Why I do it

by Maame Yaa A. Mensa-Bonsu, for her son, Papi

I look at your face, look into your sightless eyes,
With your pupils
 Darting
 everywhere,
But focusing nowhere…
And I ask myself,
 why do you do it?

I watch you, struggling to keep your head up, we
Fight for five seconds where
your head is up
Where you finally succeed at doing what 6-month old babies do
effortlessly,
And I wonder why I do it

I hear your sigh, loud and heavy,
Like an old man, tired after a long day,
I listen out for a response to my customary
“Hello my son”
Knowing my reward is only deafening silence,
And I doubt if I should do it

I turn my head, crack my neck,
bone-tired, 
thirty-something 
but feel twenty years older,
I think of the disruptions to my dreams- family, career, 
My life-
And I am not sure if I can do it…

Then
I see you lift your head up,
 after a long battle with your muscles,
I watch as you turn your head slowly, 
trying to identify where my voice is coming from,
I hear you sigh loudly, 
to catch my attention when you want some ‘mummy and me’ time
I catch your grin when you recognize my voice,
And your laughter, infinitely precious, but rarely heard
And I know

You are why I do it.

Christmas cheer!(you wouldn’t think it from the pic! :) )

So… this is Ewuras’s first proper Christmas (Minsman) as she calls it) and in a way it feels like our first christmas with kids too. The guilt continues to plague us though. It feels a little wrong, to take such delight in her discoveries, to revel in the joy she finds in the giant Christmas tree standing awkwardly in my little living room…to enjoy the holidays in the eyes of the little one, when we have been unable to do that for the past 5 Christmasses.

I know, I know, I have nothing to be sorry for, nothing I ought to feel guilty about. Logically, rationally, I know this, and I agree. But still it lingers.

I got her a bubble machine as part of her Christmas gifts. You should see her face light up when the machine starts whirring and the bubbles float all over the place. I can’t help but look at Paapa and wish he could see them too, and play “catch the bubbles!” with us. I would love to buy him something that frivolous, just for the heck of it, but then I wonder what good it would do him. At the same time, I hate that all his gifts have some specific utility, some function related to his needs, and that does make me sad a bit. Like I got them a trampoline (again, Minsman!); and for Ewuraa, I thought “she’ll have such fun bouncing up and down” but for Paps, I thought “hopefully, it will be useful for learning balance and switching up his physiotherapy a bit”

But on a smiley note, I was singing “Away in a manger” which used to be Paapa’s favourite carol. I figured this year, I was starting all over again, teaching them carols, so I begun, as usual in November. As soon as I finished the first line of the first verse, Paapa jerked up, turned his ear slowly towards me, (like he was listening hard), and then began to smile. He had the broadest grin on his face the entire time! He had not forgotten it, and I was so happy I sang it at least twice more! I have longed for a time when he recognises Christmas carols and can participate, in his own way, in the festivities, and this year, I got something, Praise God!

I think this year our hearts are lighter, and it feels good! I probably will always feel some guilt and will second-guess myself over whether I am treating them differently, or favouring one over the other, but I also refuse to deny myself the joy of seeing one of my children attain the milestones etc.  Both Ewuraa and Paapa will be starting school in the coming year. I will keep y’all updated on the highs and lows of this new phase of our lives. It’s bound to be an interesting year for sure!

I look forward to 2019, I pray that it will be year of peace, joy, love, and laughter in my home and yours. I pray that Paapa will keep making progress and keep soldiering on, and Ewuraa will keep bringing light into our home!

Thank you for reading my blog. A special mention to you who subscribed, I thank you for wanting to #walkwithme. Merry Christmas and a Happy New Year to you all! See you in 2019!

 

Ps. I had to persuade her to stand still for the pic with a small pac of M&Ms. Guess I’m not as creative a parent as I had thought!

#IWalkWithYou

 

A special kind of love

“And think not you can direct the course of love, for love, if it finds you worthy, directs your course.” – Kahlil Gibran*1

This is so true. At least in my experience, it is.

As soon as I read it, it resonated with something within me; it felt so familiar, like I had known this quote from ‘way back when’, rather than from a facebook post I just read. 

