Happy birthday angel child

Today you are two years old, and yet forever 16 months 2 days.


There is not a day goes by that I don't miss you, and not a second that passes that I don't think of you. I "buried" you along with a multitude of hopes and dreams of what my life would look like. And part of today is a remembrance of that, which brings with it immense sadness.

Two years ago today, we were waiting in the hospital to deliver our very special baby girl. I was nervous and anxious.. I thought it was because of the c-section or because I wasn't having the natural delivery I had hoped for... with hindsight, I know now it's because somewhere in my core, I knew something was wrong, even though everybody else said everything was fine. I look back now and think how trivial so much of my worries were. How silly they all seem now. I was so focused on the delivery, but in the end, that didn't matter. You came out fighting for your LIFE. It took them 3 minutes to get you to breath on your own; the next 48 hour were touch and go.

I remember those first two weeks. They will forever be etched in my mind. Those feelings. Such pain. Such disappointment. Such fear. I have never felt so lonely and scared in my life. The thing is, Miks, the part that has always hurt the most, was not being able to help. Not being able to protect you. I would've given my life to save you. To make you whole. To make you LIVE. But I couldn't. I could do nothing.

And then I had to spend the next 16 months knowing that I would have to say goodbye. I loved you so much. I loved you long before you were even born, before you were even conceived. You will ALWAYS be a part of me. You will ALWAYS be my baby girl. And I will ALWAYS miss you.

Happy birthday my darling daughter. I hope you're having the most wonderful time in Heaven. Know that the world is an emptier place without you, as is my heart. You will never be forgotten. Ever. I am so proud that you are my daughter. And I am sorry that I couldn't do more.

I love you. Now and forever.

Counting down

I love this time of year. It's the smell in the air. It's not too hot, but not too cold. The grass is still green, and the air fresh. And it's my birthday month, which may have something to do with it. 

But it's also your birthday. 

Your second birthday is coming. And you're not here to celebrate with us. A birthday. The day of your birth. I will never forget the day you were born. As long as I live. As I countdown to your birthday, I am a mix of emotions. Joy, as my life is so wonderful in so many ways. My blessings too many to count. But sad. Sick to the stomach. How will it feel to know it's your special day, but that you're not here in my arms? Oh! To see you smile again! And your eyes. How I wish I could look into those big blue eyes of yours. 

There is not a single day that goes by that I don't think of you. In fact, there probably isn't a day that goes by that I don't also TALK about you. Maybe I need to. Perhaps it's my way of keeping who you are alive; because, while the world has carried on without you, we, your family, live feeling your absence daily. For someone so tiny, you sure had a huge impact. You will live on forever in me, Mikayla. Forever. 

And while everyone else carries on, I will forever wish you were here, forever wish for more for you... for me... for us.

As I posted nearly a year ago:

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

Baby blue eyes....

 

Trisomy Awareness Month

The month of March is Trisomy Awareness month.

A trisomy is the presence, within a persons cells of an extra chromosome instead of the standard two strands (hence the "tri" for three!). The most common Trisomy is Trisomy 21 (Downs Syndrome), followed by Trisomy 18 (Edwards Syndrome), and then Trisomy 13 (Patau Syndrome).

These dear babies are often given little or no hope of a life or future, or chance of survival, particularly as you go down the "rarity" scale. In fact, some are never even given a chance at all.

I understand the difficulty of a life with a challenged child. I lived it for 16 months. I had the highs, I had the lows. But the thing is, the Trisomy babies I meet, including my special Mikayla, are very often FIGHTERS. Whether they fight for 1 hour or 65 years, they have a spirit in them, that the rest of the "healthy" world don't often have. They are courageous, and offer so much to a broken world. They bring immense joy, and leave behind a river of tears in their absence. They're special in every sense of the word. And while the road is hard, there is hope... and some soar through their adversity.

And what much of the world DOESN'T realise, is that they're humans. Just like us. They hurt. They laugh. They love. Just like us. And just like us, they are WORTHY.

