Sunday, February 10, 2013


This is liable to be more of a ramble, and possibly not make a lot of sense, so you've been warned.  But then, I'm not sure if anyone besides other special needs moms really read it, so it may make perfect sense to them.  

It's an interesting dichotomy I find myself in.  Aaron has had three Christmases, three New Years, two birthdays.  By all signs, he's doing so very well.  We've had all sorts of yuck running through the house including two different cases of influenza.  Aaron?  He just keeps on keeping on.  Not even a cough or sniffle in sight.  (I hope I haven't just jinxed myself.)

His hair?  Yeah, that's been kind of out of control lately.  Part of me says, so what?  But then the part that's trying to fasten his trach ties behind his neck, and keeps getting them tangled in that mop, says, time to cut that stuff.  So today we did.

And like most of my other boys, he wasn't real impressed.  Unlike the others, who just grump a little and go along with it, he told me in no uncertain terms that it was not his cup of tea. 

Then, because he had hair all over, he got a bath.  Yeah, talk about adding insult to injury.  Poor baby.  I think he may think he's Goldilocks at the Three Bears cottage.  Last bath was too hot, this one, too cold.  Hopefully next time mama will get it right. 

Maybe if I hold real still, and
don't make any noise...

She'll leave me alone and not
do anything else???

Here's where it gets kinda strange, or whatever.  As I was shaking out the towel that had been around him during his haircut (and there was a lot of hair!) I wondered, what if this is the last time I get to cut his hair?  I don't know where that came from.  Or actually, maybe I do. 

See, there's this big goal, this hope, this dream, for babies like Aaron to make it to their 1st Birthday.  And yes, it's Birthday, with a big ol' capitol BBecause so few make it that far, it's a HUGE milestone.  For me, it was all the emotion and adrenaline of giving birth.  So after that, everything should be great, right? 

Um, no, not really.  See, just two weeks ago tonight, a sweet five year old girl started coming down with a cold.  Her mom hoped it wouldn't be too tough to fight off.  Just over 48 hours later, Olivia earned her angel wings.  Oh, I ache for Tara and her family.  And I'm scared for me.  I admit it.  It's selfish. 

It doesn't help that Aaron's been a bit wonky himself lately.  They're not big things, and if they weren't new, it wouldn't even be a blip on my radar.  But for the past week, if he lies down flat, he drops his sats.  Again, not a lot, but enough that I'm trying to figure out what's going on.  I've put in an email to his trach/vent coordinator at the hospital.  And yes, it's an email, because I'm pretty sure it's not a big deal, at least not yet.  I've also put out a shout-out to other moms in similar situations.  There's been some good feedback, some reassuring, some reinforcing concerns. 

It could just be gas.  We all know how good that feels, but if it is, why is he all of a sudden struggling with it?  It could be his heart, his lungs.  It could be as simple as he's outgrown his trach size.  Whatever it is, it's got me on edge.  Not quite the edge of the cliff, but I can see it, and feel it.  And I've never liked heights. 
Sleeping peacefully, on just a little bit of an incline.

He's also starting the transition process from Early Intervention (those that have been providing all his therapies so far) to the public school system.  Yeah, my baby goes to school next year, crazy.  It's a brand-new world for us, and while it's going to be a really good experience, it's also different.  Another post, another time.  

So there you have it, if you're still reading this.  So much going through the brain.  Plus, it doesn't help that we didn't get a letter from David this week.  I know he's fine.  If he wasn't, someone would be in touch, but still, it would be nice to hear from him.  Please keep us in
your prayers.  I know we're watched over. 

Every possession and every happiness is 
but lent by chance for an uncertain time, 
and may therefore be demanded back the next hour.  
~Arthur Schopenhauer 


  1. I don't think it is unusual when a little one is sick for his sats to vary depending on position. Have you had an x-ray?

    Personally I'd homeschool Aaron. But that's me.

    I'll call tomorrow and put your name on the Temple roll.

  2. My dear sister!! It is hard when we get those premonitions and we hope beyond hope to truly understand what it is that they truly mean.....Is it actually somethinhg else??? I have to say having been in a car accident in June and having had a closed head injury with my two eldest(ocd and bipolar with schizophrenic tendancies)up in arms with me and one another and my two youngest (autistic and low tone)I was so confused. I couldn't understand what I was learning and was told in my blessing it would take a long, long, time but the medical personel would be able to help me and my older sons and my family would start to talk to me and my older sons would return to the gospel. So I thought waiting, I can do that.....I have had to move in with someone to help take care of my kids, I have lost friends, I have lost all of my savings and the Lord has provided for me. But, what was I to learn?? A few months ago I recieved the blessing to be fully healed with surgery, but no one would do the risky surgery to fix my chiari malformation and cervical spine!! So I moved, changed my autistic sons preschool, my low tones therapists and kept smiling and saying, it is all for something, and God has never let me down. I have been divorced for almost 2 years and have been fairly well adjusted, dating here and there but not really being sure of a relationship and praying to follow His will in my life and going to the temple every month. Last night I sat and talked with the wonderful man I have only been dating since I moved and as we discussed the upcoming surgery and finding a surgeon he was telling me he is shaving his head to and I had my first kiss in almost 2 1/2 years. Today I stand in awe, I asked for help and to find the man HF would want me to be with and all of this happened to meet Greg. Heavenly Father moved Heaven and Earth for my own happiness. He has made these crazy events happen to fulfill my dream and listened to me rant and cry asking why I had to be going through this when he did it for me. He took the bad guy hits to help me. He has a purpose for Aaron and whatever happens, I hope it is for Aaron to be here a good long time. I also hope you will know you are not alone and as long as we stand together it will all be well.