Good morning and happy “Mother’s Day.” My name is Lisa Mang, and I’m honored to share with you my experience of being a mother. I have two beautiful little girls: Courtney, who is 5, and Carly, who is 3. I was chosen this year because my story is different than most in that my younger daughter Carly is a child with special needs. When I became a mother almost 6 years ago, I was given many life lessons. My relationship with Courtney taught me lessons in confidence, self-esteem, and most importantly unconditional love. Older mothers often remind us to enjoy our children while they are young. I’ve tried my best to follow that advice. Courtney and I were involved in every mommy and me class and play group we could fit in our schedule. We made lots of great friends and really enjoyed our time together. I was so proud to be her mother, and I’m even more proud today. She has grown to be a beautiful, loving little girl, and I’m always grateful for her and the blessings she brings. When our second daughter, Carly, came along, I received different lessons and blessings. Although I had a normal pregnancy, when Carly was born, she wasn’t breathing and had to be taken immediately to the neonatal intensive care unit. We later learned that she had a rare heart defect, where the tricuspid valve was malformed, and her heart was unable to push the blood to the lungs. Carly was put on a life support machine to by-pass her heart and lungs, and the doctors could not tell us if she would live. Carly’s 61/2-week stay in the hospital was the most terrifying time of my life. Waking up every morning and going to bed every night with the same thought, “Will my baby survive?” To see her everyday with all the tubes and wires, swollen and discolored from her organs failing, was very difficult. The hardest part was not being able to pick her up and hold her when she cried. Looking back now, it’s hard to believe all we went through. We watched Gods miracles daily as Carly went from a tiny new baby with no heart, lung, kidney, or liver function to a beautiful, pink, chubby cheeked baby in six weeks. Although she would be leaving the hospital with oxygen, a heart monitor, a feeding tube in her stomach, and a 6 month return date for heart surgery, we finally felt the worst was behind us and that Carly was coming home and would be fine. Before leaving the hospital, the doctors were able to run the tests that confirmed the fear they had from the beginning. I still remember the devastation as the doctor explained to my husband and I that Carly had suffered a severe brain injury as a result of her lack of oxygen. Although he could not predict the future, he felt Carly would have difficulty using her limbs for walking and other motor skills. He felt she would not lead a normal childhood and would require special schooling. Carly had cerebral palsy. Of course, my husband and I were devastated. I couldn’t imagine ever being happy again. I was convinced that everyday seeing my daughter unable to do the things other kids could do would cause me tremendous pain that would last forever. That first year was very difficult. However, time does heal all pain as they say and boy am I grateful. I didn’t want my life to be sad everyday. And day by day the sadness was replaced with joy again. To help explain what this experience was like I would like to read “Welcome To Holland” written by Emily Pearl Kingsley. WELCOME TO HOLLAND By Emily Perl Kingsley. I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower- paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... And you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. Carly is three now. At a year and a half, we began a program directed by the Institute for the Achievement of Human Potential in Philadelphia, Pennsylvania. The Institute creates an elaborate, dedicated home program to be conducted by the family. We work with Carly 8-10 hours a day on things like crawling, eating, talking, standing, and using her left arm. We even do a reading program to help her vision and increase her understanding of the world. All these things come naturally for healthy children, but for some children with brain injuries, these skills must be taught over and over. “Frequency, intensity, and duration” is the motto of the Institute, and it has definitely become our motto as we do our daily therapies with Carly. Before starting this program, we had relied entirely on the doctors and therapists to tell us what to do with Carly. We lost our confidence in being Carly’s parents and knowing what was best for her. This program gave us back our confidence and put us in charge of Carly’s development just like we were with Courtney. We take Carly back to the Institute every 6 months where they evaluate her progress and give us new things to work on. We are so grateful for all of Carly’s progress so far. She currently crawls 300 meters a day. It’s not a perfect crawl, but it allows her to get from one place to another. We hope that with practice, it will become perfect and lead her to walk. Recently, she started consistently eating food by mouth. At this point, finally, it’s looking like removing the feeding tube is a real possibility. We look forward to all the