Yesterday, four people stopped to ask if I was okay.  Four.  I wasn’t sick.  I wasn’t crying.  And I had even done up my hair and worn makeup — something I get increasingly bad about doing as the school year begins to wind down.   And though the question was nothing but kind concern, the expression on their faces was unsettling.  Cocking their head and silently taking me in, as if they were seeing something not immediately obvious.

I think I said I was just tired.

But one of them looked a little more and asked again.  And I could tell she was really seeing what I was trying hard to not reveal.  She herself has lived years of worry and grief for her own child – for different reasons, but the effect is much the same.  She didn’t put what she saw into words, but I knew what words they would be.

There is an expression that can be seen sometimes in the eyes of parents of special needs children, parents whose children are drug addicted, and parents whose children have died.  In short, any parent whose dreams for their children have been significantly altered or ended.  I think you can’t fully see it – every nuance – until you are able to recognize it in yourself.   It’s not even there most of the time.  But, some days you look and it’s there again.  And it isn’t a look of anguish – as some might expect.  No, it’s a look of…nothing.

Today I feel like a walking place holder.  My body goes to work, but not my enthusiasm.  I eat the food.  But I’m not really hungry.  I laugh at people’s jokes, but I’m not sure that they are funny.  I smile at my children’s antics, but I am somewhere else.  And, because I don’t know where that is, I can’t seem to call myself back.

It’s funny how differently people handle a crisis.  There are some who fall apart during the crisis.  They rage and hurt and grieve — and then accept it and move on.  I’m of the opinion those folks fare best.  There are those who disappear.  They can’t handle it and never do — never realizing that stopping and taking a good look at what’s following them is the cure for what haunts them.  And then there are the autopilots.  They announce the crisis, put together a crisis team, make a plan, and oversee its implementation.  These folks appear to be doing wonderfully — and lots of folks congratulate them for their strength.  I’m one of those.

The problem, of course, is when the immediate crisis is over.  The support team is no longer on red alert.  Others think they are fine.  And those seemingly limitless  reserves of adrenaline are now empty.

That’s how I feel right now.  Empty.  Numb.

It seemed like I was working toward some very specific things this school year — Callum starting daycare, increasing therapy, his turning three and getting a diagnosis, his entering public school, the IEP, etc.  And, suddenly, all of those things have passed.  I gotta tell you –it feels a little anticlimactic.

Perhaps it is simply the realization that there is no finish line.  It’s the long haul.  And my tank – at least today – is empty.  Heck, it’s so empty I don’t even have the energy to try to fill it back up.  I’m just plain tuckered out mentally.  Content to sit in my stranded state and look at all the people passing by.

But the thing about motherhood is that I don’t have the option of doing that for long.  Melancholy is so much easier to wallow in before you have two little souls depending on you.  And I’m realizing that there is only so much longer I can go before middle of the night insomnia is going to take me down.

So I’m giving myself two weeks.  If I haven’t shaken this off in two weeks, I’m going to see the doctor.  I think I’m also going to try to get away for a day or two by myself.  To sit in a hammock, read a book, and stop this incessant …thinking.

For I have allowed all my worries — the what-ifs, the what-will-bes, the attempts to explain, and the guilt of not being able to be everything that my son needs– to stir up a cacophony in my mind , in endless repeating cycles, that are now attacking because everything I was previously so focused upon has come to be.  And yet little has changed.

If I were a computer, I’d give myself a hard reboot.

I’ll be okay.  Because I have to be okay.  Because these sweet little babies I love require me to be so.  The trick, I guess, is to figure out how long you can sit back and decompress before you begin to atrophy.   Before melancholy is no longer just an unwelcome visitor continuing to knock on your door — but one whom you invite to come inside and sit down a spell…before never leaving.

And to remember that all of these feelings, thoughts, and worries are not to be given permission to steal my joy.  I am very aware that I am blessed and very grateful for this sweet little boy whose future I keep obsessing over.  He is not the cause of this melancholy.  That’s me.  My head.  My giving in to fear.

