Helpful Advise needed

[Guest guest]

In about nine hours, my daughter is having the second of at least six

surgeries. I was wondering if maybe it ever gets easier? Are there any

tricks to dealing with all of these feelings? Tomorrow is the least

dangerous, she is having the stents in her nose removed, next step its

her eyes, and then her heart. Is there anything that makes this easier?

Thanks

Trish

Mom of DeJay, ah, and , 2 months, CHARGEr

[Guest guest]

Dear Trish,

I found a little 'coping help' in knowing there was no choice..that it had

to be done.

Just as I had nothing to do with Charge in the first place, I felt the

surgeries too,

were in God's hands, not mine. Worry and fear don't help anything to be

better.

From the beginning, the stress and shock forced me into a place of

non-thinking.

Looking back, I'd call it an unintentional surrender.

I'm no rock. She had her heart surgery at one month. For that, I drove

home and

huddled in a corner of the couch, waiting for the phone to ring. There was

no

safety for my heart that day. There was no protection anywhere from the

fear.

But I didn't know what I feel I know now.

And another day when a doctor called to matter of factly inform me he didn't

think she had any usable

vision, and therefore, probably no usable hearing either. (He was very

wrong.)

There are days you cannot protect your child or yourself.

But what came out of it for me was I felt I began to understand when it was

my job, and when it wasn't.

I couldn't sit in any waiting room. As soon as she went in, I left the

hospital. I'd walk,

get coffee, walk some more, and work at perfecting 'leaving it alone'.

What was going on wasn't my

job. When the call to recovery room came-then it was my turn again, to do

whatever I was called to do as her mother.

I feel I learned very quickly that I wasn't in control of much of anything.

And that was good.

I see our children, all children, as God's, with a purpose here that I

can't claim to understand.

But I feel peace in knowing that " it is not hard to do what He has

asked of me, as it is He Himself who does it. " And that it is safe to 'lay

down the burden and

put it in His hands.' Over and over, life shows me that " it's safe to turn

it over " .

Without that, I think we are very vulnerable indeed.

Holding in my heart,

in Ma.

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hi Trish..Im sorry your daughter has to have surgeries....I know from what

ive seen others say it DOES get easier. As kids grow they get stronger and

better at dealing with things and dont always get sick as often...

ill say a prayer for you

Belinda

>

> In about nine hours, my daughter is having the second of at least six

> surgeries. I was wondering if maybe it ever gets easier? Are there any

> tricks to dealing with all of these feelings? Tomorrow is the least

> dangerous, she is having the stents in her nose removed, next step its

> her eyes, and then her heart. Is there anything that makes this easier?

>

> Thanks

> Trish

> Mom of DeJay, ah, and , 2 months, CHARGEr

>

>

>

[Guest guest]

Hi Trish,

My son is 3 and has had 6 operations so far. None on the heart though,

his have been mostly for fairly minor things (gtube x 2, grommets,

orchidopexy, other investigations etc) and I would like to be able to say it

gets al ot easier but truly I am not sure that it does. You get more used

to the routine, you know better what to take, how he will be afterwards, I

think you tend to prepare better but from the moment when he goes into

theatre and The Waiting...no, I have to say that bit is still really really

hard for me.

I haven't come up with any tricks to making it easier so I will be watching

with interest to see what others say.

I just try to think positive and look forward to the call to the recovery

room, and the lovely sleepy cuddles I will get when comes round.

Wishing you all the best with 's operation. We'll be thinking of

you.

is (Mum to . 3.5. UK)

>

> In about nine hours, my daughter is having the second of at least six

> surgeries. I was wondering if maybe it ever gets easier? Are there any

> tricks to dealing with all of these feelings? Tomorrow is the least

> dangerous, she is having the stents in her nose removed, next step its

> her eyes, and then her heart. Is there anything that makes this easier?

>

> Thanks

> Trish

> Mom of DeJay, ah, and , 2 months, CHARGEr

>

>

>

[Guest guest]

Trish,

Kennedy has had 18 surgeries, and though I'm more comfortable and confident

with the hospital routines, doctors, nurses, and staff, it is still hard. I

feel like it's actually harder as she gets older. When she was a baby, I

think I was numb for a lot of the big major surgeries. Now that she's

older, I find it very difficult, I think about all the other surgeries she's

had and I hope " this won't be the one to get her " . I know it's awful, but

you can't help the way you feel. All you can do is try and stay strong, be

informed about the procedures, who is doing them, why they are doing them,

can other procedures be coordinated to lessen the amount of anesthetic and

so on. Information was the key to keeping me as calm as possible but it's

still hard when they have to go under, in my experience, that part doesn't

change; maybe it has for others, but I still find it quite difficult. I

just feel like she's come so far, I'd hate to lose her to some stupid

anesthetic freak reaction or airway issue or something. It's scary but if

it's any consolation, she's been through it 18 times and is still rockin'

and rollin'...

