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!
Based in Pretoria, South Africa... My name is Loren, I am married to the LOVE of my life and on 08/08/08 we welcomed our first child into this world! Malakai is healthy, he is precious and he is the light of our lives... oh and he has a little something extra (commonly known as Down Syndrome).
On 29/01/2010 we had our second boy - Harlan. We are so excited that Malakai & Harlan will grow together as brothers and friends!
This is our journey into acceptance, love, the understanding that today is our greatest gift, and the celebration of our beautiful, perfect, amazing sons!
Please email me if you'd like to make contact. I am happy to discuss anything with regards to DS. If I can help I would be honoured! firstname.lastname@example.org
man of many talents - older brother... big flirt... super adventurous... all growed up no?
Making his feelings known... Harlan thinks that sleep is for the birds and much rather prefers to be 'in the know'...
Blessed are you who take the time to listen to difficult speech:
For you help us to know that if we persevere,
We can be understood.
Blessed are you who walk with us in public places,
And ignore the stares of strangers,
For in your companionship,
We find havens of peace.
Blessed are you who never bid us to "hurry up",
And more blessed are you
Who do not snatch tasks from our hands to do them for us,
For often we need time rather than help.
Blessed are you who stand beside us
As we enter new and untried ventures.
For our failures will be outweighed
By the times we surprise ourselves and you.
Blessed are you who ask for our help,
For our greatest need is to be needed.
Blessed are you when you assure us,
That the one thing that makes us individuals
Is not in our peculiar muscles,
Nor in our wounded nervous system,
Nor in our difficulties in learning,
Nor any exterior difference.
But is in our inner, personal, individual self
Which no affirmity can diminish or erase.
This week I have had to sit back and breath. Since Malakai's birth, I have waxed lyrical about acceptance and love and all that good stuff. And yes, I love and accept and am very proud of my beautiful boy! But this week has brought Malakai's challenges to the fore. Up until now, Malakai has developed pretty much on par with other little babies his age. It is only now, as he starts to try and sit by himself that it has become clear that he is not quite on par anymore. And it isn't for lack of trying! He just doesn't have the strength and co-ordination to keep himself upright. I have an *embarrassing* confession... but I think I kind of was waiting for Malakai to be the first 'super-human' boy with Down syndrome, never to fall behind. OkOk!! I know!! What silly thoughts... but as I was waiting for his challenges to arise, the thought did cross my mind... Now it's happening. And I'm breathing. Down syndrome snuck up on me at the birth of my son, and for that I am truly grateful! I never had the opportunity to learn all the negativity surrounding such a diagnosis, and so I didn't have any limitations in my mind as to what Malakai would be able to do at birth and as a newborn. We were so blessed that he had no feeding issues or health issues, and I thank God every day for that! I have since learned alot, through reading and through other people's lives (on these blogs) that has prepared me for the challenges that Malakai might face. Now it's happening. And I'm breathing. I am breathing through the fear that I may not be able to give him everything he needs. I am breathing through the unknown... the questions... the what if's... I am breathing calmness into my life, because a freaked-out mind is not a calm mind. And through the breathing I realise with absolute clarity that he is my boy, he will always be my boy - perfect, amazing, strong and capable. We are learning as the days pass what Malakai's challenges will be and facing them with love and understanding. Love - because the challenge is part of who he is and so the challenge deserves love! Understanding - because the challenge is part of who he is and to help him we need to understand the challenge and what it means to him. I am looking at his challenges as not 'things to overcome', but things to love and accept and work with to get to where we want to go.
A fellow blogger wrote a piece that really helped me to "breath"...
*...I was told this morning by the supervisor of Gabe's preschool... "He always amazes us." That is what our lives with Down syndrome is all about, isn't it? The contrast of the not knowing and the knowing of people with Down syndrome. Ignorance and education. Disregard and acceptance. Turning away and turning towards. Contrast until someday it all just doesn't matter and what I see, and what I believe in, and have experienced with Gabriel, is enough. Because he is enough as who he is. He is amazing.*
Well! What a week and half! My life has certainly become like a train station where the only stop is 'mommyville'. LOL!
Kai started solids this week - a little rice cereal in the morning between feeds. At first he kind of 'pooped' most of it out with his tongue, but there were no tears, no funny faces and no throwing up! 100 points for Mommy, Daddy and Malakai! I took pictures and will post them soon!
