Guest Post from Andrea R. To read more from Andrea, go here and here.Every morning I wake up and wonder if E has died in the night. I walk to his room and listen, waiting to hear the sound of his labored breathing and cough and hoping for silence. He coughs, and I go in to suction the secretions that have pooled in his lungs in the night, change his diaper, and prepare him for the day.
E suffered a brain injury at birth, and at first we didn’t fully realize how extensive the damage was until he didn’t meet his developmental milestones and began having seizures, sometimes hundreds a day. Five years later, we have a pretty good picture of his condition. As a science teacher, I know enough anatomy and physiology to be dangerous. I know that the primitive part of his brain, the part that controls his breathing, heartbeat, and body temperature, the part that gives him his cough, sneeze, and gag reflex is intact. He has lost the ability to swallow, and is fed through a tube in his stomach. But, the higher part of his brain, the part that gives him memory, language, vision, and perception is mostly gone. I have seen his brain scans, and I know what should be there and isn’t. I have enough medical knowledge to converse fluently with the doctors, nurses, and therapists in the medical jargon they all use.
So, we take care of him the best we know how. He gets three different medications and a special diet to control his seizures every day. He gets three anti-spasticity drugs to keep his limbs from stiffening so that we can dress and clean him. He gets another medication that is supposed to dry up his secretions and counteract the other medications that increase his secretions. He gets four breathing treatments and two sessions of percussive chest therapy a day to keep his lungs clear and keep him from getting pneumonia. He gets six feedings via his g-tube every day. He gets physical therapy, occupational therapy, and special education every day to stimulate his brain and his body and to give him the fullest life possible. He is repositioned often so as to avoid pressure sores that could lead to a serious systemic infection. He sometimes laughs, sometimes smiles, and sometimes cries. We don’t really know what he perceives. Sometimes he smiles when we talk to him, kiss him, and hold him. Once, his nurse asked us if we sang “You Are My Sunshine” to him at home, because he smiled and laughed when he heard it at school. It is a song that we have sung to him all his life.
Because of the experiences we have had with E and with the understanding I have of microbiology, I know what will most likely take him in the end. It will either be a massive infection due to a pressure sore or an infection that has entered his body through some other open portal, like his g-tube. Or, it will be pneumonia due to the pooled secretions that he will eventually not be able to cough out of his lungs or from fluid that he has aspirated. Or, it will be a massive seizure that stops his heart. I hope for the seizure, because in my mind, that seems to be the most merciful way for him to go. We have spent enough days in the hospital with pneumonias, surgeries, and seizures to know that having him go while he’s at home and comfortable and not bothered by tubes and treatments would be best.
We have had five years to wrap our heads around the idea that our son will not live to grow up. We have grieved the child we lost, we love him for who he is now, and we long for the day when we will know him as a perfect, resurrected being. We know that our family will be together forever. We pray for a merciful Heavenly Father to take him home so that E can continue on his eternal progression, unencumbered by the imperfect biology of this life. And every morning I wake up and wonder…
Thank you. This piece feels like it’s touching something vibrant and raw. Many years ago, I read this piece from the Wall Street Journal and it stuck with me . . . enough that your piece brought it back to mind.
The Power of the Powerless
Thank you for this. I appreciate the way you tell the truth of your son’s life, with the tension of having him slowly dying, and also the tender way you care for him. I love that he responds to “You Are My Sunshine.”
Thank you, Andrea.
Even those of us who think your story is yours alone, some of us may face a shadow of it someday, pausing outside the room of a parent or spouse, mourning a loved one who is slipping away and looking forward to the day when we will greet them again, themselves again.
Thank you for sharing this, Andrea.
It sounds like you guys are doing a great job!
No one could possibly understand what you face everyday. You did a great job of sharing it in such an intimate way.
I have only watched similar situations with 2 close friends of mine. I found it a gift for me to help these mothers with some down time by taking these special needs little ones for short time periods.
It is so exhausting and unrelenting on the family both physically and emotionally. There is no choice but to survive your daily battle. Can you imagine not understanding the things you do. It is so surreal to have a special needs baby and the doctors and nurses just stare at you with this dumb look. “we just can’t really tell you much. We aren’t sure and we just have to say something medical to pacify you for the moment.” It all unfolds and before you know it, you perhaps know more than the medical community about your baby.
My heart goes out to you, words are not sufficient to express the feelings that truly go with your story.
pjb
Andrea, this was beautifully written and very moving. My heart goes out to you. ‘Thank you for sharing.
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I can only second what Tiffany (#6) said.
I want to thank everyone for their comments. I think everyone has hard, crappy things to deal with in their lives, and E’s condition is one of those things for us. I appreciate Maralise and Segullah for giving me a space to express how I feel about this — it’s been very cathartic. Some days with E are good and some are hard and bad, and some days I hate myself for hoping that he has died in the night. (Who hopes their kid will die??) Coming to terms with a child with a disability is a journey, and I thank you all for allowing to share a bit of my experience.
Thank you and God bless.
Very thought-invoking and beautifully written.
Andrea, I don’t think it is terrible for you to wish for the pain and suffering of your child to end.
I hope you understand what I am going to say here. On a recent Reba McEntire cd, there is a song where an old man has to put his wife in a nursing home because he can’t care for her. His anquish as he watches her pain and suffering and the loss of her personality is really poignant.
No one wishes to see loved ones suffer. While we cling to life, death can be a tremendous blessing, a release for all concerned.
What lovely words. Thank you for sharing them with all of us! I’m sure the challenges you face have brought you new strengths you didn’t know you had, new peace, new reasons to turn to the Savior. I hope I can rise to my own challenges as gracefully as you have shared with us.
Andrea, thank you for this gift of honesty and expression.
Darn you, though, for making me weepy. The first time and the second time I read it.
Kathy,
So sorry to make you weepy — does it help if it does the same for me?
ha! Actually, it does help. Because the thing that makes weepiness sweet is knowing it’s a shared experience. Every time I have a mother-cry it’s just one little part of a great whole.
I cannot pretend to understand the acceptance you have made to the differences in the life of your child, yet as a mother of a child who shares in some of those difficulties, I can relate to the feeling of knowing the limitations and differences.
Wonderful, yet difficult words. I just joined the weepy crowd.
Your story has touched my heart. Three years ago I lost my sweet 9 month old daughter very suddenly and unexpectedely. I know many parents lose children, but the pain is so different for each due to circumstances, yet the same. Thank you for sharing yours. A similarity we share is that I too would sing “You Are My Sunhsine” to my sweet baby, probably every day. So when I read that part in your story waves of memories and emotions flooded my soul. I recall when I would sing the ending . . . “please don’t take my sunshine away” . . . I would cry almost every time just at the thought of ever losing her. Little did I know. But how blessed we are as mothers of these choice spirits, and how blessed we are to have such a loving Father in Heaven and Savior who have provided a way for us to be together forever! To have the strength to do what you must do every single day, and what it must put your tender heart through, your spirit must be as choice as your sweet son’s! May your family be blessed with peace and comfort and continued strength. You are truly inspiring to others.
Jennifer,
Thank you for your comments, and please accept my deepest sympathies. Although I think about it often, I don’t think I’ll ever be fully prepared for losing my son. I can’t imagine what you have gone through, and I am so glad to share with you.
[...] other medical problems. He’s very susceptible to respiratory infections. I wrote about him in “Living with Dying” for Segullah several months ago. For the past couple of years, he has been relatively healthy – [...]