Are things ever going to get better for me? Is life always going to be this hard?
Have you ever found yourself asking this question? Maybe you’ve gone through a season or experience in life that felt like there was no reprieve from the pressure, disappointment, pain, or loss. I understand. I’ve been there.
When my second son was born, he seemed like a healthy, normal baby. But circumstances changed over the next few months. He didn’t gain weight. He developed colic and cried a lot. Then we began to notice that he wasn’t developing the motor skills he should be exhibiting. He could barely hold his head up, and didn’t try to roll over, creep or crawl on the floor, or even move around. By six months he should be trying to sit up on his own, but even with pillows propping him up, he could not stay upright.
The doctors were concerned, so they began ordering tests. We traipsed from clinic to clinic and specialist to specialist, trying to find some reason for his lack of motor skills. A year passed, and the number of doctors we’d seen, along with the medical bills, had piled up.
Meanwhile, I had gotten pregnant again and given birth to a daughter. So now, I was carrying a toddler who couldn’t walk, an infant seat with a chubby baby in it, along with a giant diaper bag everywhere I went. I was tired, my back hurt, and the demands and stress just kept piling up. The pressure I was under built and grew until I wasn’t sure if I could take any more. But there didn’t seem to be an end to my struggles in sight.
Eventually, the doctors found that my son had a heart murmur. Trips to Riley Hospital for Children in Indianapolis and one heart surgery later, he was on his way to recovery.
That was a hard time for me, one that I couldn’t have gotten through without the help of friends and family members who rallied around me and helped to carry the load.
Before that time I could not have imagined the levels of stress and strain that parents of critically ill children go through on a daily basis. My struggles were small compared to theirs, but having a child with special needs gave me some insight into the hardships of this special group of people.
I sat beside the parents of children with terminal cancer in waiting rooms at the hospital. As I walked out the hallways, I could see them sitting beside their children’s beds, offering what little comfort they were able to give. I saw them break down and cry when the pressure got too great. I received medical bills for tens of thousands of dollars for just a few days of hospital care for my son, and could only imagine what a bill for months of treatment might total. I knew how we struggled to find someone to watch our home and other children, and my husband took time off work while we traveled out of town to accompany our son to his surgery. To think of having to deal with those issues for months and even years is overwhelming.
When I wrote Holding On, I wanted to help people understand the intense stress that families of critically ill children must endure, and hopefully stir compassion for this under-appreciated group of people. Finding a way to make life work and meet all the demands becomes almost impossible, and parents must do this at a time when their child’s life hangs in the balance and their emotions are raw and ragged. It’s soooo hard.
If you know a family who is facing this kind of situation, give them frequent hugs and make some time to lend a helping hand. I’ve written an article listing some ideas of ways people helped us when we were in a similar place. They were life-savers! You can be a life-saver too!
Holding On was recently picked up by a publisher, and a second edition with a pretty new cover has been released. A portion of the proceeds continues to go to St. Jude’s Research Hospital to help the families of these precious children.