My daughter was born quadriplegic, legally blind, and unable to eat or drink so she is dependent on a feeding tube. She is unable to even hold a toy in her hand. She is unable to speak but that doesn't mean she can't communicate. On the contrary, she has taught me more in the last 6 years than all my almost 60 previous years combined.
- A severely disabled child can be a tremendous blessing. After the initial tears and anger subsided my disabled daughter quickly became the greatest blessing of my life. She has brought me tremendous joy and fulfillment and has taught me what is truly important in life. It is through a child who is incapable of returning my affections that I have learned the true meaning of love. Although it's a difficult job I wouldn't trade it for anything.
- Having a severely disabled child is like having a magnifying glass to expose your true character. Whether they be virtues or flaws, your character strengths and weaknesses will be exposed due to the additional stress imposed on the parents. For those of us who rise to the challenge there is little reward but, for those who don't, there is a long line of people waiting to criticize us and tell us how to do our job.
- There is no such thing as reciprocity. I once dedicated an entire year of my life to helping a family care for a quadriplegic member but, now that the shoe is on the other foot, in the six years since my quadriplegic daughter was born, the number of people who have volunteered to come into my home to help with her care is zero.
- Your child's chances of being abused are enormous. There are predators who target vulnerable people for rape, theft, and horrific crimes but it goes far beyond that. Disabled children are bullied mercilessly by other children. The very people who are supposed to be protecting your child often lash out, not out of maliciousness but out of frustration. Teachers discipline disabled students more often than non-disabled students. Bus drivers may be intolerant of disabled people because they require extra attention and cause them to be off schedule. Caregivers find it easier to watch TV than to change a diaper. It goes on and on. I feel the frustration too so and, although I don't take out my frustrations on my child, I do understand how easy it is for this to happen. It grieves me that those among us who are so vulnerable are the ones so frequently abused. (see Nancy Grace on YouTube)
- Chances are your marriage won't survive. I keep in contact online with many other families with similar children and I've lost count of the number of times one of the parents, usually the father, bails and leaves the other parent to care for the disabled child. It's a combination of stress on the relationship and one or both parents resenting the fact that they no longer have a life of their own because their life is totally occupied caring for the disabled child. As I write this I am keenly aware that I may soon lose my partner, not out of abandonment but because the same birth traumas that almost killed my daughters will likely kill their mother.
- There's a good chance your child will die before reaching adulthood. As I keep in touch with hundreds of families with children like my daughter, there's a never ending stream of reports that one of these precious children has died. I feel like the survivors of the USS Indianapolis must have felt. For those who don't know the story, the USS Indianapolis was sunk in World War II in warm waters infested by sharks. About 900 men survived the initial sinking but the navy never reported the ship missing so they floated in the water for days watching their shipmates being picked off, one by one, by the sharks. By the time they were spotted by accident and rescued, only 316 men were still alive.
- The burden of caring for a severely disabled child is so great many parents actually resort to killing their child. I was stunned how often this happens. Like many parents with a disabled child, I research my child's condition online and, about once a month, I run across a news article about a severely disabled child being killed by their parent. Usually the child is starved to death over a long period of time, the cruelest death imaginable, but cases of death by abuse or mercy killings are not that uncommon either. The numerous starvation cases are an indictment of how our society looks out for its most vulnerable members. For this to happen, friends, family, and all the various social agencies involved with the child have to be looking the other way over an extended period of time and yet it does happen and it happens regularly. How can this happen in a so-called civilized society?
- Having a terrible tragedy in your life is no guarantee against future tragedies. As if having as severely disabled child isn't bad enough, I have 3 special needs children, all diagnosed within 14 months of having life-threatening medical conditions. As bad as that sounds, both of us parents are disabled too. Unfortunately, it's not unusual for a family to have multiple special needs children or a parent of a disabled child to also have significant medical conditions or disabilities. Then, of course, there's the almost universal tragedy of financial hardship for families with severely disabled children.
- Well meaning people say and do hurtful things. It's not so much intentional as it is insensitive but it happens all the time, everything from people making "retard" jokes in the presence of my daughter to cliches of which they have no clue how much they hurt. When my daughter was born with severe cerebral palsy and doctors told us she would be quadriplegic and blind, a well meaning friend came to the hospital and said, "At least she's healthy. That's the important thing." Even though my daughter cannot pass her disability to someone else, it's not unusual for the parent of another child to make a subtle or not-so-subtle attempt to prevent their child from playing with my child.
- God may exist but don't count on his people to lend a helping hand.
- In the 6 years since my daughter was born I've heard countless Christians tell me they'll pray for her but it never occurs to them that they may be the answer to their own prayer.
- I've heard countless Christians tell me God can heal her, as if I didn't already know that. Although they mean no harm, it comes across as ignorance about the value of special needs children and the purpose God has for them.
- I've heard countless Christians tell me God never gives us more than we can bear but that just comes across as an excuse for not getting involved.
- I've heard countless Christians tell me they're so glad God chose me to be my daughter's parent but that comes across as, "Better thee than me." It offends me because, if God chose me, then he also chose the parents who chose to kill their disabled children. It also offends me because it makes me out to be a saint when I'm not. I didn't choose this role. It's just the hand life dealt me and I'm only trying to play it out the best I can.
- In spite of the countless numbers who have offered their sympathies, the extent of those people actually doing something, however, is 2 people who volunteered to drive our van to take us somewhere because I am no longer able to drive due to my own disabilities.
- If I sound bitter, I'm not. People don't behave this way out of malicious intent. They just don't know what to do or how to respond to a severely disabled child and I, like most parents in this situation, am just too exhausted to take the time to educate them.
Something to Consider
There's a well known story in the Bible. A man was born blind and some people asked if it was because of his sin or his parents' sin. Jesus response was, "Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him."
Are you like most and assume Jesus was talking about healing the guy? We live in a time when medical miracles are common. Most wouldn't even think twice about this. Even 2000 years ago when this was written the man's story was rejected.
Perhaps what Jesus was talking about is the "works of God" in our special angels isn't healing them but what we can learn from them.
Most of us love our children but what if your child required your love/attention 24/7, 365 days a year but was incapable of returning that love? Is your love really unconditional?
Happiness and Contentment:
What if you lost everything; your sight, your ability to communicate, your ability to move, your ability to even eat and drink? How happy would you be then? In spite of all that my disabled daughter is the happiest person I've ever known.
The 7 Deadly Sins: Pride, Envy, Gluttony, Lust, Anger, Greed and Sloth
Ever wonder what life would be like without these? You have to look no farther than a severely disabled child to find out.
The Appropriate Response:
When their paths cross with a child like this most people offer to pray for the child and walk away. The outcome? The child is not healed, the person's faith is not strengthened, and nobody receives benefit from the encounter. How much better to say, "God, what is it you wish to teach me today through this child," and become a friend to the child and the child's family. Jesus said it is much better to give than to receive. Give the gift of time to a disabled child and you'll find out what it is to receive.