Reality Sucks, but It’s OK

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Today I again feel a striving need to be honest.  I’ve been dragging lately. Some of this has to do with being overwhelmed by work (that’s over), paperwork getting the kids in camp and keeping it going (that’s done too), vacation (long done), and hubby a bit frantic over a new job possibility (he was hired, starts Monday).  All the crazy stuff is behind me for a while, and I have some pleasant projects on the near horizon, including getting my blog class ready and marketing for September.

Part of it too was that I missed about 5 days of my thyroid medication, and it’s made me droopy while I get back on track, as well as I’ve been eating like crap (all while making sure the kids eat right). Round that off with no exercise, no supplements, and not enough sleep (camp means I need to get up around 6:30, yikes!), and that has left me wiped out. No one to blame but me and I’m working to remedy it.

However, there is something underlying my downness that I realized on vacation. As mentioned, some things did not sit right with Zoe, and vacation, which throw off most kids, did her a loop.  She loves camp, don’t get me wrong, but she is having a struggle lately…even though she’s getting better at fitting with it daily. So I’m not sure if we messed her up when we went BACK on caseins and glutens, if she got really disoriented by the changes, or if she having difficulty transitioning.

The fact is, I don’t buy any of that. When were in Disney, I became painfully aware that what is AWESOME! to a typical kid, or even to Amelia, is pure suffering and agony and just downright unpleasant for Zoe. And as much as I try to integrate her into things..and many things go well…there are just some things that autism and SPD stand in the way of enjoying.

I *also* know that it’s suddenly not PC to say autism sucks.  I apologize to every single person with autism I might offend, but the reality is that I cannot stand up and sing the praises of a disability that has made my daughter do things like bite her arms til bruises appear, makes my other daughter constantly sacrifice toys and food so that Zoe doesn’t “pitch a fit”, or have Zoe be utterly unable to wear a shirt in any vehicle she ever rides in. Don’t even get me started on what heat or a diaper rash or wet clothes or being sick or even just being NEAR the doctor’s office do to her.

So with all due respect, the lightbulb switched off this vacation: Zoe is far more disabled at this age (almost 6) than Amelia was at the same age.  And when that struck home, I had to SIT because the wind went out of me. We think of Down syndrome as this awful, unconquerable, genetic, “my child will never be cured” thing. But autism? We think Temple Grandin, we think “they can be smart, successful, married, have kids”, we think this or that treatment will solve this or that issue.   Maybe it will, we’re trying gluten-free, casein-free again, still cautiously, still haven’t moved on to supplements or other extreme solutions.

But I have to be realistic. What if it doesn’t? What if this is the best she can be? What if she can never make friends, or the potty is a goal too high for her, or communication will never be solid? What if your child is far more “delayed”, “disabled” or… “MR” than you hope for? What if she stays this way?

This has been on my heart since vacation and all I can say, folks, is I am in a world of hurt. I’ve revealed this to no one. I want to be optimistic, I try to be, but this idea runs like a deep chasm in my soul and it’s unfathomable.  And that was the post I was going to write today, when I had my pity party this morning and cried me a river.

THEN, I remembered this morning to listen to Joyce Meyer and yea, you can say this is platitudes, this is silly, you have faith in an imaginary being, or whatever.  This is my cross to bear, but I absolutely am ill-equipped to hoist it alone.  I don’t ever really understand *what* it means to give it to God, but I have to try.  It’s not my pain, it’s His. All I can do for Zoe is love her, try things, and pray for her – then let God do the rest, whatever that means…whether she leads a typical adult life or not.

The beauty of Christianity is that the ending is really Cinderella-happy, and as much as I’ve been a deep, DEEP doubter for MOST of my 45 years of life, I can wrap my arms around that and it gives me hope and the strength I need for another day.  I have what I need to move forward.

And today? I don’t want to be special needs mommy today. Today I want to be gina b.  I want to be the woman I feel like inside, and stop worrying every freakin’ moment of every freakin’ day about the food, the vitamins, the door being, did we do site words, does she have a rash, is it too hot/cold in here, is there too much TV on, is she playing Wii too much, has she eaten chocolate, why is she misbehaving, blah blah blah. I’ve HAD it with worry.

