We are the Stow Family and this is our story. Our lives are blessed by Love, Joy and Hope. Follow our sometimes interesting stories on loving our two boys, exploring parenthood, and celebrating a little extra - two parents, two boys and an extra chromosome!

Sunday, August 31, 2008

Mommy's New Accessory? Poo Pants!

Dearest Malakai,

I am sure I am not the first mommy... and I won't be the last... to wear Poo Pants! In fact, this is the second time I've worn Poo as an 'Accessory', but this time it was particularly comical!
Let me set the scene...
In all my 'mommy knowledge' I have figured out if I massage your legs on the nappy changing mat, you tend to have a big poo! "Well done!" I hear you say... Yes... but sometimes you have more than one poo and if I am too eager to remove your nappy, well then I am in for some excitement!
I was changing one such nappy the other day and all of a sudden, 'poof!' (or should I say 'poo'!) you had a projectile poo that landed right on mommy's white pants! Not just any (white) pants, but one of the only pairs that mommy fits into at this point (only 3 weeks since you were born, mommy doesn't quite have her figure back yet...)! So! I have to think fast! I quickly finish your nappy change, put you in your pram (awake, hungry and grumpy), and whip my pants off! We go to the bathroom together and I run hot water into a bucket to soak the pants, while you are crying and I am wondering how slowly water can run... really??? Then my cell phone rings... I am expecting an important call... I run through the house to get my phone in my underwear, past my domestic worker who looks at me as though I have lost my mind!
Oh well! It all has a happy ending because you got fed (and loved it), my pants came completely clean and I learned to give you just another minute or two to have another poo!

On another note, my boy, we weighed you last night at Megan's house and you are now a whole 3.6kgs! Well done! You are almost 1kg heavier than your birth-weight - growing bigger and stronger every day!

I love you madly my boy!

You are all my Reasons for Being,

Thursday, August 28, 2008

If you want to make God chuckle... Make a plan!

Dearest Malakai,

Just like any good story that starts in the midst of the action (with your birth), I thought I would take it back a few years and tell you the story of how you came to be in the first place!
As the title of this post will hint to you... I was full of plans!! But nothing happened as I planned... and everything happened as it should!
It was 2005 and Mommy and Daddy had been married for about 3 years and had just returned from a year living in Scotland. We loved it there and lived at a hotel, in a broken down old caravan, next to the longest fresh-water loch (Loch Awe) in the Scottish Highlands. It was a magical time for Mommy and Daddy - we lived with no responsibilities except to ourselves! What a wonderful escape we had that year!
We decided to come home in January 2005 and 'rebuild' the life that we had left behind. In the April of 2005 Mommy fell pregnant... I cried because I was scared and having a baby was not part of my plan... It turned out that it was not part of God's plan either because the baby did not live past 6 weeks. But, having been pregnant for that short time, I knew that I wanted to try again to become pregnant. It was as if I had been touched by the "Mommy Brush" and wanted to be pregnant so very badly!
December 2005 brought my second pregnancy. Daddy & I were so excited! But again, it was not part of God's plan and the baby did not live past 8 weeks. I was devastated... wondering why my body could not grow a baby properly.
It would be another year, my angel, until you came along! In December 2006 I found out that I was carrying you! This time, God's plan unfolded as it should!
The next 38 weeks were spent growing and expanding! My pregnancy was so simple! I had no problems at all! I even remember the screening test (for Down Syndrome), and my score of 1 in 900 chance. After that, I never had another thought that there would be anything out of the ordinary! Our monthly visits to the doctor showed you growing beautifully - right on schedule! I loved to see you inside me, moving around, kicking, turning around! In fact, you were so active that sometimes the doctor couldn't measure you properly! Also, you often had hiccups, causing my tummy to bounce ever so slightly!
I had decided to deliver you by c-section, but only once my true labour started - just so that we knew you were ready to arrive!
The day that you decided to start your arrival I met with the doctor one last time. You were completely 'engaged' (meaning your head was in my pelvis and ready to come) and my doctor still joked that you were on your way that night! I went home and that night, lo and behold, my contractions started! From 7:30pm to 10pm dad and I sat and counted the pains as they came, and when they were 10 minutes apart we headed off to the hospital. I had already packed your and my bags weeks before, not wanting to be caught off-guard.
Once we got to the hospital, however, the nurses were convinced that I was not actually in true labour. They put me in a hospital bed for observation and sent Daddy home. In retrospect, I wish I had demanded that daddy stay with me, because I spent the night in lot of pain, in a dark ward with 3 other sleeping women (who I didn't want to disturb), with very little pain management. I asked the nurses over and over again for more pain medication, because the contractions were so very sore, coming every 5 minutes, but they said they couldn't give me anything more. So, at about 5am, when my waters broke, I was so relieved that they would finally have to believe that I was in labour! I called your daddy and told him to come quickly and by 7:04am you were born! The pains of labour, the dark ward, being alone and scared to make a noise - that all became completely meaningless when you arrived!
My angel, your daddy put you on my chest in the theater and your eyes were open. I remember looking at your perfect little face and being amazed that you had just come out of my tummy! I was soon wheeled out of the theater into the recovery room, holding you tightly... It was then, when we were alone, that I looked at your dad and told him that you had his lips, my nose, but I couldn't figure out why your eyes were so different...
"They think he has Down Syndrome" daddy said.
Everything went hot, noises seemed to fade into the distance as a ringing noise started in my ears. "Are you serious?" I asked? "Are you messing with me?..."
I cried, your daddy cried. We were scared of what we did not know - and we did not know Down Syndrome at all!
Back in the ward we were visited by the Paediatrician. She showed us all the physical symptoms of Down Syndrome that she had seen - your almond shaped eyes, your ears being lower on the side of your head, the line across the palms of your hands, your second toes being very far from your big toe... Blood was taken to be tested - we would find out for sure on Monday...
"But all the signs are there" the pead said kindly but firmly. She did not want to raise our hopes or be too negative about the prognosis. So! We had the weekend to get to know you first, before a blood test could give us a scientific diagnosis. As the pead left, I remember her saying that if you couldn't feed, they would take you to Neo Natal ICU. Not feed? I was so clueless on Down Syndrome that I didn't even know that was a possibility! No way, I thought, you would feed and be by your mommy.
As God's plan would have it - you did feed... absolutely beautifully! You also seemed to miss the memo that said that you would have low muscle tone... because you were (and are) so strong! We had all sorts of tests run on your heart, eyes, hearing and thyroid - all came back fine.
You are beautiful my boy. I look at you now and still forget that you have Down Syndrome! I will not let an extra chromosome tell me who you are going to be! Scientific blood analysis cannot tell me if you going to enjoy riding bikes or flying kites or painting pictures... Science cannot tell me of the love that we share, of the bond between us! You are part of me and I of you! You are my child, my angel, my Reasons for Being!
I don't know how Down Syndrome will form part of our lives - but I welcome and honour it because you have it, but it does not have you! I have already come across a global community of families with children who have Down Syndrome and their stories fill my heart with hope and joy! As I educate myself on Down Syndrome, I remember that you are unique. Only time will tell who you are, and what your strengths and challenges will be.
I no longer make plans... I know that that is really quite silly considering the journey I've been on! With your and daddy's help, I live in this moment, embracing the perfection of reality.

