Monday, May 11, 2009

One of those RTS days, I guess.

And yesterday, RTS stood for "Really Tough Sh!t".

It was Mother's Day. And I am admittedly grouchy and punchy lately. I probably have hurt some feelings and have a few apologies to make but at the moment the best I can do is to admit I am bitchy and move on from there.

The kids actually let me sleep in (James had to be at church early) so that was a VERY nice gift! I got up with them and we got ready for church and Caden was alredy somewhat agitated once we got to church because daddy had to go up front to sing during our service and wasn't sitting with us. He was asking for "daaaaaaaadddddy!!" and whining some, but then it came time for him to leave for Children's Worship and all was well. We made it through and then went to family's house for lunch together which was very nice. I think my neice may have broken her arm but I haven't heard from SIL so I am going to assume that she's ok for now.

After lunch we had decided to take a 1 hour + drive to see a campground that James and I will be camping at (without children!!) in a few weeks. We wanted to see what the campground was like and all of that. That went fine until James decided it was Caden's turn to hold the personal DVD player instead of Avery (who usually holds it in such a way that she and Caden can both see it and does a very nice job of it). Caden doesn't do such a nice job of it. He pushes the button to turn the screen off and on. He turns it away from Avery (which elicits an hugely unnecessary shrieking fit from her) and he just generally does what he can be to a pistol about it. Now, I understand that it might not seem "fair" that Caden never gets to hold it, but honestly, he cannot handle it. And I in turn cannot handle the subsequent hollering from Avery (again, not necessary but she's female and 4, what do you expect?) and general extreme referreeing I have to do. But I must say, with Avery I can reason with her and she understands the concept on consequence - and we made it very clear that if she kept hollering she would not be having any sort of snack or drink. Problem solved, for the next few minutes anyway.

Then we go to Target where I plan to return 3 items and come right back out. James suggests we all go in together. He knows shopping is my favorite gig ever and bumming around Target for clearance is quite high up there on my fun list and it's Mother's Day - a truly sweet suggestion James but I should have known better. We pile them all in the store and within a minute Caden has started his whining, grunting, "I'm irritated" noise - mostly due to the fact that we don't allow the pacifier to accompany him into buildings. And it's loud. And it receives stares (which truly DOES NOT bother me, but I want you be aware of what we're dealing with here). So we're trying to look for things here and there and during this time Caden wanders off twice - instant "into the cart" rule. And he isn't happy, so the whining crescendos. Long story short, we bought C batteries and toilet paper, James grabbed Caden and brought him to the van while I checked out with Avery and Declan (always the super troopers) and we headed home.

The ride home was pretty much silent. Caden fell asleep nearly immediately, Declan had napped a little bit and was content to chatter a bit to himself and Avery was singing, rather quietly which was nice. The silence was finally broken when I said to James, "Does it even feel to you like Caden ruins most of our family outings?" and James concurred. And that, my friends, is Really Tough Sh!t. It's the truth and the truth hurts. While I don't wish (anymore) for Caden not to have RTS (the syndrome), the truth is the wish is very much there for him to be more normal. I can't FATHOM what he would be like without RTS as it's the very essence of who he is, but I suppose I wish I could tailor RTS to suit our family's needs better. And can you even imagine, do you even KNOW how much it breaks a mother's heart to wish that your kid wasn't the way they are? To look at him, my heart adores him, but in the very same heartbeat, I want something different for him, for all of us. I want it to be FUN to go out and do things together as a family. I wish we didn't have to curb the things we do because Caden can't handle it, won't understand it, won't cooperate, doesn't understand consequence so there's no punishment that works...the list goes on.

And these are the moments where you feel very, very alone. James doesn't get it in the same way I do. He doesn't deal with him for as many hours as I do. And he isn't currently pregnant, either, which makes him a LOT more even-tempered, lol. Caden is ageless, in so many ways...I don't even think about what he would be doing as a typical 6.5 year old because I can't even imagine it. I tell people that I have a 6yo, 4yo and 16mon old and they say, "Oh, your 6 and 4yos will be a big help with the twins!" and I think, "No, no, no, he's honestly MORE work than the rest of them combined!!" but yet I just nod - what can you say?

