Disability, Adoption, and the Heart of the Gospel

I was 24 years old. I was walking up Ionia Avenue, back to work from my lunch break. It was an unusually cold and icy day in March 2014, and served as a reminder that Grand Rapids, Michigan had just survived the "Polar Vortex".  It had been a terrifying winter for me. That winter, my body had been blackened and bruised by ice and pavement over and over again. I was so afraid to leave my apartment every morning. I didn't trust my body to keep me safe. 

A co-worker of mine had been pregnant that winter, and as her belly grew with new life, I noted how challenging it was for her to navigate through her daily life. I was thinking about her as I was walking back to the office that day. I was thinking about my own limitations with Cerebral Palsy, and how I couldn't even fathom the compound difficulties of carrying a human life in my often hostile body.  And then, just like a light switch, an idea came to my mind. "I don't need to give birth in order to be a mother." 

I was single at the time, and in my first year of graduate school to become a social worker. I had never been in a serious relationship, so the hope of marriage seemed very unrealistic. Yet, this idea of adoption-only motherhood opened the possibility that I could still love a child, and raise a family, even if I didn't have a husband. 

This decision sat in my heart and mind for a while, with more than just my disability building the logic of my case.  As a social work student, I was continually being exposed to the overwhelming need for good and loving parents in a very broken foster-care system. To live out the social justice of my profession, I had a moral responsibility to adopt and advocate for adoption above all else. I even wondered why couples were still choosing to have biological children -- didn't they know that this world is overcrowded, and that thousands of children age of out foster care without knowing the stability of loving parents? Adoption, I self-righteously believed, would be my radical proclamation that my children don't need to look like me in order to be loved by me. As an adoptive mother, I would be respecting my physical limitations and reflecting my professional convictions. 

Sharing my decision, however, was something I was less comfortable with. I knew that people face infertility, so choose to adopt. Or I knew people like my parents who, as part of their deliberate family plan, have two biological children and one adopted child. But were there people who could have children, but chose to adopt instead? Would people consider me less of a woman because I was willingly giving up a natural, God-given function of my biology? 

Some people cautioned that my feelings would change when I met the "right man”. They assured that if he wanted biological children, I would, too, and that it wasn't entirely fair of me to make this decision on my own as a single woman. Or, from the disability angle, they would tell me stories of other women they knew who have Cerebral Palsy, and how, "She had children, you can, too!" Even my gynecologist was skeptical of my absolution. She shared stories about patients who have Cerebral Palsy and actually experienced relief during pregnancy. She didn’t want me to make such a life-altering decision at such a young age. 

The following summer (2015), was an incredibly reforming summer for me. I began truly exploring my Christian faith for the first time in a long time. I began reading books and articles about the importance of honoring Christ as a celibate, single Christian. In that elementary research, I began to learn very sound Biblical teachings about the rightness and importance of adoption in the Christian life. It was refreshing and relieving, so different from the "be fruitful and multiply" Christian rhetoric and culture that I was so familiar with. 

That same summer, I met David, and for the first time, saw the glimmer of a good and God-honoring relationship. When he and I were first spending time together, I was nervous about sharing my convictions with him. My choice to not have biological children was resolute, and if he expected to marry a gal who would bear him lots of children, then I had to tell him wasn’t the one for him. I brought up this “deal-breaker” on our second date, and carefully outlined all of my reasons. He was immediately affirming of my decision, and pointed to Scripture’s revelation that we are adopted through Christ. He shared stories of Christian couples he knew who chose adoption as a way in which they deliberately lived out the Gospel, and as an answer to the problem of abortion. I had never heard of this before, and I deeply respected it.  

My thoughts on parenthood and fertility and reproductive choice have ebbed and flowed over these last three years, and this blog piece has been drafted, deleted and re-written numerous times over the last year – our first year of marriage. This summer, I discovered the writings of Rosaria Butterfield, and though I resonated with so much of her clear, direct Gospel-centered writing, the way that she writes about her role as a foster and adoptive mother, has finally prompted my own writing about this subject. I cheered out loud when I read the following passage from her book, The Secret Thoughts of an Unlikely Convert. She writes about the struggles and heartbreak of a failed adoption when she says: 

“Betrayal and risk are at the heart of the gospel life. This I know: God heard my prayers. In this broken world, people break promises (and contracts). The social worker that made the contract and the social worker that broke the contract are women I respect and value. We come to the table with different points of view. Because we are Christ’s, we know that children are not grafted into a family to resolve our fertility problems or to boost our ego or to complete our family pictures or because we match color or race or nationalities. We know, because we are Christ’s, that adoption is miracle. In a spiritual sense, it is the miracle at the center of the Christian life. We who are adopted by God are those given a new heart, a ‘rebirth’.”

