Hypoplastic right heart syndrome!! You passed me in the shopping mall... (You read my faded tee) You tapped me on the shoulder... Then asked...`Whats hrhs? I could quote terminology... Theres stats that I could give... But I would rather share with you... A mothers perspective. What is it like to have a child with a CHD? Its Lasix,aspirin,plus 10 other meds.... Its wondering...Lord whats your will?... Its monitors and oxygen tanks... Its a constant reminder...to always give thanks... Its feeding tubes, calories, needed weight gain... Its the drama of eating...and yes its insane! Its the first time I held her...(Id waited so long) Its knowing that I need...to help her grow strong... Its making a hospital...home for awhile... Its seeing my reward...in every smile. Its checking her sats...as the feeding pumps beeping... Its knowing that there... is just no time for sleeping... Its caths,x-rays and boo boos to kiss... Its normalcy...I sometimes miss... Its asking...do her nails look blue? Its cringing inside... at what shes been through. Its dozens of call to her pediatrician... (She knows me by name...Im a mom on a mission) Its winters homebound...and hand sanitizer... Its knowing this journey...has made me much wiser. Its watching her sleeping...her breathing is steady... Its surgery day...and Ill never be ready. Its handing her over...( Im still not prepared...) Its knowing that her heart... must be repaired... Its waiting for news...on that long stressful day... Its ...praying...its hoping...that shell be okay. Its the wonderful friends... with whom Ive connected... Its the bond that we share...it was so unexpected... Its that long faded scar... down my childs small chest... Its touching it gently...and knowing were blessed... Its watching her chasing...a small butterfly... Its the moment I realized...Ive stopped asking...why? Its the snowflakes that fall...on a cold winters day... (They remind me of those...who arent with us today) Its a brave little girl...who loves her big puppy..... Or a special heart bear...or a frog in the rain.... Its the need to remember...were all in this plight.... Its their lives that remind us... we still need to fight! Its in pushing ahead amidst every sorrow... It is finding the strength to have hope for tomorrow. And no...well never be the same... Its changed our family... This is what we face each day... This is is what its like to have a child with a congenital heart defect!!
Posted on: Wed, 10 Sep 2014 21:45:34 +0000
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