Lifting Up my Head

But you O Lord, are a shield about me, my glory and the lifter of my head.1.

For some reason, I felt a Eureka! moment coming on as soon as I read this passage. Somehow, things are beginning to make sense. Im not supposed to wish for a trouble free life, I mean, I’m supposed to imitate Christ (hopefully not all the way to crucifixion) and that means that troubles and challenges will come my way. To imitate Christ, I believe, is to accept with serenity, that someone else is in control of my life, and to trust, and to believe that that Someone loves me and wishes me no harm. This made me feel so much better; because it means that though I’m going through a very tough period, God is going to do beautiful things with my life, with my son’s life and his weaknesses.

Shields are used in war to protect the bearer of the shield from the barrage of arrows and swords bearing down on the person. God is my shield. The verse reminded me, that God would protect me from the onslaught of the enemy’s evil plans. “God is wayyyyyy ahead of you sister!” I said to myself after my meditations on this verse.

The reading reminded me again, of the little improvements we had noticed in my Paps. On Mother’s Day 2014, my little superhero sat on his own for about 2 minutes, completely able to hold himself up before he fell over. I wept like a child. It was a bitter-sweet moment- that he had been able to sit on his own was great, but for me to take such joy in an act that should have been mundane, seeing as he was 9months then, was so, so sad.  It was as if we’d taken giant steps forward, and the tide had swept in and effaced the footprints, rendering all our efforts practically nugatory.

While that still pains me, we are taking steps forward, albeit itty-bitty ones. Sometimes we go on tippy-toes, other times we are almost able to take a full step. The important thing is for us to forget the pains of the past, and move on, in search of the glory that lies ahead.

Our heads may be bowed low now, and really, who could blame us? There is no gainsaying it, our current situation is disheartening, I mean, it’s absolutely heartrending. But God has prompted me through His Word, that He is with me. Its easy to feel like you’re all alone when dealing with situations like this. Nobody around me knows what it is to raise a special- needs baby, especially when he was a “typical” baby for a few months . Nobody knows what it is to pray everyday that my son will smile at me, will gurgle and babble happily like he used to. Nobody, except God, that is.

God is  with me, and He will lift up not just my head, but my heart as well, of this I have no doubt because His word is ETERNALLY true. He IS my hiding place, and my shield, and I will hope in His word.2.

30/05/14

Notes

psalm, 3:3

psalm 119:114

His eye is on the sparrow

This post was written at the time when I first determined not to let the change in my circumstances overwhelm me anymore. I say first determined because I have been overwhelmed many times since that day, and I am sure there is more to come that will make me weep with despair…because I am only human. However much I attempt to hold myself up as a strong, warrior-mum, I’m only human. And I cry. I weep. I fear. I doubt.

But I rise.

And with each rising, I am stronger, and even more determined to make the best life I can for my little one. So when you read this post, don’t be deceived by the  upbeat-ness of my writings, I have railed at God many times since that day, I have been tossed and beaten and nearly drowned by the waves of doubt and fear that swell without warning. If you’re a Mama walking this same path, don’t feel too bad about your tears. We are learning to be tough, in a way that not many people have to, and we can be forgiven for the days when our spirits just cannot deal with any more.

This week ends the devotion writings of 2014, I hope that wherever you are Mama (and yes, Papa too (beware gender discrimination)) you are comforted by my writing, and you know that you are not alone, because #IWalkWithYou.

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“I SING, BECAUSE IM HAPPY

I SING BECAUSE I AM FREE

HIS EYE IS ON THE SPARROW

AND I KNOW HE WATCHES OVER ME…”

My reading for today 1, asked me to think of my struggles. It asked what I believe to be a most germane question: “do you need a place to hide… Someone to shelter you from life’s assaults?

I say with no fear of contradiction, that there is no greater assault from life than to endure the pains and aches of pregnancy, because of a desired and [reasonably] expected end that you will have a bouncy, healthy, baby who will smile, babble, and who will be up to antics and tricks that will make you collapse with laughter years later, and then to have that cup dashed from your lips. There is nothing worse than that!