And there is nothing to do but work it out.  To stand up and begin going through the motions — until, like walking, mental muscle memory takes over and every little thing  isn’t a major effort.

This journey?  No, it’s definitely not for sissies.   But that’s okay.  I’m tougher than I look, and I’m stronger than I feel.

And I’m not opening that door.

“When you are sorrowful, look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.” 

-Kahil Gibran

52 responses »

  1. Janice says:

    It is something to know that others feel , dead and numb as I do. I wonder why I don’t cry anymore, I used to cry over silly things, now catastrophes just happen and I get on with it. This is the way life is just now. I have a 13 year old & a 2 year old with Autism, the 2 year old is not fitting all the checklists for it, but we just know. My marriage is also dead in the water. You are so strong , I admire you.

  2. I know that feeling. This hollow feeling like you’re going through the motions. What brings me back is usually a family member or friend suddenly needing me. Suddenly my cup fills up again, but it’s hard to fill it up for yourself. From reading your posts, I know you work so hard. You love so much. You give all you have. Sometimes, taking time for yourself, isn’t as rewarding for me personally. For me, silence seems to brew up anxiety and perseveration. For me, I take a deep breath and make a list of what I am most grateful for in my mind and for some reason doing something random for someone I love seems rewarding. BUT, taking time to breathe and taking alone time to decompress can definitely help calm down. Ironically, sometimes watching a movie I love that makes me cry shatters the numbness…I will cross my fingers/ say a prayer/ lend an ear if you want it. I know you don’t really know me and I’m not a parent. Just me, who happens to also be an Aspie, but what all this rambling really is meant to say is- you are not alone.

  3. Tina says:

    I hope these next few weeks give you some time to rest! You are a fantastic mom 🙂 I’m so glad with how honest and transparent you are. Thank you for this post! ((hugs))

  4. juliemgreen says:

    You need to give yourself space to grieve for what is and what never will be. You are doing the best you can, and that’s perfectly enough for you and your son 🙂

  5. judithornot says:

    You recognize where you are at — that is important and good. (((hugs)))

  6. “Perhaps it is simply the realization that there is no finish line.”

    wow. I cant tell you how hard that line hit me. Because it describes so perfectly part of what I am feeling at the moment. wow.

  7. Sue says:

    Hugs my friend! You are definitely strong! I know you will figure out a way to get past this and you are not alone in this journey. We are here to lift you up when you go through these times and if for some reason it feels like you are alone all you have to do is to reach out.

  8. Lori says:

    Hope you don’t mind, but this was so.very.relatable to me today, I shared on FB and have seen it all over several friends’ pages because so many of us are here. Or were here. Or know we will be here. Or, in my particular case, are here again. Totally know the look. Seeing it regularly. Hoping for that reboot soon for us all.

  9. lexilil says:

    Fantastic post, I feel like you’ve put into words what I’ve been feeling for a long time. Thank you x

  10. Shai says:

    This touches my heart and hits close to home. My son is almost 15 and has Autism, Bipolar, Developmental Delays and Fetal Alcohol Spectrum Disorder. He was adopted at birth. And now, at the end of January, my husband/my best friend died after a long illness.

    Dealing with a special needs child and the loss of my husband make me want to dig a really deep hole and climb in. However, I can’t as my son needs me. I, also, am a para to a great kid. So, I must push through and I often seem as if I am “ok”. Yet, a few friends have looked at me and known I was not.

    I, too, usually say that it is just that I am tired. Yes, I am tired and I rarely sleep and when I do it is not a deep sleep. I have seen my doctor and am on medication. It helps me but it is not magic.

    THANK YOU for putting our lives in writing.

