Life with Ella and Emerson

This is a blog dedicated to my beautiful daughters, Ella and Emerson. Emerson was diagnosed with a rare, genetic disorder called Williams Syndrome when she was 5 months old.

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Location: Wisconsin, United States

Thursday, December 13, 2007

The Walker with Attitude!

Thanks everyone for your positive comments. I am out of my funk and life is back to normal. I think I freaked a few people out in my family with my last post. No, I definitely do not feel that way most of the time. In fact, those feelings surprised me. I'm sure they will surface again, but hopefully not for awhile.

Emerson is now walking more than she is crawling. Here is a cute video of her walking. You also can see her new little attitude she has developed. In this instance, she did not want Ella to help her and then came over to me to complain. Ahhhh, the sibling rivalry begins!

Monday, December 10, 2007


What happened to me this afternoon really surprised me and shook me a bit. I was sitting on the floor playing with the girls and I looked over at Emerson. She was simply sitting on the floor, looking absolutely adorable, paging through a book. Out of nowhere, I started bawling. I ran to the bathroom so that the girls wouldn't notice and I was overcome by feelings of heartbreaking sadness. I was simply watching an adorable 22 month old little girl look at a book and feeling devastated. I was feeling devastated because of all the hopes and dreams that everyone has for their children that are so unrealistic for me to dream for her. I was looking at her thinking that I love her so incredibly much and how unfair it is for her. What a raw deal she got. How unfair. How maddening. She has no idea. Right now she just looks beautiful, perfect, content, and happy reading her book. My heart feels like it is going to explode. Nothing is ever going to be easy for her. We are working so hard to walk and to talk and after that there is more, more, more. We will be working hard for so many years to come on so many things. On everything. I'm so sad for her, for the life that she won't know. She was sitting there looking so adorable and lovable and all I'm feeling is complete devastation. I haven't felt this much grief since she was first diagnosed. The phone rang while I was bawling and it was my best friend. I didn't pick up. I don't want anyone to feel bad for me. My heart is broken for my child and they won't understand, can't understand. I cried in the bathroom and prayed to God for some clarity. Some way to breathe again and return to my kids. I called out to Ella that I was going to get the mail. I needed fresh air. I grabbed the mail and ran inside. I have no doubt that when I looked down God was sending me a message. We received a newsletter in the mail and there was a poem on the front page that caught my eye.

by Charles Swindoll

"The longer I live, the more I realize the impact of attitude on life.

Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness, or skill. It will make or break a company ... a church ... a home.

The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past. We cannot change the fact that people will act in a certain way. We cannot change the inevitable.

The only thing we can do is play on the one string we have, and that is our attitude ... I am convinced that life is 10% what happens to me, and 90% how I react to it. And so it is with you ... we are in charge of our Attitudes."

Okay. I am listening and am open. I have had a great attitude about this whole WS thing. I have not let it get me down. I know that our journey with Emerson is not going to be easy, but I am not going to let it change me, my disposition, my overall attitude on life. We all have one shot at this and I am going to make my life matter, be meaningful, and most importantly be filled with love and happiness.

Don't get me wrong, I did continue to feel this pain, sadness, and pit in my stomach for the rest of the evening. I have cried now most of the night. I cried so much I have a pounding headache. I watched reality TV and ate nachos for dinner. Tomorrow I will wake up and start a new fresh day with a new attitude. I felt this grief consuming pit and will not be sucked into it. It is awful and no place for me. I want my life to be happy and fulfilled. I want my children to be happy, no more. If they are happy, I am happy. Wish me luck, but I do know that God is looking out for me.

Saturday, December 08, 2007

Almost There

I haven't updated in so long, I don't even know where to start. I have a nice chance right now because the kids are in bed and Brian is wrapped up in the Wisconsin vs. Marquette b-ball game.

We are doing well over here. Emerson is continuing in her progress so we are just happy and content.

Those months where we have waited for something to happen seem so long that we are thrilled with her current progress. She is walking about half the time now, though I wouldn't consider her a "walker" yet because it is still so hard for her. She is sticking with it more which is helping. Her PT made her a weighted vest and put the weight around her core which I think is helping. She only wears it 30 minutes per day, but I see her gaining confidence. She is also communicating so much more. She is using lots of signs and is just taking so much in. She is just really impressing me lately. One example is I was telling her OT the other day about her favorite book called "Hug". While I'm describing it Emerson crawls across the room, finds the book under the coffee table, picks it up, schleps it back, hands it to me, like, "Here you go, mom". We were both so excited.

Not so exciting news is that the Education Specialist from Birth to Three came out to evaluate Emerson and based mostly on interview with me (since Emerson was sick) told me that Emerson's cognitive level was around 10 months. Nope, I don't think so, wrong, not right, not accepting that information... I totally know that it is just a number and that it gets us services, but I wasn't ready to hear such a low number. Nor was I ready to feel like I am in total denial. Of course I know that Emerson is not at her 22 month age level, but there is also no way she is at a 10 month old level. Whatever, I didn't even get upset or cry about it because it just seemed so wrong to me. Thankfully, the evaluator was as sweet as pie, but I think she could see in my face that I also thought she was nuts. Funny, as I'm typing this I can feel my blood pressure rising and our 90lb Golden Retriever, Newman, tried to crawl up on my lap and licked my face. Thank you, Newman!

Ella is so excited for Christmas. Brian or I say a prayer every night before dinner and lately Ella has been chiming in, "I pray that Santa brings me lots of presents, AMEN!" What a character. She is so full of love and energy. As you can see she loves to make faces and constantly cracks us up. She really couldn't be a better big sister. She is so patient with Emerson and it's hysterical because sometimes I think she really is turning into a mini-Speech Pathologist. She reads her books and signs to her. The other day I overheard her say, "Watch my mouth, Emmie, Mmmmmonkeeeeey, Wow, good girl!"

Well, that's the news on us. We are just content and looking forward to Christmas. I think that I do need to start shopping this week. I like to procrastinate, but it will get done. Hopefully, I will get some good deals. No sale yet on our current house, but we do have a showing tomorrow. Our new home should be complete in a few weeks so we will have to figure out when we are moving. Yikes, I don't even want to think about that.