Whether it’s because the little cutey did not make it, or like mine, began life as was expected, and then suddenly, without so much as a warning, or a by-your-leave, suffered irreversible damage to the brain, the pain is unbelievable! It is the kind of pain that can crush anyone, even one with a spirit as tough as mine.

It is easy, especially in the first few months, to think life is over, to wallow in the depths of despair, and yes, to even resent comfort from others, because how could they possibly know how you feel? How could they possibly think that saying “things will be okay”, or even worse, reciting the trite refrain “it is well” will make you feel any better? I found myself silently retorting a thousand times “no it is NOT well! It wont be well unless my son comes back to me, as he was”

But you know, Ive learnt that when they say “it is well” they are not downplaying or glossing over my feelings, they are trying to lift them, the only way they know how. “it is well” is not because they cant see that my Paps is not well, it is a song of faith that despite what things seem right now, it WILL BE well. But they are not waiting for the future, they are declaring what they ask for not to be a future event, but a present one.

So now I can say it is well, believing that it IS well. It is not because right now I’m dancing a merry jig, but because seeking shelter in my faith in God gives me strength. It is an inspiration to me, to not see my son and cry over how unresponsive he is, but to look at him and believe that I will see a miracle, and that God will do His will in our lives. Even if His plan is not for my son to see or walk or talk, He will give me a song to sing, He Will make me happy…so I sing it not as a future hope, but as a present event…it IS happening, I AM free; free from worry and fears, free from despair over Papi. It IS well!

June 12 2014

notes

1. Our Daily Bread, Jan 27, 2014

TAKING THE FALL

AS PROMISED there are two posts for this week to make up for the lost time. This post is from an interesting (and painful) experience I had 2 years ago, when Paps had just been diagnosed with CP post the infections etc etc (please see my earlier post Though Much Is Taken. for the back story), so things were still pretty fresh and my emotions were quite raw still. Call it what you will, but this experience helped me to deal with some of the fear and the pain, so today I share it with you, hoping and praying that if there is anyone slipping and falling, you will know that God has already hit the ground hard for you, and He has you cradled in His arms, so don’t worry. Nobody ever promised us that there would be no storms, the promise is that if Christ is in the vessel, we will SMILE at the storm.  So be at peace, let go and let God. If I had not tried it,  I would not be able to testify that His Word is true. Sometimes it is hard to see it, I would be lying if I said I’d never railed at God or doubted that He would see me through; but He IS there, my friend, and he #WalksWithYou.

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Today I was holding my Paapa in my arms, en route to the barber’s when practically at the entrance of the shop I tripped over some loose gravel and fell…hard!  The interesting thing about the fall though, was that I could hear myself exclaiming, and I could sort of see myself falling…if that makes any sense. It was a kind of out-of-body experience or something.

Anyway, so as I fell, all I could think of was how to protect my little boy, who is my whole world. I knew there was no way to avoid hitting the ground, but I also knew there was no way I was going to let him hit the ground, if I could help it.

Instantly, I twisted my body and broke his fall.

When we hit the ground, he started to cry and I was up in a trice! I could not care less about my bruises or my pant leg that had been ripped, or my aching elbow and shoulder. All I cared about was making sure that Paps was ok, that he had been spared the pains and bruises. To my relief, he was just fine…physically at least, though he was so shaken, he couldn’t stop crying.

For some strange reason, I heard the song “above all” in my mind: “…You took the fall, and thought of me above all” it was like an epiphany, I tell you. Somehow, it felt all kinds of weird; like God was revealing Himself to me through the unfortunate incident. You see, suddenly I had caught a glimpse of how much Jesus loves me. He had endured not a mere fall and skinned knees, He had endured a crucifixion! He had been beaten, publicly humiliated, mocked and abused because of me, and for me!

It was the strangest thing really. Here I was sore all over, trying to comfort a frightened baby, and yet having a profound spiritual moment at the same time!

Just as I had placed my son’s needs above mine, and as I had acted, instinctively, to make sure he did not get hurt, so God acted to protect me from the pain that would surely have been mine, had He not been willing to take the fall for me. Wow! What an amazing God! What an awesome feeling it is; to know that there is someone who will shelter you from life’s pains and sorrows; someone who puts me above His own desires, one who is willing to take the fall for me!

