A Mother’s Day Tribute from a pediatric nurse

May 9

(Kevin Ambrose/The Washington Post)

The first time I worked on Mother’s Day, I saw the day through a different lens. My patient’s mother usually came in every morning after her night shift job and passed out on the hospital sleeper chair for a few hours. But that morning, she arrived wearing her Sunday best and her finest pearls. In her hand was a camera, and a satin dress for the baby. She wanted a picture with her daughter, and asked if we could do everything possible to make her look less like a patient and more like a “normal” child.

Her daughter was an 11 month-old baby who had been born prematurely. Her entire little life was spent bouncing back and forth between our hospital and a rehab facility, with her mom at her side. For the picture, we momentarily removed her intravenous nutrition lines, stripped off the hospital gown, and worked our way around the tubes and catheters to get the dress on. We briefly disconnected her breathing tube from the ventilator, and the mom held her in her arms for a few precious seconds, smiling with pride. I snapped the photo and we quickly placed her back in the crib and reattached all of her lifelines. The mom beamed at the picture, and a few days later she hung a print copy of it in front of the crib.

I guess I didn’t know what to expect that day. Maybe I thought that there was no worse way to spend Mother’s Day than with your child in a hospital, and why would anyone want to celebrate it in a situation like that? It’s typically a day for families to show gratitude to the mother. This single mom had no one to give her thanks, and her developmentally delayed baby didn’t have the ability to make eye contact, let alone give her a smile. But for her, it was a day to be thankful to be a mother–to be able to feel that love for a child who is yours. It was a different approach–the only approach she had a choice to take. And she took it with so much grace that it amazed me.

She is one of the many, many mothers I have come across at my job who have amazed me. I work as a nurse in a Pediatric Intensive Care Unit. Through the new diagnoses, the surgeries, the intubations, the pain, the resuscitations, the deaths–through it all–I have witnessed the powerful extent a mother’s love can reach.

I’ll never forget the mother of a young girl who was in her last days of life. Her disease had crippled her to the point where she had a fully intact mind but was trapped in a body she couldn’t move–with the exception of her eyebrows. To communicate, her mother would recite every letter from A to Z until her daughter raised her eyebrows at the letter she wanted to use. The mother would write the letter down, then start the alphabet over until she formed a word, and eventually a sentence. And like this, an unconventional conversation developed. It was sweet to see what the girl wondered about. One time, after more than an hour, we realized that she was asking how her brother’s date went last week, and if the family liked his new girlfriend (turns out they didn’t). Despite how slow and tedious this method could be, her mother never lost patience and did this with her, day in and day out. There is a Quranic term that comes to mind when I think of these mothers — “sabrun jameel,” which means beautiful patience. Happy Mother’s Day to these mothers who, despite the paralyzing circumstances of their sick children, endure everything with a beautiful patience.

And then there was that mother who went into her son’s room after he came up from yet another surgery. She was smiling, calm, and collected as she looked into his swollen eyes. She held his hand and told him how brave he was. After some time, I saw her leave the room, stand behind a pillar — out of sight from her son–and silently let the tears fall. Within a few minutes, she dried her face, put a smile on, and walked back in. She always remained this way in front of her son, never even letting her voice shake, and his spirits thrived off of this unwavering strength. Happy Mother’s Day to all of these mothers, who keep it together so that those around them do not fall apart.

There was the mother who knew that the end of her son’s battle with cancer was near. It was not clear exactly how long he had left, and so they remained in an uncertain limbo for months. She stayed with him throughout it, only leaving to go home for a few hours a week to do laundry. I’ll never forget her words– “I know what’s happening with my son. I’ve got my feet on the ground, I’m not flying. And I’m grateful for every day that he lives. Because every day he lives, it’s like a year to me.” And during those last days, she brought so much light to his life. There are other children who have chronic diseases with short life expectancies, and their mothers make every second count for them. Happy Mother’s Day to these moms, who must persevere through an uncertain limbo, all the the while bringing as much joy to their child as they can.

Another patient’s mother lost her husband and daughter in a tragic accident. She and her son survived, and every day since then her son has been suffering from his injuries. One night after a surgery, he experienced hallucinations and delirium, and she spent all night responding to every sentence and answering every question, no matter how little sense they made or how many times they were repeated. The next morning, she expressed how much she missed her husband and daughter, but she still felt grateful. “I don’t complain. I got nothing to complain about. God is good to me. I know He has His reasons for everything. I’m a lucky woman,” she said. I have seen so many mothers show this kind of positivity in the face of adversity. Happy Mother’s Day to these mothers, who experience the most trying of tribulations, and still count their blessings.

And there was that mother, who trekked back and forth between the adult and pediatric hospitals, tending to the needs of her child who just had an organ transplant, and her husband who was the organ donor. She was spread thin between the both of them. Ironically, she shared the same sentiments as other moms who have been in parallel situations. “Sometimes I can’t tell which ‘baby’ needs me more,” she quipped. It is no understatement that a chronic illness can have a polarizing effect on a marriage or family. I have seen mothers forced to ration their time, energy, and emotions appropriately but unevenly. Relationships undoubtedly become strained, but these mothers do everything possible to soften the strain and keep everyone content. Happy Mother’s Day to these moms, who not only work so hard to keep their sick child alive, but their entire family as well.

I can’t forget the time one mother was told that the treatment wasn’t working, and that there was nothing else that could be done for her daughter. The mother took the news with a heavy heart, and didn’t want her daughter to hear it yet. Little did she know, the teenaged girl had already spoken reciprocal words with her nurse. “I’m not getting better, am I? Just don’t let my mom find out,” she whispered. Since the day of her diagnosis, her mother had protected her from whatever distress that she could. Now, this girl accepted her own physical defeat, and was more concerned about her mother’s emotional defeat. Happy Mother’s Day to these mothers, who are such loving and nurturing guardians that it can empower the patient to become the protector.

There are the mothers who have to let their children go. I have watched multiple times as a mother witnesses her child getting rounds and rounds of CPR and finally realizing it has to stop. There are also the mothers who sign a Do Not Resuscitate document for their child, coming to the devastating terms that a peaceful death is better than a painful resuscitation. As a nurse, even when we understand that saving people doesn’t always equate to keeping them alive, it’s still so hard not to intervene as you watch your patient slipping away. It confuses your heart. One mom signed the DNR, but still cried to her comatose child not to go. Finally, one day, she told her it was okay to leave, and gave her permission to go with God. Her daughter passed away the next day, and it was the first time I saw the mother’s eyes without any worry. These mothers, who have had to let their children go and move on, carry an immeasurable void in their hearts. As Mother’s Day passes, some of them feel the void even more. But I hope that they also have sources of happiness, and that each year, the day is a little bit better than the last.

These are just a few of the mothers, and a few of their stories. I think about them often, inspired by their strength, but also wondering where they are now, and how they are doing.

In Islam, there is a well-known Prophetic saying that “heaven lies under the feet of your mother.” Under the exhausted, worn, aching feet of the mothers of sick children–feet that have trudged through unimaginable roads of grief–I hope for a heaven in which they can see their child in the healthiest and happiest of forms.

And for now, each Mother’s Day, I hope these moms have that special photograph–one that they can find a way to pose for with their child while they both wear their Sunday best. And if their child’s album is already complete, I hope that they can look back at those pictures with a smile, and feel a sense of peace.

 

 

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