The Name

…how hard you try and be the perfect partner, you cannot fake an emotion you have not really experienced…

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July 2016 ~ I received a name… just a name. Shaun. Do I know any Shauns? No. Not in the present, not in the past. But in the future? Oh yes I will. I truly and wholeheartedly believe I will.

One of the biggest challenges a writer faces, is trying to guess whom your ultimate audience will be. How truthful you can be… how revealing. Who will read your thoughts, whom might be offended by it, even worse, whom might be hurt? I guess one could obscure truth with fiction, but in the end your life becomes your frame of reference. Whether you are an expert or a beginner writer.

So while I mull that over… trying to determine how honest this blog can be… let me stick to a safer, and more exciting subject, my promise from God.

Obviously I’m Christian. That’s another post on its own… the path I walked in this journey of faith. But let me sum it up really really short, I didn’t believe in love. I’ve always seen myself as a realist with no illusions about how a relationship in general runs it course. In an attempt to conform to society’s idea what a “fulfilled successful life” would be, I’ve made a few attempts to embrace the idea of sharing my life with another, which failed dismally. But at least I was blessed with two beautiful boys. Unfortunately they too had a price to pay for my mistakes.

In 2015 I ended my marriage. It took the entire year thereafter to finally face my reality… I have no idea what love is. I only truly comprehended God’s fatherly love for me after the birth of my boys, after I finally understood what it felt like to love a child so deeply, so unconditionally.

But when it comes to romantic love, I had to admit that I have little belief in the fairy tale stories about being in love and all that it entails. It hit me like a fist to the stomach, the reason my relationships fail is very simply this: No matter how hard you try and be the perfect partner, you cannot fake an emotion you have not really experienced.

It’s not an easy truth to face about yourself. Makes me feel like a cold hearted human being. But I know nothing could be further from the truth. Hurt? Yes. In hiding? Yes. Cold hearted? No.  My prayer became simple… “Father, will I ever know what it is like to trust another human being with my whole heart mind and soul? Will I ever meet someone that will make me believe in tummy butterflies?” The answer was so soft, I almost missed it

“Shaun”

Liebster Award

Liebster award

One of the most encouraging bloggers I’ve had the pleasure of following the last couple of weeks nominated me for the Liebster award, thank you to Time on a Mission for remembering me when you considered your nominees, I’m absolutely delighted :). I’ve read through the rules of this award and I’m supposed to write a few words about my chosen favorite blog which just happens to the same blogger that nominated me, Kevin in the cosy Time on a Mission corner. Unfortunately I don’t always have the time to read through a lot of blogs, but I never miss one of Kevin’s blogs. He always seem to be challenging his readers to reflect on their own motives and goals. Whenever I read his entries I always feel like there is so much more beauty in the world and it’s simply wrong to get stuck in your own little comfort zone. I truly enjoy the way he describes his life, he does it so vividly, that I decided I really must put a New York lazy stroll on my bucket list. If he wasn’t already nominated, he would have been 1st on my list.

10 random facts about myself:

1. I can only drink black non sugared coffee
2. My workday begins at 4am in the morning something I often feel guilty about when it comes to my boys.
3. I’m dreading Christmas
4. I took guitar lessons when I was 24, learned just enough to play to myself and the boys… who thankfully are still too young to realize what an amateur I am *phew*
5. I believe in facing your fears
6. I have an accounting firm
7. I love South Africa
8. God didn’t let me go, even when I really wanted Him too
9. Even though I’m excelling in point 6, I failed my Std 10 final math paper, the only paper I ever failed haha (had to make that up in university)
10. I traveled to Uganda in 2015 and spend some time with the Silver-back Gorilla’s in their natural habitat… it was one of the most memorable things I’ve ever done

And now to answer the questions I was asked:

