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*How Do You Talk to An Angel? The Plight of Parents Raising Disabled Child
By Chuks U.C. Ukaoma
"How Do You Talk to An Angel" was a one-hit wonder of the Heights musical group. It could also be a rhetorical question that enlists answers from various schools of thought. This article is not about music and musicians. It is not about heaven and paradise because it has "angel" in the title either. It is about real life events that befall real people here on earth. You may know some of the people very well. They may be your acquaintances, neighbors, co-workers, members of your place of worship; nevertheless, these are people you know. You might even be one of them.
Let me preface this piece by saying since no human is perfect, we all have special needs; we each have our own handicaps or disabilities, so to speak. The degree of specialness may vary.
I previously published this article on Yahoo and other websites.
When faced with one of life's complexities to the point mini juru nwa awo onu (one is rendered speechless), I resort to this statement: "life is something". In December 2010, I accompanied someone sick to a special medical facility here in Austin, Texas. What I witnessed that fateful day rocked my core. There were husbands helping their sick wives, parents attending to their stricken children, some as young as two years old, adult children helping their ailing parents. Then there were people who looked healthy on the outside but are in for the fight of their lives. All the sick people there were fighting cancer.
As I struggled to take in the strange environment while remembering to breathe so I don't pass out from nausea, I asked myself, could it be possible that a few city blocks from this treatment center, there are healthy husbands and wives engaged in all-out divorce battles? Couple these once-madly in love couples be wishing the other death and sickness now? Could a brother be so jealous of his sibling that he wishes him or her harm? Could arguments over irrelevances be robbing some families from treasuring today? Could these feuding folks witness this other hospital scene over here? Do we always acknowledge how precious and precarious life is? Life is truly something! ( Continues below..... )
Photo Above: Chuks U.C. Ukaoma, Article author
Whether you an agnostic, Atheist, Christian, Ethicist, Hindu, Jew, Moslem, Pagan, etc. you sometimes arrive at a point where you question your belief and wonder if the alternative is a better choice. It is at the point you could rhetorically ask, "how to you talk to an angel?", any angel of any faith that will give you answer to the pointed question you ask.
How does someone raise a special need child and remain sane? How? While you ponder that question, let me compound it by asking what type of higher power (Father, God, god, Allah, Buddha, Juju, Idol, Maker, Almighty) allows such hardship to befall mortal beings who have done nothing to be so deserving? Finally, if the parent(s) deserved it for whatever reasons that did not merit forgiveness, then why bestow such heavy crosses on innocent children? As the Supertramp put it, " There are times when all the world's asleep, the questions run too deep for such a simple man". Think about it; don't just brush it aside by saying "it's just part of it, that we've got to fulfill the Book", or the Lord will not allow you to tempted beyond what you can bear. To the naked eyes, some of these loads are pretty Sisyphean and are calling for any angel to come lighten these massively heavy loads
Sadly, some men and women of the cloth have taken advantage of the stricken at their weakest point. A good friend summed it up by saying, it is what is "behind" the place of worship that is more important: the kindness to others, assisting people you don't expect to return the help to you, standing up for people who cannot stand up for themselves, remembering your former teachers, helping people in need both here and overseas, aiding an employed person find work and hope, flashing smiles to brighten sad faces as you pass by, cleaning the windshield of the elderly woman or man next to you at the fuel station. Telling that embarrassed waiter/waitress who just dropped your food on the ground that it is OK and that you're glad he or she did not get hurt. Knowing, if you are in power, that "no condition is permanent". And being kind to people you meet on your way up because you will meet them on your way down where they will remember you by your record.
What makes this article more difficult to write is, I am a mere outsider looking in. I have not lived the life of caring (on a daily basis) for a special need child or parent or wife or sibling. While I am thankful for not being in any of those shoes, I do not feel those who are doing this true labor of love work are less fortunate than the rest of us. In every previous article, I start out stating a problem, discussing that problem, and tabling solutions the reader can use to solve that problem. In this case, I have no solutions. In fact, I am asking the reader how does one go about helping caregivers or parents of special needs children? While the Internet is full of what appears to be excellent information on this subject, only first-hand practical solutions will suffice.
If someone you know goes to a hospital to deliver a baby and comes home with a special needs child, how do you go about supporting that family in deed, not just with words, if you have not been in this situation before?
As often the case, families who have had to carry these extra heavy loads tend to have extraordinary powers and resiliency of coping. They develop Sampson-like strength of dealing with life without asking or wanting anyone to feel sorry for them. They seem to feel it is their cross and they are going to bear it with grace and without leaning on friends and family. And if you are that friend or family of the caregiver or parent, how do you get in a word in edgewise, so to speak....how do you begin to show you care and want to be of help without stepping on the toes of same people you want to aid? How?
Do you offer to help take care of the child while the parents take a break, albeit for a few hours? If the parents allow you to do so, would you know what to do and how to take care of the child? Is helping one day a week or a month good enough? Are you really strong enough for this task, in other words, can you handle it?
