Times of Sadness to times of Laughter

We overslept yesterday and missed going to church. In the end, it more than likely worked out for the best. My mom was sick and if we don't go to my mom's after church we have an awful time.....Payton's routine is messed up and she has an "off" day. After getting up and around we went outside so Payton could ride her bike and I could take Koen for a ride in the wagon (Bob was busy cutting down trees and limbs from the recent ice storm). As we were walking down the driveway our neighbor pulled in just to say hi and see how our Christmas was. They noticed Payton's bike and asked if it was a Christmas present (it was, but she didn't respond). I told them yes and asked the boys what they had gotten for Christmas. Sam was so excited and said he had gotten a fire station. Payton looks at him and shouts "ME TOO!" and then starts talking about her birthday cake. We all just laughed and joined in with her excitement about her birthday cake. The neighbors soon left, but Payton had them in her head so she ended up riding her bike down to their house. I think she would've hung out in their driveway all day, so I asked if she'd like to ask the boys to ride bikes with her. She quickly responded yes so we walked to the door and rang the doorbell. The boys saw her through the window and yelled "its Payton!". They opened the door and Payton walked right in and started taking her coat and hat off. I reminded Payton to ask them if they wanted to ride bikes outside but she just kept walking off to wander and investigate the home. Koen and I visited with their mom for a bit and then she asked if Payton would like to stay for a bit. I asked Payton and she didn't respond...but I figured she would like to stay and play for a while. I was a bit nervous though, it was the first time I'd left her at someone's home that wasn't family. About 30 minutes later, Michelle brought Payton home and said Payton just didn't seem to know what to do with herself. Which, I was so thankful they went ahead and brought her home - but unfortunately my decision to allow Payton to stay and play wrecked havoc on the rest of our day.

I'm not sure the reasoning, and I'm sure Heather could enlighten me because she has had so much experience with Caleb and the anxiety, but Payton seems to get almost violent when she gets anxious. Payton ran thru the door right when she got home and I stayed at the door to talk with Michelle for a couple of minutes. By the time I got back in the living room Payton had already given Koen a huge welp on his face and ended up sitting on the bed for a while. It went from that, to throwing the cat in the trash, to throwing our trash can (yes she is small, but mighty!) and having trash scattered everywhere, to hitting Bob with a wrench he'd been using to work on something in the house, to biting and kicking. Yesterday evening after she'd gone to bed and it was quiet, I realized I knew in my gut it was time for Payton to get on anxiety medicine. It's not fair for her to not be able to cope with the changes (or be terrified of snakes, baby elephants, drills, windshield wipers, clocks, and koen's medicine, etc.) and not be able to live a good quality life. It's disruptive not just for her life but for Bob, my and Koen's life as well. We see the geneticist on January 9th and I'm hopeful we have a good experience with a medication. It's strange as a mom how all of a sudden your gut instincts kick in and you just know.
Ofcourse, Payton gives us such joy she makes everything worthwhile. My mom was keeping the kids today because Bob and I both had to work and her sitter had taken the day off. Mom wanted to call me and check on me (she knew our day yesterday was tough) and she knew if she told Payton she was calling me that Payton would want to talk. Anyways, Payton asked my mom "what you doing?" and my mom said "I'm calling somebody". So, as my mom and I were talking Payton ran over and tried grabbing the phone. My mom asked her if she wanted to say hi and Payton obviously said yes (not realizing who was on the other end of the phone). Payton grabbed the phone and said "Hi Somebody!". My heart melted and I just busted out laughing. I guess since my mom told her she was calling somebody Payton thought that "somebody" was their name. Wow-laughter is good for the soul!

Expectations

Bob and I were so excited this year to watch Payton open her gifts. In our minds, we were envisioning Payton ecstatic about the gifts we had so carefully chosen for her this Christmas. Her birthday was just a month before Christmas and we had decided on a train set with a train table. After all - she seems to love trains and we just knew this would be a toy she would play with. Suprising to us it did not turn out the way we had hoped and we've watched Koen explore the train set more than she has. It's difficult to watch children her age or younger come over and play with her toys and understand how to use them. I remember Dr. Mervis's words clearly "Payton's toys will be you and her father". I didn't really understand what she meant at the time. After all, Payton was just about to turn two years old and still wasn't walking....playing with toys wasn't anything I'd really even thought about. I was still trying to fully come to terms with her diagnosis and what it entailed. Now that Payton is four I understand what Dr. Mervis was trying to explain to me....most children with ws do not play with toys. They watch their parents play with their toys.