Jesus is so wonderful. I mean, what I feel for my son, and the lengths I’m willing to go to, to keep him safe, are but a microcosm of what He feels for me! And all I can think of is, if I, a mere mortal, can so love another, that I would be prepared to go through hellfire for him, how much more the Lord Jesus Christ, who though did not desire to be crucified, yet did as His Father bade Him, because of love.

Today’s experience has bolstered my faith, and I am more confident that we will find a way to overcome this challenge, because I am not alone. God has already gone before me, and has taken the fall because He loves me, above all.

 

MYA BARNES

24/05/14

UNCOMFORTABLE COMFORT

Hi Family,

Sorry for the long absence. I was too anxious, waiting and praying for my results (re: tough Bar Exams) that I could barely write.(btw I PASSED!!!! yaayyy!!!) This post was written sometime in July-August, (it is a testament to my nerves that I did not date it), and dedicated to the people in my life who bother to read about and do research on Paps’ condition, and in their own small ways, try to make our lives easier. In particular I want to dedicate it to Ms. Joan Selorm Tsorhe, who having inadvertently hurt me with an article she tagged me in, decided that she would learn about Papi’s condition by actually coming home to visit with us, and see for herself what life with him on a daily basis was like. She has begun to really and truly #walkwithus, and it is in thinking about how she has challenged herself to put her money where her mouth is, that this post was born. So Joan, cheers to you! And to my Dad, who has not had a full night’s rest since Papi got sick, sitting up sometimes till 4am reading up on CP and potential therapies, discussing them with me to see which ones are most viable, and serving as chief financier of any project I undertake for him…I have no words. You, my Papa, are a STAR.

I hope you learn something from today’s post, and really push to make life better for children and young persons with disability.

And as always,

#IWalkWithYou

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So this week has barely begun, but it has not begun well.

It always happens like this when I have to explain to well-meaning people the fine details of our lives with cerebral palsy.

It also brought me a topic I have wanted to write about for a long time: giving comfort to persons dealing with a diagnosis like brain damage, in particular cerebral palsy.

A lot of people hear our early stories, they cry with us, they sympathise, they promise to pray with us, but nobody ever does research on the condition, to try to understand how it occurs, in whom, what kind of therapies exist generally, and which ones are available in Ghana.  My guess is that this is actually too much for them; it is more commitment than they are willing to make.

It is easier to say how sorry one is that X has to go through this, than to ask  one how can be of help, proper help to X; it is easy to promise prayer than to go visit the person, see in real time, what it takes, what it costs to take care of, and to love a child with severe CP. Easy always to send messages of hope and remain aloof and untouched until the next heartrending post, when the messages of hope, prayer and sympathy will pour in again, from friends and family standing safely at a happy distance from trouble.

But CP is not malaria. It isn’t some minor infection like the kind that one expects from time to time in childhood. It isn’t a headache which will go away if “you drink lots of water and put a cold towel on your forehead while resting” (my mum’s go-to home remedy for headaches). It is a lifelong challenge, and depending on the severity, you can have a Stephen Hawkins or a child who may have severe learning difficulties, be visually impaired, unable to swallow on his own and needing a tube for feeding etc etc.  There are so many different manifestations of CP under the three main types of CP there are. But how many people, after reading and crying bother to read up about it? How many people look for parents of children with CP (if they know any), to ask intelligent questions (with sensitivity) in an effort to learn more, in an effort to understand how they can help?

There is nothing in Ghana for children with disability, nothing! In more developed countries, such children have Occupational Therapists, Physiotherapists with proper equipment (not the “appro-tech” type there are in our hospitals); in fact there are several different types of therapy- aqua therapy, equine therapy, Play therapy even! They may not be affordable, or easily accessible to everyone in those countries, but at least they exist. Here, apart from Physio and some small number of speech therapists, it is extremely difficult to find any other, and if they are there, well, the cost is enough to send even a person of my physical stature falling flat to the ground!

There is little to no equipment for physio. In Korle Bu, they use adaptive “appro-tech” equipment, and for children with disability, precision and comfort is everything. But when one is using papier-mâché standing frames, corner seats etc, that is very difficult to achieve; you should hear the children screaming in the Paediatric Physio area. The physiotherapists do their best, but one is only as good as the tools available, and what is available is not good.

