Have you ever meet a miracle child? A child who should not be alive and has defied many odds? Caden is one of those miracle children. Cade has Epidermolysis Bullosa (EB) – The Worst Disease You’ve Never Heard Of. EB causes blisters on his skin whenever there is friction. He is lacking a certain protein that keeps the layers of his skin anchored together so when there is friction the two layers separate and cause blistering. He gets blisters from everyday interactions- picking him up the wrong way or even changing his diaper wrong can cause painful blisters on his skin. Sometimes we know what caused Caden’s blisters, other times we can only guess. We believe he has Dystrophic EB based on the symptoms he presents but lack the ability to get this tested in India. 70% of babies with EB born naturally do not make it to their first birthday and Caden celebrates his first birthday on Tuesday so he truly is a miracle child!
Happy First birthday Caden!
This little boy has stolen my heart
Everyday Caden endures an hour or more of painful bandage changes. Some days when I watch his bandage changes it takes everything in my power to stay. But I stay because although I can walk away from it I know that Caden will never be able to. This is his life and through it all he smiles. Despite the pain he is in daily Caden is one of the happiest babies I have ever had the pleasure of knowing. So many people come in and see him wrapped in bandages and assume his life is sad. But if they took the time to get to know him they would see that he is a happy baby who amazes me every day. Caden is a fighter- he fights through infections, pain, and stigma. He has a great support system at SCH that loves and helps him fight every day. So when we celebrate his first birthday we will not only be celebrating Caden but also the people who have made it possible for Caden to be a miracle child.
A part of Caden’s daily routine to keep his skin safe
Smiling through the pain
Every day Caden is reaching new milestones! As of right now he is able sit up on his own for 9 minutes. He is babbling and starting to make new noises. His favorite noise right now is growling- he loves to growl at random times. He is reaching for objects and putting everything in his mouth. He is almost able to roll from his back to his tummy. He loves his ayah and reaches for her whenever she walks by. He has discovered his feet and that his feet can reach into his mouth. Caden loves ice cream! A couple of weeks ago we took him out on an early birthday celebration to get frozen yogurt and he enjoyed every moment of his celebration!
Some of Caden’s support team
Caden and his beloved ayah taking a nap
The symbol of EB is a butterfly because people with EB have skin as fragile as butterfly wings.
Along with all these new milestones come new challenges with Caden. As he reaches new milestones he needs more specialized items to make his life as pain-free as possible. Unfortunately these items cost a lot of money and many of them are not available in India. In honor of Caden’s first birthday would you consider buying an item off his wishlist? Candace, a volunteer who fell in love with Caden and is now back in the States, is helping to organize getting supplies to Caden. We would love to see him outfitted in everything he needs to thrive in the upcoming year! Also Caden needs monthly sponsors to help him continue to receive all the care he needs. If you would like more information about being his sponser please email me at email@example.com. And more than anything else Caden needs prayer warriors who will rally around him and pray for him. He needs prayers for his health and for the right adoptive family to step up. Could you rally with us for Caden?
Caden’s Wishlist: http://www.amazon.com/gp/registry/wishlist/17DB1JQVEB23V/ref=cm_wl_rlist_go_v
Since I landed in the Hyderabad airport on May 22 I get asked the same question a lot. How is India? I usually brush it off with a generic answer but 5 weeks in here is my honest answer to that question.
India is loud. The whole city of Hyderabad is always pulsing. There is a constant off-tune symphony of horns, people, and animals all at once. My favorite time to see Hyderabad is at night. Usually I will walk with a group over to one of the nearby streets. The city comes alive at night and there are people everywhere. I love eating the street food and watching people as they go about their lives. India is always in your face, I can never forget where I am. Even just a walk outside can sometimes be a sensory overload- there are so many different smells, sights, and sounds. Sometimes I love the overwhelming nature of India and some days I just want to hide from it all.
India is beautiful. There are so many colors everywhere. Sometimes I love to watch the colors flash by from by auto or marvel at the beauty of the saris drying on the balconies. Other times the colors hurt my eyes and I can barely take in everything I am seeing. On Sunday I went Golconda Fort. The trip advisor reports made it sound run down so we were pleasantly surprised when we saw the majestic ruins. As we climbed up higher and higher I was struck by how beautiful the city was. Close-up there is grim and dirt but from up above the whole city gleamed white. This is what I feel like God is trying to teach me right now. Yes there is pain and suffering but he made the world beautiful and he made beautiful people to populate the world. And sometimes I get caught up in the details of life and cannot see the whole beautiful picture that God is making in my life. Sometimes I need to climb to the top and see the whole picture for the details to make sense. There is beauty in the path to the top.
India is hard. Communicating with people across language and cultural barriers is always hard and being in India is no exception. It’s hard to draw the line between respecting the culture and trying to get done what needs to be done. It’s hard seeing children and young adults with special needs and knowing how much better their lives could be if they got adopted. SCH is doing a wonderful job of caring for all their needs but at the end of the day they all need families. It’s hard to know that the more severe children- the ones who have a special place in my heart- have an even slimmer chance of being chosen for adoption despite the fact that they need specialized intervention that we can never provide. It’s hard to see social issues up close and personal. It’s hard to be surrounded by a religious culture that isn’t my own. It’s hard to be a minority and get constantly stared at and asked to pose for pictures. Some days being in India is hard.
India is joyful. Every day I find joy in the work I’m doing. I find joy when Katherine finally reacts to her visual schedule after weeks of repetition- even if it’s to cry when I give her the ball the signifies the start of her PT time. I find joy when I get chai shoved into my hands and am forced to sit and drink it. I find joy in the sunset, in the flowers that get put into my hair, in the sky that is just a slight different shade of blue than at home, and in the smiles that greet me every day when I walk into Courage Home. And even on hard days I still find joy all around me if I look hard enough.
So here is the truthful answer to the question. India is loud but beautiful, hard but joyful.