Tuesday, May 23, 2017

The Freedom of Expression Comes At a Price

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There are days I certainly ache with an endless craving for comfort and understanding.  The real risk and consequence of being candid and raw about the special needs journey is that you are frequently met with criticism, judgment, and harsh comments aimed to further wound an already broken heart.  I'll likely never truly understand what motivates many to intentionally aim to hurt someone.  Maybe it's an indisposed thrill of some sort to spend energy on attempting to emotionally injure another human being - I'll never truly know no matter how much thought I give to it.  People love to take jabs at you however, especially when they sense any kind of difficultly in your life's story and journey.  It's like the world has lost touch with what it means to be sympathetic, empathetic and human.  Words can be blatantly cruel and comments can be deceptive in artificial compassion and support.  When I'm authentic in my feelings and experiences as a special needs parent what I'm often throwing out into the universe is really a reflection of a desire for connection.  It's natural to crave benevolent affection - especially when we walk in a hardened existence among insurance denials, financial trials, providers that see your child as simply another cerebral palsy head count, or a child you've simply heard of but never really took the time to know, love and adore, and when we are lacking any real consistent, genuine friendships and meaningful relationships.   Ever wish the world would wrap you up in a hug provide unwavering comfort, love compassion and understanding?  I do.  I wish it a lot. 
But what I'm often met with is back handed advice, a suck it up buttercup response, you're drowning us all in your negativity, or that I'm simply selfish because somewhere out there someone must have it harder than I do.  It becomes a contest of my pain trumps your pain.  We fail to realize that we're all on the same playing field and that pain is pain.  Whether you lost your dog who was your best friend, whether you just lost your home or a job, or are facing a divorce or a dissolution of a treasured relationship, or are coping with the challenges of special needs parenting.  Pain is pain.  It just is. 

Why should there be such consequences in being straightforward about our lives? Within a twenty-four hour period after posting about one of Noah's final appellate losses on social media, despite my every effort to take it to the very end of what I could do I was greeted with three messages aimed at inflicting further emotional distress.  One of the commenters expressed that I had a "pour man's mentality."  And that if I simply worked harder, or "got off my ass and quit mooching off the government" I could afford all of Noah's needs without needing Medicaid's assistance. 

A second commenter found that I had was being selfish for expressing difficulties when countless people lost their lives hours prior to my post in a bombing in Manchester, England and that I had no room to complain about anything. 

A third commentor expressed that I'm continually negative and that I'm drowning everyone in negativity all the time.  And that it's my fault that things are not going well for Noah and that I'm quite the terrible parent because if I vocalize any hardship in the special needs journey that I'm placing blame on Noah for it and how terrible that is.  For the record I've never placed blame on Noah for anything - but people read into whatever they choose, whether it be real or factual and make gross assumptions based on things that simply don't exist.

That's really the price you pay for putting your feelings out in the great wide open.  You set yourself up to be unwillingly attacked and blindsided by people whom you've never met, and who have no real clue about your life in any real way.   I don't know how to censor myself into other people's idea of what they find acceptable to share.  I don't know how to sit quietly in the stew of special needs pain, I don't know how not to share the incredible triumphs that can exist in our day if our child does something so remotely awesome and something they were completely physically unable to do the day before.  Discussing the reality of everything from the highest of the highs to the lowest of the lows makes me real.  It makes Noah's story real.  And if you're reading this then you in some way need to hear it or you wouldn't be reading it.  Whether I'm offering your courage to get through a hard day, or you come to learn more about a little boy who defied the odds and was granted a miracle and chance at life, or whether you need to use me as a verbal punching bag to make yourself feel better - you come regardless because you need something from what I write and share.  I'm not looking for endless popularity in sharing Noah's story or my own personal feelings about being a special needs mother. 

But kindness, support and love is forever and always welcomed, noticed and appreciated.  Strive to build others up not knock them down.  Please remember the The Three Gates of Speech:
At the first gate, ask yourself “Is is true?” At the second gate ask, “Is it necessary?”
At the third gate ask, “Is it kind?”

And if you're fancying sending me a note that's really lovely, but let's shoot for it to be kind and supportive - because every special needs mom can use more of that. 


