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. Ok Ok!! 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.*
Your words helped me to breath - thank you Lianna (www.mylifewithgabriel.blogspot.com).
Loren
Thank You Lord 5 years NED 16 January 2013
11 years ago
6 comments:
Hugs! Malakai is such a lucky little boy to have you for a mom!
Just keep breathing my friend. All is always ok.
Love
Elriza
(mom to a boy who only sat at 10 months and who still isn't crawling, but it's always ok!)
I felt the same way about Morgan. I remember when they brought the Down syndrome pamphlet to me and I thought, "well Morgan won't look like this...she will still have big eyes just like all my other kids and won't have the typical features of Ds" Well she does have big beautiful eyes but they are a different shape than my other 5 children. I also thought that I would have time to work with her so much that she would be so smart and have no I.Q. difference than the typical child. And I must admit that she is seriously one smart cookie but she struggles with social behavior and is obviously socially immature compared to her peers. But all of that doesn't matter anymore. It does take time but with that time you realize your love is unconditional for your child--and it doesn't matter if your child becomes 'high functioning' or 'low functioning'. Their life has indefinite value and worth! This journey takes lots of baby steps--that I know! Hugs!
Hi Loren.
You have such a way with words. You continue to blow me away with your deepest, most honest thoughts, and at times, bring me to tears! You are an amazing woman, and an amazing Mom too. Please don't misunderstand, but you know, Malakai will reach his goals in his own time. My little boy, Liam, will be 8 months in February, and is still not sitting on his own. I was worried about him, but then I thought, no...he will do it when he is ready to. All children develope differently. If I'm honest, I was worried that Liam wasn't keeping up with Malakia. Malakai can roll over and push himself up on his arms...Liam is only just starting to do that now. Your little Malakai is absolutely perfect!!! (As is my Liam...of course...)
Take care xxx
Sam Mac Donald (cousin and friend to Mark and Samm)
Thank you, for not only taking me back to a more tender time and "me" when Gabriel was Malakai's age, but for allowing my words to help you today.
I remember distinctly when a neighbour remarked that he could now see that Gabe has Down syndrome. It was the summer after his birth, so he was probably nearing five months. Up until that time, it seemed that Gabe didn't have the facial characteristics that accompany T21. Some people we met didn't know he had Ds.
Anyway, that remark was the beginning of a spiral of emotion for me. I thought, too, that my baby boy would be the super-human boy with Ds. I really understand what you're saying.
I still grapple with this idea. For instance, why am I so motivated to teach Gabriel to read at such an early age? I wish I could say that my motivation was entirely un-selfish, but I can't.
I think there are some days when we have to admit that we don't want to see the characteristics of Ds staring us in the face. Days of holding our breath, sort of speak.
Malakai is his own little person. Just like Gabriel, he will accomplish many goals with his peers, and sometimes, he'll be a few steps behind.
Mostly, you'll be so amazed by your beautiful son that your breath will quicken with pride. I promise you this. And sometimes, you'll hold it, waiting on his next move.
There are many exciting times ahead for you and Malakai, and I can't wait to read about them all!♥
I completely relate to this post. Breathe deeply knowing you are not alone on this journey and we are all here to support each other as we raise our beautiful children.
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