Stuck Between Two Worlds

There are times in our lives where we find ourselves grieving.  An intense sorrow over a particular event is typically what comes to mind.  You know the ones, grieving over a departed loved one, a house fire…lost memories that cannot be recovered or maybe even a breakup that you weren’t expecting.  It’s fascinating to me that I have proven time and again that I can grieve; however, do I really know how?

I ask this question because I don’t think I have yet to grieve the loss of my son.  Now I assure you he is alive and well, but in a sense, part of him is gone.  I feel intense sorrow when I think about his regression and the adorable toddler he was at the time and where all that disappeared, but I don’t think that’s truly mourning our loss.  I know my husband has yet to walk through the 5 stages of grief, but men tend to deal with things differently.  For me, a person that has always been sensitive and could easily cry at the sappiest of commercials — this mom has yet to mourn that loss.

Grieving varies greatly culturally.  Some cultures mourn losses with vigor.  They really let it all out with wailing cries and everything.  I’ve been to a Sri Lankan wake where I was sure the cries would wake the dead from their sleep.  Knowing the person in the casket made me really wish it worked.  Other times, there would be utter silence and when someone was openly sobbing; the hushed whispers of how terrible they’re handling the loss would ensue.  In a society that puts pride in strength, crying doesn’t quite fit.  I want to be the strong one.  I do.  But I don’t think it’s working.  So at this point in the game, 8 years after the initial loss, how do I grieve?  What’s appropriate?

It then makes me wonder about my son’s progress.  Are we moving at a snail’s pace because I haven’t gotten over it and moved on?  Surely I’ve moved on, but I’m pretty good at throwing things into closets when guests decide to pay a visit.  “I’ll deal with that later.  The guests will be here soon, and I can’t look like I haven’t got it together.”  At times I think there’s really nothing to mourn over.  “My son is still here, he is beautiful and bright…just move on.”  Move on I did. However, my soul is heavy and my heart is sad at times.  So what do I do?  Start crying?  I can’t seem to make myself do it.  Meditate?  I can’t turn my brain off for a second.  It’s like the Indy 500 in there!  Yoga?  I really should start doing yoga but not sure that will help resolve the feeling of loss that I have.  I have tried the therapist route, and let me tell you…I’ve walked out of those offices feeling worse than feeling better far too many times.

My son has come a long way, but it is difficult to enjoy at times.  He works so hard, and it’s been a struggle to get to where he is. It makes me sad that it has to be that way.  We do celebrate the milestones but there’s that nagging sadness that wished things would be better for him.  The way things were when he didn’t struggle to do everyday things that people take for granted.

I feel stuck between two worlds. One in which I want to celebrate and enjoy the steps we’ve taken, but then there’s the one that overshadows this one at times and makes me feel like we’re all lost.  I want to grieve.  To cleanse and purge the loss away, but I just don’t know how.

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18 Responses to Stuck Between Two Worlds

  1. Pingback: March 9, 2012: Between 2 Worlds… | The Thinking Moms' Revolution Starts Here

  2. Julie Obradovic says:

    The grief will come. Just trust me on this one. It will come. It will find you. Don’t force it. Don’t try to feel what you can’t feel. And don’t resist it when it does.

    When I first found out my daughter had autism, I’m not joking that one of my first thoughts was, “I’ll cry about this later.” You don’t stand around crying when the house is on fire, you go get a bucket of water…or a hose…or bath water…or whatever it takes. You call 9-1-1 and bring in the troops and get to work. So that’s what I did.

    Eventually the fire was put out, years later. It was time to rebuild, so all of my effort went into that. Rebuilding the friendships I had neglected. Rebuilding the dedication to my career. Rebuilding my marriage. Rebuilding the life I thought I was meant to live. So then, that’s what I did. Still no tears.

    About two years ago, about 7 years since it all started, I knew something was wrong. I couldn’t explain it. There was a constant lump in my throat. 24/7 it was there. If anyone even remotely asked me how my daughter was doing, I had to change the subject. If anyone even remotely wanted to go down the road of the vaccine controversy, I was ready to rip their head off. I was losing weight without trying. I felt nervous and jittery all the time. I would weep at the site of a baby commercial. I had no idea what was happening.

    And then, the Age of Autism book came out. I devoured it, desperately needing to understand the centuries of history that lead me to where I was. When that picture became crystal clear, something I thought I had ached for, the totality of the nightmare rose up like a tsunami and crashed over me. Just like that, I was drowning in agony.