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Wednesday, May 10, 2017

Permission to Fall Apart at the Seams

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People like to use that analogy that hard times can't last forever like a storm that eventually ends.  But, I swear to you after you join the special needs parenting club life becomes the never ending storm.  Think of it much like Catatumbo lightning storms in Venezuela, a continuous thunderstorm that has unfolded at the exact same location for 500 years, with your child being the only source of sunshine and beautiful luminous rays that peak out from the always present ominous dark clouds.

Noah is on day ten of problematic sleeping.  And by problematic I mean beyond what is not normal for him, far beyond what will always be not normal for most typical children.  When anything is remotely a little off with Noah it puts me in a place of such watch guard.  I remain haunted by words and predictions regarding his life expectancy.   The what if's have a tendency of eating away at me at three a.m. in the morning.  What if I don't hear him and he is struggling?  What if I miss that his breathing is different?  What if I miss something.  What if... 

The rest of the household seems oblivious to the nighttime stresses that Noah and I share.  The dogs sleep curled up peacefully, Luke remains nestled against his favorite stuffed orca whale and clings to his owl night light, Chris snoring off and on again but never once stirring when I get up multiple times to re-position Noah or to hold him to make sure he's still responsive all while trying to diagnose  a problem or problems I cannot see or touch or understand but that I feel are there.   Part of me festers a touch of resentment because only Noah and I share these complications together.  By the time Noah and I are both so collectively exhausted we're into the early morning hours and while Noah can continue to sleep a few hours longer, my day starts with his little brother who is eagerly awaiting the days activities just as soon as the sun comes out.  I'm not sure they make a concealer that can honestly come close to touching camouflaging sleep deprivation and the worry from my face.  Yet, I have faith that cosmetics can disguise the very real struggle written all over my face and continue to make myself presentable to the world. 

In the midst of my evening worry I still have to contend with all of the problems of the day; Noah's nutritional supplier refuses to carry a doctor prescribed drink, and apparently no other companies will supply it either due to Medicaid funding and codes.  Leaving me having to research an alternative for him to approach his physician with as a plan B.  And Plan B cannot be that I pay for it out of pocket.   A custom seating ASO appointment for Noah that is an hour drive each way, coordinating the transport of a power wheelchair he can't even use because the seating system is so small that he no longer fits into it.  Doing an evaluation with a room full of people who are completely unfamiliar to Noah who want to touch his spine, his hips, see how he moves while causing him to gag and vomit on sensory overload.  All for a determination that was visually obvious just by looking at him without the need to touch: Noah needs a new molded ASO, and something that has to be re-requested through Medicaid.  Something that will take up to 12 weeks for a decision and that could come back as a denial like everything else does rendering his power wheelchair permanently useless.  A new Asssitive Technology Professional or ATP as we refer to them as with Noah's DME (Durable Medical Equipment Provider) NuMotion, suggesting to me that I simply troubleshoot Noah's high tone by using folded up towels to prevent him from crossing his legs and to counter his sensory issues by laying soft fabric over an aggressively hard seat in his wheelchair system as he knows that Medicaid will not approve a pummel or a new softer seat for Noah.  The suggestion feels like he's rubbing the worst kind of salt into already raw wounds.  No matter how hard I try or look or wish or pray for this magical team of warriors to stand by my side and help me - it just never happens.  No one cares, no one bats an eye at Noah's pressure sores caused by bad wheelchair seating, no one seems bothered that he's doing without because of Medicaid denials, no one is ever in my corner.  I have no cheerleaders, no friends, no family (with the exception of my mother who certainly does her best to be there in any way that she can be), it's lonely and tiring and gives you the perpetual feeling of defeat, isolated and continually unaided.   And there are days when you realize just how much you lost in this world the moment you became a special needs parent. 
I come home to address emails waiting - all lined up having to deal with Noah.  I write his ATP and include pictures of items that need to be replaced on Noah's adaptive equipment.  Noah's feeder chair split the fabric at the seams which has exposed the plastic abductor between his legs that are now rubbing him raw.  The response is perhaps we need to come out to schedule a time to look at it rather than taking my word and pictures seriously.  I'm good at knowing what I can sew and fix and what I can't.  I have to be pushier and more aggressive than I like to be in my response to provoke action on the parts of others to take mercy upon me and help my child.  How I feel like my dream of having someone - anyone help me in the ways I need help is dying a slow and painful death. 

