By The Wiz
Guest Post by Anonymous
I am the mother of a disabled child. In the LDS church, through revelation, we have received information about what happened in the pre-existence, what goes on after this life and have the blessings of the sealing power of families. These are real and wonderful things. However, these revelations allow some of us to speculate on things that may have happened in the pre-existence and what may happen after this life.
Let me illustrate: Invariably, when we take our severely disabled 5 year old son to church or to any church activity, some well-meaning soul comes up to us and says one of the following things to me or my husband:
“You are so blessed to have such a precious spirit in your home!”
“You must be very special to have been called in the pre-existence to take care of this special spirit!”
“He must have been very special in the pre-existence to have been given this mission in life!”
“He is a celestial being – what a marvelous spirit must exist in your home!”
Or something else along those lines. The fact is, none of us knows what went on in the pre-existence, and if I had known then what I know now, I definitely would not have chosen this.
Having heard these things over and over in church and from church members, I feel that I must say something. First of all, having a disabled child is not a blessing. Let me tell you about my son.
My first son suffered a brain injury at birth, and at 5 years old is the developmental equivalent of a 2 month old. He is on 4 different medications and a special diet to control the hundreds of seizures he was having every day. He is on two anti-spastic medications and gets Botox therapy because his muscles, due to lack of use, are slowly curling him into a ball. He is on one medication and two breathing treatments to keep his lungs clear. (That’s a total of 9 different medications given 3 – 4 times every day). He has a feeding tube inserted into his stomach because he can’t swallow. He requires physical, occupational, speech, and respiratory therapy every day. At least once a year he is hospitalized for pneumonia. He has no control over his bodily functions, so at 5 years old he is still in diapers. We have battled bed sores, surgeries, and a bout of vomiting blood, and countless days in the hospital in his short life. His care is nearly overwhelming, and his medical expenses have nearly bankrupted us.
For years my husband and I hated everyone who had normal children. The experience tried our testimonies to the very limit, and we teetered on the edge of inactivity for a number of years. None of this is a blessing. Every day of my son’s life is hard – he wakes up at 6:00 a.m. needing to have his secretions cleared out of his lungs, he must have every need taken care of, and I can count on one hand the number of times he has actually responded to me. This is not a blessing. I love my son, but my husband and I both know that he will not live to grow up. In fact, we are surprised that he has lived this long. We quietly hope every morning that he will have passed away in the night so that his struggle in this life will be over. This is not a blessing.
I think people in the church make these comments partially because disabled people make them uncomfortable and they just don’t know what to say. I can’t fault them for that, but hearing how blessed I am over and over makes me want to take these people aside and smack them. I want them to come into my less-than-celestial home, and see all the mucus, pee, poop, vomit, and blood stains on my carpet from my son’s various problems. I want to make them pace the hospital floors with me, and feel the anguish of asking the Lord to take him, but at the same time not wanting to let him go. I want them to accompany me on all of his many doctor’s visits and to see how hard it is to juggle him and all of his medical needs with the needs of my other two children. I want them to feel what it is like to rarely be able to go out with my husband alone, and to NEVER be able to travel outside our city without putting him in a home. This is not celestial. This is not a blessing.
I do have to say that I have been blessed as a result of this experience. I have come to a deeper understanding of my Heavenly Father, not as an angry, vengeful God, but as a loving Father who weeps with me as I struggle. I have been blessed with a deeper understanding of the Gospel and the Plan of Salvation and a stronger testimony due to many tests of it. We have been blessed to have people come into our lives who have been able to help our son in so many ways – doctors, teachers, therapists, and nurses who have blessed, cared for, and guided him and us. We live in a wonderfully supportive ward, where many loving friends have offered to learn how to take care of our son so that we could have some respite. We have since had two other sons who have filled our lives to the brim with happiness, despite the fact that we now have THREE in diapers. Literally, the windows of heaven have poured out upon us. But greatest of all, I have also been blessed with patience and tolerance so that when someone tells me how blessed I am to have a disabled son, I just smile and nod my head.