This is the story of Faith. Not the kind of faith that has to do with religion or God, but of my daughter, Faith. That’s not her real name, but it is the middle name I wanted to give her since before she was born. It feels especially meaningful to me now because faith is what she has had to develop more than anything in her short lifetime. I usually don’t share much about our challenges because I don’t want to dwell there. When things are hard, I have found that I must acknowledge it and give myself time to grieve, but then quickly move into faith and focus on how to improve things. I feel like this is an important story to tell though, because it might help someone else and because we could use a little help ourselves. Faith was born with something called congenital ptosis. There are varying degrees and hers is the most severe. She has no muscle in her right eyelid and could not open her eye at all as a baby. The doctors were concerned that her eye wouldn’t develop properly, so we were instructed to tape her eye up until she could receive surgery at eight months old. We were told that because of the severity of her ptosis, the only option was to have a silicon sling (like a rubber band) put in her eyelid and attached to her eyebrow so that she could raise her brow to open her eye. It was scary handing our eight-month-old baby over to a surgeon, but all went OK and the sling seemed to work pretty well…until it didn’t. Her right eye became extremely swollen in the summer of her first year. The sling had broken and we had to face putting her under general anesthesia again. It was harder this time because she had developed some chronic respiratory issues. Her pediatrician dismissed our concerns and advised us to go through with the surgery even though I was hesitant. The surgeon had a hard time bringing her back up after the procedure and after this horrifying experience, we spent the next 5 years working with integrative doctors trying to get her healthy. She seemed to be doing well and we joked that she was now the healthiest in the family, but the sling in her eye began to stretch out and not work as well anymore. She also complained that she could feel it “slipping” out of place and causing discomfort. It was a hard decision to do yet another sling surgery, but it bothered her so much that she wanted to do it. The surgery was very difficult on her and shortly afterward, a ball hit her face at recess causing the sling to feel like it was “slipping” out of place again. Doctors have always been stumped by her insisting that she “shouldn’t” be having pain or symptoms she has. Last year we discovered that she has a connective tissue disorder that can cause a whole host of issues from slow healing, to unexplained allergies, strange reactions to medications, dysautonomia, small fiber neuropathy, and more. This explains so much including why the sling procedure hasn’t worked for her and why the surgeries have been so hard on her. She has shed a lot of tears this year coming to terms with her challenges, but the problem is, even crying hurts!!! The sling in her eyelid has always caused her pain which is even worse when she cries. She hasn’t been able to rub her eye when tired and she has been afraid to play ballgames or roughhouse with friends for fear of having to go through another surgery or damaging the sling. We honestly didn’t know what to do next. This has been a difficult and lonely year for her but she is a fighter and we have held faith; Faith that we will find solutions and that everything we experience helps shape us into the people we are meant to be and helps bring us closer to how we are meant to serve in the world. No struggle and no tear that is shed is ever wasted. In the midst of all of this, she asked me to go online and find her a friend her age who has ptosis so she could feel less alone. I have been on ptosis groups since she was a baby, but when I got back online and searched deeper for someone her age to connect with we experienced what feels like a miracle. I found a girl her age who lives in Spain, had severe ptosis, and had a different type of surgery when she was about one year old. This procedure – the frontal flap procedure – uses the same mechanism of using the eyebrow to raise the eyelid, but does not require the use of any foreign material in the body. That was the only surgery she needed, her eye looks great, and she can rub her eyes, play ball games, and be a “normal” kid. Her surgeon, Dr. Medel, has been doing the procedure in Spain for 20 years with great success. He has helped over 600 children. He is considered an artist and people have traveled from around the world to bring their children to him for surgery. I wish that we had known about and found a way to take Faith to see Dr. Medel when she was a baby and I can’t help but think about how her life might have been easier if we had. I honor my grief, but more than anything, I am excited about the wonderful possibility that this could be a life-changing procedure for her. Again, I am faced with a challenge, but I know we will find a way. These last few years we have had a lot of medical expenses and I haven’t been able to work as we have been trying to get her healthy enough to attend school. In order to have surgery with Dr. Medel we will need to travel to Malaga, Spain in June. Because it is outside the United States it will not be covered under insurance and we will have to come up with the money for flights, car, and accommodations in addition to the surgery. We know that surgeries are harder on her than they “should” be so we are planning to stay in Malaga for three weeks so she has plenty of time to heal and recover in a beautiful place. This will be her sixth surgery and I wish she didn’t need it, but I hope it is her last! I have taken a step of faith and put in a deposit for the surgery. Today is my birthday and I know there are so many people who love and support us. It is hard for me to share our struggles and ask for help but often in life, we often must let go of our ego in order to live and serve in a greater way. If there is any part of our story that touched you or if you would like to help support us in making this happen for her so she can have a good cry, rub her eyes, play ballgames, and feel more confident in her beauty, please donate what you can to our travel and surgery fund and consider sharing with others who you think might want to help or benefit from knowing about ptosis, Dr. Medel, or connective tissue disorders. I would love to share what we have learned with anyone who could benefit. This has been a journey with some dark times, but there is always beauty and blessing to be found. I couldn’t imagine a more beautiful place to “have to” travel for surgery than Malaga on the Costa del Sol in Spain! We are not looking forward to another surgery, but I know it will be a wonderful place to heal and recover. Please help us make this possible and I promise to keep you up to date and take you on this journey with us. In gratitude, Liza