What It’s Like — Living Life with DJ
A special needs mom’s perspective
My husband and I often get the asked “what’s it like to have a special needs child?” Our cursory review for an answer is never fully exhaustive, I mean, how can one go through the details of 22 years living and caring for a very need involved child? It would take days and it wouldn’t be very life-giving to the hearer unless we also shared the lessons we’ve learned and that would take another few days. Whatever we do end up saying usually gets a reply of “God sent his best to DJ” or “God knew you could handle all that” or some other remark that although may be kind really doesn’t provide any comfort. But then again, we stopped seeking comfort years ago. We simply have learned in this life with DJ that God is sovereign, DJ is the boss of our agenda and we have to live a very flexible life.
For those of you who don’t know our story, Daniel Jeremiah (DJ) was born nine years into our marriage, two years after his brother, Samuel Eliu. DJ was what is considered a “micro-preemie,” because he was born at 26 weeks of gestation. The first two years of his life was like living on a roller coaster never knowing when we would be going up or down or when a fast curve was approaching. He was in and out of the hospital and I often would joke with the hospital staff that they should put me on salary since I was always there and many times corrected medication mistakes that I noticed simply from the color of the syringe. I would write in my journal every day I was with him and even noted those mistakes. That proved to be worthwhile because it was one of the key instruments used to narrow down the time that made the most damage to DJ’s quality of life which was essential in the lawsuit we would bring against the hospital for medical negligence (which we won eight years after initiating it in 2007).
Three years after he was born we were told by DJ’s primary care doctor to go to a warm climate so that he would not have to go to the hospital so much. Hiram was packed mid-sentence. I, on the other hand, so set in my career, gave it all up for the sake of my child. That’s how we landed in Florida. At the time, it wasn’t so bad. The weather is good but then DeSantis. Yeah, I don’t like it so much now. I used to tell Hiram he was a fake New Yorker for being able to adjust so quickly. Twenty years later, I still don’t feel like I fit in much. But here I will stay until God either heals my son completely or takes him home.
Parenting a Special Child
Being parents to DJ has not been easy but he has also taught us so much in the journey and changed us in the process. I often express myself on social media about that and call him my silent prophet. I remember the day we were told that he would have special needs by the doctors in New York. I did not think I could love him like I already knew I loved my older son. But let me tell you, the love is off the charts. But we do live a life on the edge. Due to all of his ailments which include hydrocephalus, cortical blindness, cerebral palsy and a seizure disorder that as I write this has sent him to the hospital yet again (he has had five admissions since 2020 for a variety of things). Having a child that is unpredictable makes your life …unpredictable! Plans must be cancelled and often we feel like not making plans at all! But we reject living in resentment and that is why we do make plans even if we now have to buy insurance due to the likelihood of cancellation. We do squeeze as much joy out of the good moments we have and try our darndest to make sure we have date night every week, precisely because we know we are living in a liminal space. We are no strangers to liminal living as we as Brown folk live there all the time. But this liminality is not just about living between two worlds, it is living in a “transitional state of potential (in what direction will tensions be resolved?). However, elusive, ineffable, unstable, or hybrid, this fluid boundary space is not a “no place,” nor an abstract space, but particular, embodied, situated.”
Parenting a special needs child as involved as DJ is living life on the edge. The edge of life or death because DJ has taken us there twice. But life with this reality every day due to all his conditions. I have tasted the tears of having reached what I thought was the end of the rope. My heart has raced to the thought of losing my child at a doctor’s prognosis. We have been there and back. We have not lost him yet. In that, we have seen God’s sovereignty. He decides. But we still live there. In that liminal space. It is in that space that we have negotiated with ourselves and with God. In that space I have often told myself I will survive whatever comes while feeling like I am dying inside. I’ve also asked God to heal my son because “I know you have the power to do so. Can you do it already? Why does he have to go through so much for so long?” I have even told doctors, “that’s what you say, but God has the last say.” Being in that space is like a seesaw. But all the negotiations and words to self were needed for my own survival. “Sometimes uncertainty — or the ability to remain in a liminal position — seems advantageous. At other times, diagnosis brings needed support, and in other cases the refusal of diagnosis is important to survival.”
What comes to mind often with this roller coaster of a life we have with DJ is when in Mark 9:23–24 a father is asking Jesus to heal his son, if he can, who was suffering from seizures since he was a young boy. Jesus was a little insulted. ““What do you mean, ‘If I can’?” Jesus asked. “Anything is possible if a person believes.” Immediately the boy’s father exclaimed, “I do believe; help me overcome my unbelief!” We have prayed since DJ was born. I would get indignant with the doctors in the hospital knowing in my heart that I would walk away with a healed child from the hospital. Then I didn’t. After thirty surgeries and too many hospitalizations to count, this I know for sure, my husband and I embody the words of Marvin Sapp’s song, “never would have made it.” And we can certainly attest to what Dr. Renita Weems has written, “It is enough for me these days just to believe in believing.”
We know God has the power to heal. We know prayer is powerful. We hold on to hope on this side of heaven because that is what we as followers of Jesus have amongst all other things. We keep praying and believing even if sometimes it feels like we are believing in believing so we can hold on to hope that is what helps ups to enjoy the gift of today. As it has been said, “yesterday is history, tomorrow is a mystery, today is a gift from God, which is why we call it the present.” We have learned to enjoy the 1440 minutes of any God-given day.