Ok, and one last time for this post - I love you my angel boy!

You are all my Reasons for Being

Monday, August 25, 2008

Letter from Granny Dye

Dear Malakai,

You continue to surprise me with your spirit and tenacity! You are so strong and so sure of what you want - I can't believe that at your age this is even possible!! I will always do my best, angel, to give you what you need - like a tigress with her pups, I am fiercely in love with you and want to keep you safe and sound!

In the meantime, your Granny Dye has written you a love letter as well! And here it is - for you!

My Darling Malakai,
Ever since your Mommy and Daddy told me that you were growing in Mommy’s tummy, I eagerly waited for you to arrive. I didn’t know anything about you yet so I imagined a brilliant clean canvas and that you were creating your very own unique work of art that would be revealed when you were ready. When you had been growing for 28.5 weeks, we saw a sneak preview of a very handsome young man. My heart started to flutter in anticipation of meeting you.
When we look forward to something really special, it seems to take a very long time. As you continued to grow, your Mommy told me a lot about you: You liked to exercise at night when she lay in bed; She played ‘tickle’ with you because the loved the feeling when you moved around inside her tummy; your Mommy even knew when you had hiccups; so many stories about you even before you were born!
Then the day arrived when you were ready to be born. Your Daddy sent me a message early in the morning to let me know and I was so excited – Today I would meet you! It took 7 hours for me to get to you and cradle you in my arms. Wow! Words are not adequate to describe the wave after wave of feelings that washed over me. In my arms lay absolute perfection – YOU, my darling grandson!
You have started a new exciting and adventurous chapter in my life - The priceless gift of experiencing life through your beautiful fresh eyes. A life of full of love, innocence, awe, pleasure, adventure, excitement, laughter and learning. You are my wise teacher Malakai, and I am your eager student.

You are all my Reasons for Being

Saturday, August 23, 2008

Some Pictures - So Cute!

Dear Malakai,

I couldn't resist my boy! This morning you were playing so nicely with Dad! This is the first time that Dad has seen you so awake and alert - he loved it!

Here are some of the pictures that I took from your first real Play-Time with Dad!

