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.

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