Thursday, August 16, 2018

Access: The Right of Everyone

I rarely vent on social media, but this is a social issue.  Not that I'm under any delusions about reaching the people who really need to see this, but still...  I'm frustrated, and angry, and tired, and probably a multitude of other emotions. 

Handicap parking and access.  Yeah, that stuff. 

Four times, FOUR TIMES! in the past 24 hours I've struggled because someone (okay, four someones) decided that they and theirs were more important than someone needing help.  Twice at a soccer tournament, twice at back-to-school night, the same school. 

I get that there are a lot of cars.  I get that it's hard to find a spot.  And those empty spots up front look mighty tempting.  But ya know, there's a reason they're so close to the entrance and it's not because I think I'm better than you.  It's because we really need them. 

And those ramps on and off the sidewalk?  Yep, they're pretty important, too.  My son in his wheelchair with all his equipment weighs between 125 and 150 pounds.  Tipping over his chair as we try to negotiate a curb would be disastrous. We need that access. 

Let me take you through what it takes to get Aaron out and about.  We do it a lot, it happens, but it's not that easy. 

Diaper change, food and meds if we're going to be gone long, oxygen tank.  Do I have enough for the outing?  How long will we be gone and do I have a back-up plan if it lasts longer?  What if he struggles and needs more?  Have to plan for that.  Do I have enough battery on his pulse/ox?  Has his suction machine been charged?  Do I have a new "nose" (filter) and suction catheter for when he gets junky?  And we haven't even moved him yet.

Time to go.  Lift him into his wheelchair.  Turn his oxygen on, unhook him from the vent, hook him up to the tank.  Turn off the vent, humidifier, oxygen concentrators (yes, two).  Unplug the pulse/ox and wind up the cord, place on the wheelchair.  Buckle him in, five buckles.  Now we're ready to leave the room, as long as the switch from vent to "nose" hasn't dislodged anything that will need to be suctioned first.  That happens a lot.

Out to the car, down the ramp, open the car, lower that ramp, up into the van.  Reattach the floor buckle that has to be undone to get him in and out.  Secure the wheelchair at four points, secure his seatbelt.  Make sure it's not twisted and he's all good.  This requires access through both side back doors and the rear door.  Add extra oxygen if we're going to be gone more than a couple hours.  There's always a back-up tank in the car, but it's for emergencies, and yes, we've needed it before.

The good news is that his "go bag," his emergency bag with extras in it, is always on his wheelchair, so I don't have to remember any of that, unless of course I use something and it needs to be replaced.

Finally, we're on our way.  BUT when we get where we're going, it's a reverse of putting him in.  And then once we're out, we have to move kinda slow.  We can't just "slide" through the crowd.  We can't take the stairs.  We don't fit in a lot of spaces.

Guys, this is hard!  But it's doable, and I don't mind.  But when someone who is able-bodied thinks that what they are doing doesn't matter, well, it does!  It saps the energy, energy that I really don't have to spare.  It takes away from what I do have to give.  Frankly, it makes me want to cry.  And when I mention that I can't get to my car because you're blocking the ramp off the sidewalk (and there was no way to go around, there was landscaping on both sides) telling me that you were just leaving anyway, like seriously, what was my problem??  Well, YOU are my problem.  And I have already waited, trying to figure out how to get to my car.  Waited in the heat with a little boy who was already struggling.  Waited while trying to see if maybe I could possibly ease down around the driver's side because not only were you taking a handicapped space, you were also parked over the hashmarks that are designed for a wheelchair van to use.  

So please, people, think of someone else.  Think of those who are not as able as you are.  Yeah, it's an inconvenience to park way out there.  But so is trying to get around when you're not mobile.  And honestly, sometimes I get to the point where I wonder if it's worth it to try to go out at all.

I know it is.  Aaron needs that.  He doesn't deserve to be homebound just because Mom gets tired of fighting battles.  What he deserves is to be able to enjoy the world, just like any other child.  

And by the way, it's $125 fine to park illegally in a handicap spot in Utah.  Maybe it's time to get our local police involved. 

“Accessibility allows us to tap into everyone’s potential.” 
― Debra Ruh

Wednesday, August 15, 2018

Summer Continues, Seeking Balance

Summer is almost over.  I can't believe it.  School starts in less than a week and I'm torn between needing my routines (and job) back, and mourning the loss of the lazy days where I wake on my own well before the alarm.

Aaron has been doing well, still getting out and about.  He had his scoliosis check-up.  They follow him about once a year.  Frankly, other than keeping appraised of what's going on, there's not much we can do.  But this visit was a positive one.  His doctor retired, so we saw a new one, but both she and her fellow were very pleased.  Aaron's curve has advanced, but only from about 40* to 44*.  Most curves over about 28* have a tendency to progress quickly, but his has been moving very slow.  That's a very, very good thing.  With his pulmonary hypertension, surgery will ALWAYS be more risky than doing nothing.  And because of his breathing issues, bracing isn't a good option either.  You know, the whole expand the lungs kind of thing and all.