This quote describes what it is to be a special needs parent. Being a parent to a child with special needs, requires you to have a bigger-than-normal heart; to be more patient than Job (who I argue wasn’t really that patient), more creative and “out of the box”, more tenacious, and more courageous than any warrior. These aren’t qualities that are inherent in everybody, and even where they naturally exist, they are certainly not in such degrees. 

The love you have for your special needs child, if you decide to let yourself love, is a force that changes the course of your life. In my case, Paapa has redirected my life in every way possible. It’s as if once I chose to love him, (and I firmly believe that love is a conscious choice), that was the end of my control. Love took over, was a palpable force that would not let anything stand in its way.  My priorities, notions about family, happiness, success, faith…everything changed, including the course of my career. I never thought I would be a disability rights advocate and researcher. When I was contemplating doing postgraduate psychology, I eventually narrowed my choices to studying children with disabilities/special needs ed., or “reconstructing” the minds of child soldiers in post conflict zones, and even there, had I not moved into law,  I may well have gone with the latter area. I definitely was not thinking about disability rights/ conditions of life/ society’s perceptions of Persons with Disabilities when I began studying law. My favourite subjects were Jurisprudence and Criminal Law, and for a while I thought I was headed to the AG’s Dept to make sure the bad guys were dealt with, and in my leisure time, I would indulge in some Dworkin/ Hart/ Rawls/Raz etc reading!

It took one child, one life-changing condition, to properly direct my focus. For the first time, there was somebody I loved in a way I never had before. And because of this love, my interests, wants, needs all changed. Now, I want to move, to do something,  to make a difference in the lives of children &persons with disabilities, their families and caregivers.  As an academic, that means undertaking research, seeking to influence policy &/legislation on disability, generating enough material on different issues relating to disability in order to push the discourse on disabilities (particularly as it impacts children and the family), and change the current (mostly) negative narrative. For me it means promoting a language & policy of disability that recognises the need for inclusion, respect for diversity, acknowledges that PWDs and their families, can be, if properly and appropriately empowered, effective and important contributors to Ghana’s development.

I find that there is a passion for my work now, that I did not have before. My focus is grounded in a way that is different from what it was before. In school, I was an excellent student first because there are no other options in my family, where academic/other mediocrity is taboo (lol), and then also for my own pride, I guess. Now,  I no longer want to excel because I am expected to, rather, I have to excel to be an effective force in driving policy in the direction I mentioned above.

I used to be afraid of being “the weakest link” in the rather strong chain that is my family, and that fear propelled me to work ridiculously hard in school. Now, I invest time, other resources in my work,  because I have a goal that is bigger than me, society/family standards, awards / laurels, and indeed, bigger even than my Paps.

The work has just begun, and with disability being still an “evolving concept”*2  I know that it is far from complete. But I don’t mind the small steps; this is my way of “brightening the corner”*3 where I am.  

There are so many things that I want to do now in disability research, rights, and policy, and I pray that I will have the strength, and the passion to do them all. 

If this is truly what Love can do, then I am privileged that love found me worthy. 

 

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*1: I saw this quote on the Facebook wall of an old WGHS classmate. Jamila Abdulai, thank you for writing this today, it has had a huge impact on me.

*2. The Preamble to the Convention on the Rights of Persons with Disabilities

*3. From the hymn, “Brighten the corner where you are”

* As always, I #Walkwithyou.

Almost did count

 

We almost lost Paapa.

As I mentioned in earlier posts, he got so sick after his first surgery, and it looked like nobody could figure out exactly what was wrong. We battled infection after infection, and each time, his temperature spiked higher and higher!

It has been a rugged few months for us. The last time i rushed him back to the hospital (temp over 40 degrees celsius).  He was so weak, so frail, all head and bones. We were truly afraid that time.

He had had so many different drugs prescribed and pumped into him, yet infection after infection ravaged his systems, and we just didn’t know what to do. His veins all collapsed so that after a while they couldn’t even administer the drugs intravenously, he was so weak he wasn’t willing or able to swallow much. we battled dehydration, poor nutrition, increased spasticity etc.

