Celebrate Good Times Come on. Come on!

I am a terrible person. I am. Today the thought crossed my mind that perhaps I should change my religion to Jehovah’s Witness so I never have to celebrate a birthday or Christmas again. Today is Josiah’s 4th birthday. It’s wrecking me pretty bad. I beat myself up more than anything. “Why can’t I just be stronger? Why do I still want to crawl in a hole and weep? Why can’t I just stuff this ache in a far away place and enjoy the day for what it is, and my son for who he is? There are better moms of special needs kids than I am. They can embrace the journey and go on. I can’t.”

Friends, I’m not on anti-depressants, but right now I wish I was I guess. I’m not a big drinker, but I would like to cozy up with a box of wine and just mask this, this loss. It’s not like I woke up with a lot of expectations or anything. In fact, that I woke up with any clarity at all is a miracle, given that I was up with Josiah between the hours of 1-4 am again. To be truthful, I’m probably just incredibly selfish and self-absorbed. Josiah had a fine old time today, and it is HIS day, after all. I just grieve because he doesn’t even know it’s his birthday. I’m messed up because I’ve always had high expectations for myself and everything I do, and I CANNOT make my boy right. I would endure anything if by doing so I could make him right.

And then I feel guilty for saying that. He’s my son, and he’s wonderful the way he is. But, you know what, I wish I could have woken up this morning and gotten the house ready for a bunch of the neighborhood kids to come over for a birthday party. Josiah would have been so excited because everything was decorated with Cars or Spongebob or Transformers, or whatever the boy obsession of the day is. He would have had a cool cartoon cake–not some lame GFCF chocolate cake with soupy dairy-free frosting and sprinkles I tried to make so he’d have something. Well, he wasn’t interested in eating the thing that cost about $20 to make anyway. He also had no idea what it meant to blow out candles so that was pretty anti-climactic. And as for the party, it was just me and my husband and his parents visiting from ND. Not another kid. Not a sleepover. Not a pinata.

Again, Josiah was a happy camper today, so what’s my problem? He was so excited to see the mini trampoline we got him, and he loved the toys he got that lit up and made all sorts of noise. But everything was magnified for me today. I just changed my 4-year-old’s diaper. His words today were… jump, swing, ice cream, push, come on, banana, muffin, get out. That’s about it. When, oh when is this stuff not going to affect me? It’s been two years. And it’s been exactly that long since I walked through the day with that wonderful feeling that all was pretty darn right in my world. I want to feel that again.

I guess my problem is that I’m scared. And tonight, I’m definitely coping not hoping, which is pretty ironic being that my whole blog is supposed to be about hope. I cannot comprehend how we ended up with our child having this disorder that NO ONE can tell us what really causes it, and we really don’t know what his particular “ceiling” would be. And, his success in life might be dependent on me to keep chasing that next thing that just “might work.” And, who knows–tomorrow they may come up with some breakthrough that cures all of these kids by blocking some gene receptor or something–probably in the form of a vaccine (again, ironic). And now 1 in 58 boys in America have this disorder, but not enough people care about that stat. And I don’t know if my son will go to the prom, or have a girlfriend, or work. And I don’t know if I’ll have any other kids, or grandkids for that matter, and life just isn’t how its “supposed” to be. And, is God going to come through here, or what? Pretty dumb how a person spins everything out of control, isn’t it? But I’m going to let myself go on the spin cycle right now, damn it.

Am I the only one that is thinking this stuff? I’m probably honest with my feelings to a fault. I’ve never been able to “stuff” them, and that probably makes some others feel uncomfortable. It’s not that I’m not an optimistic person. I just have to experience my feelings to get to the other side, I guess. However, I’m sure my husband would appreciate a little more of my “stuffing” with his dinner.

I often wonder if I grabbed Josiah and headed to the hills if the words “normal” or “typical” would even matter. Who would care if the kid didn’t think or act like the other kids do–there wouldn’t be any other kids. What are we all comparing our own lives to anyway? Who made the rules that said life had to be a certain way? I don’t know, but this isn’t how I pictured mine going. So, I feel guilty and ungrateful and selfish and discontent tonight. Because I do want my life to look… normal. And I want my son to eat a bunch of sugary, delicious normal birthday cake until he gets sick, okay?

Alright, I have embraced my humanness, and now I’ve got to bring it before the Lord because he told me not to worry about tomorrow; today has enough worries of its own. I hope I didn’t thoroughly depress you, reader, because I feel better now that I got all of that out.

Lamentations 3:19-30

I’ll never forget the trouble, the utter lostness,
   the taste of ashes, the poison I’ve swallowed.
I remember it all—oh, how well I remember—
   the feeling of hitting the bottom.
But there’s one other thing I remember,
   and remembering, I keep a grip on hope:

 22-24God’s loyal love couldn’t have run out,
   his merciful love couldn’t have dried up.
They’re created new every morning.
   How great your faithfulness!
I’m sticking with God (I say it over and over).
   He’s all I’ve got left.

 25-27God proves to be good to the man who passionately waits,
   to the woman who diligently seeks.
It’s a good thing to quietly hope,
   quietly hope for help from God.
It’s a good thing when you’re young
   to stick it out through the hard times.

