Wednesday, July 20, 2016

Finding Answers

It isn't a secret that Us Hooligans have been MIA lately, and for the first time ever, I am perfectly OK with it. My most recent blogging hiatus was so needed after a CRAZYYYYYYY winter/spring with all the Zika virus/microcephaly media attention. We are grateful to have had the privilege of sharing our girls' lives, and we were lucky to work with some amazing journalists who truly have gifts of telling our family's story so beautifully.  To them, we say THANK YOU!  

But I'm not gonna lie, it has felt positively scrumtrulescent getting our lives back to "normal." (If you don't click through and listen to that 0:02 clip of Will Ferrell saying that genius word on SNL, you are missin' out!) Where was I? Oh yeah. We've just been livin' the dream! Without going into too many details and instigating a full-fledged sob-fest, suffice it to say that I am oh-too-painfully aware of the fact that my only-child-who-will-attend-school-and-likely-graduate-in-a-robe (though not ruling anything out with our dwarves) has <gasp!> ONE. YEAR. REMAINING. Oh yes, you read that correct. Cal is about to start his SENIOR YEAR OF HIGH SCHOOL. My babyyyyyy!  My son.  MY HEART.  I almost cannot even discuss this situation without tearing up. My emotions have been swirling like a real shitnado up in here. One day I have brilliant perspective, complete with a smile, uplifting thoughts about how "maybe by then I'll be ready," and how he is "preparing me slowly for him leaving by being gone all the time now," and I should be proud of myself that I've "raised him right" so he is "ready for the world," and how much fun it will be to have a student in college who is hopefully playing basketball and growing up and figuring out his future & all that jazz.  I try to convince myself how awesome it will be to have my "nights free" and how much we'll be able to "get done around here" and how we'll be "more social with friends we've lost touch with" and how we'll be "poppin' bottles" & "knockin' boots" more without all of Cal's schedule in the mix. 

Other days (and trust me when I say I try to not let these days outweigh the others), I am a complete disaster. I cry randomly when people ask me non-related questions.  I bring it up at inappropriate times.  I think about it incessantly.  I dwell on how DIFFERENT life is going to be without him around... how QUIET this house is going to be... how different *I* will be. (Damn floodgates opened up already?!?!) Don't get me wrong, (and here's that damn disclaimer again!) I LOVE MY LIFE AS IT IS.  But the keywords there were "as it is." I'm not a huge fan of change. I very much like my life exactly as it is RIGHT THE F NOW.  Thinking ahead to the future has me more flustered than I feel 4 minutes into HGTV's Tiny House Hunters. (I mean REALLY?!?!?  Who wants to live in a 173 sq. ft. house with other people and pets FULL FREAKIN' TIME?!?!?)

We've been living in the moment, you guys. FULLY enjoying the year I DO have left.  I don't wanna miss anything. We've been following Cal all over the country to his various AAU basketball tournaments & truly trying to spend time with him while we can. Hope you guys understand!  I do try to stay active on our Hartley Hooligans Facebook page and on "The Gram" in case you need your daily fix of Da' Hooligans. See you over there!

Recently we re-started genetic testing for Claire & Lola. We are working with Walsh Labs, a part of Boston Children's Hospital, on our quest to try to find answers about our genes.  We began genetic testing when Claire was born, and so far, we have zero answers. We are aware that could happen again, but with technology being more advanced now, we're hoping that this time will be different. The process could take months, years or even decades.  No one knows.  But we're happy to say that the ball is rolling.  We are hopeful that in time we'll be given more clear answers as to how our girlies got their genetic superpowers. Also, we're hoping to find out if Cal is a carrier as well and what his risks are for having children like Claire & Lola someday many, many, many years down the road. We will certainly keep you all posted of any results that come our way!

Our girls were very brave getting their blood drawn.  Missy may quite possibly be the best phlebotomist on the planet. She was so patient with the girls, their high tone, and all that 'tude.  Big love to her for always making my their blood draws as non-dramatic as possible!

"Bitch, I KNOW what's comin'.  GET OFF OF MEEEEEEE!!!!"

"Son of a Nutcracker, that hurts!!!!!!"

"Oh wait.  That's not so bad!"
(Shortly after this, Claire fell asleep while Missy finished up!)

And then it was Lola's turn...

"Ummmmm, tell me you are trying to help me do my best Funky Chicken move right now..."

(The vein blew.)

Trying a large vein in her lower leg...

(The large, super-visible vein that was going to be "THE ANSWER" blew also.)