The poor boy has had more injections and IVs than any 3 year old should. He was so tired of crying that at some point he stopped crying when the doctors kept looking for veins for the IV drugs. He would whimper for a bit then just lay there like “I’m done, do your worst” . It got so bad that after a while, no doctor  wanted to be the one to be tasked with finding a line for him, because it hurt them to have to put needles all over him just to find one viable line. When they found one, rarely did it last longer than 3 days.

I cried, i prayed, I cried some more. I remember one time i hysterically sobbed to my husband, “if God is going to take him away, why doesn’t he just do so, why must my boy suffer so? if he has to die why cant he go in peace? why do they have to hurt him so much?

I must confess that at some point I gave up. I began to pray that God’s will should be done, and that if it was to be the end, then it should come quickly so that he would not suffer anymore. I told people who were praying with me that I was too low to pray, so they should stand in for me. I just couldn’t go on anymore. Between having a new baby and the pain of a second CS, and shuttling back and forth from home- hospital-home, getting no rest between because of course, like every self-respecting newborn, the little Miss Barnes would not sleep much or for very long.

Outwardly, I smiled, and when asked how I was coping, Id say “ok” or “ok ara” or “we dey, how for do” . Internally though, I was a hot mess. I was not eating well, sometimes I could not eat at all,so initially i was producing very little milk, I was not sleeping well, I was not taking care of myself at all.

I remember going to see Paps at the hospital one day, and doing what I normally do when I really need to speak to him – I spoke to his spirit.( I truly believe that even as his physical body is not able to do much, his spirit understands when we speak to him.) I mentioned his name several times till he was able to turn his head towards me, and i told him that we loved him very much. I said to him to fight back and not to give up on me. I said “ Paps, you are my warrior son; i truly believe with all my heart that you can hear me, and more, that you can understand what I’m saying. Please fight for me. Fight back, don’t let this infection win. You;ve won bigger battles than this one, and I know that you can do it this time too. Im sorry for giving up on you, for not holding on to my faith. Im praying for you my love, God will answer us, and will heal you. But you need to fight. Lucha, amorcito, tienes que luchar porque tienes un espiritu muy valiente, y podemos vencer este problema! No te des por vencido, hijo mio, eso nunca! (fight, my love, you have to fight because you’re very brave and we can overcome this! Don’t you ever give up my son!) Then I prayed over him, read him some verses  and sang some of our favourite hymns to him.

He fought, and gracias a Dios, he won! But I don’t think my heart  or my head have recovered yet from this year’s drama. I can only pray that the rest of the year will go easy on all of us.

So to everyone who came by when Paps was in the hospital, to all my prayer partners (and there are a lot of them), to you who came to sit with me a bit and check on me when the baby came, a heartfelt thank you to you all. You didn’t know that besides your presence and your gifts, you also helped to re-stabilise my emotions, and made me refocus and regain strength.

To those very special people in whom I confide, and to whom I can lay my soul bare, and who do not recoil from the ugliness and the pain that often takes root there, I owe a debt of gratitude, and I thank God for all of you; angels who walk with me.

on birthdays and then some

#IWalkWithYou

Dear Paapa,

Today i went to S’s birthday party- her 1st birthday. The birthday girl was happily tottering around, crashing joyfully into her father’s arms, hanging on to her mum’s hand…and why not? she is healthy, hale and hearty! she was the belle of the ball, utterly cute in a beautiful ballerina-type pink dress with a matching headband, and the whole world (or at least her adoring parents and guests) at her feet.

How my heart ached Papi. Not because i was not happy for them, no, you know your mother’s heart. But because it brought back painful memories of your birthdays. On your first birthday I was so sad, but as usual, I was trying to hide it from everyone because everyone was trying their hardest to be positive and happy and excited.

I saw, from the corner of my eye, your Grandpa A who I had earlier heard boast about T being able to walk, put T down so he could show him off…before someone quickly reminded him that it was insensitive on his part so to do, whereupon he grabbed T quickly and said never mind, while swiftly changing topics and casting furtive looks about him, hoping that his faux pas had gone relatively unnoticed.

But it hadn’t.

And it hurt.

I suppose it was rather gamely of T to be rather unfriendly and sleepy all through the party, so that the marked differences between you two were subdued significantly; it saved me a lot of awkwardness and no small amount of embarrassment and yes, shame.

