REALITY HIT SO EARLY

Indeed, there was never a day I remember talking to someone imaginery as I see my girl do. Therefore it is needless to say, I have no imaginert friend.

Life seemed so real before I had worries of my own. All I remember dealing with was what was in my real world.

I pray that every parent shall learn to let their children dream. Allow them to create those friends. You can ask them once in a while to let you in their world just so you share with him or her what has been created.

Just make sure that there are no monsters and creepy creatures in their world. We need it all innocent and clean. You know what I mean; you do not want screams in the night that their world has turned agianst them.

Happy parenting my dears

In response to The Daily Post’s writing prompt: “Imaginary Friend.”

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I KICKED IT STRAIGHT IN THE FACE

 The thought of publishing a book toyed on my mind for days on. It seemed enormous even when I had written eBooks on several eAssignments.

I wondered what it would take to get the right idea, how long I would take to get it written, how I would market it, and the like.

However, looking at my current standard of living, I vowed that I would take one step at a time. Now, I am almost there.

All it took was reviewing my life and asking myself if I would do something to better it. That was an awesome wake up call.

You shall see it when it is finally in the stores. I am glad that God gave me the strength and will to step out of the known to the unknown.

I am a work in pregress, hurray.

In response to The Daily Post’s writing prompt: “Fright Night.”

JUST A LITTLE MORE IS ALL I NEED

9“Life had never been easy for Roland. His childhood began with rejection from the very person who should have protected him from the angry elements of life. He was tossed from one well-wisher to the next because he was not the ‘ideal’ child.

You see, on his first day, the doctors had told his mother that he needed a lot of help if he was to make it in life. That was because he had a weak heart, and his brain and legs were not fully developed. That sent off the sirens in her head. She chose to toss him out of her life because was not ready for the challenges that lay ahead. Besides that, she could not show off an imperfect baby.”

That is the story of many children who are born with deformities. Those that are lucky to be born to parents that choose to love them instead of tossing them out as burdens, they live to see tomorrow. However, those whose parents want nothing to do with them find themselves in dumpsters, toilets or on the road side left for dead or anyone who cares to take them on.

Permit me to tell you that it is not the laws in your country that set the pace but the parents to these children. In as much as some countries’ laws make provisions for such children, if the parents are not willing to go the extra mile for them, the rules are useless.

So at the end of the day, it takes the parents’ effort to see them thrive. All they need is your love, will you choose to give it to them or let them die? All they are asking from you is a little of you so they can live.

I am glad I left

It seemed unfathomable but the urge was too strong to resist. It was my old job. I did not feel appropriately rewarded by it despite my diligent hours of work. So I decided to let go. Although I have not had the guts to tell my eBoss that I shall not work anymore because of their threatening langauge of lack of commitment, I quit. I am glad that I left despite knowing that I would not get those dollars anymore. I am happier, more in tune with my interests and a better mum. Hurray

In response to The Daily Post’s writing prompt: “If You Leave.”

WALKING IN THE FOOTSTEPS OF A MOTHER OF A SPECIAL NEEDS CHILD PART 1

4Many of us have not taken the time to understand them. We have not listened to their stories nor do we share in their pains. Yet we are quick to point fingers. We are quick to pass judgement. That is why I saw it fit, to share this mother’s thoughts. She only wishes that you wore her shoes for a day. Here is her story:

Isaiah is a three-year-old boy, and he has a disorder called 18th chromosome or 18q-. It is a very complicated disease and just one child in every 40,000 has got 18q-. That brings the statistics to 7800 Americans suffering from this rare disease.

Following his disorder, Isaiah suffers from a series of complicated developmental and medical issues. For example, he has had to go through a kidney tract surgery, endoscopies, heart surgery, and bronchoscopies. Besides that, there was a time in his life where sleeping with an oxygen tube was a necessity. He has also undergone innumerable medical tests and continues to see several specialists. Since he was three months, we have been in out of hospitals, doctors’ offices to see what could be done to make his life better. Isaiah also battles with acute development delay meaning that things such as speech therapy, behavioral therapy, even occupational therapy are of necessity.