  11. Karen Mangano Reynolds says:

    When the knock came, I barred the door successfully for several weeks. I felt I ‘had it under control’, no worries here. But then I realized I wasn’t living. Not really, just roboticly going through the motions. I wasn’t caring for myself. It was an insurmountably task just to make dinner or follow the usual bedtime routine with my son. People started looking at me with that same tilted head expression you so eloquently described. I snapped out of it long enough to make a phone call to a good friend who in turn made me (held out the phone until I dialed the number) call my Dr. Don’t wait two weeks…it’s not weakness that pushes us to ask for help but strength to feel better and the knowledge that we HAVE to be OK. Get some much needed rest, and call the Dr. when you get back.

  12. CW says:

    Take it easy and let yourself grieve. Please get help for depression.
    Don’t lose hope that things will get better.

  13. Christine Zimbrich says:

    I sometimes tell people that my life is like the arcade game, “Whack A Mole.” You hold a mallet and wait for the moles to pop up. When they pop up, you whack them so they go away. They come from different places, they come slowly and they come fast. Sometimes you are just standing there, holding the mallet, trying to anticipate where the next “mole” will come from. Sometimes, you don’t feel like you have the energy to hold up the mallet, yet alone whack when the mole pops up. At times the game can be fun, and sometimes satisfying at feeling you are accomplishing something. But some days I don’t want to play. Some days I am too tired. But the moles keep popping up.

  14. Kaye Chastain says:

    I am the grandmother of a six-year-old autistic boy whom I love and cherish with all my heart. Your blog was shared with me by a former student of mine with whom I now also share this heartbreaking affliction. As I read your words I was struck by the accuracy and depth of emotion contained therein. It isn’t just the parents of the special needs child, however, that wrestle with the uncertainty of what tomorrow may bring for him or her. For this grandmother,every day is fraught with unanswered questions about his future. And while I know that my influence and watchcare cannot last forever anyway, the knowledge that one day, sooner rather than later, I will not be here to help guide and protect him simply breaks my heart in two. Get help, dear one. Don’t wait to see a doctor. The burden you are trying to carry alone is too heavy for one set of shoulders. Without anti-depressants, my son and daughter-in-law could not face the challenges that confront them on a daily basis. Perhaps sad, but definitely true. God bless you as you forge ahead. I am reminded of Matthew 6:34: “Therefore, do not worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today.”

    • FlappinessIs says:

      Thanks, Kaye. My mother is not close to me, and, having lost my beloved grandmother and stepmother, I miss the comfort of a mom-type. That felt just like a hug from my Granny. Thanks more than you know. 🙂

  15. Kim says:

    I couldn’t have said it better myself..This is exactly how I feel..except I’m not as good as you are at putting it into words. I hope that you find some time to get away and to get some well deserved and needed rest from “life”.

  16. I have been in and out of that space that you are living in… my daughter has been diagnosed for 6 years now and I feel like I am constantly going thru the death process.. Does anyone else experience that? I also have a job as a para, husband, house and two other kids. I am so thankful for so much but it is exhasting and overwhelming on a daily basis. I know even typical families have these times but I feel like it is 100 times harder for us.

  17. I cried while I read this… I think it’s been five years of being on autopilot for me… Thankyou for helping me to see that I may need some extra help!

  18. Dani G says:

    Yes. Yes. And yes. xxxooo

  19. Aspergers Mum says:

    and once again you sum it up so wonderfully where I am at!
    Wishing you a chance to rest and recoup and what you need.

  20. Katylin says:

    I too am a mom with a special needs child. I attends an early intervention school two days a week with PT 3 days a week as part if my 2 year old son’s physical delay. A friend suggested your blog.
    I am thinking today you might need me as much as I need you.
    If you want to share- or have someone pump fuel into your tank while you sit inside and listen to the radio let me know.

  21. Wow, this is so familiar. Thank you for putting it into words.

  22. Charles says:

    Extreme tiredness is the physical and mental status of us parents who have a special needed child. No outsider could imagine the tremendous effort and attention we should pay to our children. You have already done a lot. Take care. It is a long journey.

