WHAT IS WRONG WITH YOUR BABY

Many parents are faced with total strangers coming up and giving unsolicited advise about child rearing. Here is my story of wonderful strangers questions, and advice on having a baby on life support

Oh, hello, person I have never met before! I am so glad you ran up to me while I am here at the grocery store with my baby who is on life support machines. You did not scare me at all when you ran up to me and screamed, "WHAT IS WRONG WITH YOUR BABY??! And, I am super excited to answer all of your questions.

What is wrong with my baby, you ask? OMG, are not all infants trached and placed on life support?? Does she have asthma, you ask? Yes, indeed-y! Instead of those pocket-sized inhalers, medical technology has now advanced to the point that they trach asthmatics and place them on life-support machines. (Who needs clutter in their pockets or purse when surgery and 24-hour care is an option?! That's what I always say). You are so smart and intuitive! Do I feed my baby through the tube in her throat, you ask? Why, of course I do! I put mashed potatoes and bits of meat down this long tube connected to the tube in her throat. Why do I carry all this equipment?Well, I haven’t lost all the baby weight and I thought maybe if I just carried a bunch of machines around, I could burn some extra calories. And, why is she making that face that looks like she is crying,but you can't hear anything, you ask? Silly stranger! She is practicing to become a mime, of course.

And, thank you, kind stranger, for telling me about your gluten-free diet and favorite vitamins, and how they will completely cure my daughter’s disease. You are so insightful, and it is a relief to know that a simple diet change and some vitamin C will change her whole DNA makeup. What would I have ever done if you hadn’t run over to me in this store to tell me that? What is that long tube and brown stuff that is hanging from a bag? Is it a cocktail? Why, yes it is. Would you care for a drink?

I wish I could spend all day chatting with you, as clearly you are helpful, considerate, and respectful of others, as opposed to being some nosy monster who is about to get kicked in the neck by a woman with a suction canister. What?? No! Don’t walk away! Please! We were just getting started! I want to answer many more of your intellectual questions!!  

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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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