The Stinky Screwdriver

I work for a school district in the maintenance department.  One day, the plumber that I work with found a multi-purpose 6 in one screwdriver, driver, tool in a plumbing chase (a plumbing chase is the gloomy hole behind a battery of toilets (and a battery of toilets is multiple toilets next to each other)). It looks like this...

"Stinky"

So he pulled it out of where he found it an we proceeded to do somewhat of a victory dance because recently our tools have been spontaneously disappearing on us and this thing was EXACTLY what we needed.  So we asked around to see if it belonged to anyone and no one claimed it so it was officially ours, and I carried it back to the truck.  When I got there I looked at my plumber and was like, "What's that smell?? Did you do something?". And he said, "Nah bra...I don't smell anything!".  So I'm looking around and trying to figure out what stinks...

***SIDE NOTE***
Have you ever noticed how when something smells it's ALWAYS someone else's fault and never your own?  I would think that this has to be the biggest cause of white lies out there....

Anyway...so yeah I look in my pocket and pull out that screwdriver and WOW!!!

It STUNK.

Stinks.

Stank?

Stonk?

Yeah...I don't know what happened to it in it's previous life, but the one end of it that we didn't have flipped up smelled like a skunk vomited sulfur on it...this was my face...

Hoof Hearted

So I took the screwdriver out and cleaned it up and used every liquid I could possibly think of to get it to stop smelling, and eventually the stink diminished.  We have since dubbed that tool "Stinky" (because it still stinks, it's just more bearable) and we use it everyday.

So all that to say this.  I had a thought about "Stinky" the other day, and how someone threw him (I imagine the screwdriver is a dude) away probably because of his terrible stench and lack of appeal.  That stink took nothing away from the tools effectiveness or ability to be used, it just put it in a less appealing state of existence.

  I think about our lives as special needs parents sometimes this way.

My child was born into an existence and state of being that many find extraordinarily unappealing, and often will say...I can't IMAGINE living my life like that...but the thing is, that there really is no difference.  Our life is not some horrible stench to be cast aside like a smelly sock or something, but often I see it.....

It is LONELY being a parent of a special needs kiddo.  You develop this hardness and sometimes become aloof to what is going on outside of your household because you have to constantly advocate and fight for your child.  Sometimes when you talk to us we're just frazzled, or sad, or angry, and on top of that we have to deal with everyone telling us it'll be fine in the end....but the end doesn't come for us...

When you tell someone it'll be alright and pat them on the back and leave, that's it for you.  In your eyes the situation is resolved because it made YOU feel better by telling them that.

When you tell me it's going to be okay and then walk off, I have to smile, say thank you, and wave goodbye.  Then I have to comfort a daughter who is actively suffering and crying out in pain every night...

It makes us hard...

It makes us sad..

It makes us angry...

I know that sometimes we're not the most appealing and comfortable friends to be around, but we do still have a use, as well as a need to be used.

So to those friends and family that see us and know that sometimes we stink, but you love us anyway and let us love you, I say thank you!

And to the rest...well you're missing out...

Also, Aria has been dealing with a crazy amount of pain due to her dislocated hip, but she got a steroid injection yesterday and is doing considerably better.  We hope to continue on the road to a pain free Aria!  :)

Here's a recent pic!

Love you all!

-Salvador

Buying a gift for your child that they may never use.

Last year I really did NOT know what to get my daughter for her birthday. Her birthday falls on new years eve, so it's that weird time after Christmas where everyone is kind of still in Christmas mode and not birthday mode, so I always have trouble figuring out what I should get her, usually because I already gave her something awesome for Christmas.  So I was trolling the musical instruments page of Craigslist, when I stumbled on a stratocaster copy guitar that had Aria's name on it.  Literally, it was an Aria brand guitar, plus it was only $40!

This is what it looked like.

 So I started doing investigating and setting up the deal, when I had a thought...

My daughter may  never...
ever...
ever...
actually use this gift.

My daughter has cerebral palsy and is extremely spastic.  She also has CVI (cortical visual impairment), and honestly, we're not sure exactly how much she sees, but doctors have said as much as a very small amount of tunnel vision 2 feet directly in front of her face.  She does not have much individual control of her fingers or any extremity really, and the "control" she DOES have, is often caused by spasticity episodes.

