Payton thrives on structure. Our intention for our long weekend was to just stay home and relax, keep Payton on her routine and pray for a good, peaceful weekend. And-that's exactly what happened. Payton was a princess. No major tantrums or outbursts and life was pleasant. The hard part is knowing that life can't be like that. I love a good routine, too, but the fact is life throws curveballs. We can't make each day exactly the same, but boy would I like to. The difference in Payton when she is in her routine is amazing. She's a completely different child and I needed to see that side of her again after the past two weeks we'd had with her.
Koen ended up with a virus over the weekend (I had taken him to urgent care because he had been waking up about every hour thru the night for the past week and finally began to run a fever). Well, it seemed way to familiar and I just knew he had an ear infection. Sure enough, that's what the doctor at the ER told me and he gave us some antibiotics. After the three days of antibiotics I was suprised he was still running a high fever so I took him to the ENT. She was frustrated at the ER doc (shocked he would say Koen had an ear infection when in fact he did not) and said he has the virus that's going around....run a fever for 4-5 days and end up with the stomach flu. Sure enough, that's what it was. Needless to say, he didn't need an antibiotic and the tubes were still in his ears (yeah!).
Since I was taking Koen to the doctor yesterday we decided to go ahead and send Payton to Dawn's. I don't feel right even saying or thinking this, but I realize how difficult of a child Payton is when I just have Koen. Although Koen is three years younger than Payton, it sometimes seems that we can communicate better with him. Yesterday at lunch Bob was watching Koen and he said it was so strange because it's like Koen just 'gets it'. He doesn't need constant explaining - or sometimes any explaining, he just understands things. I try not to let myself think back too often of what it was like when Payton was his age. It still hurts too much, but the difference is undeniable.
After realizing how amazing Payton does when she's on her normal routine, you would think I would be smart enough to realize that I shouldn't go and pick her up a couple of hours early from Dawn's. However, I was thrilled to be off of work and have an extra day with the kids (even if part of it was spent running Koen to the doctor), so I ran out to pick Payton up so we could spend some time outside playing. As soon as I pulled in the driveway, I heard the words "Daddy home?" come out of Payotn's mouth and I knew I was in trouble. I tried explaining to her that Daddy was still at work..."Remember, Payton, mommy came and picked you up early so we could play outside", etc etc etc. Ofcourse, reasoning or explaining doesn't do any good with her. I tried to entertain her, bring her out of her 'funk'....the blank stare started up (that look saddens me beyond belief....I would love to know where she goes, where her mind takes her). Soon, we were at the yelling stage, and eventually the full blown tantrum. Oddly enough, someone that barely weighs 30lbs is able to get handfuls of my hair, break my sunglasses, and kick my head like a soccer ball. Like Nancy has said on her blog before, these are things she would never even have considered doing to her parents. Me either.....and the behavior I see in my child makes me feel like a failure as a mother. I can't really explain the feelings this gives Bob and I......we get down, discouraged, exhausted - we feel like we have tried EVERYTHING and nothing is working.
Once Bob got home, I told him I needed about thirty minutes to get myself together - reenergize myself, so I went back to sit in the bedroom. Quiet is not good for me. I think too much when it's quiet. I've never been angry at God for giving us a special needs child....and I've never really been one to think 'Why me?'.....I usually think 'Why not me?'....I mean, I would be scared to death to see Payton in any other home.....it requires so much patience and if someone didn't have the patience, she could easily get hurt. But, this hurts. My heart breaks. It's odd when you love someone so much and you know in your heart she loves you, but yet she turns on you so easily and you almost see the hatred in her eyes. She bites, she hits, she pulls hair out, she kicks - and yet she wants and needs me when she's scared, when she's anxious, and when she can't sleep. I love her so much it hurts and I just wish I could fix this.
I have Friday off with my kids. Do any of you ever feel nervous about being home? I remember feeling this way for the first year after having Payton. I don't know if nervous is really the way to describe it......maybe it's a mixture of scared, nervous, and anxious. There's really no way to describe it to anyone on the outside because I'm sure it sounds so ridiculous. Afraid to stay home with your children? No, not really. Afraid of what's going to set Payton off and how to protect Koen. We'll be walking on eggshells.....I think this is when we feel the most 'alone'.
I don't think I can find a better picture than this. This is Payton with her great-grandma Betty....taken on Mother's Day.
