ReCouping

We made it home sweet home on Tuesday night.  We found ourselves busy with catch up the rest of the week with work, as well as needing a few days to let all of what we had learned soak in.  It was a great event at the Partnering for Cures in New York, and truly valuable. 10 12

As parents, Steven and I often feel overwhelmed with what we are trying to accomplish in our future in Wylder’s honor for other children.  Even things that feel right, can feel overwhelming at times.  But this conference was a GREAT reminder that the business as usual approach for science isn’t working for those kids that need treatment options quicker and that the power of “citizen scientists” like Steven and myself is actually invaluable.  That part of the event was very refreshing and empowering.   

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As Wylder’s momma, being in this new scientific and non-profit space is emotionally draining.  I feel blessed that Wylder continues to show me the way and makes a difference for others, but it is a space I never dreamed I would be a part of, or understand so much about on such a personal level.  It is also such a heartbreaking and hopeless feeling to understand and see such a broken system, when it is our children that our being affected.  I just continue to keep an open heart and know Wylder will continue to show us the way to help others quickly!    

I returned home to appreciate the quiet of my own home and feel connected to Wylder.  I know my strength comes from him, and when I get home I feel like I can just be with him in the quiet times.  Sitting in his room and looking through his books and thinking of his GREAT life leads to days of sadness, but days of great gratitude and appreciation that I am his momma.    

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Now we are full speed ahead, putting a plan in order and getting a laundry list of ‘to do’s’ … ‘ta done’ (on nights and weekends over course)!   It will be a long process that we want to do to the best of our ability, so I am certain now more than ever that all of this upfront work will pay off.  We feel with perseverance and the lessons Wylder taught us in hand, we will be helping others in no time.   We understand all too well the importance of our goals, and we have great and strong purpose in our hearts. 

We love and miss you Wylder James, you make us so proud.   Xoxo

Bruiser, hope your liked your first trip to the big apple … and your Carnegie deli sandwich!  Yum, yum xoox

Comments

  1. hehe, “to-do” “ta-done”:) I love reading your writings:) I am so proud of you and Steven and Wylder and all you are accomplishing, you are truly becoming experts and I cannot imagine all the lives you will change because of it, i feel lucky to have you as a friend. I love hearing about all the amazing things you are doing-thank you. xoxo ,Chelsea

    • Mommy and Daddy says:

      ha ha, one of my most favorite phrases ever! Thanks for the support Chels, we always feel your all behind us 100% and we are so grateful! xoxo s

  2. Cathy Johnson says:

    “to-do” and “ta-done” just went into my daily vocabulary – what fun inspiration to get my stuff done! I totally agree with Chelsea – the things that you and Steven and Wylder are doing are amazing! I would love to help you get some of your to-dos ta-done, so if that can be accomplished long distance, please let me know. I would be honored! Thank you for all that you do and for your awesome posts. I love having morning coffee with you! xoxoxo

    • Mommy and Daddy says:

      Yes, indeed cathy (tee hee). I say it all the time, making steven cringe at my need to get things so desperately off the list (tee hee). We feel so beyond blessed to feel all the support we do from you all … and we love having our morning coffee with you too! xoxo S

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