[tri-med] Re: trisomy 18, omphalocele / trisomy 13 omphalocele

Hi Wendy,

I am sorry you have had to join this group of wonderful families.  I do not 
usually check our email, my husband Larry is the one that tries to keep up 
with all the families, so I missed you starting with us.

Our son was full T-18 with PDA, ASD, and large VSD at birth.  The PDA and ASD 
closed by 4 months.  The VSD however, we had surgery on September 19th.  
Unfortunately we lost him the next day.  He brought much joy in his short 
life.   Many of our friends have told us they saw the love of God when they 
looked into his eyes.  He just radiated with love.  We figured out early that 
he responded to love and prayer.

When I read your response to Joel and Becky, I was touched by your strong 
love of God.  I felt the same way you do.  God will take care of everything!  
I have always had faith that his will be done.  Although it was not easy, I 
knew all would be ok no matter how long we had our precious Philip with us.  
And it has been!  We felt quite early that Philip had many mission on this 
earth.  We also, know these mission were completed on September 20th when he 
decided to follow Jesus on his own.  When the doctors were working on him and 
I had to make the decision how far to have them go, Philip sent me the 
message.  I received the song "I Have Decided to Follow Jesus".  If you do 
not know the versus, they are:

I have decided to follow Jesus,         (Philip decided to follow on his own)
Tho' none go with me still I will follow      (he was going with out us)
The cross before me the world behind me     (he was baptised and comfirmed 
and                                                                             
                                   leaving this world)
No turning back, no turning back.

I told the doctors to stop.  I am convinced that it was my voice telling the 
doctors, but it was Philip saying stop.  This has comforted many times when I 
think about that Friday morning.

Keep your faith, keep praying and God will lead you where he needs you to be.

Your in our prayers!

May God Bless You,

Jackie
wife to Larry, mom to Tina 11, Tony 9, Philip (full t-18) ^!^ 6mo, Calico the 
cat

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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