leo-mgh-7-6-16Most days I do what all parents do — put one foot in front of the other as I navigate working, managing a household, raising children, and taking care of my emotional needs as well as my husband’s and kids’. Business as usual.

However, things recently got stickier. I never thought I would be that mom in and out of hospitals and doctor appointments with my son. I never thought I would be that mom who held my 2-year-old’s hand while he had two blood transfusions. I never thought I would be that mom who kissed her son’s head and said, “I love you,” as he was going under anesthesia.

But suddenly, I am that mom.

And while it seems the worst is over, I’ve learned a lot about being my child’s advocate in the medical field. Leo has had two blood transfusions, one colonoscopy, one endoscopy, a Meckel’s diverticulitis scan, and, finally, a “camera endoscopy,” in which a tiny camera takes thousands of pictures as it travels through the small intestine. Here are a few of my lessons learned.

Lesson 1: To be your child’s advocate, you must also be a detective.  

In search of a diagnosis, we made many stops — the pediatrician, Newton-Wellesley Hospital, Mass General, and Children’s Hospital Boston. Instead of waiting for phone calls, anxious parents can view lab results online. Getting and recording these results brings you into the process. Once my journey included multiple doctors and hospitals, I realized I had to keep telling the story over and over. Although the professionals listen intently, they do not always communicate with each other. I had to step up and act as the liaison between all the groups.

Frustrated that they were missing something, I created a spreadsheet of the key labs (hemoglobin level and stool sample). And guess what? As in the CSI shows, that spreadsheet helped me see a pattern in the numbers. The professionals had missed something.

There was an initial test months before that indicated my son was positive for C. difficile, a nasty bacteria. But it had not been treated. Once I pointed that out, doctors immediately tested again. He was still positive. For eight months, the bacteria had been left to its own devices. Because of my sleuthing, Leo was put on strong antibiotics for the first time. Since then, his stool has been negative for blood and his hemoglobin levels are steady. Hooray for mom!

Lesson 2: Ask questions, again and again.

No question is too little or stupid. Make the doctors explain in real language. We are lucky to live near the top hospitals and doctors in the world, and they want to help. The doctors who took care of Leo were happy to call me back on a Friday at 5 p.m. and spend 15-30 minutes talking on the phone with me. I researched medical topics on my own and called whenever I had a question or idea about his progression. I advocated for my child by asking questions and not feeling that the doctor’s time was limited. For explanations of test results in plain English, you have to do your homework. Ask, ask, ask!

Lesson 3: Never doubt that your child is brave, strong, and resilient.

When we started going to the lab to draw Leo’s blood, he shed a quick tear, but now he is a pro at giving blood! He sticks out his arm and barely flinches. It is harder for a parent to watch a child go through something like this than it is on the child. We were good at distracting Leo with the iPad, movies, and lollipops. Also, remember that a toddler will usually not remember the details — the clean-out before a colonoscopy nor the feeling of waking up from anesthesia. We just have to hold his hand during the process and let him know we are there for him. That is the feeling he will remember.

Lesson 4: I can do more than I give myself credit for.

During this whole ordeal with Leo, we still had to care for Maya, our 3-month-old daughter, who is exclusively breastfed. Luckily, I have a good supply and stash and Maya takes to bottles very well. I pumped during the day at the hospital with Leo and did night feedings while my husband did hospital duty. There was one moment at Children’s Hospital where I was hooked up to my breast pump, while comforting Leo who was hooked up to his blood transfusion — talk about maternal multi-tasking!

Lesson 5: I started the “I am lucky” list.  

When we are going through the procedures or transfusions, I have to remind myself that we are very lucky for:

  1. Wonderful and supportive family that took care of Maya, brought us meals, visited Leo in the hospital, and sent Leo presents during our time in the hospital. It does take a village.
  2. Amazing health insurance. All the procedures are covered 100% by my health insurance.
  3. A happy boy! Leo is funny, social, and energetic. He doesn’t make a fuss over getting blood taken and even flirts with the nurses.
  4. Child-life specialists — a profession I didn’t know anything about until we were in the hospital. They provide support and guidance for families and age-appropriate toys and books for kids.
  5. Doctors. We are very lucky to live in a medical hub where the top specialists work. I met families that traveled across the world to be treated at Boston Children’s Hospital. I trust my son with these doctors.

Our story isn’t over. We continue to advocate for our child and monitor him daily — blood levels, pain, levels of energy and appetite. Today, Leo is a normal, energetic toddler. He is social, happy, and, most importantly, he is developing cognitively very well. But from now on, I am the kind of mom who muddles through the daily tasks with a new sense of awareness, caution, sense of responsibility — and pride in my own perseverance.

headshot-esther-cohenEsther Cohen lives in Natick with her husband, Jonathan, her 2.5-year-old son, Leo, and 6-month-old Maya. She is a working mom, commuter into Boston, juggler of logistics, and manager of her household. Esther loves wine and chocolate (especially paired together), traveling, and enjoying time with family and friends. She lived in Israel for four years and established the first wine tour company in Israel called My Israel Wine Tours. Esther loves being a mom to Leo and Maya, but on a daily basis will sigh and think, “Oy, my life was so much easier without kids.”