You’re Not Missing Out. You Just Didn’t Want to Play Reindeer Games

There is a particular kind of magic that happens when special-needs moms get together. We understand things that are difficult to explain to anyone else. We can finish each other's sentences, laugh at things other people wouldn't understand, and talk about the realities of caregiving without having to provide a ten-minute backstory first.

And sometimes, those gatherings look like retreats. Weekend getaways. Pajama parties. Girls' trips. Group vacations. Photos of moms smiling together, enjoying uninterrupted conversations, wearing matching pajamas, and getting a little time away from the responsibilities that fill their everyday lives.

And that's wonderful.

Truly. If a mom gets to take a trip, reconnect with friends, sleep through the night, or spend a weekend with people who understand her world, I hope she enjoys every second of it.

But I also think there's a side of this conversation we don't talk about enough.

Not every special-needs mom can leave her child. Not every special-needs mom wants to leave her child. And not every special-needs mom considers spending time with other special-needs parents a vacation from special-needs life.

Those are three very different things, and all three deserve a place in this conversation.

Some moms simply can't go.

For many families, leaving isn't as simple as packing a bag, arranging for someone to watch the kids, and heading out the door.

There are children whose medical needs require specialized knowledge and constant attention. Children who cannot communicate when something is wrong. Children whose positioning, feeding, medications, seizures, breathing, or other care needs cannot be handed off to just anyone.

There are families without a trusted backup caregiver. Families who cannot afford respite. Families who have spent years trying to find someone qualified, only to discover that finding someone who is willing and finding someone who can safely provide the care are two entirely different things.

And there are parents who are the only people who know all the little things that keep their child safe and comfortable.

For those parents, leaving isn't a matter of wanting it badly enough.

It isn't a matter of prioritizing themselves.

It isn't a matter of being brave enough to let go.

Sometimes, the logistics simply aren't there. Sometimes, the risk is too great. Sometimes, the person who would need to care for their child doesn't exist.

And watching other moms leave for a weekend doesn't magically change any of that.

Some moms could go, but don't want to.

This one matters, too.

We have become so accustomed to telling caregivers that they need a break that we sometimes forget to ask what a break actually looks like to them.

We've turned self-care into an assignment. Respite into a prescription. Time away into a measure of whether someone is taking care of themselves properly.

But what if a mom doesn't want to spend a weekend away from her child?

What if she enjoys being with her child, even when caregiving is exhausting? What if the idea of leaving creates more stress than relaxation? What if she has worked hard to build a life that includes her child, and she doesn't want to spend her limited free time pretending that part of her life doesn't exist?

What if she simply doesn't want to go?

We need to stop treating that answer as evidence that a mom is too attached, hasn't learned to let go, or doesn't understand the importance of self-care.

Some of us would love a massage, a quiet afternoon, a full night's sleep, or a little time to ourselves.

We just don't necessarily want a vacation from our children to get it.

And there is a difference.

You can love your child, love your life with your child, and still acknowledge that caregiving is hard. Those things are not mutually exclusive.

And then there are the moms who don't consider a retreat a vacation.

This is where I think things get particularly interesting.

For some of us, spending a weekend with other special-needs parents would be wonderful. We'd love the laughter, the shared experiences, and the opportunity to connect with people who just get it.

But would it feel like a vacation from special-needs life?

Maybe not.

Because special-needs life isn't simply a collection of responsibilities we want to escape. It's also our relationships, our routines, our children, our joys, our worries, our advocacy, and the realities we carry with us wherever we go.

Being in a room full of people who understand our lives doesn't necessarily mean we want to step away from those lives.

And sometimes, being around other special-needs parents can mean talking about the very things we spend all day managing. It can mean discussing services, medical concerns, school struggles, funding cuts, caregiving, and the future.

That connection can be invaluable. It can be healing. It can be fun.

But it isn't automatically a vacation just because everyone in the room shares a similar life experience.

Some of us might prefer a family outing. Others might want a quiet day at home. Some would rather spend time with friends who have nothing to do with disability, caregiving, or advocacy. Some want to bring their children along.

And some genuinely love the retreats and pajama parties.

There is room for all of us.

Social media has a way of making us feel like we're missing something.

You see the pictures.

The matching pajamas. The group dinners. The retreats. The weekend away with women who understand. The smiling faces and the memories being made.

