Thursday, May 21, 2015

To all the families out there who just had a child with special needs... YOU GOT THIS.

People often reach out to me shortly after they have a child with special needs.  I wonder if that is because they think that I surely must understand what they're feeling, as I've gone through it twice myself. While I am honored to be contacted and I love to help whenever I can, I sometimes wonder if I am the best person to be dishing out advice. Just because I have two beautiful daughters with profound special needs does *NOT* mean I have all the answers.  In fact, many days I still feel like I am drowning, splashing and bobbing in a sea of confusion, waiting for that perfect person/situation/doctor/remedy/voodoo/natural cure to throw me the friggin' life preserver and save me from feeling so lost. 

In addition, giving advice is also tricky because it is damn near impossible to compare kiddos, as no two are the same, and as I've found in the past, doing so can only make things more scary and complicated.  I remember searching early on for that ONE KID who was JUST like my Claire.  I was positive that if I found him/her, that I would have all the answers to the lingering questions that circled through my mind day in & day out that I could not seem to figure out on my own.  I remember my dear friend Rachel, a veteran special needs mama, telling me that basically I was pissing up a rope. She explained that this so-called "match" didn't exist, probably never would, and that this wasn't necessarily a bad thing.  It just meant that my daughter was unique, perfect, & her own little individual charting her own little course.  I cannot tell you how much this terrified me initially. 

That being said, it was these veteran special needs mommies that I met early on who, quite simply, kept me afloat. My online community was my lifeline. They answered my never-ending questions, gave me support, comforted me, and cried with me. We have become "real" friends over the past 13+ years, and I am so grateful that I've been able to meet a few of them in person. They probably know me better & understand my struggles moreso than many of my friends and family who live nearby.  To them I say a sincere THANK YOU.  Thank you for lifting me up & keeping it real with me all those years ago.  I have made it my vow ever since to do the same whenever I can, and I urge anyone who reads this to "pay it forward" any way you can as well. Your experiences and wisdom could change the course of another fearful new mommy's life.

If you are starting out on this journey into this world of special needs, I would tell you this... YOU HAVE SO TOTALLY GOT THIS.  That's right.  You've got this.  Even though I don't know you personally, I "knowwwww" you.  I've BEEN in your shoes.  And you have GOT THIS.  I know that fear you're feeling that is just under the surface at all times, literally 24/7.  Just typing those words caused me to well up with tears myself, because I'm not shitting you when I say that it's still RIGHT THERE for me, too... yes, 13+ years down the road & these emotions are still running high & I STILL feel that sense of sorrow because I remember it like it was yesterday & it is unlike any other feeling I've ever felt.  I am pretty sure it is something that will NEVER leave you, no matter how your child's story concludes. And I don't tell you this to scare you or discourage you, but I tell you so you know I'm human & not some robot mom who thinks she has "special needs" all figured out.  It still floors me from time to time.  I still randomly ugly cry in the shower where no one else can hear me for no reason at all except straight up FEAR OF THE FUTURE.  I still ask my hubby if he's "OK" about all this & if he still gets sad that our daughters won't have typical lives like their big brother.  I still have fits & question God & scream & curse & hug my daughters & slather them with kisses & overprotect Cal & cling to THIS MOMENT often because that's all I've got.  The HERE & NOW. 

Emotions & letting yourself feel things is very therapeutic. Coping with life not going "perfectly," adjusting your sails & realizing it is STILL perfect fucking rocks, too.  I know that worry, that struggle to still live your life while searching to find what that new life entails.  I understand your desire to maximize your child's life fully.  I feel the love... the deepest love I have ever known or experienced... the kind that literally feels exactly like the Elizabeth Stone quote states, "It is to decide forever to have your heart go walking outside your body." And just typing that quote made me shed a few more tears because neither of my daughters are able to walk but they are SOOOOOO my heart.  I know all about the relationship/sleep/marital/friend/therapist/doctor/research/social/school/etc. struggles. And still, despite all of these strikes against you, YOU HAVE GOT THIS.  No question.

