Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

Busy bugs October 3, 2011

Filed under: Lila,Updates — Aimee @ 10:22 pm

I’m still here!!! I know, I know. A lack of new posts doesn’t encourage any of you to return to this page, but I hope you will keep coming back every so often to check up on Lila. Oddly enough, this is one of the only places I feel comfortable being “almost” entirely honest about EVERYTHING and I just haven’t felt like telling the truth lately. I was really struggling for awhile coming to grips with the shit storm we’ve been living in the past 15 months and the realities of the road ahead. But, I’m here.

For those of you who are still with me, thank you for hanging out. I’m making a point to get back to this blogging thing. Going forward, I will always make an effort to shine a light on the good stuff in our lives — there’s a lot of it — but I will never gloss over the difficulties we face on a day-to-day basis and pretend that things are easy.

So … there’s a lot to share and I won’t dump it all in one post. The biggest, happiest, brightest and BEST thing that’s happened since we last visited is our Lila Bug turning ONE! The days leading up to her big day were some of the hardest I’ve had. I cried. And cried. And cried. It was insane. On an average day I feel many different emotions as Lila’s mommy. I grieve the loss of her “normal” childhood — both for her and for Tyler and I — and I worry about the future. I’m angry that this is the hand we were dealt and I’m afraid we’re not doing enough for her. I’m starry-eyed when I look at her happy face and all I can see is that giant grin. I’m hopeful that she will do just fine and will end up living a life as fulfilling as yours or mine. I’m proud of how far she’s come and how hard she has to work every day to get where she wants to go. And I’m simply honored that someone somewhere chose me as the woman to help her along the way. The days before her birthday all of those emotions were swirling around x100.

But the day finally arrived and it was incredible. We went to Children’s Hospital for a visit with Lila’s NICU nurses, whom we haven’t seen since she was discharged last November. Lila had a physical therapy assessment, which she blew us away at. Then we all had dinner together and Lila had a piece of carrot cake. It was low-key and perfect.

All the while, of course, I had a big party in the works. So many people showed up to show their love for Lila and in many ways, this was our thank-you to them for supporting us through the past year-plus. We had family from West Virginia and Missouri show up to surprise us and it nearly knocked my socks off! (THANK YOU! I will NEVER forget that!)

Here are a few pictures and videos.

Lila, 12 months old

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2 Responses to “Busy bugs”

  1. Katherine Says:

    I don’t think she could be any cutier, what a doll!!!
    We call our daughter “Jada bug” and for her first birthday we also had a lady bug cake made. 😉

    I enjoy reading your updates! Too bad I’m so boring, haha.
    Take care
    Katherine

  2. Jessica Gessner Says:

    What a beautiful, heartfelt post Aimee. Lila is truly amazing and she does it with such a beautiful little personality. I have no doubt in my heart that your little girl is going to do amazing, amazing things in life! Her party was so fun and holy cow did you put some work into it all. You thought of all the little details, what a great day to look back on and see how much you were surrounded by family and friends that care about all three of you =)


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