Every Trisomy child is a gift from God. They come with broken bodies sometimes, but they have whole spirits, just as God created them- and just as God sees them.

Learn about Trisomys. There are more cases out there than you know. There are translocations, Mosaics and Partials. And the presence of other Trisomies. Although rare, they're there. And there are mums who need to have time out sometimes, perhaps a dinner with their husband, or a meal. Sure, they look like they're coping, but that's cos they have to. Don't forget about them. Sometimes it's the small things that can make such a big difference.

Mikayla had FULL Trisomy 18, meaning that EVERY CELL in her body contained a third strand of the 18th chromosome. Yip, in a nutshell, my child had something EXTRA. I reckon that made her EXTRA-ordinary!



Miks when she was about 4/5 months old. I LOVED her goofy smile that she did when we wriggled her legs. Miss that smile like MAD!

The who, not the you.

I read this great article.and it got me thinking.

I loved my daughter ferociously. More than others love their children? Perhaps not. But I loved her with a defiance against what was the norm. I loved her despite discrimination. I loved her despite a reality beyond most parents comprehension. Perhaps that does make me a dragon mother too.

Loving your child, still wanting the most for them, still hoping for their best, but yet within the contraints of their reality, and with the certain knowledge that you will bury your child, and not the other way around, seems so impossible on paper, and so cruel to the heart. And yet that's what mothers of terminally ill children do. We know there are realities that we will certainly have to face... Realities that before we would've sworn we wouldn't survive them, realities that make any parent shudder. Realities we still wouldn't wish on even our worst enemies.

Saying goodbye to your child inch by inch, day by day, second by second is all consuming. Suddenly you are defined by your child, and not the other way around. Suddenly your world cannot be about you. I like to believe that before I had Mikayla, I always put others before me blah blah blah... But looking at it now, I realize, that like all humans, most of my endeavors were self seeking. For self fulfillment and self gratification. The good old WIFM principle. But when Mikayla was born, and this new world of Trisomy 18 hit us as a family, suddenly, my world was turned upside down, and everything I believed was challenged. I couldn't revolve Mikayla's life around what I wanted. It was impossible, as much as I tried. 

She was going to die, and potentially soon, and most certainly before me. There was no way around it. Every hope and dream I had for who she would be. Ended. And every dream I had for who I hoped to be. Ended. And on that fateful day on September the 10th, 2011, I had the unthinkable experience of holding my daughter the moment her heart stopped pumping, and watching the light disappear from her eyes, and knowing that suddenly she was gone.

Does that make me particularly special? I don't think so. Does it make me particularly strong? I'm not so sure. You see, the parenting magazines don't give you tips on  how to let your child die. The parenting magazines don't tell you at what BPM your child's heart is giving out. The parenting magazines don't tell you how to change a feeding peg, or comfort a neurologically challenged child, or to comfort a child that has cried, nonstop, for 9 hours without any explanation at the source of the discomfort. You see, us parents, we prepare our children for life. And rightfully so. But the downside to that, is that we then arrogantly think that then we have a lifetime with our children. And in that, it means we can still put our needs first. Pursue our endevours first. Because, well, our loved ones are here. We think it is our responsibility to capture the heart of who we are FIRST and to THEN fit our loved ones around who WE are. 

But when you have no choice but to fit yourself around someone else, you realize how insignificant we really are.... And how fickle we are. 

For 16 months, my identity became Mikayla. I was Miks' mum. And I'm proud of that. The irony is that I was actually the same person that I am now, before Miks was born, and I'm still that person post her death. Circumstantially I have changed, and yes, she changed me perhaps in the way I respond to the world around me but innately I'm still the same. You see, I've realized something: My identity isnt about what my name is. It isn't about where I live. It isn't about who I keep company with. It isn't about what I do. Its not about my title, or strengths or weaknesses. Those are my attributes. But who I am is something engrained so deep in me, that few have taken the time to find.

