I’m Okay: Autopilot Engaged

Disclaimer:  This is a thoroughly depressing, self-absorbed post, written in the ICU.  Read at your own risk.

I’m going to do what I said I didn’t really want to do and write a post about something other than autism. This is not to say that I don’t enjoy writing about other things.  I do and have.  It’s just that I’ve really tried to hold firm to that blogging guideline of defining your blog and sticking to it.  But something has happened that has removed autism from my mental train completely.  And it’s all bottled up inside my head with nowhere to escape but here.

Twelve days ago, I received an anxious call from my father’s secretary.  Apparently, the guy who mows his lawn saw an ambulance carry him away.  Having a terrifying clue what had happened (he had a stroke 10 years ago), I got my husband to drive me to the hospital and found my dad in the emergency department with stroke symptoms.  In short time, a CT scan revealed a very large hemorrhagic stroke.  A LifeFlight chopper was called, and we took off for Shands – where he had been accepted to their NeuroIntensive Care Unit.  I didn’t go further than a hotel a couple of miles up the road for 8 days.  A week into the stroke — though doing amazingly well neurologically — he developed some breathing complications related to just being in the ICU and has been completely sedated and on a ventilator for several days now.  All predictions from his neurosurgical team are that this is sort of par for the course for ICU.  And they have repeatedly stressed how great of shape he is really in – no apparent neurological or cognitive damage.  Most people in his should would be dead or in a coma.  He is very, very lucky.

But it hasn’t been an easy ride.  Each day there is some new test, new tube, or new worry.  First and foremost – pressure on the brain. Then there is a period of danger called a vasospasm window, the time period patients are at risk for what are kind of aftershock strokes.  Blood pressure crisis one day, oxygenation the next.  Fever.  Among several other concerns.  If I hear two steps forward one step back one more time I’ll scream.  But it is all too true and patience is the only option available.

I’ve seen some awful things he has had to endure over the past few days.  I’ve ridden in elevators with entirely too many sick children. I’ve met some very nice folks in the ICU waiting room, shared our stories and family member’s conditions, and seen their heartbreak as they made their final goodbyes.  I’ve been so very sad for them — and so very relieved I wasn’t in their shoes.  Daddy’s condition is, of course, quite serious, but he has apparently escaped permanent damage.  It looks like we will get to take our loved one home.  All of him.

I’ve watched people handle it all so differently as well.  The angry types — who demand entry everywhere and are furious when doctors cannot answer the unanswerable.  The dramatic types – who seem to thrive just a bit too much on an unfolding crisis.  The manager types – who talk loudly, take detailed notes while demanding the correct the correct spelling of every name, and attempt to conduct the emergency to their own satisfaction.  The wailers – whom you really should limit visiting the sick person, lest he think he’s dying.  The jokers – who are so uncomfortable with grief they use inappropriate humor in an attempt to deflect it.  And the doers – who immediately begin making contact lists, researching, making plans, signing paperwork, etc., with the express purpose of delaying the inevitable emotional crash sure to follow by just keeping busy.

That’s me.  I’m a doer.  An emotional autopilot.  I know I’m not the only one, as I’ve met others like me.  I’ve been acting as the family spokesperson – complete with a medical update email, investigating hotels, discussing rehab options.  But I’m starting to get the idea that I have a particularly bad case of keeping busy.  Over the past few days, I’ve noticed several people looking at me strangely.  I’m getting the idea that they are wondering what is wrong with me, why I’m not crying, when I’m going to fall apart.  I confess that I am wondering myself.

Because, I really could use a good cry.  The problem is that it is all bottled up in uncertainty.  I keep telling everyone who expresses concern that I will fall apart when it is called for or it’s over and that neither of those apply right now.  From experience, I know the difference.

Five years ago, pancreatic cancer – a cruel and often hopeless disease – robbed me of my stepmother.  A cheerful and devoted mother, grandmother, teacher, and friend, who dearly loved my daddy, was taken from us in just 5 months.  It was without hope from the beginning, and I began silently grieving from the start.  The last days of her life were pure hell – watching such a bright and beloved light fade from our world, leaving us all in devastation of her loss.  I had never known it possible to cry as hard as I did.  To this day, there are sights, sounds, and moments that take me right back to those dark hours.  I’ve never been the same.  There isn’t a single day that I don’t miss her presence and insight – especially now that I have children and a special needs child in particular.  I just know she would have been an amazing support for me and a wonderful grandmother to him.