  23. Jennifer K. says:

    I feel you on this. I have three children, and one has high functioning autism. He’s only 3 1/2 years old, but high maintenance since the moment he was born. I have suffered fom depression dealing with his behaviors, his therapy schedule, school drop off and pickup, his behavior in public, and even him eloping in to traffic hen he gets upset. It’s stressful, and as his mother the burden of his care and well-being falls on me 100%. I get you. I so badly don’t want to be depressed, and have good days and bad but none of this seems to get better with time.

    Hang in there, though. All we can do is keep on keeping’ on for our children and families.

  24. ProfMomEsq says:

    I feel like you just described my last year so succinctly. Don’t wait two weeks, Leigh. Go see your doctor now. The simple act of admitting to my doctor that I was having a hard time made all the difference for me. He helped me get some sleep, which – in and of itself – was HUGE in naturally refilling my tank. And he set me on a course that connected me with the help that was right for me. In the end, paying attention to myself meant I am much stronger for my daughter (and son, and husband). You have my empathy, sympathy and ear.

  25. Alicia Moore says:

    As always I appreciate your candor and humanity. I remember that phase so well. I reminded myself of my mother in the weeks following her mothers funeral. She was fine until there was nothing left to do then floundered. It’s ok to take this time. You can’t force acceptance or growth although you can work towards it. As you well know control is an illusion. There is only so much in our lives we can bend to our will and that includes our own emotional responses. It is what it is and it will get better and then worse again and better yet again. That is how this journey works. Recharge during the good times and take that time for yourself you mentioned. It is so important. You’re going to be fine. Just breath

  26. Desma says:

    i love your blog and I love the honesty of this post. I have felt so guilty for the days/weeks when i feel like this. It is comforting to know that I am not the only one. praying for God to give you strength and comfort 🙂

  27. Cyn says:

    Its so hard putting on “the face” to the world especially when you know that who you are around will not understand if you truly told them how you felt right at that moment. Thank you for sharing the depths of how you are feeling…honestly…because you NEED TO DO THIS. At least by having this blog you can express the feelings of emptiness and let others know that they are not alone. A year ago when we got our son’s diagnosis I felt the same way. Empty but then at times so full of extreme emotions I thought I’d would burst with tears or shout at the heavens “why us”. Keep on sharing….we are listening.

  28. The long haul–it goes on and on–but as long as you give yourself permission to feel what you feel and take the mental breaks you need to maintain your wellbeing–as long as you reach out for help and learn to feel no shame in having a support team for yourself–the long haul is do-able. Joy and grief will exist sometimes in the same exact moment–and you will learn to embrace that odd mix of heart-welling and heart-breaking.

  29. Ann says:

    Even though our journey is different I think you know exactly how I feel. What a good friend and listener you have been.

  30. April Carter says:

    You break my heart and you bring tears to my eyes:

    I know this woman you speak of. I know her well. I know that emptiness and that numbess that accompanies our superhuman feats of “strength.” I know her well enough that as I read this, I see myself, folks seeing the minutaie of exhaustion, the invisible, yet palpable aura of defeat despite never “giving in.”

    I know this woman.

    She worked full time and went to school full time and had a special needs infant and toddler for whom at that time, she had no explanations for his behaviors. Some people tried to “understand” and only made it worse. Their pandering attempts to
    show through example of their NT children that we all have the same terrible troubles. It would remind me of how different my family really was.

    There were those who would try to UNDERSTAND by asking questions and analying things the best that they knew how. They would offer solutions that would seem perfectly logical–if my child were neurotypical. Again, I would feel more isolated.

    There were those who would UNDERSTAND; they would see my weary soul through the blank stares in my eyes and they would hug me and say “Don’t ever be afraid to ask me for help. I may not know what to say or do because I don’t always understand, but if you tell me what you need, I’ll be right there.” And then they would listen. And it would help.

    Few people understand the grief and I have felt immense guilt over the grief, but the grief is real and it is human and it sneaks up sometimes when you least expect it.