For continuity, parents and carers must have some of this equipment at home, but not everyone can afford even the sub-standard equipment, especially if they have other children.

But where is the love, when it comes to concrete help? when it comes to backing sympathetic words with action?

And this lack of interest manifests itself in other ways. People always tell me not to worry, after all, have I not heard of Ms. Farida Bedwei? As soon as you say something like this, I lose interest. You immediately show that you do not wish to understand our life, you do not intend to go beyond superficial sorrow because in ten minutes of listening to me, you have found a solution! Hey presto, the sorrow is gone! Have you checked what type of CP Ms. Bedwei has? Do you know which type Paapa has? With a little bit of research, you would know that sometimes it depends on which part of the brain was damaged. What you do not know, dear well-meaning friend, is that sometimes by your lack of research and your careless Eureka! moment, you may inadvertently have inflicted more pain. When people say that to me, all I feel is pain; pain- because Paapa is non-verbal, has no vision, no mobility.  In fact, seeing him raise his hand is one of the biggest miracles we have had, because not so long ago, even that was a prayer topic.

Maybe that will change and things will improve, maybe it will not, but you do not know the pain of coming home to a silent house, to discover your son wide awake sitting there with vacant, wandering eyes. You do not know the longing in my heart to hear “Mama” or “Papa” or “hello” or anything even remotely resembling some language, something I can understand; you do not know…you cannot! You don’t know the pain of asking a question and responding to it myself on his behalf, or having his other carer adopting a tiny voice and answering “yes Mummy, I had a good day” so don’t you wave some name you pull out of the slim book of success stories after 10 minutes of listening to parents of a child with CP, in an effort to comfort them, you may be doing the exact opposite!

You may be reminding them how far off their own success may be; you may be driving home, even more cruelly, how bad their situation is, that if they “had to have a child with CP,” they had to go pick one with the most extreme case. Last week, a therapist referred to Paps as a “textbook case”, the kind you read of but you don’t really expect to see too many of. It hurt, I knew it was not altogether true, because I’d found parents with kids facing even bigger challenges than Paps, but it still hurt.

Other people send me articles of children, especially of severely visually-impaired children who through some surgery or some new technology have had their vision restored or improved dramatically, as part of the hope-giving support. But not even one of them has asked exactly why Paps does not see. So I’ll tell you. No, it is not because his eyes are bad, there is nothing wrong with his eyes, the paediatric ophthalmologist pronounced them to be perfect! It’s his brain that is not sending messages to the eyes, the connection from the brain to the eye is what is damaged. So far, nobody has given us any hope that that can be fixed, but I have my own hopes, my own prayers, that technology will develop and medical science will find answers that as yet, remain elusive. So friends, your articles caused me pain, your “positivity” only wrought negativity.

But I do not blame you, you did not know any better.

But you can do better. Deliberate ignorance is dishonesty. It says that you know you will not like what you will find, but in order to maintain that happy distance, you will deliberately keep from learning more, from aching, truly aching to help in ways that matter. You prefer the comfort of your insulation to facing the cold hard truths, the frustrations that we, as parents of children with special needs, must face.

If you read a blog post about disability, and beyond the generic words of comfort and quick offers of prayer, you wish to help, please, first do your research. You’ll be amazed by the stories you will find- Heartbreaking stories, but in all bar none, you will find amazing courage, unrelenting spirit and such deep love for the children as to make you weep from the sheer intensity of feelings. Your heart will break, but it will be put together again, and it will be deeper, and so elastic as to feel love that one has never felt before. But you must be willing to put yourself through the pain first.

If you would be a comfort to me, my friend, walk the path with me.

UNPLANNING PLANS

 

hello fam!

It has been a  couple of weeks since my last post. These past weeks have been rather emotionally-heavy- I turned 30,(can you imagine? LOL!) and a week later, Papi turned 3! I will be updating you on these events later.

In the meantime though, I leave you with this post that I suspect describes what everyone will do at some point in their lives: stop,  reflect,(not collaborate and listen! 😀 😀 ) regroup, and start again- a little bent, a little less chirpy but (if we try), with shoulders squared and a determined (or obstinate, as you will) toss of the head.

