Friday, August 6, 2010

Lauren is turning 1 and my hair is getting grey with worry

Lauren is turning 1 this Saturday. Its hard to believe that a whole year has gone by. Honestly, I think its been the longest year of my life. A year filled with dr. appointments, therapies, questions and very little answers. 

Lauren continues to develop but remains a big puzzle. One of my biggest worries continues to be her vision. Her vision issue(s) still remain "unsolved". I'm not expecting a solution, but at least an answer would be nice. We went to see the optho, who looked at her eyes and said functionally they are fine (yay), but is she interpreting what she is seeing we don't know. So he ordered yet another test and said the last test we had doesn't really tell us much. So here we go again, with more tests and more waits. Lauren "sees", as evident by her reaching for what she wants, but there are just so many inconsistencies. The more I read about CVI, I am sure she has some form of it. We asked the optho about CVI, who wouldn't comment on this diagnosis until more tests were conducted. I am frustrated about the lack of answers and the more I "observe" Lauren, the more baffled, scared, and helpless I feel. I just don't understand her.

And I guess it doesn't help that she is behind in meeting her milestones, so its hard to tell if she is just behind or this is the furthest she will get or if its something else altogether. Or maybe this is the way it is suppose to be based on her genetic makeup.

So my days continue to be filled with worries. I go to sleep worrying about Lauren and wake up worrying about Lauren. She is the first and last thing on my mind, every single day. When I think of Kayla, I smile and cry with joy because she makes me so happy. She really does. I wish that I could feel this way about Lauren, but with so many unknowns it scares and worries me. I wonder if the days of worrying will ever cease. I don't really every worry about Kayla anymore. I am confident about her, that she will be everything I dreamed of her to be. Lauren...again, I really just don't know. I hate feeling this way, and that I look at the two girls so differently and have very different aspirations for them. I want one to be "ok" and the other to be prime minister. 

So many nights, I wish that things had turned out differently. When I see other siblings, playing together, talking together, laughing together, smiling together, I wish that this will be Kayla and Lauren. It just seems so far away right now. Kayla loves Lauren unconditionally, and treats Lauren no different. I'm not sure why I have such a hard time doing this myself. Maybe I need the mind of a 3.5 year old. A simple, uncluttered, mind who just accepts Lauren for who she is. Kayla is fantastic with Lauren. She plays (its more like wrestling) with her, feeds her, helps her. The best part is, she always remembers her sister in everything she does. She always remembers to say bye to Lauren and to give her a kiss when she is leaving the house, when she does something, she always says "I have to get one for Lauren too" and she always asks "where is Lauren?" when she doesn't see Lauren. She is really the most considerate, thoughtful and sweetest person I know...and she's only 3. I'm really glad that Lauren has Kayla in her life. And I'm really glad that both Steve and I have Kayla in our life. I don't know where'd we be without our Kayla. 

So that's whats been on mind for the past couple of days. 

Birthdays are suppose to be fun, a time to celebrate, a time for smiles and laughs. But at the same time, they make you think of the past, the present and the future. 

Thanks for reading and listening, I feel a bit better now. Now on to make Lauren's birthday cake for the big day...


  1. I am not sure if this helps any but it took me awhile to get where I am at. (And I am still not "there" 100%). But what really helped was I stopped and looked at him. I realized he is my world. Would it really be that bad if at THIS MOMENT if he was like that forever? I realized I could handle this. I AM handling this just fine. He is not all of a sudden going to change into something scary. He will always be my little boy. The one sitting here right in front of me. The great thing with having chromosome abnormalities is it will be what it is. They are not very likely to all of a sudden regress and become something different. At this point it would be very unlikely for something to pop up and us loose them. At worst we will forever have someone so full of love and filled with child like imagination that we will also be kept forever laughing and young at heart through them. Unlike other people we do not have to go far to see what really matters in life. They will be there to remind us how precious life and love really is.

  2. I could have written your post. The twins' second birthday is in a few weeks and I get this weird feeling in my stomach when I think about it. One child is typically developing and the other isn't. It's so hard and I love them both so much that I would do anything for either of them. I just find that birthdays are a reminder that another year has gone by and more milestones were missed. *sigh*


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