Ben was our fifth baby. We had been married 12 years, had three beautiful and healthy daughters (and one son that was stillborn on his due date.) When we were first married we had both wanted to have four kids, but after losing Timothy and carrying two more babies after that loss, I came to the conclusion that I couldn’t handle another pregnancy. I LOVED being pregnant and LOVED my children, but I just couldn’t kick that constant worry of losing another child.

When our youngest daughter was about a year old, my husband and I began investigating the medical options to ensure we were finished having babies…and the vasectomy came out as the winner! ;-) We went as far as being referred to a doctor to perform the procedure when I found out I was pregnant! Normally this would be a very joyous occasion, but I had convinced myself that I was finished having children—I had a very difficult time accepting the fact that we were having another child. I cried when I read the positive pregnancy test and my feelings of sadness continued for the next 4-5 months...but once I felt his movements I began to accept that this child was just "meant to be."

Ben was conceived when I was 31. (and—this is kind of strange—but ever since I was very young, I had made up my mind that I didn’t want to have any children after I turned 30—as if I somehow knew that there would be problems if I did).

Beyond the extra stress tests, kick-charts, and doctor’s visits I endured (because of our prior stillbirth), Ben’s pregnancy was pretty uneventful. I had a few instances when I felt his kicks were weaker than his siblings, but the kick-charts kept me pretty in-tune with his movements. Ben was induced on December 21, 1999. His actual due date was December 27, but the “inn was full” that year with many parents attempting to have the Millennium Baby; and since I had to be induced early anyway, we decided to do it before Christmas. After only 3-4 hours of labor, Benjamin Murel Warren made his day beau. My very first reaction was that something seemed “different.” His color seemed bad, he didn’t cry, he didn’t even curl into a ball like my girls did. He just lay contently silent in the shape of a tiny little “X” – his arms stretched out above his head and his legs outstretched. Since this was our “first” boy experience, my husband and I chalked it up as a “man thing”…a guy proud of who he is and not ashamed of anything. (we later learned this was from the low muscle tone). Ben was also VERY wrinkly. The OB/GYN stated that’s usually a sign that the baby is “past-due.” (we later thought that the due-date was probably mis-guessed--his due-date was based on his measurements…which were most likely smaller than a “typical” baby)

Then…almost eerily…the nurse swooped Ben up and took him away. My husband followed with the video-camera, and he returned a few minutes later. They sent him back with a scribbled note that read “6lbs 7ozs” which made him our smallest baby. I was surprised since he was my 5th baby and he was a boy—I expected him to be bigger. Then my husband told me the nurse was trying to feed Ben a bottle! I was upset as I wanted to breastfeed. He went to get the nurse and that’s when she said they thought Ben swallowed a bit of meconium during delivery and were trying to remedy that problem. This sounded extremely odd to me as...the birth was VERY quick, and no one mentioned that possibility at the time... With each passing moment and each bit of news...I just had a feeling something was wrong.

They brought Ben to us about an hour later. He was SOOOO tiny! He didn’t look like any of us, he slept constantly, and he wouldn’t nurse at all. Our family and friends came to visit and everyone just remarked about his tiny features and asked us who we thought he looked like? Later in the day the nurse came in to help my room-mate with breast-feeding. Her daughter was having trouble latching on, and when they were finished I asked for the nurse's help with breastfeeding Ben. She only responded that Ben seemed sleepy and probably needed his rest after such a long and difficult delivery. (my labor was 3-1/2 hours and the nurse “caught” him because he came before the doctor could run into the room). It wasn’t until my entire family and my husband left that another nurse came into the room and asked to take Ben to the nursery because she felt his temperature was a bit low. They took him and didn’t return. I went to check out the situation, and the nurse was in the nursery feeding Ben once again with a bottle. I walked back and asked what was going on, and she told me his sugar-level was low and they needed to give him the bottle. I explained to her how I had tried to feed him all day with no assistance from the nurses, and she suggested they just let him stay in the nursery for the evening. I was beginning to feel as if they thought I wasn’t capable of caring for my own child--or there was something wrong that they weren't telling me...

The next morning the pediatrician came in and told me that they thought Ben might have some type of infection that was causing the low body temp, low heart-rate and low oxygen level...and that they may need to transfer him to a children’s hospital in St. Louis (about 45 minutes away). I was totally fine with that...and then he dropped the bomb. He told me they also saw indications that lead them to believe that Ben might have Down Syndrome. I was alone. Ben was in the nursery, my husband was at our daughters’ school Christmas Parties…it was just me and the doctor. I thought I was going to be sick, the room started to spin, I felt like I was having an “out of body” experience VERY similar to how I felt when the OB/GYN told us our son had died inside me just seven years before…

The morning was a blur (literally…I was crying so hard I could barely see), but my dad stopped by and spent some time with me while I frantically tried to find my husband before Ben was transferred to St. Louis. I got in touch with my mom and she said she would find Bud and send him to the hospital. She drove to school and found him in the parking lot on his way into the building. She came up to him and told him he needed to get to the hospital immediately...that there was a problem with the baby. My husband thought the worst and rushed to the hospital. When he got there the transfer crew was putting Ben into an incubator to transport him by ambulance. I was in the hall-way peering through the window at him when Bud ran down the hall to be with me. He asked what was wrong. I told him about the possible infection and then could barely get the words out..."Down Syndrome." He was silent for a minute and then said..."is that it?” He told me that he thought Ben was dying...he was so relieved to hear that it was JUST Down Syndrome.

Ben was transferred and we were told to wait a few hours before coming up so they could get things settled. When we got there they were trying to take a blood sample...from Ben’s SCALP! It was so horrid that Bud took me out of the room. Ben was in the NICU for 7 days. He missed his first Christmas home with our family, but we all came up to visit him DAILY, and the girls all got to hold him. Those seven days were SO LONG, but it helped me to reach a place of comfort with the DS and a terribile yearning to have my baby home with me.

The first two days we were questioning the doctor’s ability to diagnose the DS based soley on Ben’s physical features, but by the time the test results were confirmed on Christmas Eve...we knew...and we were okay with it. The thing we wanted most of all was for Ben to come home with us and to be with his family. We took Ben home on December 27 (his due date) in a beautiful flurry of snow. I cried with happiness all the way home.

Ben began therapy at 6 weeks, had surgery for a diaphragmatic hernia at 10 months, multiple procedures and biopsies for Hirschsprung’s Disease, and finally an official diagnosis and surgery to remove 4” of his colon at 2-1/2 years old.

Throughout his first few years I can look back and be thankful that Ben has been as healthy as he has...and although he was the only one of our five children not to be completely “planned” ...he has changed our lives in a way that we could never have imagined. He has taught us thankfulness, hope, courage, sincerity and promise...and he has helped us to reach a level of understanding and love that we could have never felt without his presence in our lives. I’ve been emotionally touched by many people throughout this journey, and I fully believe that these people were destined to be a part of my life as much as Ben was.

I cannot imagine a luckier mom...I truly feel blessed that I have been allowed to raise my four children and be such a huge part of their lives. My life experiences have allowed me to feel emotions to the extreme of many realms...but the greatest of these is love...