 28-30When life is heavy and hard to take,
   go off by yourself. Enter the silence.
Bow in prayer. Don’t ask questions:
   Wait for hope to appear.
Don’t run from trouble. Take it full-face.
   The “worst” is never the worst.

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13 Responses

  1. Um, I’m pretty sure that you are allowed to feel down every once in awhile. It sounds like somehow you got the idea that you are not allowed to feel this way EVER, and my advice to you (not that you asked for it…) is to lighten up on yourself, let yourself feel it, and then move through it – which is pretty much what you said you’d do, right? Cut yourself some slack, Mom!

    And then, when I post sometime about feeling this way, will you come over and remind me I said this? 😉

  2. This post sounds to me like a Psalm. Please! Puke out the honest heart wrenching pain. Even if it wasn’t blatant, your heart of praise to our Savior still resonates at the end of your puke out.

    I often ponder this when I see certain families joyfully accept autism, why does it hurt me so bad, and why can’t I just accept it? Are they unloving to not work hard at discovering their children? Am I wrong for not accepting? I think for some, the Lord has given them the gift of peace, and others like me, he wants me to know him through the fight. Until the Lord gives me peace where my little kiddo is at, I’m going to keep fighting and not accepting. He will let me know when I can rest, and until then, I am trying to rest in His arm through the fight.

    Happy Birthday sweet little boy. I pray your 4th year will be filled with new discoveries.

  3. You are allowed to feel all of this. I think every parent of a child on the spectrum goes through this. The grief. There is no expiration date on that. I had (and sometimes still do, I’ll fully admit it) HORRID jealousy of everyone I know with “typical” children. Once we passed the “A” day and autism entered our consciousness it HURT so much to see how different he was and the pain of the difference was all consuming.

    You are allowed to feel this way. You are. Don’t beat yourself up for it. It is a part of what makes you human. You don’t love your son any less for wishing things were easier for him. You love him more.

  4. Tahni – Thank you for sharing your pure, raw and real emotions. First and foremost you have to remember that your human and you are an amazing mom. But Lord, there are some days when it is too much for anyone to handle. Even a strong person like you. I sometimes feel like those are days that God is really testing my strength, you know. I just want you to know that you are not alone in the way you that you feel 🙂 Josiah is so blessed to have you as his mother.

    Happy Birthday sweet little Josiah

  5. Thanks so much for the support, mommies. I’m feeling a lot better now. I find that when I’m tired and sleep deprived, I start breaking down a bit. I’m also learning that this sort of grieving doesn’t arrive at a resolution that allows “time to heal,” but has to go through a number of cycles and hopefully get stronger with each one.

  6. I have more days like this than I care to count. Sometimes they’re birthdays and holidays; other times they come out of nowhere and knock me down. Thank you for Lamentations 3; thank you for your beautiful sacrifice of praise in the midst of pain. Thank you for your faith in the waiting.

    Happy Belated Birthday, Josiah. Your wonderful face and happy eyes grace my refrigerator, and I love you so, even though I’ve never seen you in the flesh.

  7. Can definitely relate. I love my boys so much, and I do accept who they are, but, there are still “those days,” even after so many years. The boys recently turned 18 and 16…one day apart. Those are usually two very significant birthdays. But, Matt won’t be getting a driver’s license, and Kyle does not gain the typical rights of adulthood…we are actually in the process of gaining guradianship of him—almost sounds kind of silly that we have to get guardianship of our son! Their birthdays were on a weekend, and leading up to it, I really thought I would be okay. And I was, but there were a few tears—nothing big— at some point in the day that I hadn’t expected.
    🙂

  8. You’re not alone.

    With so much love, come acceptance and hope, and also worry and wishing and wondering. Life is just tougher with the challenges that autism brings and there’s always the unknowing of how things will look in the future. And the wish that our kids didn’t have such a steep climb. It’s hard!

    You’re doing a beautiful job.

    Keep the faith 🙂

  9. I am so blesseed that the Lord had amended my ways by the time you came along –to raise you in the nurture and admonition of the Lord…it blesses me to see you lay out your feelings before man and God and then run to God and get His take on what you are feeling……Our God Reigns……He is a God not only of hope but of promise….and that He WILL fulfill…love you, mom

  10. Thank you for your encouragement on this journey. You have been awarded. Come by my blog to pick it up. 🙂

  11. Don’t be so hard on yourself for feeling this way. You wouldn’t be human if you didn’t get angry and sad over the harm that has come to your child. Remember though, he is still young. He does have time to gain so many more skills. You do not walk alone in your journey. Your boy seems very happy and he is obviously very loved. Many typical kids grow up with depression and angst. Right now you focus on the fact that you are raising a happy human being. Keep fighting sister of mine. Never give up hope.

  12. I feel that way, too. I really don’t like holidays, and I used to live for them. I think it’s normal, especially after what we go through…

  13. […] and I was okay. In one year, I have come very far on this ride. Looking back at the post on his 4th birthday reminded me of that. Truly, to God be the glory. To sista-friends, I am grateful. For giving God […]

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