Fiona Midori King

Fiona Midori King

Hope 4 Fiona

My Hands Are Full

 

 

When you are a parent of a child with a rare disease, there’s much to consider & remember when going about your days.  When needing to leave the house, its not quite as simple as asking your child to hustle along into the car with a bag of snacks & activities to preoccupy them while you attempt to cross a few errands off your to-do list.  I don’t have to worry about making sure my toddler is holding my hand when we are in parking lots and I don’t have to teach her not to talk to strangers.  What I do have to think about, however, is all the support equipment I need to have ready at a moment’s notice.  I have to think about the germs to which I am exposing my daughter’s lungs. Although I don’t draw the attention of others due to my toddler’s temper tantrum at the gas station or her spirited performance of her favorite song in the middle of a grocery aisle, we do draw a different type of attention.  A type of attention that only families who share the similar life experience of having a member with many medical needs could understand.  It is what my life entails & I’ve learned to better understand it & proudly live it each day.

 

I used to be nervous at the beginning when we took Fiona out of the house. Some of the concerns that ran through my mind included: What if Fiona has a seizure? What if she stops breathing? What if people notice that our daughter is very sick? My anxiety is not because I am in any way embarrassed of Fiona, but as a private individual, the idea of drawing attention to myself or to my family made me slightly apprehensive.
Our lives are remarkably different from that of our friends and families.  Whenever we leave the house (even if just for an hour) our car is packed with an oxygen tank, suctioning machine, extra feeding tubes, emergency seizure medication, and syringes of food.  Longer excursions require more equipment. Trips also have to be planned well in advance to coordinate with oxygen delivery and therapists’ visits; there’s no such thing for me as doing something last minute. Our lives lack their former simplicity and security but I assure you that there are still just as many moments of happiness & joy. 
 

When we are in public places, adults usually glance down at Fiona then quickly redirect their gaze, sometimes smiling uncomfortably. Children, curious by nature, always notice that Fiona is different from them and will stop what they’re doing to stare at her until their parents notice and swiftly whisk them away. In the beginning, the reactions of others used to unsettle me. Their reactions used to emphasize to me what I already knew: that our family no longer fits the mold, the false illusion of what’s ordinary.  It’s understandable to be curious about noticing something in your vision that isn’t seen often, but when those opportunities occur please notice with love & kindness.
 

Fiona had a doctor’s appointment today and as I walked through the hospital clinic I elicited a comment.  "Boy, you sure have your hands full!"  What I want to say in response is "Oh boy, and you've lost your manners!" But instead I just smile.
In fact, I have realized just how much truth there is in these strangers’ bold comments.  My hands are absolutely full!
 

My hands are the part of me that:
- brush Fiona’s hair off her face when I give her kisses
- hold and comfort her every second I have
- mix and administrate myriad of daily medications 
- feed her and bathe her
- move her arms and legs so they don't stiffen
- flip the pages to all her favorite books as I read to her
- play instruments for her to hear 
- assist her in doing arts and crafts
- wipe her tears when she gets shots
- rub her hands and feet when they get cold
- stabilize her tummy when it shakes from clonus
- suction her mouth and nose of fluids  
- provide oxygen when needed
- reposition her so she’s comfortable
- perform nebulizer and cystic fibrosis VEST treatments to clear her lungs
- capture many beautiful photos of her.
 

So you are darn right my hands are full- full of love & care & happiness for Fiona and my family.
I hope it is my hands that hold her when she leaves my arms to rest in Jesus’ arms. My hands are not burdened at all. My hands are blessed, and I am so thankful that I was chosen to be Fiona’s mama. 

 

 

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