Know why I know this?  Because I know you were given this life for a reason.  I truly believe you were chosen to be your child's parent/grandparent/aunt/cousin/sister/brother/uncle/bestie/homegirl/bro/etc.  Yep.  No accidents.  I don't think it is chance that this occurred.  I am pretty sure moments of your life leading up to this point have perfectly prepared you to take this on.  I remember saying early on that I couldn't figure out why *I* was chosen to be Claire's Mommy.  Why not ___<insert more qualified mommy's name>___?  She was SUCH a better Mom with more faith & understanding.  Looking back now, I KNOW Claire was meant to be my daughter, as was Lola. They have completed our lives as only they could.  They have made me ME & made us US. 

I have to say this because it's SUPER important... but please PROMISE ME that you will never let any doctor, nurse, specialist, expert, etc. tell you with 100% assurance what your child's future holds.  No one knows that, and quite frankly, often times it's a piss poor prognosis that they give. They're best at giving worst case scenarios for any given situation, as they'd rather set you up to fail and end up being the hero when that doesn't occur vs. saying all will be well & then something awful happens & they look like a dick. They can give you their best guess, a hypothesis of what they have seen in the past with similar situations. Take that all to heart.  But let me tell you this... they have NO IDEA how strong your child is, and they DAMN SURE have no clue how strong YOU ARE.  Together, you and your child-who-happens-to-have-special-powers (I mean needs!) are an unstoppable team. (Special needs parents are notorious for being the parents least likely to get fucked over/talked down to by doctors.  Pretty sure there is statistical documentation of this somewhere at WebMD.  HA!  We are Mama Bears & we protect our cubs at all costs!  Yet another reason you've SO got this.)  Remember that all that gloom & doom is nothing but words & numbers & useless statistics.  Your child will write his/her own book.  Let that shit unfold.  Be ready to have your world rocked.  Highest of highs & lowest of lows, baby.  Enjoy it all.  It it changing you.

Over the course of this adventure, you will encounter some terrifying things; things so horrifying that at times you feel as if you are having an out-of-body experience.  I recall a time when Claire was 3.5 years old and was rushed to the hospital with extreme dehydration due to Rotavirus.  At one point, a doctor asked to speak to me alone in the hallway.  He proceeded to tell me that there was a really good chance that Claire would not pull through this illness.  He had seen typical children not survive this level of dehydration.  He wanted me to know that death was likely, due to her special needs.  I remember feeling like I was watching a heart-wrenching episode of Grey's Anatomy or ER vs. living this in real life.  To this day, it still feels like a dream.  I remember going back in to see Claire, and I felt such a sense of peace that this was not her time. She looked into my eyes, and I knew she was going to pull through.  And she did.  That's the beauty of these kind of relationships -- the connection she & I have on that soul level...  Feeling deeper, communicating without words, loving harder.  Don't get me wrong, I wish sometimes I could hear her speak, listen to her feelings, and understand her more, but there is something so precious about communication on a soul level. An inner knowing... that peace that comes with being still in a moment such as this... the intensity of our love & connection as mother-daughter.  Knowing how much I have invested in this precious life & fighting like hell to salvage it all.  Gives me chills still.


No matter how limited your child is with regards to communication, know that you will find a way to understand his/her needs.  You will know every grunt, whimper, gasp, cough, squeal and decode it like a skilled CIA agent. (You will be the next Jack Byrnes from Meet the Parents!  Your Circle of Trust will be a tight one, lemme tell ya'... HA!)  You will become an expert on your child in ways no doctor could ever rival. Surround yourself with knowledgeable doctors who will lean on you to educate them about your child vs. questioning your parenting methods because they aren't "the norm."  Find a doctor who will research things they don't understand, commend you on your parenting/detective work to figure out issues that arise, and support you the best way he/she knows how by offering medical advice & tips while still respecting that maybe you NEED to do things differently.  Seek out a doctor who sees the value and worth of your beautiful child who is different. And most of all, trust your "Mommy Instinct" because it will NEVER lead you astray. Remember, you know your child better than ANYONE.  This is so important.  

This "team" you are assembling is key.  I am not just referring to your support system at home -- family, friends, online groups, local moms of children who have special needs, etc. -- but I am also referring to your team of doctors, specialists, nurses, therapists & teachers. You will be spending a huge chunk of your time with these individuals, and it is crucial that your team understands your child as you do. You are now the president of an elite organization, and it's your job to be sure your team is running smoothly & everyone shares a common goal.  I often hear horror stories & nightmares about IEP meetings for therapy/school, and all I have to say is that I LOVE OUR IEP's because everyone is on the same page, we all want to optimize the hell out of the girls' lives, and we all fiercely love & protect them in a maternal way.  ASSEMBLE A QUALITY TEAM.  Make up informative fliers or booklets describing your child as well as your wishes, hopes and dreams for your child & his/her future.  Aim high, and remember how very strong & able your child is!  My best friends are my girls' therapists, caregivers, & nurses because I love how they love & support my girls.  I love how they love & support ME.  I love how they are fully committed to providing a level of care for my girls as if they were simply their own.  FIND THAT.  Don't settle for anything less. It sucks to have to let someone go, but trust me when I say that there is always someone out there who will give more, be more, love more.  You've got this.

