As I worked to balance being in the NICU and being there for Demi and being a good wife, I took little moments to myself here and there, stealing time whenever I was running an errand for Demi. It was time to just think for a moment outside of the NICU without guilt. On Fridays, Demi had a gymnastics class from 4:15 to 6:30, and I would go to a nearby sushi bar there in Broadview Heights around the corner from our house. I told myself not to feel guilty. It was either sit for an hour waiting for Demi to finish, which meant I wasn’t in the NICU with Dakota but was worrying myself to death, or spend the time catching my breath.
One day, I packed a book in my bag, Present over Perfect: Leaving Behind Frantic for a Simpler, More Soulful Way of Living. It was a book my photographer friend Brittany, who took Dakota’s preemie pictures, had given me while I was in the NICU. I stopped at the sushi bar, ordered, and while sitting there at the counter waiting, I started reading Shauna Niequist’s story. She had made her life too busy and was trying to be too perfect; but she did not allow herself to be still enough to enjoy this existence. I was relating to her story in the first few pages.
I inserted my bookmark to be sure not to lose my page. I laid my book on the bar and picked up my cell phone and began to text JR: “Babe, I think I want to write, like really be an author because the more books I read it keeps nudging at me. When I read these different books I think to myself shit I can write too. lol what do you think?” I placed my phone back down and thought to myself, Shirley, what in the world did you just text your husband? He’s gonna think you losing it. I picked the book back up, and a few minutes later I heard JR’s text alert sound off. I was so anxious to read his reply I snatched my phone off the bar and read, “I agree!” I stared in a daze for a few seconds like something was waking up in me. I could feel what it felt like to have a sense of purpose. I picked up my book and kept reading.
God had put us through this for a reason, there was some purpose. Who were we to hold this moment in secret when there were other families going through the same thing and needing some light? My and JR’s social media family got to witness our struggle and hold vigil for us while holding out hope for their own children. I admit, it wasn’t just an act to help other folks like some martyr, I was also in need. That’s what community can be like, you need something and when you are providing for others you are fulfilling that need.
The blogging and social media posts started out as a way to keep talking to folks as if they were there in the NICU for 141 days with me and my family. It was a way to be grounded and not feel isolated. I didn’t know at the time that it was a way to connect across the country with families who were needing community and relief from the isolation as much as I was needing it. Making community just requires us to reach out, whether it’s to ask for help or to offer it or to vent and write our stories. From childhood to now, I have learned that the courage to write down my truth and to reach out helps me to see that I’m not alone, and I always find that God has put somebody right there to reach for my hand.
Dropping Jewels
Advice for Families Who Are Feeling Alone
It has been a big part of Black women’s history to construct community out of who and what we have available. Back in the day and even now, our families, our schools, churches, beauty shops, and more have Black women at the helm, holding everybody together as community. PopaAuntie and Mama Jessie played that role in my early life; Bishop Glanton holds that community leader position in my church; and I chose to create and hold space as that person in my NICU community in New Jersey by creating a nonprofit to help support families with preemies.
You cannot do the job of parenting a preemie alone. You and your family need support. It’s hard when you are going through the preemie experience and other folks are celebrating the full-term healthy births of their children. It can feel like you don’t have the community you need around the birth of your child:
Don’t isolate yourself. I felt closed in a lot of times, and it’s hard when you have to keep telling people the situation, but do just that. Tell people.
Try finding social groups or support groups for parents with preemies. In the Resources section at the end of this book, I leave you contact information for some support services. Even when you have support, it can feel like you don’t, because those who support you might not share the same experience. Find people who know the things you are going through because they have been through the same.
Remember that everything is temporary. At the same time that it’s a roller coaster with high highs and low lows, it’s also a reminder that the lows, like your baby getting a blood transfusion, are temporary. Know that if your baby is jaundiced, it’s temporary.
Don’t get too high on the highs or low on the lows. Try to stay grounded and stable so you are not anticipating the worst and getting anxious, or getting overly hopeful and getting anxious. Stay calm; every day is something new and you have no control, so try to keep yourself at a medium.
Remember most of all that it’s okay to not be okay and to reach out for community.
Part III
My God, My Faith
Sometimes all of the hustling and problem-solving in the world can’t get you out of the paralyzing grief of death, disease, and heartbreak, but prayer and faith can see you through to a better place. Looking back, my mother’s death took the ground from under me. What kept me from falling was the love of my faith community and my bishop. It’s like they had been woven in place just before the bottom fell out.
When Dakota was born, prayer and my faith in God and community surrounded Dakota in the NICU, and that brought us through. Prayer messages on social media lifted us. “I’m praying for Dakota,” “I’m praying for you and your family.”
My experience with the miracles of a faith-based life that is so strongly rooted in the women in my family helps me to know, even today, that prayer and faith in God can heal me. Prayer and faith can heal my girls, and the generations of moms and daughters that have suffered through these same issues, and it gives us a safety net when all else fails.
7
A Family That Prays Together
The first time me and JR and Demi prayed together was the night Dakota was born. She had been whisked away from the NICU, and aside from seeing her beady ant eyes and slipping into a place of mortal grief, I hadn’t seen her.
