How a Hospital Memento Changes Scary Memories for the Better

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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I never planned to keep anything from my 12-year-old Angel’s hospital stay in 2011. But for some odd reason, two tiny, cute robes she wore during the four-day admission survived the transition home. Juliana now wears one as a makeshift apron when she’s eating. Her 10-year-old sister, Jessa, uses the other one. The robes serve as a reminder of the beginning of our journey with Angelman syndrome (AS).

Something unexpected

I see Juliana’s robe as a small part of the battle for sustainability. It’s just a cheap, little thing that wouldn’t be worthy of a donation. I could have tossed it, but that seemed wasteful. In addition, I wanted a useful reminder from our first experience with AS.

No parent of an Angel forgets those first days or weeks after learning about Angelman syndrome. For us, it began as a series of seizures that crept up on Father’s Day morning. Seizures are a common occurrence in Angels. About 90% of Angels may experience them. But of course, I had no knowledge of this then.

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Juliana had her first seizure early that morning. She became listless and simply stared. I felt calm but terrified. The day progressed pretty normally, but then the seizures wouldn’t stop. Juliana was admitted to Children’s Healthcare of Atlanta. Our world changed in an instant.

A better spin

It’s been 10 years since that four-day hospitalization at Children’s Healthcare. My husband and I are better versions of that frightened couple that sat in the hospital desperate for answers. The fear has diminished. But some days we still struggle for answers. However, there are some things I can appreciate when I look back on that hospital nightmare.

First, we walked away with a few answers. Although no parent wants to know their child has Angelman syndrome, at least we had something concrete to name. I am also appreciative of an early diagnosis. Juliana was barely 2 when we learned the name of our nemesis.

Knowing this sooner paved the way for some great early interventions. Many rare disorders share common characteristics. Because of this, Angelman syndrome was not the first diagnosis we received. However, before we left the hospital, AS was confirmed.

Many people may not want a visible or physical reminder of one of the scariest days of their life. But for some reason, Juliana’s robe has become a symbol for better things. It’s become a part of our daily routine. When I put it on her at breakfast before school, I think of the good things that have unfolded since she wore it at the hospital.

Angelman and hospitalization | Angelman Syndrome News | Juliana eats breakfast while playing with her iPad, dressed in a pinkish robe she received during her first hospitalization a decade ago.

Juliana eats breakfast wearing a robe from her 2011 hospital stay for seizures. (Photo by Sabrina L. Johnson)

Of course, she won’t be able to wear the symbol much longer. Juliana is 12, and a robe meant for a 2-year-old doesn’t have much wiggle room. However, I plan to keep it around as long as I can. And what happens to it after that? I’ll find a new life for it somewhere. For some strange reason, I like having that visual reminder of all we faced and survived.


Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Angelman syndrome.

Comments

LJ avatar

LJ

Wow, loved this weeks article. I remember that precious gown.

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Sabrina L. Johnson avatar

Sabrina L. Johnson

How could we ever forget!

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