Oh hey, I hate to break it to you, but jealousy is a dirty little bitch.  Sorry, but it had to be said. But OH MY GOSH, it's soooo normal.  I still catch myself saying things like, "Why couldn't both my girls have had Down Syndrome/no legs/super long legs/MS/MD/VD (HA!)/blindness/fill-in-the-blank-for-the-day instead?  I might have rocked that harder!!!"  It's pathetic and actually quite comical, but let yourself feel it.  I remember seeing our girls when they were under a year old compared to other kiddos their age, and the differences were pretty drastic.  I was so pissed that my girls couldn't sit up/crawl/smile/use their hands/nurse without major modifications/say "Mama"/shit without the help of The Shit Whisperer/work elaborate floor puzzles larger than their bodies... geesh, you name it. For a long time, I dreaded playgroups & get togethers with similarly-aged children.  I would go, put on a happy face, gloss over any difficulties we were having, try to relate to their lives, then go home bawling because I felt so fucking out of touch.  It was challenging on so many levels.  I lost friendships, it stressed some family relationships, and I felt more alone than ever before.

But a new world was opening up for me with reliable people who understood my feelings almost better than I understood them myself.  I was meeting new friends, weeding out those that weren't there for me, and bonding further with my husband & our close family.  Shit works itself out, yo. Let yourself feel it ALL. Cry, scream, yell, throw things, throw yourself off your deck (if your deck is 1 ft. off the ground!), call a friend & bitch, email me & bitch, just act like a bitch in general.  You are entitled to your feelings.  And denying yourself of them isn't healthy.  FEEL.  IT.  ALLLLLL.  Trust me when I say that these feelings will pass. And your beautiful child will still love you unconditionally & probably will delight in seeing you be a badass rebel who throws fits like nobody's business while simultaneously dropping more F-bombs than a sailor.  Oh wait, maybe that's just me!

Early on during Claire's first year of life, after being told that she likely would not live to be one year old, we not only met people who had lost children, but we also watched children we had gotten to know and even met in person pass away as well.  There are no words for how this shattered me.  I grieved for them, for their families & loved ones, and mostly for their children, whose lives were cut short.  Selfishly, I grieved for myself & my family.  I grieved for my child.  I grieved constantly... the first 18 months of Claire's life was extremely difficult.  I remember reaching out to several moms whose children had passed away.  I said, "I feel like if I grieve some now, I maybe won't have to grieve as hard later.  I am already grieving for the loss of 'the dream'... the loss of a typical childhood for my girl.  I just want to stop grieving.  I just want to be happy." And the answer I received every time was that no amount of grieving NOW will lessen the grief later. Grieving now is only wasting precious moments I currently have with my child.  There is NO WAY to prepare for losing a child.  No parent should EVER have to go through that experience.  But I have always held tightly to their words, and I believe it was their words that changed my whole outlook on our life. Why not make memories NOW -- laugh, love, smile, enjoy life, not let this disability stop us from having the lives we always wanted.  Our mission became finding joy amidst the struggle.  I just wanted to love my girls & our son with everything in me because they SO needed and craved that and it healed me in the process.  It STILL heals me.

Looking back on the past 13+ years of my life since Claire was born, there are some things I wish I would have done differently along the way.  First off, I wish I would have placed more of an importance on my marriage and relationship with my husband, Scott.  It wasn't until the last few years that we really focused on doing date nights or taking a walk together or going for a swim or (gasp!) a solo trip, just the two of us. According to a quick Google search, I have discovered that the divorce rate among typical families is 50%. In families who have one child with special needs, this number skyrockets to 80-90%.  I shudder to think of what it is for families who have multiple children with special needs, but honestly, it doesn't matter. We feel that we've been drawn closer together as a result of our children. We have since made it a priority to focus more on one another, and for this, I am SO GRATEFUL because Scott is truly my very best friend, my best listener, my best adviser, and the one who makes me laugh the most.  I need him.  I could not survive without him, and who else on the planet would understand this life any better than him?

