After it all

It's unreal to think that nearly 2 weeks have gone since you left us. Sometimes I wonder if the last 2 years was all a dream. But then I see your sweet little face smiling at me from a frame on my wall. And I remember.

Life is not the same anymore. Everything is so simple now. We have moved into a new chapter. Would I change any of it? Well, if you asked me if I could have a choice between going through the last 2 years all over again, in the same way, or having never known you at all: I would do it all again. One hundred times over, to know you even for a day. As hard as it was, and there were some really hard days- with the advantage of hindsight I now see just HOW hard some days were- you, Mikayla... you were so worth it!

The week after you passed away was such a blur. We were so busy making various arrangements, it seemed to just fly by. But on the Thursday, your ashes came. That shattered me. Suddenly it was so real.

Then we had your service on the Friday. What an amazing tribute to the most amazing little girl. I even had something to say (surprise, surprise!). I thought I'd share here what we said at your Celebration of Life service, as well as the video I made for you. I hope we honored you. You were worth honoring.

I miss you. Last night I walked in the house (we'd been out to dinner to celebrate our 10 year anniversary, thanks to our wonderful friends, Dyl & Tes), and the carry cot you were always in, had some toys in it, and out of the corner of my eye, I thought it was you. But then I remembered.  I know where you are. I know that in Heaven you will have a new body. You are free. My friend Barbara had a dream about you: you were running around Heaven in a Minnie Mouse outfit, delighted at the fact that your arms and legs were doing what you wanted. And Jesus was with you- laughing at your delight. And I know that's just what is happening (ok, maybe not the Minnie Mouse outfit... Ha ha). I find comfort in knowing you are safe, and well, and that I will see your beautiful face again, and perhaps get to feel your arms wrapped around my neck, and you saying you love me.

We notice your absence. It's like an appendage no longer there. But we're doing okay. The boys miss you terribly. But we will always feel your absence... In time, it just won't ache as much, I guess.

My biggest fear is that I did not give you everything I could. My hope is that I DID honour you. That you knew it. So much of who I am, and who I want to be, is because of you. I don't want your story to end. I hope that you will continue to change people's lives... And if I am that vessel for that to happen, then my prayer is that God will open those doors for me, and give me the grace and the capacity to make that a reality.

I believe that as you left my arms, and Jesus held you on the other side, that He gazed down at you, and with a radiant smile on His face, said "well done, my good and faithful servant". You were not given a perfect body, or a perfect mind. You were not given a "full" earthly lifetime. But you gave us all so very much. So much more than we deserved. Thank you, my baby girl.

From the service on the 16th of September:

My eulogy to you:

"On the 08th of May 2010, a baby was born with Trisomy 18 otherwise known as Edwards Syndrome.

In an instant our world turned inside out.

I could tell you about heart defects, clenched hands, rocker bottom feet and webbed toes. I could tell you about delayed growth, mental retardation, poor eyesight or hearing. I could tell you the statistics of life expectancy and how 30% die in the first month, and 90% within the first year. I could tell you that this disorder is  "incompatible with life."

But I won't.

Instead, I'll tell you about a little girl with the biggest blue eyes you've ever seen. A smile that would light up an entire room, and the sweetest laugh. A little girl who loved her Daddy. Who's sweet little toes would curl when you touched her feet, and who would giggle at the feel of her Daddy's stubble. A little girl who's face would light up when her Daddy came into the room, and who just loved the attention of her brothers. A little girl who found her way into your heart, and made herself at home there. A little girl, who, by worldly standards, was nothing great, and yet she touched hundreds of people from all over the world, without having uttered a single word. That little girl was my daughter. Mikayla.

Miks, Thank you. Thank you for letting me be your mum. Thank you for showing me the value of life, and what really matters. You taught me so much about the human spirit through the generosity  and love of both friends and strangers alike. Thank you for showing me how amazing your Daddy is, for letting me see sides to him, and your brothers that I might not have seen. I am so proud of them. Thank you for bringing so much joy into our lives. You had a fighting spirit like no one I've ever known. You did not let your disorder define you, but rather carried the days of your life, numbered before the beginning of time, in Gods great book, with a gracefulness that far surpassed your years.

You changed me. Forever changed me. You somehow made me into a better person. I am quite simply better for having known you.

You. Are. My. Hero.

In an instant you changed our world the day you were born. And 491 days later, you took your last breath in my arms, and have again flipped my world inside out. I will miss you. Forever miss you.

I hope when I grow up, I'll be like you.

Fly high, my little warrior princess.

My song for you. The first and last song I ever sang to you:

"In my daughters eyes, I am a hero.
I am strong and wise, and I know no fear.
But the truth is plain to see, she was sent to rescue me,
I see who I wanna be, in my daughters eyes.

