Nathan, our gift from God…

It’s that time of the year again.  A time for giving, sharing, family.  But also reflection on the year that had passed.

A toast.  To a year gone passed.  A speech.   To remind us to count our many blessings.

So here’s to the many families living with a child with Cerebral Palsy.  Or any other disease or disability for that matter.   I salute you.  The nights you don’t sleep, the hours spent on feeding, the dreadful ER visit’s, the trouble with caretakers, the constant struggle with money, the many, many worries about what the future may hold will never go unnoticed.  Even if our society does not understand the love you have for your child, know very well that each and every parent in a similar situation does understand.  Even the ones who had lost the fight.  I raise my glass!  You make me realise what a privilege it was to have Nathan.  You make me appreciate my remaining healthy, happy children so much more. 

Here’s to the obnoxious guy who belittles his girlfriend.  You make me love my wonderful husband even more.

Here’s to the many abused woman and children.  For standing up and saying “No more” – I appreciate my husband’s support in all my (sometimes) crazy endeavours.

Here’s to the friends and strangers diagnosed with cancer.  You gave me the wake-up call needed to prevent a possible diagnosis myself. Even if it meant making very tough decisions.

Here’s to the pregnant friends.  You helped me realise that the children I have is more than enough to fill the void left by Nathan’s passing. A new baby cannot take his place.  I have enough.  More than enough.

Here’s to the recession and the thousands of people who lost their jobs. To everyone who had lost their homes, their lives the way they wanted it.  To everyone who had lost their families because of it.   I appreciate the well-paying job I have.

Here’s to all the people who committed suicide this year.  And their families who were left behind.  You made me realise that I must have an incredible inner strength to be approaching the second Christmas without my son.  You made me see that my support is always around.  I am grateful that I have a support system.

Here’s to new hobbies.  To meeting different people.  To making new friends.  Where there is no traumatic history.  Where I can be someone without the harrowing past.

Here’s to all the people living in shacks.  I am grateful for my house with an insulated roof and running water and carpeted floors and soft beds and warm blankets.  I count my blessings one by one.

Here’s to the men and woman working tirelessly at finishing a chapter that should never have been written at all.  Who speak to us with kindness and empathy. The behind the scene angels who touched our lives. 

As I reflect on the year gone passed, I realise that I not only have more blessings deserving a human being, but also amidst a deep, deep sorrow the promise that tomorrow will indeed be better.  Here’s to life, in general.  A sense of belonging.  Beautiful memories of a little boy’s life.  A life well lived, but ended too soon.  I am grateful for the time I had been given to get to know him. 

The ebb and flow of grief is no longer something I fear.  I accept that there are days where I will miss him enormously and days I will think back to him fondly.  Days where I want to hide in a closet.  Days where I want to look at pictures.  Days when I wail and days it’s just a trickle.  It has become part of who I am. 

Here’s to all the mom’s and dad’s whose children had died.  It is an incredibly heartbreaking group to belong to but it is also the only group through which you learn that life is precious.  All life is precious.  And sacred.   It remains a fragile gift that can be shattered or taken back at any stage. 

We still have no single word to describe us.  We aren’t called widows or orphans.  But I realised it is because there simply cannot be a word to describe that incredible loss.

Here’s to us, for surviving another year.  May the ones that follow be treated as if it could have been the last.  Make memories, say yes, do something daring, make new friends, live this life you’ve been given. 

So raise your glasses and let’s say thanks to all the many blessings we have.

To the New Year.

Cheers!

Dearest Nathan,

Today was your fourth birthday.  Today you would have gotten your first bicycle with little wheels on the side.  We would have gone for a walk and you would have cycled alongside Doef.  You probably would have thrown a tantrum because he would be able to go much faster than you!  Or maybe, you would have stuck to mom and dad’s side and the knowledge that where ever we are, you would be safe.  You would have enjoyed a Thomas the Train cake, or a bunch of cupcakes -as long as they had chocolate icing and smarties on the top.  You would have blown out your four candles and we all would have sung happy birthday Nathan!  You would have been fast asleep by now, knowing that today was your best birthday ever…as would every other one therafter be. 

