How To Be Helpful For A Family Of A Critically Sick Child When You Feel Helpless.

We all know parents that have received the devastating news that their child had been diagnosed with a life-threatening disease.   How can we be helpful for a family of a critically sick child when we feel so helpless? There are positive ways to be immensely helpful, and it might not be the way most people think.   When we hear the news, the first reaction might be calling to give our support or visiting the family. First, in most cases, this might not be what the family needs right now, as they are all overwhelmed dealing with their own emotions. Secondly, most parents will not ask for help as they are unsure of what they need with all the commotion surrounding this stressful situation. Below are some ways you can be tremendously helpful. Having been a parent with a sick child, I will give you examples of 5 actions by others that were extremely helpful to us during these trying times.

Our Story

Meet Benjamin!

Benjamin is the second youngest of the four boys in our blended family of 6. This story happened way before I met Frank, my now-husband. It was a hot summer day in August 2008 when I was coming home after being away for the whole week for conferences. I was excited to get home to announce to my son, Benjamin, who was 16 months old, that he would become a big brother. I had just found out I was pregnant.  My mother had taken care of Benjamin when I was gone that week, and he seemed to be feeling under the weather that morning.  When I got home, I decided to take him to the hospital to check even though I thought it was only the stomach flu. Indeed, it was only a virus, but when the doctor did his assessment, he found something strange and wanted the pediatrician’s opinion before discharging him.

Benjamin was a docile little boy and rarely complained. Even at a young age, he already wanted to please everyone. We ended up stayed the night. The nurses were taking his blood pressure every two hours without him complaining. I did not ask any questions, and I was in complete denial mode. Being a registered nurse myself, that night, I was just a mother. It seemed like I had lost everything I had learned from my last nine years of nursing.

The devastating news.

Early that morning, we met Dr. Shami, a new pediatrician at the hospital. He had a suspicion that Benjamin had something called “coarctation of the aorta.” That meant we would need to see a child cardiologist at the IWK (Specialize hospital for sick children) right away.

We left the following day, and that three-hour drive seemed like a blur. We met Dr. Wong that day, and after having an echocardiograph, he confirmed that our beautiful son suffered from “congenital heart disease.” His aorta, the most prominent artery in our body, was only 1mm wide and prevented the blood flow from going to his lower body. Benjamin’s heart had been working so hard that it had become slightly enlarged.  His blood pressure was very high in both his arms and very low in both his legs. He had to start a medication to help lower his blood pressure right away. He had no pulse in his legs. That would finally explain why he had such a hard time walking.

The next step was to schedule him for all these tests to prepare him for surgery. Yes, my healthy (so I thought) boy was going to have heart surgery.

The surgery lasted 5 hours, and I was thankful that it went very well. However, it was tough to see Benjamin’s little body full of tubes and in pain lying in an oversize hospital bed in ICU. When he first saw us, his blood pressure rose high that we had to leave.  They needed to calm him down and give him something to relax.

After a couple of days into his recovery, he was moving better, and the pain seemed more controlled. However, a couple of years following his surgery, he still had to go through many tests, doctor appointments, and medication for his high blood pressure.

Today, I’m so glad to say that Benjamin is 14 years old and healthy. He no longer needs medication but does need follow-ups and tests every 1-2 years. These are precautionary tests as his aorta could become narrow once again.

Make a Wish!

We were extremely fortunate that at the age of 5, he was granted a wish from the Children’s Wish Foundation. His wish was to meet Sponge Bob at Universal Studios.  This wish helped us grieve the time he has missed just being a kid. Unfortunately, he had spent his time being brave and undergoing all these treatments instead of enjoying his childhood.

Today, it only makes sense for our family to give back to our community and help support the Make a Wish Foundation grant a wish for a local child. If you want to help us out, please head over to our Make a Wish Fundraising homepage and donate. We also have an event called Ice cream for Breakfast at our small ice cream businesses to raise money on July 9, 2021.

During these difficult times, many friends and family helped us out in many ways. Below I will share 5 Ways to be helpful for a family with a critically sick child. These should apply to any situation. No matter what the sickness, these should be appreciated by the family.

5 Ways to be helpful for a family of a critically sick child.

1.Bring a Meal.

I could not tell you how much we appreciated everyone who brought us an already cooked meal for the entire family. Not having to think about making a meal the days we had doctors’ appointments or right after Benjamin’s surgery helped us tremendously. I was able to concentrate on making his journey less difficult.

I suggest bringing a casserole of something that the family can freeze. That way, they can use it whenever they feel it is the best time. Lasagna is easy to make, and most kids like pasta.

2.Help with the sibling afterschool activities.

Life needs to continue for the other children in the family. Offer to carpool or bring them to their school activities. This situation will also be a difficult time for them. Offer to bring the sibling to a museum or a park while the child is in the hospital.  

Nicholas wasn’t born when Benjamin was gravely sick, but I have seen siblings suffer in silence in the shadow of their brother or sister’s illness throughout my nursing career.

3.Help with everyday chores.

Our neighbors cleaned and shoveled our driveway when we left for Orlando for Benjamin’s Wish. In addition, some family members picked up groceries for us. My parents helped us with the laundry, babysitting, and general moral support. I will be forever grateful for them.

4.Be a ”Point person”.

Offer to be the point person. That person is responsible for updating other family members and friends about the child’s condition. It will take the burden of calling and receiving calls and causing more stress for the family.

5.Gift ideas.

If you don’t have much time to spare, here are a few excellent ideas for gift cards:

Gasoline gift card:

If the family travels for treatments, they will need money to travel.

Cleaning services:

My colleagues from work bought me a gift card to have someone clean our house while we were away to one for Benjamin’s follow-ups.  It was so soothing to come home to a clean house.

Final thoughts

These five ways to be helpful for a family with a sick child might seem minor, but they were so helpful for us. These gestures gave us more time with Benjamin and were exactly what we needed.  Unfortunately, most parents will not ask for help during these stressful times because they are unsure of their needs. Instead of asking: How can I help? Say: I’m going to bring supper for you guys. What do you feel like eating?  

Do you have any other suggestions or ways you have helped a family with a child living with a critical illness? We would love to hear from you.

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