I think the beauty of my relationship with Mikayla is that because she couldn't be what I wanted her to be, and because that altered what I hoped I would be, it made me see her for what she WAS, and perhaps even allowed the person I was to shine. It made me search for her soul... Her innermost being, because I needed to know her on a level beyond what they teach you in a parenting magazine. I had to understand her progress and her milestones and her personality based on her individual accomplishments, and her spectrum, and not the acceptable norm.

And I wonder sometimes if we shouldn't do that everyday. With all our children. With all our loved ones. I would love those around me to know ME based on who I am in the deepest part of my being, and not what I expect to be labeled as, or what people decide to label me as.

I loved my daughter. I loved her with a ferocity I didn't think I had in me. But I am more that my daughter. Just as she was more than me.

But the conundrum is this: am I prepared to put my identity, and my pursuit of recognition and fulfillment at the forefront of my life, at the expense of my family? Mikayla has taught me that the answer to that is no. To me, I think I'd rather be a no-one than risk missing out on those I love, today.

Do I get it right all the time? Absolutely not! But you see, I understand that today is fickle. I understand that tomorrow only has a 50% chance of coming. I understand that not all parents outlive their children, that not all goodbyes happen before tomorrow comes. And I know that even though I had a certain knowledge that Mikayla would definately die, that even when that truth came to pass, it came with shock, and indescribable pain. What about when you're EXPECTING tomorrow and it doesn't come? Then what? Is what you're pursuing today worth it? Are your loved ones fitting into your plan? Or are you building you pursuits around them? Because I can assure you this: when the light goes out, and the last breath is taken... When tomorrow arrives, not much of what you DID today matters. But WHO you did it with? THAT counts.

All I know is this: in the end, there are only two things that matter: the love of God, and the love of our loved ones. And both require active pursuit on our part. 

And both are selfless acts that see us as participants, not the lead role.

Thank you

This is a seriously overdue post. I'm not sure what the delay for it is, but I have finally decided to write it.

We have been through a pretty tough season. We welcomed our much awaited daughter into the world with much excitement, only to have those dreams snubbed out in an instant. Instead our sweet angel daughter was sent home with us "to die".

I started this blog because I was hurting. Alot. Those early dark days were the loneliest of my life, and at one stage, I didn't think I'd make it. But then, the most amazing thing happened. Firstly, putting pen to paper started my healing. It helped me step back from the chaos, and see it from a distance. When you're in the thick of it, I think stepping back to look really does help. And then secondly, in my reaching out, to seemingly no-one, I got found. Found by a wonderful community of people, who have loved me and my daughter, and have kept me from sinking. Some of you I know, many I have never even met. You have shared my highs, and wept in my lows. And I am just. So. Grateful. 

Thank you for praying for us. Thank you for loving my beautiful little girl. Thank you for not judging me when I lashed out. Thank you for words of encouragement. Thank you for sharing my pain, and for sometimes sharing yours. 

When you go through something like this, it's amazing what surprises lie around the corner. There were many people, strangers and friends alike who surprised me. But I know there are a few unnamed heroes in our journey, I have heard of your warrior spirits- who prayed and supported us silently in the background. Some of you I will never even know. To you: thank you. Your faithfulness in the small things has not gone unnoticed. Not by me. To those who loved us through this time in our life: there were days you picked me up when I couldn't pick myself up- even if you don't know it. 

Now that we're out of the thick of it, so to speak, it's strange looking back and seeing so much that I couldn't see whilst in it. Some good. Some bad. But what reigns true more than anything else, is two things:

We were loved and supported by strangers and friends, both far and wide. I certainly did not deserve all that goodness. But I am so grateful. It was good to know in those lonely days that you were out there. Somewhere. 