And even when you're happy for those moms, you might have a moment when you wonder what it would be like to be there.

Not necessarily because you want to go.

Maybe it's because you wish you had the option. Maybe you wish someone could safely care for your child. Maybe you wish your circumstances were different. Maybe you wonder whether everyone else has found a community you somehow missed.

Or maybe you look at the pictures and think, That looks nice, but I'd rather be home with my kid.

All of those reactions are okay.

You can be happy for someone else and still recognize that her opportunities aren't your opportunities.

You can admire the photos without wishing you were in them.

You can feel a little left out without actually wanting to participate.

And you can decide that something isn't for you without needing to justify your decision to anyone.

Someone else's beautiful experience does not have to become your personal checklist of things you should be doing.

You don't have to play reindeer games with the other reindeer.

Remember Rudolph?

The other reindeer had their games, their traditions, and their little circle. Rudolph wasn't included because he was different.

Sometimes, in the special-needs parenting community, we can accidentally create our own version of those circles.

The retreats. The group trips. The pajama parties. The private gatherings. The events that become shared memories for the people who attend.

There is absolutely nothing wrong with creating those spaces. Moms need community. Friendship matters. Getting together can be a lifeline.

But being a special-needs mom doesn't mean you have to participate in every group activity to prove you belong.

You don't have to leave your child to demonstrate that you prioritize yourself. You don't have to attend every gathering to demonstrate that you value community. You don't have to want what someone else wants. And you certainly don't have to measure your friendships, your happiness, or your success as a caregiver by how many retreats you've attended.

Sometimes you're not excluded. You're simply living a different version of this life.

And sometimes, you aren't missing out at all. You just didn't want to play reindeer games with the other reindeer.

This isn't about judging the moms who go.

Let me be clear: This is not a criticism of the moms who attend retreats, take trips, enjoy pajama parties, or spend a weekend away.

Good for them.

I hope they have wonderful memories. I hope they laugh until their stomachs hurt. I hope they get the rest and connection they need. I hope they come home feeling refreshed, supported, and understood.

They deserve those experiences, too. But so do the moms who can't go. So do the moms who don't want to go. So do the moms who would love to go but cannot make the arrangements work. So do the moms who would rather spend that time with their children. So do the moms who find their community in one-on-one friendships, online conversations, family outings, or quiet moments that will never make it onto anyone's social media feed.

We can celebrate one another without assuming that everyone wants the same things or has the same choices.

We can create community without making participation the price of belonging. And we can recognize that a photograph captures a moment, not the circumstances, sacrifices, or preferences behind every person's life.

There is no single right way to be a special-needs mom.

Some moms need to get away. Some need to stay close. Some need a room full of people who understand. Some need a room where nobody mentions caregiving at all. Some want the matching pajamas and the group photos. Others are perfectly content in their own pajamas at home.

None of these choices tells us who loves their child more, who is coping better, who has built a healthier life, or who is doing this whole thing right.

We all have different children, different support systems, different resources, different responsibilities, and different ideas of what brings us joy. We don't need to turn those differences into another competition.

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

They Are Not All Your People

Years ago when I started a handful of special needs parenting support networks and sites it was a different world.  The social climate was very different. I'd blindly take on strangers onto my personal social networking.  I believed if they found me whether that be through mutual friends, Noah's blog, or social networking or my various groups and sites that they'd find commonality, advice, comfort and assistance.  I figured if you had a child with a disability you were naturally a part of my tribe.

But, I was so wrong.  Just because a person has a special needs child, doesn't automatically qualify them to be a part of your tribe.  To automatically deserve to be in your inner circle.  I had to learn this the hard way.  First with little slow lessons.  The occasional off-the-wall special needs parent that went rogue and decided to post inflammatory and intentionally agitating remarks, some that intentionally came to peaceful places to instigate drama and conflict.  Some can't get past a very now competitive nature, a sense of jealousy over who's child is doing better.  I naturally give people too much rope.  It's in my nature.  My very DNA.  You see I've been that type of too loving, too forgiving, and too trusting rather my entire life.  And when Noah came along perhaps those personal traits actually grew stronger because then you start reinforcing it all with not wanting others to have to go through what you went through you leave yourself even more open.  So you fall into a roll of the rescuer, the confidant, the advisor.  Many times I'd even put others ahead of my own interests, my own well-being, my own set of life's circumstances if I could aid another.  I didn't need thanks, I didn't need any kind of affirmation - it was just more of me knowing I was making a difference in some way in another special needs parent's life. Or at least I led myself to believe that.  I'm sure in many cases I was simply used a stepping stone for a lead of help or avenue.

