Yes we are different, but our different is normal to us. And we have such laughs sometimes as special needs parents when we realise all the weird things we do… and we do it so naturally… as if it’s normal to other people as well! What is normal in any case??
I can’t talk for other disabilities, but as spina bifida parents:
We get weird stares every time we fill out a medical form and we don’t even have to look at our medical aid card to get our membership number, we know if off by heart.
When your child is admitted to hospital you take a typed-out list of conditions/diagnosis/previous operations with you because there’s not enough space on the admission form for the medical history… and even if there were enough space 90% of the hospital staff can’t pronounce or spell half of it!
We discuss catheters over a cup of coffee without even blinking.
When we are invited to a birthday party of another spina bifida child we know a pair of pants will always be welcome – and if it’s a toy it better be latex free and NO shoes because it probably won’t fit!
…and our own weekly grocery list will also look something like: Milk, bread, pants…
We sometimes correct our child’s postural position (and yours) – and sometimes even massage and stretch their muscles – without even realising that we’re doing it…
We have the cellphone numbers of almost every pediatric specialist you can think of and make friends with their receptionists – not only to have a foot in the door – but also because we spend a tremendous amount of hours with them in the waiting room!
We are not afraid of anyone who parks on a disabled parking – not even a very intimidating big guy with huge muscles and an attitude can scare us when we are on a “don’t park here” mission.
We don’t stress about the small stuff like removing tonsils or having measles… we deal with foot, back, spinal cord and brain operations on a regular basis so we are not only friends with the receptionists, but also with the operating room staff.
If we were allowed to I’m sure we would all be able to insert an IV line or give an injection and we all know where to secretly disable that very irritating alarm that goes off whenever your child’s drip doesn’t run as it needs to – we’ll shut the machine up and fix the line ourselves, instead of waiting for the staff – the chance that they will wake up your child in the middle of the night is just toooo big!
We had to learn a “new language” and abbreviations which sounded like Greek in the beginning, but now we use the slang like pro’s – and we can read and understand CT, X-ray and MRI reports.
When we as Spina Bifida moms meet each other we can introduce our children as “Anika has SB MM L3 with HC and CM with a TC” … and believe me that is only half of the diagnosis!
BUT MOST OF ALL, We all know that TTSB stands for “Take That Spina Bifida!!” – we love to use it whenever our children achieves something new – and we know that the other spina mommies will celebrate with us. We know that our children may have Spina Bifida but Spina Bifida will never have them! We know that they are Wonderfully and Fearfully made and that our God is bigger than any challenge or diagnosis… and we know that we love our children unconditionally and that they are perfect in our eyes.
So yes, our circumstances may be different, but it’s divinely different and soooo worth it 🙂
…oh yes and the packs and packs of wipes are for the dirty wheelchair-hands!