Bella's Gift by Rick Santorum Read Free Book Online

have fewer physical and mental issues and thus have a much better chance of survival. We had spoken with the geneticist, and he was optimistic that if she did have T18, it would be the less serious, mosaic condition.
    That was our prayer, and Karen’s heart was holding on to hope. Bella was sailing along, even though she weighed less than four pounds, was five weeks premature, and was unable to eat much by mouth. Even for a normal baby she was thriving, much less for a baby with a fatal condition. In Karen’s heart the indicators were a variation of the norm and nothing more; Bella was going to surprise everyone and either not have T18 or have mosaic T18.
    In the days while waiting for the test results, we read all we could find about this condition. Karen’s father had been a brilliant medical geneticist, so this was very much in her wheelhouse. She knew the gravity of the diagnosis and was hoping and praying for a miracle.
    “I am sorry, but Bella has full Trisomy 18.” The doctor’s words ripped like a bullet into our hearts.
    “Are you sure it is full . . . full Trisomy 18?” I asked.
    While the doctor provided what seemed to be a million caveats, the answer came back to me as yes. Our little Bella was going to die.
    Even though I’d suspected the worst, I didn’t really have time to digest it all. Karen needed me. I had to comfort andencourage, even when there didn’t seem to be any hope. The coming to terms with it came later, when I had to inform our family and friends that, in spite of their prayers, another child was going to be taken from us. We just didn’t know when or how. The calls were cathartic, even though I had to explain the details over and over again, but my sole focus was to love and serve my family. Someone had to rise above and hold us together.
    What helped me the most during this time was my faith and the thought of my son Gabriel. I thought of the horror of losing him and yet the blessing he still is to our family and me, and the impact his life has had on others.

    Of the 10 percent of T18 kids who survive birth, a very high percentage die in the first few weeks, and the doctors were sending Bella home on hospice care. We had to fight for appropriate life-sustaining care while accepting that she would not live long. I decided to deal with that reality by accepting and being at peace with God’s will for Bella.
    I had some tough moments, but I was the rock for the family. Sometimes too much so. Karen would get upset that I wasn’t going through the pain and anxiety in the same way she was. I learned quickly that explaining how I was holding it together was not a good idea. My task was to affirm her way of dealing with the grief, while also loving her and helping her recover.
    After ten days in the NICU, Bella was on her way home. It was a joyful and anxious day. It had been six years since we had a baby and we had thought we were out of the babybusiness, so we had given away all our baby stuff. In spite of the diagnosis, we decided to proceed with setting up a cute nursery. We had a bassinet set up for her, but Karen insisted on buying a crib for the day when Bella outgrew the bassinet.
    Ever the practical guy, I wasn’t always sensitive to the emotions in the house. Like the day Elizabeth and I were unpacking the crib. I told her to save the box that Bella’s crib mattress had come in. She looked at me, confused, and asked why.
    “Well, we just don’t know how long Bella is going to be here.”
    I wish I could take those words back, because I’ll never forget the way she looked at me, as though I had not only hurt her but condemned Bella myself. My feisty Lizzie grabbed the box and tore it up as she started to cry. “You have to believe in her!” she said. “You have to have faith! If you don’t, then who will?”
    Looking at the pile of cardboard, I felt ashamed. I hugged her and we both cried. I knew she was right, but I just didn’t know how I was going to believe that