Tuesday, July 25, 2017


Two nights ago, I dreamt that Claire spoke her very first word ever. It was not my usual type of dream because I didn't dream she was radically different or more advanced. I dreamt she was exactly as she is in "real life." During the dream, Claire was mad and arching as she sometimes does when she is laying on her tummy in her beanbag and her g-tube is tilted in the stoma or rubbing on her belly in an uncomfortable way. She will almost do what looks like a push-up in her beanbag, arching her upper body wayyyyy off the beanbag to alleviate the pressure on this sensitive area. 

In the dream, she was doing this very thing. And as I always do in reality, I walked over to her in the dream and said, "Here, baby! Let me help flip you over. Does that feel better?" to which she replied with a smile, "Better!" (It actually sounded a little bit like she said "butter!") My eyes widened, and I said, "What did you say?" She grinned and again said, "Better!" I kept asking her to say it again, and every time she would repeat "better," grinning with pride. I tested her to see if she could say any other words, and my sweet girl just wanted to say "better!"

After she had said this word maybe 20-25 times in my dream, in complete disbelief, I grabbed my phone to video it, and she immediately clammed up and gave me her best RBF, just as she does almost every time I try to take her picture now, in true diva fashion. Don't get it twisted, I totally dig her 'tude, but it is becoming increasingly difficult to get a real nice pic of my girl these days. And if you know me, I like my pictures, so she & I have been butting heads about this very thing lately!   

I was left feeling confused when I woke up, always trying to seek meaning from the things that life throws my way. And I also felt a little bit wistful for the things she is still unable to do. I love her for the way she CAN communicate with the world and for the progress she HAS made in her therapies and so forth. Do I wish she could do more? Absofuckinglutely. But do I value who she is and love where she's at currently? Damn skippy. These highs & lows, you guys... these far extremes... the many polarities in my thoughts and feelings... they're very real, and they hit me hard sometimes, these last few months especially. 

Today Claire turns 16 years old. Sweet 16... holy shit. How is that even possible?! I look at her with such admiration and awe at all she has fought through to stay. My child who wasn't supposed to live to age 1 is SIXTEEN today. I bow to my knees and pray to every God/angel/protector/magician in the whole Universe for wrapping their arms around my precious girl and giving us the gift of time. 

The more I think about my dream, the more I wonder if maybe Claire just needed me to see things from a "better" angle. Perhaps she wanted me to remember the most important thing in life -- that I am in control of my own happiness, and life can be "better" if I so choose. I'm not gonna lie, it has all felt pretty heavy lately... pretty sad... pretty out of my hands. Not just Lola's rash, but nearly every other area of my life as well. 

Leave it up to my best little teachers to help me see things from a different vantage point. That's generally how it works. They give me such perspective and always bring me back to a place of love. 

I wish you the happiest of birthdays, my sweet Mimi. You shook my soul to its core 16 years ago, you showed me what love really is, and you simply made.  me.  BETTER.  I love you with all of my heart, soul and being, my perfect girl. 

Kerby, Cal, Claire, Christina, Lola & Elisabeth

If anyone ever spots these ostrich socks in grown-up ladies sizing,
I'll give you a million bucks if you buy them for me.
Just kidding.  Sort of.  Tee heeeeeeee!  I NEED THESE!


Tuesday, May 02, 2017

Nipples galore!

*NOTE:  PLEASE SHARE THIS BLOG POST!!!!!  (Read below to see why!)

Me & Pocket  ~  3.29.17

HEY, GUYS!  You might remember the below picture I posted on my personal Facebook page and my Hartley Hooligans Facebook page back in November of 2016 which was shared over 8,100 times. You may recall my plea for now discontinued Playtex latex fast flow nipples, the ONLY kind of nipple our Lola is able to use and how her dwindling latex nipple supply was in a world of hurt. You may remember my many nipple posts/tweets/memes/inappropriate comments (You're welcome). You may also have noticed that I've not updated you guys in a LONG while about #Nipplegate2016, and so I wanted to give you the 411 (Did I just date myself?!?! Shout out to Mary J!) on what's been goin' down the past 5 months!  

Reeeeeeeeally freakin' hard to find these bad boys in 2016 & beyond, yo...

