The Garden

I am a dog. I'm not sure what kind. I am definitely not a pedigree, but I am certainly the fiercely loyal kind, as most dogs are. I have been brought to a garden. It is beautiful. 

There are big lucious beds of flowers, and green lawns. I am happy. 

But then I look again, and I realize there are large dark walls around the garden. Suddenly the garden seems small, and the walls unscaleable. The walls cast big shadows, making the garden feel cold and uninviting. I wonder how anything will survive without enough sunlight.

I am afraid. I put my tails between my legs,and curl into a ball. I whine: a low, soft, lonely sound. It echoes, making a soft wailing reverberation around the garden. 

And I wonder where my master is? Why he left me here? Why isn't he fetching me and taking me to a large open park somewhere that I can run and be free? Where he can throw a ball for me, and pat me, and love me? Have I been a bad dog? I can't understand it. I am confused. 

I hear a sound. I think it may be my Master. I go to the door of the garden. I scratch the door. At first, it's just a gentle scratch. I fear I may be wrong at first. I scratch a bit, just near the bottom of the door, where the sound is no louder than a mouse. Then I wait. Yes, there's definitely someone there. 

I stand a little straighter. I sniff a little. I am cautious. Then I scratch some more. This time louder. I make small whinnying sounds. And the noise from the other side is louder. I think he hears me now. 

So I bark. I bark loudly. Oh, the joy! I know he hears me! I hear the boldness of his footstep, I feel the heat of his hand on the door handle. And, as I watch the doorknob turn, I know finally that I am free. He came. Yes, he came for me.

Trust

Mikayla being "thrown" by her Daddy. She always loved this. And let me tell you, Mikayla was always quite clear on what she liked and didn't like!

You know, the last 2 years have really shaken my world. Everything we have been through has really challenged everything I believe in. That's not to say my belief system has changed. No. If anything perhaps it's stronger in some ways.

The word that kept hitting me this last weeks is "trust". And I mean, everywhere. It popped into my head (invariably this is how alot of my posts come about: a little pop! in the head! Not sure if that's a good thing, or a bad thing?). But it keeps appearing at me: a movie title, a verse, a song... So I've been thinking about how trust has been an issue for me over the last two years.

trust  (trst)
n.
1. Firm reliance on the integrity, ability, or character of a person or thing.
2. Custody; care.
3. Reliance on something in the future; hope.

v. trust·ed, trust·ing, trusts
v.intr.
1. To have or place reliance; depend: Trust in the Lord.
2. To be confident; hope.

Synonym: faith
These nouns denote a feeling of certainty that a person or thing will not fail. Trust implies depth and assurance of feeling that is often based on inconclusive evidence.
Faith connotes unquestioning, often emotionally charged belief

You see, when all control is out of your hands. When you have no ability to change the course of something. Who do you rely on? Who do you trust? That was hard for me. It still is. When the world around you seems to have their prayers answered, when it seems like God is helping pull other people out of their "ditches", it's really hard to trust that at some point He'll do the same for me. Now, I'm not talking blessings here. That's a whole other thing. Let me be perfectly clear here: We have been blessed in abundance. Even through all we've been through, we have been immensely blessed. And I am so very very grateful for those blessings. But we're also talking the life of my daughter here. It was her LIFE I lost. Not my car. Not my self esteem. Not my pride. The LIFE of my daughter. How do you quantify that? Aside from all the good that has come of it, how do you justify the loss of a life? Not easy.

And through trying to trust God in the last two years, and frankly, having been "let down", how do I continue to trust? Why don't I give up? We've all heard this before: "trust is earned". However, based on the description above ("Trust implies depth and assurance of feeling that is often based on inconclusive evidence"), this is not entirely true.

People were often horrified when they saw Russ playing with Miks. He'd hold her upside down, and throw her in the air. But Mikayla? She loved it. She'd pull her squidgy face, and grin from ear to ear. Russ didn't earn her trust. He simple had it. Did you know that babies naturally don't like a falling sensation, which is why when you lower a baby in a bath, they will cry... Because they don't feel secure. But our babies trust us as parents. Ok, I will admit, in part it is "earned", but I think, for the most part, they trust us based in "inconclusive evidence". In my life, in the last two years, based on prayers I have uttered, I don't have conclusive evidence to trust God. Look, before you shoot me down, I realize that there is very much conclusive evidence of God's goodness and the assurance that we can trust Him... You just have to look at the cross to see it. But, for the purpose of my point, go with me on it.