    I raced through the house finding all of the evidence to condemn me to mommy hell. This was MY fault, I felt overwhelmingly. I did this! I ate that damn tuna! I buckled her into her car seat and drove her to get her shots…over and over and over! I shoved that god damned pink antibiotic shit down her throat for months! I didn’t listen to my gut! I did this! I started going crazy.

    I tore the basement apart looking for the journal that I kept when I was dieting and breastfeeding, eating tuna almost every day. I wanted to really, really punish myself. I couldn’t find it, so I found all of the pictures of the before and after and lined them up on the floor. I took out the paint swatches I had kept for the nursery and sat sobbing picking up all of the evidence of a life and dream lost so stupidly. Baby clothes. Teddy bears. You name it. Anything to demonstrate what I believed I had done.

    I have never felt pain like that in my life. Never. And I’ll tell you what, I never want to again. There were moments I wanted to die. The guilt and loss were too much. It was just too much. I remember saying to my best friend, “I can’t feel like this anymore. I just can’t. I can’t live for another 50 or 60 years, if I’m lucky, and feel this.”

    When I started to think about that, I began to realize the truth. NO. YOU. CAN’T. You can’t live like this, or feel like this, Julie. You have a responsibility to your life. To your other children. To your husband. You have a responsibility to get through this. So I began to try.

    The only thing I have ever been able to do to cope with my profound feelings has been to write. It is my therapy and always have been. So I sat down and wrote a book. It was heart wrenching. Although fiction, much of it was my life. I sobbed the whole way through, feeling every moment, every part of the pain. (Ask the Rev…she read it for me.)

    And then just like that…one day not long after it was finished, I noticed something. The pain was gone. I could breathe. I could talk about it. I could debate without feeling like I was being attacked. I felt alive again. I felt strong.

    And then I felt nervous. Was I entitled to feel normal again? Was it okay to forgive myself?

    Yes. It was. And going through the pain, feeling it, being with it, and then letting it go was maybe the most important thing I have ever done. And someday, when the time is right, it will be the most important thing you ever do too. Just know, we’re all here for you when it happens. That goes for all of you.


  3. Happy says:

    Maybe writing this is helping you/us grieve in your/our own way.

    When my baby ‘died’ I grieved mostly alone. I’m bitter there was no funeral, no out pouring of support or community love. How could there be, they didn’t understand. It’s so nice you guys do.
    Maybe we can do that for each other…lend a little support, attend the “funeral” with you, at least be here with some understanding posts… grieve together.

  4. KFuller says:

    Autism stole the life my son was meant to have. If I ever let the grief happen, I would probably never be able to stop. What holds it at bay is the boy’s unending joy for just about everything; He has no idea what he is missing. There is an occasional wish to drive a car or train, but he seems not to have dreams of the future. He lives in the moment. He does not feel the searing pain that I do. He has no idea how far apart he is from his peers. The worst pain I feel is watching him want to play the piano. He is full of music, there is talent, but the damage from Autism blocks it. So sad. They will cover my grave with all of the missed milestones.

  5. INwarriormama says:

    I have never let myself grieve. I have cried, don’t get me wrong…cried many times, but never grieved. There is still a part of me that hopes the diagnosis was wrong or that I will wake up and this has been an alternate reality. I am afraid if I start to grieve I will never stop. It is hard to contemplate the loss. It’s not just my loss either, but the loss my husband must feel, and my son’s 5 siblings. I often wonder if we will ever know my son’s true nature. I hope for it every day.

  6. KO says:

    The in between feeling is just confusing for all involved, I think. I grieve for my nephew and the sparkle that used to be in him. But at the same time I don’t always feel like I can or should share that grief. I feel like I should hold that grief to the side so I can try to be strong and support my family. What I really want to do sometimes is sit down and have a good cry, vent, scream and shout until I lose my voice. And I want to be there for my family in whatever way they need, if I knew what that was.

    I wish there was a some kind of manual on how to cope with a loss but not lose the joy new milestones. I also wish that I could find a way to keep my family, those that are in the trenches of this fight day in and day out, from having to be caught in between these worlds. If I could I would take away all of that heartache, all of the loss and keep it to myself so that they could just celebrate the triumphs and those milestones that were supposed be unreachable. I just wish I could do more.

