By DeAnn Feltz
Becoming a mother was beautiful. But about 2 years into it, I was certain that God had made a mistake.
I grew up in church. Never missed a Sunday unless hospitalized, because, honestly, how would that look? My husband Jim was raised Catholic, same thing, alter boy who never missed. He was half awake, but still upright in the pew. And yet, we both drifted away from God like a kite. A little bit a string let out slowly gains a lot of distance until it can’t even see the hand that it is tethered to.
Or maybe there wasn’t a tether. Maybe God didn’t even exist.
Where was I on the religious line diagram? Spiritual but not religious. I really wanted people to notice my bookshelf and then deduce “academia” and corresponding intelligence. My fat Norton Anthologies, a litany of spirituality books as seen on PBS, a beginners guide to Buddhism was chic with nice binding. A worn, dusty Bible sat beside Howard Zinn’s A People’s History of the United States. After only 100 pages, I laid it down in disgust. Organized religion caused most, if not all, the wretchedness in the world. The bible stories of my youth were just that, stories.
And, really, Jim and I had been fine on our own. We got married in Vegas, if that doesn’t spell confidence and autonomy, I don’t know what does. Yes, we were fine.
Until we weren’t.
Madeline was born on 7/7. Lucky numbers. She was perfect. Stuck in the birth canal for an obscene duration, taking her sweet time, but made her entrance with a surprisingly well-rounded head and healthy scream! She would prove to be delightful, inquisitive, beautiful, took her vaccinations like a strong warrior, etc., etc.
When she wasn’t babbling by 15 months, I assumed she was more physical than verbal. I even relished that maybe she was a thinker, like me. Processing. Analyzing. She would look so deeply into my eyes while studying my face, it made my heart hurt. Maybe she’d be a writer, or musician, or ballet dancer. Maybe she’d finally get her masters and take more risks in her twenties. I’d rock her to sleep assigning little bits of my inadequacies to her. She’d be articulate for sure.
By 18 months, no progress in language. She ignored us a lot. Something was wrong and I could feel dread sitting on our welcome mat patiently waiting to be invited in. But I was 7 months pregnant. In my hormonal state, I could only handle one life event at a time. I’d deal with whatever was going on after the baby was born because, as all new mothers know, clarity and decision making come easily in those first few weeks after birth.
Madeline’s little sister Audrey was born on her due date in 45 minutes. She, too, was beautiful. Red hair and easy going from the start.
Audrey was 20 days old when we found out Madeline has profoundly deaf. I watched her through the audiologist glass as she sat on her dad’s lap listening for the beeps and clicks. I saw the sadness creep up Jim’s face as he heard every tone while she had no response. He hid his tears by praising her and swallowed her up in kisses for doing such a good job. Our daughter was deaf. I didn’t know anyone who was deaf.
We made it all the way to the hospital lobby before breaking down. Droves of people walking past us, sad looks towards sobbing parents, someone set some tissues down beside us. What kind of mother doesn’t realize her daughter is deaf? What did I do to make her deaf? How would I fix her? A yoke of guilt wrapped around me before we made it to the parking garage.
By age 2 Madeline had surgery for her first cochlear implant. Prognosis was good for young children. They could “hear” with the implants and learn to speak, to various degrees. We were doing sign language and sandwiching our sign language with spoken words. The game plan was to bombard her with language so that her brain would adapt to sound and eventually learn to listen and speak. We were hopeful and ready to set up all avenues of success for her.
She hated it her cochlear implant. She’d toss her $10,000 equipment across the room and cry while signing “no, no” to us. The washing machine noise was terrifying for her and one fire truck down our street blaring it’s horn, set her off on a 1-hour meltdown. Everyday, I tried to limit how much she was startled. We were assured it would take time to adjust. She received her second cochlear implant four months later. But still, hardly any speech was happening. She avoided us. Refused to look us in the eye because we expected “words” from her. Our once happy child hated sound. And music. And my voice.