At least, that is the way it should have been. 

Instead, we had just a few close friends over for coffee and cupcakes.  They still had chocolate icing on but instead of four candles, mom put four smarties on each cupcake.  Instead of a bicycle, we had no gifts except a beautiful plant for your garden.  We didn’t speak about you today because the words became like dry flour in my throat.  All sticky on the insides of your mouth.  But you were still the birthday boy on everyone’s mind.  Not a lot of people remembered that it was your birthday today.  Or maybe they did and they just didn’t know how to say anything.  Or maybe, they were too afraid to say anything.  Mom doesn’t know.  But what I do know, is that the people who mattered remembered you today and we all felt sad that the guest of honor couldn’t be here.

Mom slept for most of the afternoon and tonight is going to be a difficult one as I try to sleep…and try not to think about you too much.  But, just as mom somehow still carries on without you, I will survive tonight.

I hope the angels spoilt you rotten today and that you get to visit mom in my dreams when they come. 

We miss you more and more and more every day and at least now we know for certain that nothing was for nothing.  Just know that mom and dad are still fighting for you -  just as we promised you so many times.  

Then again, these are probably things you know already. 

Give Ouma a great big kiss and say thank you that she looks after you for us.

xxx

There is a drawer in my dresser that I avoid.   There is also a cupboard in Doef’s bedroom that I never open.  Also a box in the study that I stuff under other boxes.  I don’t avoid it with revulsion, but rather a kind of “holy” avoidance.  I have respect for those three places and opening it up, would be similar to Pandora’s box. As I imagined, it was.

You once spent more than five weeks at once in a hospital in Cape Town.  Not uncommon for a mother with a very sick child.  You live there, eat there, sleep there, listen to the same story from doctors and nurses over and over again.  You make friends with fellow inmates in the medical jail and you exchange treatment plans over coffee and discuss fears over wine in polystyrene cups.  In between you smoke together in a far too formal courtyard.  By nine-o’clock it is lights out, doors closed, sleep time and think time because sleep doesn’t come.  You don’t trust anyone to look after your child the way that you do and you sleep in his cot with your hand on his chest just to make sure he breathes.   You don’t trust the monitor that should supposedly monitor that for him.   You are suspicious of new nurses because how many seizures have they seen?  You learn to nod in agreement when a doctor feeds you nonsense, because he doesn’t know himself.  You learn a brand new vocabulary.  You learn to communicate with medical professionals on their turf, hoping to get better answers.  Wrong decision, you learn really soon, the minute you fully understand, is the same minute they stop explaining themselves.  A fellow inmate teaches you how to play dumb intelligently.  You arm yourself with a notebook and pen and you start writing down what they say instead.  You teach yourself the chemical interactions of medicines, just so you know which ones should be weaned first. And which ones could cause liver failure, and which ones turns him into a zombie. 

When Neurology ward runs dry, you make friends with Oncology.  Not your turf, but fellow inmates non- the- less.  You have Valentine’s day Nando’s with a strange man, whom you might as well have known forever.   You listen to the stories of Chemotherapy and Radiation and Full blood counts and nausea and vomiting and it sounds terrible to you.  He starts crying when you tell him the story of EEG’s and Milk studies and Pneumonia and Ventilators.  You shudder when he tells you that she won’t make it to her third birthday, and you silently say thank you God, thank you God, nobody said that to you.  When you see him again a few days later, he is carrying teddies and blankets.  His eyes are red, his face puffy.  You don’t ask him, you know, she didn’t make it to her third birthday.  You go back to your private room in Paediatrics (so you don’t disturb the other mothers) and you hug your stiff child and say thank you God, thank you that it wasn’t my child. 