I am a Planner. I make lists for everything, tick off everything to be sure I’m  on track, and draw a smiley face at the bottom when one list is completed! Even my lists have sub lists! So it was extremely difficult, doing what I had to do when Paps fell sick.

But there will be new plans, new dreams, and new lists to make- I’m just gonna have to wait.

 

xx

#IWalkWithYou

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Even before my teenage years, I had planned my university degrees and I had charted my career path. I always thought I knew exactly where I was headed at any point in time. But in my twenties, my plans began to unravel, my likes changed, my dreams too, for a brief period, and for the very first time, I was unsure of myself, and of my future. I managed to rally round, went back to school to study law, and true to form, before I had even passed my first exam, I had planned my career as a prosecutor and academic (yes, somehow I was going to be able to do both).

In sum, I plan everything way ahead of time. I rarely am caught off-guard because I’m prepared sometimes months ahead, with plans A, B, and C to cater for “just in cases.” In fact, by the time Paapa was four months old, I was already researching schools for him so I would not be rushing when he was ready for school.

But I never planned for a child with brain damage leading to cerebral palsy. How could I have? Who ordinarily plans to have a baby, and makes alternative plans to include “what if the baby does not get enough oxygen to her brain and suffers damage to the brain?”

I have had to un-plan everything. Talk about interruption! I don’t know whether the affected part involves his intellectual capacity, let alone when he can go to school. I put up posters of much-loved characters in his room, and bought toys, but I do not know if my Paps will ever regain his vision. I even planned his menu for weaning…but its difficult for him to swallow even smooth watery purees much less chunky stuff.

It’s hard…sometimes, unbearably so. But I have found solace in biblical stories of people whose lives were just as suddenly, and as extensively interrupted. Mary, a virgin, who is suddenly informed (without so much as a by-your-leave) that she would be pregnant, or Job, who lost everything in a very sudden change of fortunes, Saul, a zealous persecutor of Christians, whose life was changed when he was blinded en route to Damascus, where he had planned to arrest more Christians. In fact, Jonah was so frightened by the interruption in his life that he ran away! But God used these interruptions to bring about amazing things, things of which we speak, more than 2000 years later! Mary’s baby changed the world forever, Job is an inspiration to people, Saul became Paul, and changed the course of Christianity, and through Jonah, a people repented and were saved from the wrath of God.

Once again, my plans have unraveled, and I am unsure of myself, and of my future. But God knows exactly where my future leads, and through this interruption, I KNOW He will work such awesome things that will inspire others. I will rally round again, but this time, I will strive to be content to let God do the planning.

 

MAAME YAA BARNES

24/05/14

Unanswered Prayer

Hi guys,

A bit of a sad day for me today, rereading this just took me back 2 years ago. But at the same time, there is a feeling of… not quite sure how to describe it…its like wonder/amazement tinged with pride, when I look back on the journey thus far.

3y3 Awurade na way3.

#IWalkWithYou

 

 

Have you ever felt a “great sorrow and unceasing anguish” *1 in your heart? Have you ever cried out to God, cried out so hard you fell back, limp and drained; almost lifeless even because there was nothing left with which to cry? I have.

I have felt like my life was over. Melodramatic? Maybe, but accurate.

I have never felt the pain and sorrow I felt when I was told about my son’s brain damage, and the attendant consequences. In that instant I truly felt that I would never be the same again.

All the dreams I’d had of a happy child who would teeter after me, clutch my hands with grubby toddler’s fingers after playing outside, a child who would garble unintelligibly until he learnt his first word, “mama”, came rushing at me in a non chronological manner. They rushed at me, attacking me viciously, till I wept for my poor vain heart, a heart that, like other human hearts, had planned with certainties and expectations of perfection. All I had ever prayed for was for my baby to be healthy. I never asked for “a boy, Lord, gimme a boy” or a “cute little girl” whose barely-covered scalp I would decorate like I would a Christmas tree; no, I only asked that my baby be healthy. In my vanity, I thought it was a done deal; after all, I was not asking for that much.

