Mother-In-Law

Can we say God-send? Bob's mom came and spent a few days with us. It worked out perfect....the first night she was there Payton had a touch of the stomach flu, so Wanda was able to keep her and Koen the next day while I went to work (it wasn't a good time for me to be gone from work so I was very thankful she was here). The kids also had an ENT appointment, so Bob had some help while he took the kids. Payton's ears looked fantastic (she kept telling the doctor she was her FAVorite doctor...ofcourse Payton loves having people look/play with her ears so she really does like the ENT). Koen is on his 12th ear infection, so he thankfully gets tubes in May (wish it was sooner - but I know he's not the only kiddo needing tubes). Meanwhile, my little man is growing like a weed. Really starting to walk more and he got his first tooth!!! It's not in all the way, but we can atleast see a tooth :)

Anyways, Wanda spoiled my kids rotten, cooked dinner, did laundry, picked up my house, and even baked a pie. I felt like I was on vacation! We are really going to miss her. Payton is crazy about her Grandma Wanda...as I was leaving for work this morning I saw Payton fast asleep and her gma Wanda was laying right next to her. I know Payton was in heaven (and gma probably was too). Wanda said when Payton woke up she looked at her and said "I woke up! Let's play!" I'm so glad she was able to come and visit - especially with Koen....we don't get to make the trip to West Plains very often (Payton just has a hard time adjusting to the routine, long trip...but I'm hoping that changes after our appointment in July) and I feel like I've cut out important grandparent time for Koen. I know, I know - we parents always feel guilty, but I feel like the grandparent relationship is so important. I learned so much from my grandparents and spent so much time with them (even though they lived out of town) that I dream the same thing for my children.

Anyways, here's some pics of the kids outside.

I hope everyone had a fantastic Easter. Payton managed to make it thru possibly 5 minutes of the Easter service (they dimmed the lights and it got her a bit nervous, then someone started playing a flute and that was the end of that!). Bob took her home and Koen and I stayed - which I really enjoyed. It'd been a while since I'd been able to attend for the entire service.

This Easter I found myself really missing my grandparents. They've been gone for about seven years now and I know if they walked thru the door today it'd be like they were never gone.....we'd pick up right where we left off. I think so much of it is how I wish they were here to see my children. My grandma loved kids and I could just picture her having a ball with all the kids around. And-I picture her just going crazy over Payton.....loving her, supporting her. And-I know she would cry right with me when I'd had a tough day dealing with the different emotions we go thru raising a child with a disability. Wow, I miss them. But, I know I will see them again some day.



This past weekend the listserve was quite busy with how to actually describe WS. Some were upset because a gentleman stated it meant something was "wrong" with his child. I'm sure I've even said that before because if there wasn't anything 'wrong' with Payton why are we going to the doctor so much? Why are we having so many therapies, etc? I realize it just hurt some feelings but I wanted to post what a father said about his daughter. His words are so true. There are so many times when I blog that I'm hoping parents do not think I love Payton any less because of her having WS. It's just not the case at all - I just wish for more for her. Here is what he typed - he explained it so well.....much better than I ever could, so I thought I would post it.

We're not talking about our children's disposition, or character, or spirit, or love of life, or gentleness, or empathy, or humanity. There should also be no debate here that in these areas they are far greater humans than the rest of us who do not have Williams.
But...
Would I give anything to stop Erin from having surgeries and lifelong medical problems, to not know an endless parade of doctors on a first name basis, to not have her be on Concerta every day of her life without her behavior being out of control, to not subject her to endless testing and retesting that is so difficult for her, to not spend tens of thousands of dollars on attorneys and countless months/years fighting school systems to get basic education, to not need to have national conventions to learn how to deal with the system in order to allow her to live a somewhat normal life, to not have to worry and plan for the fact she may never live independently, to remove the probability that she may never get married have a family or children, to not have to worry about (and plan for) who will take care of her when we're gone and the burden we may have to place on our other children, to not watch her struggle with so much in her life that is not a struggle for anyone else, to have her able to run and catch a ball, to not watch as she despairs and withdraws because no one wants to play with her or be her friend.
Would I give anything for that? You're damn right I would - in a heartbeat.
If you're reading this thinking this means we would love Erin more if she didn't have WS then you're completely missing the point. We couldn't love Erin any more than we do - she is one of the three joys in our lives (the other two being her brothers).
But this isn't about us, or you, or the world. It's about our children and their lives. It's about Erin and Erin's life. And would Erin's life be better without WS - It absolutely would. And I would challenge anyone who would suggest otherwise as being selfish and not having Erin's best interests at heart.

I'm so thankful we live in a time where all of us can communicate together - vent about the bad times and CELEBRATE in the good times! It's nice when others can put things into words that you feel, but can't explain.

Thankful....

