Choosing what’s most valuable.

I started my day with a Diet Coke and a handful of stale popcorn.  Breakfast of Champions?  Nope.  Breakfast of a Mama who has been dealing with what has been coming out of a certain Brave Hero’s nether regions since early this morning….yup.

Smelly stuff comes with Parker’s territory.   What’s a few wilted nasal hairs between family members, eh?

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We are still pow-wowing about Parker’s echo last week.  Not worse.  Not better.  Next time going to be sedated because this kid doesn’t understand the meaning of sitting still.  Totally typical for a Hodson boy.  I’ve got two more just like him.

Parker’s cardiologist is convinced that Parker’s PH is directly related to his lungs.  His trashed, chronic lung disease riddled, aspiration assaulted lungs.

Which means that I’ve got some decisions to make.

  •   Do I push to have Parker’s Nissen tightened?
  • How do we address the triggers that drive his allergies into asthma overdrive?
  • How do we best address the huge aspiration risk that is this beautiful kid of mine?
  • Did the ST that used a SYRINGE to squirt food down his throat during his last FEES squirt the stuff straight into his lungs?  It seems a possibility seeing as when we got home his trach nose was filled with that blue dye they use.
  • Should I just give up on the whole eating by mouth thing? Are those tastes worth the possible damage to his lungs?

This is where choosing what is most valuable  comes in.  Along with the hope and faith that the answers will come in time to make a difference.  The hope and faith that Parker’s doctors will have the inspiration needed to successfully address these questions.  The hope and faith that I can also share in that inspiration to know what is best for this Hero I love so much.

The funny thing about inspiration is that often you can’t really recognize it when your attention is being pulled in what feels like a million different directions.

Parker goes in on the 16th to have his ear tubes replaced, his sinuses cleaned out, his teeth cleaned and an ABR performed.  Nothing major.  Just some tuning up.

I have no real doubt that Parker can hear perfectly fine.  It’s just that every time we get him into an audiology booth he turns into the Grand Marshall of Goofball Central.

I was offered an amazing work at home opportunity.  Emphasis on amazing.  Except it’s proving to be more than my frazzled little self can take on right now.  I’m usually a quick study.  Not this time around.  This time the task is kicking my butt and I’m letting down someone who needs the relief to be able to attend to other parts of her business.

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It may be time to recognize my limitations and have the faith that my financial value to my family needs to be in the form of saving money rather than earning it.

That takes a lot of faith on my part.  I feel much safer earning money.   It makes me feel as though I’m being proactive somehow.   Perhaps the greatest value right now is in focusing on the smelliest of my crew.

I’ll freely admit it.  I have a beautiful life.  Amazing kids.  A husband that loves me and works so incredibly hard for our family.  Parents that support us.  Friends that support us.  A home that keeps us safe and protected.

Maybe it’s time I start giving more thanks and showing more faith, the value of which is incalculable.

When my water broke  6 weeks early I kept thinking that I should be asking for the type of steroid shot that helps an unborn baby’s lungs develop super fast.  I wound up being in labor almost 36 hours.  But each time I’d have the thought about the steroid shot, I’d find myself thinking, ‘well, if this kid needed one, the doctor would order it.’

The feeling of regret over not bringing up that topic was brought to life when they told us that part of Parker’s lung was sticking together and that they had to administer a lung surfactant to help with this issue, but that didn’t prevent one part of one of Parker’s lung being forever damaged.

Did I mention that we’ve discovered that Parker’s PH is directly related to his lungs and the damage therein?

I have this fear of being so distracted by other things that I’ll miss something important to Parker’s health.   I’ll dismiss a bit of inspiration, or not be in a position to recognize the whisperings of the Spirit.

Does anyone else ever feel this way?

I want to live my life in such a way that I am worthy to be led by the Spirit.  Worthy to receive the inspiration keeping Parker alive requires.  His cares are intense.  The skills needed to keep him going are nursing level skills.  He can and has gone from looking great to circling the drain in a matter of hours.

I need to have the faith to focus on what is most important and allow God to take care of the rest.

PS: My oldest son is getting married on Saturday.  MARRIED!  Wasn’t he always supposed to be that sweet three year old who, not being able to see over the kitchen counter top, would put his chubby little hand up and feel for the freshly made cookies I left within his reach.  One of my most cherished memories.

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Look at these two. This is a picture from their Bridals and Groom-als. Am I not going to have the MOST amazingly beautiful grandbabies?

Like I said. Blessed.

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. Thanks for sharing! The lung issues are tough! We were lucky with my Jayden and fixing his heart issue solved most of his problems. Good luck with the ear tubes and everything else!

    I know sometimes it’s really tough to hear the inspiration coming our way. Especially when there’s the little thing called fear and doubt in the back of our minds. But faith is a powerful thing! And not giving up hope is also very important! Sending good thoughts and prayers your way!
    Regina recently posted..Jayden is 5!!!!My Profile

  2. As Sally Clarkson says, “Sometimes you have to say no to a lot of good little things in order to say YES to the best thing.” Story of my life the last few years.

    Blessings and peace, dear friend.
    Alyson
    Alyson recently posted..Children’s Songs in Printable American Sign Language (ASL)My Profile

  3. I am new to your blog, but your family and story is amazing. Parents with special needs children are so incredibly strong. i know that as humans, we adapt to situations in which we find ourselves. However, as a Mom, seeing your beautiful child sick – can be like Kryptonite. You are epitome of courage, resilience and grace. What an inspiration. My prayers will be with you and your sweet boy.

  4. You certainly have your hands full! It’s so nice to have a wedding amongst all of your everything!!! You are going to have beautiful grandbabies!!!! Oh my!!!! xo
    taradara recently posted..Taradara Ranked 84th in the Nation – Leading Moms in Business!!!!!My Profile

  5. What a joyous occasion to celebrate and look forward to! They are a gorgeous couple. Congrats, you’ve done your job well!
    jenny – Sugar Loco recently posted..Banana Split Dessert for Two {Recipe}My Profile

  6. But he's so cute, I refuse to think he could be smelly :)