Alive
Note from the Author: I used a direct quote from a private Facebook group. I believe in the trust and privacy of these private groups. After wrestling with whether to use this quote directly, I came to the decision that in this circumstance, the quote needed to be used. My reasoning is because this individual influences our Angelman community leadership. If this was just a parent, I would not be using any quote. I believe our private Facebook groups should be a safe haven for parents and family members to say whatever they are feeling. As always, I have not directly attributed this quote to any person and I am not naming any organization.
The individual who made this statement, has since apologized. I believe we are all imperfect, and I for one accept this apology. The individual holds an influential position in this certain organization, so I do believe this individual needs to be held accountable. I tried to be as fair and compassionate as possible, while calling for accountability within our leadership.
The organization in question, has since stated they will be conducting a review internally. I believe the conclusion of this investigation should be made public to build trust within the community.
This is not meant to shame any one person or organization. It is a call for our leadership to be held to account and for all of us to move forward as one. I hope this post isn’t divisive. I hope this post continues the conversations that are already taking place.
My heart has been heavy for a few days. My mind has been racing on whether I should even broach this topic. I didn’t know if I should address the comment that has divided some in the Angelman Syndrome community. On our drive across state, I decided that I needed to make my voice heard. I needed to share my daughter’s voice. Even though I have only been a part of the Angelman community since December of 2021, I have lived with a child with Angelman Syndrome for over two years. It was just that some of that time, we didn’t know Maddie had AS.
Our Angelman community is a perfectly imperfect community. We have families from a wide range of backgrounds and cultures. We run the political spectrum, we come from different cultures, we come from different countries, and we have different styles of parenting. However, we are all bonded by this rare syndrome. These diverse backgrounds are what make our community so strong. No matter who you are, there’s a family to help. No matter who you are, our family is there to help.
This spirit of love and friendship, is what made this shocking comment, so hurtful. Before I go any further, I do not think this person should be personally attacked. I do not know what is going on behind the scenes in this person’s life. I do not know if this person is in a period of grief. I do not know the life circumstances of this person. This person also has made a statement of regret. If this person ever reached out to me, our family would be there to help their family. We are all in this together.
However, the comment needs to be addressed. The reason why the comment needs to be addressed is because this person holds a prominent role in the Angelman Syndrome community. This person helps to shape the policies and direction that a major organization goes in. This person helps to shape the narrative and has a direct impact on the treatment of our Angelman children. That is why I am addressing this statement.
The comment was made in regards to another poster. I have omitted the first two sentences which in no way change what was said. The patients the poster is referring to have a devastating illness. The statement made is as follows, “It is very difficult, and I see my patients in agony every day and have to help them make very difficult decisions. My journey is not as difficult as others’ is, trust me. My daughter communicates well via device, has great motor skills, comprehends very well, is potty trained etc., and has a 24/7 caretaker. That to me still qualifies as devastating. If someone made me choose between my child having a terminal cancer and angelman’s (which to me is akin to having a dead child who is there every day to remind you they’re dead), I would choose the former.”
This is a direct statement from someone who is supposed to be driving the Angelman community forward. To be clear, my daughter is very much ALIVE. To be clear, you are entitled to your opinion, but if you view my child as dead, you should not be directly or indirectly involved in medical innovation or research regarding Angelman Syndrome. That is not only for my daughter’s well being but for the well being of all people with Angelman Syndrome.
I accept this person’s apology. I do not know why this statement was made. I do not know your frame of mind at the time. I do know however that you purposefully stated that you would rather a child have a terminal illness, than Angelman Syndrome. What I cannot accept is that this person is still allowed to shape this community in a leadership capacity. This person’s time should come to an end on that level of involvement.
Is Angelman Syndrome devastating, yes I can say that it is. It changes a whole family dynamic. From my experience, it reshapes your world into something new, different, and beautiful. I am a better man because of my daughter. I am a better father because of my daughter. I am a better husband because of my daughter.
There are scary and frustrating things that come with this diagnosis. There are unknown difficulties that we will face down the road. However my daughter reminds me everyday that she is very much alive. My daughter reminds me everyday how much I am loved and how much I am needed. My daughter reminds me every day that this world isn’t dark and twisted, this world is full of light and I see that everyday in my daughter’s eyes. I see beauty in her smile. I feel her love in the hugs and the slobbery kisses she leaves on my cheek. I feel so proud every time she effectively communicates. I feel pride when I see my daughter accomplish something new. I feel complete when my family is together.
If I had to choose between a terminal illness and Angelman Syndrome I would choose Angelman Syndrome every single time. For those in the back, I would choose Angelman Syndrome EVERY SINGLE TIME. The loss of a child should not be trivialized or compared to Angelman Syndrome.
I get the frustration behind the comment. I get the difficulties that families face with Angelman Syndrome. But can’t you see the beauty as well? Shouldn’t you see the beauty, especially when you’re shaping the future? I do not know this individual and I would be there in a minute for this individual if asked. I just don’t think these ideas and feelings have any place in a room that is going to help with our angel’s future.
-Written by Adam Birchmeier