    It’s funny you wrote this now; yesterday after dropping my son at my Mom’s so I can go to class, I decided to stop and get a snowball to give me a little incentive. I’m sure I looked a little out of place, one adult woman waiting in a line filled with excited children just getting home from school, but I felt like a snowball would be just the thing.

    The line was long; I had plenty to time to watch the other children.

    I decided to forego the snowball.

    I got in my car, got on the road so no one can see me, and allowed myself to shed a tear.

    I thought to myself “those parents have no idea how lucky they are that their children are asking ‘why’ and ‘how’ and wittily retorting to questions so abstract.”

    It took me three years to admit to myself that I’m human, that although I’m known for being a bootstraps individual, one who doesn’t whine, or wallow in helplessness, that I’m human. I quietly allowed myself to forgo sleep for three years, while working, going to school full time, and being a (which of course I didn’t know at the time) special needs parent, wife, etc.

    I had to learn to control the autopilot because I had to learn that it’s okay to cry. If not, I easily allowed myself to “coast the crisis” and I wasn’t facing the issue at hand. And then when it would hit me, it would really take me down. I’d go down for days because I wouldn’t sleep, wouldn’t stop, wouldn’t acknowledge my “human-ness.”

    This woman I know….I bet she’d appreciate one of my personal late night rantings:

    …and this woman…I hope she remembers that even, as Bobby wrote above, “stoic” people are humans. Hope you feel better soon!

  31. Stacey says:

    I am not a writer, but have a son with Aspergers and he is going blind. He has had teachers tell me he is clueless. When I read your letter to a teacher, I cried so hard. I wish I could put all my thoughts and feelings into words the way you do. I have shared many of your posts with friends and family as a way to better understand what we go through. I just wanted to thank you for your gift of writting and sharing it.

  32. This is why I love reading what you write.
    Talk about keeping it real!
    Some days and weeks and months can really suck the soul out of you, and that doesn’t mean you’re weak.
    If you’re stoic, then you don’t get the support you need.
    If you speak out, you may hear “all kids do that…” (Ain’t that right, Jillsmo??)

    I think that sometimes we parents come off like we’re whining when what we’re really trying to express is what you’re saying here — it’s hard, and we’re really ok, and we’re a little tired today. We will do anything we can — and things we thought we couldnt — to help our kiddos to have good and joyful lives. Today is a day to chill and maybe even do nothing (gasp!). We will live to fight another day and to do so with joy and gusto and gratitude and perspective.

    Chilling out and acknowledging that sometimes we are tired is not only necessary and healthy for us — it’s also good role-modeling for our kids. So, I vote for resting, chilling, and recharging. In a much shorter time than we’d imagined, we are ready for more, and we pick ourselves up by our bra straps and dive joyfully back into the fray.

  33. Sandi says:

    Do try to get time to yourself. Find a super-awesome, just-for-you creative outlet, too, if you can. Some place where you can find affirmation that is NOT about being a mom but about being YOU. I’ve found that to be very refreshing.

    You’re stronger than you feel. Like you said.

    We all hit a wall at some point in this life. It’s normal and right that you feel like you’ve hit yours. It’s okay. Keep moving forward, keep breathing. The mojo will return.

    And you’ll remember this and smile. 🙂

  34. hiking mama says:

    You have so elequently expressed what I have been feeling but unable to articulate. My 5 year old son was formally diagnosed on Tuesday, although we already knew. I have been “not fully present” in my day-to-day life for a little too long lately. Thank you for sharing.

  35. Leanne says:

    Your post touched on what are often my own feelings, but have not been able to put into words. We have 2 adopted sons both with special needs. I sometimes feel like I’m in a holding pattern in between crisises. I think sanity comes in changing my own expectations. When I stop expecting life to be calm and smoothe I can enjoy the small wins. But it sure is hard to let go of those old expectations.

    It seems like you have a pretty good plan for yourself. Give yourself a pat on the back not only for all you’ve accomplished but being in a place where you can take care of yourself too.

    Love your blog name, by the way!

