There is rarely a day that goes by when we don’t get that question. Usually, strangers and passer-byers are in awe of Juliana’s happy demeanor and smile.

trio

pictured left to right: Juliana, Sabrina & Jessa

The answer to the question is “yes” and “no”. Here’s why. When Juliana was one, a bout of ongoing seizures landed us a four-day hospital stay at Children’s hospital. That was the beginning of the discovery to Juliana’s diagnosis of Angelman Syndrome. Angelman Syndrome is a rare neurological disorder that affects about 1 out of 15,000. Common characteristics include a happy demeanor and lots of smiling. There may also be lots of hand flapping and some hyperactivity. Because of the constant smiling, those with the disorder are often called “Angels”.

Now, here’s the “no” to that opening question. Sometimes, Juliana is not so happy or smiling. Angels are non-verbal communicators. And because of the neurological changes to their bodies, they often have issues with severe developmental delay, balance and seizures. Many Angels need less sleep than the average person. Oh, and I forgot to mention that Angels have a desire for oral stimulation, so you will often see them placing objects in their mouths—this includes food because it seems they can never get enough of it.

Imagine what you would be like with all of these things going on in your body, and you couldn’t communicate it or you were too sleepy to worry about communicating. This sometimes leads to tantrums and other behavior issues. The life of an Angel is not easy. There is a lot going on in their bodies. While they can understand a lot, it might be challenging to communicate what they want or need. But just when a challenging moment comes, it can quickly be replaced with a smile or giggle and that seems to make all the other difficulties melt away for a quick moment.

This is the mommy-blog writer version of Angelman Syndrome and my hope is to answer a few questions without making it too complicated. If you would like more insight on Angelman Syndrome please visit the Angelman Syndrome Foundation website.

Comments

  1. P. Johnson
    • August 30, 2014
    • 5:07 pm
    • Reply

    God knew he chose the right parents to raise this little angle.
    My husband and I have been fortunate enough to watch her grow and know she is getting the love and care that is needed. We look forward to hearing more of her journal and continued progress with Juliana.
    Again, thank you for taking the time out of your busy lives to enlighten all of us with what Angelman’s Syndrome.
    Love and continued prayers for all of you. Hard enough with raising a normal child. Whatever that means!!
    May God continue to give you strength to carry on when those hectic times are at there peak.

    • Sabrina
      Sabrina
      • September 6, 2014
      • 7:53 pm
      • Reply

      Mrs. Johnson,

      Thank you so much for the encouragement and prayers. Yes, we get so much more with Angelman’s and all the extra stuff that it brings. But, I wouldn’t trade Juliana for anything. She keeps us on our toes and it is our pleasure and purpose to help her to be the best she can be.

      Please keep checking in with us. Comments like this remind me there are a host of people pulling for us and have an invested interest in seeing Juliana blossom.

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