And when she wraps her hand around my finger,
Oh it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all about
It's hanging on when your heart has had enough
Giving more when you feel like giving up,
I've seen the light... It's in my daughters eyes" " (In my Daughters Eyes - Martina McBride)

Daddy's eulogy to you:

I just want to share a few stories and lessons that I have learnt from my amazing little daughter.
Bath time is a family affair in our household. You never get to bath alone. There are always three, four and sometimes five of us in the bath at the same time at any one time. Strange I know. Somehow if you hear bath water running you just think - hey why not have a meeting in the bath and whoever is around just jumps right in. Now on a couple of occasions little Miks had the last laugh at these group bath sessions. You see she would wait until we were all properly lathered up and then she would quietly drop a number 2 in the bath. With much shouting and screaming we would all scrum to get out of the water first and dash to the nearest shower.

In the short 16 months little Mikayla taught me more about life than I could ever imagine teaching her in my entire lifetime.

She taught me what it means to to be me.

Everywhere we went and everyone that we met was influenced by Mikayla. We would meet new people at a  braai or family gathering and the next day they would phone or send a message about Mikayla. People reading Taryns blog etc. Everybody seemed to know Mikayla, but more importantly, they were influenced by her in a deep and positive way somehow. I have seen many strong burly men reduced to tears as God has softened their hearts through Mikayla’s story.

So how could a little 4 kg girl who couldn’t talk, couldn’t sit and in worldly standards was very different, influence hundreds, maybe thousands of people all over the world? You see little Mikayla would go to sleep and she would wake up and just BE Mikayla. All day she would just BE Mikayla. And then she would go to sleep and wake up and just BE Mikayla. All day she would just BE Mikayla.

We couldn’t compare her to anybody else. She didn’t have to strive to be like anybody else.  So by just being who God had created her to be, she was able to touch the hearts of thousands of people around the world. So I have learnt to just be me - and allow God to influence people through me. I don’t have to be anybody else.

I have never been more convinced of the goodness of God and how much God loves us than I am right now. Although death is very sad and we miss our little princess terribly, death has no power over us as a family.

John 3:16 say “ For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.”

Because we have had to walk so close to death for a long period of time and I have had to explain death and heaven to my boys many times over the past 10 months, I can tell you that heaven is a wonderful place and I know that we will be reunited with our completely healed little daughter one day.

Although the past 16 months have been really tough at times, I wouldn’t change it for the world. It has been such a rich and powerful time for us as a family and as a community at large. My intimacy with God, Tat and my boys has grown so much and I have learnt things about them and myself that I would otherwise never have known.

Another lesson that little Miks taught me - and this is huge - is that I am not here for myself.

I am not here living on this earth for myself and to satisfy myself. The purpose of little Mikayla’s life and all of her struggles were not for herself, they were for all of us. We are the ones that were effected by and benefitted from her life. She added value to all of us.

To put it into context I want to share the story where Jesus feeds the 5000: John 6 vs 5 When Jesus looked up and saw a great crowd coming toward him, he said to Philip, “Where shall we buy bread for these people to eat?”
 7 Philip answered him, “It would take more than half a year’s wages to buy enough bread for each one to have a bite!”
 8 Another of his disciples, Andrew, Simon Peter’s brother, spoke up, 9 “Here is a boy with five small barley loaves and two small fish,

You see the little boy didn’t need lunch. He didn’t need to be fed. He had his lunch. There were 5000 other hungry people that benefitted from his lunch.

The fight, the courage, the joy that Mikayla  bought to each of us wasn’t for HER benefit it was for all of US. None of us is here to live for ourselves, we are all here to benefit and serve others.
So I have to ask myself “what am I doing with the five small barley loaves and two small fish that God has given me?” Whose life can I add value too? Who can I serve while I am here on earth?
It is a phenomenal question and one that little Mikayla could answer - All of us.

The video we played:



The Balloon release:

At the end of the service we released 491 balloons: 490 white and one pink balloon. One for every day of your life. It was beautiful to watch. How quickly they were gone. Some pics that friends took:

Can you see the pink one here... I watched it go, until I couldn't see it anymore....

As you fly high with the angels, Miks, and as we learn to carry on life without you here. I know that there will not be a day that goes by that I don't think of you. There are times that it will be hard: like this morning, when I moved the bed, and it made a sound that for an instant sounded like your giggle... and I sat on the bed and wept..... and there are times it will be easy, as we remember fondly of the wonderful part you played for your brief time in our family, and our community.

As I said at your service. You Changed Me. Forever Changed Me... and I will Miss You. Forever Miss You.

Lord Jesus, please take care of my baby girl, until I see her again.

Days 362 - 367 Birthday Celebrations!

