It is painful beyond belief to be told that your precious new baby in your womb has ANENCEPHALY. Being told that your child has a disability can be as traumatizing as learning of a family member's sudden death. Instead of feeling that especial tremendous sence of joy, you may feel as if your world has been turned upside down. Most likely, you didnt care whether you would have a boy or a girl, you just wanted a healthy child. But it seems that the baby you dreamed about has not arrived. Receving such a message from your doctor can produce overwheming emotions of shock, disbelief, anxiety, depression, fear, anger, resentment, acceptantance and some times rejection, yes rejection of the baby, because we often fear of the future, and wonder how can we cope with this overwhelming change in our life.
My husband and I were stunned by such news. The first question that comes up after this diagnosis is "Why Us?" or "What did we do wrong?" and conclude for a moment that we are being punished for sins or bad acts of the past. It can't be real, you think. Something terrible like this happens to other people , you hear or read about all the time, but to us? It cannot be true; the doctor made a mistake. All kind of emotions may well up at once: guilt, grief and shame. Often the first reaction to the news that your baby has this lethal birth defect is intense grief and sorrow. We were in shocked, I cried for the first two weeks after the diagnosis, Rony become dejected and sometimes we couldnt express our feelings to each other. You may grieve the loss of that perfect child you dreamed of. Sometimes you may not even know exactly why you are grieving. What you do know, however, is that sorrow sits there in your chest like a ton of sand. This sense of grief is completely normal for us parents who have received such devastating news. Your grief will pass eventually, I promise.
But right now you may be feeling as if your heart will break any soon. How could this have happened? What I did wrong? the unfainess of it is beyond comprehension.
How did we survived all the suffering and pain? We are NOT strong to walk this journey alone, we need to seek God's grace to continue. God never left us alone in this, from the beginning He was there lifting us when we broke and we couldnt walk more. How we did find joy despite the suffering? Our Lord gave us the virtues to face everything, His amazing grace, His wisdom, His everlasting love, and peace in our hearts. Only by the grace of God, we made it through. We can still find peace and joy during the time of suffering.
We made so many memories when she still was inside of me. If we only had 5 more months to enjoy and celebrate her life, we will make sure those were going to be the best of her short life. Doctors told me she was only alive because she was connected to me, so that means that I was her life support, so it is important for me to love her, and show her I was happy, even those days that my heart was breaking into pieces.
We prepared for Angela's funeral before she was born. I only bought her 4 outfits, one for her Bautism, two to take pictures, if she would lived longer than few minutes after birth, and one she will wear for her funeral. What a journey we had to walk. As my friend Kellie wrote Love may cost us dearly She gave birth a beautiful little girl, her name is Lily Frances . She is an amazing woman of God, full of God's grace.Angela is ELEVEN (11) months today. Filled with LIFE!!! She is thriving and fighting. Angela was born with anencephaly and a brain encephalocele covering the opening, which resulted in having a large portion of her skull missing. Angela's piece of brain and spinal cord were exposed due to the missing section of skull and spinal fluid leaked from the opening. Angela was discharged from the hospital without medical intervention at two days of life, Angela was not expected to survive. Upon my request Angela's head was bandaged prior to discharge from the hospital and the Hospice nurse visit us once a week. My husband and I were her doctors, changing dressings everyday 3-4 times a day .As Angela's bandages needed to be changed several times a day due to becoming wet from the spinal fluid leakage. How she survived all this? God is good, He really is the giver and sustainer of life. He keep her alive to show that He is in control all the time. And all the sufferings that He allowed in our lives was to make us better people, better parents for our daugther, better wife and husband. Love suffers everything!!
She taught us life's greatest lesson. We have to choose to love. Blessed Mother Teresa said "love until it hurts". True love causes pain. Jesus, in order to give us the proof of His love, died on the cross. A mother, in order to give birth to her baby, has to suffer. We must have to love. If we love, we dont have room for the fear, anger or self-pity beacuse the result of loving is peace and joy. It was our choice to love Angela and love her until it hurts. If we love in all situations, only good will come of it. Nothing evil ever come out of love. If at one point you start to have negative emotions, it is because we are not choosing to walk in love. Angela is love because GOD is love.
We are very thankful for the months we have shared with this precious little girl. The future is still uncertain and the doctors are still in awe as we are- but one thing is for certain, we have our miracle babyand we are grateful for each day we have her. She is a gift from the Lord to bring honor and glory to Him alone and she is simply "on loan" to us until He calls her "home" and gives her a new body-- and in the meantime it is an honor to care for our little saint Angela.I know that she has touched many lives and continues to link people to God's perfect will. People who dont pray, prayed and continue to pray for us. Angela got them talking to God. She continue to change my heart. I know that I am transformed because of her. Everything about the experience defines who I am. All the trails and sufferings we experienced built our chatacter and our faith in God. I learned that if you offer your sufferings to God, He uses to draw you closer to him.
Romans 8:28 – Know that all things work together for good to those who love God
I also learned that true love involves sacrifice towards others. Love by it's very nature is self sacrificing in that it involves giving and not taking. God himself has given us the beautiful gift, by providing his own son Jesus Christ as a ransom sacrifice for our sins. This involved enormous sacrifice on his part for our benefit. Love "does not look for it's own interests". We are very realistic of Angela's condition, we know that she might never crawl, walk or talk. She will always depend on us but we are more than happy to take care of this beautiful girl. Now we dont focus on the things she might never do or CANT do, we focus on the things she is already doing, lifting her head, rolling to her side, cooing, smiling, recognizing our voice, mom, dad and big sister. She has already given us more than we could have given to her. We just going to give our lives to make her happy and take care of her so she can have a best quality of life.
Unconditional true love involves sacrifice, because it means making an extra effort for someone else-doing something that won't provide you any grand praise or recognition. Once you find that love, embrace it. Show your espcial someone how much you care and how much you love him or her. You never know when things will change. You never know when, in a moment, everything could be different.
True LOVE is unconditional, forgiving, understanding, caring and above all it continues to grow in the passage of time.
HAPPY ELEVEN(11) MONTHS BEAUTFUL ANGELA!!!
Mommy, Daddy, and big sister love you!!!
THANK YOU!!! THANK YOU FOR THE PRAYERS, THE LOVE AND THE SUPPORT
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PRAYERS AND SUPPORT FOR BABY ANGELA
