Often these days as I lay in bed listening for abnormal sounds from Benjamin, I am flooded with thoughts about our children. There are times when I am sad for the reality and harshness of life that they understand on a daily basis. They talk of seizures and tumors and cancer as though they are commonplace and they have been trained on what to do in an emergency (in the rare chance they are alone with Ben when he has a seizure). These days they can frequently be heard having “seizures” as they are playing and describing them to other people who have not yet seen one in action.
Up until two summers ago I had tried to shelter them from the reality of life with cancer and seizures. Ben had only ever had seizures at night while in bed, so there was no reason for them to worry. Then while out on a walk with their dad at West Point one evening, Ben had a seizure and fell into the road. He and the twins were only about a quarter of a mile from home, but the strangers who stopped to help were very clear in the fact that my three years old understood more than I knew. They explained daddy had seizures and remained calm sitting on the side of the road with people they didn’t know while an ambulance came and loaded up daddy.
It must have felt like forever before I arrived to pick them up (and sadly I didn’t even get the names of the strangers who helped him in order to thank them properly later), but together the four of us drove to the hospital to meet the ambulance and check on daddy. After that night I began explaining to them more about seizures and what to do, but I also limited how often and how long I left them alone with daddy.
In November, they were ever so patient when we traveled to Texas and shared a hotel room for three weeks. When we left for Mexico in March, they wanted to know where we would be and what we would be doing. Whenever we would Skype they wanted to see and hear about what medicine and treatments daddy was doing. They wanted to know exactly how that was going to help him get better. We missed them every minute of the three weeks we were apart. Much of our days now are spent leaving them with sitters while we go from doctor to doctor or watching Netflix from the floor of daddy’s doctor’s appointments. They hang on to every word and will ask me about things when we leave there. They remind daddy of what he can and can’t eat; and they tell him when his cancer is gone he can have sugar again ;-).
They are also quick to forgive and eager to love… They know he doesn’t remember everything he tells them, and that he often forgets what he is doing. When he doesn’t remember something they tell him the bugs in his head must have made him forget. When he forgets the words he is trying to say, they hug him and tell him it’s okay. He isn’t always nice and he frequently yells, but they love him anyways.
So often I find myself unable to trust that things will turn out well, and unable to remain calm in difficult situations. If only my faith were as strong as that of a child, who has no reason to doubt in the ability of the Lord to change the situation for the better. So often I find my feelings hurt by others and unable to forgive, let it go, and move on. My children wake up every day and have forgotten the hurt feelings of the past and are able to love, and enjoy every day to the fullest! My prayer is that I would be able to see the world we live in through their eyes so that I will have faith and strength to handle all that comes our way.
I still worry that we don’t have enough time to spend with them and that they will not know how incredibly important and special they are to us, but I pray that even when we are not with them, that God’s hand would be upon them and wherever they are! Most of all, I thank God daily for the joy that they have brought to our lives. They are one of the biggest reasons that I am able to try to choose joy every day!
A journey with our family through multiple sclerosis and muscular dystrophy. As well as a look into our struggles and faith!
Being still for Caitlin Grace
The Joy of the Lord is our Strength
Finding Beauty in the Everyday.
Chasing Christ in the Chaos
Learning to Embrace the Storms of Life