But God chose not to answer my prayer…at least, not in the way I had hoped. Instead, He did according to His plan, which I do not understand, because His ways are not my ways, nor are His thoughts my thoughts. *2 He gave me a not-so –healthy son, a son who may never be able to fulfill the dreams that I had had for him, but who is the most amazing little boy there ever was. He is a tough little kid, that one, and with the heart of a warrior.

Being Paapa’s mother has taught me major lessons; the most important ones being to trust in God, and to take each day, one step at a time. If you know me, you will know that that is probably the hardest thing for me to do: to just let someone else be in control, and to take things as they come. I have gained such strength, such awesome inner strength, more than I ever thought I was capable of, by watching my boy brave unbearable pain- countless injections, lumbar punctures, blood tests, thousands of IV drugs, physiotherapy- at only 6 months.

So though I do not know why He has done as He has, and though I may never understand why, I do know that He is watching His purpose out,*3 and I understand that what He will do is even more than what I prayed for. I understand that God has a plan for my son, a plan to give him a future and a hope *4 greater than anything I could have conceived or dreamt for him.

So instead of holding on to my dreams, and feeling crushed that they will not materialize, I have asked God to teach more about myself, to teach me other lessons. I have asked God to give me His dream…and to help me watch, and wait for Him to do His perfect will.

 

Maame Yaa Barnes

22/05/14

 

Notes

1.  Rom 9: 2
2. Isaiah 55: 8-9
3. MHB 812
4. Jeremiah 29: 11

AWAY DAY

This week I decided to post two entries, one which is in keeping with the theme of reflections on devotion in May-June 2014, and this one, which I wrote just before midnight on Saturday evening, after the beach trip. I was preparing to go to bed when it struck me that for the first time in 2 years, seeing happy, healthy peers of Paapa did not faze me at all, and I figured the feeling was worth recording, hence today’s post.

I know sometimes it feels like things will never get better, and sometimes you wonder if you’ll ever smile again. I promise you, you will. But you have to let yourself go through the motions, you have to go through the full process of grieving and healing; allow yourself to grieve Mama, there’s nothing to be ashamed of. You have every right to grieve. And one day, when you least expect it, you will throw your head back, slap your thighs, and laugh at some joke, and you will marvel how good it feels, just to be lighthearted again.

That day will come, Mama, that day will come when your pain will also take an “away day” like mine did on Saturday, and when it does Live it, Love it!

#IWalkWithYou

ps. The picture above is not Paapa doing the “peace” sign, one of the challenges we have with his cp is getting him to put his hands down (he’s very spastic) so he usually has his hands in the getting-to-do-the-“kentucky-fried-chicken-and-a-pizza-hut”- dance move (any Girl Guides in the house?!!) But at least in this picture, the pose works! #CoolDudeCoolMum

#WhosTheBoss

#ReturnOfThePaps

#RedefiningBeachBabes

 

sup G?

“AWAY DAY”

Today we went for a staff “away day” trip to the beach, and we decided to take Paps along, as he had never been to the beach before.

As you can imagine, we fretted over, worried about, and debated over and over again, the wisdom of taking the young man along, but since I’d promised him that he would go to the beach sometime soon,  in the end  we figured we’d at least give it a try, see how he took it.

Instead of joining the office bus, we decided to drive just in case we had to leave to avoid a total meltdown if Paapa got tired, uncomfortable or frightened by too many new sounds. I just prayed to God that our little “experiment” would not lead to any difficulties for the young man, (he has enough on a daily basis to deal with).

Ever since cp changed our lives, we’ve lived in dread of invitations to family get-togethers aka “bottom tree”, or some other public event (even taking Paapa to the hospital for weighing). I used to pretend Papa was unresponsive to some kindly relative or friendly person because he was sleepy or  like many children, was a little disoriented or unfriendly after having recently woken up. Sometimes I would try to weasel out of attending some of the functions, in order to avoid the pain and angst of seeing all the kids running around, screaming, dancing, having the time of their lives, while we were stuck indoors because Paapa does not enjoy loud sounds and generally dislikes parties and large gatherings. But today,  it never once occurred to me, to feel sad,or worried about how we would feel if we saw other kids of Pap’s age running around rambunctiously, eating, drinking what everyone else ate and drank, their parents being free to enjoy themselves and generally, everyone else having a good time apart from us.

