Our lovely little Lourdes

Lourdes.  You are almost three months old.  It might has well be three years.  She is so very sweet.  Your life has captured the hearts of our whole family.  The kids have taken to calling you Louie.  It is your first official nickname.  Your theme song is to the tune of  "Meet Me in St. Louis."  You certainly love your mother best of all.  You have a very sensitive stomach and really respond to what I eat.  You have really calmed down these past few weeks and are able to be more content for longer periods of time.  You are a smart baby.  You stare at patterns for long periods of time. 

Your well-child checks have been great and the doctors are so pleased with your progress.  We waited 10 weeks for your genetic testing to come back.  I had emailed the doctors a couple weeks previous to ask them kindly to email me the results as I seem to process life better that way.  When I noticed an email from the geneticist, my heart did skip for a moment.  She is such a kind and wonderful doctor.  The doctors were very confident that you did not have any genetic concerns, but wanted to be thorough while we were at the NICU.  Your testing did come back positive for Beckwith-Wiedemann Syndrome.  I think we all were shocked.  We spoke at length about what this meant for your life.

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 look back at her early days in the NICU and one of the worst of all days was the Tuesday after she was born.  It was the day they came to us and told us a possible tumor was found on her adrenal gland and we would re-scan in one week.  I remember that horrible pain of hearing those words and waiting those results. I remember sobbing from the depths of my soul that night at the thought of my baby having cancer.   Now, we are at that place again in a lot of realms.  Although, now we will do it every 6 weeks for 12 years.  I feel such a deep, deep pull of God calling me to TRUST and to learn to TRUST.
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.