Hugs to you & ,

Mom to Kennedy

www.chargesyndrome.info

>

> In about nine hours, my daughter is having the second of at least six

> surgeries. I was wondering if maybe it ever gets easier? Are there any

> tricks to dealing with all of these feelings? Tomorrow is the least

> dangerous, she is having the stents in her nose removed, next step its

> her eyes, and then her heart. Is there anything that makes this easier?

>

> Thanks

> Trish

> Mom of DeJay, ah, and , 2 months, CHARGEr

>

>

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

[Guest guest]

Trish,

I cannot say that it gets easier. Just when I thought I was getting use to

Garland going in every year for an eye exam under anesthesia... WOW! I was hit

this year with so much anxiety that it scared me. I think because of the

complexity and severity of this syndrome we as parents knows it is not a minor

surgery. We know that with our children something minor can become major so

very quickly.

I can only offer this, think about each surgery or procedure as it arises. I

talk to many of my friends about how I feel before the surgery. I also pray and

try to give my worries over to God. I know that it is not easy, but hang in

there.

LOL,

, Randy & Garland Goodwin

---- Trish Gray tgluvly@...> wrote:

=============

In about nine hours, my daughter is having the second of at least six

surgeries. I was wondering if maybe it ever gets easier? Are there any

tricks to dealing with all of these feelings? Tomorrow is the least

dangerous, she is having the stents in her nose removed, next step its

her eyes, and then her heart. Is there anything that makes this easier?

Thanks

Trish

Mom of DeJay, ah, and , 2 months, CHARGEr

[Guest guest]

Trish,

I am reading this 12 hours after you sent it so I hope 's surgery

went well. I seem to recall the stent removal not being too much of a

problem but of course there is always the dreaded anaesthetic.

I agree with everyone that it doesn't really get easier, we just get used to

the routines and to ensuring that we discuss every detail with the medics,

ask lots of questions here before the surgeries, like , check out what

other procedures can be done while is under anaesthetic etc. Like

, we generally have a wander out of the hospital while she is in

theatre and know that we have our phones with us and we can get back within

minutes if needed as we are never too far. There is an element to which

other issues come up as they get older as we then have to also deal with the

children's emotional responses as well as the physical ones and our own

fears.

The only consolation I can offer is that with the multiple surgeries our

children have endured, they are still here with us and doing great things

that far exceed all the hopes and expectations we were given in those early

days.

Hope the other surgeries go well and it is always of some consolation to

know about other children who have undergone similar procedures successfully

so check in here and you are bound to find someone (usually lots) with prior

knowledge of the surgeries. No matter how old our children might be, we all

need the reassurance of someone who has been there before us.

Best wishes for 's recovery, future surgeries and your strength in

managing it all.

-

Flo (UK)

Mum to - CHARGE - (6) and Elly (4)

[Guest guest]

Oh Trish-

In some ways it never gets easier. I think that is the truth for me. has

had 32 surgeries. Many were diagnostic procedures with full anesthesia - yet

they still call them surgeries. There is still pre-op and post-op. 32. The

last four he remembers completely - unlike being an infant or preschooler, the

last four were his experience first.

However, acceptance, surrender, abiding faith, being in the moment, and the

thread of life - all it's beauty, miracle and blessing - become stronger and

deeper.

Our soul, like a vase, becomes cracked, and through the cracks shines the

brilliant light of love, of life and of hope. Deeper capacity for joy and for

pain. Deeper awareness of the connection between us all. Deeper acceptance that

it is what it is and there is divine grace in it all. No moment is inherently

" good' or 'bad', they are all equally magnificent until we apply a judgment upon

them.

Because you wonder, I sense you are already quite comfortable accepting. Live

with the open questions. Welcome the unknown. Stand at the edge and embrace

the mystery. Untangle your feelings and thoughts to the simplest threads and

embrace them. Delight in your magnificence and know the greatness of your love.

in love,

yuka

---- Trish Gray tgluvly@...> wrote:

=============

In about nine hours, my daughter is having the second of at least six

surgeries. I was wondering if maybe it ever gets easier? Are there any

tricks to dealing with all of these feelings? Tomorrow is the least

dangerous, she is having the stents in her nose removed, next step its

her eyes, and then her heart. Is there anything that makes this easier?

Thanks

Trish

Mom of DeJay, ah, and , 2 months, CHARGEr

.