I think it is because we are healing. Healing, not healed, because there will always be that bit of sorrow that will never go away, sorrow, for all that we lost, all the broken dreams, all the “joys of parenthood” that we did not experience- the gurgling, the cooing, the face, alit with pleasure at seeing “Mummy” or “Papa”, the crawling, the first hesitant steps… … For these and many others, there will be some sadness, but it will no longer hold us captive the way it did for 2 years, it will not prevent us from enjoying life, from teaching our son to experience as much as he can, in the best way that he possibly can.

We will not allow it to cripple us.

Before I come across as some tough, supermum, I have a confession to make: I’m still not good with birthdays. Those are some of the most difficult days in the year. Coming from a family as large as mine, and belonging to the current group of young parents, there are several kids’ parties to which we are invited. In the past, we would debate whether to attend or not,  and cry all through the days immediately leading up to the date of the party, and pray everyday that God would help us to control ourselves, to restrain the tears that were (and still are) never too far away.

Recently, I attended a first birthday party, and as bad as it sounds to admit it, I was actually relieved that Paapa had suddenly become ill that very morning, thereby sparing me from having to take him along, and spend the time comparing him with the other children, and myself with the other mothers, find us both inadequate and waste the rest of the week crying. Even with that one, after getting home, I threw myself a pity party and offloaded the heaviness in my chest.

I don’t think it ever gets easier; but I tell you, we get stronger, and we get wiser.

These days, I have decided to choose which birthdays to attend, I refuse to deal with the guilt that inevitably follows the bouts of crying, so like my battles, I will pick which parties I am strong enough to handle. If you do not see us at yours, please forgive us; we gain more strength everyday, and in time we will conquer all our demons and be free to go wherever, whenever!

Today though, allow me to bask in the warmth of this victory. I was not sad all day, even though there were children of or about Paps’ age there. All I cared about was my son’s comfort, and I fed him his nice pureed yam and vegetable stew without a thought to what people would think or say about our unusual eating process. Even giving him water and juice in the usual way we do at home, i.e. via a syringe, which I am usually uncomfortable about doing when we are out in public, did not bother me as much as it used to.

Slowly, but ever so surely, our hearts are mending, and “…it will be hard we know, and the road will be muddy and rough, but we’ll get there, Heaven knows that we will get there, we know we will!”

Mya Barnes

16th July, 2016

FLYING WITHOUT WINGS

David wrote, “Oh that I had wings like a dove, I would fly away and be at rest.*1

Like him I too feel like flying away from my problems. When I feel beleaguered by life’s challenges, when I think of balancing my work as a Law student, as a wife, and as a mother to an extra-special child with extra-special needs, I want to run away. Sometimes I’ve found myself wishing, that like the wall geckos, I could crawl up the walls and disappear into some obscure corner, where life cannot find me to throw obstacles at me.

Sometimes I feel like I’m a contestant on “Gladiators”*2 where there are heavily muscled men and women waiting to pummel me on every course.

You see, had Paapa been born that way, maybe I wouldn’t feel so bad…maybe, just maybe. But to have had an apparently “normal” baby for exactly 6months to the date of his birth, and then the very next day discover that he was not as healthy as we’d thought, was like someone had played a very cruel trick on me.

To have had him smile whenever he saw me come home, and see the joy on his face when I sang “kweku Bonsu’s gone to sea”*3 and then to suddenly get no sign of recognition, either of me or of his hitherto favourite song was absolutely heartbreaking. To have had him refuse breast milk at two months, and then four months later, see his rooting instinct back in full force was…difficult, to say the least. But what hurt most was to have to teach him to suckle again. Even that, he had forgotten. That’s when it really hit me that my son was a newborn all over again, at 6 months. To say that I was in despair is to grossly misdescribe, to the point of distortion, what I felt in those months.

But just like David, there is no escaping life. This is my call to service, and I can only turn to faith, and cry out to my God, to help me get through the toughest moments of my life. He has not given me a challenge, He has given me a gift; a gift made more precious because he requires special attention and care. Because He has done this, He will also give me grace to show love to my little one, to let him know that he is just as wonderful as any other child, although he may have to do things a bit different, or put in a little more effort than they.