But this is different.  We’ve got all kinds of hope here.  But all kinds of suffering.  Worries.  Progress and setbacks.  Fear of the unknown.  Steadfast determination to remain positive.  Nagging doubts.  Relief.  Anxiety.  It isn’t grief.  But it’s still a total and overwhelming assault upon one’s emotions.   And deepest of all those emotions is the helplessness of watching someone I love suffer.  It’s like the whole world is in limbo.  (Oh, wait.  Maybe this sounds like dealing with an autism diagnosis for your child after all…)

I feel just like a lost little kid in a big crowd, hoping my daddy will come find me and take me home.

Only I’m a mother now.  I have small children who need my stability – even when I’m not feeling it myself.  My little girl is very aware of how much I’ve been gone and keeps drawing pictures “for you Mama”.  And Callum seems out of sorts as well – a little grumpy and way more snuggly.  (Of course, I have been going home as much as I can and switching off with my step-sister and a couple of others. I swear I’m not abandoning my children.)  My dad, were he not sedated at the moment, would fuss at me to go away and just pick him up from the hospital if he makes it.  But you just can’t do that with the kind of dad who has rightly earned the name Daddy, now can you?  He is, after all, Autism Grandparent of the Year. :)

So, yes, I’m okay.  At least on the Official Press Release Statement.  In a few weeks, when we get him out of the rehab hospital and back to being himself, I’ll reconsider a nervous breakdown.  Oh, wait.  I have to work for a living, be a wife, be a mother.  Nix the breakdown.  I’ll just have to settle for a visit with my doctor and the possible publication of some whiny blog posts.  Darn those celebrities.  Don’t you envy them their psychiatric options?

A quote about fathers and daughters I love:

“…I’ve made it my business to observe fathers and daughters. And I’ve seen some incredible, beautiful things. Like the little girl who’s not very cute – her teeth are funny, and her hair doesn’t grow right, and she’s got on thick glasses – but her father holds her hand and walks with her like she’s a tiny angel that no one can touch. He gives her the best gift a woman can get in this world: protection. And the little girl learns to trust the man in her life. And all the things that the world expects from women – to be beautiful, to soothe the troubled spirit, heal the sick, care for the dying, send the greeting card, bake the cake – all of those things become the way we pay the father back for protecting us…” 
― Adriana TrigianiBig Stone Gap

Update:  The day following this posting, my father suffered a second, more devastating stroke.  He passed away peacefully.

27 thoughts on “I’m Okay: Autopilot Engaged

  1. Lisa

    I am a doer, as well. 2 years ago my mom was hospitalized. 5 days later she had a stroke. 2 weeks after that, the doctors confirmed Pancreatic Cancer. I have been in your shoes. I know the trauma. I know you will never be the same. Please consider talking with a professional..doing so enabled me to get through a very dark period of my life. Auto Pilot is helpful, but being able to vent out the emotions is helpful.

    Sending prayers and nothing but positive thoughts your way…hope your dad gets out soon! ((Hugs))

  2. Ann Burt

    Hoping your “Daddy” (I really really wish I’d had one of those!) the speediest of recoveries and a complete return to his life with you and yours. Take help when it’s offered, I’ll be thinking of you.

  3. Karen (Kari) Frakie

    Thinking of you and hoping you and your Dad will be ok. With hugs, Kari

  4. gpigwhisperer

    I think you’ve actually captured what many parents of children with special needs feel all the time. And we don’t get to have break downs and the world doesn’t stop for our personal crisis. Think of it like the “first diagnosis shock” wearing off and now you’re moving to acceptance. Still isn’t a happy place, but you know you’ve got some time to figure out what’s going on and how to manage.

  5. Frume Sarah

    Doer here as well. After my grandmother, z”l, died after a rapid one month battle with a brain tumour, my grief was overwhelming. Short-term helped tremendously. And though I think of her nearly every day, it is in a healthy, life-affirming way.

    So keep it together for now…and then, when the crisis has passed, allow yourself permission to feel every emotion you’ve shoved down deep inside you.

    In the meantime, prayers to you and your family.

  6. Kaye Chastain

    Sweetheart, of all the things you said so beautifully in this blog, three sentences struck me the most: “Over the past few days, I’ve noticed several people looking at me strangely. I’m getting the idea that they are wondering what is wrong with me, why I’m not crying, when I’m going to fall apart. I confess that I am wondering myself.” Would you please believe me when I tell you that (a) it doesn’t make one bit of difference what other people think, and (b) there is no “right” or “wrong” way to behave in situations such as this. Leigh, life doesn’t come with a “one-size-fits-all” blueprint. Some days it is all we can do to breathe, to put one foot in front of the other, to go through the motions of living. For most of us those days are not the status quo, but they do come and sometimes they stay a while. You have a lot on your plate, dear one, but unlike when you were a child, it isn’t necessary for you to eat everything at one sitting! Do what you can, only for today. Yesterday is gone and can’t be changed. No one knows what tomorrow will bring. Know that you are surrounded by many who care about you, who are praying for you, who are keeping you close in thought. And I am in that number. Be strong when you can, but recognize that you can’t always be. No one can and no one expects you to be. (((HUGS))) your way!