I don't like asking for help with him. I feel like he's "my problem" - one I never asked for but apparently I needed. And he acts so dang good for others! At home it's where we have issues. I suppose that makes sense in terms of how we all behave differently at home and I am glad he's comfortable here obviously. It's just...different.

I'm throwing this all out there for heaven-knows-what reason. Some because I think I inadvertantly portray that everything's a-ok for us when it comes to Caden - and mostly, it is, but there are days, and then those days spiral downward so fast because it's all been building up. Some because these feelings are real and raw, and I think it needs to be ok to share them. And some because I just need a hug.

14 comments:

Alyssa Davis said...

BIG HUG FROM ME! It was good to see you and your entire family at Tulip Time!

Anxious AF said...

I wish I could give you a real hug. I dont think I will ever understand how I love Alex so much just the way he is, but long for him to be different all in the same heartbeat. I often wonder what he would be doing right now without RTS in his life. It stings, it hurts, it sucks.
I am so thankful for all you other RTS moms, Im not alone, your not alone. "RTS days" are hard, but good ones are coming, RTS and all:)

Kerri H said...

Hugs from here! I had one of those days recently! I do a lot of wonderings and what if's...it hurts all the way around sometimes!! Glad you had a great Mother's Day! Thanks for being there to relate to and not feel so alone!

Cindy said...

Here's a big, long hug, Tena. That's definitely an RTS day...and one that so many people can't understand. Thanks for sharing.

Mark and Valerie Brandt said...

Wow! You are such a "real" person and I am SO THANKFUL that you aren't always willing to put on your "fake happy" face and go about business. this makes me love you more as a friend. I love honesty, because it frees you from holding in what you are holding, and it gives me a better view of how your life really is...thank you so much for being blatent and honest and wonderfully you. BEAR HUG FROM NS TO PELLA...

Anonymous said...

Thinking of you.. Hugs from Florida..

Brouwer Family said...

Consider yourself hugged again.

Christine said...

Yes, RTS days do suck. I'm sending you a huge gigantic hug. It's hard and many do not understand the challenges that comes with RTS. Thanks for sharing your thoughts with us. We're here for you.
hugs and more hugs.

Tarah Peacock said...

Sending you a big hug!

Terri H-E said...

I'm with you, sister. Right next to you - good times, bad times.

Michelle said...

Pretty soon, I should be uploading a video of the noise Austin makes...it usually lasts nearly all day. I wish it were only when he was irritated! =) Two days ago, I got so frustrated with Austin and his syndrome. It was 10pm, he wouldn't go to bed (fell asleep at church) and he just laughed hysterically every time I got stern with him. Infuriating. The madder I got, the louder he laughed at me. Every day I wish Austin could talk. Just one word so I would have some hope but he says nothing. Tomorrow is Austin's 7th birthday and as you can tell it's hard on me this year.

Kelly said...

Hugs, Hugs, and more Hugs! Love your honesty! I can't help to think about where we would be without RTS. Kelly F

Ma Na said...

I don't know what made me read your blog today, but I am so glad I did. You have articulated a feeling I live with everyday (and bury most days). It makes me feel so guilty to be Carter's mother and give him all the love that comes so naturally for him, but know deep within me that I want to remove the complications of RTS from our family. It is very hard to express this feeling to others (especially those that don't live with special needs) so it goes unmentioned, but that leads to it eating me up inside and making me feel more guilty. I adore my son, and I know we will all be okay in the end ...but I just wish it wasn't always so hard. Big hugs!!!

Jacqui said...

OW What a hard experience! Those feelings of wishing for normalicy can cut so deep. I know my comment is a few days after you posted this, and i really pray that you have been blessed with some encouraging moments. Also joining the others in sending you hugs, and thanking you for your "realness"