Not all special needs parents are on the same team anymore.  And I can't tell you the exact moment of that epiphany for me, I just know it to be true.  Mommy wars are exceptionally vicious these days, support groups have turned into who knows better, who knows more or even a dictatorship on how you should parent your own child, the therapies you should be doing, the treatments you should consent to.  It's often clicky, immature, hostile and unkind.  And trying to manage these really aggressive personalities puts me in the line of fire more frequently than I wish it did. I learned the hardest lesson over the course of the last couple of years. And although it's not something that should be discussed in the context of Noah's blog, it did stem from the belief that I had that all special needs parents were inherently good, and if there was something "off" that I'd chuck it up to typical special needs parenting stress and strain.

You can't assume that all special needs parents are going to be "your people."  Not all of them have good intentions, not all of them are on the same playing field as you are.  And no matter how much you wish to save someone from themselves, you simply can't.  And I wish I had understood that much earlier on.  If you find yourself in a situation where it feels very much one sided, that this support isn't a two way street, the comradery feels a touch sour, or abusive, or alarming, you have to realize that these parents regardless of having a special needs child aren't a part of your tribe.  To hold them in a close space could be detrimental and even dangerous to your overall well-being and safety.

Our personal space as special needs parent is often fragile.  I refer to us a bit like the walking wounded.  We can function as if we've got it all mastered; the sleepless nights, the insurance battles, the fight for services, the lack of benefits, the financial strain, the worry and fear about our child's life expectancy, watching them struggle, watching your entire family struggle.  All of that can leave us with a vulnerability.  We can have that door cracked even so slightly for another special needs parent to have the power to make you feel small, powerless, and find a way into your life that they shouldn't have otherwise been entitled to.

Just because someone has the same dynamic that you do, that shares the journey of having a child with special needs, doesn't give them exemption from filling out that invisible application to see if they have earned the right to be a part of your inner circle.  Don't just accept applications because you're lonely, because you feel like no one cares, or because you need that desperate virtual hug from another person.  Chose your applicants wisely.  Know if they are worthy of your trust, of your care, your concern, and likewise if they have the very potential to be there for you too.  Special needs tribes and friendships should be a two way street.  Don't be afraid to ask for some character references.  If someone sends you a mutual friend request, ask another friend is that a good person? How are they with you?  Do you even know them all that well? 

Protect your space.  If someone comes at you or rubs your wrong, follow your intuition.  Block, unfriend, do what you need to do to protect that safe space. You don't automatically have to keep someone or be friends with someone just because their life mirrors yours.  Not all special needs parents will be your people.  Pick your tribe carefully.

Love,




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

December Pain

Luke, as most growing children do have an innocent curiosity about them.  He thinks absolutely nothing about blurting out "tell me about Noah's first Christmas" at the dinner table - nor should he.  A question that shouldn't be a big deal for most, feels like being hit with a giant unexpected boulder out of nowhere.  Those questions - those unexpected questions that you just either aren't prepared to answer or don't want to answer, or even a mixture of both.  Chris took the lead, much to my relief.  I didn't know where to start.  The pain inside me says let's skip to the easy parts, the hard parts need not be mentioned for the sake of all involved.

"We celebrated Christmas late," Chris explained.  He went on to address Luke's puzzled expression, with a follow up that Noah was still in the hospital at Christmastime, so we celebrated in January when we got to bring him home.  Luke seemed confused on how one could celebrate Christmas in January when it should have been over.

In my mind I'm pushing down memories, terrible ones as the two of them converse.  The kind like where it all flashes before you again, the priest, the rosary, that call saying he's not going to make it through the night, the demands for a blood transfusion to try to keep his organs alive because every part of him had been so deprived of oxygen - the parade on television, being alone at the hospital without anyone, wondering if my husband and son were fighting hard at another hospital, wondering if I would even make it through any of it.  None of that could ever be explained to a sweet eight year old child at the dinner table.

