IFE IS NOT a journey you want to make on autopilot, because things can change in a moment. My beautiful daughter, Summer Joy, was born March 2, 1989. She had no major problems except for a two-to three-year developmental delay. She was learning, thriving in school, and taking no medications. Just like her name, she was full of sunshine and joy.
Then on May 25, 2002, our lives changed forever. This Saturday was filled with the typical things—shopping, eating out, doing laundry, planting flowers outside, having dinner, and then preparing for church the next morning. During Summer’s bath that evening, I ran downstairs to change the clothes from the washer to the dryer. As I passed the bottom of the stairs, I heard a dreadful cry that said to me, Summer is in pain; something terrible has happened! Mothers have a sixth sense that can distinguish the difference in certain cries, and this was one I had never heard before.
As I rushed upstairs to see what was happening, my heart was a bundle of fear and horror. The small stuff of life became insignificant, and the long nightmare of 911 calls, hospital visits, brain surgeries, and diminishing health began. My baby was crying with a headache. Her eye and the left side of her head looked red, but I thought it was from her pressing on it.
My heart was heavy—struck with panic and confusion about the situation. As I helped her out of the tub, she wouldn’t even let me dry her off. She ran and fell on the bed, screaming with pain. My first thought was to grab the bottle of Tylenol for her. When I got back to her room, she was standing at the television, trying to turn it off. With an earsplitting shout, she held her head and cried, “It’s too loud! It’s too loud!”
As I gave her the medicine, I noticed that when she looked at me, she was not focusing on my face; I knew something was terribly wrong. My husband, Tommy, heard the crying and came to see what was happening. Still crying, Summer told him her head hurt, and immediately she seemed to fall asleep. At first I thought she was just exhausted from crying, but then I realized she was unconscious.
What followed was a time of horrifying silence. Summer didn’t say another word or make another sound until after seven hours of brain surgery six days later.
During the last days in intensive care, Summer would cry out through her oxygen mask, “Oh, my God. Help me, Jesus!” She would say it so loud and with an attitude that I would try to quiet her so she wouldn’t disturb other patients. But someone nearby said, “It’s OK . . . I know she is going to be all right because she is calling on the right Person.”
Our Private Room
Days transpired before Summer was able to move her right side, but as prayers continued, the miracle continued. After nine days in intensive care, we were able to move her into a private room . . . and were we ever thankful! At last I could abandon the knotty couch I had been sleeping on in the waiting room and the chair by her bed. And most of all, no longer would I have to take showers on the seventh floor (even though that was a great shower), and no more swollen ankles from sitting and sleeping in a chair.
Now we had our very own room, full of stuffed animals and flowers. Best of all, we had a bathroom and couch that made into a bed. Shortly afterward, Doris Fuson delivered the best Italian meal ever. The world seemed almost normal again. I didn’t realize, then, that life would never be the same.
In August 2003, Summer and I were having a typical day at home. I had just prepared her lunch and she was eating from her tray and watching a DVD. Tommy was out of town preaching in Pennsylvania.
All of a sudden I heard her scream, “Help me . . . help me . . . help me!” After her surgery, when she would get upset, she had become a little more demanding in her tone. When you add in the drama of a teenage girl, well, you can have somewhat of a diva! I guess God knew she would have to be tough to make it through.
I ran in there to see her tray knocked over and she was in a full-body convulsion. I had never seen anyone have a seizure, so I wasn’t sure what it was. I immediately dialed 911 and told them, “Please hurry; something has happened to my daughter, and I think she may be having a seizure!”
I knelt down beside her and was screaming, “Oh, honey, what’s wrong . . . what’s wrong?” In between that, I was praying loudly and asking God for mercy. I thought the ambulance should have already been there, so I called again. They assured me they were on their way. There was road construction and they had to take an alternate route. I begged them, “Please hurry!”
Later I understood she could hear what I was saying when all of this was going on, because she said, “Why were you screaming and asking me what was wrong? I tried to tell you!”
I never screamed in her ear again.
The type of seizures that are specific to Summer are partial and generalized. The partials can either be simple or complex, and one presents itself with a series of loud screams, followed by panic, rapid pulse, loss of coordination, and right-side body contractions. She usually has an aura (warning sensation), and the transition back to a normal state can last up to one hour.