Mrs. I Can't Do Things Like Everyone Else Because I Am A Creature Of Habit And Also A Real Freakin' G

The most awesome part of this whole nipple fiasco is that not only was my post shared a ton, but my desperate pleas were also ANSWERED.  My daily post office visits resulted in box after box and envelope after envelope filled with nothin' but nipples.  Every single day I would gather my stash in udder utter (tee hee!) delight that people cared so much to take the time to send me unused nipples they found in their basement or got from a friend.  You have NO IDEA what this has meant to us!  I offered to pay for the nipples and/or shipping, and every single time, I was told no.  The final tally of nipples we received was................ <DRUMROLL PLEASE!> .................. 357 nipples!!!!!!!!! 357!!!!!!!!!!!!  FAITH. OFFICIALLY. RESTORED in the human race, you guys.  OMG. Still in shock SO many of you took the time to send these to us.  We have been using them for the past 5 months, and honestly, I don't know what we'd have done if it weren't for all these nipples we were sent. They've been a LIFESAVER for our girl!

And on top of that, I got to hear the funniest man on the planet -- my hubby, Scott! -- drop the best comments EVER about "what better package could one possibly receive than a box full of nipples" or he'd coin a new term (Nipplemania, Nipplefest, NipNipNip, Nipply AF, #nipplesalldayerryday, Nipocalypse, Nipped Out, Mount Nipple, #nipsfordays... you name it!) or he'd sing, "Today was a good day" in his best Ice Cube voice after we'd get like 12 more packages of straight nipples.  He even threatened to have professional pictures taken of him (possibly buck nekked) amidst all the nipples strategically placed (which could or could not be a complete insult to him as a dude!) to cover his special parts.  (I won't mention how many times I've had nightmares of this very image since this threat was made!)   

Oh hot damn!   My daily P.O. run for awhile there looked like this!
What a teat, I mean TREAT!, it was to go pick up so many packages every day to help our girlie!!!

One day's loot!

We also got some extra bottles & bottle liners that people weren't using.  You guys are THE BEST!

Our "Thank You" for everyone who donated nipples/bottles/liners!

If for some reason you didn't receive yours (there were 2-3 that I could NOT find addresses for that were bought off eBay & some that bounced back to me), PLEASE send me your address via email or DM so I can get this out to you right away!  

The other side of things that I wasn't able to discuss until it was finalized was that I was in talks with Playtex Baby since the beginning about possibly helping us out with Lola's nipple dilemma.  They were originally trying to locate any remaining latex inventory not only in North America but also worldwide.  Their search came up empty.  After more consideration, they reached out to me about doing a production run of these latex nipples for Lola.  We discussed her special, unique situation, how we knew latex "expired" in three years' time, how we would hopefully (God willing) need this to be an ongoing thing for Lola, as bottles were the only way she could take her formula/liquids (since putting her under anesthesia to place a g-tube was not possible).  We talked about her needs, her requirements for # of nipples, the kindness of outsiders sending us their unused/used latex nipples, and where to go from here. We were ELATED to hear that Playtex Baby decided to send us 1,095 latex, fast flow nipples (one nipple a day for 3 years' time) for our Lola!

Not only did these nipples arrive a few days ago, but with them came an email from the General Manager of Playtex Baby stating that they would do production runs for 1,095 nipples for Lola at every three year interval after that as well!!! SO GRATEFUL that they still had the equipment available to produce these discontinued nipples for us and that they cared enough to do so.  A HUGE thank you to James MacIntosh and Carolyn Abbass for taking the time to discuss Lola's needs & for making the thoughtful decision to help her.  You will NEVER know what this has meant to us. THANK YOU from the bottom of our hearts.

Note:  I wanted to clarify one important point, on behalf of Playtex Baby.  This was a VERY special situation with unique circumstances involved.  Playtex Baby receives many requests for specific products or help with discontinued items.  They do their best to always accommodate those in need, but it's not always possible to do so. We are eternally grateful they were able to help us, but I just wanted to make note that this is not always something within their capability to do.    

Our Playtex Baby shipment is here!!!

Zoom in to read the enclosed note... So much love.


Lola is so happy!!!!!!!

Thank you, Playtex Baby Team!!!

As promised... 


My heart (& tub) is full!!!!!!!

For the record, our final nipple tally from everyone who shipped us nipples plus what Playtex donated was 1,452!!!


1452, you guys!!!!!!!!!!!!!!


I could NOT resist!!!

And before you all freak out, all the nipples were sealed in plastic bags
and will be boiled before the first use!  No doggy germs or bodily fluids here.

I will spare you the pics of Scott though.  HA!

True story.
Especially up in here!

Thank you ALL so much for your kindness & generosity toward our Lola.
You will NEVER know what this has meant to us that you stepped up in such a HUGE WAY during our time of need.