  1. Why do you blog?
    Can I say because it’s easier than confiding in a therapist 🙂 I’ve always loved words. I read my first novel at the age of 6 years. Many times reading and writing provided a means of escape to a reality that wasn’t always easy.. to put it mildly. Once I’ve penned down my thoughts, I feel more relaxed. Plus I love the fact that here I can just be me, I don’t have to seem strong all the time and thus can’t disappoint those that depend on me
  2. If you could have coffee with one person… who would it be, and why?
    This one is easier 🙂 Definitely without a doubt I would like to have that one dream coffee with Jesus. I imagine He has to softest warmest eyes. I would really love to ask Him to show me the world and people around us through His eyes.
  3. What is your favorite comfort food?
    I can honestly say that I don’t revert to comfort food. I’ve always been more inclined to have a curry as my meal of choice, simply because I love hot foods, like curries and jalapeno etc. But I don’t find my comfort in food anymore (more to be revealed in one of the next questions)
  4. What motivates you to get of bed every morning?
    I have a lot of people that depend on me. My boys, my clients, my colleagues. I just cant phantom letting them down. It’s not always easy as I often find there is just not enough hours in the day, and that gets me out of bed real fast in the mornings
  5. What is your favorite holiday and why?
    The easter holiday always reminds me how much undeserving grace we have received. The cost of that grace. It’s not as much about the enjoyment of the holiday but the hope and gratitude we have or should have
  6. What is love?
    I see love in different kinds of categories. I only understood true parental love when I was blessed with my kids. Gods love for us is something that I truly wont ever comprehend, but something I also discovered anew through my own love for my kids. Defining love? My humble opinion? it must have a lot to do with selflessness, with honesty and trust.. respect and companionship
  7. What calms you down when you are stressed?
    Faith. No matter what happens I always know He is in control. Sometimes I have to say it over and over again to myself but it always works. And music, the right kind of music, goes a long way.
  8. Which do you love more, snow or sand and why?
    I love this question! I have no choice but to say snow! I live in a sunny South Africa and snow is very rare here. I think it only snowed twice here in my life span and I always imagine it must be fairy tale beautiful to experience a white Christmas.
  9. What is your greatest accomplishment in your life so far?
    In 2007 after my eldest was born I decided to turn my life around. I lost 40kg excess weight in 9 months and in the past 10 years I’ve managed to maintain my weight with some deviations here and there. I always feared that I would put the weight back on, but it truly was a lifestyle change, hence my response in question 3. Im happy to confidently say that even though I also sometimes crave a certain taste I see food in a whole different light and I no longer worry as much about weight gain as I used to.
  10. What do you believe is the purpose of your life?
    How I have battled with this in my life. I wont say that I know without a doubt, but I really seem to be good at helping people. Im not sure if that says something about me, I don’t really classify myself as a people-pleaser, but it’s true that I avoid confrontation at all costs and I feel my day is not wasted if I managed to help someone.

 

Ok so now for my nominees:

  1. Surviving Childhood Trauma
  2. Godly chic diaries
  3. My crazy life
  4. Livetravelfood

to find the rules for this challenge click here

And finally my questions to my nominees:

  1. If you can recall, describe the moment when you first felt like a grown up?
  2. What was your most memorable moment in 2017?
  3. The best movie you have ever seen?
  4. Share your first memory every (and age if you can recall)?
  5. Share one 2018 new years resolution?
  6. Who is/was the one person that inspire/d you the most?
  7. Describe your “most beautiful place on earth” ?
  8. If you could do any other job than your current, which one would it be?
  9. Name your favorite song
  10. What do you enjoy most about blogging?

HME

“…say I was furious with him when my son was diagnosed would be putting it mildly. However, I knew that God knew better… “

HME… short for Hereditary Multiple Exostoses. A disease that was completely unknown to me even as short as 3 years ago. But once a rare disease threatens your child you very quickly become intimately familiar with it. It’s so rare that I can’t just abbreviate it to nursing personnel when my son is admitted to hospital.