You go through the notions of medicine administration to relieve symptoms.  Keep him comfortable, becomes the new treatment plan.  You don’t agree, treat the problem.  You can’t fix a brain.  You sit mumbling this outside in the darkness and smoke too many cigarettes.  You found a secluded spot on the East side of the building that no-one frequents.  It becomes your crying spot.  Your praying spot.  Your shouting spot.  Until you see a figure walking towards you. You were found out for being weak. You hastily wipe the tears and wonder silently how this person is able to walk on legs so skinny they look like they should break.  She comes towards you and her cheekbones are covered with too thin skin.  She asks if she could join you.  You nod and smoke in silence.  You want to ask what is wrong, but you know.  You developed a nose to smell death.  You ask her if she is afraid to die.  She answers that sometimes she is, and sometimes she wishes it was over already.  You sit in silence until she asks you if you are afraid to die.  Your answer surprises you.  You say that you are afraid your child will die.  She puts her cold skinny hand on your arm and squeezes it lightly.  Her answer doesn’t surprise you.  She says that she is also afraid her child would die.  A universal fear that all parents share.  With good right.

Later, when a friend suggests you take him home, you say that it will be the last hospital admission.  He will not get pneumonia again.  And he doesn’t, for a long time at least and you begin to feel a bit like God for tricking fate. You keep him healthy, you don’t ask for help, you do it yourself.  Until you get so tired.  Until you can’t do it yourself anymore and you fall hook-line-and-sinker for the seemingly caring. You are grateful for the break, but you don’t say it for in case he can sense it.   You fall back into the spiral of hospital admissions.  You know you are losing the fight but you don’t admit it.  You know that it is a matter of time, but time stands still when you pray all the time.  You feverishly look for someone who will believe you when you say that he makes steady progress.  You start forcing it down people’s throats until they start avoiding you.  You prove to the ones that matter that he really can see and he really can feel and he really understands.  Until it blows up in your face.  It isn’t enough for a good life, they say.  He isn’t worth fighting for. Let nature take it’s course.  You beg strangers to see the child behind the C.P.  They shake their heads.  Instead, they compliment you on the noble job you are doing.  How could you be so blind, you wonder.  How could you not see this coming? 

I started blogging to keep everyone informed about Nathan’s progress.  Little did I know that it would be a record of the last months of his life. 

And…

Just as I am avoiding the dresser in which his ashes are kept.

Just as I am avoiding the cupboard in which the most precious of his earthly belongings are kept.

Just as I avoided the box in the study with cards and pictures and scrapbooks and journals… 

I am started to avoid this blog.

I won’t delete it, but I don’t want to write here anymore. 

Let’s keep it for what it was intended.

In this world we live in, there are three types of truth. Your version. My version. And the real factual truth.

There is a rumour going that we did the absurd.   The thing I feared and worried about most during our journey with Nathan. The rumour is that we, as Nathan’s mother and father, requested that the doctor switch the life sustaining machines off. I have a feeling that the person spreading the rumour reads here. It is therefore the reason why I use this as my platform to tell my version of the truth.   Even that is not the real truth because there are far too many question marks still hanging over his original “injury” and his subsequent treatment. There are even hundreds of question marks over his death. The reason. The cause. The question: Could it have been avoided?

It is much more than just questioning the cycle of life and death. It is so much more than just questioning God’s reasons and plans. It is even more than forensic specialists can answer in 8 months. It is complex, very complex to get to the factual truth. We have no other option but to patiently wait for our version of truth to concur with the factual truth a little more, until your version no longer exists.

