To MWS siblings – with love

Sometimes the innocence, simplicity and pureness of life with a loved one who has special needs catches you off guard.

I can be busy doing something that involves all three of my kids when that look, a certain gesture or the sound of a soft voice grabs my attention. I can feel it before I see it and when I look up I want to take in and be a part of it, but discretely, in a way not to interrupt it. What I see is Kevin looking at Sarah or Scott with such pure love and adoration. I also see Sarah and Scott reaching out to let Kevin know that they are by his side. From moments like these, I am comforted to know that the bonds are deep and lifelong.

When Kevin looks at Sarah and Scott with his inside out smile, a laugh and usually a pretty tight hold, he is letting know them know that they are his people. I watch Sarah links arms with Kevin or tussle his hair. Scott will put a protective hand on Kevin’s shoulder. Kevin knows that he can count on them both.

These days, Mowat-Wilson families share many family memories on Facebook. One day recently when I was scrolling through, I came across a post that reminded me of my kids. The sister looked at her brother with such wide loving eyes and the brother’s hand over hers was recognizable to any MWS family. The similarity between this photo and many of ours made me wonder about sibling relations in other MWS families.

This Valentine’s Day, in celebration of siblings in our MWS families, I wanted siblings to know that the roles they play in their brother or sister’s lives do not go unnoticed. To honour it, please share this post with friends and family, and invite them to visit our MWS Foundation page to help raise funds and awareness about Mowat Wilson Syndrome.

From a young age, many parents of our families wonder about the kind of relationships their children will develop, even more so for MWS siblings because the sacrifices aren’t small. Yet, moments like we see here with Jonathan and Abby build the foundation for what is to come. You may not know that many MWS kids are very particular about being touched, so this head-to-head contact shows a trust and love that goes beyonds words.

12696597_10208052106436893_856221102_o

Meet Jethro and Gabriel. This exchange makes you want to laugh out loud. The intimacy of a brother holding onto your ear, and the other brother letting it happen, shows a familiarity and a willingness to make each other happy. Kevin likes to touch Vikas’s ear, so perhaps this gesture is the equivalent of blowing a kiss for our MWS kids.

1609861_219739944876634_1834647802_n[1] (1)

Fabian’s love for his big sister Laura means everything. Hanging on tightly to squeeze all he can from the moment, Fabien will push himself to do difficult tasks to please his sister. Laura, with her gentle, kind, and compassionate demeanor, helps guide and care for her brother. It means the world to him.

Ausflug  mit Fabi 020

Romane, like many of our MWS children, took time to learn basic tasks: how to eat, walk and hold a pen. Her big sister is always her favourite teacher. Along the way, Romane has taught her big sister ( and her whole family) about unconditional love and how it can affect the person you become.

image1

For Kevin, most of his happiest skipping moments involve being in the centre of some goofy act and having everyone in the same place at the same time. More precious as everyone gets older, Kevin somehow knows he has to hang on to the moment tightly, take it all in and capture it so he can enjoy it then and later by himself or with friends.

Sharmas Green Park London June 2015

Thanks to the families who shared their photographs and stories. I’m pretty sure we made people smile today. Happy Valentine’s Day!