Friday, June 10, 2011

F.A.Q. The one I don't want to answer

A month or so ago, I posted some F.A.Q. that I can answer.  But there are a lot of questions about Aurelia that I can't answer.  I know people have good intentions.  And I know that they don't realize certain questions cause a little internal grimace, or wince, or tear.  Some of the questions I get asked I don't want to answer or think about.  Some of these questions I just can't answer.  And here's my disclaimer: If you've asked one of these questions, don't feel bad because the nature of frequently asked questions points to you not being the first person to ask the question.  You're not the only.  I've probably asked the same question too.  And now I'm going to try and answer some of the F.A.Q. that I don't have answers too.

Grimace

Do you know what caused it?
Believe me, I've asked myself this question many times (more on that another day).  The dry, medical answer is no.  The doctors we have talked to about causes can only hypothesize since there was no clear, "aha" moment that points to how Aurelia ended up with hydrocephalus.  There was no infection, no drug use, no genetic reason.  One thing that has been brought up repeatedly is whether there was any intrauterine vascular trauma.  From what I've read, we're talking a baseball bat to the tummy type trauma.  And I had no stair falls, no car accidents, no bumps or bruises (except the ones from Baby Hawk on the inside!).  The reason they bring this up is along with the hydrocephalus, she had a small hemorrhage in her brain and other areas of her brain that are getting less blood than they should.  This could reflect trauma.  The answer to this questions contains words like "could" or "might" or "maybe" or "possibly."  Ultimately, it's just one of those things and we don't know what caused it.

Wince


What are babies doing at 8 months? OR Is she rolling over, sitting, crawling, waving, high fiving, talking, walking, signing, singing, reading, solving math problems yet?
I have a feeling that most mothers get this question in some form.  And it's probably not a difficult question to answer for mother's of neurotypical babies.  This question usually comes from people that don't know our situation.  And I have no idea how to discreetly avoid opening the can of worms that is the answer to this question.  I mean, does the lady in the grocery store checkout line really want a 15 minute explanation to why my 9 month old isn't doing things a 3 month old can do?  Do I answer with what neurotypical babies are doing?  Do I answer with what Aurelia's doing and brace for more questions or hope they're clueless on baby milestones?  Do I say that my daughter has special needs?  I usually take the route of avoidance.

Tear


Does your baby have issues? OR Is everything alright with your baby?
Honestly, people usually ask these questions because of the helmet.  And these people are usually complete strangers that have no tact and think that Macy's is an appropriate place for clueless questions.  But that doesn't take away the sting.  And how in the world do I answer?  Seriously, I'm taking suggestions from the gallery.  I want to show poise and grace, but I also want to let them know there are more appropriate ways to ask things.

Are you still planning to move overseas?
Most of you are aware that before we had Aurelia, we lived in Central Asia.  And our plan was to go back, or to someplace similar after she was born.  These plans were formulated before words like hydrocephalus, CVI, and early intervention were part of our daily vocab.  Before we had biweekly physical therapy appointments and a billion different specialists.  Actually, hydrocephalus entered our world one year ago next Thursday.  Things seemed a lot more black and white before.  And we grieve the loss of "our plans" to a degree.  We also celebrate that God has far greater plans for us!  And we also rest in the unknowns and wait on a known God.  It would be safe to say that our plans are delayed. . . not cancelled, just delayed.  Our medical team has said we need to stay put for 3 years at the least, 5 years more likely.  And if and when we do head out, it will be someplace with a pediatric neurosurgery unit and great health resources for our little lady.

BUT we are going to Switzerland on Sunday!  So, I should close this out and pack!

3 comments:

Erika said...

Hey Julie! Thank you for posting, I am sure it is hard to try and explain much to complete strangers. I know we have been a little frustrated about people asking why we haven't had more kids, we have recently just started saying bluntly, we've lost two, so we don't know. And maybe it is a little wrong, but sometimes it's what people need to hear to realize that they are personal questions for a reason. I hope that someone is able to give you a good answer on how to deal with these in-opportune times!

Dara said...

Hey lady. To be honest when we were out and about with you I thought you handled all the questions, easy or hard, with great finesse and patience! You didn't say more than you needed to, and pertaining to the helmet keeping it short and sweet was definitely the right way to go(especially with so many people asking). You have a great way with words, and God'll give you the rest. I could go on...

MandyRae said...

Just checking on you! I enjoyed reading your post and learning something about Aurelia! Hope all is well!