If you have not witnessed a snippet of how difficult it is to care for a special need child, next time you are in a public place (park, bus, hospital, etc) keenly observe what it takes to get that 8-year old child with Cerebral Palsy in or out of a vehicle just one time. Then imagine if the parents can't afford a vehicle as the case in many developing countries and here in the United States. To add salt to injury, Nigerian well-to-do parents who happen to have special need children are often accused of using their stricken children for black magic money machine (ogwu ego), due to sheer ignorance. Some Nigerians believe that stuff. Birth defects and cancer afflictions in the middle and upper income families were erroneously attributed to this money machine nonsense. This stereotype makes it possible for society to pile on these innocent people like they were the Witches of Salem instead of affording them the compassion they crave.
Imagine the unfortunate stare and shame of the whole situation day after day.
Think about what that parent of a down syndrome child was goes. Then imagine that scene repeated day and night, seven days a week, fifty-two weeks a year and years on end. Imagine being that parent, my friend!
The essence of the above vicarious exercise is not to create the misery-likes-company feeling of seeing people who are worse off; I totally reject this notion. Rather, the goal is to foster empathy and humility and gratitude and to treasure every moment we have because it could easily be worse. Also, we need to accept the fact we may not have done everything to deserve our good fortunate or the challenges in our personal lives. No, they did not bring these evils on themselves.
The simple act of going to the grocery store or the doctor's office or to the park entails Pentagon-War-Room logistics. The caregiver has to check off things on a long list. Some things will have to be planned way in advance with every t crossed and i dotted. Even normal fun-filled family vacation becomes another Mission Impossible for those who can afford to go on vacation. Then there are parents who have to do these things and still work demanding jobs outside the home. Some work for bosses who either have no clue or don't care about what these caregivers are going through in their home lives.
Then there are cases where the heavy load befalls a happily married couple and after bearing it for some time, one of them gives up and leaves because he or she can't take it anymore. Sometimes both decide their child is better of in a home or institution. Either way the parents live with the heavy hearts of thinking they did not do enough for their special need child. Who are we to judge any parent or situation, especially when we have no idea of how hard a road that is?
Parents of normal kids and special needs children have it tough too. The normal children may feel they receive less attention than their sick sibling. This may create the Prodigal Son-like jealousy. The normal children may also feel burdened by helping take care of their sibling or even the uneasiness or awkwardness some people feel being around people who are different. Parents can be caught in the middle of all these family storms with no escape hatch.
There are lessons we all can draw from this topic: treasure everyday and count your countless blessings. Regardless of how bad you think life is today for you, don't make it worse, because it could be worst.
I don't even know where to begin to write about parents who have had the unthinkable task of burying a child, especially parents in Diaspora whose children passed away. Whether the child was laid to rest here or in motherland, the child is resting in peace. It does not really matter where one is buried as long as the person is rested in peace. Either by choice or by circumstances, many of us (including the big wigs back home) will meet our Maker abroad. The big wigs will likely be on their last medical trip overseas when they kick their bucket. They could help themselves and the masses today by establishing in Nigeria the same first-class medical facilities they seek overseas. But would they?
For some of these parents whose only child or only daughter or only son son passed away, take heart! The parents can legally adopt another child or daughter or son, not to replace the irreplaceable one, but to help fill the void. If you have other children be they all boys or all girls, still count your blessings. Don't be so consumed in mourning the dead that you forget to be appreciative of the living. There are childless parents who want a child...any child in any condition.
Also, there perfectly normal parents with normal children who adopt special needs children, like the Orlando Magic Basketball General Manager Pat Williams. There are parents of dead children who wish their children were alive and severely disabled. There may be parents of critically challenged children who want to end it to save their children from the pains. There are perfectly normal families that have all perished in an accident or crash. This happens all over the world all the time to people who did not do anything to deserve such fate. Life's something.
So to parents and parent-to-be everywhere, be grateful for what you have. If you are blessed with only girls and you long for a boy to carry on your family name, can you (in the wise question of my friend Fidelis Okonkwo, M.D.) please tell me the first name of your great grand father who was a boy? And can you positively identify his grave? If you can't name (or ID the grave of) your all-important great grand father, then relax and be happy! Being male or female does not matter after a while after all.
If you have only boys and wish for a girl to care for you in your old age the way only a daughter can, chill out! Boys can care too. So what your child made A-minus instead of the A-plus you wanted? Big deal your child scored less points in a game than you expected? So your week or day has been too routine and boring for your liking because everyone is healthy and normal in your family? Well, do you know getting into a serious car-wreck or your child getting sick can really excite your life and get you jumping and your days hectic and less boring? Boring can be great!
So when your child comes home from school in one piece, but just hungry, I say, rejoice! When your wife comes home whole, overjoy! When your husband arrives home safely, forget any arguments of the night before and say a little prayer of gratitude. Should you make it a point to hug each member of your family the first time they walk-through the door everyday? Do we really have time to ignore, disrespect, and not smile at people we are supposed to love? Should one divorce the spouse because he or she has a chronic illness; or that one now makes more money than the spouse? Should one parent ever cause their child to disregard the other parent?
In the heat of the moment and the battle, it is easy to sometimes forget how good we have it. For a majority of us, what we term our bad days are better than some people's best days! Let us keep that in mind as we treasure the best times of our lives which is NOW. That might be how we talk to an angel of our faith.
Chuks U.C. Ukaoma and his family reside in Austin, Texas, U.S.A. He's from Abia State, Nigeria. Email:firstname.lastname@example.org.
Photo Above: Chuks U.C. Ukaoma, Article author (Photo 2)
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