welcome new family

[Guest guest]

Leah

Welcome to the CHARGE family. What part of the world

do you hail from. You will probably find someone in

your " backyard " on the list. I'm from Pittsburgh.

(PA, USA)

As varied as our kids problems are, so are our kids

lives. The kind of life they lead depends moreso on

how hard you can fight for normalcy and how much crap

you can put up with.

My kid (severe unrepaired heart defect, low tone

(hypotonic), poor motor planning skills (global

apraxia), audio and visual processing skills, yada

yada yada (hee hee) is currently in an inclusive

preschool (with many typical kids) and takes ballet,

tap, and tumbling class with typical kids. The

downside is that she has a primary immune deficiency

disorder and doesn't fight off upper respiratory

infections (URIs) adequately. Has had repeated

pneumonias, croups, etc. Is never more than 2 weeks

without a serious illness (frequent temps of 104+).

So we are not sending her to school next year. If we

wanted her to keep having to adjust to her class with

extended absences and having to deal with helping her

stay " caught up " at home we could try, but it's too

hard and not the decision we wanted to make for her.

Ballet has gone very well. It makes me cry every time

she makes it to class because it's so hard to believe

that in spite of her disabilities she's in class and

the teacher spends time with her and treats her like

the other kids. She'll be in the recital at the end

of the year doing " Good Ship Lollipop " and " Teeny

Weeny Yellow polka dot bikini " with her classmates

(who are only 1 year younger than her).

Her social skills are extremely poor due to her

frequent illnesses, but she is a very resilient kid

who is very happy (when she's not sick or being stuck,

poked, or prodded). She rebounds like no other human

I know. In short, she's heavenly.

Just know that in spite of all the difficulties you

have ahead of you, these kids will amaze you, teach

you, inspire you, and make you proud.

Jeanne mom to Caitlyn age 4 1/2yrs cHaRgEr

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