Saturday, September 24, 2011

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.

Monday, September 12, 2011

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 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.

Saturday, September 10, 2011

Day 491 - goodbye

My darling Mikayla. I can't believe it. At 11:15 this morning, you took you very last breath whilst in my arms. How quickly you were gone. I am completely and utterly broken. The angels have the most beautiful girl in the world in their midst. And I have you no more. 16 months, 2 days. Too short. Service details will follow in due course. We're spending time together as a family as we grieve and mourn the loss of my beautiful baby girl.

Friday, September 9, 2011

Days 486 - 489 16 months today

Mikayla is 16 months today. Never. Never. Did we think we'd have this much time with her.

And yet there's more to celebrate today. This is really silly... I mean REALLY silly... but I feel like we've reached another milestone. Let me explain:

You see, for months now, and for reasons I cannot explain, I have had the number 486 in my head. I don't know where it comes from... it just pops in from time to time. Then, on Saturday, when I posted that post, after not having posted for a while... I looked at the numbers, and remembered.. 486. And I was worried. It's so silly... it's just a number... but after her turn on Saturday, suddenly it didn't seem so insignificant, and it just kind of lingered at the back of my mind over the proceeding days.

But now we're at day 489. That's 3 more days. It's a milestone. Not a true one. Not a significant one. But one nonetheless.

The bad news is that Mikayla's condition is not improving- well, not at any significant level. The doctor did a CRP sample, which checks her inflamation levels... and it seems that there is a decline in inflamation which suggests that the antibiotic is fighting the infection. But her lung is still consolidated. We have given her slightly stronger pain meds to keep her calm- she has been really fretful the last few days.

Tuesday was particularly bad. She was really unhappy. When I arrived her upper chest was all puffy. She was agitated, and was shouting- a horrible cats cry. To cut a long story short: the IV line that was now being run into her jugular vein in her neck had BENT. Can you imagine how sore that must've been?! They have swapped sides now, and she seems more comfortable. But the only other place to run a line, if this one comes out, will be her head... and then all her crazy hair will have to be shaved off (and it's only just growing now). But for now, it looks fine.

So since yesterday afternoon, the meds seem to be keeping her calm. And I think if she isn't spending so much time fighting and shouting, perhaps some of that energy can go to fighting the infection.

I feel so sorry for her. Her poor little body must be so sore. She has now been having physio for 11 days. On that tiny body! My heart just breaks for her. She's is so strong, and yet so fragile.

I am not sure what to feel at the moment. I am tossed between utter despair and worry, to strength and calm, to surrender. The reality is that at this stage it doesn't look good. We are doing everything we can, and yet she isn't getting better. We've moved through several antibiotics; and while they do their part, her body can't to it's part, and so she just gets worse again. How much more can her poor little body endure?

It's just not fair.

And yet, Mikayla has surprised us all before. Several times. And as long as she wants to fight, we will help her. It's really up to her.

Sunday, September 4, 2011

Day 485 Hospital Update

Mikayla has been up and down today. She is sleeping alot, but this is better than being awake, because when she is awake she can get quite distressed. Although we have had a couple time when she has been awake, and calm. Yesterday we took the boys to see her. We just told them she is sick, nothing more. She was so calm when they were there. You really could see that she was pleased that they were there, even though she didn't smile. I was worried about Luke though, who was quite tearful :( He said he doesn't like her being sick. I know he fears the worst, although her cannot quite verbalise his fears. The nurses are playing with her O2 levels between 2 and 3. And again, she is up and down in this respect. She doesn't like being held or moved too much. Except for her Daddy. Mikayla just LOVES her Daddy. She is calm around him, and even let him pick her up today. I hope it's a good sign. I am feeling... I think scared. I don't want her to be in pain, or suffer. This sucks.

Saturday, September 3, 2011

Day 484 Please pray

Miks took a turn for the worse in the early hours of this morning. Her upper right lobe has collapsed again, and her left lung is completely consolidated. She is currently breathing with only about 25% lung capacity. It isn't good. Please Pray! I am terrified of her suffering :(

Friday, September 2, 2011

Days 469 - 483 Reflection and Perspective

I've been thinking alot lately about how far we've come. Not sure why. But I think perhaps it gives some perspective to the "now", when you stop and consider "then". 
Mikayla was born and we were given weeks, nay, days of possibly being with her. But the days become weeks, and the weeks months, and the months years! But it's not just time. The early days were hard. Really hard. I guess I need to remember that as Miks starts to frequent hospitals more often, something that wasn't an issue before... The perspective is that in those dark early days there were some really hard moments. The apneas. You cannot begin to know what it feels like to hold your limp, purple baby in your arms, to breathe life into her, to shake her just to get the life to come back into her eyes. Or what it feels like to hold a baby that won't stop crying... For eight hours solid, and with no means to comfort her. To hold you emaciated child wondering if she's starving to death.
I'm sorry, I am painting a bleak picture... But here's the important part: we came out the other side. And in those dark days there was also much joy. There were the obvious ones: the smile around 6 months. The age milestones. The reaching out to touch things.  But there were others: the softness of her skin. The sparkle in her eye. Watching her gain weight, and actually get chubby! Smiling at her brothers. Dancing together to our special song. All simple innocuous moments that make up a life. Those are what memories are built on... All those innocuous moments.
As I sit here next to your hospital bed, Miks, watching your O2 levels rise and fall, with the red beep every time it drops below acceptable levels. As I hear the suctioning of the machine as the physio sucks out all the mucous build up, as i hear the bubble bubble of the oxygen machine, as I watch the soft rise and fall of your chest, and wonder how it is that for 14 months you barely went to the doctor, and yet in the last two months you have been hospitiliised THREE times, and I wonder if this is how our lives are going to be? Endless hospital visits? As I sit here, I think it's important to reflect on how far we've come. How far you've come! What we have survived, what YOU have survived. 
And also to take a moment to be humbly grateful for all that we have had so far.

I have often said how hard it was when you first entered this world, because the daughter I was expecting was robbed from me. And that feeling of loss was so enormous. Like a thief in the night, all my joy, hope and happiness was taken from me. But I've been thinking about this a lot, and, well, something cannot be stolen from you that you don't actually have. In my head I had a "normal" baby girl. But I never actually had her... So how could she have been "taken from me". It doesn't change the sense of loss, but perhaps I need to take in cognizance that what I have is what I always had, but just didn't know it. And every now and again I need to step back and recognize that the wonder of that may just exceed the loss. 

Little Caleb passed away this week. It's been really moving to witness all the people that that beautiful child has touched and the impact his short 29 months have brought. How can we not be thankful for his life? And so it is, Miks, that I am thankful for yours, and thankful that today. Right now. You are here with me. And that really is a blessing. Even in the hard times.

Mikayla has been in hospital since Monday. She has pneumonia. Although not bad, they are battling to wean her off the oxygen. She is sleeping most of the time, and obviously unhappy. I am finding a lot of the nursing staff either rough with her, or completely uninterested. It upsets me immensely having to have her there all the time... I have to be home to breastfeed Jude. I was hoping she'd be home today.... But I guess we'll have to see what tomorrow brings! Just want to see my sweet girl smile again.