Is She Always this Happy?
There is rarely a day that goes by when we don’t get that question. Usually, strangers and passers-by are in awe of Juliana’s happy demeanor and smile.
They are experiencing the unique characteristics of Angelman Syndrome (AS) first hand.
The answer to the question is “yes” and “no.” Here’s Why. When Juliana was one, she had a string of seizures that led to a four-day hospital stay.
That was the beginning of Juliana’s diagnosis of Angelman Syndrome.
The Quick View 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 their happy disposition, those with the disorder are often called “Angels.”
Angelman Syndrome Up Close and Personal
Here’s the “no” to that opening question. Sometimes, Juliana is not so happy or smiling.
Angels are non-verbal communicators. Because of the changes in their bodies, they may have severe developmental delays, balance challenges, and seizures.
Many Angels sleep less than the average person. Angels also have a strong desire for oral stimulation. You will often see Juliana placing objects in her mouth—this includes food because it seems she can never get enough of it.
Imagine what you would be like with all of these things going on. What if you couldn’t communicate your feelings or discomfort? This inability to communicate sometimes leads to tantrums and other behavior issues.
Every day is a New Day
The life of an Angel is not easy. Angels understand a lot, but it can be challenging for them to communicate their wants or needs.
But, just when a challenging moment comes, it can quickly be replaced with a smile or giggle. This makes all the difficulties melt away for a moment.
This is the mommy-blog version of Angelman Syndrome. My hope is to answer a few questions without making it too complicated.
Long story short–each day is a little different for us and Juliana keeps us on our toes.
Life with Angelman Syndrome is challenging and unexpected. Still, I couldn’t imagine things any other way.
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.
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.