Balloon Thoughts

I am still overwhelmed by the outpouring of love to Manny via balloons!  We're figuring out a way to collect and share bits of all the celebrations held throughout the world for him.   Stay tuned.

I'm also overwhelmed that people are giving money for his adoption.  Out of 6 adoptions, this is the first time we've asked for money in any way but under the circumstances, we've asked to speed up the adoption and that means we've sped up the timeline of when money is due.  So thanks to those who have chipped in (on line, in person and via check).  Truly blessed.

Regarding the balloon releasing, three of the highlights that came to surface through the experience are:

1) A memory.  When I was 12, we "fostered" a little boy named Mark.  He was 18 months when this happened.  One night while out shopping, he saw what he thought was a balloon and asked for it.  (It was a sign.) Then in the store, it was full of "sale" balloons ... but none for sale.  He again asked for balloons.  We looked everywhere to buy him one but couldn't find one so we told him we'd find one when we could.  We left the store and saw 4 balloons floating way, way far in the distance.  He again shouted, "Balloon!!"  And of course we couldn't get those either!  But now we were on a mission to get that baby a balloon. 

We got loaded into the car, and started onto the freeway (in Los Angeles ... so very, very busy) and RIGHT in front of us ... I know it's hard to believe ... but those balloons floated right down.  Right in front of our car.  Seriously!  The tail wrapped lightly around a sprinkler head.  Dad slowed the car, Mom leaned out the passenger door and was able to reach them from the car.  Brought them into the car. 

We were so freaked out I seriously expected there to be a note that read, "Dear Mark.  Here are your balloons.  God."  This baby played with these balloons for over a week.  They never went down.  He then had to go to his other family.   The next day, the balloons were completely deflated.  

Completely true story. 

I've wondered over the years about those balloons. 

So as we released our balloons yesterday, I wondered where ours would end up.  Maybe OURS would be an answer to a prayer too.  Our God is big like that. 

2)  People we've never met are showing us how much they love us and Manny all across the globe.  I'm amazed at the collection of people God has put in my path.  I think of the movie "It's a Wonderful Life" and the line about being rich because he had friends.  Well, if that's the mark of riches, then I am a Queen.  I have amazing, Godly, giving, generous, funny, talented, gifted friends.

3) During one balloon release, there was a storm approaching.  Just as the balloons were released, they noticed a rainbow in the middle of the storm.  For those who know me, I'm the "metaphor queen" so I found that particularly inspiring!

3)  Several people mentioned having to start over with one or more balloons as one would pop.  (Even one of ours did ... seems to happen when a 7 year old boy puts a plastic knife on it. LOL)  But it made me think ... that's the nature of balloons.  AND life.  In a moment, it's just gone.  And thus a fitting tribute on so many levels.

Thanks for those who have participated.  If you didn't get a chance to but would like to, there's still time.

Love to all,

Happy Birthday Manny (part 1)

His actual birthday is today, June 26. But we're going to have our party (cake, presents, etc.) tomorrow when family could come. So today we did a lot of just hanging out.

We took pictures. We played. We watched the ways people celebrated him with balloons.

We had 2 different sets of friends stop by with balloons. (Thanks Rich and Elsa, Bruce and Snooks.)

Today was a good day. It was a day some said wouldn't happen. I'm so blessed that it did.

Funding Manny's Adoption

I'm finally breaking down and adding a "Chip in" button. We have $3000 left to fund Manny's adoption. His is a domestic adoption and therefore a lot less costly, but there are still costs involved.

We have had lots of people say they wish they could help in "some way". Truth is, right now this is probably the way someone could help out. To have this "bill" out of the way would be a relief for us.

The URL is http://www.chipin.com/mywidgets/id/e232b4eaa8f2bb07


So if you feel led, that's great. Even $5 is very helpful. If you would like to pass this along, that's great too. If you can't donate, no guilt intended.

Thanks everyone!

You really want to know? (a peek inside my head)

Most people ask me, "How are you REALLY doing?"  And I have a myriad of answers.  None of them completely truthful as I hold many competing thoughts in my head at all times.  So proceed with caution as you read this.  It's raw.  It's confusing. 

Every time Manny stops breathing, it feels like a little piece of me dies. 

When he sleeps peacefully, it wakes me up.  Why?  Because I have had this conversation with God - if You are going to take him, would you please take him peacefully in his sleep so he doesn't have to suffer?  And while that is what I want, many times every night I wake up and check to see if he is still with me. 

When he cries, I have to go immediately to him.  With a "regular" baby, I would teach him that he needs to wait sometimes.  But with Manny ... I never want him to have to wait for anything.  (That's not possible with 6 kids, but it's my heart to do it.) 

When one of my other kids needs me, I'm so torn.  I want to immediately help them because I don't want them to every be resentful of him, ever.  And they are great, but I don't want to take advantage of their kindness and understanding.

When Manny wants to play even though it's waaaay late and he should be sleeping (like last night at 10:30), I play.  I find myself not being able to say, "Go to sleep"  because ... what if. 

I find myself growing very tired of telling the same story over and over and over again.  Like today it was to hospice nurses.  And yes, they need to know the whole story.  Yes, they need to know where I am emotionally.  But every time I tell it, I feel I am re-opening a very raw wound. 

I have come to dislike the balancing act I watch people try to do for me (professionals mostly).  If I'm not "sad enough" they think I don't have a grip on reality and they say things to make me face reality.  If I show any emotion they try to "fix" me and put me back together.  I HATE both of those reactions. 

I am tired of people telling me how wonderful I am for doing this.  I don't feel wonderful.  I feel inadequate. 

OK ... enough confessions for now.  Baby is crying and I have more important things to do.   