So that was the issue.

Should I buy my child a gift that would be a milestone gift from me and I think is really cool, or would buying her something she may never use be an insult?

It's a hard question really...you know as a special needs dad I think about these things a lot.  I know that with most children sometimes you buy them a gift and they just throw it to the side and use the box, never actually enjoying the gift you gave them.  But this is different.  This (to me anyway) was almost like buying my wife some pipe wrenches and writing her name on them.  She will probably never use them, but I FOR SURE will...

On a side note, the funny thing about being a special needs parent is that there's a whole grieving process that comes along with it.  It's not grief because you don't love your kiddo or they're not living up to your expectations.  It's more like a sadness that you even have to think about things like this in the first place... and the world around you just continually reminds you that things for your family are different...

There's nowhere to park.
Everyone stares.
Education is costly.  Either by time or money.
You get used to being at the hospital.  No one should ever get used to being at the hospital...
People call you heroic, when you're just hanging out eating a cheeseburger.

Anyway so yeah that last one is especially true, but that's for another blog I suppose.

Back to the matter at hand.

I prayed super hard about this one.  I never want to be a father that makes it seem like my child should be something that they don't want to be.  So after much prayer and thought and asking a couple of people, I bought the guitar, gave it to Aria, and she had a really great birthday.

What this all really boils down to is this.  When you give someone a gift, there is NEVER a guarantee that they will use it, or even like it for that matter.  Gift giving is a choice made out of love for the person that you are blessing.  The bible says in 2 Corinthians 9:7-

So let each one give as he purposes in his heart, not grudgingly or of necessity; for God loves a cheerful giver.

Giving a gift is a representation of your character as opposed to the condition of the receiver.  I believe if you give any gift to your child or loved one with a cheerful heart and the intention of showing them love, then it can never be wrong.  These thoughts were what compelled me to proceeding with the purchase of this gift for my daughter.

So with that said, please consider these thoughts for yourself, and try not to beat yourself down over not being able to necessarily always identify with your child through objects.  After all, your love, discipline, and compassion will truly be what shapes their character in the end.

By the way, Aria has played on her guitar a few times and she loves it :)  and I later upgraded it so now it looks like this...

Changed design of Aria's name, and put an owl (she loves owls) , also added new grover tuners

Added new godin single coil pups, chrome knobs, and new pickguard, also  fixed electronics.

Much Love,

-Salvador

5 diaper bags that won't make you look like a sissy.

My wife used to have one of those newer lime green Volkswagen beetles, and if you have ever driven one of those things you know that right next to the steering wheel, there is a little vase to put flowers in.  Every time I would have to drive the car I would stare at those flowers and then take them out, put them elsewhere, and put a pen or something in there.  For those same reasons I believe that a diaper bag or wheelchair bag or whatever, should NOT always be a girly bag.

                                                                                                                                                                                     

This is my nightmare....

  My wife and I have carried around some form of diaper bag every day for the past 8 years for our daughter, and bottom line is that I shouldn't have to "change the flowers" every time I get in the car if you catch my drift.  The diaper bags function for us and for most people is to carry around the necessary items and or tools you will need to properly care for your child.

Imagine bottles and junk...how awesome is that!

Let me preface with this, in our bag we carry quite a bit of stuff including 4-7 diapers, meds, 2-3 bottles, feeding syringes, a small pulse ox, lip balm, 2 changes of clothes, 3-5 bibs, and more, so these bags are going to fit at LEAST that much stuff.

So with all that said, here are 5 diaper bags (and other kind of bags), that have worked for us, are functional,  will still be stylish enough for your lady, but won't make you look like a sissy.



1. Eddie Bauer® Medina Backpack Diaper Bag - Black/ Gray

This thing looks pretty cool and we found it at target.  It has insulated pockets and all that jazz, but on top of everything else it looks like a snazzy backpack.  Another thing to note is that sometimes your best option depending on your wheelchair IS a backpack, so yeah look out for this one and others like it.

Snazzy!