But the other thing I can see, is how impossible it wouldve been to have survived this without the grace, love and support of my Heavenly Father. I am still angry. Perhaps now more than while Miks was alive. Because while she is dancing in Heaven, I am still picking up the pieces. I am still feeling sore. Deserted. Forgotten. Broken. And now, more than ever, I am trying to grapple with why my loving Father would let me go through this? Why He hasn't healed me completely? And yet. I know that He was there during our journey. And I know He continues to be there, even though some days I don't want to let Him in. Even though His silence breaks me to my core. Even though this emptiness in my soul makes me feel like He has forgotten me. Yet I am trying to still cling. Somehow. He took us through. Surely He will continue to do so?  For now, I say Thank you to Him too though: Thank You Lord that You carried me even though I didn't always feel it. Thank You that You held me, even when I felt alone. Thank you that You loved me even though I'm not very loveable. I know I don't deserve it. Please know I am trying. Please don't give up on me. And I promise to not give up on You either, though sometimes I feel it would be easier. Thank You for being my rock when my world was shaken. 

As we tread these murky waters without my darling girl....as we learn a new way of life... My prayer is that You won't forget me... And that perhaps one day You'll give me back my wings and my voice, that I may soar.

And to all you wonderful warriors: there really aren't words that sufficiently convey my gratitude. But just know that every prayer, and every whispered word lifted up for me and my family... Each one is embedded deep in my soul. I hope I can "pay it forward". May you be blessed as you have blessed my family.

Post my first Christmas without you

Chiristmas, I've always loved Christmas. It's such a happy time. A time of family, of celebration. We were at home this Christmas and my folks were with us. And. Well. It was good to be with family, and we had fun. But boy, I felt your absence.

There's this huge gaping hole in my heart that cannot be filled. That place that was made only for you. I can't believe sometimes how someone so small, as you were, could have been so LARGE in our lives. It's a strange feeling: feeling so utterly fulfilled, and so grateful and happy with the things that I have and our lives in general (my three healthy, wonderful boys, my gem of a husband, our home, our health etc); and yet feeling so terribly lost, so dreadfully empty, and somehow, sometimes desperately alone.

I remember when my father in law died, my mother in law spoke of how after his funeral, she had to sit in this lonely home watching all the flowers she had been given, whither and die; and how, at that point, the calls stopped coming, the visitors stopped popping over; and yet, her grief hadn't suddenly ended. Perhaps at that point, it's where some of the grief actually begins. I think, because of the nature of our journey, in that we actually grieved you when you were born, I understand this conundrum: that grief begins somewhere where concern ends. I look back now, and I realize how lonely those days were, how hard they were.

Don't get me wrong, this is no pity party. There are many who understand. Other mums who have lost their babies, and, after all the hype of your death had died down, have phoned me, or messaged me to see how I am. They know. And we're so busy, and happy wih the boys, and our lives, that I am so very happyrather than drowning in a pit of despair (I'm one of the "lucky" ones though).

But, well, Christmas hurt alot. And the past few weeks have dug up all the regret, the anger and the disappointment at that which I have lost. That which was taken from me. That which can never be repaired or given back. And sometimes, seeing everyone's joy and happiness is enough to make me want to scream. Sometimes I just want to close myself off from the world. Give up. Roll into a ball and stay there forever. The hurt is too much. I mean, my daughter died for goodness sake! And sometimes I just want somebody to see that, but no one ever does. The curse of being strong? That people tend to forget about you.

I miss you, Mikayla. It's been a little over 3 1/2 months since you passed away. I think that your death will somehow haunt me forever. It all happened so quickly. I know that I got to say everything I wanted to say, and I know that it was ordained to happen as I had prayed it would. And yet, I cant help wondering. In the last month or so, you had changed so much. What would it have been like if you were still with us now? Are you happy in Heaven? Do you miss me the way I miss you?

How do I fill this hole, in my heart, Miks? I dunno. I guess, sometimes, I just wonder why everyone else seems to be rescued, but I don't. *sigh*

Ok, I think that's enough rambling. I seriously sound like a spoilt little brat. I really do have so much to be grateful for. And grateful I am. Sad. Yet happy. Empty. Yet fulfilled. Lonely. Yet busy and full of life.

Life is good. But I will always miss you, my darling daughter. Always. And that place where you belong, will always be empty, like a canyon in my heart.