My son was born with a small bump on his right middle finger. Noticeably crooked. When I questioned the pediatrician about it he made an “educated” guess that my son hurt the finger inside my womb and that the bone just grew crooked like that. Yet it bugged me. Maybe it was motherly instinct?  Due to this inexplicable uneasiness I often found myself running my hands over his bone structure… his spine, his ribs, legs, arms etc. He was about a year old when I felt another bump on his left rib, distinctively smaller than the one on his finger, but still. My ex husband thought I was paranoid and said he didn’t feel anything weird. He made my question my discovery… But where I was uneasy before, fear had now crept into my heart. However,I went into denial, I realize that now. I just didn’t want to believe anything could be wrong with my beautiful boy. I already lost my daughter. I also wouldn’t have any further children, I just couldn’t phantom anything threatening my baby. I continued with my constant exploration of his bones, hoping for the best, fearing the worst, but never willing to speak my fears out loud. I didn’t want to call things into his life and I certainly didn’t want to face my husband’s anger over my “paranoia”

He was 2.5 years old in October 15 when his aunt was diagnosed with stage 4 cancer. She was still so young and not one of us really understood the severity of her cancer, 3 horrifying months later, in January 16, she passed away.  That same month I felt a huge lump in my sons shoulder blade. I will never be able to explain the fear that rushed over me. At that point in time, it was a year since I ended things with my ex husband. I didn’t even tell him about the new lump, or the doctors appointment,  I just couldn’t deal with his ignorance.

At the pediatrician, he compared his notes and told me that my son has lost over 50% of the range he had in that finger at birth… that the growth on his finger was still growing. He was concerned, and although he didn’t speak it and told me not to worry, I guessed what he suspected when he said he wanted to refer us to a specialist who would probably biopsy one of the growths. Gosh, I was still raw with loosing his aunt, my daughter… I really don’t know how I got through that time.

I’ll just skip the weeks of waiting and get to the oncologists’ finding, he had multiple growths on his body (TWENTY EIGHT), but it wasn’t cancerous. I was so incredibly relieved, I couldn’t even digest anything she said after that. I was in a stupor of relief. But it was to be short lived. A couple days later she phoned me to say that she could see that I wasn’t in the right frame of mind to finish the conversation. Even though it’s not life threatening, he had a severe form of a disease called HME that would influence his quality of life, it was incurable, very painful… rare… She also saw that the shape of his heart was slightly too large and that he had a murmur in his heart. Now a murmur in young children isn’t uncommon, however combined with the size issue, it would be best to visit a cardiologist. She also referred me to the only specialist in SA that she knew off that studied in the HME field.

The visit to the cardiologist was a waste of time. By that time my child just couldn’t cope with all the tests, probing and such anymore. He screamed blue murder since we stepped foot into the hospital until we eventually left, making it impossible to check anything with his heart. They asked me to come back a year later. I haven’t yet. Some might judge and think I’m a bad mother, but my child had to go to the hospital so many times after that, and every time he left absolutely traumatized, I pray by next year he will be old enough to understand that they are trying to help him and not hurt him, so that we may successfully eliminate any possible heart issues. I do however watch him closely for any of the signs I continuously research online.

More about the disease… I’ll just quote if I may…

“Hereditary multiple osteochondromas is a rare disorder that affects bone growth. Bony tumors (exostoses or osteochondromas), covered with cartilage, typically appear in the growth zones (metaphyses) of the long bones adjacent to the areas where tendon and muscles attach to the bone. These growths vary in size and number among affected individuals, even within the same family. Some individuals will present with a few large “lumps” while others will show several small growths. The median age of diagnosis is three years and almost all affected individuals are diagnosed by 12 years of age.

In many cases, no treatment is required. If the exostoses are small, they may have little or no effect on the patient. However, in more severe cases, the growths may cause deformities of the forearm, knees, ankles, spine and/or pelvis. They may impose upon nerves, tendons and/or blood vessels, and interfere with movement or circulation, causing substantial pain as a result of pinched nerves or compressed tendons.