Without further ado, let me clarify the seemingly “obvious” to the person spreading the rumour…

The day before Nathan died; I spoke to the sister working with him so many times that she asked me not to phone anymore. She will phone me if there is any change. She was happy with his condition to the point where she was “surprisingly happy” with him. We were once again hopeful following the local paediatrician’s decision to allow him to die in our home town without offering further treatment. He would be given Morphine to keep him comfortable, not too much, she said, just enough to keep him calm. This was odd to us, since she gave him a power plate session for his birthday. Hardly a gift you would give to a child you are so sure would die despite maximum input…. We repeatedly asked that he be transferred to a hospital were treatment could be offered. She stood her ground when the specialist who usually ventilated him refused to accept him as a patient and entirely overruled our requests as parents to treat him to the best of human abilities. This would have included ventilation to help him beat the infection. It wasn’t until I, his mother, asked an anaesthetist in the hospital to please help my son breathe that something was done. He was tubed and ventilated by the anaesthetist I asked to help me. I know we lost too much valuable time there. Far too much…

The day of his death we were on our way to him when the phone rang. It was one of the treating paediatricians. She wanted me to know that his oxygen saturation was below 80 despite ventilation. I guess she was trying to prepare us for the worst…or she wanted to make sure we knew there was no more hope. We arrived to find his saturation to be below 70. I learned a fair amount of ventilators and realised he was no longer on full ventilation. It was confirmed by the nursing notes. They already started to wean him without taking away the strong sedative. The sedative would suppress respiration. Why suppress respiration while taking support away…? With saturation levels in the 60’s it was impossible to get away unscathed. Sadly, my questions remained unanswered. I was just the hysterical mother in denial. As usual.

His saturation continued to drop without any effort from the doctors despite their promise that they would “go full out” to help him. I repeatedly asked if there wasn’t something they could do. Ventilation would not be upped again. He was declared dead. THEN the ventilator was switched off. This was without any input whatsoever from us, his parents.

 Discussing another child’s recent episode the comment from a guest was that “maybe it is better to let go when they have been without oxygen for so long”. My answer…I would have resuscitated for hours despite the outcome. Nothing is more valuable to me than life. Especially my children’s lives.

To end the rumour now, here, forever…our choices were taken away. We did not request that his life be ended. We requested them to fight despite the odds. And was overruled. There wasn’t a thing in the world we could do about it.

 If the factual truth could be told, what would it be? Would it be that you cannot compare a MRI scan and a CT scan to prove to us that he really did have some disease that ate away at his brain?

Would it be that there really was no disease at all? Because that is factual truth now. No diseases. No genetic deviations. No chromosome defects. Nothing whatsoever.

Would it be that he really was deprived of oxygen long enough to have shattered his chances of a future forever? Because even that is factual truth now. Undisputed. Factual.

Would it be that maybe, just maybe some more of our version would coincide with the factual truth?

Time will tell.

Next time you want to know something, ask me. We are not some family to be pitied. We were not chosen for some philanthropic reason. We were there. We lived this nightmare. We live with the guilt and the questions. We are ordinary people, who survived the worst trauma imaginable for a parent, who CHOSE to lift our heads again and (mostly) look the world in the eye.

Your rumour stirrs emotions I suppress.

Your rumours hurt.

This really touched me.  I had to share…I miss him so much lately… 
I went to the hospital where Eliot was born the other day. I sat outside of the room where he was delivered, the room where he took his first breath, room number 15. I went, not to be sad, but to remember. I thought that if I could just remember what it was like on that day, then my sadness would begin to turn into something else…gratefulness, joy, hope. I wanted to remember hanging so desperately onto Christ for strength that I could barely breathe. I wanted to remember the unknowns…Boy or girl?…Life or death? I wanted to remember the joy of that cry- because that cry meant that he was alive, that cry meant time- and I hoped, with all that I had, for time with this child I carried. I wanted to remember what it was like to stay up all night holding him that first night because we had no idea how long we would have with him. I wanted to remember, and I did. I relived day number one and I smiled.

We now know. 99 days. 99 beautiful days of relentlessly loving a sweet, sweet little boy named Eliot. 99 days that were a miracle. 99 days that I wish I could remember better. He has been gone for 3 months now, and my sadness & my missing him so badly makes everything, the wonder of his life, so hazy. It makes the joy of that day & of the 98 days that followed hazy; God broke through the haze for one short hour and helped me to see…He gave me a glimpse of His glory. I wait for more glimpses that will eventually turn into long stares at the glory of God through a little boy’s life. I know glory lives there. On day 99 I saw Eliot breathe his last breath. I was there, and despite the despair, I remembered on my visit back to the hospital that I also saw him breathe his first. 