The Pursuit of Perfection

In the eyes of the world, Miks, you were not perfect. You held none of the glitz and glamour that so many spend their entire lives trying to attain. You did not live a "full life" (read: until you were old and grey). You had nothing fancy to offer. You were, some people would say, a simpleton. Just nothing special at all.

Another T18 mommy and friend, had some awful comments posted on her videos of her sweet boy, who's over 2 years old. Really, in a nutshell, they questioned the value of his life, and questioned the parents love for him, because, in their words, the parents were being cruel to this little boy.

And it's made me think: who determines what the value of a life is? The doctors? The parents? Your friends? The teachers? Is the value of your life determined by fame? Or fortune? Perhaps by influence or power? Is it knowledge that holds weight to value, or is it achievement and recognition?

Knowing what I know now...would I change it? Would I go back, and take it all back? Would I? Having gone through what I went through, and having seen you go through what you went through, would I go back and change it because your life wasn't worth it? Or was it?

You see, the question that I keep wondering to ask is not whether your life was worth LIVING, but rather, would your life have been worth TAKING?

When people talk now about terminating T18 babies, I don't look at that through the lens of doctor, or scholar, but rather, well, I look at it as if someone would be asking me if I'd be happy that they took the life of my daughter. Please understand that I don't mean it as a criticism or judgement. It's just that, well, Miks, for everything that you were not, you WERE still my child. You had personality, and spunk, and character. You were sure of what you wanted and didn't want. You were a person. Just in a different to mostly everyone else.

But so what?

You see, in our pursuit of perfection, we're so busy qualifying everyone around us through our own lenses of approval, that I think we're missing out on the potential of the beauty below what we're seeing. If we instead loved one another, as God has commanded us to do, and as Jesus did, we would only see the wonder in one another, rather than constantly de-valuing, qualifying, and segmenting each other.

And I guess that's the point. When it came down to it, I was well aware of everything you were not. I could see your "imperfections". Often they hit me squarely in the face as we battled with things other parents have not had to. But, at the end of it all, we saw YOU. Petite, beautiful, angelic YOU. And you were perfect. Not by worldly standards, but by YOU standards. We couldn't qualify you. And you had no desire to be qualified. You just wanted to be loved. And since we couldn't give you anything else, that's exactly what we gave you... in abundance! I don't know that any other child has been kisses that much in 491 days!!

Yes, I think I will wear Mikayla lenses from now on. They say that every life has value, regardless of societies expectations. And that the place to start with is always with love.

Eternity in our Hearts

Last night I couldn't sleep. I couldn't stop thinking about you.

I was remembering you just before you passed away in the hospital... You had got so LONG. You were looking more and more like a toddler (in length) than the baby you had remained for so long. And I got really sad about it.

If you had lived a long "earthly" and "normal" life.. well... I often think how you would have been. I think you would have been blonde. You would've had the biggest blue eyes. You would have been so very beautiful. I think Daddy would've had his hands full if you had been a teenager. You would've had a pale creamy skin, maybe freckles on nose.You would've had long delicate fingers, but your mothers butt (shame!). You would've had a great sense of humour. And would've been doted over by your brothers endlessly.

But you're not here any more. Death took you away. And it hurts so much. You see, we were created with Eternity in our hearts. Every single one of us. Ecclesiasties 3:11 says this: "He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end." (Bold mine)

That's why death is so hard, and so WRONG to us, because we have eternity in our hearts. How, when our hearts are living with eternity, can we accept or fathom death when it is the opposite of eternity? Death is so final. In earthly and human terms, it's the END of something. But eternity has no end. It's such a conflict, and I believe why we struggle so much when we lose someone.

I guess the other end of that coin, is that death ISN'T the end. Death has no power over us. You see, Jesus came that we may have LIFE. And while that's Life In Abundance while on earth, it's also LIFE beyond this earth.

I have to remind myself of this... often. To know that while I have missed out on so much of YOU on this earth... I will (hopefully, if I get my act together), have an eternity to know you. And maybe in Heaven I'll get to skip with you, hug you, do your hair in plaits. And to see those big blue eyes....

