Re: a rough week

[Guest guest]

, family members that are insensitive do not understand.

I have some issues " on my husband' side as well. The things they say or

dont say really hurt. I have tried sitting down and explaining things to them,

i tried and tried and cried and cried. They dont seem to understand that we

really need their love and support, needs hugs. They always come

through witha check, but i wish they would show up for things instead. I get

upset over the holidays b/c doesnt get from them what the other children

get, emotionally. At times it bothers me more. I have learned that i am

better off not expecting anything, and if we get something, i am happy. But

that

is not easy to do.

I have been told that they dont know how to cope, so they stay distant, that

could be.

My husband is the complete opposite, he is so nurturing with , she is

definelty a daddy's girl.I

So I guess what I am trying to relay is that there are alot of us out there

that are experiening what you are talking about. But remember there are a

lot of other family members and friends that will lvoe you adn your family and

give you much support. We get so much mroe from other family members and

firends. They will all learn tolove you all for who you are. Remember, our

CHARGE children are very very special and are only give to special parents.

What my husband used to do was take to one of his parents and put her

in their lap. didnt ask just did it.

Keep your chin up,

Cathie, mom to

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[Guest guest]

Gosh ,

That's an awful lot to deal with. I think you might want to call sleep lab

in the am with

a report to see what they say about trying to go ahead. It is a part of his

daily experience,

seasonally, so maybe it will give valuable information.

But it's more fun to avoid a repeat.

Our cranialfacial meetings were crowded. They offered many options, none of

which we

opted for. But they can do most anything.

I was holding out hope for your in-laws till I got to the kitten part. What

a shame, huh.

No wonder you want to be anywhere else.

I wonder if you could tell the old fella he should just be thankful it

didn't happen to him.

---

If it helps at all, people who are like that were usually treated the same

way he is now

acting. But we admire those who step out of that type of cycle. And

sometimes their

physical systems are just so toxic, that toxic comes out.

Don't take him seriously. Even if you can't control him, you can control

what you take to heart-and take only good. Let him own his own poison.

Maybe Mom in law can go with you. Sounds like she could use a break.

Put your favorite song in your head and sing away till they leave.

(That's an adult version of fingers in the ears and singing la-la-la-la-la)

Maybe you could just do that. lol. Do you think he'd get the point?

Best of luck,

We'll be waiting to hear. Lean on your hubby. Let him deal. He's had a lot

of practice.

in Ma.

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[Guest guest]

-

First of all, I totally understand your shopping situation. We are rural

also and always combine shopping with dr visits. We don't have time to go

out of town just for shopping! Be sure you enjoy the day and don't let an

ounce of guilt sneak in to remind you of the in-laws waiting. Your hubby

can manage them for a day without you.

I'm sorry Jack is having trouble with the secretions. You know, maybe it's

just as well that his sleep study be under those conditions. Either they

will find that he's doing fine - in which case you can assume that he must

be really good when he's not having this trouble. Or they'll find something

that needs attention and you'll manage it. I don't know how any sleep study

can give a true picture. Who can sleep " normally " with all that stuff

connected to them. Whatever. Let's just hope Jack does well so there is

one less thing for you to worry about. I can't remember if you have already

said that he appears to be having trouble. I'm just going to hope that he's

not.

We have also seen the cleft-palate team - tons of doctors in one day. It

can be overwhelming, but there is plenty of wait time between specialists -

that's when you can regroup. Since everyone is working as a team, you can

ask questions of them all. You know how often you think of a question after

you leave? Well, you'll have all day for those questions to pop up and lots

of people to ask. As always, ask, ask, ask - but if you get overwhelmed,

just get it written down enough to revisit it later. Be sure you bring lots

of snacks and toys to keep Jack occupied because it may be a long day. If

he needs a break, don't hesitate to let the nurse know that you need to take

him for a stroller walk, to the cafeteria, or whatever. She can work out a

short sanity break for both of you if you need it.

Do your best to get through the weekend. If you need to, get on-line while

they are in the other room and vent away! Then you can " let go and start

over " with them!

Michele W

Aubrie's mom 9 yrs