I appreciated Chris skipping all of that to just explain we delayed Christmas for Noah.  Chris no more wanted to dive into the complexities of pain than I did.  Some traits are probably specific to how parents like us process continual and ongoing pain - because that's really what it is, ongoing.  And some of it could be that we've learned this way of suppressing past pain so we can get through each new day.

It bothered Chris in the same way it did me.  I could tell.  He made an off the cuff comment not even an hour later saying at least Christmas would be over in one more week. Luke asking him to build a gingerbread house and Chris saying lightly and softly with a retreating voice, "not tonight." I know... perhaps in the same way Chris knows the month of December is just hard.

It's really almost hard to even put into words sometimes, that tug of war with being so incredibly joyful about Noah and his life, and the fact that he's turning eleven in three days.  A milestone in which neither of us thought we'd ever see.  Eleven.   How beyond blessed we are for eleven amazing years with this beautiful little boy. But it's that tiny tug that creeps up when you least expect it, the tug that says it could have been different, that tug of guilt that plays "what if" with my soul.  The regret that I didn't know my own baby was in distress, that I couldn't save him from this forever fate.

December pain exists for so many families, Christmas for us is very complicated.  We are in a season that is naturally supposed to be sprinkled with joy and magic, and we're pushing through what sometimes feels like a perpetual emotional blizzard.  We are neither between Grinch or Fa La La La - but in this sense of feeling like you can't catch your breath.  Christmas cards go unopened, bills stack on the counter, gifts that need to be wrapped feel like they are screaming your name and you just want to see it through.

December can feel like onion layers at times, SSI battles, Medicaid appeals, durable medical equipment appointments, credit card disputes, therapies, private battles, and you're navigating circumstantial things with this pain.  And then there's the parts that are still overwhelming but in a good way, the boys having breakfast with Santa, seeing the excitement that exists in both of their eyes, North Metro Fire Department coming to celebrate Noah's eleventh birthday --

January is right around the corner I tell myself.  Hold on until January and some of this pain might get packed away just like the Christmas decorations for another year.  Stored and packed away in a little box that is in my heart.

Love,

 







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

Dear Special Needs Parent, I Sit Beside You At Christmastime -

I hear your stories.  You see they often echo some versions of mine.  I sit beside you in the pain, the loss, the grief, the sadness and that longing that things were different.

It's a side of the holiday season no one discusses.  In a time where we are supposed to feel magic, joy and happiness we're feeling regret, blame, misplacement, worry and fear and broken-heartedness.

I sit beside you as you tell your story about how you tried to pick out the perfect Christmas tree and how forlorn and beside yourself you were because your child had no interest in it.  How you sat with your tears crawling from the sides of your eyes trying to disguise how you wish he was not non-verbal and unable to help decorate the family tree.  How you had to watch your typical child place the star on top of the tree, knowing your other child will never be capable of that.

I sit beside you as you mourn the loss of your child that passed away four months ago.  I see you post daily in support groups about your continuous heartbreak and profound grief.  I sit beside you in the moment of the piercing sound of Christmas music in stores, as you glance at a bedroom that you can't bring yourself to change or touch, to not want to decorate or bake cookies because it feels like a betrayal to the child you so desperately miss.

I sit beside you when you're at a toy store feeling so lost because you know that nothing in that store is appropriate for a child that cannot sit, walk, talk, crawl or self-feed, and you feel like all eyes are on you with a child in a wheelchair knowing that people feel sorry for you and are secretly relieved they aren't you.  I sit beside you as you quietly shrink inside and hold back the tears that inevitably fall upon your steering wheel when you get to your car.

I sit beside you in the awkward silence that your extended family displays, as a family in-law criticizes you for the lack of progress and recovery your child has made this year.  You cringe and bite your tongue and hold fighting back because you're so wounded that family could be so cruel and imply you aren't doing enough - not trying hard enough to find recovery for your child.  Feelings of blame and fault fester as you pour egg nog into glasses with a smile trying to pretend you're okay.

I sit with you as you ache for your child to have the physical abilities to open and unwrap Christmas presents under the tree.  How you patiently hold her in your lap assisting her gently and making sure that she knows it's okay that she can't do these things because you still love her with all your heart and then some.  You feel so protective and proud that she's still here with you that her not being able to open a present feels obsolete in the bigger picture of the blessing.

