I imagine a picture of my face, with my daughter’s medical record number hanging in some administrative office at NYU Hospital in New York City. A comment at the top of the picture reads- “This Mom accompanies the patient with this MRN#. Admit at your own risk.”
It’s been a rough year for my daughter on top of a difficult year prior. Jo’s had a lot of surgeries, infections, and issues with complex wound healing that has caused her significant pain, and a decline in her motor and communication skills.
Despite renovating our home to be more accessible for our daughter and the needs of our growing community of people with disabilities through our non-profit, Johanna’s Hope , we are scrambling to stay ahead of our daughter’s changing needs.
Jo’s lost most of her ability to ambulate on her own, so we transitioned her from a walker to a stander so we can wheel her around the house in a device that allows her to stand for longer periods and transition easier to different places to sit, including her wheelchair. She struggles to hold her body at midline and tilts a lot from side to side, so bright green positioning wedges can be found in nearly every room of the house, standing at the ready to keep Jo from falling over.
She’s also been in and out of the hospital a lot, most recently with blood infections that came on gradually until they were suddenly emergent. As I write this, we are waiting to schedule a bone biopsy as it appears the infections may have traveled into her bones, causing fevers, fatigue, and a tremendous amount of pain.
Unfortunately, even a world-class hospital like NYU is not well-equipped to handle adults with special needs. I’ve started having some conversations with doctors, therapists, and administrators in hopes that NYU will become a leader in making healthcare more accessible and comfortable for people with disabilities. But right now they fall woefully short, thus causing what we frequently call my “mama-bear instinct” to kick into high gear to ensure Jo gets what she needs.
The frequent visits, surgeries, and chronic wounds have caused my patience to wear thin. I also think that there’s something to the fact that the older you get, the fewer inhibitions you have about telling life like it is. I find myself living out Johanna’s description of me:
“My Mom prays a lot and swears a lot. “
There is so much truth to this statement.
I pray a lot more than I ever have and I swear more than I used to — maybe because I’m going to be 60 and because ignorant people who don’t understand or care about my daughter’s needs, just piss me off.
On the last admission, we rushed Jo to the emergency room because it appeared she was going into septic shock. When they finally stabilized her, the conversations began about how and where to admit her.
That’s when the lack of understanding of her special needs came to the forefront. The Department of Neurosurgery understands my daughter’s complex needs both medically and cognitively, but general medicine and other departments do not.
As Jo was falling through proverbial cracks, my instincts to protect her and advocate rose up as my frustration increased. By the time we were finally in a room, it was just hours before dawn. Jo was finally asleep and I could barely stretch out on the makeshift recliner. Comfort for caregivers is as much a patient need as it is for the people who care for them.
As I tried to sleep, I found myself recounting all the tense conversations with supervisors, doctors, nurses, and hospital advocates who I’d yelled at, throwing the f-bomb into almost every conversation. I felt like I was replaying another woman’s angry voice in my head and she wasn’t shutting up.
I prayed as I went to sleep, asking the Lord’s forgiveness for my swearing, and also to keep my passion and strength so I could advocate well for my daughter’s needs. I finally fell asleep just before dawn and only hours before doctors rounded in Jo’s room.
The days following proved to be among one of the most difficult hospital stays we’ve had in over 25 years since my daughter was diagnosed. It was a combination of being placed on a general medicine floor with high acuity and less nursing staff and a substandard level of care because of a lack of understanding and compassion for my daughter’s disabilities and special needs.
Unfortunately the f-bomb continued to be a part of my conversations as I advocated for my daughter. However, I think it proved mostly effective because I use it judiciously and not in everyday conversations. In the end, she mostly got what she needed and we finally made it home to be with the rest of our family who came to visit upon Jo’s return.
Motherhood is not for the faint of heart and is also one of the most rewarding vocations a woman can choose. It’s tiring and inherently valuable work to birth and nurture another human being.
Most mothers will admit that motherhood is a lifelong vocation that continues long after our children have left home; they never leave our hearts.
Motherhood for a child with disabilities is more than a lifelong vocation; it’s a daily call to love that stretches your heart beyond imagining. Many of us continue doing tasks that moms of typical kids leave behind when their kids hit school age —showering and toileting and feeding young adult children with disabilities continues long beyond the typical age of most kids.
Recently I started referring to this vocation as “perpetual motherhood” — not in a depressing way but in a devoted way. The flip side of the long-standing tasks of this perpetual motherhood is we get to enjoy the fun things we did with our young children over and over again and sometimes we get it right! Exploring nature, feeding chickens and hanging with goats, watching old Disney movies and a reading favorite children’s books keep life light when the days are long.
In the midst of the long and tiring hours of advocacy for all the things the rest of us take for granted as basic needs and respect, there is a simplicity of life to this perpetual motherhood that brings great joy and meaning to every day.
Advocating for another human being’s right to live life with respect and the care they deserve is a beautiful vocation and one that I would wholeheartedly choose over and over again.
It is simply profound.
Loving and caring for an adult child with special needs takes a special kind of motherhood.
Today, I want to honor my sisters who tirelessly (even though we do get tired!) embrace this vocation everyday of their children’s lives.
I see you and I feel your struggles and your joy. You are enough and you do enough — even when you lose your cool and drop the f-bomb as you advocate for your kids.
You are kind and beautiful and resourceful. And I promise you will have what you need to live this life of perpetual motherhood if you take it one day at a time with the grace of God given you.
Happy Mother’s Day to all you Mamas. ❤️
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