If David and I adopt children, we know that there is potential for heartbreak and struggle and uncertainty. Yet we also hold firmly to the convictions that Paul writes in Ephesians 1:4-14: 

“For he chose us in him before the creation of the world to be holy and blameless in his sight. In love he predestined us for adoption to sonship through Jesus Christ, in accordance with his pleasure and will— to the praise of his glorious grace, which he has freely given us in the One he loves. In him we have redemption through his blood, the forgiveness of sins, in accordance with the riches of God’s grace that he lavished on us. With all wisdom and understanding, he made known to us the mystery of his will according to his good pleasure, which he purposed in Christ, to be put into effect when the times reach their fulfillment—to bring unity to all things in heaven and on earth under Christ.

In him we were also chosen, having been predestined according to the plan of him who works out everything in conformity with the purpose of his will,  in order that we, who were the first to put our hope in Christ, might be for the praise of his glory. And you also were included in Christ when you heard the message of truth, the gospel of your salvation. When you believed, you were marked in him with a seal, the promised Holy Spirit, who is a deposit guaranteeing our inheritance until the redemption of those who are God’s possession— to the praise of his glory.”

This is our aim in marriage, in (potential) parenting, and in life. That all things may be done to the praise of his glory. 

About My Dad

My dad and I got together for a late afternoon lunch date on Friday afternoon. We hadn't spent a significant amount of time together since I got married, so the chance to catch up at our two favorite places, (Panera Bread and Barnes &  Noble) was the perfect way to end a long workweek. So much has changed for our family since Dad and I last had a meal out together.

When we were at Barnes & Noble, I took the escalator to the second floor to find a few books in the Christian Living section. Dad promised to wait for me on the main floor. Once I found my selections, I moved to step onto the down escalator, and my body rebelled. I couldn't see where one stair ended and another began, and my brain no longer trusted the step that I was in the middle of taking.  I twitched and pitched forward, nearly falling, as the stairs continued to roll beneath me. Scared, I jumped back and away from the escalator, and began to panic.

I decided to circle the floor to find an elevator, but after three rounds, I couldn't see where it was located. I couldn't find a salesperson, either. Anxiety and embarrassment flooded through my adrenaline. "I'm stuck on the second floor of a bookstore!" I told myself, momentarily thinking that it really might not be the WORST place to be stranded forever. But I had to get down to the main floor sooner rather than later.

I needed my dad.

I peeked over the railing to see the first floor beneath me. There was my dad, tall and relaxed, his arms folded over his chest, his snow-white hair like a beacon in the store light. He was watching out for me, just like he has been watching out for me my entire life.

When he turned his face in my direction, I waved my hand in a quick, "Come here!" motion, and he strode towards the escalator.

"Couldn't you find your book?" he asked once we met at the top.

"No, I found it," I answered.  "I'm really embarrassed, but...I'm scared to go down the escalator. I almost fell, and now I'm too scared, and I need your help."

"Oh! You don't need to be embarrassed about that, sweetie!" Dad assured. "Tell me what you need."

"If you'll just let me take your arm to steady myself and then tell me when to step down, I think that'll be great," I explained.

Dad offered his right arm, and as I rested my left hand on top of it, he said in his gentle tone, "I'll never stop being your dad, you know. You don't need to be afraid to ask me for anything."

Those words would have been dear and cherished at any time in my life, yet hearing them on that day held significant meaning

Two months ago, my dad was diagnosed with idiopathic pulmonary fibrosis. At the time of diagnosis, his life expectancy was predicted to be another three to five years. Since then, there is hope that he could live longer -- maybe ten to fourteen years -- but there's such uncertainty in every single aspect of the diagnosis, that in my mind, it just feels like a numbers game.

What we do know for certain is that this diagnosis will end my father's life, and though he and his doctors are doing everything in their power to impede the disease's progression, when the time comes, Dad's death will be a long process, and it will be incredibly painful.

"It's weird, y'know, having this knowledge about how I'm going to die," Dad said to me earlier in the day as we sat in Panera Bread and talked about everything from work, to summer plans, to what it means to grieve a future death.

We cried together a few times in this conversation, and it was healing and relieving for me. I haven't been confronting news of Dad's diagnosis in my every day, but there are moments when I am stopped and stilled by the enormous weight of uncertainty, the real possibility that I may not see my father become the retired old man that he wants to be, that my mom will lose her life partner, and that these things will happen sooner than any of us planned. There are times when grief sneaks up in uninvited spaces -- a few harsh words towards my husband, or unnecessary anxiety about a simple mistake at work. To sit and look into my Dad's eyes and speak about how we're processing what's happening to his body and how it will affect our family, was therapeutic.

"I just don't want to remembered as an angry, dying man, Cassaundra," Dad continued. "I don't want this illness to make me some guy who's pissed off at the world simply because he's dying and it isn't fair."

"You won't be, Dad." I stated.

Whether it's five, ten or -- Lord willing -- fifteen years from now when my Dad does pass away, he wil not be remembered for anger or bitterness, because that's not in his character. Jeff Bell will be remembered exactly as he was in that store on Friday -- a man who deeply cares for his family, who always holds his kids' safety and interests at heart, and who is willing to help in any situation.