I sit with you as you pour your heart out and vent your financial frustrations that you can't keep up with the demands of out of pocket therapy, medical, equipment costs stacked up against needing to provide Christmas gifts and food for your family.  I sit with you, as you swallow your pride super hard as you seek out assistance from food banks and non-profit organizations assisting families like yours at the holiday season.

I sit with you as you crumble inside because you over hear another mom bragging about how she made brownies for her child's school Christmas party, while you are getting your double shot latte.  You feel inadequate and helpless and are doing all you can to stay on your feet after an all-nighter with your child who has special needs and you think to yourself will any of this get any better?  I sit with you as you camouflage how tired you are, and how you don't want anyone to see you are less than brave, less than courageous facade.  I sit with you, as you just want someone to hold you in that uncertain and scary place of never knowing if you will have a tomorrow with your child.

I sit with you as the timing of another diagnosis hits you in the middle of Christmas decorating and feels like a natural disaster has taken hold of your soul.  I sit with you as you throw an entire box of glass ornaments against the wall and into the fireplace with hysterical screams of pain only angels can hear.  I sit with you knowing that things may never be okay or normal again.

I sit with you as you hold that tiny hand of a precious child you brought into this world as they lay helplessly in a hospital bed recovering from another necessary life-saving surgery.  I sit with you as you beg for prayers in all directions and ask God to spare taking your heart and will to live away.  You're stoic in the moment, and unwavering with hope and faith, but deep down your only Christmas wish is just to be home safe and sound to be able to celebrate one more Christmas together.

I sit beside you as you have to decline holiday party invitations knowing that your child's sensory processing disorder could never handle it and that you don't have any respite for a date night with your spouse.  I sit beside you as you feel lonely, isolated and feel like life is standing still for you and revolving for everyone else around you.

I sit beside you because no one else will.  I sit with you in the silence and everything in between.  I sit with you on the stormy nights of uncertainty.  I sit with you because we're all in this together in a place we never thought we'd be.  I sit with you because Christmastime is hard.  I sit with you because it's okay to say that out-loud.  I sit with you in comfort, love and light.

Love,



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

A Family of Miracles - Brystal Sonoma's Story

Today marks the one year anniversary of the brutal and vicious attack of one of our beloved Cairn Terriers, Brystal Sonoma.   She was in the comfort and safety of her backyard when a coyote jumped the fence.  Brystal is such a soft soul.  Both of our cairns have qualities specific to my personality (as most dogs do).  Hollie Edelbrock is brave, protective, loud, loyal and loving.  Brystal is tender, wants to make friends with everyone and anything, she wants to lick your wounds, and is a natural healer and most of all trusting.  That trust allowed her to fall pray to a Coyote.  Hollie's instinct was to run for safety, Brystal's was to run towards unknowing danger in the form of what she thought was a friend.

Brystal's jaw was ripped at the hinge and broken in three places, multiple puncture wounds throughout her small and fragile neck.  Her jaw bleeding profusely hanging from her head, but still had the wherewithal to run despite her severe injuries into the house and under a bed seeking safety to save her own life.  I called the nearest emergency veterinary clinics, at 7pm at night they all denied me care due to being too busy.  I told them I was coming anyways and that I would not let them turn me away.

Brystal was clearly in so much pain, shaking, in shock and suffering from tremendous trauma.  But the look in her sweet eyes said nothing but please help me and that I'm sorry.   She was sorry that she was in this position, to no fault of her own.   She paced back and forth, breathing heavily through the pain.  It felt like it took forever to get her the morphine she needed to ease her pain until we could truly assess the extent of her injuries.  The emergency clinic worked fast, xrays were done on the spot - the prognosis a bit grim.  She was stabilized overnight, but her injuries were so extensive that no local vet could assist.  The vet didn't give us many options or hope, it was rather the secretary who whispered take her to VRCC - Veterinary Referral & Critical Care.  And told us they would be able to help.  The drive was super far, and my husband and I left Noah and his brother with respite, and made the long hour drive there.

