Perspective

After what has seemed like the busiest month ever (although I feel like I say that almost every month), our day today made all the chaos stop for a moment and things just went right.  And that gives me the space to step back, evaluate the path we're on, and regain the perspective that I often lose along the way.  When I compare this year with where we were at this point last year, it's a no-brainer that we're in a completely better place.  I wish I could go back and tell myself back then where we would be today.  I would have probably slept a little more.  But knowing that you're in a better place compared to your last major struggle doesn't mean that you still aren't struggling.  Avery not being in the hospital is our ideal scenario, but even if she's home, her day-to-day life poses a huge list of challenges that often make me feel like I'm drowning.  She has been doing really well and we have mainly been managing the typical responsibilities that come with her medical issues, and some occasional hiccups.  But over the last five weeks, our life has been kicked into high gear once again with back-to-back doctor appointments and new issues to manage.  When you throw this into "regular" life stuff, like work and commitments already made, etc., it's not easy to say the least.  It seems like if we get out of the habit of being on the hamster wheel for even a few months, it's that much harder to get back on it.

Avery is currently being evaluated for some behavioral and development issues that we and her teachers are noticing.  It's nothing that comes as a surprise, but her CP and developmental delays, coupled with the damage that epilepsy - and the drugs she takes - are starting to pull her back farther from her chronological age.  Again, nothing really new, but hearing that your child is severely delayed in several areas is no picnic.  In addition, the physical repercussions of being in a hospital bed for six weeks, including a coma are still ever-present and she has been showing signs of weakness in her legs, and some other issues.  That specialist would like her to get into intensive PT and OT as well as wear some braces on her feet, so she was fitted for those this week.  They will not be the kind that go up her leg, so that's a little easier.  Lastly, her routine bloodwork she gets while on the ketogenic diet came back with some numbers that weren't great.  Expected for a kid on the diet, but still crappy to see on paper.  We had to add a few supplements and adjust her foods a bit, and we are hoping that helps bring the numbers into a normal range again.  The diet is the main reason her epilepsy has been controlled, so we need to stay on it while we attempt to wean at least one (hopefully more) of the medications she is on.  The fact that we give our kid seven drugs and five supplements every day is overwhelming - in terms of principle, time, and money, to be honest.  But at the moment, they are a necessity.  So, while none of these issues comes close to being the worst we've been through, the fact that they all came at once (coupled with parenting a particularly strong-willed three-year-old and a special needs child who is also challenging us behaviorally) has rattled me.

Today, though, was a good day.  Avery had her first session with outpatient PT after being on hiatus for six months.  We were lucky enough that her former school PT now works at a facility that does pediatric PT/OT, and it's FIVE MINUTES from our house.  Major score.  She is amazing and Avery took to her, and her exercises very well today.  Her typical reaction to PT is crying, so anything was progress, but how she did today far exceeded my hopes.  So that boosted my mood ten-fold.

We also got the chance to meet up with a family who we know through one of my vision impairment support groups.  It's an amazing mom who started an awesome resource/support page for parents of VI kiddos, and she's an advocate not only for her daughter, Cailee, who has a rare condition called FEVR, but an advocate for our  community as a whole.  She, her mom, and Cailee came to Michigan to meet with the same retinal specialist we see, because he's one of the top in the world.  She arranged for us to take a tour of Leader Dogs for the Blind (also based near us in Rochester Hills), and meet a few other families with kids who are visually-impaired.  The tour was so informative, but getting the chance to hug a fellow VI mom who has walked in my shoes is so rare, and so valuable to me.  We have spoken for awhile via Facebook, but nothing compares to meeting face to face, talking about your kids, and knowing the other person totally gets it.  She is seriously such a cool person, and Cailee is one of the coolest six-year-olds (besides my own!) I have ever met.  A kid who lives with the burden of deteriorating vision, yet you'd never know it by being with her.  One tough cookie she is.  A group of us met up later with our kids, and Avery had hit her limit by that point, so I brought Lucy in her place (who had the time of her life and fell in love with Cailee) and it was so nice to bond with a group of moms who can understand where I'm coming from.  Makes me even more motivated to make a meeting happen with the rest of my VI mom friends :)

So I regained some perspective today that I had lost over the last month.  Life is hard, and there will be varying degrees of 'hard' with each passing day, but every so often, you get good times too.  These break up the chaos and allow you to recharge your batteries.  Because, boy did I need that.
And one thing that sticks out in my head from the day was something the woman who led our tour at Leader Dogs said.  Her teenage daughter volunteers with blind kids and works some camps that LD puts on.  She was talking with one of the blind teenage girls about the things she wishes she could experience if she had sight.  She explained that she can't just grab her car keys and go wherever, and she had to rely on someone to help her with a lot of simple tasks.  The woman said this really struck a chord in her daughter; the thought of this blind girl desiring something that we take for granted.  She decided to get the word "perspective" tattooed in Braille, on the arm that she leads with (helping along a blind person).  The woman told us this story because she noticed my tattoo in Braille that says "persevere."  I was so touched that kids like mine can affect people so deeply, and how many people exist in the world that have a passion for helping others.  And being one of those people is my goal every day.