Down syndrome.
That term, which after almost 7 months of research, reading, talking, and getting to 'understand', is still so unclear to me. No two children are the same, even those children that have an extra 21st chromosome. It seems obvious now - but when I began this journey I honestly thought there would be a road-map or at least a few 'absolutes'! But Malakai's development will be completely his own - unique and special.
So why did I label this post 'gratitude'? Well, because I am just that! I am grateful for my son - completely. Would I wish him any different? Even just a tiny bit? No. Not today. Maybe tomorrow I will feel different, but today I can sit here and my heart is bursting and aching with gratitude for my son. For his softness, for his gentle nature, for the way he laughs as though he's choking on a sneeze, for the way he's learning about his world in his way.
This weekend I met friend's little girl for the first time. She was born a week before Malakai. She is gorgeous - really! And when I took her in my arms my heart constricted ever so slightly... a little hurt... I had to step back into myself and look at this little feeling, bewildered. But I thought I had dealt with this? I thought I was ok?
What I realised was that sometimes I will be a little sad, a little lost. But all I have to do is look at my son. Look at his love, his openness, his joy, his life. He is perfect, he is beautiful, he fills me with so much love and pride that I can burst.
Can you be grateful for Down syndrome? Yes you can. Yes I can. How? Why? Because it is a gift. It is a road that will take you to places you never thought of, to meet people you would never have met, to learn lessons that you would never have been blessed to learn. A little more compassion. A lot more understanding and respect for that part of society that is deemed 'less than'. For never underestimating the human spirit, the fight to live and be loved.
Thank you. I am thanking you for Malakai's beautiful almond shaped eyes. For Malakai's little hands that are creased in half. For the little fold on his right ear. For his little feet, big toe seperated from the others by his 'sandal gap'. For that extra bit of skin on the back of his neck that is so kissable! For these things are the outward physical signs of his extra chromosome, but together they make up more than that sum of their parts.
Down syndrome - those two words have changed my life... for the better... without a doubt.
19 comments:
My thoughts and my heart...finally put into words. Beautifully spoken. Beautiful boy.
I love, love, love the pictures of you two together! You will treasure those forever! And I agree that Down syndrome is a gift!
Such a lovely post! Your son is beautiful!!
Very well said! Thank you for such a beautiful post : ) Malakai is just gorgeous.
My friend, were do I start? Firstly the photos are by far the most beautiful, incredible, gorgeous photos I have EVER seen!!! The love and adoration in your face is so obvious! And little Malakai played along perfectly! Oh my word he is just sooooooo beautiful!
Although "I" cannot understand some of your feelings, believe me when I say that in my eyes Malakai is no different to other children, not even my own, he is an old soul, a wise soul, a very wise soul who has taught me many things in his short 6 months already! He is gorgeous, he is beautiful, he is PERFECT! And those eyes, so blue, so kind, so loving....
His Smile, so genuine, so happy, so damn cute!
Please always know that I am always here for you, someone to talk to, someone to cry with, someone to laugh with, someone to shout at, anything at any time... I dont promise to always have the right words for you, but I do promise that even if I dont know the anwser and dont utter a word, you know my heart is speaking to you in song!
Big hugs to your precious little man and when I come to your house again I want to these three beautiful pictures up on the wall for the world to see how beautiful and how treasured your little Malakai is!
Megs
Those are amazing pics!!! If you didnt have those thoughts you wouldnt be normal but Malakai is gorgeous and you are so lucky to have such a gorgeous and healthy baby : )
Beautiful post! Malakai is so adorable.
Hi Loren,
What beautiful words!! Stunning stunning photos.. Your love for Malakai shows..
You should consider putting a book together.. You definately have a talent for writing.. I would buy the book!!
Have a great day!
Love
Claire
I am very grateful for Down syndrome. I may not have my daughter, and I may not have had Baby J had there been no Down syndrome. Grateful doesn't begin to describe it!
i understand and know that "little constriction of the heart..." AND i adore and give thanks for livia every day of my life. malakai shines.
Your photos are beautiful, as are your words. In my experience, there are moments when Down syndrome seems bigger than my son, but those moments happen only because I look away from him. Does this make sense? Like you, I see such beauty in my child, even if I can't see all of him, all the time. I truly believe that your beautiful Malakai Stow was meant to be your son. You're so graceful.
That was beautifully written. I agree completely! And the pictures of the two of you are amazing!
great pictures and a wonderful post. I think that there will always be a pang of "what it" and "why" but our love for our children far outweighs that bittersweet doubt. Keep doing what you're doing - bringing into the world, a whole, loved, amazing little boy.
what gorgeous photos Loren, what gorgeous words! Kai you are to gorgeous!
Hellooo! it's great to follow malakai's life on your blog. We often come to visit it to hear from you. And we are glad! Glad to see that your little malakai is growing well! He's so beautiful, and you too by the way with this new haircut!! Hope that our plane-spoon and mampara plate are useful!
How is your house now?(pictures pictures!)
We hope the three of you are fine!
Love and hugs.
audrey and flo
Cheers to that extra chromosome! I still get weepy at baby showers because it brings up a lot of the raw emotions I had after my prenatal diagnosis. But it's all good as soon as I get my boy in my arms. You have every right to be grateful - we hold the lucky ticket after all!
By the way, I nominated you for an award on my blog.
You have a beautiful little boy. Our little boy is more genetically us than he is different. He may have the label of Down syndrome, but around here and to friends, he is thought of as just another Hill baby.
Oh,Loren,that what a beautiful post.The pictures are terrific!
Beautiful post and beautiful photos of a beautiful boy.
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