, experience or giftings, I never would have showed up.
If I never showed up, I never would have become intricately involved.
And, if I wasn’t involved, I never would have been reminded that my purposes have so much less to do with worldly fame, success, performance and appearance, than the sovereign, holy, almost undetectable moments of God, that we sometimes get to be a part of.
Last night I was privileged with the honor of standing in the gap for somebody else’s son. I was given the gift, without realizing it at the time, of singing the songs of God’s faithful deliverance and love over somebody else’s boy, a man with special needs, who was aching for his Mamma.
I witnessed the powerful way God choose to meet his needs, needs that surpassed his $62 financial deficit. And, I have a feeling that the Lord was pulling back the veil of heaven just enough to remind me to trust Him. Even though I have not a clue as to how, I can trust that The Lord will provide for my girl, when I am no longer there anymore, to do ‘all the things.’ And, this is what takes the dry land of ingratitude, so naturally found in the center of my hardest places, and turns them into the springs of living water. He is always there and working, and in spite of the mess that will always be part of this world, and my life, I can exhale a breath of peaceful thanksgiving. I don’t know all the ins and outs of tomorrow, but last night I witnessed how the everlasting love of God will sustain Whitney, and all of our kids with special needs, beyond the limitations of our own graves.
And, truly, that is the opposite of isolation.