Everything’s fine, thanks

That has become my automatic response to the question “How are things?” or any variation of it. I believe this is true of a lot of special needs parents. Since Judy’s passing I also get this question a lot more.

The reason? There are several reasons but the main one is most people don’t really want the truth. You can see it in their eyes when they ask. How would someone respond if you told them the truth? Things are shit. Life has stepped on me and kicked me in the face repeatedly until hope seems distant. No-one really wants to hear that. They ask because that is what is expected of them. They don’t really want you to open up, even though they do actually care. Maybe it is just something most people are not equipped to handle. If I responded by telling you things are great, I am watching my child die slowly a day at a time and there is nothing I can do to stop it; how would you respond? Not to mention the haunting images of watching Judy fade before my eyes that still plague me.

My guess is no-one could respond to that. I doubt I could if I did not have personal experience.

Another good reason is that sometimes it is all we can do to get through the day without focusing on the underlying truth that consumes our lives. We try to busy ourselves with the mundane in the hopes that while we are not looking a medical miracle will appear; A cure will be found, or at least a treatment that will slow the progress of A-T. So we deflect the question with the simple phrase “everything’s fine” so as to avoid looking into the darkness within. That is usually what our nights are for. I have spent many a sleepless night laying awake in terror over what the future holds for Daniel and my family. I have stood and watched Daniel sleeping and been unable to hold back the tears when I think of just how hard his life will become, and how short. No child deserves this. It terrifies me to the center of my being.

Other times the question is truly sincere and the questioner is prepared to listen to it all. If we choose to deflect do not take it personally. Chances are we are having what we would term a good day and do not want lose that rare feeling, or maybe you are just not the person we are prepared to open up to that day. I personally have very few people that I feel comfortable exposing myself to on that deep a level. Such is just the way I am wired. I often find it easier to pour my thoughts into these words than to verbalize them. Here it just flows and I do not have to deal with the discomfort I see on ones’s face when hearing such things.

We also sometimes just don’t want to dump our problems onto others. Everyone has their own issues to deal with, why should they have to listen to mine as well. We don’t want to be the person shouting ‘woe is me’. I know many people say that you don’t have to carry the weight alone but that is bullshit. You always carry it alone. Every family member carries it alone, we just carry it alone, together. Talking to someone does not make it feel better nor lighter. It just gives you an outlet to voice your fears and hopes, it just depends on the day as to whether we need that outlet right then.

People also say that God does not give you more than you can handle. Those people I often want to punch fair in the face. If Daniel’s condition and Judy’s cancer were ‘given’ by God then my thoughts on God would be unprintable. Fortunately I do not subscribe to that train of thought. It is an ignorant comment made by well meaning people; those who are just looking for something comforting to say to make us feel better,  to make us feel like we are not alone.

I’m not sure what I intended when I began writing except to make everyone aware that ‘fine’ usually conceals the chaos that lies underneath the surface for a special needs parent. It is a shield we throw up before the world; sometimes it is something we even try to make ourselves believe in an effort to get through the day whilst we reach for hope; hope which may never come.

So always ask the question, you just never know the response you may get. It may be the day we need to talk, and you might be the one we choose to talk to. But regardless of our response, it will always let us know that you care, and more often than not, that is enough.

Comments

  1. Norelle

    I ask cos i care n know some of what ur going through n i would hope u know i do ask because i want to hear the truth if u want to tell me the truth XoxoxoX

  2. Peter

    I don’t need to ask, the story is painfully plain to see. It is not ‘God given’, and most certainly not a ‘Trial’ to overcome. It is, unfortunately, an increasingly common part of life. These horrors are appearing all to often, and it’s not just the good folks who have to face them. Cancer & A-T does not descriminate, if it did then those who inflict suffering and pain for it’s own sake would be the recipients and not those who are selfess, giving and make this world a better place {which is you and your family Scott}.

    I don’t think the euphamism ‘things will get easier’ is true. It is more the case of finding a way of dealing with the worst and taking joy during those rare moments when when you can forget the troubles and a positive event crosses your path. All I can say is that no matter what; I have been, and always shall be, your friend {I know that’s a plagarism, still true though}.

  3. Connie

    I ask because I care about the answer. I care about you and I care about your family.

    Always willing to hear the truth. Also willing to hear the, fine thanks, if that’s what you need for the day.

    You are surrounded by friends, they are there for you. But I know that in the dark of the night when the reality bites and it’s just you and the demons, that’s when you remember what true love is and think of your boys.
    Hugs

  4. Leah

    I always care for the true answers…….I know there is nothing I can do to make it feel better or make it all go away….nor do I pretend to……I ask because I love you guys…..I always appreciate the honesty behind you’re answers and I realise some days it’s just better not to ssk.
    Love you guys always xoxo

  5. Megan

    I like to ask.. I like you all to know I am thinking of you. I don’t care if I have my own things to deal with I am sincerely here to listen, whether it’s a good day or a bad day, and try and help any way I can..