Photo by Gavin Peters

I also wish I had found a way to get more sleep along the way.  We spent a decade surviving on mere minutes to hours of sleep nightly.  After developing health concerns of our own due to the physical toll that sleep deprivation takes on a body, we finally arranged to have nurses help care for our Lola at night.  I cannot tell you how hard that was to do... to admit that I couldn't do it myself any longer, to show weakness, to entrust my child to a total stranger, to think that my child is drawing comfort from someone other than my husband or me... I felt like a failure.  It was after I got a few weeks of sleep and my sanity/clear thinking returned that I realized this was one of the best decisions we ever made.  It is SO DAMN HARD asking for help.  It sucks to feel that I alone cannot meet my child's needs 24/7.  But now, a few years in, I literally have "No Ragrets" now. (I love We're The Millers!)

Cali P's Halloween costume in 2014!!!

Lastly, I have found the importance of finding healthy ways to manage my stress.  This stress clearly is not something that will go away anytime soon.  No matter what the future holds, stress will be part of my life.  I encourage you to find a way to deal with this whether it be yoga, fishing, meditation, Pilates, running, helping others, volunteering, spending time in nature, doing the horizontal mambo, gardening, lifting weights, reading a book, etc. Find something that makes you happy, and find a way to do this at least an hour, 3 times a week MINIMUM.  If you can squeeze it in more often, DO IT.  You are so much more than just your child's mommy or daddy.  You deserve to have time for yourself, and honestly, it is important.  Don't let anyone make you feel guilty for needing this time away.  Scott & I started getting monthly massages years ago. It is something we really look forward to.  I go to Pilates 2-3 times a week, and I try to walk or swim as many of the off days as I can.  Scott plays basketball with the guys 1-2 times a week.  We take Cal to the gym and rebound for him as he works on his basketball.  We get the girls into their therapy tub as much as we can & that is just as relaxing for us as it is for them!  I am still learning ways to cope/stay calm/not panic/not shart myself when the girls get sick.  This is a challenge for me.  I literally can immediately feel an adrenaline surge, and the thought of a possible hospital stay makes my teeth chatter -- no lie.  Promise me you will FIND A WAY TO DE-STRESS.  It is absolutely necessary for your health & well-being, and it will keep your body healthier so you can continue to be the awesome parent/cheerleader your child needs.

Remember that feeling you had when you first saw your child... the love that consumed you and the intensity of that emotional experience on day one?  Think of that love each day.  Remember that love is all that truly matters. Your family is setting such a beautiful example for everyone around you.  It is drawing your close and extended family closer together & forging tight bonds that you might have never had otherwise.  Live & love in this moment -- in the NOW.  You are doing a great job. I am so incredibly proud of you.  Remember that you are never alone.  You will likely be able to love the baby stage a little longer than most.  I still get to cuddle and smooch the cheeks of my 9 and 13 year olds!  They still want to be around me (though I do still embarrass them)!  Our bonds have strengthened over the years.  Both Claire & Lola have continued to blow the doctors' prognoses out of the water (and I have continued to remind those doctors of that fact yearly!). Yet I still pray & beg for more time with them (every birthday candle wish since 2001).  I just want to make more memories... I just want the world to continue to see how important and meaningful my girls' lives are JUST AS THEY ARE.  There are no words adequate enough to convey what they have always meant to me.

Sorry for writing a book, but there is just so much I needed to tell you.  I wish there was a way I could take away your pain & fear.  I wish I could show you a glimpse into your life even 1 year from today.  You won't believe how much you are capable of growing and loving.  You can thank your child for that.


PS -- One last thing... Let that "Mommy Guilt" go... for real.  Stop taking the blame for your child ending up with special needs.  Quit blaming your "faulty genes" or the fact you colored your hair or ate GMO's or didn't drink your own urine each morning (people actually do that shit!).  Your baby was meant to be yours, AS HE/SHE IS.  I promise.  Go rock THIS life.  You've SO got this.

Friday, February 13, 2015

I don't know how to put this, but my daughter is KIND OF a big deal.

