Saturday, May 19, 2012

Today we met Sam

The novelist who secretly resides in my brain , the one who turns even the most mundane daily tasks into intriguing scenes waiting for publication, was working full force today.  He (I like to think my imaginary author would be a he... not sure why...) was holding a full fledged debate on the practicalities of this venture we were about to undertake, casting doubts about the amount of people in Target and Chick-fil-A, the looks we would no doubt get (both curious and empathetic), and even the unrealistic mean things strangers would say or think.  He held articulate arguments of why it is just too much to get the wheelchair out, then back in, then back out, every time having to take it apart.  It's just not worth it.  Luckily, when someone tells me I can't do something, I get even more determined (thank you mystery author-man).  If only you could read the on-going biography in my head... it sounds so much better in there, never quite translates onto paper as it should.

So, there we went, 4 kids, a vent, oxygen, and a nurse, out on a trip to Target.  I could feel some looks from other shoppers, but not as many as expected.  I didn't make eye contact, just felt a little weird I guess.  Mr. uninvited author chimed in mockingly "wow, look at that lady with 4 kids, and all so young, doesn't she know where those things come from!  Oh and look at that one, how sad."  To which I secretly replied "shut up brain-author man."  He was making things out to be much bigger than they were.

After our expedition around the store to gather a few necessities, we loaded back up in the car again and I sat in the front seat, already tired, a bit defeated.  It was 1 o'clock and the kids hadn't eaten lunch so I was going to drive through to get them some grub.  While in the drive through lane Jake said "but Mom, aren't we going in?" (dang that playground in there!) in his best pathetic voice.  Alright, he got me.  So, piled back out and in to the restaurant we went.  I felt some looks, but thankfully my sister was there with her kids!  I went to a table and parked our brood when the man sitting next to me looked over and said "my son had a trach, he just got it out last month."  Wow.

Up walks Sam.  Sweet, sweet Sam.  We introduced Sam, who is 3 years old and smart as a whip, to Dominic.  He stood and looked at Dominic curious, wanting to get ever closer.  We let him get in right next To Dominic.  He, whom himself has some physical abnormalities and other problems, innocently asked "what happened to him?"  That's why I love kids, they'll say what adults want to say, but won't due to unsaid societal rules.  So, I explained all about Dominic, how he can't breathe well so he has the trach (just like Sam used to), showed him the vent, which he thought was super cool, showed him our emergency ambu bag that he squeezed and squeeled "I've got one of those!"  I told him he was just like Dominic with his glasses and showed him the hearing aides.  Explained what the wheelchair was and what it was for.  My sister was trying not to cry, so was I.  I did a better job than her.  For about 10 minutes, Sweet Sam just looked at Dominic, who for the first time since we left the house rewarded him with a big grin... almost as if he were saying "hey, you're in my club!"  Like he knew someone just like himself was standing there.

After Sam left, my sister, a softie at heart, had to leave because she was crying.  We both saw the future for sweet Sam, one of the small ones of God.  I saw how he would overcome many hardships to become something great, someone who would do good in this world.  It would be through his many trials in life, with shunning from society for his deformities, that he would grow strong and courageous, determined to make a difference.  I saw his Dad, who like me, felt alone but thankful.  A quick chat amongst us revealed a certain knowing that only us parents with these special kids can recognize, or ever possibly understand.  A certain undercurrent of pain mingled with hope, uncertain-ness, joy, and worry that is ingrained in all parents at the moment a little life enters into it's mothers womb.

I gave him my number, maybe one day Sam can come play, can play with my big boys and be close to a kid just like himself.  I would say this outing was a success.  Thanks Sam.

Friday, May 18, 2012

New Eyes and Ears

Caution all you parents of baby girls!  There's a new hunk in town, sporting his new eyes and ears.  He is sure to woo any unsuspecting drool-maker with his handsome looks and winning smile... the glasses and hearing aides just make this little man that much more irresistible!  (We can not be held responsible for baby-crushes).

We are getting used to the hearing aides, which we have had for a little over 2 weeks now, and are trying our best with the glasses, which we have had for a little less than 8 hours. He wasn't too happy when we got either one, but in time, he has adjusted to the hearing aides and we are able to see a difference in how he responds to sounds.

Camo for Daddy.   The bad part is we loose him all the time now ;)
The glasses were not a fan-maker for the first hour, but as soon as we got home and I laid him down on his little mat, he started smiling and looking around. It actually looked like he was focusing on things, and enjoying them! Amazingly enough, he hasn't tried to pull them off too many times, and tolerates them sitting on his nose well. Enough with me blabbing... here's what you really want to see...
S.W.E.E.T.E.S.T. boy in the world!

learned my lesson... next time get the anti-glare coating... doh!

Thursday, May 3, 2012

Best 10 things about our ICU stay

Last night we got home from a 26 hour hospital stay, not that I was counting, to get a 24 hour video EEG done to check for seizure activity.  Because our sweet man in on a vent he can be admitted to only 2 places in the hospital, the TCU (where we were for months after the trach) or the ICU. This time we were in the ICU (oh, how I miss the niceness of the rooms in the TCU).  Our room had curtains, not walls, which makes a hospital stay even more interesting. Here is the best 10 things about our stay in the ICU:

#1.  You have countless opportunities to work on being kind.  Sometimes you fail, like when I told the sweet night nurse, in a less than kind way, that my son's name was Dominic, not Dominique, then followed up with a quick "he's not a black girl." 

#2.  You have even more opportunities to swallow your pride and apologize... see #1.

#3.  You learn to be gently assertive when questioning medical authority.

#4.  Your neck gets a work out when your sassy girl surfaces after the said medical authority proceeds to tell you she has worked there 13 years, how dare she be questioned. 

#5.  You learn when to stop talking about why said authority must be questioned (see #'s 3 and 4).  This realization is usually gained when you notice the stares of surrounding nurses and parents, all of which are looking a bit uncomfortable.

#6.  In case you had one of those rare wonderful high school experiences, you get to re-live it when you shower with your flip flops on in the community showers, just in case, in the most rarest of cases, the cleaning staff didn't get all the "fungus among us" up off the shower floors.  The water pressure is awesome though...

#7.  You learn humility as you watch your waistline expand from the tasty hospital food.

#8.  You get to go shopping to accommodate your new muffin top! 

#9.  You exercise creative thinking as you imagine the choke hold you'd put on the phlebotomist when getting blood from your sweet baby.  This is usually always followed by a wave of self control by swallowing that motherly instinct to deck the sweet lady poking your baby.  repeatedly.  then digging around.  then to the other arm.  wooo, finally got it.  oops, hope it's enough.  Sigh.

#10.  You learn alot about yoga, nursing school, tattoos, tv shows, and current fashions from overhearing the nurses conversations (remember, no walls, just curtains) when you are doing the feeding and caring for the patient.  It's all good, I would do it anyway, which is probably why they don't even try most of the time.  Poor things, they just can't win.

Though all of this did happen during these 26 hours, I must say that the real positive to being in the ICU is you get to see that you're not alone (babies and kids on vents everywhere).  And you get the sharp realization that no matter how bad your kid has it, there is always someone who has it worse.  At least my baby smiles and is full of life.  And I get to bring him home.  It's hard to count your blessings sometimes, especially when the stays get long, but when I get down I just look around and know I'm in good company.  Other parents all around us, so close, but recluse in their little curtained space keeping vigil.  And on rare occasion, you connect and exchange a fleeting second of knowing.

Here's to no more stays for a while.  Amen.

In Jesus and Mary,

Sweet man getting his weave on... not happy about this!