10 Positive Things I Learned While Dealing With My Son’s Terminal Illness


In today’s society, it seems like a lot of us tend to focus on the negative. It’s easy, right? There are so many negative experiences that happen in our day: I hit a standstill in traffic on the way to work or they were out of that one item I needed at the store. My 3-year-old decided, yet again, he would pull out the markers from that high, out-of-reach place where I hid them — I swear, he’s a monkey — and make his skin blue, green and red! We see it on social media all the time about how things went wrong.

My son was 21 months old when he was diagnosed with high-risk pre-B acute lymphoblastic leukemia. We — it was a joint family and community effort — battled his cancer for just over three years, including two relapses and three experimental treatments, before we were told there was nothing more they could do.

Ethan passed away in October 2014, not even a month before his fifth birthday. Sounds like a negative experience, right? Well, it wasn’t something I would ever want to do again, and I wouldn’t wish it on anyone. But there were many positive experiences that came from being a part of this club we never wanted to belong to. These are only some of the positive things I have learned while dealing with my son’s terminal illness:

1. I realized the little things just don’t matter.

There are so many little things we worry about. So you have to run to one more store to get that missing item. At least you can get to the store. You’re out of time and can’t get a decent meal on the table. Oh well, leftovers, peanut butter and jelly or even cold cereal will do. In the grand scheme of things, none of this really matters.

2. I learned family is everything.

When you’re in a hospital and spend so much time away from your spouse and other kids, you realize how much you love them. The times spent together become priceless and irreplaceable.

3. I learned caring people can come out of nowhere.

Our family was the recipient of many anonymous gifts. Cookies on the doorstep, gift cards to a restaurant, money for Christmas, toys for our sick Ethan and his siblings and many, many more.

4. Because of all of these caring people, I learned I really can make a difference.

I understand a card in the mail can change a person’s day. A phone call just to see how things are going can let someone know I care about them. It doesn’t have to be big, but I can make a difference.

5. I have learned to be more empathetic to other people’s situations.

Sometimes, those of us with children with disabilities can get upset with someone who doesn’t understand our situation. The truth is, I didn’t understand it either until I lived it. Just as I don’t understand what it would be like to send my husband off to war or to live in a poverty-stricken country, I don’t fully “get it” because I haven’t lived it. We shouldn’t expect any more from others.

6. I believe I have learned to be more faithful and willing to accept God’s plan for me.

That doesn’t mean I wouldn’t give almost anything to have my Ethan back, but I have also seen the way he was able to touch people’s lives and change them for the better. And I have seen how this trial has shaped and molded me and my family into better people.

Jennifer VanLeuven the mighty.2-001

7. I have made many new friends the past three years who helped my son battle cancer, including other cancer moms and people in my community and throughout the world.

Our family had the opportunity of being in the media spotlight for a week or so preceding Ethan’s passing. His story was aired from China to Brazil to Australia. Because of this, we have had many people who we’ve able to keep in touch with. So many of them continue to be a source of strength and inspiration for our family.

8. I’ve learned that I can do hard things!

Life is hard, it really is. But I believe with God at my side, I can persevere and come out on top. Now those other challenges in life don’t seem quite as intimidating. Goals don’t seem so far out of reach, because I have faith in myself that I can keep going.

9. I have come to appreciate the kindness and sacrifices of loving doctors and nurses.

I have watched as doctors and nurses have nurtured and cared for my Ethan. I have seen them gently talk him into staying strong for yet another neupogen shot or make taking medicine into a game. I have seen them sit at his bedside so I could finally get something to eat. I have seen them cry with me while we faced other challenges at home and as we set up hospice for him. This isn’t easy for them. They could put up a wall so they wouldn’t get hurt, but they didn’t. They serve, they love and they care. They are heroes.

10. Last but not least, I have learned to enjoy each moment as it comes.

When your 3-year-old colors himself with markers, smile and take a picture. There’s someone out there who wishes their 3-year-old were healthy enough or even around to be mischievous. When you’re running yourself ragged to get your kids everywhere they need to be — I have seven kids, so I know the run ragged feeling well — be grateful you have them there to keep you busy. When you have those rare moments of family time or when you’re all together and happy, savor those moments and lock them up in a place you will never forget. You never know if you’ll get that moment again.

We each have a choice. Everyone has challenges they are faced with. None of them are easy. I would have never chosen to have to watch my child suffer for three years and eventually have to bury him, but we can either choose to see the silver lining or dwell on the negative.

Sure, there are moments we may need to break down and cry. There are times we don’t feel like we can take it anymore. But if we can pick ourselves up, dust off our pants and try to see whatever positives we can, it can heal us and give us strength to move forward. It can give us peace in the midst of a heartbreaking circumstance. It can show us the good in others and even the good in ourselves.


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