We've also been working harder on his gait trainer.  In the past, when he's in it, he raises his legs, almost like, "hey, whose driving today?"  He's very content just to hang there in the harness and let everyone else do the work.  His therapist has gotten some braces though which make it so he can't bend his legs, ensuring that he's bearing weight.  We use them in the trainer for a while and then take them off, and he will try to push against the floor!  He's moving! Even if it's just a little bit.  This exercise also has the benefit of strengthening those chicken bones he calls legs.  Our bones grow and get stronger because of resistance, but his haven't really had any.  His lungs are healthier for being upright and exercising.  All in all, it's a very good thing.

On Saturday, we went to a family reunion at the "This is the Place" park in Salt Lake.  Among exhibits is a Native American section where there was a medicine wheel.  In the center is harmony and balance.  I try to find balance.  I know I get "off" a lot.  I forget to stop, or at least slow down.  I forget that there is more to life than just trying to make sure he's healthy.  He's a little boy.  He's got siblings, a family.  And in so many ways, he's more like other kids than unlike them.  He wants to play, to be with people.  He loves back rubs and movies and stories.  There's so much more to life than just doctor's visits and medicine.

Sometime I feel overwhelmed.  Like there is no way I can do everything I'm supposed to.  And you know, that may be true.  I can't do it all.  I'm not really meant to.  But if I'm wise, if I'm careful, if I look to God for my strength, I can do the important things.  I can be a mom, a wife, a sister, daughter, friend.  I can try to be in tune with all my children, be a mom to all of them.  I can reach for the student who is struggling and maybe listen just for a few minutes. (I don't get much more than that, I'm a substitute teacher.)

And I can find my quiet place, my quiet time, even for a brief period, and find my center, my balance, my soul, my God.  And draw the strength I need. 

Balance is not something you find, it's something you create. 
Jana Kingsford

Sunday, August 5, 2018

Processing: "Burying My Head in the Sand"

Sooo, that whole "processing" thing I threw out at the end of the last post?  I'm really not sure how that's going.

Either it's going really well, and I'm handling things okay, or I'm burying my head in the sand and pretending it doesn't really exist.  Probably the latter.

But since other than a few tweaks, there's nothing we can do, that may be the best option.

Here's where things stand as I understand them:

We visited with both neurology (seizures) and cardiology (darned pulmonary hypertension!) in July.  Seizures are somewhat well-controlled with his medicine, and we have wiggle room to go up if he gets sick or just has more for no known reason.  We can't do an MRI.  It's not likely to change the treatment and the possible knowledge gained isn't worth undergoing anesthesia ('cause you know ain't no way this monkey would hold still for long enough!).

Then cardiology wasn't awesome either.  I mean, it wasn't horrible.  There weren't a lot of changes, except I've seen signs that his pulmonary hypertension was progressing.  We've tweaked some medications, and I think he might be doing better.  But still, it's a shadow over everything, Every. Single. Thing.

And tomorrow we see orthopedics for his scoliosis.  Which I'm pretty sure has also gotten worse.  Scoliosis isn't just about the spine curving.  It's also the spine curving and compromising the chest cavity.  In other words, squishing the space the heart and lungs are supposed to use.  There are surgeries for this, but they're difficult, and remember, our kiddo and anesthesia aren't buddies anymore.

So yeah, that's the stuff I'm "processing" (or not).  But again, frankly, there's not a whole lot that can be done with any of this that we aren't doing.  We know, and have known, that his life wouldn't be a typical length.  So hence the "bury the head in the sand" coping mechanism.

Instead, we're getting out and about.  Daddy and the older boys are going for about two weeks, so Michael and Aaron and I, and sometimes another sibling are hanging out doing fun things.

We went to a Star Raising party for Ashton who is 18 (Eighteen!! can you believe it!) with T18.

We went to the Harry Potter Run and helped out there.  Aaron wasn't too impressed with the live owl or the huge snake, but he sure connected with another little boy

We went up to the Air Force Museum where we saw planes that Grandpa Brown and Uncle James have flown, visited with a man who served in one of the squadrons my dad served in, only 10 years early, and listened another tell stories about the Dolittle Raid in WWII.  It was fascinating.  Look it up.


We went to "Drums Along the Wasatch" to hear big brother Joseph play with The Battalion.  

Tomorrow, after his scoliosis check, we'll visit Temple Square and the Beehive House, wander around downtown Salt Lake.  Basically, we'll continue making as many memories as we can.

In addition to our fun, I've been cleaning out closets and drawers and mostly long overdue paperwork.  I found treasures from a couple little boys who've passed on and tucked them away.  Today is Chloe's 9th birthday.  Chloe is from Alabama and has Trisomy 18, and grew her wings just a few short weeks ago.  Aaron starts school in a couple more weeks.  He's still here.  We still get to do things.  His challenges are great, but so is his spirit.

We got this.  And on the whole, I'm thinking that my "processing" and coping mechanisms are doing okay.

"Carpe diem! Rejoice while you are alive; enjoy the day; live life to the fullest; make the most of what you have. It is later than you think. You only live once, but if you do it right, once is enough."