Shame that I had failed you, shame that something that looked so achievable had eluded me…as if everyone had sat the exam for some “bird course” and all had passed…but me.

I hurt Papi, I hurt really bad, I hurt over all the dreams that have died such an inglorious death, I hurt over all the hopes and aspirations I had stored away for you, my firstborn son. I hurt over the looks of people, known and unfamiliar, looks of pity, some of sympathy, looks of bewilderment…and not a few “wtf-is up-with-this-kid-“looks also.

I hurt over what feels like unanswered prayer.

I feel a wave of self-pity rush over me…threatening to engulf me and bury me within its icy grasp. But 2 weeks to the most important exams of my life so far, as usual, I have to put it aside, and force myself to move on, to pretend it doesn’t hurt.

But it does.

21/05/2016

Untitled

Hi Everyone!

I wrote this without a title, because at the time, I was just swamped with too many emotions to contain within, and I needed an outlet. I did not even realise I was writing a blog post at the time, I just needed to get something out of me, damnit! (pardon the cussing).  So when I decided to post this, I got to the page and daw “TITLE” and wondered  what on earth I would put there, and as you can see, I came up with zero. How does one bottle all those emotions into one pithy phrase?

Ah well.

#IWalkWithYou.(Still)

***********************************************************************************

Its been nearly three weeks since I had  Ewuraa, but unfortunately she has spent nearly all this time in the hospital, and it isn’t because she is ill, but because Paps is. We have been in hospital practically every day since 15th March. In fact, from then till today 4th May, we have spent less than two weeks out of the hospital.

It would not be so bad if he had remained there all through, I guess we could have built some kind of routine around the hospital, and also had the confidence that whatever was wrong would be fixed. But he is in for a week, he is discharged, we go home jubilant, two or three days later, I would have to rush him back. The first week was for his surgery, for hip dislocation which is due to the cerebral palsy. I have never seen anybody in as much pain as he was prior to the surgery. There were times I would have to hold his leg down for as long as eight hours so that we could get some sleep. If I had to go to the bathroom (and being pregnant, I often did), I would wake his dad up to replace me until i returned.If I was too tired to hold his leg down for too long, his father would lift him onto his chest, all 16kg of him, and that is how they would sleep, all through the night. It has been a nightmare in our home since October 2016 when the leg jerking began. He had a bone infection on the right hip, and a dislocation in both, but the left side was worse, so the surgeon decided to start with the left leg.

He warned me about the stress of caring for a child post op, and advised that I wait till after delivery when things were less stressful, but Paps was in so much pain, nobody was getting any sleep, moving him, bathing, dressing him were all such painful experiences for us all that in the end we opted to do the surgery when I was 34 weeks along, and boy, the doctor wasn’t kidding about the stress!

He has been so sick, he literally is all head and bones now, It is frightening to see just how little is left of my chubby little boy. you can teach a child to count using his ribs. his collarbones jut out horribly. He has bed sores from lying on his back for so long, and his cast was cutting into his flesh and has left sores on his hips also. Its a terrible sight, one that is traumatising for everyone, so you can imagine how I feel when I see my precious son lying there helplessly, eyes blank, mouth open.

There have been times I just wanted to give up. How many trials can one heart stand? How many times will I have to watch my son go through countless needles, terrifying experiences etc? how many more of these hospital trips will i have to endure?

At some point I was praying that I would not miscarry, because the amount of stress I was under, I thought I would surely go into early labour or something. But God kept me, I don’t know how, but He did (cos it definitely was not by my strength or anything).

Even the day I had the baby, Paps was lying in hospital, so I requested that I be put in the room next to his, so that I could monitor him. So after my second cesarean section, day 1, I began the painful walk back and forth, shuffling from one room to the other, checking on my children. I had her on Monday, on Wednesday, I went to bathe Paps myself because he was having a hard time adjusting to so many strangers around him ( his nanny had abandoned ship 2 days before he was admitted i.e. a week before by then).

I thought 2013-2014 was difficult, but those days of clutching my belly and moving back and forth from his room to mine can rival some of those painful days of that period.

