Saturday, January 27, 2018

When Disability No Longer Pulls on Heartstrings

Bookmark and Share
It's so cliche when they tell special needs parents that things get easier.  That's so much pure bullshit.  That's just fluff to make you feel better in the moment.  The raw and hard truth is that the entire journey is messy, complicated, and gets harder every single year.  Our cortisol stress levels are variable at best - but it's not smooth sailing when you get to age five or six or seven.   There are lots of elements that do change however.  In the beginning there is generally more support than you find in later years.  I remember back and it felt like I had so many hands reaching in to rescue me.   I had friends once upon a time that would hold church fundraisers, co-workers who rallied to pay for the thousands of dollars that it cost for Noah's flight for life bills to be transported to Children's to try to save his life when our insurance policy didn't cover it.  People fed us, restaurants hosted days to donate, people came to the hospital to visit, to pray, to hold my hand.  Gifts and prayer books poured in and served as comforting reminders that I'd find my way out of this - as I clung to the hope that my son wouldn't die.  I had people in my corner.  Lots of them.  Too many to count.  And needed every single one.  The truth is I still really do. 

And then things started to change.  The older Noah got people started to realize that all the support in the world wouldn't "cure" him or make him "better."  No amount of money in the world would fix Noah's catastrophic brain damage.  It became too hard for those closest to me to witness my pain and to see a little boy in their eyes that struggled physically.  People drifted both casually and quietly.  It didn't happen all at once.  People disappeared at their own pace dwindling until the point of there being no one else left.   And with them left all the comforting hugs, the listening ears, the support and the shoulders I needed to soak with endless tears. I was now forever alone in all this.  And it's been that way ever since. I'll grasp in the dark here and there for someone only to realize that I'm simply a stepping stone for them as they fight for their own child with special needs or until they realize the gravity of my special needs parenting and all that comes along with my life now. 

Help is no longer volunteered or offered.  People will no longer just take it upon themselves to rise to the occasion and see your struggle.  They put blinders on and let you fend for yourself.  Which resulted in me murdering my pride in an ugly cry in the middle of the kitchen floor and asking and begging for help.  It was brutal and heartbreaking much like a broken child that you know would never be whole again.  That precious Stacy has died a thousand times - all because of the hand she's been dealt time and time again. 

But despite intentionally and brutally killing of pride, the fundraisers and pleas for help were mildly successful at best, and now that Noah is nine fundraisers don't amount to any help at all.  There are a variety of reasons for that.  Noah is past the baby-stage where his sweet blue eyes tugged on people's heartstrings. His precious tenderness has grown into a little boy trapped in a body that doesn't work.  
The most successful fundraisers and help always comes when you post the tragic reality of our lives.  A picture of our child being rescued by EMT workers; carried off in an ambulance; or laying helplessly in a hospital bed.  In all of Noah's moments of crisis it's never been on my field of vision to take pictures of it or document it in that way.  The first thing on my mind is always please God just let him live, not how many pictures can I take with my cell phone and post it as quickly to social media as possible.  I'm just different in that way - even though I know that is what tugs on people's heartstrings.   I know that pictures speak a thousand words and that help will go to those who appear to be in a dire situation.   But Noah's situation is dire.  It's just how I chose to present that to the world.

Noah's needs are no less because of his age, or because I don't attach a really scary and sad picture to his fundraisers.  No less important because I am more selective on sharing the harder parts.  People see a crystal blued eyed little boy who looks "typical" in pictures.  It is such a misconception that disability comes with a physical deformity or appearance.  That the severity of Noah's disability must not be that bad if he can smile and look precious.  The reality is that Noah's cerebral palsy is the worst that it gets.  Short of having a trach and a g-tube it can't get much worse.  He will never have any level of independence.  He will be forever dependent on 100 percent care.  And a lot of stuff comes along with that.  He needs much more equipment, he needs more supplies, he needs more support than the child with cerebral palsy that can talk or self feed, or that is only wheelchair bound or one that just uses a walker but has all other bodily functions.  Noah is like having a nine year old baby. 

But none of that tugs on heartstrings.  Now that he's older even in public he's just seen as another wheelchair user.  A older boy who is adored and loved beyond measure by his devoted parents, but one that isn't suffering enough in the eyes of strangers or social media to warrant any kind of incredible heart to be his hero.  