Then... it's that time of year when the budget looks just so sad! Because my husband is in sales (and December is NEVER a good month), our January budget always knocks me sideways and I inevitably end up teary and wondering how we will ever make it and still have money left for savings and our future... And with Kai's arrival, we have had decided to go on a better Medical Aid option so that all his therapies and specialist visits are covered, but this is eating up any extra income we may have had. So! After tears and feeling very sorry for myself *sniff sniff*, my dear husband managed to calm me down and we looked at our plan for 2009 and with some creative manoeuvring we will be able to continue saving for our future and eat! Yay! But my husband did end the conversation with '...and you want another baby???' OkOk! So growing our family will have to wait a little while longer...
And then! Life as I knew it is officially over! I used to get home from work, eat, wash dishes, play with the dogs and then park on the couch and relax (as was my due... I believed!). Since Kai's arrival, life has a whole new meaning! I get home from a full day's work and an hour in the traffic to feeding, bathing, bonding and putting Kai to sleep. Now don't get me wrong - my little man sleeps from 7 through to 5:30, so we are Blessed (with a capital B!). So I don't mind if the first time I can sit down with a cuppa is 7:30 - that's cool! But that's if everything else is running smoothly... Last night I was stuck in bad traffic and got home 30 minutes late. While I was feeding Kai I had to make a list of groceries that my Dear Husband had to go and buy. My husband ran off to the shops and when I was finished feeding and bathing Kai I had to feed our poor (neglected) dogs. Only to see that my oldest (a fat little creamy-coloured dog that's 13 years old) had fresh blood all over her neck and chest! WTF??? I thought one of other dogs had bitten her. So, my sister-in-law graciously offered to take Kai while I got my dog to the Vet, where he diagnosed a severe case of 'hot skin' (your guess is as good as mine!!) which basically meant that she is scratching herself until she bleeds... So R580 later I'm home with some doggy cream and antibiotics, tying socks on her little feet to stop her scratching. Dear Husband arrives with the groceries and runs off to play squash, while I have to unpack everything, feed the dogs and feed myself! At least Kai was fast asleep, thanks to my sister-in-law. Whew! So! If everything goes well, life is pretty good... But how often does the weather wreak havoc with the traffic, dogs get sick, groceries need to be bought... Life Happens and my little Kai needs me too - so things get hectic sometimes!
I'm at work as I write this (shhh), relishing in the only 'me time' available at the moment - mentally picturing everything that needs to get done tonight... follow up appointment at the vet, my tax return is pending, Kai's therapy visit and the list goes on!!
This last weekend was the first in many months that I didn't have a photo shoot to go to... Although I want business to pick up, I was also basking in the fact that I didn't have to go somewhere or do anything that I didn't absolutely want to do! (Not that I don't enjoy taking photos, but... it is work...).
So! We went to watch horse show jumping (wow those creatures are HUGE!) and then *my absolute best*... then we spent the afternoon at the Irene Country Lodge. We spread our blanket on the grass under an ancient Oak Tree with a view of the lake and the corn fields and the birds and the grass and the beautiful sky... We just lay there and relaxed... you slept next to me on and off and I was just in heaven! Good friends, beautiful day, stunning outdoors - what more could I have asked for??? Sunday was also just about lounging around the house, watching corny movies on the Hallmark Channel (yes... I admit to watching very soppy, very 'happy-ending motivated' films when I get the chance), staying in my PJ's ALL DAY LONG!
The simple things - not having to rush out the door (which I expect Monday to Friday, but mostly have to do on Saturdays and Sundays as well.), enjoying a WHOLE DAY with you...
The simple things - those are the things that stuck with me from this weekend. Nothing exciting, nothing dramatic... just simple and abundant days filled with you!
Today I read something on a fellow blogger's page (www.missmagic.blogspot.com) that struck such a cord with me. It is about being confident enough, comfortable enough in your own skin to be able to fail.
"Fail mommy? Why would I want to fail?" I hear you ask.
Well... it's not so much about wanting to fail and more about not being scared to try.
Not being scared to be you, even if others don't understand you. Not being scared to fall down, because you will just get up again. Not being scared to try again when the first time wasn't a success. Not being scared to say 'I don't know' so that you can learn more. Not being scared to not be the best, and enjoying it anyway!
This is more than I have been able to do in my life so far. You will be my teacher, beautiful boy. I hope that you will be the one to show me how to not be afraid of being me, of falling, of not knowing, of failing... because to fail is to learn and become and grow.
Thank you Carol for your words (below):
My job is to help her develop the self confidence to fail, as well as to succeed -- and maybe, just maybe, the world will catch up with her!
This time, I'll be sailing No more bailing boats for me I'll be out here on the sea Just my confidence and me
And I'll be awful sometimes Weakened to my knees But I'll learn to get by On the little victories
This time, I'll have no fear I'll be standing strong and tall Turn my back towards them all
And I'll be awful sometimes Weakened to my knees I'll learn to get by And I'll learn to get by On the little victories And if the world decides to catch up with me It's a little victory.
