Fine line of "hurt" vs "help"

While on this health journey with Nico we have seen many tests and labs done...

and since joining the Tubie community I have seen and heard the same things over and over;

"Why is my baby refusing food/bottle/pacifier since NG/fundoplication was put in?"

"Why is my normally happy baby screaming every time I come near them to clean  "insert body part or stoma site here", they never did this before we were hospitalized this last time"

"Why is my child becoming so combative with me?"

"It takes 3 or 4 nurses plus myself to hold my child down for any procedures now."

"I am so nervous to take my baby to the doctor, I don't want us to be hospitalized again"

"My child won't sleep without me rocking them since we were discharged"

"Our worst fears have been confirmed, we don't know anything more we will update you as we can"

And in my own research I have come to understand these are all traumatic stress responses in both the adults/parents and their children from the things done while their medical complexities were explored or hopefully diagnosed.

Now I am not a doctor, therapist, or any medical professional who can diagnose anyone.  

I am just a mother who has seen and felt all of these and more.

I have come to realize there is a fine line between Help and Hurt...

The tests, labs, procedures and things done at the hospital weren't meant to do harm, isn't that our perception of the Hippocratic Oath? 

"First Do No Harm"

This isn't actually in the oath, but it really should be and I think it gives parents of these little ones more hope and trust in the system that is really just as confused as we are why our child is struggling.

It's normal and necessary to find a place or person we can feel safe airing our concerns and flashbacks with and most especially the reactions our children have are just as valid as our own.

The test are by design sometimes VERY invasive because the signs or symptoms do not make sense outwardly.  And our babies don't understand why its happening so they respond in ways to let us know they are stressed, scared, or really just mad.

Please if your child is medically fragile still take them to appointments as often as needed, and if you start having your own traumatic responses (flashbacks, anxiety, fear, heart racing, chest pain, short temper) then seek your own medical appointment with a doctor or counselor.

You're child needs you to be the strong one who can smile through the tears, be the kisser of their boo boos from blood draws and biopsies.

And when they have their own meltdowns treat it with some grace, they have all gone and continue to go through so much in their short lives and I don't know any adults who would handle it quite so well.

There is a quote that I find to be my favorite, honestly it make me tear up when I read it...

The strength of these kids is unreal, They really are superheroes.

And the strength of the parents in this life is nothing to sneer at, you cry in private and pray that you would be in their place even just so they didn't have to feel one more poke, prod or stay in one more exam.

 Please give yourself credit where credit is due, it's amazing all the things you juggle on a day to day basis and do for them and the rest of your family.

So if you are a parent, patient or caregiver and you're experiencing anything I have described just remember...

There is a fine line between "Help" vs "Hurt" and you are strong enough to see this through.