Bones that develop exostoses most often are the upper arm (humerus), forearm, knee and shoulder blades (scapulae). Bowing of the forearm and ankle are the problems that most often require surgical correction.

Approximately 40 percent of affected individuals have mild short stature as a result of shortened and/or bowed legs. If the vertebrae are affected, spinal cord compression may result, causing numbness and/ or paralysis. Urinary obstruction has been observed due to exostoses of the pelvic area.

The bony growths that characterize this disorder continue to grow until shortly after puberty at which time normally new growth no longer develops. The risk for development of malignant (cancerous) tumors, mostly chondrosarcomas, is approximately 1 to 5%.”

That’s that in a nutshell. So yes… hereditary. How my mind spun when I heard this. I did see my ex husband had deformities on his hips, knees and ankles. However in his youth he was such a street fighter and to this day he would rather die than go to a doctor when he is sick or fractures something… What is up with that in any case!

Anyway I just assumed his deformities were due to fractures he didn’t take care of properly.  He didn’t want to discuss it and I assumed it was yet another forbidden topic. To say I was furious with him when my son was diagnosed would be putting it mildly. However, I knew that God knew better… naturally… and I do realize had I known there was a 50% chance our children would suffer such a painful disease I would never have fallen pregnant with him.

I’m not saying I don’t want my son… I love him and his brother with all my heart and I wouldn’t give them up for ANYTHING in this world, but to see him suffer with the pain, the deformities that are becoming more and more visible… it breaks my heart. I would gladly exchange with him and carry his disease just to see him happy and healthy! I fight the fear but when I’m helplessly watching him limp… or hear him cry out in pain… I feel so terribly overwhelmed and scared… and alone. I know that the quality of life I try and secure for him will ultimately influence his decision to one day having kids of his own. It’s a responsibility that really weighs me down.

Besides being mom and dad of a child with special needs, I have to try and maintain a sense of a “normal” household, hiding his disease from his elder brother, who emotionally suffered enough in his own short life… This proves be a tall order, which by the grace of God, I’m managing by taking it one day at a time. I just don’t dare ponder on the future, or look too intently at my son’s drooping shoulder line, the grotesque knees… God please you need to carry me through this journey!

The wait

“…bombards into my life, I will need to master coping with my moments…”

Back to the present… It’s been a year and a couple of months since I became certain that a very special person were to cross my path. Most of the time I’m doubting my capabilities of discerning between a God-promised-miracle and my own wishful thinking. Admittedly the wishful thinking possibility feels insulting, especially as I’ve always dismissed the whole fairy tale idea of romance *Groan* Whatever happened to my logical realistic self?

If I think how incredibly special my future partner would need to be, how much he would need to deal with… it won’t be anything but a miracle. Even if I take away all the past trauma’s and it’s ensuing effects on our lives, just the ever constant threat of the disease plaguing my youngest is enough to send the strongest man I know running. I’ve had suitors since my divorce was finalized. I chose to reveal his difficulties to them very early on. It wouldn’t be fair to let something deeper develop and then spring it on them, now would it? They were very adamant that it didn’t scare them, but sure enough, after a short while they too understood that one does not simply CHOOSE the sacrifices such a relationship would entail. And that’s just the HME, imagine if I had to tell them about my daughter, the abuse (read MY TRUST ISSUES), having to run for our lives from my x with my eldest (read my SON’s trust issues), the hours my business demands from me… *sigh* yes I am realistic enough to realize that unless a kryptoniteless man of steel bombards into my life, I will need to master coping with my moments of loneliness, the moments when the fear of what will happen to my youngest chokes me, and just the day to day worry about the success of my business… If I don’t provide for my boys who will?

Which simply brings me back to my point, it can only be a miracle 🙂 However, I’ve made a promise to myself, I will never ever settle again, I will rather be alone and face whatever lies ahead… On. My. Own… than be with the wrong person again. So far I’ve stayed true to that promise… 2 years 11 months and counting. It wasn’t easy and I wont lie, it has been tempting to give it a go with someone just for the sake of not facing everything so alone, especially the time I was so overwhelmed with my son’s cancer scare and subsequent diagnoses, but proudly, I’ve stayed strong.

