Williams Syndrome

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    I need your advice, if possible direct them to my inbox

    After being stressed out in the office, you got home only to find your wife / husband in bed with your best friend what would you do #ColdAgglutininDisease #ColonCancer #BrainCancers #Love #Depression #ParanoidPersonalityDisorder #WilliamsSyndrome

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    If I Could Keep You Little

    When my daughter was a baby I would read this book to her all the time. It was titled If I Could Keep You Little by Marianne Richmond. I loved having her in my arms, having her depend on me for little things, hardly understanding her babbling, and the many other things that come with having a small child those early years. Everything about motherhood was new and fresh. I was enjoying this new journey we had embarked on together. I loved it so much that I wanted to keep her little just like the book said.

    But what if what I was wishing for, for my child to be little longer, wasn’t really as magical as we thought it would be? Because let’s be honest, what parent has never thought about how great it would be to keep their son or daughter younger longer? But do we really know what we would be asking for?

    Because of Owen’s Williams Syndrome diagnosis we are keeping him little longer. It is known that children with this syndrome usually have significant delays in milestones throughout their entire life. For example, Owen will be 3 in January but is classified in the 6-12 month range with his therapists depending on the skills. We have also been told that as they get older “typical” things like driving, handling money, making friends, moving out, taking care of themselves are much harder or don’t happen at all. So while these may be an achievable goal for his Big Sister they may never be to Owen. Welcome to the unknown.

    To be honest we have never planned for Owen’s future more than about 6 months to a year in advance of the day we are in. We have fought to keep him alive every day the last 3 years and for every breath he takes we are eternally grateful for. And we don’t know when it will be when we finally stop worrying about his health or any surgeries that could lie ahead. We have been so focused on his medical side to even begin worrying about his special needs side, the unknown.

    So is this what we meant by keeping them little longer? Or were we just wanting to be able to turn it off and on when we were ready? So what happens when you are given a child with special needs that will be little longer not by your choice but by their genetics? Do you still consider it a blessing? Or has it turned into something else? How do you turn off the what if’s of life when they still linger in the crevices of your pieced together heart no matter how much you push them away? How do you keep from hating yourself for thinking of that selfish wish once upon a time when you didn’t know this life?

    Simple. You fall in love with your child’s face, his personality, his strength, his bravery and determination every day over and over and over again. Because he didn’t wish for this but he’s damn lucky to have you and I’m damn lucky to have him.

    Post

    Williiams syndrome?

    Love this!! Wondering if your would consider making one that looks like it has Williams syndrome! Our babies are adorable too!!

    Post

    My Developmental Twins

    Missed Exit for Normal

    My Developmental Twins

    JULY 12 · PUBLIC

    31 Reads

    I always wanted a big family. 3, maybe 4 kids. I come from a family with 4 kids and I always loved how my siblings and I grew up. The friendships I have with them are the best friendships I have, and once I had Anya, I really wanted that for her. Shane and I tried for another baby when Anya was about 18 months old. I always wanted my kids to be close in age. That didn’t happen. Anya was 4 years old when I finally got pregnant with a baby that decided to stick around, so I knew there would be 5 years between my kiddos once little man arrived. It wasn’t what I had planned, but is it ever?

    While pregnant with Wyatt, I started to think about him catching up to Anya developmentally, and then passing her up. I knew this would happen, ever since receiving Anya’s diagnosis of #WilliamsSyndrome, I always knew that if I had another baby they might be learning at different levels, but I never really thought about it. Most of my friends with children with an age gap as large as 5 years have completely different parenting experiences. Their older kiddos can help bring mom diapers, help entertain the baby, even hold the baby on their laps. They can be talked to and learn to understand what bringing a baby to the family means when mom is still pregnant. They get to really feel like a big sisterbrother. They get to play with the baby, and watch mom and learn about babies, to an extent of course. I knew my experience wouldn’t be the same. Anya, in some ways, still has the same needs as a baby. I still have to change her, feed her, carry her, comfort her by rocking her. I started to think about having TWO little humans that needed all that attention from me. It didn’t worry me though, I knew I’d figure it out. The part I was worried about was the milestones. I wondered when it would happen. Would I be teaching my children to eat solid food together? Walk together? Potty train? When would Wyatt catch up to Anya? Would I react appropriately when Wyatt passed Anya developmentally? Would I be the perfect amount of excited for him without showing how broken my heart is for Anya?

