Monday, June 12, 2017

Seven Trips Around the Sun

Tomorrow is Aaron's birthday.  Tomorrow he is seven.  Today he is six, tomorrow seven.  It's kinda mind boggling.  Yeah, I know that's what happens.  We've done it eight times before with our kids.  But this kid, this child, wasn't supposed to see seven.  Heck, he wasn't supposed to see one!

And he's going to be seven.  I waffled about doing a party for him.  Birthday parties around here have usually been fairly low-key affairs.  From about age four to the middle school years, we have a family gathering and a friends party.  Most of them haven't wanted to do the friends party after that, so it kinda dies down.

 Aaron, on the other hand, had the biggest party I think I've ever seen his first two years.  As time has gone on, it's gotten smaller, but still...  And then there's this year.  I had just about decided that we'd just do a family one on Sunday, like we do for the other kids, and be done with it.  But then, in the back of my mind was the niggling thought.  "What if it's the last one?"  "What if we don't get to celebrate eight with him here with us?"  And I just couldn't do it.

So tomorrow, his birthday, the day he entered this earth life, we'll have another party.  In comparison to his first few, it will be very low key.  But I'll get him a cake, and we'd love to have people stop by.  Come wish our miracle boy a happy birthday.  It's a blessing that so many children don't get to experience, and we're grateful that we do.

He's still here, he's still growing, he's still facing challenges.  We had a hearing appointment on Friday, a vision one today, and a comprehensive, all you can eat, multi-specialist one on Wednesday.  There's so much to talk about at that one.  We'll touch on his hearing results (moderately severe to severe without his hearing aid, none to mild with it), go over the eye results we get today.  We'll talk about his nutrition, his breathing, oxygen use, frequent steroid use, and of course, the seizures I've seen.  They'll weigh and measure my big boy, and we'll go over his many meds and get refills.  We'll talk about repeating his annual cancer screenings, and I'll have a rock in my stomach until we get them done.  It will be a long day.  But that's okay, 'cause he's still here.

I put a g-tube and trach in one of his stuffed animals
for his birthday present. He's not quite sure, but has
fun poking his finger in the trach.  Which is much better
than putting his finger in his own trach!
His birthday is always a little bittersweet for me.  I remember how blue he was when he was born.  They told me to "look quick, Mom" as they held him over the drape that separated me from the c-section.  And I recognized that he wasn't breathing, there was no sound coming from him, he was the wrong color.  All I could do was smile through tears and wave at them to take him, help him, save him.  They did, although it seemed like forever before someone said he was breathing.  My children were all there, in the hospital.  We didn't know if we got minutes, a few hours, or longer, and I didn't want them to miss out on seeing their little brother.  I also remember a sweet friend whose own baby girl passed the day before Aaron's first birthday.  And there's another little boy, not quite a year older than Aaron, who has moved on this weekend as well.

I love my son, I love all my kids.  Sometimes I miss the me who took for granted that babies came home from the hospital with mom, and eight year old birthdays always followed seven year old birthdays.  But I think with that new knowledge comes a desire to hold them just a bit closer, to cherish the memories, to try to capture the everyday moments that are so perfect in their imperfection.  

So join us tomorrow if you can.  Help us eat the cake so I don't try to do it all on my own.  And hold your kids a little tighter.  

The miracle of life is enough for me to believe in miracles.
Anthony D. Williams

Monday, June 5, 2017

Living Life

Aaron made it home on Thursday.  Between steroids, restarting his diuretic (don't get me started on that one), and simple Tincture of Time, he decided that breathing was an okay activity again.  And because the one thing we know we don't know is how much time we get with this little man, we needed to make some more memories.

So on Friday, we loaded up the big van and took everyone who was available to the zoo for Dream Nights.  We've been every year since Aaron was born and as always, it's a lot of fun.  For one night, the zoo hosts families whose children are chronically ill or have special needs.

There's dinner, face painting, characters, animals (duh) and lots of other families who fight the same battles day in and day out.

Aaron had a great time!  He was a giraffe this year.  Andrew dubbed him "Jeff, the Jaff," and claimed "Puff, the Wuff" (he was a wolf) for himself.  So he's been an orange tiger (twice), a dragon, a bear, a white tiger (I think) and then the giraffe.  His first year I opted out of doing the face paint.  Still too skittish.
Waving to the lions.

It was quite the feat getting ready to go though.  This is an "off" month, meaning we don't have to do two of his inhaled meds, so that part was easier.  He ate while we ate, and I gave him his meds, except the one I managed to forget in spite of all my planning.  Then while we waited in line for face painting, we did his inhaled medications.  All in all, I took up 12 different medications, 3 inhalers and 8 syringes pre-filled.  Yep, and that's a simple three-hour trip.  Gah...

That handsome Sousa player is mine.
Saturday morning brought a challenge.  Joseph marches with the high school and had a parade.  Who doesn't like a good hometown parade?  Local businesses, schools, candy, fun times!

Except while I managed to keep him "with me" during the sirens, there was also a military vehicle that was shooting blanks in addition to it's siren.  That was too much.  Last year the noise scared him and he cried.

Waiting for the parade to start.

This year he seized.  Seven minutes is a very, very, VERY long time to try to help your child.  I knew that EMS was right around the corner, but while his heart rate shot up and his sats went down, they were still within manageable limits.  And frankly, they would have transported him to the hospital, he would have been given some meds if he hadn't stopped by then, and they would have told us to follow up with his doctor.  We've already got an appointment with Comprehensive Care in another ten days, so really, 911 wouldn't have made much difference at that point.  (Although past ten minutes I would have enlisted help.  He just squeaked by.)

My cute tree hugger.

Saturday evening we had another picnic just a few miles down the road.  Michael thought the huge trees were incredible, and when we got home, Andrew decided to have some fun.

Aaron's big kids are just awesome!  I tell people Aaron has big brothers because they run with the wheelchair.  Mom doesn't even run without it.  He thought the spinning was the best thing ever!

And I'll put this out there in part because I use this blog to document and keep track of things.  Sunday night, Michael noticed that Aaron's pupils were uneven.  When he drew my attention to it, yeah, it was pretty obvious.  The right one was very small and non-reactive.  The thought is that it was residual from the seizure, or he had another one that we missed.  I'm afraid we're going to have to start chasing these things and try to figure them out.  I really, really don't want to deal with seizure meds.  There's not one out there that doesn't have ugly side effects.  But seizures in and of themselves are awful.  Just not something I want to think about.

And me?  Well, I've been trying to play catch-up on everything I was going to get done before he landed in the hospital.  I finally started making some onesies for Aaron.  He's about a size 7 and those things start at about $18 each for that size!  CRAZY!  I made him the floppy hat he wore at the parade.  The boys are creating their cowboy hats for trek coming up.  We got some vegetables and flowers planted, and are hoping the deer are willing to share the harvest with us.  I'm trying to get some kind of summer schedule put together for the kids here at home, and today I get to make an ice cream cake for Andrew, since he was supposed to have a birthday party last week, but yep, we were in the hospital.  At least it's only a week late, right?

So we're living life, sometimes sprinting, sometimes stumbling, as best we can.  A sweet friend put it so well when we were talking at the zoo.  She's lost two children, and a third is on hospice and not doing great, but he was there.  "If this is the last memory we get to make, at least it's a good one."  And we'll keep on making memories as long as we can.  

Memories are the treasures that we keep locked deep within the storehouse of our souls, to keep our hearts warm when we are lonely.
Becky Aligada