  6. Tina Stubbs

    Scott,
    I admire your honesty. My phrase is nothing changes here. We don’t have that miracle cure yet. Your pain is clear to see and sometimes it’s difficult to know what to say. Just know you have family and friends here that really care about you and your precious family. It must be so difficult without Judy, Nobody can steal your memories. Continue to make special memories with your boys. Big hugs from another A-T Family. Xxxx

  7. julie

    We are all “fine” because “fine” is relative. Our fine is we woke up this morning, brushed our teeth and began a new day. We are in a different world than those around us. In our world fine is no fever or no hospital. Christmas is a good example. People say “Merry Christmas” it has different meanings to us. I always say no ER visit = a Merry Christmas…people look at me and laugh..but its true. This year our Christmas was spent dealing with the fact John couldn’t move off the couch. It still beat New Years and everyday since, we have been at the hospital.

    Humans are just human after all. Our brains are much alike and yet we are all very different. I highly recommend a talk with your doctor about this and a tiny dose of prozac. It can do wonders for the spirit…make you human again, when you are certain you can’t be. Give you the umph to get up in the morning when you are sure there is no point. Think of it as an aspirin for a headache this is for the heartache.

    Having dealt with cancer when John was 14 mos old, I have a different perspective. He didn’t deserve cancer, or A-T, but I didn’t deserve such an amazing kid. He survived that and I’ve never taken a day for granted since because of it. Others have sent their kids off to school, taking the day for granted, only to never hold them again. THAT is a tragedy. We have each other. our families and love, treasures that some others never receive. We just know the value.

    • Scott

      Julie. Thanks for reading and commenting. There is always a point to getting up. My boys are my reason; not to mention I would not shame Judy’s memory by letting life keep me down, nor do I feel the need for Prozac or anything like it. Heartache is something that can be endured.

  8. Pam Webb

    Hi Scotty, wasn’t sure whether to respond or not, but obviously i am now. I know & feel your pain everyday, that emptiness that can’t be filled or replaced. I was & am experiencing the same. Watching Jude decline, there are not enough words for here & you with Daniel. Yet i can’t imagine what you are going through without Jude in your life now as a wife & mum to the boys. I have deleted heaps of stuff i just wrote but my inner being is in turmoil too, yet my choice is to not show it on the outside as well – i just can’t, or wont let people know my true feelings & yes my response to ‘how’s it going/can i help?’ etc etc is “we’re all good / ok”. What else do you say. It’s definitely not good or ok. So know that i am here for you to talk to or listen whenever you are upto it. I love you & the boys so so much. xo

    • Scott

      I know that Mum. We lean on each other in so many ways words are mostly unnecessary. I love you too and could not manage without you.

  9. Mike Fowler

    Mate my thoughts on God are unprintable at the best of times. Please let me know next time you’re in Brisbane, I would love to catch up.
    Cheers

    Mike

    • Scott

      Will do Mike. It would be great to see you. Hoping to be up that way later in the year. Same goes for if you are down Newcastle way.

  10. Melissa

    Hello love,

    I thought about waiting to read this until I got home so that if it made me cry, which I suspected it would (and did), that I could do it in private. But that felt cowardly. So I read it and am standing at a bus stop at 5:30am trying to repair my make-up on the way to work.

    I hate that you are going through this. I hate that Judy is gone. My sweet cousin, my rock through 2014, the woman that loved me long-distance when my hope was gone, my spirit was broken. She never stopped being there for me, despite everything she was going through. She was a blessing in the lives of everyone that knew her. I hate that you, the boys, Auntie Pam and everyone else are without her.

    I hate that A-T exists. I pray that a treatment, and even better a cure, are found soon. I can’t imagine what it is like for you, for all of you. I pray for the ability to make it all be OK, to wave a magic wand, to fix it. I am grateful that you and Pam and the boys have each other, have a support system that loves you, when I feel frustrated and helpless about being so far away.

    If you find it easier to write than to articulate verbally, write me. I am always here for you; we are always here for you. We don’t and can’t know what you are feeling, what you are going through, but we are always here to listen. And we are always sending you all much love and prayers.

    I still can’t believe you make me do math, xoxo. Love you forever. Melis

  11. Deanna Achilles

    I am an A-T mom and I am so glad you are sharing with us. My heart goes out to you! I choose to trust God, even though I don’t understand Him. Without faith in His love, i couldn’t survive A-T or anything else. Hang in there, and keep writing! :)

Leave a Reply

Your email address will not be published. Required fields are marked *

five × 5 =