Maybe that’s what it means to give it to God.  He can take my worries, honestly, because I can’t take them any more. I’m sick of them. I can’t bog myself down with anymore overwhelm either, today, I want to live in the moment. I’m just going to go out, be me, and love my kids.  And focus on the positive, like the pretty good hair day I’m having.

namaste ~

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12 thoughts on “Reality Sucks, but It’s OK

  1. Michele

    I love this Gina. I’ve grappled with the whole “give it to God” thing over the years. Often, someone will say that to me when I’m neck deep in personal drama or ugly circumstances, and I just want to punch ‘em in the face (so NOT Christian, I know). Of course, once the fog has cleared and I look back, I realize what it means. For me, it’s about doing my part and trusting that God will handle the rest. For instance, I tend to worry everything to death (namely, the death of my sanity and peace). These days I’m conscious of when worry creeps in and say, “Not today. I did my part. God’s got the rest,” and I move on.

    So anyway, thank you for sharing so openly and living in the moment. What a joy it is! :)

    1. admin Post author

      Thank you, Michele, for sharing as well! I can be very much the cheerleader, at times, but when I’m honest, I feel so much less. I am, though, ever the optimist, so I guess that’s why Christianity is a good fit, lol. Worrying everything to death is a time-honored tradition in my family, but I do work to fight it. When I’m stable, that is :)

  2. Jessica

    Yes, been there. I’ve spent endless hours worrying about, if my children would ever change, if this is what my whole life is going to be like, what it’s like to be normal….what is normal anyway? Maybe we ARE the new norm!

    It will get better. I don’t know the details about why you went off the diet (maybe it’s in your blog), but once you get back on track with it, things will begin looking up again. I also think you should add an anti-bacterial for the biting. Bringing the bacteria levels down may address more than you even realize is related. Grayson had AWFUL levels of Clostridia, it was insane for a very long time around here!! I thought I would lose it, really lose it! But I used the biofilm protocol (without EDTA which is very important for kids like ours) and natural anti-microbials like GSE, OoO and OLE, plus I rotated a few things in and out for extra umph and bacteria is a thing of the past! He’s much more consistent now and the anger, defiance and negativity we had, is gone. Bad bacterias produce very toxic byproducts which is why she is being effected neurologically. It may also be causing her pain. You will get through this, you always do! One day at a time….Please feel free to call me, if you need any help or just want to vent, we can always do coffee again! (wink)
    Jessica´s last blog post ..More camel milk GAINS

    1. admin Post author

      Thanks, Jessica! That sounds good, but where do I get that stuff? “biofilm protocol (without EDTA)”…what products am I looking for? We have the GSE, but I don’t know the abbreviations. Keep in mind, too, Zoe is BIG on putting every gosh darn thing in her mouth, from chalk to curtains and crap she picks up off the floor, PLUS nail bites and drinks from others’ glasses. If some of this could be bacterial, fighting it would go a LONG way!

  3. ginger

    Hi love.

    You know I cannot comment on autism or the minute to minute struggle you find yourself in. I am clueless and won’t even try. What I can comment on is faith. Giving it up to God and what it means to me.

    I believe God has a plan for me. A plan, that no matter what I do.. no matter how hard I kick and claw at it, will not falter. God sees a bigger picture, has a grander scheme that we cannot concieve in the day to day of our reality. You can want something all you want.. beg and plead for it, but if it doesn’t fit into his plan, its simply not going to happen. And therefore its nothing but alot of pain and energy wasted on our end.

    So, with that belief I hold, Giving it up to God is simply reminding myself: Its God’s will, not mine. What ever I struggle with, I have to stop myself and say, Lord.. this is what I want and why I want it. I accept your will and know that if you choose not to give it to me, it’s because you have another plan for me. And I know that plan is good.

    True, many people will question my belief, call my faith, silly. All I can say is when I pray, I am at peace. When I give up the struggle and focus on the fact that it may or may not be in Gods plan for me, I am at peace.

    It is not up to us to figure out God’s plan. We are still human and will continue to fight for what we want. To get a job that will last. To be published. Or for a precious daughter to have a ‘normal’ life. You are proof of our inate instict to battle on through adversity. Even though the battle exhausts you. YOu are on a noble quest and though I know all you can see right now is the negatives, I KNOW your daughters are better off because of your efforts.

