Our Story with AS

 

madden singleMy son, Madden, was diagnosed with Angelman syndrome before he was a year old, February 2014.  As I’m sure you could imagine, it was a very tough day and attempting to put it into words wouldn’t give it the gravity it deserves. To find out that our son will have “special needs” his entire life was a lot for new parents to comprehend. It’s the fear of every parent but after grieving, for our perceived loss not his, we knew we were lucky to have discovered his rare condition early to capitalize on early intervention. When telling the story of our child having specials needs, it usually starts off quite sad and tragic but I assure you Madden is blessed in many ways. He’s limited in function but rewarded with grace, happiness, and a loving family that will surround him with care and protection.

Madden and DeclanSAMSUNG CSC

The “Gift of Helplessness” is something most people experience briefly early in life with a newborn or much later in life caring for an ailing parent. It isn’t until those challenging times do we grow and find new depths of our love, connection and provided the rare opportunity to serve someone that gave us everything physically and emotionally by carving out a new space in the heart that didn’t exist before they entered or left this world. I had no idea the effect this Gift has on the way we look at life. I only know how it effects how we live it…with more purpose, more direction and less time only thinking about one’s own well-being. The impact Madden will have on our family is endless.  He teaches us something every day and he makes anyone that knows him a better person.

I often think about what wonderful gifts Madden will give his twin brother Declan and younger brother Conrad. Not birthday presents or Christmas presents but gifts that make them richer in life. There’s no question they will be better men with their brother Madden by their side and experiencing the “Gift of Helplessness” early and living everyday providing unconditional love to their brother that he returns without words, because there really aren’t any needed.

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7 thoughts on “Our Story with AS

  1. Your story is amazing and family is absolutely gorgeous. Madden is such a blessing and is one adorable angel. My nephew, Riley is an angel too and likewise, has opened up our family’s eyes to a whole new world of love, compassion and appreciation. So proud of your endeavor to raise awareness for the ASF community. Good luck and God Bless.

    • Jessica,
      Thank you very much for reaching out. It’s means a lot. When you put these “blogs” together(which I never thought I would do) and start an awareness campaign like this you don’t really know how many people you’re reaching. It’s great to hear back from people like you. If you can….come back and post a picture of Riley. I love seeing my Son Madden everywhere on the site but it would be great to see other kids/adults as well. After-all this is for the entire AS community. #summit4angelman

      Thanks again,
      Kyle & Madden

  2. Kyle–Just found your blog tonight. We got the official diagnosis this week that my 21 month old son, Andrew, has AS. Your post was an encouragement I needed tonight.

    • Hey Brent,
      Thanks for sending me a note. I remember that day. That was a tough day….but there are so many great ones in front of you and you never have to go through that one again. You know now why Andrew seemed a little different from other children and that’s empowering for you and your family. Now you get to focus on life and watching Andrew do things that you probably didn’t think were possible the day you found out.

      Please update me on Andrew’s progress. He is almost the same age as my son Madden/26 months.
      Kyle

  3. Hello! I just found your blog while searching the Internet for the last three days trying to find out as much about Angelman Sundrome as I can. Our daughter, Sophia (3 1/2), was just diagnosed 3 days ago as having AS. We have been searching for answers since she was around 1 year of age, so it’s nice to put a name to her symptoms. I look forward to reading more of your posts. As difficult as it is, it’s nice to hear the stories of others. It lets you know you’re not alone!

    • Hi. Madden is 2.5 and I remember that weekend vividly. We found out, even though we knew for months, on a Friday and I spent what seemed like days searching to the end of the internet trying to figure out what type of life my son and my family would have. I can tell you fairly confidently, that everyone’s journey is so different. It certainly has its up and downs but it’s very easy to focus on the challenges that come with Angelman Syndrome, but the only advice I can give you being newbie to the community as well and having a small child with AS is….focus on the positive when you can. There is plenty of time to focus on the “challenges” but don’t keep that from letting you see the amazing things that come along with AS. I promise you…there are many. Our neuro who sees most of the AS kids in the Twin Cities reminded us of all the great things. He said he has seen it time and time again but families are more grounded, more caring and siblings and relatives grow up with focusing on others instead of themselves. He reminded us how rare that is for typical children and how positive that impact can be on everyone that knows Madden. We can talk about Seizures all day long but he made sure to discuss how Madden will impact our lives in more ways than what we might see today…I’m looking forward to that.

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