Rare Disease Day 2016 ~ Postdiagnosis Happiness


After you get over the sorrow of the diagnosis, and start to make those few steps towards living again ~ you are forever changed. Who you were, no longer exists after an earth shaking diagnosis of NBIA – Neurodegeneration With Brain Iron Accumulation. Isabel has Type BPAN. Currently there are around 55 people worldwide diagnosed with BPAN.  Today is Rare Disease Day.  I’d rather celebrate it as Chocolate for All Mom’s Day.  My calendar didn’t agree. So Rare Disease Day it is. Somehow, somehow this challenge God throws so unexpectedly in the path of life is also God’s way of chiseling off hard rough edges, molding and reshaping my mother’s heart. Pain and suffering has a mysterious and undeniably real transforming effect; hopefully helping us be better, not bitter. If we let it, it can make us better mothers, better people. Suddenly, unimportant things become even less important. Things like joy, happiness, peace, love, contentment and above all gratitude are what my heart reach for. Thank you God, for the gift of this precious child. 💖 She can have Playdough all over our house and I will not complain; she can cut up books to her hearts content (well, kind of); dance and sing at the top of her lungs every single day; “Marker Embellish” every book in the house (well, kind of again); she can own a thousand pairs of “Fwop-fwops” (flip-flops are her favorite kind of shoe); she can leave Legos underfoot everywhere she pleases (though I might not thank her when I scream in pain stepping on them in the middle of the night); and it is my prayer Heavenly Father that you will let her jump on the trampoline all summer long this year….just one more summer, before she can no longer walk. Love. How can it grow so large that our hearts cannot contain it all? Having been given the gift to choose to love her, the gift that she is. Our Isabel. 💖 #RareDiseaseDay #2016 #LOVEthisKidSOmuch #LoveWhatIDo #joy #MorePowerfulThanSorrow #nbiadisorder #NBIAtypeBPAN #SoWhat #liveAMAZING #lifechanging #Life #liveauthentic #liveTheImportantThings

One thought on “Rare Disease Day 2016 ~ Postdiagnosis Happiness

  1. Oh my, what you must be going thru! I can’t imagine because I never went thru it. All we can do is pray and light candles for you and Isabel . My heart bleeds for you. Wish you were coming down. Maybe next year we can have New York in Naples !!! Love, mom and Bud

    Sent from my iPad

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