Yesterday was your birthday. Happy birthday my little angel princess!!


I wanted to so much to make it a special day for you. Not just because it is such an accomplishment... such a grand day for you... but just because I wanted, personally, to honour you. You are who you are, and have done as well as you've done, DESPITE me. And no matter how many people tell me how amazing your Dad and I are because of how well you've done, I know that it's only because of you, and our Father in Heaven that you have made it this far- and with flying colours! You continue to amaze me... and everyday another little snippet of who you are comes out, making you more and more you.

You have taught me SO much. You've taught me about your father, and your brothers, things perhaps I might not have known. I have seen strength and courage shine through the boys in my life, that I may not have noticed so prominently had it not been for you. I am surrounded by these strong boys (and your Dad), who I feel very privileged to have in my life. Tender, loving boys, who I know will do their wives great justice. Who will honour, respect, and love the woman in their lives, because of how they have learnt to love because of you. A non-critical, sincere love based on nothing but the raw emotion of love itself.

You have taught me so much about who I am, and who I want to be. I have learnt to perhaps appreciate the small things more. I have a long way to go- because I still get sulky and bitter sometimes, but I don't take the small achievements for granted anymore. I am possibly a little less critical. Possibly a little more understanding. I hurt a little more for others, because I perhaps understand pain a little more than I did before. I am a little better at processing my disappointment than I was before, and perhaps a bit more learned when it comes to understanding that, as much as I wish it was, my life is quite simply not about me. You have taught me that I am stronger than I thought I was. Perhaps even I am a better mother than I thought I was. I understand now what a privilege being a mother is, and how, although our children are a product of us, they are also their own people; and that our responsibility as parents to find that special spark within them, that innate potential that they were born with - despite us, not because of us- and to nurture and grow it, so that they can be the best people THEY'RE meant to be. Not the people we expect them to be. And that perhaps somewhere along the way, these little people can teach us so much more than we can teach them.

Your life is also a testament to the fact that all our days are numbered in GOD'S great book. Not ours. And the value of living for today and what it has to offer, is so much greater than all the BIG things in the future that we have planned, and the failures of the past that we allow to define us. That making the most of what we are, who we are, and where we are today far outweighs the value of Our-Great-Future-Potential, or That-Thing-That-We-Thought-We-Would-Be-But-Life-Threw-Us-A-Curveball-And -Now-We're-Not.

I did not ask for a disabled child. It was not in My Big Plan. But you know what? I got it. I got you. And I am better for it. Would I change it? Oh, you betcha! In a heartbeat! Of course I want you to be "normal", partly because it would suite my plan... but also because of all the things I know we're going to "miss out on". But you are teaching me slowly that if I live my life always thinking about what I missed, and lost, and may never gain, I miss out on little magical moments from today, which will enrich my life so much more than the things I "wish I had".

Your life, while miraculous, is not a miracle. You are not walking, and going off to main stream school. Your T18 hasn't gone away. Your prognosis is still what is is, although you fall into a small percentage of children who have lived beyond 1 year. So when people talk about your life being a miracle, I can be cynical, and kind of, well, no, your still being alive is not a miracle, it is a strong fighting spirit that you have, and the fact that on the T18 spectrum, you are a "healthy child".

BUT.... AND THIS IS WHAT IS IMPORTANT.... The miracle of your life doesn't lie in your healing or lack thereof. It doesn't lie in the number of days, months or years that you are alive. The miracle of your life, is that you have managed to show people the VALUE of what life is, without you ever having to whisper a word. That you have touched lives, without ever physically reaching out. That you have made me realise that miracles are not always BIG things. Sometimes miracles are unseen and unheard. And I think those miracles are just as valuable as the "big ticket" items.

My hope is that your life teaches people the value of really living.

Happy birthday, my special girl. I love you dearly.

Days 206-240 Getting to know Miks better

So the first few weeks of December were just chaotic, trying to wrap things up before taking leave. I basically hadn't taken leave pretty much the entire year, and since I had to take all my leave by the end of the year, decided to take a full months leave. Somewhat disappointing really, as it's not like we've jet-set off to some exotic location... but rather we spent Christmas with my folks, and have otherwise just been at home. But I have loved the MUCH needed break. To clear my head. And settle my heart a bit.

