$55 shoes: On Money Weirdness and the Cost of Cerebral Palsy

People are weird about money.  People are weird about lots of things,  but I am still surprised by how widespread weirdness about money is, among people who have it and people who don't.  And, unlike sex and death, about which people are also weird, money needs to be dealt with on a daily basis and people tend to be much more open with their opinions on the weird money habits of others. Which is one of the reasons why putting together a post about the financial aspects Andrew's diagnosis has been hard for me. Some of you would buy the $55 shoes without batting an eye.  Some of you would buy three more pairs of ill-fitting shoes while waiting for the $55 shoes to go on a great sale and then buy an un-tried $25 pair of the same brand because the company is then out of the $55 shoes.  Some of you never have a choice to buy the shoes.  Some of you think that I am asking you to buy the shoes*  And it's not really about the shoes.

But the shoes are an illustrative example, so I will start there. Aster currently wears a small, relatively simple, AFO (ankle-foot orthotic) every day.  It helps stabilize his gait and prevents him from toe walking or tripping on his toes some of the time.  He started wearing this AFO daily in January, about the same time he started wearing a pair of Pedipeds that I had purchased in some great Internet sale back in November.  The shoes fit well: they have removable inserts so that his left shoe is sized probably a whole size smaller than this right, they have a deep toe box and, while wide, can be secured snugly.  They also have great flexible soles and a reinforced toe that has not worn through in several months of constant wear. Two weeks ago he soaked his shoes in the sandbox and we realized that the other shoes we own that fit him don't fit the AFO.  I looked up Pedipeds on-line and found that they may not make the exact same shoe anymore, but one that is at-least visually similar runs $55 a pair.
I didn't click through and order them.
I don't spend $55 for a pair of shoes for a not-yet-three year old.

This is where the weirdness comes in with attitudes about money and if you want to argue with me about why it is a great deal (i.e. they last longer, fit better, and I don't have to buy two pairs.  Besides, have I looked at the prices of shoes recently?** ) or why I should wait until after the summer or next pt appointment or new AFO, feel free.

The thing is, I'm just not ready to add "special expensive shoes for life" to the list of extra expenses Aster's condition requires.  I've already mentally budgeted for the full $1,000 deductible and then some for health expenses every year.  I'll pay co-pays for appointments and drive to "The City" (or Denver, Dallas or Kansas City where there are physiatrists) when necessary.  I'm figuring out how to get him to and from the three-year-old preK program next year, which will probably require paying extra help.  If he needs a new AFO or constraint cast, I'll buy it, and if we become convinced that botox is necessary, we may very well pay for that out of pocket.

But somehow adding expensive shoes to the mix feels like too much and it feels too permanent.  (I told you people are weird about money.  I'm including myself here.) If I have other CHASA parents reading this, they may be laughing uncomfortably at my balking about the shoes when they have EEGs, sleep studies, seizure meds, custom orthotics, wheelchairs, remodeled bathrooms to they can get the kids in and out of the bath . . . but we all have a level at which rationality leaves us.  I think the shoes bothers me so much because it symbolizes an abandonment of the normal.  Medical expenses are additions to normal expenses. Having to buy special shoes, and possibly two pairs of them at a time, means that there will be none of the normal.  Options will always be limited.

Along with the time, the costs of limited options may be the most demoralizing (at least for those of us who have not suffered lengthy hospitalizations and can pay the direct costs as they occur [a CHASA blogger whose son seems about as affected as mine calculated over $10,000 annually in expenses; we haven't seen that yet but see how it could happen]).  Aster can't use Dianthus's hand-me-down pants much longer because they have buttons and zippers (and potty training attempts are useless unless Aster can pull down his own pants).  Aster may have fewer choices for instruments and sports he plays, jobs he can take and ways in which he can travel. It's not as if those of us with good bilateral movement have unlimited choice in these things. Kids in small towns don't play orchestral instruments; I don't have the ears for trombone or the body for modeling; and even the Mister and my brother don't have exactly what it takes to make it as theoretical physicists; and we all survive(d) it just fine. But it is still discouraging that Aster's options may be*** limited before he's three.  The cheap option always goes first.  And one is left contemplating $55 toddler shoes.

I'll end there.
Hopefully someday I'll get around to blogging about other costs to parents, but for now you can at least follow the thinking (and envision a photo of Aster and his shoes).  Parents have limited options in jobs they take because of insurance, because of needing flexibility for taking a kid to therapists and specialists; because of difficulties finding help and even because services vary so much state to state (and sometimes school district to school district) that sometimes moving is out of the question and sometimes it is a necessity.  [The Mister and I are currently very fortunate in those regards.]

*I'm not asking you to buy the shoes.  I am however, asking you to consider donating to CHASA so that parents who definitely need the shoes in two different sizes can exchange shoes successfully.
**and I have now, and the a new recommended option from the CHASA parents costs $55 and I saw the recommended Nikes at the outlet mall on a great special for $44.  I will admit to being "out of it" when it comes to pricing.  I was shopping in Colorado last year when my dear friend kept pointing out cute, reasonably priced kids clothes. "$12!" I thought, "that's 24 times what I normally pay for the boys' shirts!"
***and may not be.  One of the reasons that one bothers with all of these procedures and therapies is that near-normal functionality may be achievable.  There's just too little known about pediatric strokes and brain plasticity to predict in any meaningful way.