An “Angel” among us…

When angels visit us, we do not hear the rustle of wings, nor feel the feathery touch of the breast of a dove; but we know their presence by the love they create in our hearts.” ~ Unknown

Since the day my precious minis were born nearly 3 years ago, I have called them my angels. While Q slowly morphed into nicknames of bug and punkin, E always stayed my angel. Perhaps, it was the very presence of the love she created in my heart and those around her that should have been my first indication that indeed the word angel would pertain to her in a way I could have never predicted.

On Monday of this week, we got word that E would finally have a diagnosis. As I sat in a meeting laughing and joking with 3 of my most favorite colleagues, my phone rang. I instantly recognized the number as Cedars Sinai Hospital, having spent the last 3 years answering and phoning doctors to discuss the minis’ conditions. I expected the call to be from E’s High Risk Pediatric Doctor confirming her appointment for Thursday, so when the genetic counselor identified herself and sounded as if there was news that would fall out of her mouth if I didn’t agree to talk to her just then, I shifted uncomfortably in my boardroom chair and tried to disappear as I told her now would be fine to speak.

Her voice was a combination of relief and nervous energy…this was not going to be good. It had been 13 days since we had done our bloodwork and results were in. Rather than call us in to deliver the news and have to sit on the results, she had called to tell me E has a genetic disorder called Angelman Syndrome. I could feel tingling all over my body as I tried to focus on what she was telling me. I thought we had pretty much discounted that, even though we were testing for it, the Geneticist had said he didn’t think she had it. We were only testing to rule it out…

I could feel my body temperature rising and my hands shaking as I tried to take notes about what she was telling me. In that moment, it was if she stepped behind a heavy steel door and was trying to ask me questions about if she could call anyone, if I needed anything, what time could I come in to meet with the doctors the next morning. My head cleared long enough to schedule the appointment at which point I looked up to feel the entire room in my moment. They were watching me. They all knew I was waiting and I could tell they too knew whatever I was hearing was not good. I looked into their caring eyes as I hung up the phone and started to cry. It was Angelman’s.

3 days later, I can’t seem to shake the fog that is following me and the sadness that fills every part of my body as I think about this new label. From an extreme high of E pulling herself up on the couch for the first time on Sunday when life and the future felt full of possibility because there were no boundaries or statistics on if she will talk, walk, live any sort of independent life to this feeling that my my heart is in pieces. I miss my bubble. I miss Holland. I had become quite happy in my Holland of unknown innocence with no labels, no statistics, no prognosis, only possibilities of whatever my imagination could create for her. Now, there are groups of people, studies, reference points. Yet, for E, today is exactly the same as 3 days ago when she pulled herself up for the first time. Her future is full of possibilities. Her innocence and spirit are in tact, it is mine that is slightly broken.

People always tell me E is the happiest baby they have ever met. Angelman’s is often referred to as “Happy Baby Syndrome.” It’s this happiness, now having a label, being attached to a “syndrome,” that rips at me the most, for it’s this happiness that gives me strength. The happiness is pure light and joy and I suppose for my little angel, this is just what she is, pure love and light. A true angel.

My sweet angel.

So our journey continues and we push onward and forward. As I cope with this new place, with trying to learn more without overwhelming my mind and heart with information I don’t really want to know, and trying to use the information to inform increased areas of focus and intervention, I ask for your positive thoughts and prayers. It has been a long time since I have truly used this safe place as a therapeutic outlet, but today, it is here that I can share and tell you about my little angel E, who when you see her smile you can only feel the presence of love that she brings, and today I hope some of her light and love will make today ‘anewfavoriteday.’

If you want to learn more about Angelman Syndrome here is a link:

Featured Image Source:

20 thoughts on “An “Angel” among us…

  1. Beautiful like our baby girl. She’ll beat this because she takes after her momma and will allow nothing to stop her from reaching her full potential.

  2. Love you and am praying for you and sweet angel E. You are the best mama that sweet girl could have hoped for. This is not the answer, it’s not the end, it’s the beginning of new questions and a new journey with many discoveries and milestones. xoxo

  3. Dear friend, I read about the condition Little E has and all I really can say right now is that I love you, and I know you’re going to do everything in your power to help her be her very best. I’m sorry that you got the news and this diagnosis. I wish I had more to say. Just know that I’m here, thinking about you, and praying for you and your family.