2. Jeep Diaper Bag-Black Micro Fiber Tote

Don't let the micro fiber thing fool you, this one is like the Juggernaut of diaper bags.  You can carry it over your shoulder or by hand, and it has this wire thing in it like tool bags or doctor bags have so it keeps its shape.  It also has that neat little cellphone thing so you can carry around a Nokia big enough to stop a bullet.  Bottom line is that I liked this one a lot but it was quite bulky.  It hung from our daughters wheelchair decently enough, but it still was at times too much.  Hey, it's made by Jeep so you know it's rugged!

Rugged!

3. Busy Breathers Oxygen Carrying Backpack

Not so much in the diaper bag category, but this one is really cool and if anyone asks you can always say the BB stands for big boss.  The Busy Breathers Oxygen Carrying Backpack, will hold most transportable oxygen tanks, and has a hole that you can thread the line through.  I heard his set up also works for a feeding pump if that's your situation.  You can find these at  http://www.busybreathersllc.com/  and pick up a pediatric pulse ox while you're there, those things really do come in handy.

Big Boss!

4. Dash Diaper Bag-SkipHop

 We currently use a variation of this bag, and honestly it's the best bag we have ever used for our situation.  Period.  The main thing for us about this one is the design of the handles on Aria's wheelchair honestly make it difficult to carry most bags on it, but the shuttle clips that are supposed to go on any stroller work AWESOMELY on our kiddos chair.  Another benefit of this bag is that it is smaller than most of the other bags we have used, while at the same time it just has a ton of packets and little nooks for you to fit everything into.  There are a ton of styles on this one, but get those shuttle hooks they're a life saver.

Awesomely!

5. Backpacks, messenger bags, fanny packs, totes, etc...

The bottom line when it comes to choosing the right bag for your situation is to understand just that...it is YOUR situation.  If a backpack works, use it.  If a tote bag works use it.  If a plastic bag works, use that.  Don't let the fact that you want your bag to match your nursery, your hair, and your shoes, influence the functionality of what you need to carry around for your little one.

The Situation!

Much love!

-Salvador

Hi!

My name us Salvador Arrona, and here are a few things you need to know

I am a C.
I am a C-H.
I am a C-H-R-I-S-T-I-A-N
And I do have Christ in my heart, and if everything goes well I will live FOREVER.

I am married to an awesome wife who I don't deserve.  Her name is Deborah Arrona and you can check out her blog here.

I am a dad to a little girl named Aria Magdalena Arrona who has some special needs.

My wife became very sick when she was carrying Aria and at 25 weeks into her pregnancy Aria was delivered.  Aria was 1 pound 4 ounces when she was born and that day was crazy.

I remember the second when Aria was born, she made this little meowing gurgle sound...and that was it.  We didn't hear her again for at least 2 months.  You see all these movies where they pull the child out of the mom and give them a slap on the bum and that kid just cries and cries, but what I heard (and Deborah still doesn't remember hearing it) was closer to a death rattle.  It was New years Eve.

Aria stayed 110 days in the NICU.  For the first 5 days Deb and I didn't get to see her.  We were so young.  I was 19 and she was 20, and we had no idea what was going on.  We would go in every day to see Aria, and just watch her.  The day they took her breathing tube out, we were surprised because no one had told us.  We just heard her little fussy voice.  We didn't take enough photos.

If your child is premature, even if things are looking grim, make sure you take A LOT of photos.

We left that hospital with oxygen, a pulse ox, and hope.

A pulse oximeter is the medical fields equivalent to nails on a chalk board.

Aria did okay for a while.  Eventually, she was spending too much energy eating and not getting enough calories. At 2 years old, a feeding tube was surgically implanted into Aria, and she began to grow and grow!

Now Aria is 8, and she has some special needs, (Cerebral Palsy, Cortical Visual Impairment, Epilepsy, etc..), but it's cool.  She is a really sweet and awesome kiddo, and we couldn't ask for a more well behaved child.

Here she is starting 3rd grade a couple of days ago!

So yeah, I hope with this blog, that I can reach out to some other special needs dads.  I am a plumber, musician, and have an awesome rugged beard.  So I probably won't always be really emo about everything after this blog, and hope to provide some manly insight into parenting a special needs kiddo.

-Salvador