I just miss him tonight…

I dread speaking to people I haven’t seen since before Nathan died. If they don’t know he died, it is even harder. It isn’t that I don’t want to talk about him. It is more a case of not trusting my voice to carry the words. They are sometimes so heavily laden with emotion that my voice cannot carry the burden. I hate that. Partly because I don’t like being out of control. Partly because I don’t know if the voice will only squeeck a little…or if the floodgates would open. I never know beforehand.

I had to do that tonight, and mostly I managed to keep my voice going. I also managed to suck the tears back in that threatened to come out. I don’t like that either. But it’s done now. Our conversation got me thinking of things I haven’t spoken about for a long time, and it really did help to say and hear the words I wasn’t going to say. It made me think of the way complete strangers helped us when we really couldn’t help ourselves anymore. It made me realise that Nathan did touch so many people. The people I wanted to be compassionate wasn’t, but somehow in a strange way, strangers made up for that. We live in a world riddled with prejudice and judgments when you really have no right to even have an opinion in some cases. People predominantly hear what they want to and then repeat what they want others to hear. Tonight I spoke to someone who knows about prejudice and who knows what it feels like to be excluded because you don’t comform to societies idea of what is appropriate and what not. But she is a stronger person for that reason. She has the courage to speak up when things are not done in the right way. She has compassion. She is caring. I have always liked her. I also didn’t speak to her since Nathan died. I didn’t answer her calls either. But she doesn’t mind. She has enough compassion to realise that losing your child, is not the same as losing your elderly mother. She matters. Because she doesn’t mind. This week I also grasped the concept of compassion from strangers.

 I have been following Declan du Toit’s story and was deeply saddened by his death. He was 7 months, 3 weeks and 4 days old. Nathan was 3 years and 4 days old. I couldn’t help but feel on some deep level a connection with Declan. I never even met him. So now, for the first time I really understand why so many of you still follow Nathan’s story. You knew him, through my eyes. Just like I knew Declan through his mother’s eyes.

It doesn’t really matter how much time has passed since Nathan left, the hope and wish for some kind of vision or dream where you can just hold him one more time, doesn’t go away.

An elderly lady stopped me in the passage the other day at work. She looked vaguely familiar but I simply couldn’t remember where I have seen her before.

I am still praying for a miracle for your son, she said. Never give up hope darling, God can make anything happen, she said

I smiled and said that I think it is a little late now for a miracle because he is gone.

It is never too late my darling, you just wait and see, she said and walked off with her walking aid.

I don’t think she realised that I meant he had died. But I wondered briefly what exactly she meant. D

oes she know something I don’t yet? Or is she just old and confused.

It made me wonder: Does God really listen when we pray?

As humans, we fulfil several different roles.  We are all someone’s co-worker, someone’s mother, someone’s wife.  We rarely have the time to be just us.  Just the person who enjoys gardening or reading or whatever.  We have too many people to be during the course of a day.  Our experiences also group us together.  You don’t see your single friends as often once you get married.  You don’t spend as much time with your childless friends as you did before.  You form groups as you go through life.   The group I find myself in now, is daunting.  I belong to the sisterhood of those whose children had died.  It isn’t any official group or bunch of people who meet over lunch.  We are a group joined by exactly the same sadness.  The manner in which the sadness was brought to us is not important.   What is important is the fact that there is no escaping this prison.

We all deal with emotions differently.  Some see the brighter side sooner than others.  Some find meaning in helping others less fortunate.  Some drowns in a sea of despair. 

