Author Topic: hopeless diagnosis confirmed  (Read 2688 times)

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Offline calligraphqueen

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hopeless diagnosis confirmed
« on: December 15, 2006, 02:57:41 PM »
Yesterday, the genetic results for our daughter Heather came back.  While we aren't shocked by them, we are no less devastated.  Our daughter has Rett Syndrome, a rare genetic abnormality that almost exclusively harms little girls.  It only hits 1 in 10,000 to 15,000 girls, and we have been drawn to win this horrific lottery. It's a random thing, and nothing you can prepare for.

I am angry, and without hope.  My dh is even worse as the financial burden is crushing him.  He feels God has abandoned him, but only because he hasn't jumped through all the expected Orthodox hoops. (before that it was protestant hoops)  I can't rectify the idea of a "father" that acts in that manner, so I am just confused.
We need a miracle of great proportions and I don't even know how or what to pray.

Rebecca

Offline Cowboy

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Re: hopeless diagnosis confirmed
« Reply #1 on: December 15, 2006, 03:28:32 PM »
Dear Rebecca,

I will pray to God to give you the emotional and physical strength to lovingly care for your daughter. We must keep in mind that Jesus Christ promises us only one thing on this earth and that is a Cross. These trials are often harsh and cause us to ask "why me" or "why my daughter". But we must look to the love and mercy of Christ for solace, knowing that our time on earth is short and the greater reward awaits us. God does not punish, he gives us trials to provide an opportunity for us to emulate Him and overcome tragedy through love.

My heart goes out to you, and my wife and I will pray for you, your daughter, your husband and other children. May God keep you all in his loving care.
Barry

Offline FrChris

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Re: hopeless diagnosis confirmed
« Reply #2 on: December 15, 2006, 03:44:52 PM »
Rebecca,

I cannot give an answer regarding why this has occurred to your family, and really, no one can.

What we do know is that God does love you, your husband, and all your children. Right now we do not understand why this has happened---we are in shock, and even angry.
This is a normal human response to this situation, and you should not think less of yourself for these feelings, if in fact anyone in your family may be laboring with this feeling.

Because we cannot know why God is allowing this, we must act on things we do know. We do know that you are loved by God, each and every one of your family. We know He hears your prayers, and He hears our prayers that we offer on behalf of you and your family.

So, in all seriousness, I cry out: Lord, have mercy on your servants Rebecca and Heather, and their family, for You are a good God who loves mankind. Comfort and strengthen this family, and enshroud them, letting nothing come between You and them in their struggles.

Please keep in touch with us, letting us know how we can help.

+Fr. Chris
« Last Edit: December 15, 2006, 03:48:34 PM by FrChris »
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Offline ozgeorge

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Re: hopeless diagnosis confirmed
« Reply #3 on: December 15, 2006, 04:57:41 PM »
God knows the hearts of all men, and never tests us beyond what we are able to endure. Therefore, He must have great faith in you and your husband Rebecca.

May He hold you all in the hollow of His Hand.
« Last Edit: December 15, 2006, 06:07:08 PM by ozgeorge »
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Offline Fr. George

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Re: hopeless diagnosis confirmed
« Reply #4 on: December 15, 2006, 05:05:51 PM »
Lord, have mercy on your servants in the time when they need you most!
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Offline Starlight

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Re: hopeless diagnosis confirmed
« Reply #5 on: December 15, 2006, 10:50:47 PM »
Lord, have mercy. Lord, please help Rebecca and her family.

Offline aserb

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Re: hopeless diagnosis confirmed
« Reply #6 on: December 15, 2006, 11:04:39 PM »
Rebecca:

I cannot begin to imagine your grief, anger or disappointment and have no words for you except to say that you and your family are in my prayers. Lord Have Mercy !
Save us o' Son of God, who art risen from the dead, as we sing to thee Alleluia!

Offline Salpy

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Re: hopeless diagnosis confirmed
« Reply #7 on: December 15, 2006, 11:36:55 PM »
Lord have mercy!

Offline Fr. David

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Re: hopeless diagnosis confirmed
« Reply #8 on: December 16, 2006, 01:11:11 AM »
Oh, Lord.  Lord, please have mercy...

No words, sister.  We're praying.

