Children with Beckwith-Wiedemann lead a completely normal life. The main concern is children with this syndrome have an increased risk of getting cancer during childhood. We now will have blood work every 6 weeks and an abdominal ultrasound every 3 months until you are 12 years old. John understands the genetics better than I, but what the syndrome involves is a difficulty in her ability to possibly absorb proteins which could lead to tumors. This explains the omphalocele that was present at birth I believe.
Not all children with BW get cancer. We are learning slowly what all this involves and most days it is just overwhelming to me. John handles medical concerns so well which has been so helpful and calming.
I have been so afraid of cancer since my father passing and sister-in-law passing away in 2006. My worst fear was one of our children getting cancer and to have to watch their precious little bodies suffer. The fear was even heightened with my mother being diagnosed this year. When the results came back for Lourdes, I almost couldn't say anything because the irony of the frequency of the testing was just too much.
God is certainly asking me to TRUST. The most beautiful blessing that has come with Lourdes is my increased devotion to the Blessed Mother. Shortly after she was diagnosed, I was sitting in front of a statue of Our Lady. I just looked at her and cried. She was only 14 years old when so much was asked of her. Her "YES" to be the mother of God was the WHOLE YES. From His birth to His death. She subjected herself to such humiliation and pain for so much LOVE. She opened herself up to such immense pain by saying YES.
For now, I just say YES. To watch your fears all being played out, what else can you do? I can do nothing else, but say YES and say "Jesus, I Trust in You."
We named her after Our Lady of Loudres. I know our little Lourdes is so special to Our Lady.
|She just woke up.|