Tuesday, May 8, 2012

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.

Wednesday, April 18, 2012

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....


Thursday, March 1, 2012

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!

Sunday, February 19, 2012

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.

Tuesday, January 31, 2012

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.