I was so happy to find out we were having him. Then within months after he was born we saw the first signs that something might not be right. He wasn't focusing. He couldn't hold his head up very well. My husband was training in the Navy as a Hospital Corpsman, and then he trained to work in Ophthalmology. This was one of many moments where God had our lives in hand, even if we didn't know it at the time. I had just turned twenty-years old, we moved to San Diego, California for his first duty station, and Tony got the chance to work with some of the best eye doctors in the country. He mentioned what we noticed about Anthony's development. He was suspicious and we took him in to get checked. This is when they discovered that Anthony had Glaucoma, which is almost always linked to brain issues when presented in children. This got a very sticky, and created a snowball effect that we could not have believed would happen if you had told us.
Our perfect, precious baby boy was about to live a three year, nine month nightmare that forced us to face just one of many horrors that would happen to us in our young lives. Anthony, only fully diagnosed after his death, was suffering with Muscle/Eye/Brain disease, an extraordinarily rare form of Muscular Dystrophy. He had an underdeveloped brain in his pons, cerebellum, and white matter. He had Glaucoma, extremely low muscle tone, his eyes stopped developing in the womb making him blind to the point that they thought "maybe" he could see lights and shadows. He was also deaf in the way that he could hear, but they suspected that his sound signals got mixed up in his brain. So we don't know what or how he could hear. Later we found out that he was missing a lobe of his lung and the other was deformed. On top of everything, he had grand mal and petit mal seizures. We almost lost him seven times to grand mal seizures with respiratory failure. He eventually could not eat and needed a feeding tube and lost what little muscle and brain matter he had. We worked tirelessly with the Louisa May Alcott School in San Diego, and then with the local special ed school in Landover, Maryland. We worked diligently with physical and occupational therapy and tried so hard to understand what was happening to him.
Anthony was number thirty in the world to have this disease. Needless to say, even the doctors didn't know much, or how to help him. At the time of his death the doctors were explaining that they had no idea how long he would be able to live. They threw out numbers like maybe ten years. In our hearts, after countless prayers, we knew in our hearts that it would not be that blessed. It was only months later that he took his last breath, as we held him in our arms and watched his innocent soul leave his struggling, withering, still so adorable, fragile body. My heart shattered that day. I had to break the news to family, who in a panic, were trying to get to us, from Ohio, as quickly as they could.
We had to learn that God had a different plan for him, for us. We had to learn to trust God in a new way, and we had to decide where our faith would lie and whether we believed God's promises. And I can tell you that those challenges were tried many more times since then. We lost two of our daughters to the same thing that Anthony had. We also faced a lot of judgement. Family especially turned on us and felt that we brought this on ourselves by having them. But when you pray, trust God, and search your heart over and over, until the desire to have that child is overwhelming... what else do you do?
I cannot say this more clearly, I DO NOT regret my children. Was it horrible? Was it the worst things to happen in my life? Was it all what I wanted for us... really? Do you have to ask. I can only repeat... I DO NOT regret my children. The experiences I had by taking a chance on them made me who I am today. I have more compassion, love, wisdom, joy, and fulfillment, because of them. I am a better woman, mother, and wife... BECAUSE of them NOT despite them.
Anthony was, and is a light in my life. He is a treasured memory. He is my boy. He is my angel, when he was alive and now that he is waiting for me in heaven, still being a big brother to his siblings. He will NEVER be a regret. I look forward to the day we will be reunited. We were sealed as a family ten days before he died and I will forever be grateful to my Heavenly Father for that blessing. He waited to give his baby sister Tia her second birthday. That is the kind of boy he was. What a grateful mom I am. I have been blessed to give birth to some of the finest people I have ever known.
For anyone who has never had a child, cared for someone (disabled), or lost a child... NEVER try to tell me that my faith failed me. Don't ever try to tell me that my God is my imaginary friend. Don't you ever try to tell me that I'm ignorant for believing in God, or an afterlife. You DO NOT have that right. This is my right to believe what I will. It is my decisions, and my right to believe in and to believe God and his promises. I CANNOT and WOULD NOT survive the tragedies that I have been through without my faith and beliefs.
I'm sorry, but nothing makes me madder than someone trying to force their views on me. If you have not lived my life, or even a portion of it... you have no right to judge me. Besides, I also have the right to teach those who wonder, who are curious, or who need to hear how and what I survived. I am a survivor and I am me... That's it. I'm doing my best.
If you have read this... "Thank you." If you are judging me harshly... I feel sorry for you and that is because I believe that we learn from each other, if we listen with an open mind. It is hard not to judge... I get that. I struggle with that myself. My hope, and "my" prayer is that this blog reaches someone. I hope it helps someone. I hope that I can teach and encourage anyone who needs it.
I love you Anthony. Thank you for letting me be your mommy. Thank you for loving Tia the way only you could. Thank you for making me a better person, in every way. You are my love and my life and though you have been gone, for longer than I can imagine, you are never far from my thoughts. Thank you for being mine. I love you. I miss you. I treasure you and all that you taught me. I treasure all the memories that continue to make me strong and very, very happy.
Rest in Peace my love.