The thing is, that I do still trust God. For starters, what other hope do I have? (that's the pessimist in me)

But its more than that: The last few weeks, I have really felt like God wants me to let go. Let go of the sorrow. Let go of the frustration. Let go of the disappointment. Perhaps even let go of my dreams. He wants me to let go. To breath out all the sorrow of the last two years. And I believe that when I do that, something will happen. I don't know what. I really don't. Maybe it'll simply be a release of any hidden burden I may be carrying, and it will set me free. Maybe it'll be more than that. Maybe, as a dear friend pointed out, it will be me finally forgiving God. And, while He certainly doesn't need my forgiveness, perhaps in forgiving Him, I can break down any wall between Him and I (that I have built), and repair our relationship (only needed on my part), and build a closeness, that perhaps I have lost. And then hopefully I will feel in my heart, the trust that is in my head.

I feel like He is saying "trust me, my child". Maybe when I really embrace that trust, when I feel it warm me to my core, He will throw me up into the air, and catch me again, while I giggle in His embrace.

Psalm 13

How long, LORD? Will you forget me forever? 
How long will you hide your face from me? 
How long must I wrestle with my thoughts 
and day after day have sorrow in my heart? 
How long will my enemy triumph over me?
 
Look on me and answer, LORD my God.
Give light to my eyes, or I will sleep in death, 
and my enemy will say, “I have overcome him,” 
and my foes will rejoice when I fall.
 
But I trust in your unfailing love; 
my heart rejoices in your salvation. 
I will sing the LORD’s praise, 
for he has been good to me.

I am placing my reliance in and depending on, The Lord, my Heavenly Father.

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.

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 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.

Days 460 - 468 Here we go again...

So, we thought we were keeping your sickness at bay. Well, actually Miks we did really well. We even managed to re-inflate that collapsed lobe. I found our that the last time you were really sick you actually had LOBAL pneumonia. Apparently worse because it is concentrated in one area.. Hence the collapsed lobe.

Anyway, so we thought we were doing well, and then Sunday came. And your temps started going up. By Monday morning, your temps were between 38 & 39C and you kept vomitting up your feeds, and you sounded awful. So I whisked you off to see the pediatrician. He told me you had bronchial pneumonia, and sent me home with an extremely strong antibiotic, but everything we put in you (through your peg), you vomitted up. How is medicine supposed to work if you can't keep it in your little body?! By Tuesday morning your temp was around 40C! I phoned the pediatrician, and she recommended hospital.

You know, one of the things I hate most about your condition is how the medical community can treat you without compassion and any sense of urgency. I arrived at the hospital, and they did nothing for 45 minutes, even though you had a ridiculous temp, and you were throwing everything up. I wonder if they would treat a "normal" child with such nonchalance?

To cut to the chase, you spent two nights in hospital, and once you were holding things down, they said I could take you home. You're just down the passage from me in your bed as I type this. 3 out of 4 feeds you have vomitted up. Your vomit is a strange yellow colour, even though we've put nothing yellow in you. You have had 3 really wet stools today- one so bad i just threw away the clothes you were wearing along with the nappy... This for a baby that is always constipated! Your eyes.... Your eyes... Well... They're different. You have an almost glazed look about you. You're really sleepy. I keep getting this feeling like you're giving up. Like you don't want to fight anymore. I dunno. It's something about your eyes. And no smiling, and you're barely making a sound (SO not like you!).

Daddy goes away overseas for 10 days. The timing couldn't be worse for you to be sick.

You need to fight, baby. You need to fight.

Days 454 - 459 - Hide and Seek Video

Finally got to upload this video of Mikayla playing hide and seek with her Dad. She loves doing this.... and gets the cheekiest of smiles when playing :)



She's still pretty chesty. Thankfully it still hasn't progressed to her lungs... and we're doing all we can to ensure that. She's quite chipper though- and also has no temperatures. So given the circumstances, is actually doing very well.