This.  Sooooo much this.

All I know is this:
  1. My faith in humanity is restored.  Across the freakin' board.
  2. I am a loyal Playtex Baby customer FOR LIFE.
  3. Every chance I get to pay it forward to others in need, I intend to do so.
  4. Playtex Baby deserves soooo many props for how they are helping our Lola for the rest of her life.
  5. Sharing this blog post as much as possible will get Playtex Baby the credit they SO deserve!!!
  6. To my longtime followers & those who helped us by sending nipples to Lola -- You guys are THE BEST!!!  We love you so very much. 


Thursday, April 13, 2017

Thankful Thursday

Today I am thankful that Natalie, Chris & Gerald took the time to share our family's story recently.  I have updated my blog's Media page with our most recent interviews, but I wanted to share them here as well.  My hope is that when people are educated about those with differences that they no longer will fear what they do not understand.  I hope that instead they will take the time to understand these differences & realize what importance these individuals have in our world & how much they have to offer.

  • We SO enjoyed meeting Christopher Ulmer from Special Books by Special Kids!  We are so grateful he took the time to fly from Florida to Kansas to come meet our girls & other kiddos in the area who also happen to have superpowers.  Click play below to watch our interview.  Also be sure to check out the SBSK Facebook page to see more amazing interviews!!!  Just so, so proud of Chris & all the important work he is doing. We love you, Chris!

  • I had the best visit with Gerald at Orange Socks!  Being a fellow parent of a child with special needs, he asked amazing questions & our time together on the phone flew by. You can hear the entire interview (I apologize for being a little long-winded... HA!) by visiting Orange Socks' Stories Page & clicking on "Gwen: Microcephaly, Asparagine Synthetase Deficiency or ASNS" link. While you are there, take the time to listen to the other interviews as well.  The strength & dedication of these parents straight up floors me.  I am proud to be in such good company.

Happy Thursday!


Monday, January 09, 2017

I'm at it again...

You're welcome in advance for not sharing every single one of my completely-fucked-up-to-the-point-you-would-be-concerned-for-my-actual-health-and-well-being dreams with you on a daily basis.  I'm not joking when I say that Scott has expressed genuine concern about me at least once in the last week and too many times over the course of our marriage to even count, after hearing what my dreams entail upon waking.  Usually they're just WEIRD, sometimes quite telling about where I am emotionally, but usually they are just worthy of eye rolls upon eye rolls.  For your sake, I won't go into details about my blindfolded, not-so-soft-core, sexy dream from last week which felt very much like a cross between Dexter and 50 Shades, but I will share with you the dream I had last night which definitely got me thinking...

During this dream, I was walking behind many of my family members.  It was almost like an out of body experience.  It was as if I was in another realm, watching life unfold while observing from behind.  It felt like I was seeing our lives from the outside in vs. the inside out.  It was dark outside, and light snow was falling.  Everyone was dressed warmly.  I looked at & studied each person as they interacted with one another, smiling, laughing, enjoying the winter night out.  Everyone was happy and acting silly.  It was then that I noticed Lola... she wasn't being carried, she was walking while holding the hand of a family member. She was the exact size she is now, but she was walking. She wasn't walking "normally;" she was sort of stiff-legged, almost prancing lightly over the ground. Her hair was braided in a Heidi braid over the top of her head.  I instantly knew it was her.  I could recognize that darling little head and those cute little ears from a mile away. Claire was not in the dream. My whole focus was solely on Lola, and I could not take my eyes off of her and the fact that she was mobile. It was both touching and fascinating, all at the same time. To see her upright and moving, to see our family member bending down SO LOW to grab her tiny little hand for support, to see her feel so free... it was incredible.

But I didn't feel sad or teary in the dream as I usually would have.  Instead, I was joyful and ecstatic. It was then in my dream that I saw her fall forward... and the family member kept a tight grasp on her hand, and she was able to regain her footing.  It felt so amazing to see her this way, so unencumbered by her own body. So different than she is in her usual daily life.

I need a live-in dream interpreter STAT!  Singlehandedly, I would keep him/her in business!  I wish I could make sense of this dream -- or maybe the real lesson here is that I don't need to make sense of it at all.

A year or so ago, I dreamt the same thing about Lola.  It was such a different feel, almost as if it is ME who is growing, changing, and evolving now. That makes me so happy.  And just as I typed this, I saw 11:11 on my computer clock. No mistakes... I am right where I need to be.
Related Posts Plugin for WordPress, Blogger...