As mentioned above, we spent Christmas down in East London (that's Oos Londen, in die Oos Kaap, and NOT the East of London, Britain, incase anyone was wondering.. ha ha). Well, the morning we left, Mikayla was an absolute disaster. She cried the whole morning, the whole way to the airport; and the ENTIRE flight to ELS. I felt like climbing on the plane and flying straight back home... I just felt it was going to be the worst holiday ever. Miks is much happier in her own environment. She hates to travel, and I would go so far as to say that i think she perhaps doesn't like the MOTION of travelling in the car. Even a large dose of Calpol didn't help ease her, or make her sleep. So the first night she was very unhappy as well. We then travelled to see my grandparents, (Gran and Step-Grandfather) who were celebrating their 50th wedding anniversary... but something during that tiime started to change... and well, to cut a long story short, it turns out Mikayla was an absolute ANGEL during the 11 days we were away. Infact, the only really horrible days were day 1 and day 11 (er... travelling days!). She was smiley, happy... even laughing occassionally. She slept well at night, fed well, and was just an absolute pleasure.

Mum and Dad got a lady to help out so that if we wanted to go to the beach or whatever, we could leave Mikayla at home with this lady (since Miks REALLY battles outside.. she just cannot tolerate the good old South African glorious sunshine glare).. and it was on these occasions that I realised something... now hold your horses... this is big.... Mikayla really likes being around my husband and I. I mean... she REALLY enjoys our company, and attention. She would get very unhappy on the rare times we left her alone. It's almost like she has separation anxiety when we're not constantly around her.

I have to say: she was just adorable when we were away. Every now and then I would happen to be standing at her bed when she woke up, and she'd open her eyes, and the first thing she'd obviously see, was me, and she'd give me the BIGGEST grin EVER. It's a really wonderful feeling to know that she knows us. And that she really does love us. I think for a while now I have reserved something of myself. It's difficult to put your heart and soul into something or someone that you know you are going to lose sooner rather than later...and I think during this holiday I have learnt to FEEL my love for Mikayla a little more. Both a good and bad thing, in some ways.

This is a video of my husband throwing Mikayla back... she just loves it (well, she smiles like mad every time... little adrenalin junkie!)




Then below is a video of Mikayla when we had got back home, sitting outside (which is something she VERY RARELY does, as she HATES it)... but it had been a balmy summer afternoon, and we were having a braai in the garden just before sunset, so the glare wasn't too bad... she was so chilled.... sucking away on her fingers... how she gets her middle two fingers into her mouth, I just dunno... but those are her fingers of preference. Otherwise it's the WHOLE of her left hand in her mouth.



The hand thing has really made a difference to our lives... she definately self soothes a bit now. And when she gets really tired, she actually sucks her right hand, and covers her eyes with her left hand. Like this:


Then lastly, I had to post these two videos.... Mikayla very rarely laughs... and she has the cutest little laugh when she does... like a hiccup almost... but you'll have to take my word for it: it IS a laugh. She seems to find the funniest things funny. The first video, she was laughing at her Daddy when he was kissing her... it was a real spontaneous moment, that I managed to capture the tail end of... The second was of her laughing at her Daddy's beard... he rubs her hand down his chin over his stubble. Her one hand, in particular, is very sensitive... and this often does make her laugh.





The other night (new years eve), I was holding her chatting to her. I was holding her upright, facing me (she loves to try holding her head up, and manages to do it for a little longer now), and for some reason she just thought I was funny, and laughed at me 3 or 4 times. Good to know someone finds me funny... maybe I should try telling her jokes... no one else laughs at my jokes (I am REALLY BAD at telling jokes).... but maybe Miks will? There's hope for me yet....

It's those special sweet moments that make me love her so much!

We are trying again with the cereal... I gave her cereal with apple and cranberries tonight (apparently, according to the box, it's also good for tummy etc)... I admit, I am nervous... but we're giving it a go.... all prayers appreciated :)

And my head? Ooh... lots going on in there.... too much to share on this entry. But I tell you one thing: I am GLAD 2010 is OVER. It has been a HORRIBLE year for our family. First, the daughter I had prayed so hard for, and had anticipated, and been so excited to welcome into the world, arrived not as I had expected... and with all the blessings that she is, it was still an enormous loss. Then one of my aunts (one of my mum's 3 sisters) passed away after her 3 or more year battle with cancer; then my mother in law passed away, and then just before Christmas, ANOTHER of my mum's sister's passed away very suddenly after having a HUGE heart attack.... she wasn't even 60 yet! Gosh, I just wonder at what point happy things will start happening in our lives? I mean, don't get me wrong, I know that we are blessed in MANY ways... but I just, ah, I dunno... I long to feel inexplicable joy... I am not sure I know what it feels like anymore to feel absolutely blessed, or absolutely happy? Then again, do even the REALLY blessed (nothing-ever-goes-wrong-in-their-lives-kind-of-people) even know how very blessed they are?

Maybe the blessings aren't the big things, but rather the small things that often go unnoticed?

My 2011 new years resolution? I don't have one... I think it's all a load of rubbish... but I am certainly hopeful of good things to come... maybe, with a little bit of luck, even to me!? *Sigh*