Apr 19, 2013


Reflective.  That's how I've been.

I wrote on Sunday and now it’s Thursday with no update about the hospital stay.  I’ll summarize it. 

Most of the days have been him getting a little worse each day.  Friday night he only needed extra breathing treatments to get him out of respiratory distress.  Then on to room air.  Saturday night he started desatting at 9pm and had to have breathing treatments and put on cpap by 3am.  Sunday he was on continuous cpap all day.  He didn’t sit up all day.  He was not himself.  And he had a crisis at 6pm. But the breathing treatment (aggressive kind he hates) worked.  Monday he was sitting up for about an hour.  Rest of the day was him on cpap round the clock.  We did do 2- 2 hour trials of him off cpap to see how he did.  Let’s say he did fine but I could tell when it was nearing the 2 hour mark. Tuesday he was almost back to himself.  And we saw the first sign that we had hit the worst of this illness.  Wednesday we hoped he could be off longer but nope, just 2 – 2 hour trials. 

We also moved to ICU on Wednesday.  Not because of decline, however.  The pulmonologist, ENT and I decided it was probably time to put him on BIPAP and that can only be done in the ICU here.  We wanted him close to baseline when we trialed this.  So it’s actually a good sign.  We have hope of a discharge plan coming soon. 

Our biggest obstacle seems to be that he cannot hang with just room air by day and I’m not exactly ready to put him on 24 hour a day bipap yet.  But it’s a possibility. 

So that’s the medical part.  (Well, most of it … there’s the never ending iron saga and some strange labs and some concerns I have along those lines.)

But mostly over these days I’ve been very reflective.  Last week … I hit bottom.  I feel like I’ve been juggling 1000 balls and last Wednesday, they all came crashing down.  I dropped them all.  And it was very hard.  I picked up a few on Thursday, hoping to be able to pick them all back up again but instead Thursday night further kicked my hiney.  By Friday morning, I realized I could not/would not pick them all back up again! 

I called several resources and reached out for help.  First was Mom to come by (I hadn’t even called, I think she just sensed it… Great moms are like that!)  She took all the other 5 kids so we didn’t have to worry about them for a day or two.  I then arranged for some needs of mine to be met (like the tooth and dinner).  And then checked into the hospital. 

In a very strange way, this has been a very needed rest.  It’s strange to even say it that way but I needed some down time.  With all the proverbial balls still on the floor, I didn’t feel the weight of the world on my shoulders.  I am being selective of what I will pick up and what I won’t.  (Or at least I’m trying to.) 

Here, there are no dishes, appointments, laundry piles, homework, etc.  Just Manny to care for.  And his needs, while scary at times, have been relatively minor this time.  He clearly needs to be admitted and they’re not in a hurry to rush him home so that’s given us the time to just “Be”. 

I’ve spent the time working on my long term plan.  I wrote in a recent blog entry that Dan and I had been told the philosophy of “don’t make permanent decisions based on temporary circumstances”.  But I had the epiphany that I was doing the opposite. 

What does that mean??  We hope Manny lives for a very very long time!  But nothing in our lives is set up like he will.  And that was a hard realization I just came to.  It’s all very temporary.  I have been living from crisis to crisis in survival mode.  But that’s been THREE years now! 

So this time has been well used.  Time to reflect on the big picture.  Time to make plans for the future.  A future WITH Manny. 

People say that I need to take care of me.  And that’s fair enough.  Afterall, I’m not living like I want to live a long life (sleep, exercise, good diet, fun, relaxation, etc).  Not planning on next week, much less next year or beyond. 

But the truth is … my needs are soooo minor compared to Manny’s that they just don’t get met.  Like if I need a shower but he is not breathing well and needs constant suctioning or he will stop breathing … uh … it’s not even a close call.  And that’s the way it is right now … if I meet MY needs, then HIS needs are not being met. 

That won’t work. 

So what will? 

I need ALL of his needs met.  They just can’t be met exclusively by me any more.  And when some of his needs are being met by someone else besides just me, THEN I will be able to do things for myself. 

This is why Kaley’s gift to me has been so amazing.  She gives me the gift every night from about 8pm-10pm by myself.  She is watching him and meeting his needs.  And if he needs something she can’t do, she knows what to come get me for.  But if I don’t hear from her, I know she is meeting his needs. 

Now I need that done at night too. 

When he is well, his overnight needs are very few.  Truthfully it’s no biggie.  4-6 times a night he needs to be repositioned.  That’s about it.  But on nights when he’s sick … it’s constant.  And if I miss one small detail, the outcome could be horrible.  So those nights are very very long. And those nights have done me in. 

I say all of this like it’s no big deal.  But the truth is … I now feel like a failure in some kind of way.  In my head I know better but this is a heart thing.  I’ve been in constant tears since being here.  I feel I’ve let him down.  But I know that I’m actually making changes that will enable me to take BETTER care of him.  It just doesn’t feel that way. 

I also keep hearing in my head, “You made your bed, now lie in it”.  We CHOSE this.  We did this on purpose.  Well, sorta.  So it’s like I don’t deserve help since I chose this.  But I know this is crazy too.  That’s no different than saying the person who chose to get pregnant and had a special needs child doesn’t deserve help and I know that’s not right.  But it feels like it in some weird way.