I intend to keep that promise, in this waiting period of my life, I believe God is preparing Shaun for all that waits on him. As for me, I focus on my boys, on the business and on bettering myself to be the mother, the daughter, the colleague and the woman the people in my life deserves.

I’m considering touching on my past in the next entries, but I’m still debating it. It’s never good to dwell on the past, however many would argue that it’s a good way to heal completely. And maybe it would give better insight into my story? I wonder if such a thing is truly possible? The complete healing I mean… I find shoving it deep down and not dwelling on it works for me. Haha, let me just end this here before I qualify myself as a psychiatrist worst nightmare 😉

The confirmation

“…So I looked it up and I still get goosebumps just thinking about it…”

So how does one internalize “mysteriously” receiving a name? The logical side of my brain immediately started wrestling with my conviction that “Shaun” was a very direct answer to my prayer. Was it a name of a person I’m known with, or even secretly fancied, I would have dismissed it as exactly that… a figment of my imagination, or a desperate attempt in giving myself hope in something I simply didn’t understand. But this wasn’t the case, thus I started waiting on confirmations.

I didn’t have to wait long. A few days after receiving the name I was listening to the radio, lost in my own thoughts, on a long drive to one of my clients. Chuckling at the very idea of how on earth a name can be confirmed (obviously the logical side of my brain), my exact thought at that moment was “Murphy’s law I will now meet a Shaun at every turn” when I heard a lady speaking on the radio, talking about her son Shaun. I actually laughed out loud, even though my faith was on high alert. As I arrived at client, and this being an established client I often visit, a staff member I have not had previous contact with approached me to tell me about an encounter he had with a man named Shaun. I kid you not. This was significant in that the speaker didn’t really cross my path before, or after, this conversation. Nor had the tale anything to do with me. This time I didn’t laugh, it was surreal!

In that week alone I crossed the paths of at least a dozen Shauns. The irony. My logical brain argued that I probably were now only more aware of the name and thus took note, whereas before the name had absolutely no significance to me. Very fleetingly?… The thought crossed my mind to look up the meaning of Shaun, however with the hectic pace of my life I didn’t do it right away. I’m a staunch believer in name meanings. I’ve seen time and again how one way or the other, the meaning of your name is somehow visible in your characteristics and/or life. It’s definitely true in my life. Even though I only truly learned the true meaning of my name much later in my life, it certainly explained a lot.

I studied scripture intensely, trying to make sense of my experience, and toward the end of July 2016 I read a verse that truly resonated with me… James 1:17

Later that same day I finally told my sister about my “Shaun” revelation and she immediately asked me if I had looked up the meaning of the name. This time I didn’t wait. To be honest, I couldn’t understand why I haven’t done so when I initially had the thought. I’m not generally the kind of person that ignore my curiosity, especially with something that’s playing on my mind as much as it had. So I looked it up and I still get goosebumps just thinking about it. I then understood that I needed to read THAT verse first before seeing the name meaning, as it in itself was one powerful indisputable confirmation…

The name Shaun is an Irish baby name. In Irish the meaning of the name Shaun is: Irish: God is gracious; gift from God.

James 1:17 “every good and perfect gift is from above, coming down from the Father of the lights, with whom is no variation, or shadow of turning”

Poem : In remembrance of my daughter

“…a sound still vibrating 
In the dark horror of the night…”

In Fascination
I watch a red drop slither down my soul
thickly to unify
with the pool of ache
that shrieks your name in vain
to a tombstone
never lain

How many years
since i HEARD you fall
a sound still vibrating
In the dark horror of the night
When I scream silently
Wanting to forget
Needing to remember
Anything but the blood
Gurgling
Muting our plight

God how I miss you so!
Months of despair
Whilst everyone forget
I cannot
I will not
I am nothing
My core

like

your

body

 

DEAD