Mary and I are just so grateful, so thankful for so many things right now. This has been an overwhelming week in so many ways. People have been so kind, but I want to reflect on Julie's life - not just the last week - and I want to give thanks.
I don't want to sound too much like Hillary when I say this, but we didn't do it by ourselves.
Julie had the best doctors. I will never forget a conversation, more than eighteen years ago, when Julie was facing the first of her seven operations. She was seven days old at the time. I won't tell you how old we were; we were little kids I think. And we were really frightened, and we didn't know what was going to happen. And as the doctor was telling us what she was going to do, Mary asked the inevitable question: "Is Julie going to survive this?" And Dr. Hammock reached out and touched Mary's arm and said; "Honey" -she called everybody Honey -"Honey, we're going to do everything we can to see that Julie not only lives, but lives well." So I guess it's our definition of "lives well." To my colleagues who were with me in a workshop earlier in the summer: we had a little presentation about a trip to Italy, and I want to tell you, I was sitting in the middle of the room when the title was announced--the title was "Welcome to Holland," actually and, had I been sitting in the back, near a door, I'd a been gone. Because I didn't know if I was going to breakdown right there. That story has been with our family for so long - Mary had a tattered old copy that we pull out, that we read quite frequently. I won't read you the whole story, but I'll tell you the gist of it. Emily Pearl Kingsley compares having a baby to taking a trip. And in this case, imagine you are making a trip to Italy and you're really excited about the sites you'd see, the culture you'd enjoy. You'd find all the guide books you could find; you'd learn a little bit of the language. You'd just look forward to that trip so much. You'd look forward to seeing Venice, Rome, St. Peter's Square, and when you take the trip and the plane lands, and the stewardess says; "Welcome to Holland". And you say, "No, there's been a big mistake here. I'm going to Italy." She says, "No, your flight has been changed. You're in Holland and you're going to stay here." She says, "But that's okay, because in Holland, we have windmills, and in Holland we have beautiful tulips, and in Holland, we even have Rembrandts." So I think Dr. Hammock was right, Julie lived well. Because with Julie, we enjoyed windmills, and with Julie, we saw beautiful tulips and with Julie, we even saw Rembrandts.
Julie had the best teachers and the best school. She's been enrolled in the school system since she was six months old. She had a teacher, physical therapist, occupational therapist, vision specialist, all came to the house. And then when she was old enough to go to school, she had one of the finest teachers, who had already written a book on battery-operated switches to stimulate the kids with disabilities, working on her second. In fact, Julie's picture is in her second book. For the last thirteen years, Julie has been at Duckworth. I want to make a statement about Duckworth, and I want to be careful not to exaggerate, but James E. Duckworth School is the best school on the planet. Last night, person after person, from Duckworth, staff members, teachers, principal, and it got to a point where I said, "Well these people are just being Duckworth. You know, this is Duckworth being Duckworth." And I hope you had a chance to see the book, the memorial that was created for her.
Julie had the best church, the best community. You're getting a really good show today. As we do with all of our children, we wanted Julie to experience our faith. And through the spiritual guidance we received from the priests you see here today, Julie did just that. She was accepted; she was loved. That's why we wanted Julie here for the wake - this was home. We knew she'd be comfortable here. When the casket was brought in yesterday, I wanted to say, "No, she doesn't sit there; she sits back there by the window."
Julie had the best hospice. As you know, Mary is a certified hospice nurse, and she knew what she wanted. And we sort of interviewed different programs. Well, the interview had one question: do you have a pediatric unit? So frequently, or at least three times, the answer was no. Of course those were our "in network" plans we were supposed to be using. Then we discovered Jewish Community Hospice. We had been working on this for three days, calling the insurance company, calling different hospices, calling our pediatrician, and we finally got a decision at four-thirty on Friday afternoon - we wanted Jewish Community Hospice. They were there. They came that evening. There were there until nine-thirty at night. When they left, Mary shut the door and said, "Now that's what hospice is supposed to be like."
Julie had the best Mom. It was Mom who demanded to have the best doctors, the best teachers, the best church, the best hospice. I guess she didn't demand to have the best family, we just sorta lucked out on that one. But, I have part of an article I want to share with you from that famous theologian, Erma Bombeck. Fr. Berry, it's okay, Father, it's okay. The title is "Only Special Women Get Special Children."
- Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly one hundred thousand women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint, Matthew."
"Forrest, Marjorie; daughter. Patron saint, Cecilia ."
"Rutledge, Carrie; twins. Patron saint, ...give her Gerard. He's used to profanity."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to
give her has her own world. She has to make her live in her world and that's not going to be easy."
Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied.
She will never take for granted a 'spoken word'". She will never consider a step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone.
I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in midair.
God smiles, "A mirror will suffice."
Julie touched the world. More than touch it, she changed the world; she made this a better place. The world will be more sensitive, more caring, more loving and have more awareness of all of God's children. What more could two parents ask of their child? God bless you, Julie, and God bless everyone who helped her leave her mark on the world.