Caring For A Child With Angelman Syndrome: A Mother’s Story

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Story by Mysti K., Caregiver for her daughter with Angelman Syndrome

“It’s four a.m. and something awakens me from my sleep. I don’t hear anything, but I have this feeling that something is not right. I sleepily walk to each of my daughters rooms. First the oldest (eight), she’s sound asleep. Then I walk over to my youngest daughter’s room (six, with Angelman Syndrome) expecting to find the same. When I glanced in, I did not see her in her bed. This was not the first time she had gotten up in the middle of the night. “She’s probably in the kitchen looking for food.” I run down stairs and rush into the kitchen, she’s not there. Panicked, I scramble to the living room. The front door is wide open. My heart racing, I rush out the front door, anticipating seeing her sitting on the porch swing. Instead, I find the front gate ajar. “Oh my gosh, Oh my gosh, is she okay, where is she?” my mind was uttering.

I looked to the right; down the sidewalk, nothing. I look to the left, nothing. I started yelling her name. “Chloe! Chloe!” Then I heard a familiar laugh and “Guh, guh!” I ran in that direction, and she calmly came walking around the end of the street corner.

That day as soon as the stores were open, we installed every kind of lock that Chloe could not reach and an alarm on all doors and windows. Every time the door opens, it sounds like a prisoner escaped. But, peace of mind is priceless!

As a single mother of two girls, it is always challenging to balance everything. Children with Angelman Syndrome are not able to talk as typical children can. Some may never utter an audible word. As a caregiver of a child with AS, it is similar to looking after a giant two year old. Imagine a toddler that has the physical capability to do what a typical person their own age can. Yet they do not understand danger and consequence. Life is very busy in our home, with constant “Chloe watch” as we call it.

When Chloe was first diagnosed with Angelman Syndrome, I was told that she may never talk. As her mother, it crushed me to know that I would never hear her say “I love you mommy!” Nor would she have the ability to tell me what she wants, what she needs, or how she feels. This was devastating to me.

As Chloe has grown we have learned that Chloe can speak, Chloe can express how she feels, and that she lets us know what she wants and needs. It may not be with usual words that we are used to hearing, but it’s in Chloe’s language. Who would have known that “guh, guh!” could mean Leap Pad or television? But, to us Chloe does speak, and we almost always know what she means.

When people are mentally or physically challenged, we call them “special.” But, “special” has a bigger meaning than what we typically think. When Chloe says “Ayy Ya Ya, Mo mo,” In Chloe language, she is saying “I love you mama!” Now that is what “Special” means.

Being a caregiver and mother of a child with special needs is truly special. They are people that no matter how bad your day is, how stressed out things can get or what chaos they have created can turn your frown upside down. Their unconditional love and joy to be with you and to see you, the smiles on their faces, their big slobbery hugs and kisses, their ability to see life through rose colored glasses and their ability to make you laugh in any circumstance is what really makes them special.

Chloe has shown me what is important to focus on in life; not to sweat the small stuff and to enjoy each moment for what it is. This is the privilege of being a caregiver.”

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