On my worst day, my audiologist said that I needed to be tougher. “Make her wear them at all times. If she throws them off, make sure there are consequences.” So after 3 times throwing them, I grabbed Madeline’s arm and set her down hard in her little wooden chair. I signed to her “SIT! 2 minutes.” I stuck her implants back on her head pushing her device hard against her head and her soft blond curls. She heard me slam the bathroom door and we both cried, separately. Me sitting by the toilet sobbing and, her in a time out chair, listening to her own sobs. I’m failing on every level. I’m too exhausted to be a good wife. My baby isn’t getting any attention as I am just barely meeting her basic needs for survival. I’m so wrapped up in Madeline and I don’t even know how to help her.
She didn’t like me much and as much as I loved her, I didn’t like her either. The shame of that sat in my belly and I tired to push away that the fact that it was so much easier to love Audrey.
All the specialists thought it was odd that she wasn’t progressing. Many tests and therapists and paperwork later, she was also diagnosed as autistic.
There is a quick highway from numb to deep depression and back again without many exit ramps. I could not parent this child and do a good job. I couldn’t even provide a happy childhood.” You see I had plans and blueprints of how I was going to do it better than my parents. And now every single strategy was scrapped.
My friends would come with their typical children and talk about what their children were doing or not doing. The kids chattered and snuggled their mothers. I seethed inside with jealousy. I wanted to scream at them, “You have it so easy. Get out of my house!” But instead, I just stopped inviting them over and made excuses for ducking out of play dates.
Jim would come home from a long day at work and I just wanted to escape. I wanted to hand over the kids to “the loving parent.” I thought about packing up and leaving. I felt so much grief that I couldn’t walk away and be happy but I couldn’t stay and find any peace.
I had stepped so deep into the muck of motherhood and there was no way out. “Do you hear me God? You made a mistake. I’m not the right mother for her.” I yelled at Him, but for the first time in years, I acknowledged that maybe He existed.
By the time Madeline was 4, she was using sign language and trying to speak. She was still lacking eye contact and anytime she tried to speak to someone, we had to interpret. But she was trying and working so hard. Her little sister Audrey was 2 and talking in complete sentences. Audrey would sign with Madeline and sandwich her words just like us. She was patient and kind and carried the weight with us.
I spent most of my days in the car driving Madeline to therapies hauling Audrey along with us. I was training the therapists on her idiosyncrasies, her sensory issues, her multiple diagnosis and her equipment. By the time, there was a good relationship going with speech therapists, occupational therapists and physical therapists our allotted number of insurance visits would run out.
Our public preschool was only 3 days a week for 3 hours and every single day we were losing ground. Long days turned into quick months and when her preschool got relocated to an office complex with other kids with disabilities, the deaf ed program was the smallest so that they put the class in the only room left – the janitor’s supply room. No windows, no outside playground. There was a cherry tree painted on the wall. My daughter was going to spend the next year in a janitors closet and I just broke.
By age 4 ½, Madeline had the language skills of an 18 month old. We were overdue in making decisions about her future education.
We applied to a local deaf school that specialized in oral education. It was close and we hoped we could figure out how to pay for private education later. But they wouldn’t take her. Her autism diagnosis was not something the school felt they had the resources to deal with. It never occurred to me, that if we could come up with the tuition, that a school would tell us “no.”
There was a school on the east coast. We called, sent in her paperwork, and attached an adorable picture, complete with eye contact. They, too, said they couldn’t take a deaf child with autism. She was too far delayed. Panic set in.
But this time, we did something we’d never done. We wrote down 5 prayers on post it notes. Jim had one and I had one. We laminated them and read them out loud several times a day. At first it was just weird and I didn’t have a lot of faith our lip service would put into motion anything. But I had hoped God would consider helping her, despite my doubt. The first one was:
1) Find a perfect school for Madeline
I meekly challenged God. “Can you move the world? Can you meet all these needs because we are asking a lot from someone we rejected so often? We don’t deserve your miracles, but God, Madeline really does.”
