“But I am like an olive tree flourishing in the house of God; I trust in God's unfailing love for ever and ever”. Psalm 52:8


Rejoicing Comes In The Morning

"Never again will they hunger;
never again will they thirst.
The sun will not beat upon them,
nor any scorching heat.
For the Lamb at the center of the throne will be their shepherd;
he will lead them to springs of living water.
And God will wipe away every tear from their eyes."
Revelation 7:16-17

"Blessed are those who mourn,
for they will be comforted.
Blessed are the pure in heart,
for they will see God."
Matthew 5:4;8

On Friday afternoon, after such a tiresome week, with doctor appointments and Vicky's congested nose, we decided to go for a walk to distract ourselves. The visit with the neuropediatrician, on Wednesday, was very harsh on me. I arrived at the office a bit apprehensive, but expecting to find a doctor who would be interested in Vitoria, willing to get to know her and explore her potential. My enthusiasm started to fade as I was trying to explain myself. I told the doctor that we decided to continue with the pregnancy, despite hearing from many doctors that it would be better to terminate it. He replied me saying such advice was given because it would be too frustrating to follow Vitoria - to me and to him. I interrupted him and said: "No, it is not frustrating. To me, it is a pleasure to be with her. Perhaps you may not understand it because you don't know her, but she is very special, very expressive. She is very strong and she's been through a lot and she has always wanted to live". He interrupted me asking me, politely, to put Vitoria on the bed so that he could examine her. He looked at her quickly and, after a few recommendations, he finished the appointment. When we left, I got in the car with Vitoria in my arms, fighting the tears in my eyes. I think I even let one escape. But I breathed in deep, looked firmly at her and said: "I don't believe in anything this doctor said. You are a joy to me. You will never be a frustration."

During the rest of the day she rested a lot, and Marcelo and I tried to recover. We went through a lot of that kind of reaction during my pregnancy, pessimistic doctors trying to destroy our dreams and our faith. Even though we try not to consider what they say, their words do stir us. It hurts to realize that this child whom we love so much, who is so important to us has no value to other people, to the point they suggest her life was not worth it and therefore, should have been terminated. On Thursday I still had tears stored in my heart. In the morning, while I left Vitoria near the window to feel the sunshine. it was time to share my tears with God. I know He understands everything I feel. I know he wipes away my tears with His own hands.

But soon it was time to prepare Vitoria's lunch - soup of vegetables - make her inhalation, wash her
bottles, prepare her bottles... In the afternoon, with an attempt to move forward, to live, I went outside with her for a stroll around our condo. I still hadn't had the courage to do it all by myself - we live in a building with no elevators, it had been cold for several days, and now that the weather finally got warmer, she got a cold, she could catch too much wind... but today was a day in which a bit of wind was good. When I realized it, there we were, the two of us strolling by the neighborhood during a pleasant end of day. The sun was already setting down in the horizon, which makes the sunshine even prettier, of a whitened yellow, soft and tender, but still radiant.
Its light delicately stressed the contours of the landscape, and its rays softly touched us, as if lying on our skin and making us feel more alive. Yes, there we were, alive and walking outside during the beautiful sunset. Vitoria was very awake and aware of the change of the background around her. She yawned as bit, but made sure to be awake to enjoy the stroll. I told her I loved her. I told her to see what a beautiful day it was. Told her to feel the sun light. I said that she was alive and that it was a huge blessing. I told her I didn't know she liked to go outside so much!
When we went back inside she was very awake. I put her in her crib, imagining she would want to rest after our little trip,but she immediately tried to lift herself up.
She was moving a lot. I quickly grabbed her colored mats and placed them on the living room floor. I had to take advantage of her moment of disposition to move. She was determined to go forward. She would lift her head and put all her strength on her arms to support her trunk. She would try harder and harder, until her arms would tremble. And back there her legs were trying to coordinate to move forward. She would put her head down, from time to time, and soon she would start all over again. She was dragging herself forward. I tried to help her, positioning her arms properly to offer support. When I realized, her legs, which before were on the blue mat had already completely moved to the yellow mat. I think she kept doing it for half an hour, tireless, and persistent. Until I decided it was time for her to have her milk and rest.
The next morning, I put her in her crib to take her morning nap and left the room. After a few minutes, I heard her crying, and when I got back in the room, I found her lying across the crib, with her head on the side, crying because she couldn't get out of there! I was appalled! I grabbed her in my arms, covering her with kisses, and asked her: How did you do this, my love?