I am however praying for little Lior, and his brave mum. He has bad pneumonia again. I just wish I could give Kim a big hug more than anything else. Our little babies are so small and fragile, and to see them fighting so hard is so heart breaking.

So, on this women's day, I want to honour all those amazing women out there that I know of (and those I don't), who give so much of themselves for their precious little special babies. Who love, and cherish every moment. Who would give anything to swap places. You are simply remarkable, and I couldn't have got this far without you.

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 349 - 350 How Do I love Thee? Let Me Count the Ways

How Do I Love thee? Let me count the ways

How do I love thee?  Let me count the ways.
I love thee to the depth and breadth and height
My soul can reach, when feeling out of sight
For the ends of Being and ideal Grace.
I love thee to the level of everyday’s
Most quiet need, by sun and candlelight.
I love thee freely, as men strive for Right;
I love thee purely, as they turn from Praise.
I love thee with the passion put to use
In my old griefs, and with my childhood’s faith.
I love thee with a love I seemed to lose
With my lost saints, I love thee with the breath, Smiles, tears, of all my life!
and, if God choose, I shall but love thee better after death.

-Elizabeth Barrett Browning

I read an article written on the T18 FB page. A little girl with T18 who died when she was 14 months old. I can't tell you how it hurts. You're nearly there! It just hits home when I read things like that. I think sometimes I live in dream world... it seems like you'll just be around forever. Like all of us. And then I read the reality of your condition. And it hurts me.

I took you for your one year check up today. Went to another pediatrician, as mine was away. He said you were the oldest T18 baby he had ever seen, and he was surprised at how "healthy" you were. And he is not wet behind the ears either... so that was quite a thing to hear!

Although mostly I think we live in blissful ignorance of your diagnosis and prognosis.... sometimes it consumes me with what "tomorrow" holds. What will it be like? What will happen? How? When? What? (Depressing, I know). The pediatrician said something (and meant it in the nicest way): "when we're expecting things to happen, they won't... but when we least expect things, this is when they happen"... kind of a murphy's law theory, I suppose!!

And I was sitting thinking about you, and Elizabeth Barrett Browning's sonnet came to mind... and yet, how can I count the ways I love you? With every hard moment, with every ache and pain that we have dealt with over the last year, there is this deep deep love that I have for you. I love you, not only DESPITE your disability, but sometimes even BECAUSE of it.

My little soldier girl. How do I love you... let me count the ways....

Day 312 Chapter hopping

Been going through Miks' clothes, and putting aside all the clothes that she is now too big for; and I am feeling immensely sad about it. I should be celebrating that she is finally, at 10 months old, getting too big for her newborn (!!) clothing (although, she is still wearing 0-3 months sizes), but I feel quite nostalgic and sad about it.

Perhaps it's knowing that we have passed some of her life by... that I will never get those days back. The memories that these clothes bring- some sad, some happy. I know, I know, it's all a bit silly when she is still very much present in our lives... but, I dunno, it's closing a chapter I guess. Am I really ready to let go? Are you ever ready to let go? Maybe it's also just because another little T18 angel got her wings... little Emalee...8 months old. I read through the stories of these mums who have had to say goodbye, and it hurts so very much..... I'm just saying goodbye to clothes... how will I cope if I have to say goodbye to Mikayla!? *sigh*

I phoned the pediatrician about the "episodes" shes been having. She says it's difficult to ascertain what is causing them without actually seeing one of these episodes; and she has suggested we keep an eye on it, and if she has one again, and I am able to, to try video it, so that she can actually see it. Obviously our main concern is that it is a brain seizure, as having these can cause irreparable damage to the brain, which clearly we don't want.

Had a bit of a mare last night with Miks: cos we fed her around 8pm in her tube, but because we'd kept her bedroom light off, and just relied on the passage light for light, I think I didn't notice some pretty big air bubbles going in with the formula. So she proceeded to throw up half the bottle all over herself.... but obviously it was just formula sitting on top of the air- so it was just straight milk. I always get such a fright though! Such a wimp, I know! Thankfully she was on the leather couch at the time... Ah, the joys of leather.... sorry all you animal activists out there :( but there is nothing quite like leather... material is lovely, but try getting baby vomit out of that... not for the fainthearted! But good old leather just requires a good old wipe.