  36. ylewis says:

    Very articulate, as always. It’s like your circuit breaker gets tripped and you (on the inside) just shut off. I usually find that getting away for a day, like you hope to do, is what I need to recharge and re-engage. The constant bombardment of needs to be met, things to do, plans to make, and victories to win definitely drains you and you need a time of refreshing and reflecting. Also, as a person of faith, reflection leads to worship and that is my deepest need of all. When I make the space and time to pour it all out to the Lord and let Him show me the needs of my heart and then turn to Him to meet them, He does. Every time. Praying for you to have a season of refreshing after a season of great striving. Thanks for being honest about the stuff we all can relate to.

  37. Rebecca Billings says:

    Wow. Just wow. You’ve turned my heart and head inside out with this one. Thank you.

  38. jess says:

    “The problem, of course, is when the immediate crisis is over. The support team is no longer on red alert. Others think they are fine. And those seemingly limitless reserves of adrenaline are now empty”. …..this is perfect, it sums it up as it is. My overused statement of how i am when people ask is “tired” but it so much more than that and this is how it is! Thankyou x

  39. Oh, I am there and then some, trying to dig out of the depression, and not wanting to change my meds, hoping the dead feeling will pass as I go through the motions. My kids need me. My dreams and hopes for this amazing little boy are going to have to be reconciled with the restrictions and limits his autism and delays have put on him. But there are new dreams to find, plenty of hope for joy and love. He will lead an extrordinary life, instead of the ordinary one I envisioned for him, and it will not be easy. It will be difficult, and marvelous, and he will still be my son, whom I love and admire because he is. Himself.

  40. I am proud of my friend for this one. Nail on the head my friends. When you ask if I’m okay, and I say, yep, I’m fine…well, you’ll see…Leigh, I love how you put exactly how I’ve felt for ten years into these few paragraphs. ❤

  41. Christy says:

    I LOVE you bunches and you nailed this one. Best one yet. I may print and frame it. Let me know when we get to enjoy the hammock….

  42. Oh yes, I’ve been here. I once had a lady in Shoprite notice my Autism puzzle earrings and ask me if I had a child with Autism. I replied “Yes,” and she asked me “How are you? Are YOU alright?” I confess it threw me because rarely does anyone ask the special needs parent how THEY are doing: there’s a lot of talk about schools, and behaviors and therapies (oh my!) but the parent has to take care of themselves also. There is no shame in recognizing our own needs as well as our child’s. I remember smiling at that lady in Shoprite and saying “I’m fine, thanks.” Then I went to the car and cried my eyes out.

    • Rena says:

      I’ve had days like that – my 9 yr old son is autistic and has ADHD and Developmental Co-ordination Disorder. On good days, you can’t tell that he’s the one that requires the aide in the classroom, but on BAD days… hoooo boy.
      I remember after one of those days after he was in bed and the phone rang. It was his teacher, and she was asking how the rest of his day went, and how I was doing. After sharing some of the day, and getting off the phone I sat on the couch and cried for about an hour. Not only did his teacher care enough to make sure he was ok, but she sincerely wanted to make sure I was ok.
      I still cry when I think about it.

      We’re not alone, and sometimes it’s really nice to be reminded of that – especially on one of those tough days.

  43. Catharine P says:

    I love how you can put into words the things I am going thru as a mom that I didn’t even realize. “There is no finish line,” and the paragraph about the expression on the parent’s face of nothing. It makes so much sense. I know it’s unfortunate, but I am grateful to know I am not the only one struggling with my child with autism. Thank you 😉

  44. Blogbiscuit says:

    I think this “nothingness” goes for those whom grieve as well, i have done what you described, ate but not hungry, drank but not thirsty laughed yet not really find things funny during grief, i have real friends that like you say can ask if you are ok and you say yes fine, or im tired or i’ll live, and then there is that person that understands you, understands what you are going through and they dig deeper for you to get it off your chest on how you are feeling or to describe the limbo you are in at that moment because they are the real friend that can truly empathise in your thoughts at that time.

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