Oh how I miss those eyes.

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.

Sad today

I am feeling sad today, Miks.

I wonder if you'd been born in a different country, perhaps with more opportunity and access to medical funds and assistance, would you have fared better?

I am so scared that I didn't do enough. I am sitting here typing, with tears streaming down my face, scared that you didn't get everything you deserved... and that it is my fault.

You were the most beautiful girl in the world. Those big bright blue eyes, and that beautiful smile will resonate in my soul for all my days on this earth and beyond. How will I live the rest of my life without you? I am trying to shuffle along, and am for the most part absolutely fine... but as I sit here alone... well... I wonder if God is punishing me for all that I have done wrong in my life? I know that isn't true... I know that God is a good God. And I know that you're in Heaven. And I know that you're free, and I know that I'll see you again. But with all the "I don't know's" lingering in the back of my head... sometimes it blurs my vision of the "I do know's".

My daughter. I can't believe I had to say goodbye to my daughter.

As we take one day at a time, the reality is that as life goes on around us, we're still dealing with the aftermath. One of the realities of your life and death, is the grief that your oldest brother is having to cope with. He's a gentle, sweet soul, who is a deeply emotional- almost old soul- and he is hurting. But he doesn't know how to filter what he is feeling, and a result is his performance in school (poor concentration); and his occasional (sometimes even regular) outbursts of over-emotion, around often the smallest things.

It was one of my other fears from the moment you were born: I was so scared of the repercussions it would have on the boys. What is their view now on life and death? What is their view on family? On having a family of their own? How will this effect them, both now, and in the future? I am so aware of the emotional scars that we all bear... and more than anything, I must protect the boys from damaged and scarred hearts. I hope, and I pray, that I free them of carrying scars that will adversely affect their future and the relationships and decisions they make as teenagers, and as grown men.

We are dealing with it aggressively, so to speak. I hope, along with the love and time we're giving to them and them alone, that it will be enough.

Death may end a life on earth, but as your soul continues to live in Heaven, the wave of your life here on earth, continues to move, both positively, and negatively. I must be mindful of both.

I wanted to add this video in... I love your sweet little gentle smile in this clip. Oh, how I miss you...

What will matter

I came across this on a friends FB update (you can find a wealth of knowledge on FB.. ha ha!).

I loved this... because we spend so much time worrying about accumulation, accreditation, and appreciation... that we forget about what really does matter. In the hard moments, Miks, I remind myself that your life was a Glory Purpose (thank you Candice, via Tes), and that I believe you have touched enough people's lives that you have made an IMPRINT. Wow! 

Forgive me if I have told you this story before: I remember once being asked by a friend (it was a deep conversation... we were 16 years old, and were talking about L.I.F.E.).... he asked me ... "what do you want to do with your life?". My answer was... wait for it.... "I want to make a difference in someones life". He scoffed me off, and told me that I could give someone a loaf of bread and that could make a difference (which is absolutely true, but not AT ALL what I was talking about). You see, I think, deep down, if we have a God calling, and a God purpose on our life... at some point or another, we're going to touch someones life enough to make a difference. Isn't that what the Gospel is all about? Making a difference. As Mr Pollock puts it: "No change... no Jesus".

And you, Mikayla, I believe YOU made a difference in peoples lives. Maybe it was a simple as making mums give their children an extra big squeeze before bed, maybe it was as big as giving their lives to Jesus. And you had no agenda. No airs and graces about you. You, Mikayla, you MATTERED!

