In March of 1996, I gave birth to what seemed to be healthy fraternal twins. We named them Tomas and Natalia. It wasn't long before we learned that "Tali" was going to have many health problems and disabilities. From the beginning, however, the miracles that have shown us God's love for this special little child have been abundant.
Tommy and Tali were delivered by c-section, so our hospital stay was set to be three days. However, when the third day came, I developed such a severe pain at the incision site that I couldn't even stand, so they decided to keep us an extra day. The next day I woke up with that unusual pain completely gone. After lunch I was holding the twins as the nurse readied the paperwork for our discharge. I looked down at my little babies and noted that Tali was "a funny color." The nurse scooped her up and quickly headed out of the room. I had not realized that Tali had stopped breathing. The nurse gave her mouth to mouth resuscitation on the way down the hall to the nursery. Tali stopped breathing and was resuscitated four times that day as they monitored her closely and performed a variety of tests. The tests showed nothing and she seemed to be doing well after that, so on the seventh day we went home with a portable monitor.
It was clear to us that, even though we were not yet aware of Tali's diagnosis, God had a special plan for her. If we had left the hospital on schedule, it is very likely that Tali would not have made it to her fifth day of life. That pain that kept us in the hospital, very likely saved her life. We never got a medical explanation for the pain, but we view it as a gift from God.
By three months of age, I was beginning to see a dramatic difference between the twins' growth and development. The pediatrician agreed that we should have some further tests done. We went to the local University Hospital. Three months later, our fears were confirmed. This quick diagnosis was itself another miracle. She was the 11 th case diagnosed in the United States of a rare metabolic disorder called Congenital Disorder of Glycosilation (CDG). We were told that there was about a 25% chance that she would not live one year, and if she did live she would face a life of severe disabilities and health problems. The reason that she seemed healthy at birth was because my body was "correcting the problem" while she was in the womb. When she was born her body went into a kind of shock, and that is why she stopped breathing at four days old.
Of course, this news was heartbreaking for us. We had to say goodbye to all the hopes and dreams we had for her life. It didn't take long for us to realize, however, that although her life would be one of suffering and struggle, it would also be one of deep joy and great love, and most importantly, she would never commit any sin. She would live a life very close to God and we would never have to fear that she may not go to heaven.
As she continues to grow and develop (at her own pace), we continue to be amazed at the way she affects the lives of so many people. First of all, the example of joy amid suffering that she shows us every day is inspiring for our family and for so many people who have lots or little contact with her. She also sets an amazing example of perseverance. She can't walk without a great deal of support and some degree of pain, yet she gets up on her feet everyday, if only to take a few aided steps, and she gives it all she's got. She also cannot speak more than a few labored sounds, yet she is determined to communicate. When she has something to say, she will use several different strategies to make herself understood. Some of the best moments with her are when she is trying and trying to communicate, and finally we understand her, and she gives an adorable little nod of the head in combination with a sweet little, high pitched, "yeah." There is no sweeter sound on earth.
I could tell a thousand different stories of how she has touched people's lives, but I will just share two. A few years ago, Tali was in a halo to stabilize her neck after one of her many brushes with death. She had had surgery for a severe spinal compression on her C-1 vertebrae. She looked a bit "Frankensteinish" with the stabilizing screws drilled right into her skull. One Sunday at church, she was giving the family behind us her usual sweet smiles. We talked to them briefly afterwards. A few days later, we received a letter from a young girl in that family. She was probably 11 or 12 years old. She was writing to Tali to tell her that having met Tali had changed her life. She said that she now realized that happiness does not come from anything we get or have in this life, but from inside of us. Seeing that Tali was so happy, even though she couldn't walk or talk and was suffering a great deal, touched her so deeply that she would never see life the same way again.
Another time, a gentleman who we see quite regularly came up to us on a playground and said that he just wanted to share with us what an inspiration Tali has been to him. He said that when he sees her trying so hard to do even the simplest things and how she never gives up and always has a smile on her face; it gives him more courage to face the problems that he has in his life.
Of course we would never wish these problems on anyone, but God, in his infinite wisdom, has given us such a treasure in this little angel. We are certain that our lives are far richer for having her in them. One January, several years ago, we were quietly praying in a pro-life prayer vigil when a college age woman came by and blurted out to her friend,"Look at that little retarded girl, she should have been aborted." Her friend, looking rather surprised said, "Oh, no, she's so cute." She may have thought she was cute, but she very likely had absolutely no idea what infinite value this little life has. Not only will she spend eternity loving and praising God, but she is going to drag so many other souls with her that may have otherwise been lost. When Tali gets to heaven, she will be jumping for joy in the knowledge of how many poor, confused souls that her love, example and prayers have helped, not the least of which is me, her mother.
Back to Rare Metabolic Disorder Stories
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.