    Both of my children have given me such incredible gifts. Wyatt is giving me the opportunity to raise and watch a typically developing child grow. He learns things every day, and he fiddles with his newest skills for a day or two, masters it, and moves on to the next thing. I am so amazed by how fast he picks things up and by how quickly the time goes. Having Wyatt has shown me how these precious first moments with a new baby go way too fast. Saying that I’m thankful to have the chance to mother a “normal baby” shouldn’t in any way imply that I didn’t enjoy every moment of Anya’s infancy. But if you’ve only ever walked to first base, wouldn’t it feel amazing to be able to hit a home run and run all the bases? The important thing to know is, with Anya, I still got on base. And I’ll still get to all the others. It’s just a slower paced game. That’s the gift Anya has given me. All those moments that fly by with Wyatt, I’ve gotten to cherish and hold on to all of them with Anya. Every single one. She takes her time, and it allows me to embrace every moment with her. Wyatt grows so fast I can see why people mostly focus on the big milestones. Having Anya taught me to notice everything, all the little inchstones, and I love that she has given me that.

    But it IS hard. I act like it’s not, or I try to, but of course it’s difficult sometimes having a child with delays. Anya will do things in her own time, and I am perfectly okay with that. However, that grieving period I’ve talked about that happens after you receive a diagnosis for your child, it never ends. You will always grieve a little bit, and that’s okay. It doesn’t mean that you don’t love your child. Anya is one half of my whole world. But it is hard sometimes. If you’ve ever been that girl trying to get pregnant when every one of your friends is pregnant, you can understand. It’s that feeling of being happy for your friends but being sad for yourself too. The sadness doesn’t make you any less happy for your friends, it’s just two emotions that weren’t made to work together. I felt it when my nephews started walking. I was so happy for them, and OMG they were the cutest little wobbly walking babies ever. But immediately following the happiness, I felt the hard pit in my stomach. Anya’s cousins who are almost three years younger than her were walking before her. My heart was filled with all the joy and broken at the same time. And I know it’s going to be 10 times betterworse with Wyatt when he passes her up in these major milestones.

    Also, I thought I had more time.

    Wyatt is already right with Anya in so many ways. And it is SO MUCH FUN! Finally, they can play together, and Anya loves Wyatt so much. They could begin to play together when he started sitting up on his own. She would hand him toys or shake rattles for him and he’d even grab them out of her hands. Now that he’s crawling and cruising along furniture and walls the fun has really begun. They’re everywhere together! All those years we tried to give Anya a sibling were so worth it, because to watch them play together brings me so much joy. I feel like they’re going to grow up and be best friends. Wyatt follows Anya around everywhere. He’s so interested in what she’s doing and how she plays. They look to each other to see if the other is following or smiling or laughing. I could watch them all day. And I do! Right now, I have what I call “developmental twins”, and I knew this time would come but I thought it would be when they were a little older. I thought I had a little more time of Anya being the “big sister” and Wyatt being the baby. I never imagined having two crawling all over the house like little puppies that follow me everywhere lol. I always imagined it differently, but I stopped predicting Anya’s milestones a long time ago. When she was 18 months old and sitting, I thought for sure she’d be walking by 2, but she was almost 2.5 when she started crawling for the first time. Then I thought by 3. I don’t know any other kids with Williams Syndrome that aren’t walking by 3, so it has to happen by 3. By 4? 5? So I stopped predicting and started just enjoying where she is. I always try and focus on what Anya CAN do instead of what she can’t. All I can do is offer any help that I can along the way. Anya will always be Wyatt’s big sister, but the time when he’s going to pass her up developmentally is coming at full speed. Wyatt has already passed Anya up in feeding, and I know his physical milestones are next. He’s going to be standing on his own soon, and that will be the first time I’ve seen one of my children stand alone. Then will come his first steps. After that, it’s a blurry future, as I don’t have any personal experience having children developmentally older than 1. I’m really enjoying where we are right now. I love it so much, and I know soon everything is going to change. Anya and Wyatt will switch rolls. Wyatt will probably begin to feel like he’s Anya’s older brother. It’s why I’m so thankful they are already building such a strong bond, and I will help their bond grow so that these coming changes don’t hurt them in any way.

    As Wyatt grows and passes Anya up developmentally, I have hope that it motivates Anya to keep up with her little brother, but she will do things in her own time. She may develop at a slower pace, but she’ll never be left behind. Wyatt and Anya will always cherish each other. Soon everything will change, so I’m really enjoying where we are right now. Not many siblings with 5 years between them get the change to grow up this closely. To learn the very first life skills and lessons from each other. It’s absolutely heartwarming to see.

    It’s here, and it’ll soon be gone. Trying not to blink so I don’t miss a thing.

    Post

    Do any of you have any experience with #WilliamsSyndrome

    My darling nephew was diagnosed with Williams Syndrome and I have been reading a lot about it, but he has just been continued to be diagnosed with health issues and it would be nice to hear about life with Williams Syndrome. Not just all the medical stuff.

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