On November 28th the year I was 21, during my 39th week of my second healthy pregnancy I was rushed to an emergency room. Something was going terribly wrong, I was being prepped for an emergency C-section while answering questions about resuscitation and next of kin. I was healthy, no risk factors, had a healthy baby girl by natural delivery almost two years earlier…but by the looks in the eyes of the nurses…and then came the anesthesia. . .
"We've given you six units of blood, don't worry, it's been tested for AIDS, it looks like you are going to be ok, but it was a close call" were the first words I remember when I woke. Then came the news, "we resuscitated the baby, we don't know how long he was without oxygen, he may not make it, but babies often recover better than we predict, so we will just have to wait and hope for the best."
We named him David. He lived in NICU (Neonatal Intensive Care) for three months before we brought him home. When he was released, it was not because he was well enough, it was because he was as well as he could get by medical treatment. I spent that first three months pumping breast milk using a cold metal and plastic machine, learning to insert a feeding tube through David's nose, how to tube feed, learning to measure and give shots on an orange, then into his leg…and then infant CPR. It was all very clinical…except for the part when I would hold him and rock him during the feedings. I would sing, and rock…and make sure I didn't spill breast milk I had made and preserved for the feeding tube…ok, that was pretty clinical too, but true love does not always feel like the warm nuzzle of a baby in your arms, sometimes it feels like a cold steel breast pump, a feeding tube, and a needle full of meds.
The NICU was full of babies, most of them were there because of addicted mothers. I never saw a parent holding most of those babies, but I had high hopes for mine because I was there, breast milk and all, learning to love with the aid of medical devices. After I was discharged, I tried to be there for at least two feedings a day, but the 45 minute drive to and from the hospital, and my need to see my baby girl just prevented me from being there any more than four hours a day. It was exhausting. It exhausted my body and my heart, but at such times as these, people become who they truly are. Some step up, others step out.
David had a severe brain injury because of oxygen deprivation. I had a separation of the placenta from the uterine wall, which was bleeding internally. By the time medical professionals believed me and took appropriate medical steps, David was dead…and then resuscitated. The prognosis was bleak. He was diagnosed with the severest levels of Cerebral Palsy and retardation. But we believed in miracles, so a diagnosis didn't carry much weight back then. We were naïve, young, strong, healthy, full of hope, and full of faith.
We were urged by medical staff to transfer David to the State foster care system and admit him to the state hospital for children rather than try to take care of him ourselves with no medical training. We toured the hospital where I saw babies and toddlers, and five year olds with contorted bodies, crying, even screaming unattended waiting for their turn to be touched, held, changed, and fed. It was a profound moment, with no real decision for me to make. My soul rose up with a loud voice that screamed, "Not only no, but OH, HEEEELLL NO! Not my child in one of these cribs!" So we took David home, believing for the miracles of healing, strength, and the help of other human hands.
The first two years were the hardest. David was so unstable medically. Even tube feeding didn't work the same every time. What worked one day, he couldn't tolerate the next. Thankfully, my mother and father-in-law helped. My father in law had been a medic in the army, so he helped me give David the shots he needed. There was so much to learn, so many medical problems that even the doctors had no answers for.
One dramatic night always stands out in my memory. Thankfully, much of the rest is now a numb blur, but this particular night…
I had resigned my business manager’s job at a small entrepreneur's design firm and taken a union job in a factory for the health insurance. I was working the 12-8 a.m. shift. I hated that place, the lack of vision and hope in the people, the dark smelly and probably toxic building…but love does not always feel like a warm baby nuzzling in your arms, so every day I prayed for strength as I punched in at the time clock, and walked the long dark corridor to the factory floor. I prayed, "God, please do not let me be here five years from now."
One evening by boss, Butch, interrupted my team and pulled me aside. Butch was an African American man, half bald. He was one of the smartest and nicest people in that plant, so I enjoyed talking to him as often as possible. He was not like the other supervisors who treated people with contempt as if they were pawns. Butch was as much a friend as a supervisor could be. I knew something was serious when Butch soberly directed me, "You need to go out the back exit and wait there under the streetlight until your mother and father in law get here. The baby got his hand tangled in the feeding tube and you need to put it back in."