You are all my Reasons for Being

Friday, August 22, 2008

Angels, Angels... Everywhere!

My Dearest Malakai,

You are now two weeks old! WOW my baby, you have done so well! All those things (those scary things...) that creep into my mind sometimes are quickly blown away on the wind...
"What scary things mom?" I hear you ask... Well, sometimes I start to think too far ahead, to challenges that are yet to face us in times to come... which is really silly because I can't know what the challenges will be until they arrive! So, I get a bit flustered and worried and scared of the unknown...
"So how do the thoughts blow away then?"
Well! All I have to do is watch you sleep, hold your little hand and feel the strength in your grip. I just need to look into your eyes - pools of blue reflecting the light, so bright and eager to take in your surroundings. I know you are ok. I know you are wise. I know you have a path that was chosen before I met you as my son. Knowing these things helps my scary thoughts to just lift off and blow away on the wind!
Also, my dear angel, the support and well wishes we have received from family, friends and even strangers over the past two weeks has astounded me! It seems to be that you have an army of angels around you! All of them are making themselves known and their love is like beautiful colourful brushstrokes on the canvas of our days!
Malakai, you have already taught me so much in your first two weeks!
OK! You have taught me that your father is so loving, positive and wise - someone I need to listen to more (but don't tell him that)! You have taught me that there are angels all around us if we ask for them and allow them into our lives. And most importantly, you have taught me to stay in the moment, focus on the goodness of today rather than worry about a tomorrow that has not yet revealed it's challenges!
Malakai, you and your daddy are my spotlights, showing me the path to walk that is most kind and compassionate.

You are all my Reasons for Being

Wednesday, August 20, 2008

Healthy & Happy!

Dear Malakai,

You are now a whole 12 days old! I can't believe how fast these 12 days have gone and how much you've changed already!

You love to eat (alot!), and you love to sleep (alot!). Dad loves to come home at night and play with you - he misses you during the day! I get to spend all day with you, watching you sleep, feeding you, playing with you when you wake up!

Although you have Down Syndrome, we are so proud that you are perfectly healthy! Many babies with DS have problems with their hearts, eyes, ears, muscle tone and thyroid issues and you are clear of all these! We are so happy and blessed that you are healthy! This means that as we grow together you will be able to do all the things that you want!

I have found a fantastic place for you to visit when you get a bit older called the Baby Therapy Center. There are many people there who can assist me in helping you reach your goals and milestones! I am very excited to get started with the games and excercises!

This is just a short letter tonight, because I am a bit sleep deprived (yes... you keep me up at night... but I love you all the more for that!)... So my brain just isn't as sharp as it once was!

I love you my angel!

You are all my Reasons for Being

Monday, August 18, 2008

And the Journey Begins!

I thought it would be apt to start this Love Story with the first letter that I wrote to my baby boy - on the day that the doctors confirmed he had Down Syndrome (although he was born on 08/08/08, we did not know for certain that he had Down Syndrome until 11/08/08).

Today was a difficult day my angel boy. Today we found out, without a doubt, that you are a Down Syndrome baby. Now, you may ask "What's that mom?" and I can only tell the little I know about it so far. It is a genetic thing that happens sometimes with babies from all races, countries and backgrounds, and it is basically an extra chromosome that makes you part of many little babies that are born like this.
"So?" you ask (quite rightly!)... exactly, my angel!
Just like there are many people with the 'normal' amount of chromosomes that are all unique and special, you too will be unique and special in your own way!
So, even if I could tell you more than this now (which I can't because I am still learning), I do know that the Medical & Scientific information cannot tell me who you are going to be and how you (and your special extra chromosome) are going to grow and be the perfect child that you are!
"So why the difficult day then mommy?" I hear you ask...
Well, sometimes (most times actually), grown ups believe that there is such a thing as 'not perfect'. We believe things should look, perform and 'be' a certain way and when they aren't, we become scared and call this 'not perfect'. All this is actually a silly story we tell ourselves to scare ourselves! So, mommy and daddy were not expecting our perfect baby boy to have an extra chromosome, and when we found out we got scared of what we didn't know.
Well, the simple answer is that we love you madly! I look at you (all 4 days old worth!) and my heart crumbles! I love you more that I can describe in words, but if I had to try, then it's like the sun breaking out after a Highveld Afternoon Thundershower - brilliant, new, fresh, magical, mystical, beautiful... You are me, you are your dad, and you are you! Forever will we be in you ad therefore a part of us exists outside ourselves... within you Malakai!
Today's 'difficult-ness' has (like the sun after a thunderstorm) washed away our fears. We can now focus on the Brilliant, New, Fresh, Magical, Beautiful Malakai!
My precious boy, I love you so much I want to pop!
Here's to a Magical Journey together!

You are all my Reasons for Being.