11 April 2012

hope, heartache, happiness

hope, heartache, & happiness are doing a funny dance in my life right now. they coexist in a strange way.

it has been an intense 24 (or so) hours.
my brain is on overdrive.

yesterday afternoon at target i was making some purchases. the cashier was trying to talk me into signing up for their debit card and made a remark about how expensive diapers are and how it would help with that. i replied, "oh, our girl will be potty trained soon." then the target cashier responded with something about "when the next one comes along."

it stung.
it was like a punch.

i didn't have the heart to launch into our story. i didn't have the courage to tell her i am lucky to be alive after my pregnancy with sookie. i didn't have the audacity to tell her another pregnancy would kill me.

if only we could all think a little bit, before we speak. before we overstep boundaries and rub salt on a (very open) wound.

& the silly thing is, i'm used to these types of comments. i can usually shrug them off, let them slide off my back like a duck, pick up my girl, kiss her lovingly and move on.

but yesterday was different and i don't know why. i'm over it now though, keeping my chin up. i know how special our girl is, what an absolute miracle she is, and really i can be overly sensitive to stranger's comments.

kelle hampton was on the today show this morning. i'll shy away from commentary about the two women who "interviewed" her, but let's channel kelle's incredible attitude and pick out the best part. kelle's words. (as always) you can find beauty in whatever, out of heartache comes happiness.

this morning i found out a young woman with cystinosis, who was in her late 20s, passed away yesterday. she lived in the UK and i did not know her personally. but oh it hit me hard. 

i'm hesitant to put into words how something like this creates a mess of feelings in my heart and my soul. there is hope, gut wrenching heartache, survivor's guilt i am here when many with cystinosis are not. there is happiness i am still here. with my family, with my daughter. who is healthy. who is energetic. who is a force to be reckon with. there is so much happening behind the scenes in the cystinosis world that will lead to treatment for all of the known adult issues. i'm honored and blessed to be on the board of directors for the cystinosis research network where hard work is being done. there is tangible hope and that is more precious than anything. i received some news a few weeks ago that is so encouraging, it left me shaking with possibility and sobbing with gratitude. the kind of news that is awesome and forever life changing. 

then when someone my age passes away with this illness, it is like the floor is quickly ripped out from under you. it snaps me to attention. it reminds me how far we have to go. it makes my blood boil with anger and confusion. i'm propelled to spread awareness faster, to fundraise quicker and bigger and better, to fuel interest in solving the several obstacles associated with this condition.

the happiness? the happiness is the letting go of the unimportant. the past few months since my trip to the NIH i've been struggling with certain things i haven't blogged about and some i have, i finally feel (felt? hmm) like i'm turning a corner in all of it. simmering down to the core of life. it is powerful. it is tough. it hurts so good because i feel i've grown an incredible amount in a short span of time. oh, i stumble. but my chin quickly finds the way up toward the sun.

i suppose what i'm trying to say, is that although it may sound impossible, i have hope. i'm feeling heartache. and happiness abounds in our days.

how about you? are you feeling an equal amount of hope, heartache, happiness right now? is any one emotion outweighing the other? what are you hopeful about? what causes your heart to hurt? what fuels your happiness?


  1. I would have been upset by that comment too, I think.

    Also, interesting that you post a post like this the same week I also wrote about some people having made insensitive comments to me about illness-related things (in my case, steroid weight gain). You are not the only person who wishes others sometimes engaged their brains a bit more before they opened their mouths! :S

    1. i think i need tougher skin. ;)

      ahhh...i gained so much weight when i was on high doses of prednisone! crazy on an 11 year olds body! i'm so sorry! people sometimes just don't have a filter between their brain and their mouth. or they don't even stop to think for a few seconds about a reality completely different than one they assume to be.

  2. I can see why that comment bothered you. She really had no clue about your circumstances. I might have said that she is my one and only. And you never know.....we adopted a child that we never planned on.
    I am almost finished reading Kelle's book. I love her blog. Her children are just the sweetest little girls. I was so surprised yesterday. Not only did they make Kelle wait to the very end of their show.....they didn't let her talk. I could tell that she didn't get to say what she wanted to. I usually like Kathie Lee and Hoda.........but they didn't seem to "get" it about Nella. When Kathie Lee brought up about Brett having other children.....I was also shocked. Kelle never hides that. Why was that something to talk about in such a short time. Kelle handled with the grace that she always does.
    When I had sarcoma's of my leg my daughter's High school boyfriends' step dad had cancer in his leg as well. I remember one night on the boy's BD Mom called and said they were stuck in a doctors appt. and would be late. So we picked up their 3 boys and our three (at the time) and took them out for dinner to celebrate the birthday. Later the step dad lost his battle and I survived. I felt so guilty and sad. So I "get" how you feel. But it isn't anything that you had control over.
    So sorry you have to go through this. (((((HUGS))))

    1. hi debby!

      sometimes i do share a little bit about our girl, i felt off that day for some reason and just clammed up!

      i am witnessing some heartbreaking things happening when people with cystinosis are going through the adoption process. because the articles out there in the media right now are so quick to put an expiration date on our lives, and play up the fact that "most succumb to the condition by age 40" (reporter's words, definitely not mine!} adoption agencies are taking note of this and it is incredibly frustrating.

      yes, there definitely seemed to be some sensitivity chips missing with kathy lee and hoda yesterday! i just wanted to hug kelle. when they kept referring to "down children" i was so frustrated. people first language is extremely crucial, i wish everyone would catch on! ;)

      i am so happy the sarcoma of your leg is healed! it can be so heartbreaking when people are facing the same obstacles as us, and they don't make it.

      hugs to you!! :)

  3. i tweeted you about this yesterday, but I figured I'd comment too. this makes me so sad. I know people don't realize what they are saying, but it hurts none the less. we are going through infertility and it's heart breaking. The things people say.... and the pregnant women everywhere. Like you, most of the time I try to be happy for those people. And be thankful for what I have, even though the thing I want the most is what I don't have. But sometimes, you just want to be mad and hurt and angry. And I think, sometimes, that's ok. Hugs to you <3

  4. Tahnie - my heart aches for you. Having to relive the pain of such a sensitive topic is bad enough, let alone having to hear it from a complete stranger in the line at Target. Sending big hugs your way. We went to dinner the other night and the restaurant owner asked Austin if everything was ok. Austin didn't look "well" because his face was a little puffy because his dialysis the night before hadn't pulled off enough fluid. It's frustrating. We get comments all the time from people who go on and on about how Austin doesn't look 14 years old but looks more like an 8 year old, right in front of him. It hurts me so I can only imagine how Austin feels. We need a "universal sensitivity class" taught in high school or something. People can just be so insensitive.

  5. You inspire me with this story! I love that you fight for life and savor it. And a poignant reminder to think twice before talking about things that are none of our business with strangers.

  6. Hi I think i've passed through here before, how are you? This was a touching post because although I don't live with a illness that could kill me, I've struggled with my health since 1996, and I too am unable to have more children. But you are right, the woman was not being rude and we can be overly sensitive to strangers comments, well put, because like I said, unless they are rude, it's pretty harmless it's OK that they don't know and they don't need to know and that's OK if they make comments that we know hold no merit....Awww...you have a beautiful heart and I can see your zest for life is contagious, thank you for sharing!!!

  7. You are so strong and inspirational! Val x

  8. I like that. When we look future we sometimes reflect on past mistakes. We need to learn from our mistakes or else we won't grow. Guilt is a useless emotion.

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