They assessed her quickly and made the determination that they thought that they could fix her - that she had the small potential to survive.  But it would come at a great cost.  It was already $2,000 to get it through the night at the emergency clinic, we were facing another $4,000 for life-saving surgery of repairing her jaw, and then another $4,000 after that for reconstructive internal mouth surgery, and bone grafting.  No one wants to hear that, especially when you are a special needs family who is already financially struggling with out of pocket medical, therapy and equipment expenses not covered by insurance.

But we believe you can't put a price on a life - not even a dog's.  Every single life should be fought for - and God willing you figure it out as you go. We consented to the surgery and the costs and less than two hours later Brystal was in reconstructive surgery.  We sat, we waited.  We stayed until she was out of surgery and it was a success.  They drilled through her jaw with an exterior x-fix, and braced the broken jaw and placed it back in place.  She looked terrible, and the device looked heavy and uncomfortable.  But, we were far from out of the woods.  The chance for infection high, we'd have to figure out how to get her to eat - and stabilize her for the next four months until she could heal and have additional surgery to remove the x-fix and then reconstruct the inside of her mouth with bone grafting and tooth removal.

Brystal is a non-complainer.  And her tolerance for pain much higher than our other cairn terrier.  Her will to live also significantly stronger than what I think our other cairn could withstand.   If any dog had a chance it was Brystal.  The world's smallest fighter.

I've seen that same fight drive in Noah.  That will to live.  That I will fight at any cost to be here - even if it's not perfect.

I was no stranger to that fight drive, and so I made the decision to fight alongside and do what I could.

It was a very hard first few months.  Brystal wouldn't eat, I was forcing syringes full of water to keep her hydrated, and ultimately had to resort to pureeing all her food and syringe feeding her that too.  Slowly she'd eat strange things like tiny amounts of canned tuna, or sliced deli turkey.  We tried every soft dog food brand on the market, I must have spent hundreds of dollars trying and trying some more.  I tried to put the costs out of my mind and just do what had to be done.  I know we were sinking ourselves financially even more by making the decision to save her life.  But she was family.  No one gets left behind.  Not even the family dog.

She'd have good days and bad days.  The bad days were super hard as I'm caring for Noah and then turn my back to see blood dripping all over the floor feverishly from her mouth.  Multiple emergency trips back one hour each way - determined that the x-fix had gone through several teeth and was now protruding into her tongue so every time she moved her tongue it would be punctured and bleed.  They could do nothing to prevent that or it would harm the stability of the x-fix.  So, I'd be mopping up trails of blood for months on end in addition to carrying for Noah's needs too.

I never once thought of any of it as an inconvenience or burden.  Not Noah - not Brystal.  Like a well-oiled caregiving machine I did what had to be done.  Three times a day forcing medication, three times a day cleaning her x-fix that was crusty from blood and fluids that leaked out of open drill sites on the exterior of her mouth, faithfully applying saline and antibiotic ointment.  It felt touch and go, and I did a lot of praying that we'd get through it.

And in April of 2019, Brystal had finally healed enough to have the x-fix removed, but we weren't out of the woods yet.  Two more surgeries were in her future.  She'd have to be sedated for the removal, and then was facing internal mouth reconstruction two weeks later.  She came through the removal well, we were still guarded. And two weeks later seen another specialist to reconstruct her mouth. She lost almost all her teeth, many from being damaged in the attack, many from being damaged as they drilled into her jaw with the x-fix to save her life.  But she came through both, and with amazingly high spirits.

This dog is really a true testament to resilience and how much a life can withstand if they really want to fight to be here.

By the end of it our bills collectively were over $7,000.  Most of it was put on credit cards, but it ultimately resulted in us having to refinance our home over the summer.  We have no regrets.

Today, Brystal is thriving.  She acts much like the energetic little bouncy puppy that runs and skips along like a baby bunny would.  She's remains a delight to have, her spirit a reminder that you can get through the worst that life can give you and still find a happy ending.   Brystal will celebrate her 14th Birthday in March 2020.  And her age was never a factor for us saving her life.

We know that not everyone could understand or even agree with the decisions that we made to save her life, and that's okay with us.  Having a child like Noah, and having to fight for his life I think left a mark on us.  And so when someone tells you there is hope - you fight for that hope.  God will see you through, it may be incredibly hard and you may not know how you're going to make it happen or get through it all.  But, you will.  You just have to have faith.

