Re: Re: - migraine issue and etc.

[Guest guest]

Hi Darla:

I know what you mean about "Normal". My sister used the term the average

child. That is a nice term. That is what they use for the weight and measuring

of children at the doctors office is what the average child would be at.

As you said, this is the norm for your child and what they do. My two boys

think of Leah as "normal" except when we need to do something we can't as

a family because of Leah's issues. But they yell at her to stop pulling

their hair, stop crawling on them or pushing them on the couch. And they

play with her. Just yesterday when it was a beautiful day here in Wisconsin,

they were in the sandbox with her playing and building things with her. It

was normal for Leah to be in her blue feeding chair playing in the sandbox.

They didn't think twice about it. So we use the word "average" to determine

the difference between Leah and the average child in what they are suppose

to be able to do..

Nerenhausen

mom to Leah

Darla Klein wrote:

We can't hide Asenath's as she is pretty obviously affected.

The steroids have made her very bloated and looks way overweight. Sadly,

just last October she was pretty slim looking. Everyone tells me she is

so beautiful and I know that, but it is still hard to remember how she looked

before steroids. We are very proud of her though and do not try to hide

stuff. We couldn't if we wanted to, but I try to use the opportunity to

share about Mito with someone who notices her leg braces or different things

and asks what's wrong. I like what a doctor said today to me about another

one of my children, something about normal versus not normal. I can't remember

exactly what he said but know he didn't like the word normal versus not normal.

Personally, I don't like to say they aren't normal kids either, it isn't

a question of normal or not normal, there is no such a thing as normal! , no two kids are alike and many have issues even when they look great.

Our kids have special needs that require some additional help and guidance,

sometimes lots, but why does that make them not normal? So.....if your daughter

falls a lot, or becomes affected in other ways that are more obvious to the

watching world, just remember that she is normal for what God chose to make

her. It's her "norm." And God does not make mistakes; He chose to make

our kids just the way they are. Hard to understand why sometimes, but I

know He doesn't make mistakes.

I appreciate all your help with the migraine issue. I hope your

daughter has a lot of success with the speech therapy. Asenath really enjoys

her therapist as they incorporates lots of books. Just a note, I noticed

you spelled Asenath's name a little different (others have too-it is different)

and thought I would help you know the p! ronunciation. (Asenath= As'-eh-neth)

Darla

-----

Original Message -----

From:

albregra@...

Sent:

Tuesday, April 06, 2004 7:30 PM

To:

Mito

Subject:

Re: Re: Darla- migraine issue

I understand the frustration. It is hard watching the other kids

do activities that I used to just take for granted, yet I am so glad that

I do have children who are perfectly healthy. I worry that she will really

want to do something just like her big sisters or brother, but not be able

to do it. ! So far she is physically normal. She does fall a lot, but

I do not know if it is the start to something or not. I try just to keep

her as normal as possible. I, like you, try to reward the accomplishment

no matter how small it may be to someone else. I worry about labels a lot.

As soon as someone hears that she is ill, it is hard to keep them from looking

at her differently. I know she will always have her special needs, but hopefully

we can "hide" them the best we can to give her a normal childhood. I am so

excited because she is finally old enough to start real speech therapy.

I am praying that they are able to get her talking, because right now that

is the only noticeable thing with her right now. (We try to hide the g tube

under big shirts, nobody has noticed yet!) Best of wishes for all your children.

I hope Asthena recovers from her stroke this week, fully and quickly.

Please contact mito-owner with any problems

or q uestions.

Please contact mito-owner with any problems or questions.

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