(Oh, God...!)  :'(
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Offline Amdetsion

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Re: hopeless diagnosis confirmed
« Reply #9 on: December 16, 2006, 02:19:17 AM »
May the enduring mercy of Christ remain with you and your family.

May God lift the burden from you and keep you warm and safe knowing that all is well in His hands.

This is the time when our faith must be strengthened.

God has charge of you.

I pray that His will remain with us all.

May the blessed Virgin Mary mother of God send this prayer to her Son our Lord and savior Jesus Christ; sealing it with her blessed intercesion. We pray that her intercession will change this condition allowing perfect health just as her word to her Son caused him to change the water to into good wine at the wedding of Cana...Amen.

Fear not.

Remember your love for God when things are hard.

Peace in Christ

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Offline Gabriel

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Re: hopeless diagnosis confirmed
« Reply #10 on: December 16, 2006, 02:20:38 PM »
Lord Have Mercy!

 :(
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Offline Panagiotis

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Re: hopeless diagnosis confirmed
« Reply #11 on: December 16, 2006, 08:32:12 PM »
Kyrie Eleison!
May peace be upon you and your family during this time.

Many blessings and prayers for you and yours,
Panagiotis

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Offline Ebor

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Re: hopeless diagnosis confirmed
« Reply #12 on: December 20, 2006, 05:35:17 PM »
I am very sorry that you and your family are going through this.  We have been there to at least some degree when we got the confirmation that our youngest had Down Syndrome when he was about 16 months old.  Have you gotten any support or information about it from the medical people?  When youngest was diagnosed along with the doctor we had a social worker/counselor who gave us help and information and got things going so that we got into the "Infants and Toddlers Program" so that he could have Physical, Occupational and Speech Therapy.

With sympathy,

Ebor
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Offline jlerms

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Re: hopeless diagnosis confirmed
« Reply #13 on: December 20, 2006, 11:11:35 PM »
Rebecca,
My heart goes out to you and your little Heather!!  I can't come up with any words that can give you comfort but I will pray that your little darling's guardian angel is watching over her.  I am so sorry that this kind of thing could happen.  It seems so unfair and hurtful.  Lord Jesus Christ have mercy on Heather and her family.  May their suffering lead to many crowns won to be with You in Heaven.

with prayers, Juliana 

Offline Jakub

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Re: hopeless diagnosis confirmed
« Reply #14 on: December 20, 2006, 11:16:55 PM »
Prayers...

james
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Grant me the senility to forget the people I never liked anyway, the good fortune to run into the ones I do, and the eyesight to tell the difference.

Offline calligraphqueen

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Re: hopeless diagnosis confirmed
« Reply #15 on: December 21, 2006, 01:56:18 PM »
I thank you all so much for your prayers, they mean a great deal to me at this time.  I am stretched to my limit of endurance, and family is using the holiday season to cause trouble.  Prayers are wonderful!!

Heather was in the Project Daniel, or Early intervention program here but she aged out of it at 3, I think.  So they said school was the next option and the local doc pushed it hard!  It's only brought home lots and lots of viruses as Heather can't fight things off well.  Plus she can't be vaccinated due to severe family history of reaction-so she is that much more susceptible.  Dh and I are going to take her out and petition for a homebound teacher for the rest of the year.  We only have one medical supplement for all the therapy, so I am searching high and low for more options.  Water therapy costs an arm and a leg!  Once children age out of "early intervention" programs, it's either all on them or they get to dump their kids in the ps-which we all know can range from horrific to great in any area.  Ours is not so hot.

Offline Ebor

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Re: hopeless diagnosis confirmed
« Reply #16 on: December 22, 2006, 11:55:24 AM »
Maybe someone at one of these sites could be of help:

http://www.bundlings.com/irsg.htm

http://www.rettsyndrome.org/content.asp?contentid=135

Down Syndrome support groups were a big help to us when we got the news as well as just talking to people who had children with DS so they knew what we were going through.

Ebor
"I wish they would remember that the charge to Peter was "Feed my sheep", not "Try experiments on my rats", or even "Teach my performing dogs new tricks". - C. S. Lewis

The Katana of Reasoned Discussion

For some a world view is more like a neighborhood watch.