  7. Milk Maid says:

    Beautifully written. It is like you took the thoughts right out of my head. I too, have never really grieved about our loss. I always feel like I am a fine thread away from cracking. Even though my son has gotten so much better over the years, albeit at a snails pace at times, I have a very difficult time with his “off ” days. I feel like I have to be strong for him and for the rest of the family. Part of me feels like if I do give in and succumb to my emotions, I fear I may never be able to get back up. The result is that I go through periods of intense anger. Anger at myself, my extended family, my husband and the world. What I am really feeling is sadness but I am terrified of getting sucked into a black hole of despair. There are way too many of us in this situation. Way to many…

  8. Kiwismommy says:

    I never grieved either. I think because we kick into gear and decide to try to pull our kids back that the grieving is put on hold, though we never know when we are going to revisit the issue. But, for those very lucky ones of us that can get our children back, whether 100% or most of the way at least, I find the tears turn on and off constantly like a fountain. I couldn’t cry for the loss, I kicked myself in the ass and told myself, “you better get moving”. But the first time I took her skiing and watched her “snowplow/pizza” down the slopes, I had to turn away, walk into the woods and bawl my eyes out, “she wasn’t ever suppose to be able to do this”. When we had our first conversation about the cutest boys at school, I had to pull over to the side of the rode, then explain to her why her Mommy isn’t a total whacko who cries at the drop of a hat. The child who was never suppose to talk, was told she was severely mentally retarded, is now preparing to enter High School, she plays 6 different musical instruments, and has made the honor roll every quarter of her 8th grade year. These things turn this stone hard, warrior mom into a big puddle of crocodile tears. But that is the big difference…tears of grieving are of course sad tears, mine our now tears of happiness, and I recognize and acknowledge the huge difference. While on this celebratory journey we have buried 4 other family members in less than 10 years. So, it’s not like I got a free ride on some happiness wagon either. My Mom now has diabetes and a pace maker and I take care of her full time, along with my daughter, all as a single Mom. Oh and, I am starting my own company as I was laid off of my job last year. I tell people I don’t have a full plate, I have 6 plates and I am juggling all of them. I now help new families that just found out, and my biggest challenge is realizing some need comfort because they are grieving and I am a kick butt, get moving, you don’t have time to grieve now, kind of mentor that explains to them the limit of opportunity to pull our kids back into our world. Everyone grieves and moves on in their own way, I will try to support them in any way I can. Stay strong, there is hope.

  9. What could have been. No matter what the loss, it’s still a big deal to most. That lost kitten could have been such fun, the lost puppy such a companion. Lost love, yeah, that’s a big one too. My youngest was 17 when we lost her dad. We were beginning to start thinking of “our time”. He was ‘dad’ to my first 2 when we got married so we’d never been without kids. Then suddenly he was gone. 16 years ago and I’m still really pissed he checked out and left me to deal with life and old age alone. That said, I don’t know how any of you warrior moms and dads can experience the joys of the progress you’re making and still not grieve for “what could have been”! I only see my grandson a couple times a year (1000 miles away) and every time I look at that brilliant, funny, sweet boy, I appreciate how far he’s come, but then I grieve. Every time my daughter tells me something new he’s come up with I laugh – I knew it would come – then I grieve because it should have been this way all along. No matter how big the gains, you’ve lost something that will never be given back to you. The “what SHOULD have been”.

    • Sunshine says:

      So often the loss that the grandparents feel is overlooked. Thank you for sharing this. We know that we, the parents of these beautiful children, are YOUR babies. I can’t imagine how hard it must be to watch us go through what we do. Thank you also for supporting your daughter and her family. SO many autism families dream of support from grandparents. Thank you!

  10. Goddess says:

    i love this. thank you for sharing 🙂

  11. sandy donchez says:

    I too grieve at times,what has kept me together is that everyweek when we go to do his therapies (14 yrs worth. Now) I see how we have come.and thank god where we are Shawn has gone from not talking,screaming when he leaves me to talking so much I at times wish he just sit down and be quiet for a minute .from pulling him out from under chairs to him asking why he can’t go in alone.I see little ones that are where he use to be and reasure mom that the very large boy in the room was just like their little one and they too should have hope.Hang in there,you are not alone.

  12. WC says:

    I get this. I have a child who regressed and I have a grandma with alzheimers. She is here in body but her mind is not with us and I miss her so much and wish I could talk to her. It’s like that. Something was stolen from my child. The joyous childhood she should have had was taken and replaced with hardships and seizures and a wall of autism that separates her from us at times. I want to have a conversation with my child and know her heart and what she is thinking and feeling but it’s hard to know. My child is the one thing in the world that makes me the happiest and sometimes my biggest heartbreak (when she is sick with mito and seizures or seems compelled to do things like play in a toilet). I want her to have everything and while I celebrate all that she is, I grieve for the life she was robbed of.

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