Room 5123 honors those whose lives are full of doctor’s appointments and hospital wards.
Room 5123 Page Contents
Chris & Becca
“I don’t feel like our whole life has been hard. I think we have had hard times but as long as Becca was doing well, I think we were reasonably good. And normal. Whatever that means. But I think when things aren’t good it’s really hard. I think that its hard to have people understand how hard it is unless they are living that same life or a similar life. I have found, at this point, that mothers who have reached out to me who have lost their children, they help me. And that has been good. Even through their pain, they have helped me.
Becca was adopted and I know one thing, we would say yes again all over in a heartbeat because of everything and how she has changed me and us and who she was and all that we learned and have become. Because of her. We would do it all again in a heartbeat. I think all the moms I know who are in the middle of this struggle, who won or lost the struggle, feel the same way. They would do it again.”
“There is a loneliness in chronic illness. It’s hard to know that there is a world going on around you, and you’re not a part of it. I know there are great organizations like Make-A-Wish that make big gestures to help create memories and experiences, which is valuable. I think it’s the day-to-day stuff that I’m referring to – there is a loneliness in that. It’s important for family members to know that they should really make an extra effort to not lose touch. Some say it’s hard for them or they don’t know what to say. This time isn’t about you. Just show up. Be there. Be a text. Be a call. Be as visit. Just be. Now that my son is gone, I of course miss having him in my life; I miss having him in my routine, in my day and my night. I was his voice. I miss his sweaty hands. I miss his beautiful, soft hair. I miss his big eyes and big heart. I miss you, Hamza.”
Sofia Saeeda & Hamza
“I’ve never let cystic fibrosis define me. I’ve never let it take control. I’ve never thought ,“Oh, this is going to hold me back.” For me, it’ all about perception. If my parents told me you can’t do this because of this I would fall into that kind of mindset. If I think I can do it I’m going to do it. It’s always in my mind that I have this disease but it’s never something that I see as going to get in the way of what I do. I see it as something that I have to almost conquer. Like a task I have to conquer.”
“He was about 2 1/2 when he was diagnosed. And I was around seven I’d say. I was confused. I didn’t really understand what it meant. I just thought he was quiet. I didn’t really understand the full scope of it, but then when I got older, it made me sad just because I realized that things would be more difficult for him. With my brother, I know that because I am the older sibling he is my responsibility, but I don’t have a problem with that and I’m happy to in a way, think of him as my own. I’ve never felt like it’s a burden on me. I think people don’t know that a lot of times children who have autism usually become really close to their siblings. I think it just doesn’t occur to people that usually having an autistic member of the family means that you are close to one another. Because my brother and I are really close with each other to the point where we get separation anxiety. There is more responsibility for siblings of people who have autism but it’s a responsibility that we choose. It’s not like a responsibility that’s forced on us.”