Anyone with a special needs child will agree with me that in as much as it is challenging to raise a child with a disorder, it is also a blessing. It is a challenge because of very obvious reasons and a blessing because every challenge overcome brings on immense victory and joy. Sometimes you will be caught smiling like a lunatic but it is until one is where I am that they understand what I mean.

You could be a parent of a special needs child or probably know a parent that has such a child. Then you might relate when I say that sharing my feelings regarding this bit of my life is not something I often do, not even with close friends. That is why I decided to compile a list for the purpose of building our understanding; however, I do not speak for every parent with a special needs child. But from the few I know, and from me, this is what I have seen as pretty universal.

I feel lonely: It is a rather solitary experience parenting a child with special needs. I feel that I do not belong when with mothers of typical children. I want to be happy for them, celebrate with them. However, I feel so sad when I hear one praise their 2-year-old for what they have or have accomplished. For example, having lots of words in their mouth, or for being able to chant ABC’s effortlessly or because he can use his potty without messing the place up. Good for them I say, it is not the same in my world. It is sanity saving when I connect with mothers that have special needs children. That is because we can share the medication stories, therapies and the like that only happen in our world and it is not abnormal for my son not to be able to use a potty at his age. However, even in this somewhat safe community, there are variations in how each child is affected. With my Isaiah having a rare 18q- disorder, only I understand his unique makeup and trials. With the honor that comes with taking care of him also comes the solitude of the role. Many times I feel all alone in raising him.

I feel jealous: It may be difficult for me to come plainly and say it, but it is the truth. When I look at my neighbor’s one-year-old doing the stuff that my five-year-old can not do, say, stand without struggling, a pang of jealousy crosses my heart. It hurts me that Isaiah is struggling to learn what should have otherwise come to him naturally such as laughing, chewing. It is also hard for me to listen to my friends talk about the accomplishments that their little ones have made in so short a time yet my Isaiah is taking ages to learn just one thing. It makes me mourn for him. As absurd as it may sound, it is the truth that I sometimes feel jealous of other special needs children. That is because some seem to grasp faster or have disorders like Downs Syndrome, Autism that are easier for the public to understand, cope with, offer assistance and resources compared to that of Isaiah. It may sound petty and just, so you know, it does not belittle my son’s accomplishments over the years or my joy and pride, but it is the truth.

I am always worn out: Parenting on a whole is a daunting task. However, parenting a child that has one disorder or the other takes daunting to an entirely new level. Fatigue seems to be a constant companion. In as much as I may have had a good night’s sleep or taken some time off, there is an ever-present emotional and physical tiredness accruing from the weight to taking care of his needs regularly. The visits to physicians, and therapists are numerous seeing that things such as therapy may be a daily regimen. The only spare time I may have will not be mine because I will use it to look through the piled-up bills and paperwork or something for Isaiah. For example, researching for whatever new form of treatment may be there, how I can make his life easier, and joining other special needs parents to advocate for our children in the education and medical system. That is all in addition to the emotional strain that comes with raising a special needs child. That is because most of the time you never know what to expect and may be dealing with peaks and valleys of his life always. It is not to say that I am not thankful for the grace to keep moving or the help given by friends in any way to  make life a little easier for me.5

Despite all the above, they are thankful to have their children and take care of them. That is not to say that there are none that wish them dead or that they were never born.

Look out for part 2

WALKING IN THE FOOTSTEPS OF A MOTHER OF A SPECIAL NEEDS CHILD PART 2

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Many of us do not understand what it takes to raise a child with special needs. However, I want to bring to you what one of these parents feels. All she wants is that you take up her shoes for a day if not a second and understand her journey that she has chosen to walk with joy despite its hiccups.   It is a continuation of what we saw earlier.