  7. Leah Kelley

    My dad has been hopsitalized and very sick over the last couple of months. He finally finished rehab and was home and walking again, after pretty much clawing his way back from what my mom, sister, and I were pretty certain was the end. He is a man with some extremely complicated medical and auto-immune challenges – but it is combined with a so far unending desire to keep his place in this world.

    Then he ended up back in the hospital again this past weekend. I get that it is hard to talk about – I have barely touched on it in my blog. He is undergoing some more tests and we are all hoping that he is going to weather this latest crisis with his fragile health.

    Anyway… I just wanted to say that there is a certain efficiency and hold-it-together- strength that we learn by being parents to our amazing little ones. It may not make the challenges easier – but we do know how to be doers… and that ‘doing’ sometimes keeps us so occupied that we can keep on going. It gives us direction – and that is not a bad thing.

    I sometimes wonder if there will be a certain place – or time – or state – where all will be relaxing and I will feel the stress drain away. I am coming to understand that this is likely not the case.

    I am learning to find the peace in the little moments of joy… and too, in making sure that I don’t hold it all in – just because that fits my image of myself as being oh-so-strong. I don’t want all of those feelings to fold back in upon themselves and leave me with their forever weight.

    We have to know how to let them drain away… to cry when we need to…. and to reach out to others

    And to tell our story…
    Thank you for sharing Leigh…
    (and by the way I do think this is entirely related to being an autism parent)

    I think this post might address some of what I am trying to explain: http://30daysofautism.wordpress.com/2011/05/13/let-the-tears-come-dealing-with-grief-and-letting-go/

  8. Patti Van Burkleo

    Hugs and prayers. Been there at the hospital for months and months and months with a dying fatheradore lay needing a new heart. It is exhausting, painful and mind- fogging. Hang in there. This, too, shall pass, for the most part. And I am glad he will come out the other side as you knew him. :)

  9. Patti Van Burkleo

    Oops, darn auto-correct! ….father in dire need of a new heart. Sorry…..

  10. loubyjo

    what a lovely post my auntie had a stroke lastyear but has now more or less fine although a bit more forgetful I also lost my uncle from pancreatic cancer last year so sad !!! espeially when told no hope but with you dad think you have hope wgich is the most important thing xxxx

  11. Pam O'Connor

    Thank you for this very touching post. Autopilot is necessary sometimes to get us through the awful, the terrible points of life. But through your writings, you’ve proven to me that you are a loving and resiliant woman. Tears will come in time, as well as anger and grief at your Dad’s condition. But the love the two of you share can NEVER be taken away, and is for all time. My father is my hero, and always will be. Your Dad sounds remarkable. Sending you love and serenity.

  12. Lizbeth

    I am thinking of you. You are in my thoughts and prayers. Please do make some time for yourself, just take a teeny-tiny bit. Please? And a good cry is OK. If you find yourself getting to that point, find me on FB or where-ever…a good cry is always better with a friend. Hugs.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Thanks Lizbeth. Not sure how I plan to accomplish it today, but I’m going to do something to that effect. I certainly did get in my fair share of crying yesterday and last night. Despite autopilot mode, I knew it was okay to fall apart then and did.

  13. Linda Bale

    Like you I am a doer and have been there several times….. (((Hugs)))) I will be thinking of you and yourfamily during this time. Let us know how things are going. And get some rest for the next step Rehab can be just as exhausting for the family as for the person in therapy…. But then you already knew that! 😉

  14. Ann Burt

    Oh, I’m so very sorry. What a painful loss for you and your family. My deepest condolences. Bless his heart, and bless yours too.

  15. Patti Van Burkleo

    Oh, no. I am so sorry for all of you. I know it is really difficult to lose a parent and how child-like it makes one feel. I hope you can take time to properly grieve amidst it all. Take care of yourself and put your oxygen mask on first.

  16. Suzanne

    Oh, no. What to say without slipping into cliché? One of the first posts I read on this blog was Autism Grandparent of the Year, which I felt was a beautiful testimonial of love for your father. Please accept my condolences for your terrible loss. Wishing you and your family strength and serenity.

  17. Jenny Saul-Avila

    My husband & his mom are doers – they kept very busy during the last awful days & few days after my father-in-law passed. I’m a try not to cry, but that’s just hopeless & once I start, I’m done for and will cry & cry until I puke & am useless for that.
    I’d like to be a doer if there every comes a need for that.
    But be a doer for yourself & get some rest, or some space to put your head down if you need to.

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