Meet Hannah: What You Don’t See

Hannah in pre-school

Meet Hannah, you may not not realize all that she struggles with from looking at her.  She is twelve.

This is Hannah’s #InvisibleFight With Albrights Hereditary Osteodystrophy and congenital hypothyroidism.

The school bell rings and it’s Hannah’s signal to use the restroom. She follows this routine four times a day and most kids notice she doesn’t need a regular bathroom pass to leave class, but has special permission. The other kids watch her come and go, but go back to their own academic routines.

What they don’t know is that Hannah has the bathroom schedule to strengthen her muscles and improve her sluggish system.

What they don’t see are the medicines she takes for congenital hypothyroidism or the times she is so constipated that she needs a cocktail of medicines that no child should have to take.
The intercom buzzes in Hannah’s 6th grade classroom alerting her teacher that it’s time for Hannah to leave. It is time for another doctor appointment, but her appointments aren’t wellness checks like those of her peers. Hannah is most likely about to give blood for regular lab work to make sure her calcium and phosphorus are at safe levels because of her Albrights Hereditary Osteodystrophy, AHO. Some of Hannah’s early dismissals from school are for gastroenterology checks or cardiologist appointments to monitor her cholesterol levels. Others are consultations with her endocrinologist to talk about her thyroid labs, or to schedule x-rays to see if her bones have fused any further. Right now her bones are registering as those of a  17 year old even though she is only 12.

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Hannah loves to sing.

When Hannah’s friends get on the bus to head home after school, Hannah is usually still sitting in a doctor’s office. The other kids rip open their lunch bags full of breads, jellies, condiments, juices, milks and sugary treats. They peek into Hannah’s pink bag but don’t bother to pay much attention as her lunch spread isn’t very appealing. Her pink lunch bag is filled with plastic containers, including a water bottle filled with ice, water and lemon. Whether the others pack their lunch or have help from home, Hannah’s lunches are put together with more than TLC. She must follow nutrition and consumption guidelines from her doctors and nutritionist. Hannah’s parents have created a complete menu of approved and healthy choices that give Hannah a sense of control in her restricted world.  Hannah’s diet ensures balance for weight management and low phosphorous.  Her mom hangs the menu on the fridge for Hannah to see every day. There’s no spontaneous eating for her.  No sneaking cookies!

The bell rings again and it’s time for specials.

If it’s gym class, the other kids run with full abandon in their uniform gym clothes. They’re having so much fun they don’t notice Hannah can’t balance, run well, have coordination or control of her muscles like them. Her clothes aren’t designer or full of buttons and zippers. She wears a flexible waistband and baggy shirts for comfort. While the students are ready for more, Hannah tires easily. It’s a combination of diagnoses that has her schedule altered because she is so exhausted by afternoon, morning is the only time they can get academics done with her.

Even with other special and regular classes where her friends raise their hands to repeat the question, Hannah forgets the answer even when the teacher repeats. There are times she requires an instruction broken down and repeated several times. The kids don’t see that when they finish taking notes or a test, Hannah is still at the beginning of the test, trying to comprehend the directions.  Hannah has to work harder than most of her peers, but her grades are good.  Hannah enjoys participating in school musicals and children’s ministry at our church.  She has to practice lots, but she is always able to remember the dance moves, scripts and songs.

To her peers and friends, she’s Hannah. They miss her when she’s not in class and encourage her when she’s struggling, thinking she’s just tired or having a hard day. Kids are pretty great like that.  Hannah’s friends see her not for the size of her clothes, but the size of her heart.  We all do.

To her doctors, Hannah is a young patient with congenital hypothyroidism, Hashimotos and AHO, under constant monitoring to wake and protect her thyroid, observe bone fusion, and improve constipation, bad cholesterol and weight management.

To her family, Hannah is the tween that loves bling, singing and showing us all that we’re living a normal life—her normal.  Hannah is happy and she makes us all happy, everyday . Hannah’s eyes smile as much as her actual grin.

Julie's mother hannahEditor’s Note: Hannah’s #invisibleillness story was edited by Patient Worthy for publication during Invisible Illness Awareness Week, and originally authored by Hannah’s mother, Julie Arduini, Check out her websites and the books that she’s authored here.Patient Worthy thanks Julie for reaching out to share Hannah’s story. Keep singing girlfriend!

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