What about Medicaid and his Waiver?  The ultimate failures in Noah's life right now.  I fight so incredibly hard for him - harder than most are capable of fighting.  I have lost everything so I have nothing else to lose but to claw and fight back. All of it making made me a very unpopular parent advocate with the State, I'm highly educated, I know the legal system well - I have a lot going for me that makes me an intimidating presence for the State and they strongly dislike that.  I'm not an easy push over and I know rules and regulations and limits all too well.  And Noah has paid the price as they continue to send me a strong message that they will continue to reverse every favorable appellate Judge ruling in Noah's favor.  It still feels so unreal that they have that legal capability.   How on earth can Medicaid override a Judge's ruling - but they can.  And no one seems to want to change legislation to block them from doing so. 

So this means that Noah goes without the simplest of his needs even down to a $50 therapy ball that was recommended by his treating therapist to the highest of a wheelchair that fits him correctly.   So I'm in a very unique category of completely alone in this.  And no amount of fighting will allow me to win at it.  It's designed and set up for Medicaid to be victorious no matter what.   It's such an incredibly helpless feeling.  We are now living with the Internet and a social-media-obsessed culture, which further adds to those isolating feelings of being disconnected.  People have given themselves permission to be distant because they can now watch you from the sidelines with ease without being an active participant in your life.  I always compare it to a car crash, where you slow down to see it but no one gets out to help.  You hope in your mind there were no casualties, but lack wanting to get involved to see if you could have resuscitated the injured.

Special needs parents never get to unpack their worries, we never get a reprieve from hundreds of emails and phone calls and mail that pour in weekly related to our child's extensive needs - which are usually problematic at best.  We have no one to hear us that is present and that kind of social media expression is met with comments like "suck it up,"  "aren't you over it yet,"  "you're whining,"  "all you do is complain" - which are of course responses to make others feel better about their absence in the set of circumstances, but further adds to the heaviness that you carry in your heart. 

“Certain voices hold this odd pull on our heartstrings. They are like sad oboes or something, something that makes you want to throw all your money at the radio while yelling, "I love you."  But what happens to those of us who have lost our voice?


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

Saturday, January 20, 2018

Division Is Not Acceptance

Bookmark and Share
In December we were invited to an Christmas event.  I was overly excited.  I planned cute formal outfits for both boys.  I anticipated and was dreaming about the expressions on their faces; joy, happiness and the awe of childhood Christmas all wrapped up as if it were a perfect gift with a sweet little bow.  The morning of the event however we were notified that the event center was no longer going to allow families with children in wheelchairs to sit all together.  We'd have to be split up.  Noah would only be allowed one caregiver to sit with him in ADA seating - the rest of his family and respite attendant would have to be seated elsewhere.   I was really in shock that an event center could think that was acceptable.  Typical families are not divided and all sit together.  Why not families who have a child in a wheelchair?  A family is a family. 

We inevitably wound up having to decline the invitation as much as it hurt for me to do that.  Noah is a all hands on deck kind of kid and more hands the better when it comes to an unexpected crisis or sensory processing episode.  Splitting up isn't an option for us.  Not to mention I would never be able to see the joy in Noah's face or hear the laughter in his voice, or his expressions or be present in that moment with him.  I would be cheated out of all of that leaving him behind to sit with only his dad while I am divided from them, not to mention risking his safety if only one person was with him.  I marinated in sadness and regret and the realization that this world wants to make very little efforts in including us in the ways we need to be included. 

Today is the International Day of Acceptance (January 20th).  The goal to embrace diversity, educate your community, and empower each other.  It's so hard to embrace diversity.  It's an uphill battle every single day.  Being different isn't good.  Being different gets you separated as a family.  Educating your community?  Doubtful.  In the minds of others they think they are doing an excellent job of being mindful of ADA rights, and they pat themselves on the back for supporting certain members of the community - perhaps those with disabilities and illnesses that don't require the use of a wheelchair - yet we're still not all on equal footing.  Certain conditions or diagnoses are more favored in the community than others.  In a world that penalizes you if you have a child in a wheelchair - a community that makes you feel "less than."

