Deep Breaths.

I don't know if it's just sinking in more, or if it's hormones, or just the roller coaster that I'm forever going to be riding, but this has been a very tough emotional week for me.

The older Lillian gets and the more she's becoming her own person, I can't help but just feel so sad that she is living a life that is going to be so hard for her. I look at her and just love her so much. I want so badly for everything to be the way we expected it to in the beginning. I want her to have everything that her peers will have. I want her to be active in school and have friends and boyfriends and get married. I want her to travel and be adventurous and go to college. The reality of her life is so different from what we want for her.

I struggle with figuring out how she brings me so much joy, when the thought of her life makes me so sad. I can't even put into words the love I have for her, and the joy she brings when she smiles or discovers something new, or even just when she sighs after a big yawn and rubs her eyes. I was doing so well not stressing about the future, but it's so hard to not think about when I'm faced with all the doctor appointments and therapy sessions and even though I know it's not a lost cause, sometimes it feels that way.


  1. It must be hard to deal with a reality that is so different than what you expected. All those feelings seem perfectly normal to me. While you may continue to have pangs of sadness for a long time, I believe you will be blessed by her in ways you could have never imagined.

  2. Don't feel like it's a lost cause...she was put on this earth for a reason, and she will serve a purpose, and she will be able to do so many things! I am sure of that! Thinking of you! :)

  3. She will be active in school and have friends and boyfriends and get married and travel and be adventurous and go to college.

    She just might not be able to do all those things as easily or in the same way as her peers. She has the love and support of two amazing parents and with that anything is possible-- it's all about adapting those things to make them doable for her.

  4. She is going to grow up and have a wonderful, happy life because she has two parents that will strive to help her achieve that. Do not diminish the efforts you and you DH will put into helping her achieve everything she will want. You and your DH are amazing people, with a network of ppl around you to support and love you - please do not forget it.



  5. I'm sorry you are struggling right now! It will get better with time I promise! The one thing that amazes me about my little guy is that no matter what he's the happiest kid around. And no one knows what the future holds for our precious little ones - I like to believe that it will be much better than we ever imagined. Of course right now, its so easy to imagine the worst! Keep positive - you are a wonderful mom!



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