Packing and crying

Today, I packed your clothes away. I haven't given them away, or sold them... just put them in a box. And it was hard.

There were clothes there that you were given before you were even born that you'd never ever worn. And clothes that you'd worn so much that looking at them was like looking at you.

16 months and 2 days of living.. the proof of your life, packed into two boxes, not even a 1m2.

I wonder sometimes why this happened. I rationalise all the good in it...and some amazing good has come of your short life, I know this. But there is a part of me that will always question our loss.
I guess, when it comes down to it, I just can't believe sometimes that the one thing I had hoped, dreamed of and prayed for, was that thing that I  lost. Not that any other loss would be better... but yet somehow this one feels worse.

Can you ask Jesus why, my baby? Would you do that for your mother? Would you ask Him why? Because no-one can heal this hole in my heart other than Him.

Let it be said that we're ok. We're fine, actually. But sometimes, when I sit down and think long and hard about you. When I try remember your smell, or the sound of your voice... when my whole being aches to hold you, love you and kiss you... in those moments, I wonder how it is that we're just carrying on?

I know, by the grace of God, He has brought us through, and will continue to hold us, and take us through. But this is the strange thing about death: life carries on. It should. And it does. But sometimes... sometimes I just want everything to stop. Just for a moment. For the whole world to stop spinning. To pause. And remember.

Because, I am so scared to forget. I know I will never forget you. But I am scared I will forget the small details of you... the things that made you who you were. The shape of your head in my hand. The feel of your hair against my face. The texture of your skin. The coolness of your feet. 16 months 2 days. Miks, it was gone so quickly... how am I going to hold onto those little things that you did for 491 days, for the rest of my life?

Your clothes are not you. The pictures on the wall do not replace you. All just resemblances, or symbols of who you were for your short time on earth. 491 days for a T18 baby... well, miraculous, really... and LONG. And yet... so very, very short.

Mikayla's Celebration Service

We will be holding a service to Celebrate and honour the life of our sweet baby girl.

Friday, 16 September
10h00 for 10h30
Linc Community Church
@ The Litchi Orchard
Seaforth Avenue
Foxhill (Salt Rock)

If Mikayla has impacted your life or taught you any valuable lessons, please could we ask that you share those details here under 'comments', alternatively email me taryn@tarynvanrensburg.co.za with the subjest "Mikayla". We would like to create a book with photos of her, as well as details of lives she has touched, as a remembrance of her, and a reminder of how very meaningful her short time with us was. Please remember to include your name, and whereabouts in the world you live.

We will also be doing a balloon release at around 11h30/12h00 on Friday (South African time). For those friends abroad or far away, please feel free to release a balloon in remembrance of our sweet little girl who has left us too soon.

Days 375 - 385 Getting into the swing of things

Gosh! Time really flies when there's another baby in the house! How has it been 10 days already!?

Jude is settling in well, Miks.... you're still somewhat fascinated when we place him near you, otherwise pretty uninterested, I suppose. His noise doesn't seem to bother you, nor does your noise seem to bother him. So it's working well having you share a room- perhaps you both know that you have company, and quite enjoy it?

You haven't been well. Last Tuesday you started sweating again. You weren't eating well. Still the norm though: in that no temperatures or anything! So, as I said in my last post, we had you on antibiotics. In the past you have always responded quite well to antibiotics, in that all your "symptoms" have normally subsided within 24 hours or so. Not this time. You're still on and off with the sweating- one day you're quite content, and we think you're better, and the next you're sweating, not eating, and all round unhappy. The worst part is that the last few nights you have started waking during the night- and getting up for two babies is NOT fun (I have developed a serious new found admiration for parents of twins. I always used to say that having twins must rock... particularly for someone like me, cos I just hate being pregnant... well, I will say that I unequivocally remove all previous comments stating that having twins is the way to go... it's SERIOUSLY hard work! Rock on one baby at a time!!).

So we're a pretty tired household. Your poor Dad... I just sometimes cannot get out of bed, and so he'll sort you out with a feed... but then he's tired, and he has a business to run! Your brother has been completely angelic. Newborns! Easy peasy (and going to change... don't worry, I am under no illusions!).

Last night we ended up giving you Panado to get you to sleep- because you were just so unhappy. But then a few hours later you were awake again, and we had exhausted all options- so I really couldn't think how to get you down again... so I gave you teething gel... and it worked! SO maybe you're teething? (It must be said: I can neither see nor feel any teeth... but at this stage we're clutching at straws! And it might not even have been the gel that "worked"... goodness... who knows?!)


The one thing that keeps striking me, now watching Jude, and how a newborn, and having a new baby in the house is: and it's really dawning on me how difficult things were with you. Particularly in the beginning. And we didn't have any help. It actually makes me sad in a way: we ploughed through those early days- just your Dad and I. I spent all my time working... and maybe that distraction was good in a way- but I am sad at the realization that it was, in some ways, quite a lonely journey right in the beginning. And I dedicated my time to other people and things. In part to try and lessen the pain... but with the advantage of hindsight- perhaps it would have been nice to have had someone ease some of that burden for us (gosh, that sounds so selfish, doesn't it?).

I guess it's a silly thing really to wish for- I mean, the reality is that by starting my blog, which was only ever a platform for me to offload some of my pain- a diary or personal journal, really- that in time I found a wonderful network of people who understood my pain, and this unusual, and often frustrating journey we were on.. people who reached out to me- sometimes a stranger- and made me feel loved, and not alone. For a season, my blog and all the wonderful friends it gave me, became my lifeline. To all of you: there are not enough thank you's.

It all sounds so selfish, but I guess the thing that has stood out, is the discrepancy of bringing you home, and bringing Jude home. How we responded to each. How others responded to each. And this is going to sounds really trite, but it's one of the reasons that I am grateful that you have done better than the odds predict- because I can now enjoy you- where I think in your early days, I just wanted to run away from it all some days. So, although hard at the moment, because I spend so much time with Jude feeding etc, I do get to spend time with you, my sweet little girl.

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.