The past week or so has been pretty rough. I'm not sure if this is typical ws behavior or not, but Payton has a terrible time with goodbyes. And when I say tough time with goodbyes, I'm meaning drop to the floor, kick, scream, throw things, break things, bite, hit (you get the picture) for 30-45 minutes. This can be either when someone leaves our home or we leave someone else's home. It's making life extremely difficult and it really does exhaust her (and the rest of us in the immediate family). Part of me feels sorry for her in the fact that she seems completely unable to control her emotions - but the other half of me realizes that this behavior is completely unacceptable and we need to get her to the point where she no longer does this. But, when she gets mad - whew - the rage is on. My sister and I were laughing last night because my 2 yr old niece can even see it in Payton's eyes when she gets on the verge of getting angry....she runs from her. Now, I realize it's not funny at all...she really could actually hurt someone. I have several bite marks and bruises from her episode yesterday. It seems heartbreaking for her when she is left behind or has to leave. And, hearing her scream "Don't leave me!" is enough to bring me to tears. Even after giving Payton several notices that she's going to have to leave she still gets extremely upset. Our little angel can go from a sweet little princess to a raging monster at the drop of a hat. Yesterday Bob picked her up from Dawn's and was bringing her home. He drove past a gas station and Payton evidently thought she saw my or her gma's vehicle (she was so upset Bob couldn't even understand who's car she thought she saw). There's ofcourse no reasoning with her - and you can try til your blue in the face to tell her mommy is at home, it wasn't mommy's car, etc - she's already shaking the car with her anger and screaming at the top of her lungs. When they pulled in the garage I could already hear Payton screaming. Bob was trying to get ahold of her (she was too busy thrashing around, kicking screaming) and there sits my little man Koen in his seat just watching Dora and ignoring the entire situation (Thank you, God, for such an easy going little boy). Unfortunately, the week has brought us down and we are hoping and praying for a peaceful weekend. I keep telling myself this is going to get better - and please tell me it will. Will she get to the point of understanding what I'm telling her? Will she get to the point she is able to control her emotions - or be calmed down? It's not that we feel like our life has been taken away....but it would be wonderful to feel like we could actually go and do things, travel, get out of routine, be with people for a few hours and actually be able to say 'goodbye' and not have a huge tantrum come out of it.
I thought I would list some of my favorite things that Payton is saying:
"Gracias!" (can you tell she loves Dora?) "That make me sad" "That make me smile!" "That make me happy!" "I want flops" (meaning, she wants to wear our flip-flops) "It bright" (she's not a big fan of the sun :) "Mommy, thank you for picking me up today" "You're my Mommy!" "I want my grandma Robbie" "You're Aunt Linda" (I really can't tell you how many times in one day I'm Aunt Linda, and many times she is Goober, their dog). But - I love this because it shows her imagination! "I take a bath" "Don't leave me" "Hey Kobo!" (her nickname for Koen)
And - her huge sentence last night..... "Mommy, I had so much fun playing outside at my house today". (This blew me out of the water - I couldn't believe how perfect her sentence was).
Louie's mom posted this essay on her blog and I wanted to share it. On a day that I needed it (Payton had a rough weekend), this essay reminds me how much Payton has brought to our family. Although Bob and I often feel isolated and alone, Payton has created an atmosphere of teamwork, communication, and compassion that I'm not sure our family would have had if we hadn't had Payton. As I've said many times before, Payton has taught us more than we could ever teach her. Click here for the essay.
Anxiety is a tough thing - and it's hard watching your four year old have so much of it. It all started Tuesday evening when our town was under a tornado warning. All of our family came out and then some friends so we could all be in the basement. It was later in the evening, so everyone was only there about an hour or so....but in that amount of time you could tell she was nervous and ended up wetting her pants twice. We were able to get her to sleep around 11:30 that night but could still tell she was 'off'. Yesterday I got a call from the sitter because Payton wasn't feeling well and her eyes kept matting shut. Her eyes had done this for a few days but I kept chalking it up to allergies (along with her cough, runny nose, sore throat, etc). I ended up taking her to the doctor and realized she had pink eye and an upper respiratory infection....nothing a good ole antibiotic won't clear up quickly. I ofcourse don't like seeing her sick, but the hardest part for me is seeing the anxiety kick in. As soon as I told her we were going to the doctor she wet her pants....then about every five minutes on the way there she was saying "I go to doctor?". And because she was nervous, I think her senses must have been on high alert because driving next to semis, Koen babbling, everything set her off. And, ofcourse her routine was off. When I pulled into the driveway after the doctor's appointment she quickly realized her dad's car was not in the garage (she always looks for it after we get home from work and if he's not home yet she does NOT do well). So, because Bob was obviously still at work she lost it. I hate it when this happens because it doesn't just involve her and I anymore, Koen is involved. He now gets afraid of her (not only does she scream really loud but she gets pretty darn violent...embarassingly enough it doesn't take long for me to get afraid of her either). It made for a very long, exhausting day but we finally got her to sleep around midnight last night. I struggle right now because I feel bad for what it does to Koen. I realize as he gets older he'll do better with it - but right now it's tough seeing both Payton and Koen during her meltdowns.
I wanted to post these two videos - one of Koen walking (I still can't believe how fast he took off after getting his tubes put in) and the video of Payton opening her DS. This is the first time she has ever been excited about a gift (don't get me wrong - she loves to open presents, she just never really cared before what was in the gift.....this time you can see the shock of getting the gift - and she completely understood what it was). The video about makes me cry each time I watch it.