The other type starts with moaning and tremors. She fidgets back and forth, then she will go into a trancelike state for a few minutes. She drools, contracts, and is nonresponsive. She can have loss of bladder control. Then she will cough and start to recover. She has no recollection of this type. We handle her seizures the same—attend to her, making sure her airway is open, assure her that all is well.
Seizures cause a lot of anxiety, panic, fear, and stress for her. Her face loses complete color and turns gray. Her hands and feet perspire, and she feels a burning sensation (like a fire) in her stomach. Her mouth can also draw up at the corner. It is devastating to see your child go through something like this. She can have 18 to 22 seizures per month, even with the handful of medications she takes. I have to keep a separate calendar with the seizure activity noted. We are always on “seizure alert.”
Has life changed for the Propes family? Indeed, it has. We are unable to do a lot of the things we used to do, and that is sad to me. Some days, Summer just doesn’t feel well. She will even say, “I want Jesus to come get me now.”
Even though some things are new, our faith in God remains the same because He never changes. There are so many unanswered questions I don’t understand, but I have been raised to trust God. That’s what I do.
Women my age are, for the most part, taking care of themselves; or, if they do find themselves in difficult places, all the responsibility may not rest solely on them. That’s a good thing. Even though Summer is 24 years old, I still assist every day with bath time, her food preparation, and any other needs she might have. It’s like having a small child for a much longer period—combined with the drama and needs of a teenager. I realize there are reasons why we have our children when we are young! We need the energy for sure. Lattes and lavender-scented baths are simple things, yet sublime.
Through the years, I have been blessed to find good caregivers that allow me to do ministry with my husband or to just have special time together. I have said on several occasions that our date night included a funeral or a wedding. That’s pitiful, I know, but things are better now, even though we are always conscious of our situation no matter how far we go.
I’m so grateful for every moment and each person who has entered our lives. God has always provided that special one. Sometimes I find myself trying to ensure the future and end up like the children of Israel, wanting more than one day’s manna. But God provided enough manna for only one day. So I surrender to Him and let faith carry me through those times of uncertainty. And enough “manna” (caregiver) is always there. He is so faithful and comes through for me, and He will for you, too!
My Hectic Schedule
As hard as we try to have a regular routine, there are those days filled with anxiety and unexpected turns. When it’s time for me to give Summer the different daily medicines, my heart goes out to her because she will hold out her little trembling hand, but she takes whatever I give her with no questions, whether it is a Tylenol or a cup full of medicine. Such blind faith!
Each day is filled with new surprises, and we always have the possibility of a seizure and the anticipation of more to come. The anxiety of that anticipation clouds her day; however, we have learned to live with whatever happens. Sometimes the seizure passes, sometimes it doesn’t. We remember the funny times because it helps to take us through the not-so-funny times. With the Lord’s help, we make it one day at a time.
Like most of you, I have several electronic devices for quick access to my friends and the cyber world, but I don’t think I will ever be completely paperless. I must keep one calendar for a particular medicine for Summer, a separate calendar for her seizure activity during the day, and then a calendar with my schedule on it. Sometimes the days are too short. I feel like I’m constantly journaling and juggling things. Recently I read where journaling is like a farmer tilling the soil—only this is my life that is being tilled.
When I take time to jot down my feelings and current dilemmas, it is incredible to see the way feelings slip out the end of my pen with solutions to problems I did not know were possible.
As I’m writing tonight, she has just had a seizure and has not been able to keep any food down for about 24 hours except for Sprite and a few crackers. These are the dark times, the days when we hold on, believing God for our family and praying for a new day. It always comes. And with that new day comes new hope and the determination to keep striving for all that God has for us. It’s amazing what a good night’s rest will do for a tired body and mind. I used to tell my son, Matthew, “Things will be better in the morning.”
This walk of faith (sometimes in the fog) is difficult because we’re asked to believe what we cannot see. This means we often have to walk a dark path. My problem is that I like light better than the dark or the foggy night. If I can see what God is doing—how He is working everything together for good—then I don’t need faith. But still I want to see. This is not my problem only. We say we want more faith, but really what we want is sight. Sight says, “I see that it’s good for me.” God asks us to keep walking, because He is holding our hand.
I’m so glad I didn’t know the first 13 years of Summer’s life what would happen on that Memorial Day weekend in 2002. If I had known, I would have been overwhelmed with emotions, to say the least, and I would have been trying my best to find a solution. We cannot live independent on our own knowledge. That is not trusting God. And He asks us to cast our cares on Him because He loves us.