When it can't be "All Done"

Nine years ago, 7.13.2009, was the date of the worst medical test we experienced with our then 1-year-old daughter. I wrote this essay in remembrance of that time. Some of this essay might feel chaotic and unbearable. It is how I remember those 18 months. Many of you joined us in prayer during this journey. Thank you. There are others here who didn't know us during this time. Either way, please know that God was right there in all of this. He cared. He carried. He taught. This time was hard, but it wasn't wasted. If you're in the middle of a trial, rest assured that He is there, even if you don't feel it...even when it can't be "all done."

My husband and I stood to the side of a hospital bed, watching helplessly as our toddler waved her arms to her sides, signing “all done, all done” over and over. Tears pricked as we worked to do something, anything, to get her to calm down. But what we wanted to do, we couldn’t. We couldn’t make it stop. We couldn’t make it be all done, no matter how much we wanted to.

We had spent the last six months in and out of hospitals and specialists, trying to find out why our little girl wasn’t growing. She had never been big, weighing a tad over six pounds at birth, gaining bit by small bit each month. Yet her size wasn’t a concern until she turned one. The standard labs at her one-year checkup came back abnormal. After that, everything changed.

Her pediatrician called us directly. We quickly learned that when the doctor takes time to call, rather than a nurse, life was about to take a sharp turn in an unexpected direction. “Dangerously low hemoglobin levels,” he said. “Pack a bag. Get to the hospital. Don’t waste time.”

I was eerily calm as I called my husband at work, relayed the message and began following the doctor’s instructions. My husband arrived home. We loaded our bag and our girl into the car and drove an hour to the hospital. I messaged a few friends for prayer as we drove. But I had no idea the road awaiting us.

That first hospital stay felt like an eternity. And a waste of time. The hospital staff seemed rough. With the insurance we had, we were forced to go to a hospital other than the one our pediatrician had recommended. He wouldn’t have access to us. Through the blurry days, our baby was bruised with an endless supply of needles. We tried to keep her routine consistent, having her nap in her jail crib. And yet, after several days in the hospital, all we had was the vague diagnosis of failure to thrive. They gave our girl a blood transfusion to increase her hemoglobin levels and we were sent home with the order to feed her as much as she would eat.

I was angry and confused. I had diligently breastfed my baby for over a year. She ate well. I fed her when she was hungry. But with a diagnosis of failure to thrive, I blamed myself. Who else was responsible? Her well-being rested entirely with me, and now we were being told to add cream, butter and any other fatty food to her diet. We were told to push her calorie intake. I discovered there are honey buns with 2,000 calories per serving. We were told to feed her chicken nuggets. All these things seemed unhealthy. But we wanted to help our daughter, so we listened.

And her hemoglobin levels tanked again.

Back to the drawing board. Blessedly, our pediatrician did some research and sent us elsewhere. We went to all kinds of specialists, some with a drive of three hours one-way. Money was tight. Even worse, we were grasping at straws. And here we were, admitted again, this time in a hospital far-removed from friends and family, succumbing our girl to a ferocious test that would last hours and require blood draws every 30 minutes.

And she was done. By now she knew the routine. She was at the mercy of merciless needles. Her cries would be shushed, but the pain wouldn’t stop. Her silent begging to be all done would go unheeded. And she saw her mommy and daddy standing to the side of the bed, doing nothing to rescue her. The nurses urged us to sing to her. Sing anything. Sing something. But I couldn’t. I knew if I opened my mouth, I would choke on my tears. So a nurse started singing the Alphabet Song. I didn’t join in.

I had told the staff that an IV port wouldn’t work. In the past, the ports had collapsed. Her tiny veins just couldn’t take the pressure of multiple blood draws from a single location. But the techs didn’t listen and put the port in anyway. After the first blood draw, the port collapsed. Then they tried to insert another one. Finally a nurse suggested a poke each time a draw was needed. It was the only way. Even though our girl was sedated, she woke up with each draw. We would work to soothe and settle her to sleep only to repeat the nightmare again. After it was over, we took her to the toy store and bought her a gift. It didn’t repair the damage to our hearts. Not even close.