I thought perhaps this was a fluke.  That perhaps one venue had incredibly unfair rules and expectations for wheelchair families.  But that appears not to be the case.  Families report to me that this is happening universally with movie theaters, sporting events, concert venues, and performing arts.  That across the board event centers are hiding behind this excuse they don't have enough wheelchair seating to allow families to sit together - when really it should be like any other event.  When seating is sold out it's sold out, rather than making the policy to split up families.   Division is not Acceptance.  

Acceptance is the recognition that families are deserving of staying and being together just like typical families.   Making a policy that prohibits an entire family from sitting together is unconscionable.  So, today on the Day of International Acceptance ask yourself this question:  What are you really doing to make sure that you are fully accepting and embracing the disability community and their family as a whole?  

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

An Ocean of Dreams: SeaWorld San Antonio

Bookmark and Share
Because of Noah's tremendous physical challenges he requires extra attention and care.  Sometimes that is a really hard thing to balance the unique needs of each child.  I often feel like I'm living in two different worlds; a special needs world and a typical world.  Caught between the best of both beautiful worlds.  Luke, however at his tender age often feels a bit jealous to the attention that Noah often receives throughout the day, and he craves sometimes just a cuddle when I'm spoon feeding his older brother.  The guilt is real and it's big.  Because you're trying to split yourself into two halves to accommodate and balance the needs of both children.

When Brave Young Hearts set up Noah's adventure trip, we never expected that they'd gift Luke with his own special day as well to SeaWorld.  Luke has had a rather strong love for ocean life - and in particular Orca Whales.  The child eats, sleeps and breathes anything orca whale related.  So SeaWorld was a really big deal to Luke and the entire family.  Brave Young Hearts even coordinated a Dine with Shamu event for us and even went out of their way to contact the chef directly to coordinate arrangements to have a meal pureed for Noah at the park. 

To watch the light in Luke's eyes as soon as he hit the parking lot made me teary - because I knew he was experiencing his own dreams.  In a way your dreams have to die when you have a child with special needs but you never want those dreams to die for either of your children.  Their happiness regardless of the challenging circumstances continue to be on the foremost of your mind and heart.  I never want Luke to feel cheated by the family dynamic that he was born into or to feel secondary to what is happening around him.
Luke very well could live at SeaWorld.  He was so at home there.  A place that speaks his language.  Dining with Shamu was the most amazing experience.  The trainers were so hands-on and it was such an up-close and personal experience.  They talked with Noah (knowing he couldn't talk back and Noah spoke the best he could with his laughs, squeals and bright blue eyes).  And Luke was so super quiet.  He just listened and absorbed it all like a sponge.  The chef pureed a dish of mac and cheese and chicken for Noah and they went out of their way to have a slice of cheesecake on hand just for him.  I cannot tell you how overwhelming it is to have strangers go out of their way to help you and make accommodations and fulfill usual requests so that you can be included like the rest of the world.  Brave Young Hearts made it all so perfect.  Every detail, every little single magical moment.  They looked out for us in all the ways that I wish the everyone would.
The trainers must have felt our tremendous awe of the experience and quietly invited us down to the tank for a private meet and greet with the Orca Whales.  It was a surreal moment to be that close to them.  Only glass separate you from them.  Their eyes spoke volumes of understanding and tenderness.  One of the largest species on earth dubbed a killer whale - yet they felt so majestic and loving in that moment.  We were able to get some pictures up against the tank with three of them - the mother and two of her babies.  A big thank you to Doug, the trainer at SeaWorld (While I know this blog is far from timely) I hope you find your way back to Noah's blog to know how much you gifted both of my boys that day.  And you deserve such mention for your kindness that day.  I won't forget you.  I never forget anyone that touches our journey in such a special way.  Thank you for all the memories and the smiles that we'll treasure a lifetime.
SeaWorld is rather big, and we must have walked it three or four times that day back and forth between events and exhibits.  We were unable to see the dolphin exhibit that day.  It was closed for weekend maintenance, but we were able to see a couple of them swimming out in the open which was still neat.  Noah loved all the shows, he beamed with laughter and smiles.  Luke was in his element - so much so that we worry that Luke is going to grow up and find a place to live near the ocean...  he's very passionate about sea life.

"You can't cross the sea merely by standing and staring at the water. The sea, once it casts its spell, holds one in its net of wonder forever."


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