I stood under the light with the panic most mothers don't ever experience, knowing this could mean death…waiting. The tube had been recently surgically inserted into David's belly. But the wound was still fresh, and the incision had not healed and formed scar tissue yet. It was like a fresh pierced ear, angry, red, irritated, except the hole was about the size of a pencil width. When I changed the tubes I had to make sure that I had the new tube prepped and ready to insert at the very moment I pulled out the old tube, or the hole would close, the surgery would have to be repeated, and David may die. So far, I was the only one of the four adults who knew how to insert a fresh tube. I waited under the streetlight, it had been about 30 minutes by now.
My father in law sped up and pulled under the streetlight so I could see. In their broken English they told me what happened. My mother in law held David across her lap restraining his flailing arms and trying to break his arching so the stomach muscles would not resist the tube insertion. They prayed out loud in Spanish and English. I batted back tears and panic so I could see and think as clearly as the darkness would allow.
After five minutes of streetlight nursing, we determined that a doctor, and sterile instruments were required to reopen the tube site. My in-laws told me, "You go back to work, we take him to hospital, you don't need to get fired." I stepped off the curb into the street as I watched their taillights disappear. They made perfect sense, of course, what more could I do but keep my job that night.
I was still standing in the street, watching the taillights in the distance when Butch's hands took my shoulders and gently guided me back towards the building, past the time clock, and down the long dark, dreaded corridor. His arm across my shoulders, and our slow methodical pace matched the tone and rhythm of his voice as he repeated slowly, it will be ok, you did good, they will take care of David." I don't remember the rest.
Most children learn to hold their bottles, roll over, crawl, walk, run, talk, read, and play. David learned to endure pain, therapies, braces, medical treatments, special equipment, slow drip feeding, and shots. He learned to cry, to moan, to arch over backwards when he was upset or happy…and to laugh. His Abuello (grandfather) was best at making him laugh.
Abuello and Abuella (grandmother) legally adopted David just before both of our (his parent’s) million dollar lifetime maximum health insurance policies were exhausted. Their military benefits took care of most of David's medical expenses, and they were eventually able to get insurance approval for 24 hour nursing care for David. When I became pregnant with twins, we moved David to Abuello and Abuella's house. It was excruciating to legally release him, and living with it required me to emotionally release him and focus on the two children in my house, and the two in my body. We didn't do it perfectly, but we were all noble, we were all brave, and we were all the best kind of superhero that ever lived.
It was five years and one month later, three days after Christmas that Abuello went down to the family room for one last tickle session with David before bed time when he realized David was not breathing. Abuello began CPR, the nurse called the ambulance. There was a blizzard that hit the Baltimore area that night. Somebody called me when the snow was about three feet high. It took three hours for someone to get to my house to care for the other four children (twin 3 year olds, an 8 and a 7 year old) before I could head to the hospital.
By the time I arrived at the hospital I had already received the news that David was gone. Hours had passed so my husband and his parents and their friends had already processed the initial shock and were discussing the practical things you must after someone dies, funeral, what clothes to give the funeral home, what toy to put in the casket…
It was a cold room. David laid on a table still intubated with the respirator tube. His body was cold and stiff, and his face was bruised from the CPR, but the large tube sticking out of his mouth, was all I could think of. As everyone else continued their planning, and comforting my in-laws, I asked someone to remove the tube. For some reason, they couldn't, and for some reason I couldn't think or talk about anything but that tube. David had suffered so much in life with medical devices, and discomfort. I don't think I cried. I just wanted to get that tube out and let him rest.
I went home and grieved alone.
Two weeks after the funeral I found out I was pregnant. I was not happy. I was overwhelmed, just buried a son, and had four lively children to raise. I was barely coping, and certainly unprepared to parent all these children well…I was just doing the best I could to do right, and to do my best. By the time I was 28 weeks pregnant and had adjusted to the idea that I was going to have five children …again. Finally the day for the first ultrasound arrived. I was almost excited because I would find out if I was having the long awaited little sister for my daughter.
As I prepared for my appointment I had a strange and familiar physical sensation that I could not describe. All I knew was that it felt "just like David." “It isn't pain, but neither was David's at first” I told the ultrasound technician as she moved the wand around my belly.
“It is a girl!” It looked like she was clapping her hands, and jumping in my belly when we got our glimpse. I was so happy, and so relieved that I cried. I knew that this child would bring comfort and joy to us all, and help us heal from the traumas of the last five years. My six-year-old daughter would be so happy, and I looked forward to another girl. "Everything looks fine! Congratulations!" I was thrilled,
The physical something I started feeling that morning hadn't gone away, so I called the Doctor. I was considered high risk because of what happened with David, even though I'd succeeded with a healthy twin pregnancy since then. The doctor couldn't find anything wrong, but I just didn't feel well, and I didn't want to risk the 45 minute drive back home across Baltimore. So the doctor sent me to the emergency room to have one more ultrasound.