So this Thanksgiving we are incredibly blessed to still have our little Brystal with us.  She was granted more time to stay, and we are so grateful that we more days with her.  Believe in Miracles - miracles may not come easy - but they do happen.

Love,

 


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

Looking Back

Maybe it's part of the human condition that purposely tries to block out all the bad.  If we dwell too long in the hardship then we lack the ability to properly move forward.  But occasionally, as life often does - it will remind you time to time of the past.  Sometimes you have a profound appreciation for how far you've come, the obstacles you've conquered, pride in perseverance - and other times sadness that you ever had to be in that position in the first place.

I've been on this special needs parenting journey now for more than a decade.  The past and present both bumpy.  In the early days I didn't really have any clue what I was doing.  I was lost.  Completely lost without a roadmap on how to navigate anything.  Therapies, appointments, bad news, how to process even a multitude of emotions that hit you simultaneously - the financial strain, the sleepless nights, the endless worry - and the profound adaptation and acceptance that your life will never have any sense of the normalcy it once did.

I got an email today inviting Noah to receive a letter from Santa through a non-profit organization we used when Noah was days old called There With Care.  They are an organization that coordinates various types of help.  Noah was sent home on hospice of sorts - the Butterfly Program.  A team of people assigned to you that you call to assist you with arrangements when your child passes away, and alongside that came a There with Care referral.  I couldn't return to work, ultimately resulting in my resignation of my decade long legal career, I lost my transcript business because I couldn't keep up with the demands of running it while caring for a neurologically distraught baby who's disabilities became more apparent with each growing day, and voluntarily gave up assisting with a nursing call center in the middle of the night. I found myself instantly with large bills that Medicaid didn't back date for flight for life, all the while trying to figure out how to feverishly pay our mortgage and other bill obligations on one income.  I wasn't present in the moment.   My heart was blown apart, my world felt uncertain, and I kept focused on just simply doing everything within my means to keep this precious little boy here on earth with me. 

I had forgotten about There With Care - although they serviced us for the first year, they brought us groceries, they provided meals, they gave Noah baby gifts, and baby supplies that we needed. It's odd how we don't really forget, but that we put things out of our mind - to move forward with the next chapter or the next challenge. Had I of not received that email invite to have Noah receive a letter from them, I'm not sure that they would have crossed my mind.  Not even in the capacity to recommend that resource to another family.  Perhaps we block out such things for self-preservation or because we are simply so overwhelmed that we're trying to get from one point in our lives to the next.

I had filed it within myself long, long ago.  A place perhaps that was dark and irresolute. I'm not sure what I would have done without someone just navigating all of those types of things on our behalf in the early days.  It was like I was present - but not fully present at the same time.  Memories can be interesting like that on the special needs journey.  Where something can just instantly remind you of a moment in time.  And then again sometimes things come full circle, a humble reminder of all the hard places you've been and how blessed you're still standing after all of it.  Looking back is harder for me than looking forward.  And looking forward is still very scary too. 

Never did I ever imagine that the very organization that was our life-line in the beginning would wind up sending my sweet Noah a Christmas letter from Santa ten years later. Blessings never forgotten, and blessings still yet to be received.

 Love,
 

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

Raising Dion: Disability Hit and Misses

I was really excited to watch the new series Raising Dion on Netflix.  Besides personally knowing the little girl who plays a supporting role in the show, I was very pleased that the show cast a character that both has a disability in real life and in the series.  Sammi Haney, plays a little girl named Esperanza, who is a friend of the main character, Dion. 

The premise of the show is a boy that has the sudden onset of super-natural abilities, and the complexities of having those "super powers" as a child learning to navigate them, and how his widowed mother learns to cope with her child now being a very different little boy, than the one that she was familiar with.  The show introduces Sammi's character rather early in the series which I was glad to see. 

However, my disappointment grew with each additional episode.  The story line was pretty predictable and felt like almost like a copy-cat to most super natural television these days. The acting from all the children was strong and their chemistry matched well with each other. Watching Sammi act was much like knowing her in real life.  She's just naturally this charismatic sweet child, and you can't help but fall in love with her.  She's a child that exudes positive energy and happiness.  If it was dark out she'd literally light it up with her personality like a glow stick, so I'm not surprised that she was chosen for this role.

