Tuesday, June 24, 2008

Deanna's Children Farmstead


Wow - I cannot tell you what a great time we had on Sunday. There was such a great turnout and everyone was just thrilled to be there together. I had been concerned about Abi because of her spinal fluid leaking but boy did she put my mind at ease. That little girl was running all over the place - no one would've guessed she was going to have surgery the next day. She has got the sweetest spirit, full of hugs and smiles. I didn't leave this time feeling overwhelmed and emotionally exhausted. Instead I felt excited. Excited to be around all of these amazing individuals - they are truly an inspiration. Jenny, who is 19 with william syndrome, does fantastic artwork. They are actually taking it to the convention and selling it (I'd love to have one of her tshirts!). She has an amazing personality (ofcourse!) and was excellent with all of the little ones.
Payton had a ball. Bob and I were concerned how she would do, but she did fantastic! I did not see an ounce of anxiety in that girl all day long. What an answer to prayer. There was an area where water covered over the pavement so the kids could cool their feet of a bit and just kind of splash around - the kids stayed there for quite some time. And, ofcourse, Payton chose to lay down on her tummy and sip the water off the ground (I immediately thought of Avery and what a great time she and Payton would've had drinking the water off of the ground together). Soon she spotted someone sitting on a bench not too far away eating a popscicle. I was talking to other parents so I missed her making her escape. Sure enough, I found her sitting next to this lady asking for a bit of her popscicle. The lady didn't seem too thrilled about it (I'm sure she was wondering where the child's parents were!), but I managed to get Payton down from the bench and away from the popscicle lady. I don't know why, but I think this is the most amazing part of the syndrome. No one is a stranger - everyone is seen as a friend. I'd really like to look thru Payton's eyes and see what she sees. She'll walk up and grab anyone's drink, thinking they're a friend and they won't mind :) She'll give hugs, grab hands, sit as CLOSE as possible, ask their name, etc. She loves everyone.
There were, ofcourse, some hard times. One young lady has an awful time with loud noises. She couldn't even sit in the picnic area with us because the children's voices just sent her thru the roof. Bob went over to their picnic table to talk with them and he said the daughter was saying "I don't want to have williams syndrome!". It broke Bob's heart - but he admired the parent's strength in dealing with it. Unfortunately I can only imagine that time coming for us. I know Payton will express to us that she doesn't want ws and we just hope and pray that we can encourage her.
My heart melts when I am with these families. It feels like home and everyone has so much advice and knowledge to share. And after this get together, I feel like I'm ready to go to a convention. We've held back on going because we definitely didn't feel like Payton was ready for such a big trip, but I truly believe that in two years she will be able to handle it great. But we've also held back because we didn't feel emotionally ready. It is a big step to go and take in all the information, see everyone, and learn the good and the bad. Actually, it can be frightening. But things feel like they are taking shape now, and we just don't feel as scared anymore. It feels like home now.

Thursday, June 19, 2008

Gathering

I have really been looking forward to the ws gathering in KC this weekend. My mother-in-law is able to come with us and I can't wait for her to meet everyone, especially little miss Abi. It will be the third one we've gone to and it's crazy because I still always get a little emotional after going to them. I'm really not sure why - it's probably a mixture of amazement at how similar these children are (they walk alike, talk alike, look alike, it's just amazing to me) and then sadness because you love them so much, all the while feeling the heartache because they struggle with so much. This time, more than anything, I'm just excited for Wanda to go with us - so far Bob and I have gone to these by ourselves and it will be great to share our 'ws family' with Wanda. Don't worry - I'll take tons of pictures ;)

Monday, June 16, 2008

Relaxing

We had a great weekend. Ofcourse we stayed home and just enjoyed the nice weather - and actually spent a lot of time in the pool. Last year Payton didn't care for the pool much. She really preferred to sit out in the lawn chair and watch everyone else...which was fine - it was something she enjoyed. Well, this year she is totally into sitting in a raft and just relaxing. She just kind of soaks and watches everyone. I loved seeing her out there just floating and relaxing! She still turns blue and about freezes to death, but she just shakes and shivers along. Koen, on the other hand, would rather be on the outside of the pool running around it, seeing what he can grab to throw into the pool :)