A profound joy flooded my heart and took away all sadness and deception from the last days, like a flash flood that goes down the mountains washing the earth and leaving only the plants whose roots are deep. Leaving only what is good.

There is nothing like the pure heart of a child to teach us that, when God is in our lives, we can use words that discourage us as motivation to excel. Such pessimistic words can be used to reaffirm how amazing everything we've been living is! And to serve as an impulse to move forward.

"Weeping may remain for a night,
but rejoicing comes in the morning.
You turned my wailing into dancing;
you removed my sackcloth and clothed me with joy"
Psalm 30:5b;11


  1. She is absolutely beautiful! Thank you for sharing this - we are expecting a baby with anencephaly in December and are praying for such a blessing! - The Aubes

  2. I just found your blog. Victoria is so precious! She is a miracle. Our daughter, Ella, was born with anencephaly May 10. She lived for 20 hours and was such a blessing. I am praying for sweet Victoria and your family!


  3. yes, it is sad when doctors and others do not see how "special" our children are...however, they did not give birth to and bond with our children, we did, and there is no reason to expect them to be as interested in them as we are. Your baby is beautiful, and I think that there is more going on in her head than with the average child with her condition - but the medical field can be harsh. Doctors, and some nurses, lose sight of humanity, of individuals, and only see us as "cases". Sadly, in Vitoria's case, what happened with her medically is not compatible with life, and had she lived longer, most likely she would have stayed the same in all areas except for physical size.

    I read in another post of yours about how you said that this baby has taught you how to live in the present - and if were her only legacy, it is a great and very very important one!! I agree with you that having her these past few years could not have been a hardship, I am sure it was a joy. I do not have the faith you have, though. When I hear you talk about how this child was a gift from God, and she survived because of God's grace...well, that makes me wonder why did God choose Vitoria and let so many others suffer and die? I feel he played very little part in this, and that the credit for her life and love and that she flourished was due to you and your husband.

    I hope you will have many more beautiful children, I know you will be a wonderful mom!

    1. Hi Deanne, thank you for your comment! Of course many doctors don't understand the love parents have for a child with severe disabilities, but we were very lucky to find amazing doctors in our journey, obtetricians, pediatritians, neurologists, nurses and therapists that showed an imense respect and love for Vitoria´s life, that talked to her and really worried about her wellbeing, that looked to her as a human being, as a person that was alive and needed assistance, and not only as an incompatible with life diagnose. Who demonstrated sensitivity and ethics during professional practice. We only had to look for them a bit more sometimes.

      About your hypothesis that Vitoria would have stayed the same in all areas except for physical size if she lived more, that's what we heard from some doctors since her birth, unfortunately from some of those who watched more to her diagnosis than to her. As she died, we can't know what would happen, but I can tell you Vitoria showed an important and evident evolution beyond the physical, during her life, especially in the emotional and motor development, smillig more as she grew, crawling (with some help, but moving forward), skateboarding, showing her wills, comfort and discomfort, calling us with her voice... she had a severe disability, of course, but she was not "vegetative" as people often say only thinking about her diagnosis. She lived her own story that was so beautiful, true and special in her own way.

      Finnaly, about the point of the faith, well, faith is a very personal experience, it is not only about an opinion and a way of thinking or believing. And in our personal experience and our personal faith, I can tell you we felt God with us and in Vitoria's life, in a very intense way, and we were very blessed in all challenges we faced with peace, love and faith as we connected with God and soothe our hearts in His spirit. We don't have these power by ourselves. This is so clear and proved in our journey, for us.

      About the babies with anencephaly that die right after birth, I also believe God was so present in their lives, and had a very important purppose in their lives and in their families, a purpose of love, independent of their lifetime. They are all very precious and worthy of love. This is the most important, in my opinion, to see God's grace, independent of faith, religion or anything else.


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We thank all comments of encouragement and love.

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