Then in the middle of me doing a remote call with Noah's speech device technicians to troubleshoot multiple problems with his device, a light bulb goes off as to what might be contributing to Noah's increased nightly disturbances and I remember that he experienced an event that could have caused water in his ears and perhaps an ear infection might be a potential factor (although likely not the only factor).   I attempt to schedule an appointment only to be put off for two days due to lack of physician availability by the new call center that continues to be a thorn in my side.  A mother that never takes no for an answer again must become less than friendly on the phone, aggressive, pushy, and borderline obnoxious to get someone to help me with a sooner appointment - something I know is available but lacking due to the right hand not working well with the left hand. 

I consent to any doctor that is available which happens to be one Noah has never seen before.  I arrive to deal with a new nurse who knows nothing about Noah's severe sensory processing disorder and despite me warning her that attempting to take his pulse ox and scan touch his forehead for a temperature will cause him to gag and throw up, she does it anyway even when I tell her to back off and give him some space so the gag doesn't turn into a vomit.  She ignores my warning and parental demand and Noah proceeds to throw up his blended pureed Panera lunch that his grandmother purchased for him.  We wait longer than expected for our appointment, and when the doctor comes in she insists that the pulse ox be taken even though I warn her that Noah will throw up.  Noah offers her a classic gag warning multiple times. The doctor says she is not afraid of a little vomit.  When Noah throws up it's not so little, and everyone should be afraid even her because Noah is an aspiration risk every time he does vomit like this.   Yet she doesn't back away, offers me a chux instead and Noah proceeds to vomit again because he's on sensory overload and no one will give him a chance to calm down and relax and get to know people who are strangers to him that he's never seen before.  Given a little time and space both of those vomit episodes could have been avoided.  But no one listens to the mom that knows her child like the back of her hand.  My expertise in my child goes without validation or recognition. 
Noah's diagnosis: bacterial ear infection or (swimmer's ear) in his left ear.  Perhaps a partial answer to Noah's increased night time difficulties.  Ear drops are prescribed.  Something Noah has never had before and I'm dreading the anticipated sensory feedback this medication will bring him. I drive home wishing I could curl up in a little ball somewhere where no one could find me until I could find a way to keep breathing.  I choke back the tears that want to come like an endless waterfall, only to realize my husband is calling me to tell me we owe hundreds of dollars in our cash reserve line of credit and that we have to find a way to pay for $433 of car repair for a broken sway bar on his vehicle.  Instantly my mind races towards the email in my inbox luring me to buy a stripped down floor model wheelchair that has zero accessories that Noah would need and knowing that it's so far fetched that I have any purchasing power whatsoever to help Noah in any capacity beyond Medicaid.  I feel bound and tied by both my hands and feet.  Overwhelming feelings if I can't even help my own son, what good am I to other parents and families that I try to assist.  And while I have all this overflowing knowledge, skill and talent I still feel so incredibly helpless.  My first instinct is to withdraw from the world which feels like it's perpetually working against me. 

I get to the pharmacy drive thru only for them to tell me they need an hour to prepare ear drops for pick-up.  So I drive Noah home and then back again to the pharmacy.  The attendant says there is a note in the system saying I need consultation with the head pharmacist.  She comes to the window to ask me what my questions might be, I re-iterate I don't have any but that their computer system seems to insist that I do when I don't. She nods and shakes her head simultaneously to reflect that she doesn't believe my explanation and looks at me like somehow I must have changed my mind about having questions. 

Without my mother's assistance both pealing potatoes and watching Luke so I could tend to Noah at the doctor's today, we would have gone without dinner being made.  Somehow my supermom skills are sliding and accomplishing everything seems to be growing harder.  All the while I secretly ache for someone - anyone to give me permission to fall apart at the seams and tell me I can sew myself up tomorrow in order to keep going, no one does.

And tomorrow I start the entire process over, perhaps with different appointments, different emails, and calls to return.  But much the same hurdles as the day before.  "I am made up of two worlds; one in which I exist to hold everyone together, and the other where I watch myself constantly fall apart." K-Piper


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.