Project for those who love Manny

Balloons.  Manny LOVES balloons.  Maybe it's because all kids do.  Maybe because they're light and easy to hold.  Or maybe it's because they can float around with no assistance at all. 

Saturday is Manny's first birthday.  And unless God intervenes in a quick, speedy, miraculous way (which is what we're praying for), this could be his only one.  And it's a miracle that he'll make it to that birthday at all. 

I've been asking for ideas for ways people across the country and across the world can participate in Manny's birthday.  And I finally got an idea that I love!  I hope you love it too.  

Balloons.  They're cheap and easy.  (We even got 100 for $1.)  So anyone can participate if they would like to.  We're hoping a lot of you will participate ... and even send the idea to your friends so they can join in as well. 

So here's the project.  Get a balloon (or several) and find a cool way to express yourself with them.  Like you could take one, write a blessing, prayer or scripture on it and release it.  Or just say one as you release it.  You could dress up in balloons.  You could create balloon animals.  Be creative.  Be meaningful.  Whatever you choose.

But the key is ... if you do this, please take a picture or video of it and send it (or the link) to us.  If you say a prayer, blessing or wish for him, please write it and send it to us.   (goredan @ hotmail.com)  

We will put them all in a collection for him.  

Looking forward to seeing what you all come up with!   

 

Our last few hours

By now, most of you have probably heard about our scary episode tonight.  Manny was a little "off" today but not horrible.  About 6:00, he started doing this retching thing.  In the past, it's a few rounds of it and it's over.  During it, it's a bit scary.  And it's hard to describe so I even took a short video of it so I could just show the doctors what I'm talking about.  He sweats profusely.  He falls over exhausted.  Then, usually in about 5-10 minutes, it's all over. 

He did this for about 20 minutes and was having a hard time staying awake - even though it wasn't time for him to sleep.  It was only 6:30 and he had a good nap.  So I went through his bedtime routine to get his meds and treatments done, just in case he went to sleep for the night.

While I was doing that, Dan came home.  That's a pleasant surprise.  He's never home at this time of night.  He got off early to come home to go jogging with the kids. (He runs while the older 4 ride their scooters.)  But JUST as he was walking in, there was a lot of lighting.  So he stayed home.  Then he realized it was his night at the Church prayer center.  He was going to grab a bite and head out. 

But during all this, Manny kept retching.  It was getting worse.  So I got out his pulse ox machine to see how low his oxygen saturation was.  Sure enough, it was low and his heart rate skyrocketing.  So we put him on oxygen.  

He couldn't stop the retching.  He couldn't catch his breath.  Even with Oxygen on, his saturation level was only 87 for a loooong period of time.  And dipping from there. 

There's this moment in the middle where we discussed whether to call 911 and what they could do.  But eventually decided to just skip it.  Why?  Because he's DNR anyway.  Even if he coded, they would do nothing.  Nothing they could do.  So why call?  For 2 hours this lasted.

So we sat there.  Praying. 

I cried. 

Then I realized I didn't want to do this alone so I posted a quick status update on FB via my phone. 

I went and got each child, one at a time, to come pray for Manny.  Then I put them all to bed.  Meanwhile, Dan was holding him and praying for him.  (God soooo orchestrated that he was home tonight and not anywhere else!  I needed him here for sure and God knew that.) 

Nothing changed in the natural, but all of a sudden, he stopped retching/gagging.  His oxygen levels went to 97-98 and stayed put.  (sigh)

That was an hour ago as of the writing of this and he hasn't dipped below 96 since then.  PRAISE GOD! 

Terror.  It's the only word to describe how I was feeling. 

Now as I watch him sleep right beside me ... he looks so peaceful, so perfect. 

And I just want these moments to last forever. 

We're OUTTA Here!

Doc just left and said the labs look decent.  His CRP (an infection indicator) has gone down.  It should be less than .5 and his original one was almost 3.  But now it's around 2 so it's headed in the right direction.

His wound site looks amazing!  So happy with that. 

He tolerated his feeds well all night long so that's great too. 

The rash is continuing to spread all over his body.  I was concerned that it might be a drug allergy.  (If any of you have been following me a long time, you'll remember I have HORRIBLE drug allergy reactions to antibiotics so when his popped up, it came to mind.)  But the Doc who came by in the middle of the night didn't feel it was.  Phew!  She thought it was just part of the staph and cellulitis. 

And his skin is like paper now.  It's so hard to pick him up lest you leave a mark on him. 

They cultured his wound and found it to be a staph.  But during the night last night, it started growing something else as well.  So he has TWO infections.  The antibiotic he's on is clearly working but it's only in an IV form.  So she is having the lab test which oral meds kill BOTH of these infections.  She said that will take several hours.  So we'll likely go home late afternoon. 

Can't believe I'm typing those words! We're going home.  Waaay earlier than anyone expected.  At one point, it was so bad they were using the words "Life threatening".  For whatever reason, I just didn't *feel* like this was going to take him out.  I know all the prayers were going up and I had a peace that he would recover.  (But of course there were also moments of aaaaaaauuuuuggggghhhh!)

So on this Father's Day.  I have 3 Fathers I would like to pay tribute to.  My earthy Father, Ben, AKA "Papa" is a kind, loving, wise, generous man.  I still can go to him for anything and he is there for me. 

My husband and father of our 6 kids, Dan, AKA "Daddy" is a warm, loving, compassionate man.  He has been holding down the fort at home with the other 5 so I could be here with Manny.  He is a wonderful soulmate.

My heavenly Father, AKA "Abba" is a powerful, loving Healer who has granted me with all the blessings of my life - including my kids.  And He has seen fit to let us spend just a little more time with our newest blessing, Manny. 

I am most blessed.