Re: My Thoughts

[Guest guest]

a,

Some how, you just have to put your family's lack of response out of

your mind and don't let it interfere with the good things that you

are doing. A lot more people, than just family, will benefit from

the work that you do towards finding a cure for cf.

Chin up - we are with you!

Gale

> Thanks for the Reply..My Prayers are with all that have been going

> through Different Problems daily.....I Just feel Lead today ,to

Pour

> Out my heart...Someone sent me a reply that Stated 'I am Sure that

> your family will Appreciate all that you do for Xavier ( My Nephew)'

> I am Not so Sure that My family does.I am Really Not Looking for

> Thanks ,In what I am going to do and have been doing.I do alot of

> Research,Print Updates,Send Out letters and emails to

> family,friends.Etc.....My Imediant ( Sp*) Family,Like my

> Mother,Older sister and Younger sister ( Mother of Xavier ) Seem to

> think that whatever Is done for Xavier ,Is done B/c I want The

> Praise.....I Lead a Christian Life Now and I am happy In all that I

> do ...I can never Please them In anything,even If it is a Good

thing

> for my nephew...When Xavier was Born ,I never thought that I could

> handle the fact that he was Born with a Disease...But,After My

> Husband and I moved out to Washington State ,to take care of

> Xavier ;While my Sister and her (None caring) Husband worked,I knew

> that this was something God sent me to do...He had a Plan for me

and

> a reason for me being there.....I took it upon myself to be

Involved

> In all of Xavier's Appts.( As Much as I could) Did research,I also

> Took In twins To babysit at the same time that I had Xavier with me

> and In the Process of having to do all of His Meds,EVeryday....I In

> NO WAY want to be Praised for this....I did all this from my heart..

> Xavier,Is a Strongwilled Lil Boy,He has a smile that would Melt

> anyones heart,His Laugh will make you Laugh with him,When he

Touches

> you ,Your face Lights Up from the Love there..I was In Washington

> for Little over 1 year,Did My Mother call me ? The Anwser

> is 'No' ,The only way my Older sister and I spoke, was Online.I

> would and did feel Left Out of family Life back home and Since I

> have Left from out there ,They Still Treat me Like I am the Third

> party....I do Not Understand it...Was it something that I did ? Why

> can't they Just be Happy that Someone was out there for Xavier ? I

> can Not anwser for my family,as far as if they are saved....No One

> knows thier heart,But from the way they Live and their daily

> walk,They are NOT showing any signs of being a Christian...How can

> you Not care that someone is doing something for Xavier (Or any

> other Sick Child ) ? This Bothers me..I have tried to call them and

> ask them for help In Organizing the Cf walk for Next year,But From

> their Standpoint ,'It should be all about Money for Personal

> Use' ,Greed is a Big part In their walk and Life.! I know that for

> Sure! I can Understand my younger Sister being a Little Stressed

out

> with Her son having a Disease,But she is also Very Much Like the

> rest of my family.....She Does Not seem to take Heed to Things that

> need to be done for Xavier......She is a GREAT MOTHER,Do Not get me

> wrong......Even Now as I am here in Sc,I am Sure that she has done

> everything for Xavier...I want to keep doing all that I can to help

> fight Cf and find a cure,Plus help make others aware of this

Disease

> and others.I am Just at The end of my rope here on what to do and

> How to approach things.. Thanks for Listening.

>

> ~a~

[Guest guest]

a,

I wish that I had some amazing words of wisdom to tell you

unfortunately I do not. I guess what is important is that you know what

you are doing, why you are doing it, and what it is doing for Xavier as

well as all of the others out there that are fighthing this terrible

disease. I know you are not looking for praise perhaps I should have

stated that differently in the previous post I only ment that one day

your nephew will hopefully know all of the wonderful things that you did

to help in any way you could despite all of the negative things coming

your way.

IT is ok for him to be proud of his aunt. I understand having harsh

and sometimes hateful family I deal with this on every level of my life

not just with my boys and their health. Perhaps one day they will come

to their senses and realize that it is not all about them. Keep it up

you are a wonderful advocate for your nephew reguardless of your

struggles with family.

Love to you

Ashauna