Moving on to the groin where we were able to get a full tube+ from our wee little Lola!
(Did I mention that it took like 5 minutes for it to slowwwwwwwwly trickle out?!)  
Blood from all 5 of us plus saliva from Lola (since she was only able to fill one tube of blood!) was successfully sent to Boston!  YEAH!  We are also on a 10 month waiting list to be seen in office for a genetic evaluation in KC.  Hoping to start WES (Whole Exome Sequencing) then in addition to the testing Boston is doing.  Fingers crossed!

The girls have been busy during summer school learning about the Badlands & various other awesome ecosystems.  Can I just get an "Amen!" for all my fabulous teachers/therapists that take time out of their summers to come work with our girls?!?!?  WE LOVE YOU!

Amy playing hardcore rap videos about Bison for the girls off YouTube.

Claire gettin' it DONE in her new Rifton Gait Trainer!

If you didn't see the video of her walking, click on this link to see my girl in action the FIRST TIME SHE GOT IN HER WALKER!!!!!!!!  Talk about a blubbering mess of tears... it was THE MOST BEAUTIFUL THING I HAVE EVER WITNESSED IN MY WHOLE LIFE, aside from my kids' births & possibly that one raccoon video where he stands on his hind legs and uses his tiny human-like hands to rattle that rock against the sliding glass window repeatedly for like 2 minutes so he can get more food in his food bowl because he is a freakin' G, but that's beside the point.


The long lost Kardashian sister, minus the gigantic ass, fantastic tan, and fake boobs.
We shall call her Kola.  Or maybe Kocket.  HA!



Lulu said...

I heart the 'Heartley Hooligans' (yes, I went there :)) so damn much! the love, the HUMOR, the joy, the fears and trepidation, did I mention the awesome humor?, and everything else about your totally extraordinary yet somehow so normal make my heart happy.

Unknown said...

Tears of Joy! Ibjust truly feel the blessings of your spirit every time I read! Cal, will always be your baby boy, your family has a gift of love, thank you for sharing the most precious gift!

Unknown said...

I love your stories so much! Very inspiring in your spirit and the triumphs. Keep smiling and know that even in his triumphs, your son will always be everything to you he has always been.
Louise Hartley

Twinsplus1 said...

Kocket?! Bwahahahahha! I love readung your writing! Thanks for sharing!

Duarte Family said...

Watching your girls makes me feel like I am not alone. I am proud of them both for everything they are accomplishing. I am working hard on having my 8 year olds g-tube removed and watching your girls gives me hope for my own child. There are days where I feel lost and somewhat defeated but Anything is possible and someday we will get there. My child had genetic testing and the cause of her spastic quadreplegic cerebral palsy alongside with multiple other disabilities were due to a blood clot that was passed from her mother to my child. It caused a stroke and she was given no life span. In fact, all doctors advised to terminate the pregnancy but that did not happen. She was given zero chance of life and she is now 8 going on 9 years old on ZERO medications anymore (besides albuterol as needed, which is hardly ever)! She as well as your beautiful girls are a gift from God himself. Big hugs to your family! Xo

Unknown said...

Admiring the photos of your BEAUTIFUL family! You ALL have fashion model looks! And the dogs are pretty OK too!

As for the "expert medical advice" you received, I and my family had a similar experience when my younger brother was dying of cancer. Sometimes you have to go with the Wisdom and Guidance God provides--I commend you for being faithful listeners to His Word, and the courage to put the "experts" behind you!

I'm deeply touched by the vast numbers of people who have been blessed by your courageous blog! I give God all the glory for putting people like you and your husband on this earth! As for the others, the trolls with their insensitive comments, well, I pray for them too!

God Bless! I hope I can meet you all someday!

Kacky said...

Reading your comments about Cal makes me jealous because there is a good chance that you will have one or more grandchildren within the next decade or two. Imagine!

I hope they are able to do some work with the genetics, When my severely autistic som was 4, his doc gave us a referral to a genetics specialist, because he was curious too. There are a lot of things going on in the family bloodlines. Anyway they abused us and tried to make me feel really bad for wanting to look. That was 30 years ago and I never tried again.

Unknown said...

I don't even know how I stumbled upon your story because I wasn't looking up anything related to it, but I am so glad I did! You are so touching and inspiring and I am just filled with joy after reading your blog. The amount of love and hope you and your family have is just overwhelming. I pray that you never lose those two things in your life, no matter how challenging things get. The Lord knew what he was doing when he made you two parents of these little angels. He truly did!!! May God always protect you and your family and always bring you peace and love!

Unknown said...

My oldest daughter just graduated in June and I was literally a hot mess all year! AND I have 3 others. You're not alone... Plus the best part is it will get even worse at around spring, lol, not really though. :"( They're our big babies!!!

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