Life After the NICU Might Not Get Easier, but I’ll Get Stronger


Being a mama of six kids, I feel like I just can’t cry. I don’t have the time to sit and cry. No matter what is going on, no matter how bad things get, I can’t cry. If I cry, I break. If I break then I’m done. And when I’m done, the day is done for me and for everyone else. And now that I am home alone with the kids, I can’t break. I am all they have. So I feel like I really can’t cry.

I was talking to another NICU mama the other day. Her son was in the NICU a few years back. And her son went through everything my son is going through now. We talked about how other parents don’t always understand, such as parents who have never lived in the NICU for weeks and months at a time, or have never made life insurance and funeral plans for their child, or have never wondered and prayed and held their child with the thought that this may be their child’s last breath, heartbeat, day and night on earth.

I asked her if it gets easier as time goes by. And she chuckled and said no. I hoped she was joking, but she was serious. She shook her head again and said, “It never gets easier.” She said, “You, as the mother of a warrior, will get stronger.”I think I may have had a slightly sad look on my face because she then started talking about how it is an amazing journey. Lots of good days. Lots of fun days. Lots of days where he is not sick. But the times when he is sick days or weeks at a time become familiar. They even become a routine of some sort.

I told her that I already have those days, days where there is no way for me to comfort him. She continued saying that the wait for a kidney transplant can be less of a roller coaster than the NICU. But the transplant roller coaster can have higher drops and scarier turns. She said she learned to just hold on for dear life. She said that as time passed, as the days flew by, as the weeks and months continued… life became a routine. Life was still hard, but she learned to adapt. She learned to read her son and know if he was going to have a bad day or a good day.

Despite of how hard life was, she got stronger. Life stayed the same. Nothing changed. Her son was sick and might not get better. My son might not get better. Currently there is no cure for kidney disease, and getting a transplant might be more like being in remission. But her son got stronger. She got stronger. And I know I will, too. I know my son will, too.

It will never get easier. You will get stronger.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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