I've noticed this past weekend that Payton is expressing herself even better. She can say any word you ask her to - and say it clearly enough that anyone would know what she was saying, but she just doesn't express herself (her needs, feelings, etc.) very well. In the past if something hurt her ears she would usually just start screaming. At times, it can be hard to know she's crying because something hurt her ears because the noise may be something we can't even hear. This weekend someone sneezed and she said "somebody hurt my ears". Wow!! At that point, we could talk to her, help ease her mind, or get her out of the situation. Her other new expression is "do not do that to me". She has really made some improvements with her expressive speech - and we are loving every bit of it.

Here's some pics from the weekend:



Thursday, June 12, 2008

Obsessions

There was recently a topic on the ws listserve discussing our children's obessions. I think the most popular one was bugs. I loved the topic and got a kick out of seeing what other kids are obsessed with. The one I could relate to the most was the one where the mom said her son liked sticking things up his nose.....food, rolled up paper, etc. I died laughing as soon as I saw it because I can't tell you the things we've had to dig out of Payton's nose. She'll sit in the corner, tear some paper, roll it in a little ball and stick it up her nose. Even the sitter had to keep a close eye on her because when she was supposed to be laying down for a nap she'd sneak something in her bed with her and try to stick it up her nose. One day she evidently got away with it and on the way home she started her crying stretch (I've decided she has to do this to get everything out of her system from the day....although it does get a bit loud in the car :) Anyways, since she was crying her nose was ofcourse running. She'd evidently found part of a magazine and put it up her nose......as it was running out her nose I was trying to help her and not dry heave at the same time (I have a weak stomach when it comes to snot!). Ofcourse after I got her nose cleaned up I just laughed to myself because I couldn't imagine what was so great about sticking paper, corn, crumbs, etc up your nose.

Payton's other obsessions are spiders, snakes and the number eight. Last night as we were taking a walk there was a squashed baby snake in our road. I think she sat in the stroller and stared at it for 10 minutes. She was just amazed by it - a little dismayed that I wouldn't let her hold it or touch it - but she loved looking at it. In the night, she wakes up frequently saying spiders are on her and once I tell her I've gotten them, she'll usually go back to sleep - or continue saying "there's another one" until she goes back to sleep. It's funny because I think she likes them, yet hates them (kind of like how she hates the sound of a lawnmower, but yet has to see it). Bob was helping a friend of ours with his computer last night and once they were finished they came out and were watching the kids play. Payton was sitting up against the house looking at her legs and we asked her what she was doing. Her response..."there's spiders". We laughed and told Clayton that Payton is a bit obsessed with spiders, snakes and the number eight. He just laughed and then Bob asked Payton how many spiders there were. Payton started counting and said "One, two, three.....eight! Eight spiders!". Clayton couldn't believe it. And ofcourse, anytime we read a book she immediately has to turn to page eight. She gets so excited and throws her hands up in their air and says "look, it's eight!!!!".

I know the obsessions can get a bit old sometimes - but it's actually been a good way to teach her. Plus, it can also provide some good laughs!

Tuesday, June 10, 2008

Peace


Bob's parents came down this weekend and we were so thankful they were able to. Bob and his dad went to the drive-in and watched Indiana Jones while Wanda and I stayed home and played with the kids. Koen was running his 102 fever again, but seems to be feeling better. He must just have some bug going around - or it could be his teeth. Who knows, but he's content if someone is loving on him and holding him so I can't complain. He was having a rough night Friday night so he ended up sleeping with his grandma Wanda. I was thrilled he got to spend time with her - even if it was sleeping - because we just don't get to see them as often as we'd like.

Friday on our lunch hours, Bob and I went to the cemetary to decorate Kayden's grave. Time goes by so quickly, it doesn't seem like it's been four years since we lost him. It's amazing how things shape and mold you in life. I just hope this little guy knows how much he was already loved! :)


We finally got Payton to sleep about 1am this morning (melatonin obviously didn't do it's job last night!). Sleep has been few and far between lately, but I am assuming she's on her 2-week kick and will get back to sleeping her usual (which isn't saying much) soon. She was be-bopping around this morning like she'd slept for 24 hours straight, so it doesn't seem to be phasing her a bit. She never ceases to amaze me.