Keaton: 1 year old!! Born a whole month early, but so big & strong. Always smiling and happy and full of life!
Deqlan: +/- 2,5 years old. A brave survivor of Neuroblastoma and on the Autism Spectrum. Busy busy busy!! Always full of energy and life!
Caden: Born 3 months early, weighing only 1.02kgs. What a little fighter! What a little personality! A 'grabber' of hearts!
You attended your very first birthday party on Saturday! Keaton (and his mom Megan) are such great friends of ours and we are so happy to have been part of his 1st birthday! Happy birthday Keaton!
There was lots of colour, sounds, people and babies around - you had a blast I am sure!
I am so happy that you are going to grow up around three little boys that are each so unique, that have each had their own journey in their short little lives! Having these little boys in our lives shows us that we are all special and unique and we can all celebrate each other for who we are!
These are just some pictures from the day!
I love you my boy - you are so gorgeous and I couldn't be a prouder mom!
I am not a morning person. I have never been a morning person. And... I don't think I will ever become a morning person. Having said that - all mothers out there will know that - TOUGH LUCK - you better start doing morings with some measure of accuracy! So... I tolerate mornings now. As long as I have my cup of coffee as soon as my eyes open, I feel I can tackle what's thrown at me. I may be (well I definitely am) abit slow... taking 5 minutes or more to change Kai's bum... but it does get done! So, I wanted to set the scene for this morning... I woke up at 5:30am and while the house was still quiet and cool I toddled to the kitchen to get my coffee fix... oh great... two dog poos, a dog wee and a gigantic tick are having a party on my kitchen floor. I flinch ever so slightly. So I put the kettle on and set about cleaning everything up. Then I go to fetch Kai to put him in the lounge and notice that he has an explosive nappy... I flinch ever so slightly again... So I set about changing (and washing) his bum! All this before my coffee fix, and all (I dare say) done with speed and acuracy! So! There is hope for me! I am slowly realising that I can take on alot more in the smaller hours of the day - even if I haven't had my coffee fix. I don't enjoy it, but I can do it! Motherhood has taught me to Show Up and do the work. I realised that before Kai I did things in my own time and only had myself to answer to - so naturally I was selfish and went about avoiding things I didn't like and gravitating towards those things that I did. Now, I need to do things that I don't neccessarily like, but I do them with love and the understanding that this is motherhood and I am Showing Up in the best way I know how!
Now I just need to work on my (attention-deprived...since Kai's arrival - shame) dogs and the scary tick!
“At a loss for words”…is not a way that I normally describe myself! And for the past few days, as the responses to my last post poured in, I have been just that – without words!
Thank you to everyone who responded to a post that I was a little scared to put out there. I can’t say why I was scared, but I think I felt exposed and vulnerable, just laying my feelings bare. Well! I didn’t realize that my words and my feelings would be so meaningful to so many fellow bloggers out there! Thank you for validating me.
The world of bloggers is really an amazing thing! I love to read blogs, and every night you will find me behind my laptop at some point, going through the blogs that I love so dearly! As a mother to a baby with Ds, I cannot say how these blogs have changed my life – I mean that so sincerely. Many times, the experiences I read about bring me joy, amazement, hope, tears, laughter and most important – a feeling that I am not alone and never will be alone in my experiences with my beautiful boy!
To those of you out there that are living life loving someone who has Ds – I feel connected and part of a -very cool- secret club To those of you out there who support and care for our family simply because you love us, thank you! Through us you get to catch a glimpse of ‘holland’, and see that it is a beautiful place to be.
Now that this post has dragged on and on…LOL! I really wanted to just say thank you for the support and love – we love feeling the love!
I started this blog primarily as a place to write love letters to my son, so that one day he might be able to glimpse at this time in his life through my words. And although I am going to still do that, there are times when I feel I want to say things that are not aimed at my little one, but just general thoughts and feelings. So, I am going to start using this blog as a place for me to share my own thoughts and feelings as well!
Having said that, I would choose a very controversial subject to start with!! LOL! It's just that I came across a statistic a while back that really bugged me... 91% of all people faced with a diagnosis of Down syndrome through amniocentesis will choose to abort the baby.
I have always considered myself to be Pro-Choice - y'know... it's your body, your choice. But my support of Pro-Choice was always been based on abortion due to the mother's circumstances... poverty, rape, age etc. I never really thought about it in terms of aborting for 'medical reasons' (this is the tidy, clean-conscience term used for aborting due to a scary diagnosis). And this has weighed heavily on my mind the past week or so... I look at my son, my beautiful, amazing son and I think that 91% of the people around me would have chosen to kill him. That's blunt, but its the bottom line. I look at my son, into his beautiful eyes... I look at him across the room and now he smiles back at me (bless him!)... I watch him as he's starting to master the idea of being on his tummy... as he sleeps at night, snoring softly... and then I think - 91% of people don't think he has the right to life, to love, to freedom and the persuit of happiness. And even more hurtful for me as a mother is that when he gets older, he may realise that fact as well...
