Ebstein’s anomaly was the name of my daughter’s heart disease in her precious heart, this is what made her so special and even more due to the minimal frequency this disease happen. Your son or daughter have a condition today and the way you face this situation defines your life experience, it turns it into an eternal affliction or transforms it into a great gift.
1.Your baby is not his or her condition
My son is not his cancer, my daughter is not her heart disease, my son is not his Down syndrome, ultimately my son is not his body. You need to see beyond it, it is not easy but it is possible, you need to reencounter with your child, with the human being, with his or her soul. It is common to get confused and conceptualize a person in a very limited category as the body’s condition. “He is diabetic; he is hypertensive”. Your child is so much more and you need to connect with this part, where you see him like your son or daughter and not as your patient. You are not a doctor or a nurse, you are his or her mother. These are radically different roles, maybe at times you are playing both but in the end you must know it is completely different. While you are the nurse you shall take care, give medicines, clean, take him to the doctors and make sure he or she is ok. While you are his or her mother you will demonstrate how much you love your child, you will share laughs, read tales, eat delicious food, be in family. Do not lose out your maternity before the conditions you are facing, above all you are a mother and above all he or she is your child.
I make a calling to your spiritual being, that part of you that believes in a superior force. Religion is not important. In this sense, we must know we have been chosen, a mission of this magnitude is a true honor, to accompany our child to have an earthly experience filled with love, acceptance, compassion, empathy. They are special beings sent to us to learn from them and from life, that put everything in perspective, that demand us to learn the valuable things, to feel proud of them unconditionally, to feel gratitude for the simple and the great, they make of us better human beings, the show us their pure and true smile. Knowing you have been chosen as a mother to gestate and give birth to a special being is a great honor, a mission that needs to be abided with integrity and will.
3. Getting informed with measure
It is only natural that the moment we are informed of our baby’s diagnose we get immersed in the wide internet and investigate everything related with our child’s condition, we watch videos and images, we read encouraging testimonies and try to understand the anatomy of the disease. It is widely common but not necessarily healthy. All of the cases and statistics you may find on the internet are not your child because his or her specific condition, their organism and circumstances are completely different and unique. It happened to me that after an authentic digital exhaustion I got to the conclusion that the only veracious and transcendental information was the one provided by her doctors who knew perfectly what her condition was, her reactions, medications, analysis and every other indicator. This is the opinion that matters, that counts. I recommend to investigate but with measure and always keeping in mind that in the end the most valuable information is the one of those taking care of your son or daughter, for them always the attention and gratitude.
4. Say no to victimhood
Putting yourself in the role of victim is never a good decision and the most frequently asked question always is: why me? There is no answer to this question, it simply doesn’t exist and understanding this truth will bring you peace. You can’t live from that “must be” place because that is an imaginary world where no one suffers, but also where nobody grows, it is healthier to believe that the world is exactly as it is. Your child is not paying any debt or punishment, he or she has not a special condition because of bad luck or due to pregnancy issues. Your child is perfect as he or she is, the same person.
There is no more noble, sincere and highest act as being grateful, especially when you thank from the heart your baby’s life and condition. Thank you for this wonderful human being that chose me as his or her mother to share our lives, who trusted in me for this earthly life for he or she knows I won’t ever fail him or her! Thank you because every single day I learn about true, unconditional love. Thank you God for giving me the opportunity to serve you and life from my heart. Thank you for the laughter, the gaze, the gestures, the love. Thank you for my child is teaching about humility and trusting his or her destiny in God’s hands, his creator. Your grateful heart will take you to a state of peace where you recognize how fortunate you are for getting to know true love.