Happy Friday the 13th!
Lola ~ Vision Therapy ~ 2.13.15
I had to pop on here & share a few awesome accomplishments made by our sweet Lola! Obviously we have some dwarf sibling rivalry going on here because Mrs. Pocket doesn't want to be shown up by her big sister, who clearly has been kicking ass & taking names dominating in her physical therapy sessions lately!  It is *SO* exciting to see progress with our girls, as we've waited literally 13 & 8 years to see these dreams become a reality. So, here goes...

1. Lola grew out of three 6 month size clothing items today - 2 pairs of adorable Carter's jeggings (too tight in her waist, shockingly!) & a darling Dr. Seuss onesie (boohoo! It was one of my favorites!). The other day I wondered if she had some crazy problem with the salivary glands in her cheeks because they looked so puffy.  I about Googled that shit when I realized that she simply had just gained weight! None of us can believe how HEALTHY Lola is looking these days.  It is such a joy for us to see her like this after watching her hit rock bottom a year or so ago weight-wise. Thank you, 8 lb. 6 oz. Baby Jesus, for letting Lola grow bigger than you!  HA!

2. Lola shook her head "no" emphatically this morning when I asked her if she wanted her bottle this morning!!! It was unexpected because normally she gets fired up when it's time to eat & downs her bottle in like 4 minutes, but today was different.  I offered it to her like always -- I squirted a little milk into her mouth and then put the bottle nipple in when she opened up wide.  She immediately made a bad face, jerked her head away from the bottle & stopped drinking entirely.  I said, "Do you want your bottle???" She shook her head NO!!!!! Like 4-5 times, left and right!!!! And not just subtly, my girl was having NONE OF THAT 40 4 oz.! Maybe it was a coincidence, but honestly, I really think she just wanted me to get it the F away from her!!!  All that being said, like 3 minutes later, after I went ON & ON about how badass she was for telling me "NO!" BY SHAKING HER HEAD (STILL IN AWE HERE!!!), she downed that same bottle in 3 minutes flat. These girls of mine & their ever-changing moods are gonna drive me to drink crazy! GEESH!

3. Lola is consistently showing she knows what's up when we put a bib around her neck or a burp rag underneath her chin. She immediately starts making a clicking noise with her tongue and suckling like she knows it is feeding time! So cool!!! Oh, how I love this girl o' mine. See the video below for a little snippet of my girl in action today, downing some cantaloupe like a boss!

4.  Lola now randomly gets B.O. in her right armpit only.  I'm not sure if this is an accomplishment or not, but it seems huge to me.  My little girl is growing up!  (Don't think I didn't Google "Is it abnormal for an 8 year old to have B.O." before realizing that it is probably the most age appropriate thing she's done her whole damn life. Ha!)  Claire didn't start getting stinky until she was 11 or 12, so this seems odd.  However, others assure me their typical children start getting funky around 8-9 years old, so it's likely nothing to be worried about.  Considering the girls don't sweat at all, I still find this B.O. vexing.  But as with every other weird ass thing my girls do, I'm choosing to let it goooooooo!  (In my best Frozen rendition!  Don't judge.  Last night Scott said to Claire, "Don't cry!" and then he said, "Don't cry for me, Argentina!" & I belted out in my best opera voice, "The truth is I never left you..." and I don't even know anymore lyrics than that, but I totally felt like "the shit.")  How the hell I got from B.O. to a title track from the musical Evita, composed by the great Andrew Lloyd Webber, NO ONE KNOWS, but once again, I wanna give a shout out to Google for giving me the 411 on that.  (Did that "411" comment make me sound old or super awesome?!)

 All I know is THIS...


Saturday, December 20, 2014

World's Tiniest Cheerleaders!

So this has been happening the past month or so...

I cannot tell you: A) how much I LOVE this team, B) how proud I am of all of them, C) how honored and touched we are that the team includes our girls in their starting line-ups, D) how happy it makes our girls to be a part of something so special, and E) how much my heart is filled with gratitude that everyone in our community is able to overlook something that much of the world views as "wrong" with our daughters and see them for the light and joy that they are.

From all of us Hartley Hooligans, we wish you the happiest of holidays.


Monday, December 01, 2014

World's Smallest Ninja!

Why yes, Daddy & Lola *are* up to their usual antics!  Behold the video that has made me laugh-so-hard-I-maybe-peed more times than I care to admit!  ENJOY!