At a dinner the other night, a friend of mine who has another friend who choose to abort their baby with Down syndrome told me that they live with a terrible, heavy guilt everyday of their lives... I felt compassion for them, of course! To choose to kill your child cannot be easy to do or to live with. I don't for one second think it is a choice taken lightly or without immense pain. But she said they were plagued by thoughts of 'what if their test results were wrong or mixed up and their unborn baby was actually ok'.Oh. They are not sad because they decided a life with Down syndrome IS worth living... but just in case their unborn child was in fact 'perfect' and not 'broken' as they had been told. They cry and mourn their 'perfect' child, while the reality of their little unborn child with Down syndrome is negated.
And seeing that this post is taking a very serious turn (this subject can never be light I suppose)... I wanted to ask 91% of people out there... If your doctor had a crystal ball and told you that at age 4 your child would run infront of a car and become severely handicapped as a result - would you abort now? What if your doctor could tell you that your child would nearly drown and become handicapped because of that - would you abort? Would the idea of perfection that the world has sold us, and that we have swallowed up, be that important to you that you would be willing to kill for it?
A life or death issue becomes a question of perfection... whatever that may be. All at once I am not sure that anything is perfect and then I am sure that everything is perfectly in order. I look at my son and I love him, I love him... I ache with love for him... for a child that 91% of people would choose to kill... my child...
Your daddy took you today for your first therapy visit of the year, and because our therapists have changed, they only wanted to do an evaluation.
Well! You little charmer... The ladies adored you! Your daddy tells me that you charmed them with your contagious 'eat me up' smile, you rolled all over the place, sat like a mini-chubby tripod and basically behaved like the Miracle you are!
They agreed that you were well within 'typical' milestones and that you are doing so very well! Excellent my angel! They showed us some ideas for more excercises and we will now be going only to OT every second week.
I remember clearly when I was pregnant with you many people asked me if I was going to be 'demand feeding' or working with a 'routine', what my ideas were and what my preparations were. I remember saying that I had no expectations, I had no idea what motherhood entailed and I would just wait for you to arrive and then let you set the scene. I am now so pleased that I did that! Not only did you arrive with a little something extra, but I continued to have no expectations about your Down syndrome. I think that this has stopped me from creating 'imaginary limitations' for you my angel - you are you. I cannot say enough... I cannot express with words how deeply I believe that a blood-test cannot tell me who you are and what you are capable of. The idea of it is just as foreign to me as ice is to the dessert... I just know that you are my son, you are a wise soul, you chose to come to this world and be part of my life and I of yours! You have a path to walk that you are completely capable of (with my love, support and addoration of course!).
Never, ever let a label limit you. Never, ever believe that you are anything less than beautiful and wise. Always and forever be yourself, do your best, breathe deeply and let the small things pass. You are wise, you are perfect, you are you!
Happy 2009 my angel! I am always excited at the prospect of a new year, a canvas that is clear and ready for us to fill with colour and laughter and milestones and joy!
We had a really great holiday in Durban - your first road trip! You were really excellent in the car for 6 hours, but we did travel at night so that you could sleep the whole way. We got to visit your Granny Rowe (Daddy's mom) and you met your cousins Joshua and Amber! We stayed with Granny Dye and we also visited Megan, Conrad and Keaton in Scottborough. You sat on the beach for the first time and you absolutely loved the sea sand! You were full of it by the time we had to leave!
Otherwise, you have done so many new things over the past two weeks - you are now sitting (like a tripod) for short times, you are rolling from your back onto your tummy and you are really enjoying playing with your toys now! Also, you spent your first night in your room last night. Needless to say, you took it in your stride without any problems! I can't believe how you are growing and changing!
My angel, I know that the next year will bring many more exciting times for us. I look so forward to every day with you! I know that you are going to do well and mommy and daddy will be by your side every step of the way!
I am also excited because I have found a place called The Institutes in the USA that has had great success in working with babies with Down syndrome - not only do the children who go on this programe keep up with their peers, but they actually read, write, talk and do math above average! Mommy is excited and is going to learn more about this programme and see if we can do it here for you! This just confirms for me that we must never 'downsize' our dreams for you - rather we must dream big and walk tall! In a world where many other babies with Down syndrome are even denied the right to live, we will never leave you behind my angel! We will fight for your right to be here, to be healthy, to be loved and to be accepted!