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.