Worth it...


Days like today make me re-hash everything she's been through medically, discover where she falls developmentally according to doctors and makes me want to punch the word "milestone" in the neck.


Days like today make me understand how her needs will likely be met & hope special equipment & accommodations will be provided. 



Days like today make me re-live what I don't often reflect on; surgeries, illnesses, hospital stays & medications. 


Days like today make me feel the heavy of heart defects, Congenital CataractsHypothyroidism, Celiac Disease & all Down syndrome carries along for the ride.


Days like today I feel myself on the verge of slipping into a rut. 


But then I think of her. I think of what she brings to the table. I think of her how she's changed my world. I think of what she does for our family, our hometeam. I think of all the walls she's broken, milestone development charts she's proved wrong & the fact that she connects with me, with us, so deeply simply by being herself. I think of all the joy she brings, the contagious smile that no one can refuse & her need to get down to a beat, as much as humanly possibly.


 I think of her this morning, as she patiently waited for me to "find her." How she'll never really know, how nice it is to start my day with her face just beaming of love. 


video


I think of her this morning, as she tried so very hard to communicate. Her "toooo-ast" that she demanded for breakfast, followed by her ferociously signing "music" & then yelling out "Ma, Momma, Mom" cause I took too long for her liking. 



I think of her this morning, as she proudly picked out her own sandals, took her dad by the hand & led him to the front door to take her to "school-aka-daycare."


I think of all the way-too-many-to-count beautiful moments that she brings into our lives every day. And all I know, despite days like today, is aren't we ever lucky...




4 comments:

  1. Anonymous20.7.16

    Tara, don't forget about all of us out here who follow your posts and blogs and have learned so much about Down Syndrome...about acceptance and love...about how different really is so beautiful! Not just words but actions, pictures...feelings. Really attitude changing stuff that you offer free for the taking...just by opening your heart and opening ours. Yay for Pip! Yay for you!

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  2. I hear everything you're saying. I feel so much for my daughter, and it kills me when I can't make everything right for her, just because I want to. It's so hard when - although we created them - their lives quickly expand far beyond our grasp. It seems to me we control the little (unimportant) things, while the bigger (important) things must be left to faith and prayer.

    Our children are worth every minute - every minute we spend living with them, and every minute we spend thinking about them. The thinking minutes are heavier by far, and added up, seem to outweigh our lifetimes almost. But our children really become our lifetimes, and we wouldn't [couldn't now] have it any other way. <3

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  3. Anonymous4.8.16

    I have to saw reading this post really hits home and makes me feel so much more ready to welcome all the amazing (and difficult) moments we are going to experience with our little Fin! I find your blog a great support and resource to know that we are not the only ones experiencing all the up and downs of this new unexpected path, his path. I found myself a couple months ago watching your video presentation on your story just days after we received Fin's diagnosis. I found it so comforting to know we were not all alone in all the emotionsIn the initial stage and knowing that all the apportionments would slow down, and hearing that it there is so much to be grateful for and so much we can learn from him was a truly amazing frame of mind to adopt. I want to say thank you for sharing your story. Its been so amazing and reassuring to follow you on Facebook and see how adorable Pip is and how well she is doing.
    Thank You!

    ReplyDelete
  4. Anonymous4.8.16

    I have to saw reading this post really hits home and makes me feel so much more ready to welcome all the amazing (and difficult) moments we are going to experience with our little Fin! I find your blog a great support and resource to know that we are not the only ones experiencing all the up and downs of this new unexpected path, his path. I found myself a couple months ago watching your video presentation on your story just days after we received Fin's diagnosis. I found it so comforting to know we were not all alone in all the emotionsIn the initial stage and knowing that all the apportionments would slow down, and hearing that it there is so much to be grateful for and so much we can learn from him was a truly amazing frame of mind to adopt. I want to say thank you for sharing your story. Its been so amazing and reassuring to follow you on Facebook and see how adorable Pip is and how well she is doing.
    Thank You!

    ReplyDelete