    1. Thank you El. Love to you my friend. Yes, indeed, and with all of you behind us all the time, sending love and thoughts and goodness she and we will make it through and will be amazing. Love you.

  4. Remember that her potential is no less today than it was a week ago without a diagnosis. A new label does not change her future. You change her future.

    My BFF has a daughter with Down Syndrome. She was the first among our group of friends to have a baby, and at age 22 she gave birth to a daughter whom doctors said would have a “limited” life. If they could see her now! Captain of her bowling team, avid theater buff, lovely young woman of 27. Her mother allowed her to reach her potential by trying, not by applying standards.

    E will blossom in her time. She will reach the fullness of her potential because you won’t allow anything less. Shake off the label and just look into her eyes.

    You’re still in the Holland you’ve grown to love.

    1. Lisha has expressed beautifully the thoughts I’ve sat here trying to formulate into words. I read. I choked up. I ached for you. And then I thought, she is the same little E who pulled herself up.She is the same little E who has already beat so many odds and predictions. She is the same little E who loves her mother, father and brother well, just as they love her. She is the same little E, the girl with a bright smile and joy to share,not because of a syndrome, but because of love.

      And Shannon, you are still the woman so full of courage, strength, and love. Yes, the world may feel dark right now with the advent of an official “diagnosis”, but please remember that you have a huge community holding onto the light and hope until you can reclaim them, as I know you will.

      Sending you all love, light, and lots of supportive energy and many, many hugs. xoxo

      1. Oh Mary, you are just the best. Your words always always touch me and carry me and give me strength and hope. You are right about all of these things and I am so grateful for you and the community that holds and gives me such love, light and hope. Much love to you. xoxo

    2. Lisha, you are so amazing…thank you. I love the story of your friend and I did exactly as you said. I looked into her eyes. They are not the eyes of my daughter with a syndrome, they are the eyes of my daughter. My little E. Who gives so much and can do so much and for who the possibilities are still endless…I am still in Holland and thank you for reminding me. xoxo

  5. I have never been a fan of labels – they can both help and hurt. Let the label help you to find the support both of you need, but don’t allow it to define her! E, with your help, will define herself and she will be so much more than a label. Prayers and happy thoughts to you and yours!!

    1. Thank you Theresa…yes, I think today I had that break through today…labels create perceptions, implant thoughts of what may or may not be, and today, I had just this moment to let go of that label. To use it for what it’s good for and to not let any of the other part her label define her or us. Thank you for your prayers and happy thoughts, they helped me more than you can know.

  6. So much love coming to you from me. I agree with everyone’s comments above, however, that you will make her life limitless. This is because of who you are, Shannon. You will read up and understand what the doctors say, but then you’ll go on and live and let her live beyond that because she deserves it. I find it no coincidence that you gave her the nickname “Angel”, no coincidence at all. You and your family are so special, so feel what you need to feel, get the help you need for yourselve and your little ones, and know that folks like us are cheering for you like never before. XOXOXOXO-SWM

    1. Awwww love to you my friend. Always there with the perfect things to say and it gives me so much to read them. Seriously, I think all of this has even been a bit better because I have you all cheering for all us. We will make it back and she will be beyond any limits…we are on our way now with you right by our side. xoxo

  7. I am thinking of you Shannon, I know that place of getting that phone call and having your heart drop. My daughter was finally diagnosed with a mitochondrial disorder and as much as it has turned my world upside down I have tried to stay anchored in that same fact that you shares. She is still the exact same little girl she was the day before that phone call.
    I’m thinking of you and truly I am here for you if you need me. Please email me if you need to vent, cry, yell at the world.

    1. Thank you so so so much Jessica. I read a bit about your little one’s diagnosis and my heart hurt but yes, we must stay anchored in the fact that they are the same, and they still love life, and love all of us and we love them. None of that has changed. You are so sweet and I would say the same to you. I find you to be an inspiration. x

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s