We found a school in St. Louis that had an enormous amount of success with deaf children, some of which had multiple disabilities. Jim and I took Madeline for a visit. It was wonderful, small classrooms, teachers who studied oral deaf education. The latest technology and sunny rooms. Madeline melted down several times while we were there. She didn’t make any eye contact. And they, too, said they couldn’t take her. “Update us in a year and we can re-evaluate,” they said. I could barely choke out, “In a year, she’ll be further behind.”
This time we cried in the parking lot. Our perfect school, our last hope, had rejected all of us. How can this be? We were willing to pick up and move anywhere and no one would take Madeline.
We were due to fly back the next morning. We were staying with my cousin and she was so heartbroken for us. She said, “there’s another school ten minutes away from here. Call them and see if you can drop in.” I couldn’t. I couldn’t handle one more rejection. So she called. On a Friday afternoon at 4:00, when school was already out, we limped into St. Joseph Institute for the Deaf. The principal Mary stayed late to give us a tour and talk to us. Madeline signed her whole alphabet and did her best vocalizing each letter. She smiled and made eye contact. She played with plastic food and pink pots and kicked a ball. Beautiful, typical behavior.
Mary said they would consider taking her. If we could bring Madeline back, they would evaluate her over a few days and make a decision as a team. Someone was going to give her a chance.
Four months later, Jim and Madeline flew back to St. Louis for the evaluation. I had just had our 3rd child, Leo. Another red head with dimples.
The night before the evaluation, Jim called from St. Louis to say had Madeline had thrown up. My heart sank. She wasn’t running a fever but she didn’t feel well. Jim called the next day and said she had a meltdown when they walked through the front doors of the school. Jim was an amazing dad, but I was so intertwined in her everyday existence. I knew all her nuances. I knew minutes before she was going to melt down. I was the one who knew how to distract and redirect. And I wasn’t with her. I had no control.
That night, I sat on the bed criss-cross, the room lit only by the TV. 10-day-old Leo was nursing and Audrey, 2 years old, was asleep on my knee with her red hair fanned out around me. I was sleep deprived and irritable, still sore from giving birth, hating that I wasn’t in St. Louis with Madeline and Jim. The tears fell, which wasn’t different from a lot of days, except that I cried out to God with what felt like an emptied soul. I had nothing to offer but “Help me. Help me. I’ll do anything. Just help her.”
For someone who barely recognized God, the marrow in my bones recognized the Holy Spirit immediately. The sweetest compassion I’ve ever felt, presented itself the same way Madeline hears sound – from the top of the head. The Holy Spirit seeped down around me like water and soaked into my tired, swollen body and covered me. And I knew I had handed her over. Now all the “doing” would shift and somewhere within that space there would be rest. Whether she got into the school or not, I felt peace.
Jim called the next day. “She bounced back and did great. She was funny and engaging.” What? Words I rarely heard in reference to Madeline. I teared up with joy. “And, baby, they’ll take her.” I wept and he wept. And everything changed.
1) Our first prayer – a perfect school for Madeline. Check.
Then some of the hard reality hit. How could we sell a house in this economy? Jim was the sole income and was going to leave a job he loved? We needed to leave our beloved Pacific Northwest. Would Jim find a job? Where would we live? We had a lot of people wishing us well but when the asked about our plans, we had none. There were a lot of wide eyes and patting our hands and kissing our kids with sidelong glances of worry. We needed to do everything in 6 weeks.
But we had our list – dog-eared, laminated post its- and we kept our focus and prayers on the other four requests:
2) Quick house sale in Portland
3) Fulfilling and well paying job
4) Find a great, affordable house in St. Louis
5) Money for Mad’s education
I took the kids and flew to the Midwest while Jim packed up and put the house up for sale. Before Jim left, our real estate agent had shown the house and sold it to the first people who saw it. And we got our asking price. 2) Quick house sale in Portland. Check.
By our fourth day in St. Louis, Jim had already had two interviews with one company. We learned that his former boss had called around St. Louis, hunted down the president, had a conference call and talked about what a hard worker he was and a great man. By day five, Jim had secured a job. 3) Find a fulfilling and well paying job. Check.