That first night, I was so sick and on so many drugs that I was high. I had forgotten about seeing Dakota’s eyes when she came out of me. Everything was like in one of those dreams where you skip around in different realities. I somehow managed to sit my sick-self up in the bed and was trying to have a casual conversation with JR’s teammates and their wives who came to visit me late after the game. They had all seen Dakota in the NICU, and I still hadn’t really. I looked at them all tall and strong in their workout gear, and they looked at me with IVs in both arms fighting infection but acting as if I was at the house entertaining like nothing had happened. I could feel their unsteady attention, afraid their words might make me crumble and turn to dust.
Looking back on it, I think a part of me didn’t cross over from the two quick pushes. I was still in the moment of Kawana’s and Ma’s hands touching mine on either side of the bed, the living holding on to the almost dead. I think some part of me walked with death that afternoon.
Into that night I remember JR’s tall shadow walking in and out of the room, going back and forth to see Dakota with his family. They reported back to me, but these were just words that floated above me. As the night went on and my brain started to feel solid again, not melted with fever, their words slowly had meaning. “She was born one pound. She lost a few ounces. She is intubated. She’s gonna make it. She’s gonna make it.” All kinds of fake enthusiasm was in their voices. Her stats were all they really knew. I wanted out of that bed to go help my baby.
And then a woman dressed ready for the office, in a suit, came with papers, asking if JR and I wanted them to revive Dakota if they lost her. I knew what
that meant. JR and I were both fully alert for that answer. “Come on now. She in here fighting! Don’t ask us if we want to give up on her. Do what y’all have to do to keep her alive!” Some part of me was just repeating these words from holding on to my own mother. That feeling of sinking inside my chest while she shrunk away and other people were giving up on her. That shit wasn’t going to repeat itself on me.
That’s when I said, “Take me to see my baby.” Sick as hell, I sat up. “Take me to see her.”
They poked for a new vein, hooked my IV of fluids and antibiotics up on the pole of a wheelchair. JR lifted me from the bed to the chair and they wheeled me over to see Dakota.
JR, Demi, and I looked in the plastic case. Dakota’s tiny arms and legs had little veinlike wires reaching for her, going into her, coming out of her, when she was only the size of Demi’s hand. I was frozen in a type of shock and could feel JR looking at me and Demi looking at him. I had heard the words “premature birth,” but I didn’t know shit, didn’t know what it looked like, didn’t know the trauma of seeing your child like that, alive but her body not fully formed, skin like gel, not looking real. Like humans can’t possibly be that small and be alive. I flashed to a childhood memory of my neighbor Mama Jessie in my East Orange apartment building showing me the newborn puppies in the bottom of her closet, and me seeing the hairless one and asking her, “Is that gonna be a puppy too?”
After a while of sitting there with my hand on the hard plastic of Dakota’s incubator, hoping to feel her kick like when she was in my belly, I remembered how I used to sing to my mother and I thought, Sing to her, Shirley. I started singing the “ABC” song, which rolled into the Barney song, and Demi started singing with me. Then, I remembered praying with my mother and told myself, Pray for her, Shirley.
“Father God, please camp your angels around Dakota and carry her in your mighty hands. People are coming against her and saying she will not live, but we know with you all things are possible. If it be your will please allow my daughter to survive. In Jesus’ name, Amen.”
JR and Demi bowed their heads with me. JR’s body was without sound but shook with tears. Our Demi was shell-shocked and confused. No child should ever have to stand in a moment seeing her parents falling at the force of a life-or-death struggle. She had been just like any little girl, saying mean things about her mommy bringing another little one in the world to take her attention away. I knew she was standing there thinking the words of her mouth had brought harm. JR and I held her hand, holding us in a circle, and I told her, “It’s okay Demi. It’s okay.” We just stayed like that with me praying, God, this is something we don’t know. We don’t know what to do, guide us. I prayed until the storm of grief passed us into the next moment and I begged them, “Y’all please wheel me back to my room.”
Those months in the NICU were a haven and a battleground for Dakota’s life as she endured more surgeries that sometimes fortified her fragile body and other times further threatened her life.
Dakota was two weeks old. It was January 17, 2017. I was so excited when it appeared that Dakota was gaining weight, but in reality, Dakota looked larger because fluid was gathering on her brain from a peripherally inserted central catheter (PICC) line. The PICC line was the smallest available for preemies but was too large for Dakota’s veins.
That morning, we met with the surgeon. It seemed like we walked through a maze of linoleum and doors and corridors forever before we got to the part of the hospital that didn’t smell like antiseptic with the sounds of beeps and of carts being wheeled across the floor. This space was more like an office building with wooden doors, neat tables, and chairs inside. The surgeon was a six-foot-tall man who commanded the room like Pop as soon as he walked in with his stern voice. He brought us into a little conference room with a wooden table, black office chairs, and carpet. He held a laptop close and said, “Let’s wait a few minutes for my colleague.”