My very sad days are becoming less and less.  But that only means that I don’t take tranquilisers anymore and I don’t fall to pieces every time someone mentions his name.   It is however still very difficult to get through a day without an overwhelming sense of sadness from time to time.  Sometimes it is a very simple thing that triggers my tears.  Like the other day I saw Nathan’s old hospital room on another mother’s blog.  The memories flooded my mind.  It filled my senses to the point where I could smell the disinfectant they used in the bathroom around the corner.  To the point where I could see his hospital file lying on the push trolley at the entrance of the room and the phone hanging on the wall where I last spoke to his doctor.  The room where we forgot Nemo the last time he was there and he spent a week without it.  I only got it back when it was too late for him to play with it again. 

Although I do smile and laugh and joke as usual, this tremendous sadness has become my friend.

I have however learned over the past six months to send my new friend away when I need to. 

But I welcome his presence when the missing is too much.

Like tonight.

When you feel passionately about something, it is easy for it to be all consuming.  Passion in its bad sense is associated with rage and fury and even obsession.  We all have negative connotations to words such as those.  In order for us to make anything happen at all, it is probably important to feel passionately about it.  Even more so when we have been faced with injustices that need to be corrected, somehow. 

As the mother of a severely disabled child, I soon learned that our children live in a world that was simply not designed for them.  It doesn’t make the rest of the world a bad place for not adapting to accommodate the ones that don’t fit in.  It just frustrates the individual trapped in a situation from which there won’t be escape.  In a perfect world, a world where we can pretend we live in, people are considerate to the needs of others.  People are caring and compassionate.  In an even better world, there are harmony and acceptance for anything or anyone different than us.

But we don’t live in a perfect world.  We never will, here on earth.  Although you try to live your life as a good person to a certain degree, it is impossible to satisfy the needs of everyone.   

The rights of the disabled are such a passion for us.  Especially children.  Little children who for some inexplicable reason, was placed on this earth to be less than perfect.  It is often not the fact that these children are disabled that places such a heavy burden on us as parents, but it is society’s perception of disability as a whole.  It doesn’t seem to matter whether or not a person is physically or mentally disabled/handicapped, what does matter is that “they” are different to “us” and that scares us.

It isn’t expected of you as an able-bodied person to become involved in the fight for the disabled persons rights, but it begins with you. 

All you have to do is support the efforts of those fighting for the rights of the disabled.

You might just be pleasantly surprised.

(Hermanus is a gorgeous little town only an hour and a half from Cape Town with beautiful beaches and amazing sights to see.  We also have whales J  Even more important, is that we are one of the most accessible towns in the country for disabled persons.  The third annual Wheelchair and runners race will also be hosted here on May 9^th 2009.  It is the ideal opportunity for able body persons as well as those with disabilities to get together and participate in the same event.  A.R.K is on board and we will participate as able bodied persons.  We invite you to do the sameWe have a group on facebook (The A.R.K) – look us up and join.  We can’t wait to have you on board!)

Barry Baker.

Read the rest here

Every now and then, something happens that leaves me speechless.  Not often.  But still. 

Like tonight.

She walked up to me out of absolutely nowhere.  She doesn’t know me.  I don’t know her.  She grabs my hand and puts a rolled up piece of toilet paper in my hand.  She whispers something and she left just as quickly as she came.

It took me some time to figure out what just happened.  I opened up the rolled up piece of toilet paper.  Inside was  4 crisp R 100 notes.   No name.  No note.  Nothing.

Eventually, I realised I must try and find her.  I did, around the corner, talking to another lady.

Before I could say anything, she put her hand up and said “ It’s a pleasure, don’t say anything”

I opened my mouth to say thank you, or just something.  She was clearly embarrassed by my efforts in trying to say thank you.  Her friend had a question mark all over her face.  I nodded, mouthed Thank you, and smiled at her.

I wanted to tell her that Nathan had died and that I will use it to help other children like him.  Instead I walked off, giving her the space she wanted between her random act of kindness and her comfort zone.

I never got her name.  But I will always remember this woman’s kindness out of absolutely nowhere. 

May her kindness be returned to her ten -fold.