We have gotten so much rain lately, but it definitely hasn't kept Payton inside. The tornados were thankfully just south of us, so as soon as the storms passed, Payton and her cousins went out to play in the puddles and mud. We went out to my sister's farm to see their new goat and a new baby pig (Payton loves the animals out there!) and thankfully she brought her chore boots cause she definitely needed them. Here's some pics.... Can you tell by the way she's looking at Tanner how much she loves him? As far as she's concerned, he walks on water.
The kids are having a ball with this nice weather....it's been raining a lot, but we've still managed to make it outside (splashed in puddles, played in the rain). A funny thing happened this week. We had won a Nintendo DS and Payton loves any type of game like that (anything that she can push buttons - even though she has no clue how to play it). Anyways, we knew it would be coming in the mail and so we wrapped it up for Payton and she got to open it. She was sooooo excited and we told her we'd take her to walmart so we could get her a game (unfortunately they didn't have a Dora game, but she was thrilled about the Mario game she got). Anyways, you'll notice I typed the dreaded word 'Walmart'. We've had horrible experiences with Payton at walmart - but they have been getting better. Unfortunately the new DS and the adventure of getting the new game was way too much for her. We decided it was just too much excitement for her and she just lost it and went into meltdown mode. The strange thing about it was that even though I was in the very back of the store and Payton was screaming/kicking as loud as she could, I walked out - noticing everyone staring at me (some ofcourse are glares) and wasn't even embarassed! Parents have told me that I would get to the point that I would realize it didn't matter what other people thought - I know Payton can't help it and that's all that mattered. Well, it happened - I wasn't embarassed! I took Payton to the car, we waited on Bob and Koen to pay, and then left (Payton screaming the whole way home). It made for a rough night for her - but Bob and I both knew the blame was on way too much excitement.......what an amazing feeling to not be embarrassed and nervous by it all. I'm now accepting that many of these feelings she can't control and that as long as we know this, it doesn't matter what the people around us are thinking about her (and us as parents!)-we're trying to teach her this isn't acceptable and I know it will take time (albeit a LONG time) but eventually we'll see progress in her behavior. For now, it's progress with me.
Well, as expected, Koen did fantastic during his little procedure. He is the most laid back little man. We left the house around 5am (had to be at the hospital at 6am) and we got home around 10:30. That little guy did not cry once - and when the nurse came and got him to take him back for the surgery he just laid in her arms and looked at her.....he did the same with the nurse that brought him to us after he was finished. So - every nurse wanted to take him home because he never cried, he just laid and looked at everyone. (Such a different experience than with Payton!). The doctor came out and visited with us after it was over - she couldn't believe the amount of infection she was able to suck out of his ears. She said he would no longer be a 'drunk monkey', would start babbling, and would be one happy little guy. In my mind I was thinking 'shoot, he can't get any better - he's already a happy little guy'. Boy was I ever wrong! He is walking everywhere (in the past he maybe took about four steps) and would really like to run, he's started calling me 'mama', and he is smiling and laughing nonstop. He's never been a crier - he always just looked somber (kind of an 'I don't care' face). He's got a personality now - and he feels so much better (even though I really didn't know he felt all that bad!). So - I'm so happy we got those tubes put in! The only downfall to it is that he is now hearing Payton in the night (she screams so loud when she wakes up in the night) and it just breaks his heart. I think he's going to be a tender-hearted little guy (which I've been praying for - his sister will need that!).
Payton spent the night with my parents the night before because I knew if we woke her up at 5am she'd be up and ready to go for the rest of the day and I was hoping she'd sleep in a bit. By the time we got home she was biting her nails, tearing papers, etc. and as my mom and dad said, 'she's just a bit "off". It just messed her routine up a bit, but I'm hoping that by this evening she'll be back to herself.
Please keep Abi in your prayers. She has surgery tomorrow for her tethered spinal cord.
Tomorrow is the day we've been looking forward to. Koen is getting tubes in his ears.....woohoo! I was a little worried at the beginning of the week because of his cough, runny nose, ear infection (although I knew allergies was the cause-it just turned into a sinus infection/ear infection) but they put him on another antibiotic and it should definitely be a 'go' for tomorrow. Once he gets all of the fluid out of his ears we think he is just going to take off running ;) (He doesn't walk very well right now because the fluid makes him dizzy). It's so strange, I don't get nearly as concerned about putting him under anesthesia as I do Payton. I feel kind of guilty about that - I think it's because I know he's stronger, healthier, etc. And, maybe because I feel like it's such a blessing that this is all we've had to deal with with Koen. Whatever the reason, I know tomorrow we will have one happy little man having all that gunk out of his ears.
Louie's mom wrote a great article and has it posted on her website, I thought you all may want to check it out.....click here.