“Ninjas don't wish upon a star, they throw them.”
~Jarius Raphel


Saturday, November 15, 2014

The Struggle

"Travel can be one of the most rewarding forms of introspection." ~Lawrence Durrell

Trunk Bay, St. John, USVI

As many of you know from following us on Facebook, Scott & I were able to take a trip to the Caribbean this month by ourselves.  This is only the second time that we have done so since our honeymoon back in 1997.  We took our first trip alone together last year about this same time, which I did not publicize for reasons I will explain later.  We went 16.5 years without taking one single trip away, just the two of us.  I have no regrets about this whatsoever.  The time was just not right until last year.  I was 100% in Mommy Mode that first 16 years... literally knowing that where I wanted to be was AT HOME with our kids.  I didn't think it was necessary or important for me to be leaving my kids for any length of time to get away with my husband.  It felt selfish and like a luxury I didn't need.  We chose to have three kids & even though our situation is different than most, we still shouldn't "need" that type of break.  Not to mention that there was physically NO WAY to get away even if we wanted to.  We didn't have babysitters, nurses or anyone else who would want to take up residence at Da Hooligan House for a week, get no sleep, care 24/7 for our 3 kiddos, and literally run *my life* while I gallivanted around the islands. The whole idea seemed more like a dream than anything.  

It wasn't until early last year that Scott & I looked at each other in our unbelievably sleep-deprived frustration & cried, "THIS YEAR WE ARE GOING SOMEWHERE.  JUST US.  NO QUESTION. LET'S BOOK THE MOTHERFUCKIN' TRIP BEFORE WE CHANGE OUR MINDS!!!!!!!"  And we did.  And it was wonderful.  And it was possible because we now have an amazing "team" in place to help us with the girls both day & night. I don't know what I'd do without them... they are FAMILY & we are SOOOOOO blessed that they are part of our lives!!!! 

It was so wonderful last year that we booked another trip this year.  We returned earlier this week from 10 days in the Virgin Islands.  Just us.  Alone.  For only the third time in 17+ years of marriage.

You might think this is where the story ends, with me sharing breathtaking beach pictures & recounting tales of wild nights in paradise as Gwen & Scott finally unwind after years of being cooped up in boring old, landlocked Kansas.  But you would be wrong.

Please understand -- and I have no idea why I feel the need to preface this with a disclaimer, but I just don't want anyone thinking I'm a prima donna or some ungrateful bitch who doesn't realize the gifts that I have both at home & while away travelling -- but I LOVED EVERY SECOND OF BEING GONE.  I loved being in one of the most beautiful places on earth.  I loved the warm weather (unlike the wind chill of 1 degree that we came home to!), sunny skies, palm trees, & pristine beaches.  I loved the one-on-one time I had with my husband.  I loved how free I felt being able to go to bed whenever I wanted or get out of the car without a 15 minute scramble to be sure I didn't forget burp rags or diapers or wipes or the spoon or bib or baby food or back-up outfits in case one of the girls pees/pukes on their clothes.  I loved having no responsibilities.  I loved feeling like newlyweds again.  I loved being able to do things we couldn't do in Kansas.  I loved being able to do things we are not able to do when our kids are with us (get your minds out of the gutters, ya' pervs! OK, maybe not.  I might mean that too!  LOL).  I loved having tropical drinks with my dinner.  I loved jamming out to reggae & island beats in our rented Jeep on a faraway island, exploring to our heart's content without having to worry about anyone else's needs but our own.  I loved the rush of snorkeling for six hours straight with stingrays, sea turtles, tropical fish, squid, octopus, huge tarpon, and 2 sharks!!!  I loved surfing in the most turquoise water in the pouring rain and getting up on the first try.  I loved sleeping in.  I loved sleeping in general!  I loved relaxing swings in the hammock overlooking the islands.  I loved being able to get ready to go out for the night in 20 minutes.  I loved dancing in the pouring rain in the middle of the street BECAUSE I COULD.  I loved EVERY MOMENT I spent there. Wholeheartedly.  Like every single day was one of the best days of my life, next to my wedding day & the three days my children were born.  I can barely put it into words what this trip -- these two trips -- have meant to me without tearing up because it was so beautiful & perfect & NEEDED, start to finish. (Too late... tears already rolling...can barely see the screen)

And therein lies the struggle... Knowing I needed this trip more than just about anything else in life, but feeling SO FUCKING POWERLESS the entire time I was there because of how intensely I missed my life here. Not to mention the immeasurable guilt I felt for LIKING all of the things I mentioned above, most of which involved me feeling FREEDOM from the stressors of life here at home.  What kind of mother am I for ENJOYING being away from my kids?  For wanting to stay for ten days, thousands of miles away from my kids while countless others have to pick up the slack for me at home?  For 6 days not being enough this time?  For being so disconnected from my kids - - they are my WORLD! - - and LIKING how that feels because I have zero responsibilities?  Do you know what a betrayal that feels like to my kids??? 

