We created this blog to tell the world about our beloved daughter Vitoria, who with acrania and anencephaly, lived with us for wonderful 9 months of pregnancy and exciting 2 ½ years of life outside the womb. May everyone know about her sweetness and tenderness. About her life, humanity and dignity. All the precious lessons learned with this little angel that God has sent us. It was a joy to have her with us. Vitoria still lives in our hearts and it will always be an honor to be her parents!
“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
I´ve already mentioned how Vitoria has been able to make herself understood usingbody and facial language,and evenher voiceto communicate with us. She doesn´t speak English or Portuguese, but with love and sensitivity, I believe many of you can understand her too.
Thisis one of thebodily expressions that Vitoria uses to tell us that her gumsare soreand itchy
This is a pout she learned to do when she does not like something
And this is her angry face to scare people :-)
here a cute face
and a pinkpacifier completing herpinklook
her screamis as loud ashermouth isgreat when she wantsto protest *in these moments I say she is a lion- nowinpink versionand with bow onmane
and this is a naughty face (after throwing herself back, screaming and fighting with Marcelo). Note the force with she shakes Marcelo´s hand
here she is starting to make a crying face
and finallyanexpression of belovedsweetbaby, after allshe isall together-
This is a skateboard, aspecial standwe did forVictoria in AACD,so she canplay andmove aroundusingher legswhile shestrengthensarmsand spine tocrawl. For us it wasaspecial thrillto see herableto move withthisskateboard for children withspecial needs.
Make no store of wealth for yourselves on earth, where it may be turned to dust by worms and weather, and where thieves may come in by force and take it away. But make a store for yourselves in heaven, where it will not be turned to dust and where thieves do not come in to take it away: For where your wealth is, there will your heart be.
The light of the body is the eye; if then your eye is true, all your body will be full of light. But if your eye is evil, all your body will be dark. If then the light which is in you is dark, how dark it will be! But let your first care be for his kingdom and his righteousness; and all these other things will be given to you in addition.
Jesus, quoted in Mathew 6:19-23; 33
It's been a while since I came here calmly to tell the news. Our beloved Vitoria is going so well! We have a busy routine, we left at least three times a week when she does physical therapy, speech therapy and occupational therapy. At home, we play, we walk, we spend a lot of time together.
Vitoria has an excellent health and is an adorable, sweet and quiet child. Her biggest challenge has been teething. Up to 1 year and 1 month of age she had no teeth, but since then, every month she gets a new tooth. For some children this is a simple process, but for her it has been slow and painful. Now she has six teeth, and her gums are all swollen and red. I believe that there are four molars in the growth process trying to break through the gum and there are days when she gets desperate.
One day, when I tried to give her food, she pushed my hand away, then she put her hand over her face and pressed her cheek very strong, and spoke "aguuuu", as if she was saying, "it hurts, Mommy, I can not eat!"
She also does not like to sit in the car seat. Sometimes she is crying and squirming, but when I caught her in my lap, she sighs with relief, and then she relaxes and sleeps as if nothing had happened.
In contrast to frown and tears, she has also participated more when we play. One activity she loves is rolling. I put her in our bed and I help her to roll, she smiles, and then when I stop, she starts trying to roll alone. Sometimes she cries when she falls back, it seems she is afraid of getting hurt. But soon she tries to untap and continues playing. She loves me to do a double roll, helping her to roll and then roll again.When she can roll all the way alone, we clap, then we took her and give her a big hug and lot of kisses. She makes a beautiful face, of happy-cute-and-loved little girl. (When she can not scroll to the end alone, we help her finish the roll and then we kiss and hug her in the same way ;-)
She's having incredible progress. The simple fact of being alive and healthy is already a surprising victory and a great joy for us. But in addition, each month she features new reactions and progress that fill us with pride and courage. She can already eat food with small pieces. For lunch and dinner, she eats a soup with vegetables, meat and grains, and now I knead the soup with a fork and she mashes the pieces of vegetables before swallowing. In addition, she has expressed much more with her voice, she cries, complains, cries out in different ways and let us know if she's angry, if she's in pain, or if she does not like something.
She is also having many advances in her attempts to crawl, getting stronger and having better movements with arms and legs. Another great thing is that she is being able to stand when she is based on us and she loves it. Of course she still needs more balance and strength in her column, but her legs are very strong and it is a big surprise for us.
So, our little princess has shown more her strong personality, saying clearly what she dislikes, and also learning to express what she wants, what she likes, what makes her happy. Even without saying a word in our Portuguese, she tells us so much, and in a so clear, intense, and beautiful way, that brings me an indescribable sense of joy and freedom (and I wonder why we need so many words).
Joy of seeing that she is discovering herself, that she is communicating with us and helping us to know and understand her. Joy of seeing she is growing and becoming a loving and happy child. Her limitations do not prevent her from communicating with us - just make she communicate with us through a different language (but only those who approach of her with love and respect are able to understand this language, and have the privilege of participating of this different, but so special and beautiful world).
And the sense of freedom is because there are no limitations or challenges that can silence our happiness.
She is so precious and we love her more than ever.