Okay, so I often hear the phrase "I hate Angelman Syndrome"...I have mixed emotions about how I feel when I hear or read this statement. Angelman Syndrome is not who my child is but it is a big part. He is this handsome, stubborn, strong-willed, happy, quirky, silly little boy. He can be a bit rebellious like any preteen and I don't believe any of this comes from AS...this is who he would have been with or without this disorder. I don't like many of the things that AS does to him or prevents him from doing. It breaks my heart when he knows what he wants and he can't tell us. It makes me sad when he so obviously wants to play with other boys his age, but he just doesn't know how. I can't stand seeing him in pain or discomfort but not being able to figure out what is causing it. I couldn't help but to silently curse AS all the times when we have come so close to losing him or when we sat praying by his bed through two comas. I don't say that I hate AS but I do say that I strongly dislike certain aspects of it. It is not always fun and giggles, it is a serious disorder that causes our children and parents a lot of heartache at times...sometimes we even lose children to AS. Despite the heartaches, we do still feel blessed. Because of Angelman Syndrome, Brady has taught us the meaning of life. He has taught us to cherish and take advantage of each day together...not to depend on having another chance tomorrow, next week, or next month. Not only has he touched our lives in a way that I never dreamed possible, he touches the lives of everyone that he meets. Just seeing him enter a room and light it up with that silly little giggle, his bright smile, and blowing kisses, is a reminder of God's plan for him. We have also had the opportunity to make connections with people who we would have never known existed before. Some of my best friends are AS parents. Many of us share different beliefs and we come from different geographical locations. We may have different backgrounds, some may be younger and some are older, we may even have different religious beliefs, some are wealthy and some not so much, but we are connected and forever bonded because of our children. We respect each other's differences and support each other no matter what...this wouldn't have happened without AS. I do believe that everything happens for a reason and everyday I am reminded of why AS came into our lives. We will continue to learn and grow, even when it is cured. People often ask me how I do it, how I stay so positive with all that goes on in our lives because of AS...the truth is, I'm just so thankful to have Brady here making messes, yelling/demanding mashed potatoes, throwing rolls of toilet paper in my bath water, and even putting my phones in the sink. Life would be so much worse and maybe even sometimes boring if he were not in it. So I can take anything this kiddo throws at me, as long as we can go through it together as a complete family. I laugh when others would cry because laughter is the best medicine :) Last night I lay in bed thinking about all that we've been through with this sweet boy. I thought about all of the naughty things that he does and how I couldn't imagine life any other way. When he spends an hour visiting maw maw, the house is awkwardly quiet. When he's in a coma or having non stop seizures, we long to have him home getting into everything...chaos is our normal and we crave it. Do we want a cure for AS...YES! We don't want a cure because of our own selfish reasons because we think that this kid is simply awesome. We do want to make his life a bit easier with less pain and suffering and less frustration. Our reasons may be somewhat different than those of a typical parent but in the end don't we all just want to enhance and improve our children's lives? Don't we want to take their pain away and make things just a bit easier for them? So back to my original point, I'm not sure if I actually hate AS but I do know that I strongly dislike certain aspects of it. I think that's it's totally ok for anyone to feel how they feel about it. I don't fault anyone who says they hate it. We AS parents all go through many of the same challenges but at the same time some have been at it a lot longer and are a bit more tired. Some have faced dangerous, potentially life-threatening situations and some haven't. Some have spent many many days and nights in hospitals and some haven't. So while our situations are similar, they are unique, and we can't fault anyone for their feelings or thoughts Anyway have a blessed night and don't forget to pray for all of those special needs families out there ;). I love you Craig, Peyton, and Brady...you are my rock. |