Like many of the Latina women before me, sometimes I find it difficult to explain how I navigate this liminal space as a mother, wife, Jesus follower, and person who reflects often on theology. I am like Inez who feels God as a “sentimiento (deep feeling), a force that makes me move, which pushes me in difficult moments.” When I can’t move, when I feel numb, it’s that sentimiento that gets me up and moves me forward. No puedo decir mas nada (I can’t say anything else).
Parenting is not always Mothering
There are times when the primary parent for a child is not the mother. In our case, in his early years, while Hiram has always been a very active and present father, I took on most of the parenting role but as DJ became heavier and after two hernia surgeries with specific doctor’s orders not to lift more than ten pounds to avoid a third, Hiram has shifted into that primary caregiver role. But believe it or not, it isn’t without precedent. “Men can and today do perform primary parent, and, interestingly, the voices of fathers on parenting a child with disability have been better represented in recent disability studies scholarship than voices of mothers.”
Hiram is not just an amazing husband; he is a most magnificent Father. He loves his children who are so very different in his own unique way. God has given him a special grace to take care of his family in a way that he not only feels honored to do but in a way that I feel needs honoring. Understand that my husband is smart and kind and has so many giftings that for a long time he shared with the world around him. In this season of his life, he has chosen to put it all aside to be husband and dad. We decided as a family, he would be the one to go to the hospital whenever necessary but that also meant he could not have a regular job. I haven’t met a more selfless person.
Never Defined by Disability
When I was told that due to all the hospital negligence that occurred in my son’s first few months, he would most likely be disabled, my heart sank. Not only was I upset that God would allow me to go through that but more so, an innocent child. Me and God had it out a many times in those early years. Boy was my theology being shaken. I always say that DJ’s birth was the beginning of my rebirth. Every card that built the house I believed in came crashing down. I was struggling to find out not only what did I do wrong to deserve this (remember some of us grew up with faulty theology believing all these things were related to sin) but I also was trying to figure out who God was to me. All I remember though is telling God I didn’t want to be defined by my son’s disability, aka “the disabled child’s mom” or the “women with the scarlet letter (which is how I felt).” I remember praying to God “please do not let me look spent, be bitter or harbor resentment toward my son.” God has certainly given me so much in this area and I believe my life speaks quite the opposite. In retrospect, I believe I didn’t talk about this part of my life a lot because I didn’t see it as the only part of my life. However, I do think I should have.
Recently, a friend asked me if I would tell our story about having public ministry with a child that is disabled on his podcast. I said yes and God willing, Hiram will be on with me because there is no way I could do this journey alone. Watch out for that on my social media!
Shepherding those in the Shadows
Lamar Hardwick who I will be interviewing soon on my JustUs talks Facebook live show is the author of Disability and the Church. In the book, he talks about his own disability but also about shepherding in the shadows. I want to encourage pastors to pick up his book if you truly want to be an inclusive church and shepherd those who are usually forgotten and, in the shadows, because honestly there is so much left to be desired in the way church is available for people with disabilities. Case in point, during this pandemic we faced no one really was thinking “oh wow, we finally make church accessible to this population of people usually left out. Which is why the article about “Why Churches Should Drop Their Online Services” went viral for all the wrong reasons with this group.
One of the reasons why I would go to church without DJ after I stopped pastoring was because most churches could simply not accommodate him. Also, because I’m from New York and I didn’t want to end up in the front page of the Sun Sentinel because parents and the kids they haven’t had conversations with about special children were starring. This is also one of the reasons why my husband learned to cut my son’s hair. We really try to keep out of jail.
In his book, Lamar stated “pastoring special-needs families means having to learn to slow down long enough to help families through a lifelong journey of grieving.” That statement hit me hard. That is exactly what it feels like! He goes on, “Grief is not a destination, and likewise grief is not always an indication of a disappointment or discontent with how our lives have turned out. Grief in the lives of many special needs families is like an emotional and spiritual tax for loving and wanting the very best for their child.” Hiram and I had to label what we have been feeling, el sentimiento of God pushing us forward and a grief that doesn’t go away. But I also wonder, any pastors willing to slow down enough to love on families like us.
A Secret World
But mostly, parenting a child with disabilities is entering a world you never wanted to enter yet realizing that once in it, you get to become a much better human. Geraldine Renton, another mom of a special boy named Ethan puts it in much better words, she states:
“You are now in a secret world. You’ll see things you never imagined: ignorance, rudeness, and discrimination.
But you’ll also witness so many everyday miracles, and you’ll know it. You won’t think a milestone is just a milestone, you’ll know it’s a miracle.
You’ll treasure things most people wouldn’t think twice about.
You’ll become an advocate, an educator, a specialist, and a therapist, but most of all, you’ll be a parent to the most wonderful child.”
 Cynthia Lewiecki-Wilson, and Jen Cellio-Miller, Disability and Mothering: Liminal Spaces of Embodied Knowledge (Syracuse University Press, 2011), 2.
 Renita J. Weems, Listening for God: A Minister’s Journey through Silence and Doubt (Touchstone, 1999), 38.
 Attributed to Bill Keane
 Ada Maria Isasi-Diaz and Yolanda Tarango introduce readers to Inez, a Puerto Rican women in Hispanic Women: Prophetic Voice of the Church, (Fortress Press, 1992), 14.
 Cynthia Lewiecki-Wilson, and Jen Cellio-Miller, Disability and Mothering: Liminal Spaces of Embodied Knowledge (Syracuse University Press, 2011), 3.
 Lamar Hardwick, Disability and the Church: A Vision for Diversity and Inclusion, (Intervarsity Press, 2021), 127.