Saturday, May 9, 2015

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. 

24 comments :

  1. Such a sweet baby. And what beautiful faith and trust you have. I pray a miracle takes place and she does not develop cancer as is a testimony to our Lady of Lourdes. I agree that it is only when our worst fears are realized that we are really pushed to that point of "all in" "total yes". I am so grateful for your example as a living saint in our modern times. God bless you!

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  2. Thank you for posting and sharing Lourdes with us. She is beautiful as are your words. We all needed to hear this tonight. Happy Mother's Day!

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  3. Lourdes is so beautiful! What a honey!

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  4. She is gorgeous. And you are going through so much. I am praying for your pain and stress and also amazed by your trust and strength. Xoxo

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  5. She's look like zellie and vianney and clarveaux, so cute.
    I'm just like you my dad is passed away with cancer and my mom was diagnosed with cancer six weeks ago with neurological injuries, his fight is just beginning. i'm just afraid and understand your fears about Lourdes. Search still made progress with cancer. I will praying for Lourdes and your mom with my prayers for my mom.

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  6. Lindsay, Thank you so much for sharing! Lourdes has popped into my mind many times. I am sorry that you now have to carry this new, heavy cross, but I know you can do it with God's grace. Many hugs and prayers to you and your sweet, beautiful family :)

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  7. She is so lovely. She looks like baby Kapaun! Happy Mother's Day!

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  8. She just looks smart, so bright eyes and alert! She is indeed a very special child. She will remain in my prayers.

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  9. She is so beautiful! Happy Mother's Day and I'll be praying for your precious girl and for trust.

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  10. Aw, her eyes! They seem to hold an intensity & I see why you would say she's a smart baby, she also seems to hold wisdom in there as well. Excited to hear more about this precious soul as she grows. Praying for peace & trust in your mother's heart. I am especially devoted to Our Blessed Mother & I will pray that she prompts me to remember your sweet Lourdes in my prayers.

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  11. Lindsey, Happy Mother's Day! You are doing a wonderful job and you are such a wonderful mother. God will indeed give you the strength you need to face this challenge. He loves you and He loves Lourdes so very much. So many people are praying for you.

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  12. What a sweet darling little lady! I bet that girl gets so much love all day long from her siblings and you! What a wonderful family she has been blessed with to hold her and guide her through her mortal journey. One strong brave momma you are. Sending my love and prayers from Lincoln!

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  13. She is beautiful! Such a sweet, pretty baby.

    Thank you for the reminder that every day He wants us to trust in Him. Every day. Lourdes will remain be in my prayers.

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  15. Happy Mother's Day Lindsay. I have been praying and wondering how Lourdes is doing. Thank you for updating us. One of my children getting cancer is my greatest fear as well. Cancer is just so evil. My mother passed away from it when I was 16. Anyways thank you for the beautiful tribute to your mother as well. You are so honest and positive all the time. We will pray for Lourdes and for you. That you may trust God with her life and all that it entails. God Bless, You are doing a great job.

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  16. Love and prayers to your gorgeous little one!

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  17. Lourdes is just lovely! Truly! It's unbelievable how far has she come!
    I also think that God is allowing this opportunity for all of you to grow in holiness! He knows you can bear this cross! Trust, Patience, acceptance, co-redeeming with Christ in so many ways! And I know exactly the proximity with the Virgin Mary you say! She is so awesome and can get SO many favors from our Lord! Every time I beg her for something, specially something related to my family, she listens! Not long ago I learned from Madre Teresa of Calcuta, to pray the express novena: 9 "memorare" prayer said with a lot of intensity and meaning of the words! It is just so powerful and fills my heart with so much gratitude to think how Mary is so concerned about our needs! Peace, sister!

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  18. She is precious!!!! She is perfect!!! Prayers prayers prayers for you all<3

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  19. I want my love back in my life with the assist of astrology. There may be many causes of far away the love from my life but astrology is the best key solution to rectify the whole life. I want my husband back in my life because I cannot stay alone without him and unable to enjoy my whole life so I want my love back. I want my wife back, I want my bf back, I want my ex back can easily be got with the assist of several astrology techniques just making an appointment with expert astrologer Acharya Bhushan.

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  21. Your post on why most people stop at 2 children came on my facebook feed today. I was up to my ears with a crying baby, cranky toddler and whinny bored boys who would not stop fighting when I came upon it! As I have read on ...my heart softened more and more. I could only feel my love for my children and see the humor in their ways as echoed through your glowing words for yours. When I read how you wish you could raise your oldest son again I burst literally into tears at the recognition of how very final my one chance to do this right is! I thought of my oldest son as a toddler and a little boy so serious and determined. I think of him now at 8 with no more baby fat around his cheeks and adult teeth that make him look older still. I think how I would love to go back to that overwhelmed mother of one and tell her to savor it. Every moment. Hold it in and treasure it. Today I told my tired self of 4 to remember to do the same thanks to your grounding words.

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  22. I also read your post about having 2 children. And now I am hooked on the story of your children and family. I hope when I become a mother, I can be like you.
    I also am in awe of your sprituality. Thank you for your beautiful stories.
    Faith Tejero from the Philippines

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  23. I also read your post about having 2 children. And now I am hooked on the story of your children and family. I hope when I become a mother, I can be like you.
    I also am in awe of your sprituality. Thank you for your beautiful stories.
    Faith Tejero from the Philippines

    ReplyDelete
  24. I also read your post about having 2 children. And now I am hooked on the story of your children and family. I hope when I become a mother, I can be like you.
    I also am in awe of your sprituality. Thank you for your beautiful stories.
    Faith Tejero from the Philippines

    ReplyDelete