All Fall Down

We all fall down.  We might trip over a crack in the sidewalk.  We might miss a step while carrying the laundry to the basement.  We might fall off a curb while walking and texting.  We might act or speak in a manner that slice right into someone’s heart.  We all fall down.  The question is whether we can get back up.  And whether we have a backup plan if we don’t.

I was reminded of the importance of backup plans a few weeks ago.  The weather in Iowa was stubbornly holding on to winter, but Kyra and our backyard birds were thinking it should be Spring.  So, Kyra and I spent the afternoon cutting and gluing and sewing and creating a milk jug bird feeder.  A few hours later, the feeder was host to our first chickadees, juncos, sparrows, and cardinals of the season.

Now, there’s one thing that always surprises me about those tiny animals called “birds”: They eat a lot.

Soon, Kyra was thinking that it was time to refill the bird feeder, and I was thinking that we should have used a bigger milk jug.  I donned my boots and coat and mittens and hat and scarf and headed out across the 20 feet or so of tundra to the empty birdfeeder, while Kyra (securely strapped in her wheelchair), and the dog (too smart to go out in below-zero weather), watched me from the back door.

Then, you guessed it, my boot slipped off the ice-crusted bottom step of the deck, the birdseed bucket flew into the air, and I landed bottom-up on the brick patio.  With my brain fully jostled, and my mood no longer jovial, I stumbled in the house and took stock of myself… nothing broken or terribly bruised.  But the incident reminded me of how quickly we can all fall down, and how important it is to have a backup plan in place when you care for someone with profound disabilities.

Ultimately, the plan should be: 1) Quick to find; 2) Easy to use, and; 3) Up-to-date. More importantly, the plan should be in place NOW.

Kyra’s backup care plan started out with me having a midnight anxiety attack about not having a plan, and scribbling down some notes that I stuck to the refrigerator.  Not perfect, but a start.

Now, the “Kyra Care” plan lives in a blue 3-ring binder on a shelf in the kitchen, so it’s easy to find.  Copies of important day-to-day routines, such as Kyra’s meal plans, medicine schedule, and medical providers are posted in obvious places (i.e. on the refrigerator and inside the medicine cupboard door), so they’re easy to use. And, I have a scheduled reminder pop up on my Google calendar to remind me to review the information every 6 months and keep it up-to-date.

Still not perfect, but I believe it is enough to keep Kyra safe and healthy if I fall and cannot get back up. And that helps me sleep at night. This is what Kyra’s plan currently includes:

1. Seizure Action Plan – Kyra hasn’t had a tonic-clonic (aka Grand Mal) seizure for more than 2-1/2  years (knock on wood), but the threat is still there. The  Seizure Action Plan is reviewed by her neurologist annually, and shared with her school contacts.
2. Medications & Supplements List - This list includes Kyra's allergies at the top, then continues with each medication and supplement that Kyra takes, the time and dosage of each medication, the prescribing doctor, the pharmacy we use, and what the medication is used for.  The list is included in the Kyra Care book and posted inside the medicine cupboard.
3. Providers – This list includes doctors, dentist, medical supply agency, social service agencies, therapists, Special Olympics coach, school contacts, and a few other people that might be able to help in an emergency.
4. Meal Plan & Schedule - Kyra eats almost exclusively by g-tube, and I cook, blend and strain all of her meals. The list of how to prepare Kyra's meals is included in the Kyra Care book, and posted on the refrigerator for quick access.
5. G-tube Feeding Procedure - Not everyone is comfortable feeding someone with a g-tube.  I have created a guide that helped her school personnel be more confident, and will hopefully help other newbies with Kyra's g-tube meals. (Click here for a copy...)
6. Activity Schedule – This page is just a general schedule of Kyra’s day, and includes the clothing she prefers to wear, and a list what goes into her backpack every day.
7. Therapy List – Kyra isn’t in any formal therapy program at the moment, but I keep a list of the types of therapy activities we do, how often, and who to contact for help.
8. Legal / Financial – This section of our Kyra Care plan includes information about Kyra’s guardianship / conservatorship arrangements, government benefits, and Special Needs Trust assets and trustees. (If you are the parent of a disabled child, keep in mind that you will have to go to court to maintain guardianship / conservatorship when your child turns 18. My non-professional suggestion is that you start this process soon after your child's 17th birthday. Depending on where you live, you may have more or less hoops to jump through to prove you are fit and able to continue to care for your child.)

That’s it… so far.

Today, the weather in Iowa is cooperating.  The temperature is pushing 60-degrees, the birds are singing and winging, and the sky is so blue it almost hurts. Days like today make me grateful to be alive, grateful to be living on these acres of ability, and grateful to know that falling down isn’t the end of the world.

Peace,
Sara & Kyra

• Click here to view Kyra's G-Tube Feeding Procedure guide.