A mother should never have to.......

Tonight I am sitting in the hospital on the ventilator floor, C7 to be exact.  I have been asked to turn Mighty Z’s breathing pacers off and place a mask over her face to suffocate her to see if she has any response at all to being suffocated. I have actually been asked to do this before at CHOP’s (children’s hospital of Philadelphia). The reasons are different, but the actions and feelings of turning your child’s life support machines off and suffocate her are the same almost unbearable.

It got me thinking what a mother should never have to do. I asked many of my friends who have walked the halls of NICU’s, PICU’s and vent floors what are some of the things a mother should never have to do. Here is a list of something’s we as mothers of special needs children have been asked, told, or had to do.

A mother should never, NOT be allowed to hold her newborn.

A mother should never have to leave her child in the PICU for several months or even years.

A mother should never have to sign for surgical consent 22 times.

A mother should never be asked NOT to do CPR/life saving treatment.

A mother should never have to meet with the Ethics Board of a hospital while they determine if her child is worth feeding.

A mother should never be asked if they want to end a pregnancy because there MAY be a problem or disability.

A mother should never have to choose whether to trach their child or let them pass.

A mother should never have to leave the hospital with empty arms after giving birth.

A mother should never be asked to know more about her child’s medical needs then the doctors.

A mother should never be asked to let her child die for the sake of her other children.

A mother should never have to hear a doctor tell her , her baby will be a huge burden, if she doesn’t give the child up for adoption.

A mother should never have to look into the pleading eyes of their child whilst a horrible medical procedure is going on. (The pain and confusion on in a young child’s eyed that does not understand that it is for the better good.)

A mother should never have to pray to God, plead with God….. and never have to say – God it’s your will take my baby home … or let me take my baby home.

A mother should never have to tell their baby its ok if you’re tired and need to stop fighting. I won’t be mad…it’s ok.

A mother should never have to decide to place their child on hospice.

A mother should never have to be asked whether they would like to cremate their child or bury them when they pass.

A mother should never have to choose a casket for their child, plan a burial, or make a memorial slideshow.

These are the feelings of some of my beautiful friends who have had been asked to do these horrific things. I am not saying this because we want pity I am saying this so every one of you go home and kiss your babies be they old or young , and say a prayer of thanks giving that you never have been asked to do any of these.

As for you my sisters, yes I call you that because we are a sisterhood. Mothers of miracles, we are sisterhood of women who have been asked to do the impossible for their children.

 I am in AWE of you

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