She’s Not Something to be Handled or Overcome.

After a couple of days of uncertainty and tearfulness, Poppy is settling in beautifully.  She has done the more textbook style grieving than any of the kids who came before her, but we’re okay with that.  Currently she’s being “babysat” by ResponsiBoy while I write this post and then go for a run on the treadmill.  She isn’t screaming.  She’s not looking for me.  She’s playing happily.  Should she need to find me, she knows where to look.  She checks in every once in awhile and then runs off again.

Ah, attachment, there you are.  Welcome.  We love having you here.

Yesterday was a HUGE day for Poppy.  She had her eye exam under anesthesia, along with a whole slew of labs and some scans to determine what is going on with her eyes.  Turns out, it’s a little more than we thought, and in some ways, a lot less.

Poppy has officially been diagnosed with Peters (Plus) Syndrome. We were bummed to hear the word “syndrome”, but it is what it is. For now, we’re not sure how many of the “pluses” will affect our girl. She doesn’t appear to be severely delayed, she has no growth issues thus far, no heart defects that we know of, and no cleft lip/palate. Some of these issues we will check for now. Some we will watch as she grows. Peters Plus Syndrome is VERY rare and it is EXTREMELY lucky we have Poppy so that she can receive ongoing medical care and screening. Over the next couple weeks Poppy will undergo more testing to check for heart issues (oh the irony) and to check on her growth (again, slightly ironic that one of the other hallmarks of this syndrome is that she may be short statured). I have to admit, when these were both mentioned as possibilities I laughed.

God has a sense of humor.

Poppy’s eyes. Oh my gosh, are you ready for a book? She has a cataract in her right eye (her “good” eye). This has now been confirmed. It’s small and off to the side. It has likely been there since birth. That’s good. Her eye pressure was normal on that side…YAY. No glaucoma. She does have a Leukoma on her cornea in that eye too. Bummer. It is so small that we won’t do anything about that cornea for now. Her vision is okay in that eye. 20/40-20/50. AMAZING. She will sport a sassy new pair of glasses to help correct this.

Her left eye. They are going to discuss whether or not corneal transplant would be in Poppy’s best interests. The tumor in her cornea is very vascular. This puts her at high risk of transplant failure. Bummer. She also has mild Glaucoma. This makes the risk of failure even higher. So, we shall see. We may need to remove her eye. I was bummed by this, but encouraged they felt her other eye was stable enough to feel comfortable putting this option back on the table. So, we wait. I hope to hear something in the next couple of days.

We are abundantly blessed to have our girl, regardless of what happens in the future.  Cognitive delays, short stature, heart defects, kidney issues, whatever.  We’ll figure it out.  When I posted to Dolly and Poppy’s Facebook Group giving people an explanation of her diagnosis, someone helpfully sent me a message saying they were so sorry and applauded me for adopting Poppy, then going on to say they “could never handle a kid with a syndrome.”  Ouch.  What was, I’m sure, supposed to be a compliment of my strength came out very wrong.

Poppy is not something we handle.  She’s not a burden we shoulder.  She’s not something we overcome.  She’s a little girl.  A little girl we CHOSE to adopt.  There are no guarantees in adoption.  There are no guarantees in life.  You get a diagnosis.  You grieve.  You search out the best answers.  And then, you fight.

You fight because…she’s worth as much as any other child, and that’s what we would do for any child.

Swinging

 

–FullPlateMom, who is fierce about her girl.

2 Comments Add yours

  1. KELLY anderson says:

    I agree with you. But often people don’t know what to say because whatever “it” is is so far from the realm of what they imagine doing with their lives that they just think you are such a special person. Which you are but you are also an average mom who loves her kids.

    Like

  2. I just feel so sorry for her. But fear not! You will get over this. I wish you all the best.

    Like

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