God shares whatever burdens we may have with us, that is why we are asked to cast our burdens on the Lord, and He will sustain us.*4 I will fly to God, and He will enfold me in His arms, because He loves me.

Like the Psalmist, I lift up mine eyes unto the hills, because I know that my help comes from the Lord.*5

MYA BARNES

21/05/2014

notes

1.  Ps 55: 6.
2. game show with  obstacle courses, where ordinary contestants had were pitted against well-trained and extremely fit men and women- the “Gladiators”.
3.   I replaced the name Bobby Shafto in the popular children’s rhyme/song.
4.  Psalm 55 : 22.
5.  paraphrased from Psalm 121.

FLAWED

I’m BAAAACCCKK!

it’s been a bit of a crazy time, I’m up to my neck in unfinished projects and still not quite done with school. Hmm, no rest for the wicked! (dramatic sigh)

As I said in a previous post I will be sharing some pieces i wrote after devotion in the months of May-June 2014.There are a number of footnotes, but my technologically-challenged self couldn’t figure out how to transfer them onto this blog page, can anyone help? Please forgive the big numbers, they make reading kinda annoying, but I thought the notes are necessary, so that if anyone would like to read the source they can.

When I began writing, we were only 2 months into our CP journey, confused, frustrated,and hurting like nobody’s business! I was struggling with my faith, and I put these thoughts down in an effort to make faith win (as if it depended entirely my own strength).

I did stop writing for a while, because the battle was wearing me out, the daily challenges I faced constantly eroded my faith, and I could not bear it any longer. But I am happy to say that God reminded me that my strength was not enough, to win the battle against despair and depression, I had to go back to Base, go back to Him. That in itself, took a lot of doing, a lot of pushing, a lot of prayer. We have not fully arrived, but I can say that we have made significant headway, and we can smile through our tears at this never-ending storm.

I hope that by reading these thoughts, “some poor fainting, struggling seaman”…may be rescued, may be saved.

#IWalkWithYou

 

 

Flawed *1

My son is flawed. At least, to the human eye he is. He lacks the most important thing in our body, that which controls every iota of our lives- a fully functional brain. He currently has no vision-not because he is blind per se, but because his brain is unable to transmit images and interpret them for what they are. He has big, beautiful, brown eyes…sightless.

He is unable to sit unaided or for long periods, because he lacks trunk control. His muscles are weak and droopy, and yet stiff and unyielding by turns. He makes none of those cute -baby- happy- gurgling- sounds. There is no baby laughter, no baby cooing…only an unnatural stillness.

But to God, this little boy, now 9months old, is perfect. He is perfect because it is in what human eyes perceive as weakness that God’s strength is glorified.*2

He is perfect because God made him in His own image,*3  and God is not flawed.

Moses, Jacob, Gideon, Peter, Paul….they all were flawed people. One lacking oratory skills*4  the second deceitful*5, another lacking faith,*6 one abandoned his friend*7 and the last was intolerant of others’ religious beliefs.*8  But God used them in mighty ways; He used their weakness to show His strength, and to this day these biblical characters continue to be channels by which God is glorified.

I too, am flawed, for I have lacked faith in God during these trying times, and I have questioned, indeed, I have railed at God. I have indulged in the deepest self-pity, and I have compared myself to other women…and found myself lacking.

But I have read His word, and I choose to believe that in spite of all of this, all things will work together for our good because we love the Lord.*9 And so I hold on, believing that God’s strength will be made perfect in my son’s weakness*10…. and in mine.

MAAME YAA BARNES

20/05/14

 

notes

1. This writing is based on the Daily Bread reading for February 10, 2014, ‘Flawed’.

2.  2 Corinthians 12: 9.

3. Psalm 139, Gen 1:27

4.  Ex 4 :10, some even argue that he stuttered.

5.  Gen 27: 1-29

6.  Judg 6:39

7.  Mk 14:66-72

8. The story of Saul who persecuted Christians until God changed his heart…and his name to Paul. (see Acts 9: 1-19). He is one of the most read, quoted and admired Biblical writers.

9.  Romans 8:28

10.  2^nd Corinthians 12:9