I just finished reading the new book that came out "Another Day, Another Challenge" a biography about a child with williams syndrome. I thoroughly enjoyed the first half of the book and could relate to so much of it. My favorite was the tearing and shredding of paper. Just this weekend we were getting ready to show our house and I had just vacuumed. Sure enough, as I was in the other room, Payton grabbed some notebooks out of her desk and just tore them to pieces. It seemed as though this child really didn't outgrow the need for tearing paper, so I guess I won't be shocked if Payton is still tearing at 13 years old. For some reason, it almost relaxes you when you realize your child isn't the only one with fears and obsessions (that they think about so much they even talk about it in their sleep!). I know it's all anxiety and I appreciated that the author thought it was one of the most debilitating aspects of the syndrome. I agree - and never realized what anxiety could do to an individual. I will say, however, that it wasn't the feel good story of the year. I was hoping maybe for a good, cushy feeling when I completed the book and instead found myself laying next to my daughter as she sleep, praying for her and our family. I know everyone's story is different and every outcome is different but more than anything I think I learned that I need to make sure and fight for Payton and make sure she's getting the care she needs. I do still plan on passing the book onto my mother-in-law for her to read (my mom purchased one for herself and plans on passing it around on my side of the family). I think any knowledge any of us can receive-whether it's on another individual's experience or medical expertise-will only help us understand and help Payton more.

Tuesday, June 3, 2008

Bob and I were able to have a night out this past weekend. Our anniversary was back at the beginning of May and we hadn't gone out to celebrate, so it was nice to be able to do that this past weekend. My parents kept the kids and I really appreciated the good night's sleep. My dad was up with Payton rocking from about 1am to 4am (thanks, Dad!) while my Mom tried to keep Koen settled in between Payton's cries. Trust me, that girl does not hurt for lungs! :) Although I hate that they were up with her so much in the night, it is reassuring to me that she doesn't just 'not sleep' for us. The fact is, that girl can run off of nothing!

Bob and I don't ever really get to talk that much so it was nice to actually visit for a change. Every parent knows how that feels! But it was nice to know that Bob is actually sharing some of the same concerns about Payton that I am. She has been having a lot of trouble with wetting her pants. This has been going on for quite some time now - months (at first I thought it was just a phase) but it's now to the point it's happening about 2-3 times a day. Because she was fully potty trained during the day (not at night yet), it is concerning to me. Match that with her ever-increasing toe walking and her more frequent falls (I'm sure the falls are just related to the visuo-spatial definicencies) it's just difficult to see. I'm realizing that thru this journey of williams syndrome we will more than likely question every little thing that happens with Payton....it is this, or is it this, what set her off, etc. Obviously, I don't question anything with Koen, I don't seem to have to. I imagine much of the different behavior we are seeing in her - even wetting her pants - is anxiety related (which we are hoping to get taken care of with the developmental pediatrician at the beginning of July). The hard part is parenting it. The behavior we see her doing is wrong-and we do discipline her for it; wetting her pants is something she knows better than doing and I don't feel like she is deliberately doing it. When it first began happening, we would discipline her for it, but now I'm not so sure she can help it. Yesterday at the sitter's she wet her pants.....she was just sitting in the chair and there she went. The sitter ofcourse got onto her, but part of me almost feels bad for getting onto her for it. I learned early-on to go with my gut and my gut is telling me she really is not doing this deliberately. She's not angry or upset when the accidents happen. Bob wonders if it's from the anxiety of things that happened earlier in the day even though she doesn't seem anxious at the time. I guess we'll get more answers in July and see what the developmental pediatrician says. I really hope the doc is a good one and listens to our concerns.

Through all of this, though, Payton makes every step worth it. She is such a blessing. I don't know too many people that will wake you up at 5am just to tell you they miss you. Then she politely asked "Lay by me please". Who could resist that?