I am scared: There are some times when I worry that I may not be doing enough for Isaiah. I worry about the future ahead of him, will he be able to drive himself around, will he ever become independent, will he ever find a spouse, and so much more. I get scared when my mind conjures up all the hurts he may go through seeing that he is different in this very harsh world. Besides that, I fear for the person who may try to inflict any pain on my son. I am also scared about finances seeing that none of his needs are cheap. I also fear what will become of my Isaiah if something were to happen to me. However, my fears have over the years been superseded by my faith plus the exposure to other children, teenagers and adults who have the same disorder as Isaiah. On meeting these wonderful people at a conference I was chanced to attend, all these unknown fears, and the sadness melted away giving way to hope because I saw love thrive in their lives. Then I knew that the fears I had projected onto his life were my imaginations and not reality. The only fear that now remains is the fear of emotional pain for both of us.

I am only human: There are many times when I have been pushed and challenged to go beyond what seems humanly acceptable while raising Isaiah. It is these times and situations that have helped me grow tremendously in my personality, develop empathy and a soft heart for others in ways I do not think I would have had it not been for him. However, I am like the mother next door sometimes because I get irritated by Isaiah, I get cranky and also disappear to the shopping mall or spa for a little air. In as much as he seems to be my full-time indulgence, I still have aspirations and dreams of my own. I still dance, travel, I am working on a book right now, love a great meal and still do talk about dating. I have not lost myself, and if all I talk about seems just to be my life, then you need to know that it is not easy laying the details of my son there in the open.

Please stop using words such as retard, as long as it’s healthy: I know that it is not always their intention to be rude. I am also sure that before Isaiah came along I might have made those comments and used those terms. However, the tide is different now in that when I hear them, I feel hurt well up in me. Please stop using those words, it is hurtful and disrespectful to those who have given all they are to raise the children you are mocking. Then for the pregnant women that always use the comment, as long as it is healthy, it is starting to sound like a thoughtless mantra. I do share and understand your wishes for a healthy baby, but if you do not get one but rather one like Isaiah, then what? All I want to tell any pregnant woman I hear say that is that you will be okay, you and your baby will be well, and life will be amazing no matter what.

I would love to talk about Isaiah, but it is difficult: Isaiah is the best thing that ever happened in my life. Sometimes I want to shout it from the mountaintop that he is the funniest, cutest boy ever, how much he has accomplished, like becoming a class president.  Then there are times when the day has been so rough, or the doctor tells me about another health or development issue. Then I may not say much. I do not often let on to friends or family how much I go through regarding Isaiah. However, I still want to learn how to share my life with people. One thing that I always love is when someone asks a rather specific question like, “How is Isaiah’s speech therapy class?” It is better than a general question like “How is Isaiah?” as it makes me feel overwhelmed with emotion hence giving a dull response, ‘Good.’ Starting from somewhere is what gives me a chance to share, however if I am not sharing, it does not mean that I do not want to, or there is nothing going on.

Parenting a child with special needs has changed my life entirely. Coming from a home where perfection and performance are more important than anything else, it got me to judge myself and others unconsciously through that lens. Nothing shatters such lenses more than having a harmless, adorable and sweet child born to you with impairments for he or she makes everyday living and ordinary ‘performances’ close to non-existent.

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I have now got to learn that true love is meeting someone; whoever they are with whatever they have or do not have, exactly where they are. Raising a child with special needs shatters all the perfections we carry in life, putting love and understanding in its place. So, in case you have been wondering, it might be tough but in many ways I know and believe that I am blessed.

WHAT YOU OUGHT TO KNOW ABOUT SPECIAL NEEDS CHILDREN

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They have a lot of attention in what we call the developed world. One could think that they take up 1/4 of their population. However, that is not the case. These people have chosen to get out of the closet and stand up for their children, sisters, brothers, nieces, nephews, you name it. They may not be many, but they matter.

However, in my African setting, some of us have look at them as disgraces to society, a product of witchcraft or adultery. I do not know how true these beliefs are but I beg to differ.

They are many reasons why these defects happen and we ought to embrace them for they have the same blood flowing in their bodies like we do. All they need our love, time, affection and other resources to thrive. All I am asking is that we give them a chance to live. 

Next week is my special children’s week. I shall post several articles in their regard, as time allows. Feel free to like, follow and comment.

God bless.