We needed an affordable place to live. We found a foreclosure and in the online silent bid, put in what we could afford. It wasn’t a lot but it was our best offer. We liked the house but didn’t get our hopes up, as we knew there was a significant interest from other buyers. Our real estate agent called us and said, “You got the house!” Happy but a bit dumbfounded, we learned that our offer was accepted, in part, because our real estate agent didn’t take a commission. She had felt so moved that we would pack up and do anything to help Madeline and wanted to help us. 4) A great, affordable house. Check.
And then 5) money for Madeline’s education. We weren’t sure how we were going to swing private education. However, the school came through with some significant scholarships and grants to lessen the burden on the monthly tuition. People who didn’t know us, who didn’t know Madeline and her amazing potential were donating their money to help fund her education. Number 5) Money for Mad’s education. Check.
You did it God. Where is my humble pie so I can eat of it?
“God, I can’t even say thank you without being on my knees. You did move the world. You made it so obvious that we couldn’t miss it. You made it so profound we couldn’t forget it.”
And I just felt him say, “Did you notice, I did it in the order you wrote it down?” Wait. Did God just mock my disbelief a little? Does God have a sense of humor, because if he does, I would really love that. So wait, He wanted to help Madeline because he loves her but maybe he wanted me too.
Did He love me so deeply that my tiny, miniscule faith was enough to invite a relationship with Him? Madeline was young and pure and she really deserved all his great grace but I did too? “But God, I didn’t even believe in You and I’ve already wasted so many years and frankly, after all the amazing things you’ve done, I’ll probably still doubt Your goodness and your abilities. I’ll question your plan. That’s how bad I am.” All I could hear and feel God responding, “come here, come here, come here.”
So Madeline went to school at St. Joseph Institute for the Deaf. And she hated it. But she adapted and grew. With confidence came better eye contact. The more she engaged, the more she loved school. The more she loved school, the more she loved and trusted her teachers. The progress compounded and compounded. Every ounce of hard work and gratitude she gave, God multiplied it. He lined up people to help her for 4 years at that school. The world of sound that she hid from became a world she thrived in.
And now she speaks.
You should hear her.
Dear God, Thank you for crushing me in a way that only your sweet, sweet aroma could be released. Thank you, in your mercy, that you did the same for my husband in your perfect time. Thank you for the struggle because only through the weight of it, could we measure it and compare it to the profound transformation that happened.
I was so low, the dirt and grit of rock bottom filled my nostrils and saturated every thought but you met me down in that pit and gathered me up. You gathered all of us up. You’ve blessed us with a child with disabilities that daily walks in this world, but is not of this world. Thank you for reminding me that this is true for all of us.
Everyday, I have to trudge her up to your cross and deposit her. Because, the lack of birthday party invitations, teams she doesn’t make, blatant social quirks and wringing my hands about who might reject her, all of it whispers, “stop” at the cross.
I’ve relinquished too much joy and I won’t miss out anymore. I can’t carry the anger, worry or sadness that permeates myself and my family because, as much as I’d like it to be different, I’m the mom. I set the tone. Only in bringing her to you, bringing all my children to you, do I relinquish that your plan is better than mine because my dreams for my children are too laced with the intricacies of the world and heavy with my unquenched ego. Call me out on this when I forget, because I will.
Let me be comfortable with the tears that come when I speak about Madeline and our journey because I’m so moved that I couldn’t tell our story without your name in every word, every pause, and every sentence.
Madeline knows you, she writes you letters when she is supposed to be sleeping and she sees your hand in her everyday life. She thanks you every night for your power and she does it in such beautiful speech. She leans on you in a way that I want to emulate.
I pray that you continue to crush our children in that same loving manner so that they understand that you long for a relationship with them. Do it early. Let them recognize the sweetness of your grace so they don’t waste any more time. Let this prayer trickle down through the generations, traced back to one little deaf girl who took her broken family by the hand and led them back to God.