MacDougal

[Guest guest]

Dear -

Speaking for myself, being depressed as a CHARGE mom is totally normal. For me

part of it was the sheer depletion and exhaustion of getting through the early

years - it takes everything we have and then more - it is a time of the

" refiner's fire " . There is so much to endure. There is the sheer

unexpectedness of it all. Not only is it unexpected to our families, but the

diagnosis of CHARGE is often new to the medical experts as well. Being a new

parent is difficult enough, and certainly many a mom of a medically unremarkable

infant reaches exhaustion and depletion as their baby enters toddlerhood.

Magnify that by the medical necessity for us to stand on call 24/7 while also

trying to nurture and create a future for our child, and then magnify it again

by our call to stand at the precipice of the unknown, to embrace things that

most people don't even dare to fear, to be grateful for things most people never

have to see.

And as for the relationship between the newborn's mom and dad - again, even the

parents of a medically unremarkable child find rough times in the first few

years as the emphasis shifts away from each other and to the infant, and the

mother is " touched " out by caring for a completely dependant and demanding

blessing...... magnify that a hundred fold by the intense strain and stresses of

a medically fragile child.......

Big hugs to you for affirming your need. Sometimes identifying the elements

helps me disassociate from the experience a little - making it an experience

happening to me, rather than simply me (yuck!). Is there someone who can give

you a break? Someone who meets you spiritually where you are so that your

hearts sadness can be poured to their receptive ear?

Here are some adages I use to move me from a place of depression: Worry puts me

into the future. No " what if " questions allowed. Fear, like darkness, cannot be

negotiated, turn on the light. Everything I would trade everything for I

already have. Smile. Gratitude. I give myself time to silence my mind (which

means I have to let it wander for quite some time first ;o) ). This too shall

pass. I am not alone. I love myself.

Like the pain of childbirth, the darkness of those days seems remote to me now -

it will not be like this for long.. one day at a time.. baby steps... be very

very nice to yourself, BIG pats on your back for getting this far this well...

celebrate......maybe a single fresh flower in a vase where you sit..... any

small gesture for yourself

I hope some of this helped-

with love,

yuka

Update

Hi Everybody,

Little update on us

sorry i havent been posting much i am here everyday reading

messages.this with us are complicated.nathan is good hes been

healthy his new teacher starts wednesday{deaf and hard of hearing}

he now has nurses that come in 3 times a week hes doing great with

his oxygen at night hes now sleeping through the night{yeah nathan}

katelynn has been sick she just got over bronchitis and a double ear

infection shes happy to be back in school.

now for me i need advice again

i didnt want to burden anybody before but the last 3 months ive been

depressed i dont eat i dont sleep{unless i take medaction}is this

normal for a charge mom does it go away has anybody been through it

i dont know if its because of all the services hes getting or if its

because things are not going good between me and my husband maybe

its a combo of both ill take any advice you can give thanks

mommy to 18 month old CHARGEr

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