Tell that to the Mama.....

    So I was in a Down Syndrome group the other day on facebook skimming through and I read a comment that really struck a cord in me....." Down Syndrome isn't hard."

  This was a few days ago and I seriously cannot shake those words. They have stayed in my mind and heart since then and I have pondered over them. First off let me say that I am not mad, I mean what  I think is hard and what you think is hard can vary alot and everyone is entitled to their opinion and with that being said here is mine.

" Down Syndrome Isn't hard."

Tell that to the Mama sitting in the waiting room while her childs chest is being cracked open and their tiny heart stopped to be operated on.

Tell that to the Mama fighting for inclusion so her child can learn with their typical peers.

Tell that to the Mama whose heart cringes when she hears someone tell a child much younger than hers to use their words, when she has yet to hear her child utter a sound.

Tell that to the Mama whose days are packed with therapy appointments and specialist visits.

Tell that to the Mama who runs her fingers down that long scar down her childs chest and remembers how close they came to losing this beautiful life.

Tell that to the Mama who sits in every IEP meeting with tears streaming down her face as she hears they didnt reach any of their goals this year.

Tell that to the Mama who hears her child cough and panics alittle and wonders if it will turn to pneumonia again this time.

Tell that to the Mama struggling to pay all the medical bills and wondering if she will every get ahead.

Tell that to the Mama who constantly hears the R word used in a derogatory way and her heart breaks into pieces.

Tell that to the Mama who watches her childs younger sibling walk circles around them and wonders when they will take their first steps.

Tell that to the Mama who walks into the room after their childs heart surgery and sees the machines and tubes and has to remind herself to breathe cause with that first glance her world is crashing down around her.

Tell that to the Mama who believes that words will come, and yet learns sign language in case they do not.

Tell that to the Mama who agonizes over what will happen when she is gone because her child is not able to live independently.

Tell that to the Mama who has fought, and advocated every single day of her childs life.

So no I do not agree with the statement "Down Syndrome isn't hard" cause I think it is.  Some days excruciatingly hard. Its also beautiful even on the hard days. Its also wonderful even when Im completely overwhelmed. Its also magical even on the days I dont quite see it that way.

Down Syndrome is hard, but  its the greatest journey i've ever been on. Even when its Hard I know my little guy is OH SO WORTH IT!!!!!