May 28, 2010

Tight Rope Walker

I know if I were you, I'd be wondering what was going on in my head right now.  While I won't share it all (you might call the looney bin on me), I can tell you some of my thoughts and feelings.

I feel like I'm walking a tight rope and if I tip to one side or the other, tragedy will happen.  I know it's not true.  I know that I, Manny and my family are safe in the palm of God's capable, loving hands.  But it FEELS like it.  I don't feel like I have to be perfect or "get it right" but I do feel like there are some choices that have worse outcomes than others, some that leave bigger scars. 

During the day, I try my best to keep it together.  I go about my daily life like all is fine.  And then I run into these IDIOTS (I don't use that term lightly) who have no clue and say hurtful things.  I Know they don't mean to hurt but they do.  Like yesterday, I was in the doctor's office with Manny.  He was asleep so he was on oxygen.  I sat quietly minding my own business as to not have questions.  When she asked how old, I simply said 11 months and went back to thumbing through  magazine.  I knew it would not end there. I knew she would push the conversation until SHE felt uncomfortable and I was trying desperately to avoid HER feeling stupid. 

One question led to another and each time, I answered matter of factly.  She even felt the need to tell me we had the wrong type of oxygen tank.  That a baby this small should have the small type.  I told her it was about how much oxygen was needed and he needed the full size tank.   I'm feeling judged by this stranger on what type of oxygen we use!  Ugh

All the while, I knew what she really wanted to ask was why he was on oxygen.  I could feel my patience for her waining.  I even got up to walk away so she would get the hint that the conversation was OVER ... but she pushed it.  "He have asthma?"  no.  "He have cystic fibrosis?"  no.  "Why DOES he need oxygen?"  And as I said it, I knew she would feel like a complete a$$ but she wouldn't let it drop so I told her.  "He was just diagnosed with a terminal brain disease.  Kids with this die of respiratory failure.  So he needs oxygen." 

I could hear the breath leave her body.  She sat rigid in her seat and barely took another breath.  We sat in silence for another 5 minutes or so until her child was called to be seen.  I'm sure she was relieved by that.

And of course I felt bad for her.  (I know most of you will say I shouldn't have ... but the truth is ... I did.) I don't know how to stop the conversation yet.  But I'll learn.  "It's none of your business" doesn't seem quite right but it's actually the truth.   See?  I fell off the tight rope yesterday. 

A long time ago in America, people would wear black arm bands to signify a morning/grieving period.  It gave people the heads up to be extra careful with this person during this time.  I kinda wish we still had that.  I would wear one.  Then again, this kind of woman would have asked, "Why you wearing the arm band?"   So I probably couldn't win. 

But as I dusted myself off and got back on the tight rope I learned something.  It's going to happen.  I AM going to fall off.  I WILL get some of this journey "wrong" or wish I had a "redo".  But I also know I'll get a lot right.  And I don't want to miss one step of this journey. 

Yesterday he had a very, very bad day.  He was having a lot of symptoms and it was very scary.  But today, he is a little more back to himself.  He was laughing and smiling at me.  And it makes every part of this journey on my tight rope worth it.


  1. Hello My dear friend. I am so sorry you have to go through all this. He is such a precious baby boy and I know you love him very much. I understand a little of your pain when my son was diagnosed with cancer I thought life would never be the same again. God and our family saw us through the tough and good times. You have so much more strength then you realize...You and your family are such dear sweet people. I am praying for you all..


  2. oh mannah. What else could you have said?? I just don't know. I bet you helped that lady learn not to ever be that pushy again though. Give your precious lil man a gentle squeeze from Auntie Marjorie for me.

  3. Our family is praying for Manny and for you! We "happened along" to your blog by accident - or better yet - by God's will, and I am so glad we did. Your son is an absolute precious gift. You are an amazing mother, Beth. Manny knows how much you treasure him adn he is not alone. You are a true inspiration to us. We are first-time adopters - a special needs child from the Ukraine. We will keep you all in our prayers.

  4. Oh!!!!! How much those comments must have hurt. I remember when we first had Georgia (in China still) she was VERY sick (could have died at any moment with a Tet Spell which she was having all the time). There was a guy in our travel group who would come over every time he saw us and loudly say, "Oh is she one of those blue babies...she doesn't look good...will she die?" I am not kidding you. EVERY time the group got together he would do this and I never knew how to answer so I would steel myself for it and then cry afterwards because the reality was yes, she was a blue aby and yes she could die and I was deeply scared...and deeply leaning on God too. Lean into Him, you CAN fall off the tightrope...He will not allow you to be crushed or 'snuffed out'. Let yourself be carried sweet woman.
    I am praying for you!

  5. What an amazing mother you are to little Manny. He is one very beautiful boy. Your blog today reminded me of what a friend once said to me, "God doesn't give us more than we can handle. I just wish he didn't trust me so much."
    People will say stupid and inappropriate things. I just wrote about this to a Facebook friend of mine to vent about our experience. We suffered a very devastating loss last year. Some people said things like "nature makes mistakes" and "you can always have another" to us... horrible things to hear from ignorant people. We considered the sources and left it at that.
    You are on an incredible journey. Your family is in our thoughts and prayers.