That's part of the reason I'm let down with the series.  They had this huge opportunity to showcase her more, and she became almost hidden in the background, with what felt like a guest appearance here and there.

The character of Esperanza is depicted as a child that sees herself as "invisible." Her peers primarily ignore her, in fact even Dion finds her annoying and through the majority of the series does his best not be associated in any way with her as if she's an embarrassment.  It isn't until she serves Dion in attempting to retrieve his asthma inhaler during a crisis at a birthday party that he even gives the friendship a chance. The show has this precious character in Esperanza and no one really wants to be her friend - not even Dion in the beginning. 

One of the most redeeming scenes was one with Esperanza and Dion happily sharing birthday cake in the back seat of her dad's van.  I also think they did a very poor job with the whole accessible vehicle when it came to how Esperanza was transported around.  There are scenes where an apartment neighbor whom Esperanza's father doesn't even know or is connected with is instructed to drive the family van to get her to the birthday party.  It was unrealistic that any parent would hand over an accessible vehicle to a stranger they didn't know to drive their disabled child anywhere.  Especially without any explanation as to why Esperanza's parents weren't the ones driving.   

The show had a perfect window of opportunity to show out of the gates that children with disabilities have just as strong of friendships as those without, and blew it.  Instead they made Esperanza a cast out of sorts, coming on strong wanting Dion desperately to be her BFF, despite his first rejections of that idea.

The show also took a turn I didn't really love.  Instead of focusing on this great story line with a child with a disability as a supporting character, they decided to focus on racial profiling, which had nothing at all to do with the story line.  It felt forced and out of place.  As if they threw it in there to support a climate of intolerance.  I didn't love it.  And then they took it step further to imply that if you have felt that you were wrong by a racial feelings, that revenge was perfectly acceptable as another character trips the offender in a school hallway as a payback of sorts.  For a Netflix series dealing with a story line involving very young children that all just missed the mark terribly for me.  It really was an out of place "problem" for the series and didn't at all fit whatsoever with the point of the theme.  The last thing we should be promoting is a revenge-like thought pattern to a childhood school injustice.

I kept eagerly awaiting for them to touch upon Sammi's diagnosis, or a better explanation of why she was in a wheelchair.  Sammi Haney has a Osteogenesis imperfecta (OI), also known as brittle bone disease.  Never once was her diagnosis ever discussed much less mentioned and Netflix had the perfect window to spread awareness about the condition and just fell completely flat. 

There is a moment when Dion uses his powers to assist Esperanza with floating and standing as if he wishes to see her walk.  Esperanza gets very hurt by this, and it causes some minor hurt feelings.  Dion reflects on his actions with the help of his mother's feedback and decides he owes her an apology where he explains he realizes she is not broken and doesn't need to be fixed.  And while true, those with disabilities don't need to be seen as broken, in some aspects the condition of OI does cause bones to break more easily. 

I'm really hoping there is a season 2 for Raising Dion because they underutilized the character of Esperanza, and they could have really done better showcasing a character with a disability.  Raising Dion was highly predictable and the use of the music theme used in another Netflix series Stranger Things, was a dead giveaway to the hidden villain.  I wouldn't have stuck with it, had it not been for desperately wanting Sammi Haney's character to be given more screen time.  She was just sprinkled about almost as an after thought or what felt like a move to have one foot in the door with the disability community.

Dear Netflix, you can do a million times better.  Now get that Sammi Haney a leading role or at the very least show us that you can step it up with a season 2.  Don't leave Esperanza behind so much in the background.  And fix the tone you left us with that those with disabilities are friendless, invisible and annoying.  They are anything but. 

While I had hoped it would be a great family series for my children to watch, I can't say that it meets the mark of the theme I wish my children to see.  I don't like the racial profiling theme nor the depiction of revenge.  I don't want my children to think that those with disabilities naturally are friendless or have to beg for a friendship, or to be seen as annoying or an outcast of sorts.  And the super-natural part with a person in a position of trust being the villain made me very uneasy.  You have a very small child essentially engaging via texts on an IPad messaging game with someone he thought he could trust who wants access to kill him.  Netflix in my opinion shouldn't be marketing this as kid friendly, it was much too dark with tones that simply didn't have as much of a positive message as they needed to have for children. 

Here's hoping Netflix steps it up next time.  This one misses the disability mark.

Love,



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