Posts Tagged ‘syndrome’

15/20 December Blog Challenge: A Difficult Time In My Life

I think that the hardest time in my life was when my daughter was born. It was such a confusing time. I didn’t know what was happening, why it my daughter wasn’t feeding or thriving, and my fiance though he was there for her birth he had to leave after about 36 hours as he was away for work (military).

Its hard to remember the details of that time. Sometimes I feel like it is all a blur. To give you some insight into the first bit of our daughters life, let me share with you some of what I remember:

Our night in the hospital just after she was born, was not great. She wasn’t feeding and was very floppy, and the nurses were becoming concerned.  They took her to the nurses station to keep an eye on her for the night, and let us ( mom & dad ) get some much needed rest.

The morning was the start of the scary part of that first 24 hours, and the beginning of our journey. We were woken up by the nursing staff, and brought out to the nursing station to see our daughter. I was so confused. I didn’t understand what was happening, why it was happening, and I was terrified. I cannot get the image of this photo out of my head even to this day. When I think about my daughters birth… this is what I see.

emelyn1

The nurses told us that our daughter hadn’t improved during the night and that they wanted to transfer her to a higher level hospital that had the expertise to handle complications.

I was so confused, I was so scared. This wasn’t what I imagined it would be like… It was as if the fears you push aside thinking they are ridiculous were all coming to life.

We were moved to another hospital. I remember the long ride in the ambulance. I was sitting up front while my daughter was strapped in the back. It was the longest ride of my life.

I spent 8-10 hours a day at the hospital with my daughter everyday(for 26 days). I remember a lot of the time we spent waiting for doctors or specialists to visit, or test results to come back. It was so hard. I am so impatient and I just wanted to know what was happening. No one had answers.

I remember when the geneticist first came to see my daughter.  She simply looked at her and made some speculations, ordered blood tests and was gone.

Genetics… I don’t think this really registered to me. I just thought my baby was sick, I didn’t really consider that something might be wrong in her genetics. Well, Google is usually a very helpful tool… unless your child is in the hospital.

I took the time to take note of the characteristics that were present with my daughter, the symptoms that the doctors keep mentioning when they examine her.  I entered them online, and I Googled.

A list. That’s what my Googling gave me, it gave me a list of about 20 disorders that had the same basic traits of low muscle tone and poor feeding which were present with my daughter.  I remember reading through the list of syndromes and ailments. Some were worse than others, some actually didn’t seem that bad at all.

This takes us then to the day I received her diagnosis.  I can still remember sitting in our cubicle cuddling my daughter  and the Doctor pulling up a chair in front of me.

“We got the genetics report back, and we have a diagnosis.”

Remember that list I just mentioned? And how I said some disorders on the list were better than others. What I didn’t mention is that there was one syndrome on the list, that with with all my heart, wished it wouldn’t be.

Then the words “Prader Willi Syndrome” escaped from her lips. The words that I was wishing it wouldn’t be. My heart felt like it had just shattered.  Anything she said after that is a complete mystery to me.

I had read about Prader Willi Syndrome. I knew what this meant. That my daughter would be hungry for life. That she wouldn’t feel full after eating. I didn’t know what to do.  I was so afraid, heck, I was already afraid of being a mom, about not knowing how to be a good one… how was I going to be a mom to a special needs child. One with such a rare complex disorder.

I remember meeting with the genetic counselor. I remember her explaining the genetics of it all… stuff I had already Googled, and even though I didn’t understand much of it, I remember only having one question when she asked.

Will she be smart?

This was the hardest time in my life. I don’t know when the hard part stopped… or if it is still happening. Those first few months seemed so dark and depressing. And while I am still in some ways coping with the realization of the diagnosis…. If I could see how bright and amazing our daughter is now… I would have saved myself from so much sadness.

She is smart, cheeky, clever, so so so funny, gentle, DETERMINED, kind and just absolutely beautiful. We are so lucky that she is still in the first stages of her diagnosis and ISN’T hungry yet. I truly believe that she is amazing and that she is going to keep proving to the world that her diagnosis is not going to hold her back in life.

Mira

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