I almost didn't want to like it as much as I did. I half expected we'd go last year & it would be "enough" to tide us over for another 5+ years.  Why do you think I didn't publicize that we went last year?  BECAUSE I WAS EMBARRASSED WE WERE LEAVING THE GIRLS.  There, I said it.  It hurt me then & it hurts me still to admit that we needed this break.  It hurts me to admit how hard it is sometimes to care for two children with special needs.  It hurts me to admit that others can care for the girls just like I can.  It hurts me that I felt enough disconnect with my husband to need this trip.  It hurts me that I felt some burnout about being a caregiver 24/7.  It hurts me to admit that we now have 7 nights a week of nursing care for Lola & that I couldn't survive one more day getting less than 2 hours of sleep a night.  It hurts me to admit that part of the reason I feel guilty about leaving the girls especially is because I don't want to waste precious time I do have with them while they are still here.

But WHY??? Why are these things so difficult for me to say and accept?  And why am I beating myself up over wanting a break from my life?  (But promise me you guys won't ever for one second think that I don't completely love my life!!!!!  Because I do.  But I just cannot understand why if I love my life so much - as I do! - that I would even need a break from it at all?!?!?  I wish I could just admit that life is hard sometimes, breaks are OK because they recharge me, & I am no less of a Mom for wanting to get away once a year. Damn this Mommy guilt!!!!)

I feel a sense of weight lifting off my shoulders as I type this.  (Wish that weight was lifting off my thighs or ass instead, dammit!)  It just feels so good to process through this & really to be blogging at all, as I pretty much took a two month hiatus so I wouldn't have to "go there" with all these emotions.  I just couldn't... or I likely would've cashed in that trip insurance & stayed the F home! Trust me, I was looking for reasons to not go!  This internal guilt shit is for the birds!!!!

(For the record, the girls & Cal had ZERO problems while I was gone, aside from their usual antics. :)

I cannot tell you how good it feels to be back home.  I have so missed THIS.  

Will someone tell me why certain 15 year old boys refuse to participate in selfies with their Mamas?!?!?
Me, Cal & Cam at the WSU game last night (Only 2 of us apparently give a shit!!!  LOL)

Stand up, baby girl!  I AM SO PROUD OF YOU, CLAIRE!!!!!!!


"A man travels the world over in search of what he
needs and returns home to find it." ~George A. Moore


Friday, September 12, 2014


Behold one of the most brilliant things I have ever seen my sweet Claire accomplish...

Yes.  OH YES!  Our girl is working on kneeling!!!  I cannot believe my very eyes.  Claire continues to amaze all of us with her desire to challenge herself, to work through her increased tone/cerebral palsy, to use her body/disability to her advantage!  

I am speechless.  Yes, I know that is not a common occurrence, but today I remain just that -- SPEECHLESS.

I am so incredibly proud of you, baby girl.  You are my heart.

"That some achieve great success, is proof to all
that others can achieve it as well."
~Abraham Lincoln

Never EVER give up.  We waited 13 years for this!


Tuesday, August 19, 2014

I Will Catch You

Claire & me  ~  August 2014

A few days ago, I had a minor freak-out moment when I was trying to get a picture of Claire on the couch. Due to her high tone, her legs cross/scissor, and often times, her legs are straight out in an X formation. It's pretty rad looking, but the problem is that the tightness of her muscles have pulled so hard on her hips that they are now dislocated. The good news is that she is not in any pain from this. It probably happened so gradually that she didn't even notice. We monitor her hips/tone/body closely & work with our awesome PT twice weekly to help her with this issue. There are more drastic medical interventions which may or may not help this problem long-term such as surgery, medicines, etc. However, we can never reverse her cerebral palsy or stop her hypertonicity completely. Due to Claire's extreme sensitivities, we are not able to anesthetize her. Surgery is out of the question. Ditto harsh medicines & Botox -- our tiny girl just cannot handle it.

