Why there are Parents for Sick Children

What as Parents we do for our Children

How we see our role

and that question we ask ourselves


For Parents of ill Children

To all those parents that know…

I’ve seen you in those hospital rooms. I’ve seen you hand your child off to surgeons, not knowing if you would ever get to hold them again with a beating heart. I’ve seen you pray, hope, and hold on to faith with a sheer will that would put most to shame. I’ve seen you hold your baby with tears streaming down your face because this kind of sickness isn’t the kind that just comes and goes, this is the kind where no one can assure you that your child is going to be okay.

You fight for your child when they can’t fight for themselves. You hope for them and you stay positive for them, and then run to the bathroom just to cry where they can’t see. You research and talk to doctors and talk to other parents to find the best possible treatment plans and solutions to give the best life to your child. You take part in care for your child in ways even some in the medical field are intimidated by – dropping NG tubes, giving IV meds through a Broviac at home.

You go to the places no one wants to go. You know a side of the world that most would like to pretend doesn’t exist.

You call your child hospital your home away from home, and while the rest of the world may find that sad, you see the hope. It’s the place that gives your child a chance at life.

I see you, Mumma And you are loving that child unconditionally, just as you should. You are standing beside them come hell or high waters, and you are doing a good job. You are giving them the best.

You are their cheerleader. You are their smile maker. You are the one that knows their favorite songs and favorite toys. You are the one that knows how to calm them down, how to hold them, how to love them best.

While other parents know everything about their child’s sleep habits, you know everything about your child – where their normal sats should be, what their resting heart rate is, their normal pressures. While other parents can talk about their kid’s feeding schedules, you could talk all day about your kid’s anatomy, what surgeries are next, or what treatments are on the radar. While other parents are teaching their kids to crawl and to walk, you are teaching yours to drink from a bottle just to get rid of that dang NG tube, teaching them to bear weight on their legs and rebuild their core from the weakness of lying in a hospital bed all day. While other parents look forward to going out on a date night without kids, you look forward to the moments when you can grab enough hands to shuffle around a bunch of machines and a hospital crib to just hold your baby.

You would do anything for your child. And some of you have to brave the path that no parent should have to go down. Instead of debating the best way to introduce solid foods to a baby, you are making decisions with doctors on quality of life for your child.

To all of you, I see you. Hold on to hope.

Keep on doing what you are doing, loving that kid no matter what.

You are brave. You are strong.

You are doing a good job.

You are a good mom.


A Momma Who Knows

written by Lexi Behrndt
December 22, 2014

The Three Angels

Three Angels

 If at any time you thought to your self for a split second, WHY ME?  Read ……. Three Angels……. this might help explain, WHY YOU x 

“Once upon a time, three angels were busily working in the miracle factory. They were responsible for wrapping up all the little miracles and sending them on their way. Normally they wrapped each one in bright, sturdy paper with big, shiny ribbons. They stamped them with a delivery date and away they would go to the parents who eagerly awaited their arrival. Things usually ran pretty smoothly.

One day, however, down the conveyor belt came a little miracle that made the angels pause. “Oh my,” said the first angel “this one’s uhm…well…different.” “Yes, he is unique,” said the second angel. “Well I think he is quite special,” said the first angel “but I don’t think he will quite fit our standard wrapping procedures.” And the second angel added, “And we know he’s special, but will everyone else?” “Not a problem,” said the third angel “obviously a special miracle deserves extra special wrapping, and of course we’ll send him off with our most heartfelt blessings. Then everyone will see how special he is.” “What a wonderful idea!” replied the others. So they searched the shelves high and low for their finest paper, and their most delicate ribbons.

When they were done, they stood back and admired their work. “Beautiful!” they all agreed. “Now for our blessings,” said the third angel “for it is time for him to go.” “I will bless him with innocence and happiness,” said the first angel. “And I will bless him with the strength to face the many challenges that lie ahead,” said the second angel. “And I will bless him with an inner beauty that will shine on all who look upon him,” said the third angel. Before sending him off the third angel, who was very wise, gently tucked a note inside.

And it said,

“Dear Parents: Today you have received a very special gift. It may not be what you were expecting and you may be disappointed, angry and hurt. But please know that he comes with many blessings. And, while there may be a pain, he will bring you much joy. he will take you on a very difficult journey but you will meet many wonderful people. He will teach you patience and understanding and make you reach deep inside yourselves to find a source of strength and faith you never knew you had. He will enrich your lives and will touch the hearts of all who meet him. He may be fragile but he has great inner strength.

So please handle him with care. Give him lots of attention and shower him with hugs and kisses. Love him with all your heart and he will blossom before your eyes. His spirit will shine like the brightest star for all to see and you will know that you are truly blessed.”

Words used for research

Atresia de esófago.
Fistula traqueoesofagica.
Arnold Chiari.
Malformación de Arnold Chiari.
Escoliosis congénita y malformaciones asociadas.
Malformaciones del esofago.
Malformaciones de la tráquea

Tracheoesophageal Fistula (TEF)

H shaped TEF or h shaper tracheoesophagel fistula.

Esophageal Atresia
Feingold syndrome
 fistula traqueoesofagica con atresia
No stomach bubble in ultrasound then to TEF/EA
Atresia of oesophagus with tracheo oesophageal fistula
Atrezja przelyku (OA), przetoka tchawiczo przelykowa (TOF) polish
Esophageal atresia – esophageal blockage
Trachea Esophageal fistula ongoing adult problems
esofagusatresi In Swedish