We decided to have our Christmas on Christmas Eve because Christmas day was full of activities starting early in the morning and we wanted Payton to be able to sleep in as long as possible so she could enjoy the day. Payton was thrilled to see all the presents and Bob and I couldn't wait to see her face as she opened them. As expected of any child her age, she flew thru the unwrapping - leaving boxes left to open to see the clothes inside and moving the toys out of her way to get to the next gift to unwrap (she ofcourse got to open her gifts and Koen's since Koen is too young to unwrap his own). After she would open each gift we would ask her "what is that?" or "what is this?" and each time her response was "that". My heart aches each time I hear her answer "that", but I know in due time she will be able to respond to "what" questions. Thankfully, it is a goal set up in her IEP. I looked around the room at her new clothes, a desk (she has become increasingly interested in using pencils and drawing), and her fisher price sing-along toy sitting untouched as she sat on the couch waiting to watch a home video of herself. I was sad and disappointed because I was thinking we had reached the age where she would be excited about her new toys and just wouldn't be able to wait to play with them (as I did when I was a child). I explained to Bob that I was a little disappointed because I'd been seeing something so different in my mind about how she would react to her toys and how I could imagine her sitting and playing with all of them - using her imagination and understanding how to pretend play. He seemed unscathed by it all and went about trying to put batteries in toys and getting all the wrapping paper picked up.

It was getting late so I went to give Koen a bath. Koen loves his bath and seeing the smile on his face and the joy he gets from splashing around in the water instantly relaxes me. As I put my hands down in the water to start washing him I noticed the bruises on my arms left behind from Payton's biting episodes from the chaotic week of Christmas get-togethers with friends and family. My mind was reeling from the hectic week and the way Payton can't seem to adapt to the schedule changes the holidays bring. Soon Bob was standing in the doorway and said "You're right". I couldn't understand what he was meaning and asked what he was talking about. He said "I got the walkie talkies out and she couldn't understand at all how to use them." (Payton loves yelling into Koen's baby monitor and hearing herself in the other room, so we thought she would enjoy walkie talkies). He continued on saying "No one will ever understand what this feels like unless they've gone through it themselves. I told myself I'm not buying her another toy just to have it laying around like every other toy we've bought her". And, he's right. Her joy is not in new toys. It is about being surrounded by her family and unwrapping and tearing every piece of paper in sight.

She seems to have so much joy being around other people she can't contain it. It's almost like the joy shoots out of her fingers and toes. I can't think of a greater gift than seeing so much joy in my child's eyes.

Merry Christmas!

Payton's been singing "Happy Birthday" to Jesus over and over and over. I think that just might be her favorite part this year. Hope everyone has a wonderful Christmas.

The hinge of history is on the door of Bethlehem's stable. Ralph W. Stockman

Payton followed Gianna and Ari's footsteps

After seeing how different Gianna and Ari looked with straight hair, I thought I would try straightening Payton's hair. She looked so different! (Bob said he didn't like it....it just wasn't his Payton). Anyways, after straightening it, I realized I was thankful Payton had curly hair. She has so many strange bald spots (you can't see them in the top picture, but you can see them in the bottom picture). When I wash her hair I always think it's thin, but when I straightened it I really noticed how thin it was. Yeah for the ws curls!!!


To end my post I thought I would show a pic of our kitten in the tree. He often climbs to the top and takes a little nap.....he has to get away from Payton somehow! Poor thing - I don't know what he'll do when we take the tree down.

She slept ALL night!

I am so proud of Payton - she slept all night last night! Sleep has always been a major issue for her....now that she's communicating and talking more I know it's related to anxiety (however when she was an infant/toddler it was related to her hypercalcemia). Anyways, she crashed around 10:30 last night and I didn't hear a peep from her until 7:00 this morning.
Koen had ear infections this past weekend and the antibiotic really kicked in yesterday and he is back to himself...and he slept all night last night too - so Bob and I both woke up feeling refreshed!! It's not unusual at all for Koen to sleep good - but wow it felt amazing to not have Payton up screaming in the night. Needless to say she got lots of praise from us this morning!

Out of Sorts

This week has been a wild one. We spent about three nights with my folks (thank God they had electricity!) and since I work at an electric cooperative I've been working a lot of extra hours. I am so proud of Payton. She has done really well with the change in routine and really enjoyed being out at my mom's for several evenings. We were so blessed to have a family member that still had power (90% of the county was without electricity).

We did add a new little member to our family. Our babysitter had several kittens and they found one that was perfect for Payton. It loves to be held and seems to be pretty good with the kids (I'm actually suprised it hasn't been squeezed to death yet!). We asked Payton what she would like to name the kitten and after many responses of "kitty" she finally said "Thomas!". (We figured the name would either be Thomas or choo choo train since those are her favorite things :) I must say I have already fallen in love with this cat.....he curls up by me when I go to sleep and just purrrrs and purrrs.

I will say I think I have pulled out of the latest slump and seem to be back to myself. It seems a lot of us bloggers have had some rough times lately. Seems like we're all ready to ring in the new year!!

Ice Storm

We had an amazing ice storm last Saturday evening and it knocked us out of electricity and water for a while. We are back to normal now - and we'll never take electricity for granted again!!! Yikers. I had to switch websites because I was having major problems with my other site.....so hopefully I can get this one going and not have any issues with it.