Life Starts Now.

Living each day to the fullest, because we know first-hand just how fragile life can be.

Saturday, November 26, 2011

Being Thankful

is hard some days.  Our finances are upside down, I'm working while my husband is unhappily home with the kids, we're living in a 2 bedroom apartment when we're used to a house 4x's its size....

But the moment I sit and think about where we are REALLY, without the temporary frustrations of the day, I am so thankful.  This is a season of regrouping.  Re-honing in on who we are as a family, refocusing on the three children that were put on the back-burner for the last 20 months, and the marriage that sometimes hangs on by threads of promises.  We will overcome our tough times.  We love each other.  We are healthy.  Each season is filled with lessons to be learned, and knowledge to be absorbed.

I am thankful for a job that I love.  It's outside of my comfort zone in so many ways, and I'm doing well.  The hours are flexible, and the pay got us a home.  It makes me value the role of a stay at home parent.  I miss doing crafts with my kids, and drinking tea during naptime.  My job has allowed Adam to see what I go through, day in and day out; he is understanding that the difficult part of a mom isn't the same 'difficult' as a job outside the home.  Seclusion and repetition are difficult in a different way.  And although our roles are temporarily switched, I think the process of that has helped us have empathy for one another...and that's really hard for me.

I am thankful for Sparrow Club.  It is a light in so many ways.  It's helped provide for our family and at the same time, made us feel that we're making the difference in the lives of kids in our area.  We purchased a kitchen table with some of our Sparrow money this week (we had to sell our old one b/c we knew it would be too big for a small apartment.)  Having a kitchen table helps reinforce the routine of eating for Joel.  He's eaten more in the last 3 days than he has in a normal week.

I'm thankful for my parents.  They've helped us so much since we've been here.  I can't imagine not living in the same town as them.  They love our kids unconditionally, and they are very involved grandparents.  We lived with them for the first 6 months in Medford, and they were more than welcoming.

I am thankful for the Foo Fighters album 'In Your Honor.'  Music has always played a big role in my life, and it plays a significant role in my coping as well.  It's helped me get through the past year when I needed it most; healing wounds I didn't even know needed healing.  I had to go to the Ronald McDonald house a couple of weeks ago.  I think I had an anxiety attack.  I cried so hard that I couldn't breathe.....why?  I didn't know that staying in a group home for one night would evoke that much emotion.  Thinking of the treehouse right now doesn't make me sad. But that night, listening to that receptionist tell me which locker was mine, how to label my food, and where I could check out books was enough to make me breakdown.  I still have a lot of healing to do.  I'm so grateful for songwriters like Dave Grohl.  He knows just what to say, and every time I sing along, it gets a little easier to uncover those memories and deal with them in a healthy way.

I hope all of you had a great Thanksgiving.  We went to Coquille, where we attend our annual Thanksgiving dinner at Neema's house.  We laughed, we ate, and we watched our kids do the same things we once did.  It's amazing to me being in a house with so many memories.  My dad grew up there.  I grew up there.  And now our babies are playing there; eating up to the same table we once did.  Riding bikes around the same sidewalks, swinging on the same swings.  <3  Love it. 

One of my favs.  Luckily we go with professional pictures every year, or this is what we'd end up with. 

HAHA  He may have liked the sweet potatoes, but he's still unsure of aunt Tana!

Sunday, November 13, 2011

The Boy With A Bottle

To set the scene, let's start by saying that I've had someone recently tell me that "kids like Joel don't comfort eat.  There is nothing comforting about putting something in your mouth after you've been intubated for long periods of time."  And: "He doesn't understand the correlation between being hungry and putting food in his mouth.  That was interrupted when he got his feeding tube."

That just didn't seem right to me.  (Now I'm not trying to pat myself on the back here, but I'm just trying to prove the point that mothers know their children best...)  I know that there are some very true facts up there.  I'm just saying that they don't apply to us.  I believe that with hard work and prayer, we can overcome that.  This woman did not.  We have been faithful to keeping Joel with his binkie.  At 20 months old, he still can't keep it in by himself, but he definitely uses it for comfort.  He is able to drink from a sippy cup, a regular glass, and he can suck out of a straw....but he'd only tried a bottle once, and it was months ago.  When we were unpacking the house, I found his bottles in a kitchen box.  Immediately it stung like a bad memory....they were things I remember purchasing while he was in my tummy.  Just preparing for our new baby, not realizing at the time that they wouldn't end up being used.  I've looked at those unused bottles countless times over the last 17 months...

I put some pediasure in one of the bottles and handed it to Joel, thinking he'd have fun playing with it. But he drank it.  All of it.  It took all day.  FOR REAL.  It took him 24 hours to finish that 4oz bottle.  But he did it.  And that was 120 calories that we didn't have to try to get him to eat.

Today, we got 320 calories. :)  I think we're onto something here...

This has been tough.  We have tried every single day to get our son to eat since Joel was 10 months old.  We've gotten creative, and tried new things.  I've read blogs from other moms for inspiration.  I'm continually scanning the grocery stores for new products that are calorie packed that Joel might like.  We try, sometimes to get zero progress for the day.  But THIS.  This makes it all worth it.  This is reassurance that I know my son best, even when I'm told the opposite.

A Postponed #13

means many things.  On Thursday, Joel was scheduled to go in for his 13th surgery: closing up his trach stoma.  It was different that the other surgeries in that it was supposed to be his final surgery.  FINAL.  As in no more.  I can't put into words how momentous this surgery was to me.  I want so bad for the next chapter in Joel's book to be one that didn't involve checking into hospitals, and I thought we were there....

But we're not yet.  Joel had a cold, (which he has now given to me...) and it prevented them from feeling safe performing the surgery at the scheduled time.  And it makes perfect sense; who wants to have their neck sewn shut and then have a cough on top of that?  Ouch.  The risk of him blowing out his sutures was high, so we went back home.  (On a side note, I called in advance to let them know he had a cold, and they said he would be fine...that was before we drove 5 hours to get there.  That's another story.  One in which I yell obscinities about OHSU, and I don't have the energy to do that today.)  So we're waiting until cold season is over to have his lucky #13.  And until then, we wait.  I mean, what's another 6 months with a hole in your neck, right?