That awful test came back normal.

Finally, well over a year after the initial blood test capsized our world, we walked into the office of a new hematologist. After our second visit with this specialist, we received another call, again with the doctor on the line. “I think I know what’s wrong!” she exclaimed. We turned sharply from the resignation of possibly needing to endure a blood marrow test, to hope for a probable diagnosis. The doctor explained there was only one blood test available to check for this particular disease. She ordered the lab. We would know in ten days.

Hereditary spherocytosis. Her case was severe. We would need to consider surgery for our then two-year-old, otherwise she would live a life full of transfusions. By this time, she had already received blood donations twice. The first when she was a year old, the second the day after her newborn baby sister came home from the hospital. Our daughter’s spleen was trapping and killing her abnormally-shaped red blood cells. If we didn’t do something, she would continue to be anemic. Her growth would be stunted. So we did the only thing we could. We scheduled surgery to remove her spleen. Her immune system would be compromised, but it was a risk we had to take.

With our toddler and newborn in tow, we headed to a research hospital three hours from home. This time, grandparents traveled with us, as did our pastor and his wife. We braced ourselves for the multi-hour surgery. While the morning was still dark, my husband and I signed papers stating that we were aware of the risks of surgery. That we were aware our daughter could die on the operating table. We silently rode the elevator to the surgical floor as I held our girl on my hip. The place was sterile and dull. We were admitted to the pre-op area. Then nurses took our girl, lying to her about balloons and coming right back. My husband and I fell for the lie as well. Like idiots, we sat waiting in the prep area for our girl to come back so we could kiss her and hug her and tell her we loved her and everything would be OK. But she didn’t return. With bile rising, I exited to the waiting room with my husband.

I nursed my baby when she needed. But mostly I was silent. And I was so angry at those nurses for lying to us. I felt jipped. What if something happened? What if she died? My brother had died when he was only ten. So death was real. I knew it could happen. And I knew from experience how awful it was not to say goodbye to someone who died. And I didn’t tell her goodbye. Those nurses stole her from me. And so help me, if something happens and I don’t get to see my little girl again this side of heaven, those nurses lied. And we vowed never to lie to our girl. And I am livid that those nurses lied to her, and to us.

The surgeon came in hours later. “Surgery is over,” he said. “Her spleen was enlarged to three-times its normal size,” he said. “Surgery was successful, and bonus, she got a two-for-one surgery, removing an unexpected hernia. Ha, ha,” he said. “Mom and Dad can see her when she wakes up.”

I went to the bathroom and locked myself in a stall. I sobbed, praising God for the gift of one more day. I sobbed some more, eighteen months of trial washing out.

We finally got to see our girl. We took turns sitting with her and staying overnight with her in the pediatric intensive care unit. She improved and was moved to the children’s floor. She continued to improve and was released.

The ordeal was over. But we were all changed. Before surgery, we got a rundown of the risks, but none of those warnings went beyond the surgical table. None of those warnings told us of the emotional scars our girl had. We weren’t warned of the severe anxiety she would face in elementary school. We weren’t warned of the rage she would need to conquer when she felt unheard. We weren’t warned of the damage childhood trauma brings. But we would find out.

She’s older now. Ten. She’s healthy. While still hovering around the first percentile of those pesky growth charts, she is strong and can do a flip twice her height off the double-mini trampoline at gymnastics practice. She is smart and excels academically. She loves to read and write. She enjoys art. On the surface, she’s fine. And yet, the trauma is there. It lurks and sometimes pounces. She can’t remember the details of her medical journey, but her body does. Anxiety, rage, fear, depression. All things scary to a child. All ramifications of trauma. All things that are necessary to dive into, to deal with. Because a healthy body needs a healthy mind.

It is hard to parent a trauma child. It is lonely. It is describing the sharpness of a rage episode and have a friend think of her child’s meltdown. But just like before, we are pursuing health. Just like before, my husband and I are beside her. We are in this together. Just like before, we will take the sharp turns together. We will press into each other.

We can’t make it be all done, but we will stay the course.   

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