I'm thankful for:
*My family. This past weekend Bob was out of town. My mom came and spent the night with us so I could get a good night's sleep and she could get up with Payton. Payton was up for a couple of hours in the night and my mom took care of her so I could sleep. It means so much to me - and it's amazing what a good night's sleep can do for one's body. I feel rejuvenated. Thanks, mom.
*Time. As Amy said on her blog it's becoming more and more apparent the biggest job of our lives is not getting our children to make it in this world as adults, it's actually to help our children reach the age of adulthood. I was watching Payton play outside this weekend and suddenly in her face I saw all the features of williams syndrome. The features don't stick out to me like they used to, but for some reason this weekend they did. It's been three years since Payton's diagnosis and still I immediately catch myself praying "Oh God, I'm scared. I don't know if I can do this." We've done it for four years - but yet I still catch myself saying and thinking 'I can't do this'. There is so much to keep track of - medically and developmentally. And because of this - I'm thankful for every second I have with her.
*Patience. I'm so thankful for my husband's patience. He is so good with Payton (and Koen) - and tries to be so patient with her. It's nice to have his help and understanding in all of this.
*Door alarm. Payton escaped outside again this weekend. I hadn't heard Payton in a while and realized she could possibly be outside. I went running out there and sure enough she was in the backyard sitting in a pile of leaves just spacing off. My parents had bought us a door alarm for Christmas because we'd had this problem with Payton before (she just goes out in the freezing cold with no socks or shoes on and just runs around). Needless to say, Bob put it up as soon as he got home this weekend.

The "R" Word

Yesterday I was caught off guard when a co-worker of mine was discussing her youngest son going to preschool. Her son is a few months younger than Payton and she was telling me how she couldn't stand it because her son can only write part of his name - not all of it. She laughed and said "My first child went to preschool doing things every other preschooler is doing and my youngest is going to look like a retard". It's kinda funny, because she knows Payton has WS....and I can't help but think I would stop and think before saying that to someone whose child actually has a syndrome - and is delayed. (Actually - I wanted to tell her I would be thrilled if Payton could even draw an "a"!). She continued with her story and finished off with "I don't want my son to be a short bus driver...." and after that I trailed off thinking in my own mind how sad society is sometimes being so hard on individuals who can't do things as well as others. You know, I know I won't ever be 'thankful' that my daughter has ws - but I can say I'm thankful she's taught me so much about life. We don't take a single thing for granted anymore - and that's a gift she's given to us.
I told my mom this morning that instead of things getting easier it seems like it's getting tougher. I'm sure anxiety medicine will help us tremendously (by the way I rec'd all the paperwork for the developmental pediatrician yesterday in the mail and it made me even more excited to see him....I truly think he will help Payton and make sure we've also covered all the medical bases). On an almost daily basis now Payton seems to cry for about an hour or so after I pick her up and cries atleast an hour before she actually settles down in bed (then seems to obsess about things she is afraid of - the clock, moon, sheep, etc. for about and hour and a half). Life is exhausting right now and it's hard for me not to get hateful with her geneticist. Although we've decided Payton will not be seeing the geneticist again I would atleast like to send her a video of how my daughter is so out of control - completely unable to control her emotions. It's so sad to watch her go thru it - I just want her to be able to go outside, play, and be a kid. For now, Bob and I's hearts are heavy and ready to see our little girl relaxed and happy.

A new week

Last week I had to work late a couple of nights and Bob ended up having to work late one evening as well, so needless to say Payton did not have a good week. I think the hardest part of WS for me (so far) is the inability for her to adjust to a routine change. The evening Bob was working late my sister happened to come over and Payton was a mess. Screaming, crying, unable to control herself. Sara made the comment that it's one thing to hear about her having these meltdowns but it's a totally different feeling when you actually see Payton having the meltdowns (over something as simple as her father having to work late). Alas, it's a brand new week and I'm hopeful it will go much smoother for her. She's been up since 3:30am-so hopefully she will crash hard tonight. I really cannot fathom how she survives on such a lack of sleep. Melatonin helps her drift to sleep but even last night she was awake after just one hour of sleep. And, I feel guilty towards Koen because after being up off and on all night (okay, most of the night) with her it's hard to feel rested/rejuvenated to spend quality time with him. I'm so anxious for her to see the developmental pediatrician in KC. Surely he can give us some ideas for her sleep, anxiety, etc. For now, I'm counting down the days until her appointment.

Riding the horses

Payton and Laney love riding horses. They were out at my parent's house for Koen's birthday and it was so nice outside Uncle Danny got the horse saddled up and let them ride. They had a ball - and thought they were pretty big stuff.

Yesterday I took Koen for his one year checkup. He's doing just great - weighed in at a whopping 21 lbs! He had another ear infection so we go to the ENT in April to get some tubes in. So, we're excited to get those put in, so no more ear infections. It's so wonderful to go to the doctor and only have to worry about 'simple' things. Sure, it's tough seeing him sick with ear infections or asthma - but shoot, this is SO much easier than seeing all the specialists, therapists, etc. with Payton. I'm thankful he is such a healthy little guy and doesn't have to struggle thru all the tests, doctors, specialists, and therapies. As I was leaving his appointment yesterday it was just a good feeling. So many times after Payton's appointments I left and cried the whole way home. I have not experienced that once with Koen and it's such a great feeling.

Happy Birthday, Koen!

Koen. I have no idea how to describe this wonderful gift God gave to us. We always describe him as the calm in our storm. We were so nervous about having another child because of how exhausting/frightening the first couple of years with Payton were, but we are so thankful we have Koen! Not only does he light up Bob and I's life, but he lights up Payton's too.

Happy Birthday, Bub!

Since Koen doesn't have any teeth yet his cousins thought it would be a great idea to give him some :) Koen kinda looks like he's gonna smack Tanner in this picture though!

And, Just FYI.........never leave Payton near a cake unattended. Even with me sitting right there I had no idea she was licking the cake. She is so sneaky!!!!