new things she will achieve in the future regardless of how long it takes. You may be tempted to think how sad, but I can honestly tell you I feel no sadness at all. All of this was very sad and very scary at first but as time has gone on I am able to see a lot more joy and love that has come from this experience. I was able to rid myself of some fear and sadness about 6 months ago. I was reading an article about children with special needs and the author wrote “When we believe that something bad has happened to our child and to us we lose touch with our appreciation for our child and our delight in their presence.” “Delight in their presence” Those words went straight to my heart and when I tried to read them back to my husband I could barely speak through the tears. We loved Carly. We worked with her every day, but it was like a gray cloud hung over us. I don’t think I even realized it was there until reading that. We believed we were making the best of a bad situation. But the fact, we viewed our situation as bad, blocked us from fully enjoying our daughter. I wanted to delight in my second daughter’s presence just like I did with my first daughter. Really what was the difference, we don’t love our children because they walk or talk. Sometimes, we love them inspite of the fact that they walk and talk. I realized that my daughter was no less a gift from God than any child, and she deserved to be cherished in every way. She should not be thought of something bad or sad for what she is not, but she should be celebrated for all that she is. When my husband and I focus on our lives one day at a time and resist the temptation to try to predict what the future will bring. We see Carly crawl to us to be picked up, smile, laugh, kiss, hug, and say mama and dada. We realize our lives are not that different from anyone else. I used to really have a hard time believing people when they would say that some tragic event in their lives was a blessing. I thought to myself, “Well, what else are they going to say.” Of course, they would not choose that life if they had a choice. But when I really think about the person I am today compared to 3 years ago and when I think of the marriage I have today compared to 3 years ago and when I think about the lesson in love that my 5-year-old daughter is getting everyday. The peace and joy that I feel due to my relationship with God. I am thoroughly convinced these things would not have happened had it not been for Carly. I am truly and totally grateful. It’s been said that true joy comes not from ease or riches or praise from people, but from doing something worthwhile. This has certainly been true for me. Becoming a mother and having the opportunity to help my daughter in such a profound way has been the most worthwhile thing I have ever done and it brings me tremendous joy everyday. Our family has become a great team working together. It is not always easy. But seeing all Carly’s progress makes it all worth while. We all feel grateful to be a part of a family that has had the opportunity to show each other that if at anytime you need something you know your family will do what ever it takes to help. When we started this program 2 years ago, we had to ask for volunteers to help us with a part of the program that required 3 people 4 hours a day. This was an overwhelming thought because we were not the type of people to ask anyone for anything. We were amazed at how many people were willing to help us. These people consisted of relatives, friends, neighbors, and Mike’s co-workers. Our friends and neighbors were the first volunteers we had and they helped support us in many ways while we were getting started. The church provided another source of help through the incredible new friends I had just met during a MOMs group. When we needed therapy help on the weekends, St. Stephen posted the need in the bulletin, mentioned it at mass, and within one week we had several volunteers, who still work with us each Saturday. I also like to point out Mike’s co-workers include 7 computer engineers who take turns everyday coming to our house after work to help with Carly. Their love and dedication for Carly has been an amazing thing to see. In addition, people, we had never met, would hear about our situation and show up at our front door. So as you can see we have had an incredible opportunity to see the better side of life. My life has been enriched by each of these people in some way. I consider myself lucky to know them. These people have given their time, their energy, but mostly their love to help our little girl. 14 of Carlys angels are members of this church. For those of you who are here today, on behalf of my whole family, I would like to thank you from the bottom of our hearts for all that you do and have done. Without all of you, we would not be where we are today. I hope you truly realize how important you have been to us. I would also like to say a special thank you to my husband, who I admire and learn from daily. By simply saying, “How did I get so lucky?” In closing, I would like to wish all of you a wonderful Mothers Day, and urge you to question any beliefs that keep you from fully enjoying your loved ones. Thank you.