Re: Missy long post

[Guest guest]

Hi Missy:

I know, we mom's are good at guilt, and also good at

convincing ourselves that we could have prevented this

or that from affecting our kids if we had only tried

harder or made different decisions, especially when a

child is ill.

I know my story is not as serious as your daughter's

but my first child, my son, now a healthy 22 year old,

was born almost 3 months premature. He had his first

heart surgery at 2 weeks, almost died during surgery,

and spent 3 months in the hospital before we could

take him home, at 5 pounds. He had to be tube fed his

milk, as his little heart would beat so hard and he

would become exhausted after only as little as 15 ccs

of milk, for the first several months after he came

home. Our goal was 30 ccs every hour, and increase it

slowly from there, just to keep his weight up. He was

on medication for his heart that he hated and would

fight us mightily to avoid it. It would break my

heart to hear him cry.

He had an emergency tracheostomy at 4 years after a

bronchoscopy (they had to do this prior to scheduling

his open heart surgery) caused his windpipe to swell

up so bad he could not breathe. So, he had the trach

and then went through open heart surgery all in about

2 years, and then one year later was put in a

medically induced coma for a week to repair the

tracheostomy. His last surgery came as a surprise 3

years ago when he developed a blockage in his

intestine, had to have resection, and this was found

to have also been a birth defect which had never been

noted before, because he had always been so small and

they felt it was because of his heart and asthma.

Hah. He's still small, he's all of 5'3 " and 115

pounds, but is pure muscle and works out daily. He now

teaches autistic children - seems to be able to really

connect with children who have special needs, I think

partly because he has been through and seen so much.

Well, all of this background to let you know that we

were truly tempted to baby him, and protect him from

everything and anything, from germs, from other kids

picking on him, all of the things that happen in a

child's life. But we didn't - his cardiologist told

us that he would know when to stop, when his energy

level would drop. He continued to be in and out of

the hospital with asthma attacks, and we were always

scared of the next attack, and if we would get there

in time. But we did not hold him back and let him do

whatever he wanted to do. He played little league. He

held his own against bullies who would pick on his

smallness by using his wit and quickness. We just let

him be a kid. We cringed and feared, but he was okay.

Yes, there were days that he came home crying and in

pain, and wheezing with his asthma, but he always made

it through. You are doing the right thing in letting

your daughter just be a kid too.

I know that these little ones with illnesses bring out

the most protective of instincts, but we need to let

them just be, and experience all that childhood

brings. They have to go through so much anyway with

hospitals, doctor appointments, etc. that they seem to

turn into little adults at times, but inside they are

just kids and need that kid time to help heal from the

other stuff that no kid should ever have to go

through.

I know that you must be a wonderful mom, and have been

given a special child to care for. My mom always said

that we are never given more than we can deal with -

well there were certainly days that I thought that God

had knocked on the wrong door with me, but we made it,

and I am sure that you and will too. You are

doing great, never doubt it, and you will see the

results of your love and care everyday in your

daughter's eyes. Take care - and make some time for

yourself too -

Kathe in CA

--- MELISSA CRIGLER <nmsanders@...> wrote:

> Thank you so much. I feel so helpless sometimes.

> She's been sick again. Flu Strain B and now another

> virus just 5 days after finishing her anti-viral

> drugs. She's so fussy. She had to miss school on

> Friday again. More makeup work. The teacher is great

> though. Even carries her up the stairs when she is

> in too much pain to go up them for chapel and choir.

> I'm afraid to let her do some things because I know

> it will cause her pain later, but I know she's a kid

> and just wants to play. She was jumping on the

> trampoline with her 8 year old sister and 21 yo step

> brother in from college on spring break last night

> and today her back hurts. I would have felt guilty

> not letting her jump, guilty not letting the older

> two jump just because Em couldn't, and now I feel

> guilty I let any of them jump because her back hurts

> now. UHHHHGGG Us moms sure know how to put a guilt

> trip on ourselves don't we? lol Her first grade

> teacher is so nice I know she'll let her take it

> easy tomorrow though. She lets

> her sit in a chair at circle time (while the others

> sit on the floor) if her legs hurt her. Well, I hear

> her up wanting a drink of water, got to go thanks

> for the encouragement!!!!

> Hugs

> Missy

> and 's Mommy

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