So begins our walk into the valley of the shadow of death. And if, during this journey, I'm afraid to take shaky, uneven steps, if I am afraid of falling forward into despair, I know that my dad will offer me his arm; he will be there to steady me, to talk with me, just like on that escalator. And I'll be there to steady him, and we will cry and grieve and celebrate life together, all of us, as a family.

Together, we are learning what it means to grieve monumental loss, even as we still live.

The Disabled Bride

 

Though I have lived with this body of mine for 28 years, I'm still learning how to listen to it. Disability affects every part of my life. As I've learned rather suddenly, this includes even my thoughts and actions as a bride-to-be. When David and I got engaged in November, with a wedding planned for the spring, I was genuinely concerned with how the stress of planning a wedding would compound my chronic pain and fatigue, especially knowing that Michigan winters and professional stressors make the effects of my spastic Cerebral Palsy much more pronounced in my daily living during these cold months. However, I knew that a short engagement was a non-negotiable for us. We knew that God was calling us into marriage, and we wanted to honor that call as soon as possible.

I sought advice from other professionals in my field. I talked with my doctors about my health concerns.. I talked with my future husband. How could  we all work together so that I could maintain my professional sanity, my personal health, and my commitment to planning this event?  I seriously considered forgoing the whole event, and instead, thought of marrying David in an intimate ceremony with only our siblings, parents and grandparents in attendance. There were a lot of reasons for this consideration, but my concerns for my physical stamina to get through this season were prominent.  Maybe other people could do the big wedding, I thought. But maybe those people aren’t battling their bodies on a daily basis. We have reasonable accommodations in the workplace; can we think about extending those to societal events and expectations?  

I recalled, rather grimly, how on my brother Joshua’s wedding day, my other brother, Christopher, had to carry me to the van after we had our pictures taken because my muscles locked up in the early November chill, and I couldn’t move my legs. Thanks to some pretty strong muscle relaxants and Advil, I was able to celebrate and dance that night, but those moments of pain still punctuate my memory of an otherwise joyous day.  I was afraid that on my own wedding day, with nerves and excitement at an all-time high, and everyone watching my every move, my body would just be like, “Um, yeah, I’m not gonna function anymore today, ‘cause this pressure is too much. BYYYE!” and I would be in visible pain, and everyone would be sad and blah blah blah.

David and I decided to go the route of traditional wedding – the people, the cake, the dancing and the whole bit – so I decided to change my mindset. I decided that the wedding itself was periphery to the actual thing I wanted. A marriage. So, I told myself, I wasn’t going to care about being a bride, when really all I wanted was to be David’s wife.

With that shift in focus, I decided that wedding planning would not alter my life in any way. It would be the thing that I could use to fill my time, when I had time. Like a hobby or something. I did not want to compromise my work goals, or my social engagements, or my physical health. It would be great! I would be an example for all women who felt that they had to cave to these cultural norms and pressures of planning a really expensive party, AND I would be an advocate for disabled brides everywhere! “Your body doesn’t need this stress of planning a big wedding, ladies! Don’t even think about it!”

 Haha.

For the most part, I have been really mindful of my self-care. The days that I have taken away from work have been primarily due to my spastic Cerebral Palsy, and have had very little to do with actual wedding planning, which makes me happy.  However, I think that weddings bring a whole lotta stress, no matter who you are, so my body has been reacting to that in full force these last few weeks. It’s been fatiguing  in the worst ways.

This blog post, for example, began as an idea I had on Monday night, when I was awake until two in the morning, battling insomnia, a killer migraine and fully body spasms, all while simultaneously bursting into lists of things I hadn’t accomplished yet or even thought about for our wedding day. As I shoved my face into the pillow and hit snooze a million times on Tuesday morning, for the first time in this whole process, I regretted my decision to just keep charging ahead as if nothing monumental was happening. As if I didn’t have physical limitations.

I wish I would have been better about listening to the needs of my body. I wish I would have taken the time off; not because I’m a bride, but because I am a woman with a physical disability that demands that I carefully steward my time and energy.

I know that my wedding day might look a little different behind the scenes. I already made the emotionally painful decision to not wear high heels on my wedding day. No matter how pretty and feminine I feel in them, I know that they are the first class ticket to immediate spasticity and immobility.  I’m prepared to bring my support cane, or a walker to rest as much as possible. I’m prepared to advocate for my needs, as they arise, even if it seems a little unconventional.  We might just take a lot of sitting pictures. Or fewer pictures. I don’t know. I’ll know as the need arises. I might have to sit during part of the ceremony. That’s fine.

 This is a learning process, living with a disability, and I am fortunate to have the friends and family to support me through it. Whatever happens, in 9 days, I will marry the love of my life, my partner in all things, and my biggest encourager and supporter. And I am overjoyed.