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*

Day 19

Miks "kished out" on Daddy's shoulder

Well, last night was a NIGHTMARE!! We decided that Miks needs to be in her own room, because Russ and I need to have our sleep. so the last two nights have just been awful. Just like any newborn baby, Mikayla quite likes being alert at 2am... and wants to be held. And, as any mum and dad of a newborn knows, at that time the parent is pretty pooped... and sense of humour goes out the window.

I had an old friend of mine visit today, which was wonderful. Miks was quite alert today- she gets more and more wakeful by the day. And her feeding is amazing! She eats between 50 & 75 mls per feed. And tonight she actually had about 100ml... probably not ideal for her tiny little tummy, but she has these little power feeds occasionally! And I just try and go with the flow.

Miks and Mommy

I kept thinking today that she seems so normal. How is it that she can have this ENORMOUS problem with her body, that affects her ENTIRE body... every single cell.... and yet, seem pretty much normal.... I know the genetic councellor did say that we would notice it when she failed to thrive.... but Miks seems to be putting on weight. She is becoming more alert. She has had no more apneas.... infact, the only thing that gives it away are some of her physical features. But so what? We're all different anyway?! She just doesn't seem SICK? I guess that's part of what makes this all so difficult.... the only "sick" thing about her is that her breathing is sometimes quite labored, which I attribute to the high pressure on her lungs. But that could sort itself out... couldn't it?!

I just feel so helpless. I am a doer by nature. A fixer. A go-getter. A fighter. And yet there is nothing that we can do. It makes me feel so inadequate. A failure. It's a difficult pill to swallow.

Look how fat my cheeks are getting

Holding Daddy's hand (er... finger!)

Day 11 - 14

Well, the days have gone by, and Miks is still doing well. She feeds well- seems to chow down extra before bedtime, which is fine. We routine feed her, interspersed with a certain amount of demand feeding. It works for us!

She continues to sleep in our bed. A real shocker for me- I have always been dead against my babies sleeping in my bed! We tried 1 1/2 nights of her sleeping in her own bed. But, frankly, it was a disaster. She was so restless, we were up and down 100 times... it was exhausting. At least if she fusses in bed (ours) we can simply calm her while staying where we are! Way better option (but shhh... don't tell anyone I said that!).

She has had some amazing alert days. She seems to know our voices- and will follow the sound of Russ' voice as he moves around the room. The other day I put her mobile on, so that she could listen to the music, which seemed to calm her (not that she is a fretful baby, but still). Then, we actually put her in the cot under her mobile... and she actually followed the movement of the mobile with her eyes, as it turned around and around. Amazing!!

On day 13 we took her to the pediatrician. Doctor said that her heart has no sounds of failure, and overall she is very happy with Mikayla's progress. She hasn't yet got back to her birth weight. She is currently weighing 2.38kgs. But we can see that Miks has put on weight. Mainly by her cheeks... they have got quite chubby! And very kissable!

Doctor has asked us to talk about certain decisions we need to make going forward. Because T18 is not life sustaining, and she has a propensity for picking up illness, which they think we affect her upper respiratory functions, we need to think about decisions such as how much and what kind of treatment we give her, at what point we intervene, and at what point we stop intervening. It was a really difficult conversation... ultimately it's like we're deciding on the life and death of my daughter!! It's wrong!! *Sigh* I just don't know that I have the capacity to handle this. I know God says He won't give us anything more than we can handle..... but the truth be told.... this is destroying me.... inch by inch.

Doctor has recommended physio for Mikayla to keep her joints flexible. They don't want her muscles to shorten, due to her pulling her legs and arms in- it will make Miks uncomfortable, and will make changing nappies etc for us difficult. A friend of ours, a physio, came around and did a session with us, to show us how to do the physio on Miks. Miks was so good. She was relaxed throughout the session, and was super relaxed afterwards. What a cute little chicken!