We were all discharged (Paps, baby and I) on Mundy Thursday. We looked forward to a peaceful, restful Easter weekend, but we ended up returning to hospital on Saturday afternoon, and again Easter Sunday evening when we were admitted again. And so began the next round of back and forth, this time, baby in hand (or more truthfully, in car seat) we run shifts.  His dad did nights, his new nanny relieved Papa at 530 am, and I joined her between 1030 and 4pm.

The most recent bout of sickness,, we rushed him back to the hospital when he registered a temperature of 40.3 (degrees celsius). This was less than a week after he had been discharged from the hospital, after stay number 3, i.e. after the Easter Sunday one which lasted nearly a week). As I write this, he is still there,  as bony as a starved, extremely deprived child; one would think he had been in a famine situation. It is heart breaking.  I cannot tell you in these few lines, how much weeping I have done in the last 6weeks. But still we fight on, for what choice have we?

Mya Barnes,

May 2017

Second first time

Dear Friend (and or/ family :):) )

it’s been a minute, (an expression my sister loves to use). Ive been swamped with all sorts of tests and trials, which I haven’t had the heart to chronicle. Everything I write is straight from the heart, so sometimes I am unable to write anything because the heart is hurting too much, and it is impossible to open such raw wounds and share the things that are going on.

So..what’s new? well…Paps is now a big brother.

I wondered whether to use an exclamation mark or not, usually such announcements are joyful exclamations right? Except in my case I’m kind of straddling two (or more) states because I am at once elated by the experience of being a new mother all over again, yet the very same experience makes me angry and resentful and bitter in many ways.

For the first time I see what it means to have a healthy child. She (yes, Paps got a baby sister, cute as a button) kicks all the time, waves her hand in what I call her signature victory pose, squirms and wriggles …you name it. I was filled with wonder when I saw just how much movement she had, I had forgotten what babies were like. Paps was a bit of a weak baby, and by the time he had gained some strength (when he was about 2 weeks old), the multiple infections had begun their march into his systems so we didn’t get the squirmy-wormy fist-pumping thingy for very long.

For the first time I was able to pump breastmilk and actually get more than a thin layer at the bottom. In fact, Iv been taking pictures to mark my progress, the first time i pumped and got 30mls (ie one ounce) within 15minutes, I burst into tears! With Paps, he was so sick from infections and chicken pox etc that I was rarely successful with my milk efforts, and by the time he was about two months he had had enough of the hustling without much reward and spurned my offers of milk. I remember that the entire time i was nursing, I only ever got 40mls once, and that was after about 40minutes of pumping. And just last week, I got 90mls! gaddang!

While I am excited about all this new stuff, I am angry that everything feels so new. This is baby number 2, yet I am asking questions that a brand new mother would ask, and I am asking them of people who have, in some cases, only a 6mth old as their experience. I have struggled for the last three and a half years to not be bitter and resentful, I thought I had won the battle, but these new things keep opening wounds not quite healed; some I didn’t even know existed.

My sister said to me to try to focus on the present so that I would not lose out twice, because by comparing and looking back, I was missing out on the present, and the joy of a beautiful, healthy child, and reopening old hurts that I couldn’t change. Great advice, I know, but much harder to follow.

So I am struggling, all over again, to deal with the hurts of 3 years ago, while trying to be happy and grateful for the present joys.

Sometimes I feel guilty, that I am taking more joy from being a mother this time around than I ever did with Paps, primarily because life is so much easier with her than with Paps. Its not his fault, and not mine, yet I find myself wondering if Paps will be hurt that I am a much lighter-hearted mother with his sister than I was with him, and how to handle that. Of course, he can’t say anything so maybe I am just thinking things for him, but I do wonder.

Sometimes I wonder if I will love my daughter better than I do Paps, because so much of the experience of being his mother has been nothing short of hell, so much hard work and investment and so little to hold on to as reward. My husband assures me that this is impossible. What I have invested in Paps is far more than what many parents have to, and this has created an enduring bond between my son and me.

And as to the little one, I keep looking out for the least change, the smallest rash, the tiniest jerk that i find unusual and I run to the paediatrician at the slightest thing. Having been Paps’ doctor all this while, he understands my worries and examines her thoroughly both to be sure she’s ok, but i suspect more to calm my fears. I suspect that until I get past the 6month mark, which is when the last infection revealed the brain problems with Paps, I wont rest too easy. Maybe its an irrational feeling, but it is mine, and I’m keeping it!