I did my usual courteous putting everybody at ease, even though that wasn’t my job. “No problem. You know us, we don’t have anywhere to go.” He chuckled, but JR didn’t. It was a serious moment; I just needed to keep it light because I couldn’t stand to hear more bad news.
They told us that taking the old PICC line out and inserting a new PICC line was what was needed, but that required surgery, and since Dakota was fragile the way any baby bird is fragile, surgery might cause additional harm. They then said that without the medications the PICC line could provide, Dakota might die. I waited for more. I was thinking, What the fuck are you telling us two separate awful scenarios for? You are supposed to be telling us what you are going to do about her having the wrong damn PICC line. It’s not a solution to say you can fix it but either way she might die.
I’m not a weak person. By that time, I had faced so many life-threatening situations alone in my childhood and young adulthood. “Weak” was not even part of my vocabulary. I had survived abandonment and abusive relationships, but this was beyond overwhelming.
I just said it. “So can you tell us what you are going to do?”
He cleared his throat, shut the little laptop, looked at his colleague, and was like, “We actually have to ask you what you would like to do, consent to surgery or enjoy the time you have left with her.”
Like a fucking magic trick, out came those damned consent forms we were always signing, which were giving permission to do some new measure or permission to leave her be so she could stop suffering.
For somebody to be asking me if it’s best to further threaten my daughter’s life or to hope for the best, which meant she might die, was just too much. Who has to make those kinds of decisions on the spur of the moment? And constantly? I didn’t even have a grasp of reality or time at that point, because the new normal of the past two weeks of my life was a series of constant life-changing shifts.
I remember sitting in my fuzzy sweatshirt and JR in his workout gear. They left us alone in the conference room with a big wooden table. JR and I sat there picking at the outlets in the table rather than talking to each other. We knew the surgeon was milling around in the hall, getting other shit done, but expected our decision soon. We looked at each other in that stunned way that we did when Dr. Young said she might need to take Dakota’s unfinished little body from the harmful space of my body into the harmful space of the world.
I didn’t know what to do. I just reached across for his hand. “Babe, what are we supposed to do? I don’t even know. Everything is too quick.”
He wasn’t making eye contact anymore, and looked like somebody was pushing down on his shoulders when he said, “We said we was gonna keep doing what meant keeping her alive.” I knew that was right, and let go of his hand for the box of Kleenex on the table. He sat back quiet while I let the tears and snot flow, then I took a deep breath. “Alright. Let’s tell them to do the surgery.”
We closed the blinds on the little window of the room, and I held JR’s hands in mine and I prayed, prayed like I was in the pulpit. “Father God in Heaven. We know you are moving through us, know you are moving through our baby. We know your will is one of love and even when we don’t understand that your will be done. We ask you to be with us today, to be with Dakota, to hold her in our family, to surround her with your love and to help us be strong as a couple, strong as her parents.” JR and I were both sniffing then to keep it together, just exhausted. “Hold us in your light God.”
Before these impossible days of life-or-death stress, I had stood in moments like this and prayed by myself. Some of my tears were because I was so grateful in that moment that I was not alone. JR and I had each other, and I had a faith community that I had sought out early in life. My cousin Danica drove our bishop, Barbara Glanton, seven hours from New Jersey to Ohio, and she just made it to the hospital to pray over Dakota with us before they took her to the OR. It was so important for our bishop to be there and pray over our Dakota, because if things didn’t go the way we had prayed for them to go, we wanted her to be given back over
to God.
Thankfully, she pulled through the surgery. So tiny, but so strong.
In the midst of the storm came a bright day. After thirty-four long days it was finally time, time for me to smell my Kota Bear, time for her to rest in my spirit and, most important, time for her to lay on my heart. She was two pounds and thirteen ounces when she received my first touch. This baby girl who didn’t even have skin when she came into this world grew some skin on the nourishment of her family’s love, on her community’s literal food, on prayers that can’t be measured. It was like a great big weight was lifted off of my and JR’s chests and was replaced by the feather-light touch of this little brown angel. It was the blessing to let us know that no matter what came next, we could endure.
Me and JR and Demi got to hold Dakota’s skin to our skin. I know one of the things that helped hold her in this life was getting to feel our expression of love through our touch.
I sang, “Like the dew in the morning gently rest upon my heart.” My happy tears instantly started flowing and the chills I got spoke volumes. Next in line was JR, also known as Poppa Bear. When I tell you this man was skinning and grinning, I’m not exaggerating. I felt his energy, it was so vibrant and contagious.
Dakota looked like a little shrimp lying on her dad’s chest. I called my view of them a miraculous work of art because his tattoos surrounded her tiny body in such a unique way. She added another piece to the story that was already permanently written on his body.
When Demi got her turn, wasn’t nobody going to tell her nothing. In the photographs from that day, she is holding her sister in her arms with that look on her face like, Back up. She is mine.
We all had grown to understand and comprehend that it is the little things in life that truly matter, the things you can learn from and appreciate, the experiences that help us grow, and this was definitely one of them. And that moment would carry us forward.
Mama Bear Page 6