    So maybe you need to change your pov. Maybe what you see as a step back is just a turn in the road, leading you to another direction. On a path God has already carved out for you. And maybe, instead of trying to go back down the road that you just came from, you can look down the stretch knowing each step is God’s will.

    Peace to you dearest.

    xoxo ging

    1. admin Post author

      Ginger you have such a gift for writing things to explain them so well! Thank you, my friend. It is helpful to hear. And I agree with you, who cares what other people think about your faith? If it brings you peace, serenity, and helps you live to fight another day, it’s nobody’s business :) Yes, I am stepping back and reconsidering “normal”..what it means, and what it does, and whether or not it matters at all. thank you!

  4. Jana

    Gina,
    Thank you for such an honest glimpse into your life & your heart. You are not alone – so many times I have felt this way, and you worded it beautifully.

    I think God chose you to be the mother of your girls because He knew you would be the best mom for them. On one rough day here, my mother-in-law reminded me that God rewards those who suffer (Would I call it suffering? Most days, no. Some days, yes).

    “Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love Him.” James 1:12

    Will I receive a crown? I don’t know. But the words are encouraging. I echo what everyone else has said here: We continue on, working our hardest for the benefit of our children and then the rest is up to God.
    Jana´s last blog post ..Detox Review

    1. admin Post author

      Jana, thank you! I also admit that when I persevere with a good attitude, it’s EASIER and better. Hard to do in the moment, but God is slowly teaching me.

  5. Bethany

    I have been reading your blog for awhile; it is always good to read about other special needs parents and their experiences!

    You know, sometimes disabilities do suck. Our parenting experiences are different from those of our peers, and it’s not always for the better. I have a 4-year-old daughter who is not potty-trained, can’t ride a tricycle, and can’t talk. Those things do suck. I won’t lie.

    But, when I am in a better mood, I realize that she has a wonderful, charming, and funny personality. That, everywhere we go, people fuss over her. People who DON’T know that she has a disability. That she is–as she put it–”incredible cute.”

    We don’t know what the future holds for our children. But then, nobody does, whether their child has a disability or not. To be a parent is to do the best you can, and leave the rest.

    1. admin Post author

      Thank you Bethany! I do agree with you. I have a tough time, I think, because I’m not one of those “always wanted to be a parent, yay!” people. I ran as far as fast away from my childhood (while still living at home, that is), as I could. I’m not a person who likes play that much (scared by bad sports and cheaters as a kid), and I just don’t like the kiddie stuff, I have NO acumen for teaching skills or academics, and the only reason I have *any* patience is thanks to a strong faith in God. Put this all together with working from, in and at home for the last 4 years, and I tend to feel really trapped home alone with the kids. Ha! I didn’t mean to lay it on you so badly…doing double duty this week (work/childcare) and I’m tired and cranky from the crown of my head to tips of my toes, and it’s not even dinnertime.

      Parenting, right? lol…

  6. Audrey

    Thank you for this post. My son has SPD and it has been a rough ride. Today we went to his cousins birthday party and he was lonely and couldn’t engage with the other kids in play. And he is an only child because of just how much of toll his life has taken on ours. And so I’m feeling sad and angry – I want him to enjoy other children, I want him to have a sibling, and I just can’t make either of those happen right now, and perhaps never. I just don’t feel up to it today, and I’m tired of reading my favorite blog because the mom has 5 Neuro-typical kids and sometimes I just can’t handle seeing all that she can get done with them and be seemingly so very happy and balanced. I found your blog looking for someone who would understand. Thank you for saying it as you felt it. I’m turning mine over too, but it’s good to know I’m not alone. Thanks.

    1. admin Post author

      Oh Audrey, thank you for stopping by and sharing! Can I give you a hug? {{{{hug}}}} I know *exactly* what you mean about reading about typical kids. Actually this Thanksgiving was the first time I PLAYED with a NT kid and felt good about – a really smart, bright, precocious 2yo and I loved every minute. First time in 9 years I’ve said that. I do understand – you are SO not alone!! Let me know what I can do to make this blog a better place for YOU.

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