Twenty three years ago next month, I gave birth to our
sixth child, our second son. Little did we know that
life as we knew it was about to end, and a new
journey for our family would begin.
I took this portrait of Landon and I when he was three
weeks old. We didn't know at this point that our sweet son
had a condition known as Angelman Syndrome. Named
for the English pediatrician, Dr. Harry Angelman, that first
identified it in a few of his patients in his practice.
From the very beginning, my mother's intuition told me that
our son was very different than our other children as
babies. He was a poor feeder and had difficulty
eating and gaining weight. Our Dr. was concerned as well, and sent
us to specialists in Boise...but Landon's condition
remained a mystery.
This is our boy at about twelve months...when he finally
doubled his birth weight. Let me just say... this was a big deal
at our house!
conference for parents of children with disabilities, and she asked about
Landon's condition. At this point he had been given a diagnosis
of developmental delay with unknown causes. When
this mom heard Landon's symptoms and behaviors, she said
that she had just read an article about a rare syndrome
that seemed to fit. She said that after she returned home from the
conference that she would send me the article.
I will never forget the day I read about Angelman Syndrome.
I finally could quit searching for a cause...for a reason...someone to tell
me what I needed to do to make this little boy's life better.
I won't go into detail here of the causes of the syndrome, as it is
mind boggling to explain...or the symptoms and
behaviors of this syndrome.
Google lists many sites that explain
the disorder and it's causes very well. Landon is considered
severely affected, as are about ten percent of
Landon with big sis, Haylee.
I could write volumes about the therapies and interventions,
but what I would really rather do, is write about
the amazing gift that this sweet son has been in our lives.
The joys we have experienced, have far outweighed the sorrows.
His sweetness of character has brightened our days and lifted the burdens
of his daily care.
This road we have traveled has been paved with beauty.
Yes, I went through my sad times...my angry at the Lord times.
The why mes...the why hims...the what ifs.
The maybe there's a cures... the maybe he'll grow out
of its, but I got through them and now can just appreciate the
gift that is Landon.
And boy, what a gift!
One of the hallmarks of the syndrome is the excessive laughter
exhibited by the children with the condition. Landon
used to laugh all the time as a baby. Seldom did he cry...but would
laugh until we were all laughing with him.
For a very long time I had wanted to write a book about
the experience of raising a child with Angelmans...as a kind of
therapy for me. With the passage of time however,
I find that I no longer need to write the story.
I had always planned to title the book 'Laughing with Angels'.
The other night I googled laughing with angels to see if my
blog was there and interestingly, a mother of a child with autism
has written a book titled 'Laughing with angels, dancing with butterflies'
How cool is that!
This is our Landon today.
And that is why the name of my blog is what it is. It is the story
of beauty and bliss and life with an angel!