Monday, September 15, 2014

I've Probably Never Really Talked About It

As I was looking through Facebook last night I came upon a link to a foundation set up in support of the 22q11 deletion syndrome or DiGeorge Syndrome ... the syndrome that Emily has.

I went to the webpage and read some of the profiles of the kids with the syndrome and was reminded quickly of why I am not part of any of the support groups.
Emily is three and I still have a hard time emotionally when it comes to her syndrome.

There are close to 150 different ways that her syndrome can affect her...and it can affect every part of her body.

Almost every single thing that Emily struggles with on a daily basis can be blamed on her syndrome.

Here's a list of the main symptoms:

  • 69 percent have palatal abnormalities (such as cleft lip and/or palate)
  • 30 percent have feeding difficulties
  • 80 percent have conotruncal heart defects (i.e., tetralogy of Fallot, interrupted aortic arch, ventricular septal defects, vascular rings)
  • 40 percent have hearing loss or abnormal ear exams
  • 30 percent have genitourinary anomalies (absent or malformed kidney)
  • 60 percent have hypocalcemia (low blood calcium levels)
  • 40 percent have microcephaly (small head)
  • 40 percent have mental retardation (usually borderline to mild)
  • IQs are generally in the 70 to 90 range
  • 33 percent of adults have psychiatric disorders (i.e., schizophrenia, bipolar disorder)
  • 2 percent have severe immunologic dysfunction (an immune system which does not work properly due to abnormal T-cells, causing frequent infections)
Emily has palatal abnormalities, feeding difficulties, two different heart defects, issues with her ears/hearing, low calcium levels, and has had a weak immune system. She has other issues too, that are not on this particular list.  As for the rest on this list...only time will tell.

* * *

I'm not even sure why I'm sharing this with you...maybe it's my own way of trying to accept that this is real and it's hard, and it's likely always going to be hard.

Maybe it's to point out that Emily handles her challenges far better than I handle her challenges.

Or maybe it's to remind myself to go easy...to be a little more patient...to be a little kinder...not to Emily but to myself.

It's a constant battle I deal with: I'm not doing enough to get her to eat, I'm obviously not disciplining her the right way because if I were she would not feel the need to hit her syringe of food out of our hands 8 out of the 10 times we feed her, I'm not working with her enough at home on her therapies...

The list goes on and on.

The reality is that Emily came to this world holding a bag filled with difficulties that would last her entire life ... and those difficulties have nothing to do with what I see as a lack on my part.  They're just part of who Em is.

I should print that last sentence in bold ink and hang it on my bathroom mirror.

* * *

Listen, I didn't just write all of that for you to validate me ... I really didn't ...
But next time you see a mom you feel like judging because her child isn't buckled properly in the grocery cart, or because her child is behaving like a crazy person, or because her child threw up the minute she got too much water in her mouth or because her house is a disaster ...  or whatever it is ... just stop and realize that they probably have more in their own bag of difficulties that we give them credit for.

* * *

And now I'm going to go and soak in a tub because my knees hurt because I knelt on a roof for two hours tonight pounding nails into tar paper because it's going to rain on Thursday and I love my brother and sister-in-law and don't want their house to be filled with water.











4 comments:

Vijayalakshmi said...

Em has a heart, a spirit, a Light, a radiance, a charm, a sense of glee that no other DiGeorge kid has, that is special- only to her. I am grateful for that. x

Mom on a Line said...

Sending lots of love to you.

Leslie Burnham said...

And 100% of the children are human beings with families who love them. Noelle, I know you aren't looking for validation, but I believe you are such an amazing parent to this remarkable little girl.

Julie said...

You are an awesome mommy! Em is a wonderful handful. The two of you together, well it's heaven on earth. Blessings!