WHAT WILL MATTER
by Michael Josephson
Ready or not, some day it will all come to an end.
There will be no more sunrises, no minutes, hours or days.
All the things you collected, whether treasured or forgotten, will pass to someone else.
Your wealth, fame and temporal power will shrivel to irrelevance.
It will not matter what you owned or what you were owed.
Your grudges, resentments, frustrations and jealousies will finally disappear.
So too, your hopes, ambitions, plans and to-do lists will expire.
The wins and losses that once seemed so important will fade away.
It won’t matter where you came from or what side of the tracks you lived on at the end.
It won’t matter whether you were beautiful or brilliant.
Even your gender and skin color will be irrelevant.
So what will matter? How will the value of your days be measured?
What will matter is not what you bought but what you built,
not what you got but what you gave.
What will matter is not your success but your significance.
What will matter is not what you learned but what you taught.
What will matter is every act of integrity, compassion, courage or sacrifice that enriched,
empowered or encouraged others to emulate your example.
What will matter is not your competence but your character.
What will matter is not how many people you knew,
but how many will feel a lasting loss when you’re gone.
What will matter is not your memories but the memories of those who loved you.
What will matter is how long you will be remembered, by whom and for what.
Living a life that matters doesn’t happen by accident.
It’s not a matter of circumstance but of choice.
Choose to live a life that matters.

I keep asking myself why I continue to post in your blog when you're gone. Well, I suppose in part it's because this blog was started in the first place because I needed a place that I could channel and sort through what I was feeling, and what we were going through. In that process I got to introduce you to the world, and they got to see into our little world. My need to channel some of my emotions: well, I don't think that's changed. While I have grown so much in the last 1 1/2 years, and I believe I am able to deal with my emotions well as a result, I still feel your loss. I am not sure your story has come to an end, really. Maybe that's it: maybe I just want to keep telling your story, and keeping your legacy alive. Maybe that's a sad way of keeping you alive, or maybe it really is that even though you're gone, your story actually hasn't ended. As Russ said at your service: death has no power over us as a family.

Or maybe I'm just a big mouth, who can't shut up. I mean, I'm just saying.

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.

Wondering

I am sitting here alone. Just wondering.

Wondering how you are?
Are you happy?
Do you have a little window from heaven that you can see?
Can you see the hole in my heart?

Wondering if I did enough?
Wondering why God decided it was your time to go?
Wasn't I being a good enough mum for you?

Wondering why God chose us?
Why you chose us?
If we were chosen at all?

Wondering how to let go of my daughter?
The daughter I always wanted.
The daughter I had.
The daughter I'll never have.

Wondering how to live each day being a mother who lost a child.
Wondering if I have a big sign on my head that says so?
Wondering if anyone even cares?

Wondering how when Jude's friends come to play, and their mothers ask about the sweet baby girl on my wall, how to explain to them your story on a 15-minute afternoon visit.

Wondering how I will get to tell people about you.

I don't want to stop talking about you!
Wondering if that's some sad way of trying to "keep you alive"

Wondering about that sweet little girl I saw in my dreams 3 or so years ago.
Was it you?

Do you miss us Miks, like we miss you? Or are you relieved?

Wondering how in an instant everything that we knew to be true in our world, could flip 180... when you were born, and again when you died.

I feel this strange sense of emptiness that I can't quite explain.
I am sad, but fine. Really fine.
But who I am just isn't quite bubbling to the top. Did you take the froth off the cuppachino that is me, when you flew up to heaven?

Wondering if I will ever be the same again?

Thinking I won't.

Thinking your arrival changed me for the better. Your departure changed me again. This time, I'm not sure how.

I hear you all the time, even though I know you're not here.

The me that I thought I would be. She's not me, and I am not she.

I have such a happy and fulfilling life. But I have two huge holes in my heart. That will never be filled.
That makes me sad.
Very sad.

I miss you, Mikayla. Every day. Always.

Wondering if you miss me too?

Mikayla - Who is Like God?

"She was so very special
And was so from the start
You held her in your arms
Now always in your heart

And like a single drop of rain
That on still waters fall
Her life did ripples make
And touched the lives of all

Shes gone to play with angels
In Heaven up above
So keep her special memories
And treasure them with love

Although your darling Mikayla
Was with us just a while
She'll live on in all our hearts
With a sweet remembered smile

Always in our hearts "

Written for Miks from our friends: Texas Rod, Trina & Bridget :)

I am missing you so much, my baby girl.

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.

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.

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.

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.

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.