It was in the emergency room, watching the screen that I saw it happen. The technician turned the screen away and called the doctor. "I'm watching the abrupteo placentae happen right now. The placenta has separated, she is bleeding we've got to take the baby."
Again I was being prepped for surgery in a frantic room. I was shaking, and cold, I think I was going into shock, this was all too familiar, and it hadn't come out well the time before. My body remembered, I didn't know it at the time, but I was experiencing a PTSD trigger of a previous trauma (Post Traumatic Stress Disorder) and my body was afraid. Odd as it seems, my mind was not afraid. I was pretty rational…or maybe that was denial. But I was thinking, "David had suffocated over 12 hours, his brain was damaged. This child will be out before she suffers brain damage, everything will be ok, it's too impossible for this to happen twice…" The questions of next of kin, the permission signatures, the cold, red betadine wash…and then the anesthesia.
I woke up with staples from my pelvic bone to my belly button, no baby in sight. "Your baby is 1 pound, 13 ounces. She is on a respirator, she is not breathing on her own yet…we will have to watch and wait.
I sang over her incubator. I sang for all the babies whose parents didn't come. The nurses didn't mind it. When I sang, all of the babies were calmer, their oxygen improved, their heart rates improved. I made an audio tape for Priscilla. I left it playing in her ear when I wasn’t in the nursery after I got discharged, and when I went home to sleep. Church families took care of our other four children while I stood watch and prayed over Priscilla for 34 days.
Thirty four days later, I got to hold her for the first time . . . Silent tears flowed down my face as I tried to sing . . . then heaving tears. I could feel the angels in the room, waiting silently, compassionately. Finally, I held my breath as she drew her last breath. Then the angels came and carried her away she was gone.
I left the hospital with empty arms, and the names of a funeral home and a cemetery who were willing to take care of my baby.
We all had nightmares. My three year old twins woke screaming most every night, "Mommy, just go dig her up!" We all knew David was sick, the kids even seemed to understand it when David died six months earlier. Going to "live with Jesus where he was all better, and could run and play" seemed like a good thing. But this did not, and something in all six of the rest of us was crushed beyond repair, beyond explanation, beyond hugs, beyond words, and beyond prayers.
For the second time in one year, we lowered a little white casket into the ground. I went back to see it after the children had been taken away, to throw in the petals of a crushed rose…just to make sure I couldn't wake up and make it all better.
A year later, I was still standing in front of the freezer with the door open, trying to figure out what to do with those 121 little bottles of breast-milk. I kept them as long as I could . . . thinking someday, it would feel better to decide. Eventually, when we moved from that townhouse, I was forced to throw them away. I thought, “This too is love, as so often love does, it hurts, because I am doing what is best for someone else in spite of what is painful or broken in myself.”
There is no nice bow to wrap around this story. I still cry. David would be 29 now, and Priscilla would be 25. As time goes, the waves of grief crash less frequently, than did the tsunami of the first days of tragedy and loss. I think of the grief as an actor in a play. Sometimes the pain is front and center in the middle of the scene, obvious to everyone . . . and sometimes, it is in the back stage, just waiting for its opportunity to emerge again.
The only thing that makes this kind of crushing feel better is to use it to benefit to others so I have decided to "never waste my sorrows." So let me share how this has changed me other than the deep sorrow that rises like the high tide every May-June and every November-December.
Love is performing therapy on your child while he screams, giving a shot, training him to eat vegetables, do homework, obey, listen, and be kind. Love is when you train your child to hold doors open, help others, and have self-control. Love is working to provide food and shelter for your family, and for others who cannot provide for themselves. Love is being available to model these life lessons. Love is an action verb, demonstrated in behavior.
I have learned to love through my brokenness, just as I have learned to sing though my tears. Love is a choice. Even though you are broken, and don’t do it perfectly, you DO love as much if not more that you FEEL love. Love is not a feeling, love is how you chose to behave in someone else’s best interest at least as much as your own, and sometimes it hurts. Love does not always feel like the warm nuzzle of a baby, sometimes it feels like a needle full of meds. Love broken, though you be broken, and cannot love perfectly, love broken.
And yes, love is that warm nuzzle too, that deep look of compassion into someone’s eyes, that lingering hug, those soft words, and that soft, almost inaudible groan that someone makes when you give a much needed embrace to a hurting heart.