I am grateful to God for the opportunity to be a mother for the second time, and I hope and pray that all the joys of motherhood, all the opportunities and experiences, and most of all, peace of mind, that good health of one’s child brings,  will be mine to enjoy this time around. I pray that she will bring us joy and hope, strengthen our faith, and be a blessing to her brother. I hope they have a close relationship and that she will love him almost as much as I do.

Ewuraa, waba a, tena ase.

30/04/2017

CARER FATIGUE

I  have Carer Fatigue.

I’m sure there is a more official sounding name for it, but that’s what I call it. There comes a time when  as a carer of a child with special needs, you’ re just overwhelmed by the amount of thinking, strategising, campaigning, researching and just plain hard work you have to do for the child to have as good a life as you can give them. And what’s more, you’re tired of feeling that overwhelmed.

Sometimes it is the fear that I have hit a plateau of ideas; I’ve done everything I can think of, everything that will not hurt my Paps. Lately I have decided that as long as the thing does not harm him, I will try it, even if it doesn’t help. But I do feel like we’ve plateaued now. I don’t see what more I can do, I don’t see much improvement from what we’re already doing. Sometimes I even feel like he’s retrogressed, he is not always able to do things that he could do a few months ago, whether it’s because he has forgotten how to do them, or he’s grown bigger and so is having to deal with controlling the muscles in a bigger frame than before or if, like me, he’s just plain tired of the pain and the prodding. I don’t know.

But I’m tired.

Even though I have written about the healing process, and how slowly I’m feeling better and stronger and more positive about my circumstances, there are days when the sorrow just creeps over me, the questions flood my mind, and the fears and worries chill me to my very bone. I wonder what lies ahead of me, how I will cope as he gets bigger, and we need new equipment(which is ridiculously expensive), new help, new ideas. What happens if I cant get those things he needs? At the moment I am barely able to carry him, so what will I do when he is older and bigger? Will he even survive that long? With all the challenges of daily life he goes through? Recently one of the CP mothers I found online lost her son. It hit me more than I can say. It affected me so deeply, I wept for the mother,I wept for the dreams she had had broken by the discovery that her child would have lifelong challenges, and for the time she had spent rebuilding her life around her new reality, for the new dreams she was beginning to dream for her son, the new hopes she had begun to weave, only to have these taken away so finally and so cruelly. I wept for the little boy who finally was free to fly, free from the pain of having CP. Selfishly, I wept also for myself. For I know what the doctors have said about Papi’s chances. I know the faith that I have put in God to make a joke of the doctors’ worst predictions and dire prognosis. Yet here was someone’s reality staring me in my face, bringing back the pain, the doubts, the frustrations of this situation.

Questions about our future make me weep. Yet how do I stop myself from thinking about the future? How many mothers think of the future of their toddlers and break into tears?

It’s a very lonely feeling; made lonelier still when you see your friends and family with their toddlers and kids who are about your kid’s age, so capable, so strong. Last weekend I watched my 2.5 year old niece as she walked about her grandma’s house, merrily chirping “little donkey, little donkey” (a Christmas carol we loved as kids). As much as I love my little princess, I had to blink my tears away, as I thought of the carols Ive sung over the last three Christmases since Paapa was born. I still can’t get even a flicker of response to any of those tunes, it’s as if he had never heard them before. Yet I start singing them, sometimes as early as August, so that hopefully by December I might get some reaction, however slight it may be. Yet still, there is nothing.

Thoughts like these make a person desperate, and weepy, and weak. It weakens my resolve to keep searching, keep moving till my son has some form of independent life. It makes me ask “what’s the point?” But worse, it makes me feel guilty. Guilty that sometimes I am tempted to give up ,guilty, because I am constantly trying to balance my emotions and my feelings, so that none may think I am resentful of them, or that I do not love my nephews and nieces as I should. Guilty, because I still feel like I am lacking, and lacking in a most fundamental way. Guilty, because the fear leads to doubt, and the doubt weakens my faith.

And I am truly tired of all these feelings warring within me. But if I don’t hold on, who will?

MAAME YAA BARNES

07/11/2016

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