We really do a lot of fun things, even just going for walks outside with Sarah, Molly, and my dog. Literally, we listen to the leaves or the flowers. We really love just telling silly stories and singing outside. It’s the best part of our day. So we’ve really learned because of Sarah to appreciate each other as a family, and we wouldn’t be doing all these things together if it weren’t for Sarah. We would probably be like everybody else; all crazy in our activities and not take time to be together. I really feel like she has really taught us some life long lessons about enjoying the people that you love and spending time with them.
Mother
A matter of persepctive
You can look at it two ways. We are unfortunate to be the ones at the front of the line, cause we have to make everything happen and fight so hard for it. But at the same time, when we have that and we’ve accomplished it, we are proud because we have made things so much better for everyone else.
Mother
Our strong bond
Materialistic things became so unimportant. We have such a strong bond and have grown so much together through this whole process. Other parents don’t understand how close we are and how close we’ve been. As a team, even as an infant and as a toddler, we had to get through all of that together. There was no doubt that I had to really communicate with Madison. I had to communicate with Madison on a level that other parents didn’t communicate with their kids. You know, they are busy doing the baby thing and talking to them and saying “Ok honey”. And I’d be like, “Madison, listen. This is what we need to do” She understood that I had to speak to her like a young adult in order to get what we needed accomplished. I think it put us on a totally different level spiritually together and on another level of respect, in a lot of ways. I just tell her if we can get through this, other things in life are going be easy to you. Kids will be struggling with other things and these things will be a piece of cake for you.
Mother
It’s been an honor to be her father
I can’t imagine a life without Emily and I would not trade this life for any other. I would not trade that relationship with Emily for any other. I would not want her any other way and I can’t imagine a relationship closer or more full of love than the one that she and I have. I can’t imagine being more devoted. So, it’s been a wonderful relationship; I’ve learned incredible lessons from Emily. I step back in awe all the time at what she is able to do. I often forget that I’m her parent, her father, and I look at her more as a witness or a bystander. I can’t describe the level of awe and respect I have for how she goes through life. It’s been an honor to be her father, it’s been a great joy, and it’s been a great heartache. I’ve grown a great deal myself in this process. I’ve appreciated the importance of taking care of myself, of more of play, humor, laughter and relationships. Emily is willing to engage and encounter everything that comes her way, regardless of how she’s feeling, and I’ve never encountered anybody like that. She encourages me to do the same thing. So I can’t say I have the same level of courage as her, but she brings joy to my heart and she brings me closer to my potential.
Father
This is the kid they said would never walk and talk and would only have a 10% chance of a normal life. But when you play music, he becomes a whole different person and that’s rewarding. That’s like my biggest joy, you know? That brings us so much closer together because I see him happy. I see him smiling. I see him raising his hands on his own. Even when I see Darius smile when he has a tube down his throat, I know that’s something good. It’s stuff like that that really gives you joy and happiness. Sometimes we look for the big picture, but we have to start off small…
Mother
Not taking things for granted
I think we all take for granted the smallest, simplest things that we all do every day, and it certainly has brought that into focus. It was a monumental event when Ryan learned to tie his shoes, which was much later than the other kids, so we were so happy and excited.
Mother
On the radio
Every day she does something that floors me. This past week, she was a part of the Mix 98.5 telethon. It took a very long time, but we asked Katie multiple questions and she came up with a little speech about what Children’s Hospital means to her. And she heard her speech on the radio Friday night. And when I came home at 11 o’clock at night, she’s lying in bed with the biggest smile on her face because she had heard herself on the radio.
Mother
A humbling experience
The child we thought/hoped/expected we would have is quite different. We have constantly had to readjust out hopes and dreams. It has been a truly difficult and humbling experience. It has forced us to enjoy the small miracles of daily life that other families take for granted. And I suppose in this way, it is also really an advantage to be faced with this challenge.
Mother