A few months ago we had a consult with a fabulous orthopedic specialist from Kansas City whom we adored. He too agreed that surgery for her hips or spine could be fatal. His exact words to me were that he was "terrified" to put her under for fear of losing her. Not to mention that some kids I have known who have had hip surgery had to have the surgery repeated due to the fact that the tone was never corrected. The muscles continued to pull on the hips, thus creating yet ANOTHER dislocation. I simply cannot take that risk with Claire..

(And I won't even go into details about how much it shatters me that Lola's hips are ALSO dislocated in the same damn way. Fuck these orthopedic issues. For real. Don't even get me started on the kyphosis/scoliosis shit either. Please know that I love every single dislocation, every "imperfect" curve of your bodies, sweet girls o' mine.)

So back to the story... I was trying to sit Claire up for a picture, and she had one leg bent and one leg straight. I tried to wedge her against the arm of the couch that would support her in this position, and she just arched out of it & buried her head, destroying the fabulously cute hairstyle I was intending to photograph in the first place.

So... I restyled her hair, repositioned her this time in the center of the couch, sort of wedging her adorable little teensy head between the two cushions. She got pissed as hell and tried to arch some more, but I kept her contained with bribes & singing some Lil Wayne for her. (Pretty sure the girls love him because they think he's "their people." Hint: keyword is "Lil." LOL!) I slowly scooched (skooched? skuched?! FRICK! Spellcheck highlighted all 3 words, dammit! Don't F with me!!!) her slightly to the center of the cushion thinking this might have a better result because then her head wouldn't be jammed between two cushions, thus giving her the illusion that she can arch back FURTHER. (Did I seriously just use "thus" a second time in this blog post? WTF! Does it make me sound like a badass?!) This diva is hard to outsmart, but I'll be damned if I was gonna back down!

As soon as I sat her in the middle of the couch in the center of the cushion, she actually relaxed & seemed happier there. I grabbed my iPhone like a ninja & flicked the camera button to start snapping, knowing full well that my photo shoot was gonna be a quickie. As soon as I honed in, focused & was ready to snap, I see Claire starting to literally fall to the side. I throw the phone down & grab her before she face plants on the couch. Claire's eyes widened but she stayed in that same position as she tipped over. I sat her back up, took aim again with my camera, and yet again, Claire's nose made a beeline for the seat of the couch.

I watched in disbelief as yet a second time, she didn't seem too bothered by this. I don't know if she reacted that way because she's a daredevil, because she trusts me, or because that was her initial intention - to FALL (AKA - get out of Mommy's Picture Time!). I once again caught her before she "fell" from a sitting position onto her side/face just inches below.

Now, you KNOW I love my girls as they are, where they are, and even if they stayed at this developmental level for the rest of time, I would be PERFECTLY OK with that.  Not sure why I feel like I need to make that disclaimer every time I spew out a fear/concern/worry of mine, but I do. But I think what got me the most about her falling twice was how no attempt was made to catch herself. I am positive she knew she was falling -- her eyes were wide both times & she seemed startled -- but the thought that she was unable to put 2 + 2 together, extend her right arm, stabilize herself on the couch, & stay upright made me sad. I have seen some amazing progress in Claire during PT the past year or so, and maybe that is why I still have hope that someday something as minor as her using her arm appropriately could possibly happen. I don't know...

What I DO know is that my girl is happy. There is no doubt in my mind. I really need to just follow her lead and not "go there" worrying about why her brain doesn't allow her to do _____ or _____. Until then, I will be her eyes/hands/intuition... as best as I possibly can.  I just hope it's enough & I can continue to be all she needs me to be.

My beautiful Claire, I will GLADLY catch you every time you fall, EVERY SINGLE DAY, for the rest of your life if you need me to. I love you THAT MUCH. You are my heart.

Photo shoot was relocated to the beanbag, which was positioned safely on the floor.  Claire "rewarded" me with some classic, typical teenage "PLEEEEEEEEASE PUT THE DAMN CAMERA AWAY, MOTHERRRRRR!!!!" type glares.  OMG, I love this child.  SO MUCH.

“I love you without knowing how, or when, or from where. I love you straightforwardly, without complexities or pride; so I love you because I know no other way.”- Pablo Neruda

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