There are a million other thoughts like that floating in my head.  Where my heart and mind don’t match up.  And I’m going with my head. 

And with all this nicey-nice being said … there is a LOT of work at the end of this epiphany.  No matter how it shakes out, many things have to be adjusted and changed. 

Like what?  One thing is night nursing.  Starting Friday I asked to get the ball rolling with nursing.   It’s been a lot of talking to people, phone calls, etc.  And it’s just begun.  Still have to work with insurance and the staffing person interview and a home inspection and interviewing the nurses and writing out expectations, etc.  Then once we get all that set up, there’s still the fact that a person is in my house every night.  I don’t even sleep well when friends/family stay overnight.  So somehow that will have to change!  Then there’s the whole is Manny safe in their hands?  My other kids? Etc etc etc.  And if I let myself think about it, it’s overwhelming almost to the point where I don’t want to do it. 

And then I remember back to my feeling last week when all the balls dropped.  And I press on. 

Then there’s the whole thing about him needing a room/space.  Right now he sleeps in our room so I can hear him and reposition him and suction him and give him oxygen or whatever he needs.  But now he’ll need a room of his own.  And we don’t have a room.  We have a 5 bedroom house and all the rooms are FULL.  We’re busting at the seams of our house as it is.

Room one is Dan, Manny and me

Room two is Zoe and Kaley

Room three is Sam and Luke

Room 4 is Jacob and guest room

Room 5 is Dan’s office

The rooms are too tiny to put Jacob in with the boys really.  He could sleep in the living room but that’s not very private and it’s just awkward to have so many machines in there. 

We could do either of these short term, but not long term and those are my thoughts now.  We need to plan for the long haul!

So to me the only solution is for him to move into Dan’s office and for Dan’s office to move to the garage and the garage stuff to get sorted (tons needs to just go away and some in a storage unit we need to buy).  It’s the solution with the most work.  Dan’s office has a LOT Of stuff.  Garage is out of control.  Garage door needs to get repaired.  Etc etc

And again, the feeling of overwhelm creeps over me.  But I have to do something.  I need to plan for the long haul!  So must bite the bullet and suck it up and do it. 

Our time in the hospital this time is coming to a close.  And I reflect back on all the times we’ve been ready to be discharged.  There are times we’re exhausted.  Sometimes it’s a feeling of “why did I even bother going in”.  Times it’s been like I couldn’t get out of here soon enough.  And other times where I felt like we were going home too soon.  There were times I went home FRUSTRATED.  And other times hopeful.  And I’ll never forget the first time we went home (almost 3 years ago) where I had a DNR in hand and an appointment with hospice.

This time?  I feel like I’m going home to a new chapter.  It’s not been written yet so no way to know how it will go.  It’s very unfamiliar territory and I have no GPS for this trip.  But no way I can go back on the other road … that road washed out! So must trudge forward. 

And where is God in all of this?  That’s the strange part.  He’s still there.  My faith is not shaken.  I know He will provide.  He always has.  He will just be providing in a new way. 

New nurses will get to fall in love with this little amazing guy.  New people will have the pleasure of loving him and caring for him.  New people will know of his testimony and of his incredible zest for life.  Our world will expand. 

My goal?  To get some sleep.  Simple as that.  I hope to be a better mother because I’m not up 24 hours.  Maybe I’ll have some energy to play and live beyond just enduring and surviving.  Maybe I can truly participate in my life rather than just going through the motions like a zombie.  Maybe I can stop feeling like I’m 84 and feel more like 44.  (Because in my mind I’m still 24!) 

My goal is to try to see things in the long term … not super far like a decade out.  But say a year out.  Because for the past 3 years I’ve been seeing moment by moment and that’s about it.  SURVIVAL mode. 

And I feel this is a transition that’s actually challenging.  Not sure why but it’s a difficult shift in mentality and in my spirit.  I know that seems strange. 

The past week part of my reflection has also been to share some of the burdens I’ve been carrying.  I’m telling people (who can and want to help) of just what has been on my plate … things no one knows about.  I’m telling them of some of those proverbial balls that I was juggling that I’m no longer willing to pick up. 

And there will be fall out from this.  (enough said for now about that).

But sometimes you have to purge the old stuff to make room for new and healthy stuff.  I’ve been unwilling to share for a myriad of reasons.  But those reasons are no longer enough reason to stay silent.  I need the help and no one can help if they don’t know I need it. 

So I’m learning to say YES to receiving the help even though it’s embarrassing and hard and painful.  It feels like failure but I know it’s not.  (again with the heart mind conflict). 

Night nursing is the first step. 
Getting a permanent place for Manny to sleep is step two. 
Who knows what’s beyond that.  (those steps are overwhelming enough already)







  1. Praying for you Beth. I can only try to imagine the road you are having to follow. All I can do is pray for you. Know that I am always here if you need to talk. XOXO

  2. I don't comment often, but I do read and pray. It sounds like you're making some wise choices! I think I'll pray specifically for people to come help with sorting the garage stuff!