The Water Bottle and The Loneliness

Nathaniel climbed through the van door and scooted past his car seat to grab his water bottle. We had stopped at park near home after therapy; we were leaving to get lunch. "Thirsty Buddy?" I asked. He nodded, opened the folded yellow straw top, and tipped the bottle up. A drop of water dripped off his chin. We have been working on drinking since February. I have bought countless cups and water bottles. Some with lids leak on the cup side. Some with no lids leak on the Nathaniel side. Some seem to fill his mouth quicker than he can swallow and the leaking comes from everywhere. I had high hopes this new one would work. Nathaniel handed me his cup and crawled in his car seat. I wiped his chin, buckled him, handed back the cup, and prepared to leave. I had high hopes the first drip was an opps. Before the van crossed the park exit, I had to pull over. As he continued to drink, water continued to drip down his chin, neck, and into his stoma causing him to cough and need suctioning.

I set Nathaniel's cup in the front seat while I worked. When I failed to give it back, but drove off instead, he started to cry. He said drink on his talker. He pointed. He was mad and sad and frustrated all at the same time. Again I stopped the car. This time I offered him a drink while keeping a tissue close to catch the leaks. There, on the side of the road, we did life - Nathaniel in his car seat enjoying fresh water after playing at the park and me standing outside the van periodically wiping his chin so drinking was safe.

When it seemed his thirst had to be satisfied and my patience was passed expired, I warned that I was taking the cup, and we were going to drive home. "You can have the water again when we get home," I assured him. The warning didn't offset the disappointment when I followed through. A mile down the road, he pulled his HME off his tracheostomy tube and was sticking his finger in his trach. His completely age appropriate reaction - do something to make mom upset so I get what I want - has unusual consequences. While I have never heard of a child dying because they held their breath, I have wondered often if suffocation by index finger is possible for a kid with a trach. I pulled over again to coach him through the moment. We drove again. We stopped again. He had removed the paper filter from the HME and was chewing on it. He choked. He needed support. As I pulled in my driveway, much later than I had planned, I wondered to myself, "Who the heck would understand why driving two miles takes almost an hour and requires four stops?" I immediately thought of my friend, Roben.

She recently wrote on Facebook,

"I think some of the most difficult challenges for a mom of a person who is disabled are those small, everyday disappointments that happen to all of us. You instinctively want to reach out and connect with another mom. But the answer to, "Who can I talk to? Who will understand?" often comes back with a resounding "No one." Feeling lonely in the midst of friends gets tiring."

Roben had dozens of responses to her post. They ranged from "I understand that all too well..." to "I can't say I completely understand..." A couple people suggested she find a group. To that my friend replied,

"Anytime you find a group of forty-something married Christian women who homeschool full-time, work part-time, have adopted from foster care, have a disabled child and one with ADHD, are wanna be actor/writer/directors and outgoing introverts... let me know! (And if they have good looking husbands, I'll definitely relate!)"

Her humorous response is telling. Her loneliness is not for lack of friends facing some of the things she faces, rather she feels isolated because of the immense conglomeration of all of it. Her unique life position, coupled with her unique set of children, and the unique challenges that disability brings into their family plants her in a remote place rarely passed by others. She is, like all of us, one of a kind. Also like all of us, she faces a one of kind amalgamation of life. Like my drive home experience today, we all probably answer the heart cry, "Who can I talk to? Who will understand all of this?" moments with "No one."

And yet, despite the exhaustion of being lonely in the midst of friends that I feel along with Roben, there is a goodness in this loneliness. When I ask that "Who can understand?" question, the people who come to mind first are Rich and our other children. They get the daily-ness of my life as a special needs mother in ways no one else can and that shared experience has made us closer and stronger as a couple and family. I saw that family "we are in this together" spirit ten-ish years ago when I first met Roben. Her daughter was an infant at the time; the family new to special needs, but already they had the qualities that are developed through a shared history and facing adversity together - compassion, trust, endurance. I would not remove one day of the loneliness I have experienced as the mom of a special needs child if it meant I had to give back the relationships with Rich and my children that have been changed because of the experience. I am aware that my single mom friends lack this intimate connection; watching their experience makes me appreciate even the hard days of marriage and family life.

There is another goodness in the loneliness. Roben personally replied to all the comments on her Facebook status. She found mini-commonnesses with many and thanked them for those similarities. Likewise I have many friends and acquaintances who share pieces of my journey. Nikki has a son with a g-tube and they are working on feeding too. Leslie and Roben have daughters who seem to require frequent medical interventions and hospitalizations regularly. Emily has a daughter who thinks church is too loud. Elizabeth has a son with a tracheostomy. We met face-to-face in the Radiology Department at Cincinnati Children's after developing an online friendship; it is comforting to know another mom who has bagged her son with an ambu bag and rotates sleeping shifts with her husband. Julie has a son uses an AAC device; she also made a difficult surgery decision last spring. Brittney has worked hard for three years to keep her son free from respiratory infections. Pam is in the thick of parenting young children, older children, and being a grandma. These women, and many others I haven't mentioned, form an unique-to-me community. Some I talk to often, some rarely, but they are my people. They are the people I can go to with questions or when I need encouragement. I will never find a friend facing the exact life I am; but walking through life alongside many with micro shared experiences provides a richness and diversity I would not find in one friend alone.

There is a third goodness in the loneliness, perhaps the most important of all. Loneliness creates a vacuum that only God and a growing faith can fill. I run the risk of sounding cliche and using all the Christianese words now, but it has been a simple truth for much of my mothering years and increased since Nathaniel came home. When feeling misunderstood and companionless, I seek God more. I am not referring to a read five verses and get the warm fuzzies "everything is ok," kind of experience. This has not been a make up done, gray hair dyed away, Bible study videos with fill in the blank workbooks kind of journey. Rather it has been full of mascara running while making dinner days. The "I have no idea where to turn in my Bible" kind of clinging. The "I think I might break" sort of workout stretch that leaves a soul spent in the immediate, but stronger after rest.  Psalms have always been reassuring of God's character in these seasons. Carrying a favorite or encouraging Bible verse written on an index card in my back pocket offers the immediacy I often need when prone to self pity. My daughter shared a long quote with me today; I liked the excerpt "Always give God room to prove Himself faithful." My moments of mothering loneliness gives God room to be faithful.

Nathaniel's water bottle somehow ended up on the couch where I sit and write. Again it is leaking, leaving a dark spot on the cushion. I consider getting a towel, but don't. I right the bottle instead and leave the spot. Like loneliness, it will be present for awhile and then disappear. Unlike the water spot, loneliness leaves a lasting mark. It changes me every time it leaks into my day to day life. It causes me to be more grateful for my family. It prompts me to connect with friends who share small similarities. It shows me God's faithfulness. Oh let the loneliness soak in deep, and do its work in me.