What do you say on World Spina Bifida & Hydrocephalus Day?
It’s a day that I never thought I would know about, much less “celebrate” and support as a day of advocacy for my child.
Here is what I’ve been pondering today as I’ve read many, many tributes to this day from my fellow mommas……
I’m still not okay with all this….. I’m not okay with my daughter having SB…..
And I’m OKAY with NOT being Okay.
I’ve learned the value of peace. I cultivate peace daily as I’m on this unexpected Journey.
I will not ever cease believing for her bodies complete healing.
My foundational belief of Healing–that it’s never God’s desire for us to have illness or disease– is not one that goes away when circumstances get hard.
Circumstances do not dictate Truth.
I’m learning to live in the “gap” between what I know to be true and what my eyes see. I’m learning to have peace in the “gap” until I’m no longer in it.
I will never be one of those mommas who say things like, “if I could change her diagnosis, I would not” or “SB is who she is and I would not change it”.
You. will. never. hear. me. say. that.
You also will never hear me say that I wish she was not here or some other nonsense about how I wish I had aborted. I’ve read too many stories in the news about that lately and it is utter RUBBISH.
Even knowing she had SB and given the choice, I would choose to have Rhema a bazillion times over and over and over and over– times infinity.
Rhema is NOT her diagnosis. Rhema HAS a diagnosis of SB & Hydro.
Rhema is my daughter, the love of my life, my heart….how could I choose not to have my “heart”?
So, here we are, 4 years into this Journey.
Today, once again, I don my SB awareness shirt and gear to advocate for my Rhema. I wear my pale yellow ribbon shirt to bring awareness, to generate conversations with the goal of demystifying her diagnosis.
You see, I know that Rhema is first a little girl, just like any little girl.
She is a child. A child. A precious child. My child.
She is life that has never and will never appear on this earth again.
She is life that should be celebrated, cherished and honored.
These things I know, and for these reasons I “celebrate” this day of awareness.
These are the thoughts I have today and everyday.
How do we unlearn bad teaching of separating folks into groups labeled “normal” and “abnormal”? What is “normal”?
Is “normal” the majority and those who do not fit in are then labeled as “abnormal”, “outcasts” and “special.”?
When did we stop celebrating uniqueness and began negatively labeling those who are unique?
When I see Rhema I see HER–a silly, beautiful, amazing, sometimes stubborn, little girl. Period.
Yes, I deal daily with her physical and cognitive challenges, but they are NOT WHO SHE IS!
THIS very reason is why I “celebrate” today, Spina Bifida & Hydrocephalus Awareness day.
To educate. To spotlight. To advocate.
Yes, in a heart-beat I would remove her diagnosis; take away all the pain past, present and future. Why? Because I know that is not who she is!
I’m not belittling her journey; I just separate the journey, from the child.
She is not her journey. She is not her diagnosis.
So, until my little Rhema’s body and mind is healed, I will wear my “team colors” of pale yellow and pale blue.
I will continue to have educational conversations with perfect strangers….
have awkward conversations with ignorant bless-your-hearts…..
stare down those eyes who look at Rhema with disdain…..
and advocate for her every need until her “field-of-play” is leveled.
You see, I’m ALL IN.
I’m an Educator. I’m an Advocate.
I am the momma of Rhema, who is a child with Spina Bifida and Hydrocephalus.