Written by Liana Karanyan (Dante’s mom):
It is not a coincidence that Dante’s name means “Enduring, lasting….” He has endured so much more in his 3 years of life than many of us will for the rest of our lives. When we picked this name for him and we looked up the meaning, I thought to myself that this is a powerful name and that whatever happens in his life Dante will endure it…if only I knew what I was asking for. However, I was not wrong. He has gone through a great deal in the last 3 years, but he keeps smiling and going on.
When we first found out that Dante has Canavan Disease, the world stopped turning for a couple of months. He was our first child, our parent’s first grandchild, whom we were all waiting for with great anticipation and joy. Never in our wildest dreams did we think about facing something as devastating as Canavan Disease. I will never forget the look on Dante’s pediatrician’s face when she was trying to tell us what Canavan Disease is and what we are facing. Finally she went and pulled her old Neurology book from Medical School and opened to a page where there was only one short paragraph written about Canavan Disease. She told us to read it. While my husband was reading it, I was just staring at the page. It’s like I forgot to read…I was frozen. All I knew was that it was very bad. The doctor kept hugging me and telling me that she is sorry. I still didn’t understand why…until later in the evening, while we were driving to church, my husband told me what he read; That our precious baby will never be able to walk, talk and will have a short life. And there it was…the turning point of our lives. The moment that the world changed from colorful and bright to dark and gloomy, and unfortunately until now and for the rest of our lives, we will NEVER EVER go back to the life we knew before Canavan. There will always be that missing part, that dark spot in our hearts, and all the stolen dreams we had for our little boy.
Nevertheless, we didn’t give up. We came home and promised ourselves to give Dante all the love, care, therapies and support he needs, and prayed to God to make his life as happy and as comfortable as possible. Many people around us told us to take him to a nursing home and that we need to “move on” with our lives…but how can we? Dante is our life now…he is part of us and the three of us have such a strong bond together that the thought of a stranger taking care of him outside his home, which he loves so much, breaks my heart into pieces. We love him more than life. We love all his special ways. We love it when we walk in the room and he gives us a big smile and he knows who his mommy and daddy are…that means the world to us. And if I were to go back and pick Dante as my son again, despite all the challenges, I will do it all over again. He is just an Angel from above and has taught us so much about life. He has taught us the true meaning of unconditional love and patience. He has taught us how to live in the moment and appreciate all we have and has brought out the inner strength in us that we never even knew we had.
Dante is 3 years old now, and despite his physical limitations, he is very alert and social. He understands words and phrases in English and Armenian. He recognizes familiar faces and greets them with his contagious smile. He loves reading books and playing with colorful and musical toys. He is currently being home-schooled and he just loves his teacher, his nurse, and all his therapists. He is just so pleasant and has the kindest soul and is loved by everybody who meets him.
W
ith all that said, there isn’t a day that goes by that I don’t imagine in my mind how tall and handsome Dante would look standing up and walking, or how he would sound saying “mama” or “daddy”, or how cute he would look playing on the playground with his friends…but then I stop myself and think of his beautiful smile and all his special ways that make him “Dante”. Keep smiling my Angel boy…that’s what keeps us going!
I can’t possibly finish my letter without thanking all the special people in our lives for all their love and support, especially my mother who has dedicated herself to us and Dante. Without all her help, life as “normal” would not be possible.
{ 8 comments… read them below or add one }
God gave Dante to you and your husband because he know that both of you has a BIG Heart that he will be safe on your side because, you will take care of him and give him all the love. On ever dream we have is free no charge but, all God’s plan is in his hand and he will take care of Dante, you and your husband no matter what happen. Liana, keep it up be strong SUPER Mama!!!:)
Take care and keep in touch remember I’m one phone call away..:)))
Liana and Family,
We all have a reason in life, some never find out their reasons, but for you and your husband Dante is the reason. I command you on your dedication and pray for your family……..what a beautiful letter!
P.S. Moms like you put the rest of us to shame!
To the best mommy and daddy!
I have known you ever since we were probably about the same age as Dante. If anyone has had the opportunity and the pleasure to befriend you, they would have to agree with me, that you are a one of a kind individual, with a heart that is big enough for everyone that you love. Without a doubt there is a reason why God has chosen to gift you with this special child, that will only take someone as wonderful, dedicated and patient to give the kind of love and care that you pass to your little ANGEL. It is people like you that make us want to be better moms then we already are, more appreciative daughters that we forget to be, and most importantly thrive to be the selfless individuals who give unconditionally. I wish you and your family a lot of patience and a peace of mind. I love you …and thank you for sharing your story because I really think it will make a difference in everyones lives, regardless of ever meeting Dante !!!
God Bless!
Dearest Liana and Richard,
Ive said it before but I absolutely have to say it again. You both are incredible parents. It is amazing and admirable to watch the world you have created for him that is full of so much love, patience and joy. He is truly lucky to have you. You have made the best world for him considering the scenario you are all in, trying to create as much normalcy as possible. Liana, I am so proud to know a strong woman like you. You are truly inspiring. I love the line in the letter about learning to live in the moment. He truly has taught all of us to see things in the largest perspective and be appreciative of the more important things in life. Love you and him very much.
I don’t know that I have much more to add to whatever has already been said, but I did want to join everyone else in embracing and celabrating the Babayan – Karayan family. Your unconditional love, patience, dedication, and acceptance is inspiring beyond what any words can possibly express. May God bless your family and may Dante bring endless joy to your hearts daily with all his sweet little ways.
I am doing a research paper and came across your story. Wow, thanks for sharing, I agree that our children are are children no matter whit thier limited abilities. Stay strong, sounds like you have a great support system!
hii.. good day! may I ask a question? Are you Jews? because i have a report about the Genetic disorders occuring in the Jewish families only.. Thanks and more power. God bless!
Hi Mharvin,
Although the Canavan gene is frequently found in people of Ashkenazi jewish decent, there are genetic mutations that cause Canavan that are found in people of all ethnic backgrounds, and there are many non-Jewish families who have children with Canavan.
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