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.