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Alyson and Alyssa
By their mother, Cindy Boudreaux, Special Needs Coordinator
The Twin to Twin Transfusion Syndrome Foundation

In the beginning, I always envisioned what life would be like if I was fortunate enough to have children with so many family and friends who experienced difficulty conceiving a child. I knew that if I was blessed to become a mother myself that I would love my child no matter what. Like most parents, I wished for the "perfect child" and wanted our growing family to be typical. One may call it being naive, but I never expected that anything other than that would occur.

Our life altering experience began in 1995, at 9 weeks into my pregnancy, when my husband and I discovered we were expecting twins. Immediately after learning our joyous news, we found out there were serious complications. At first, the doctors thought our twin babies were conjoined, but later learned I had Twin to Twin Transfusion Syndrome (TTTS). With the early detection and severity of my syndrome, our babies were given very little chance to survive. Several options, including clamping the cord of the smaller, sicker twin or terminating our pregnancy were among some of the options given to us. Knowing personally from my career as a certified and licensed pediatric occupational therapy assistant, that having a differently abled child would be life altering, my husband and I knew giving up on our babies to make our life "simple and ordinary" was not an option for us. With our decision immediately shared with the specialist, we continued our pregnancy attempting every option and procedure available to try to save our babies. After each failed attempt to save our precious children, we remained steadfast and faithful that what ever happened we would learn to accept and love our children despite the outcomes.

Despite our continuous efforts and those of our loving and compassionate doctor’s and nurses, our smaller twin daughter, Alyssa Marie, died in utero at 24 weeks gestation from congestive heart failure. Then, within a week, our surviving daughter, Alyson Jean, was diagnosed with the first of many serious brain injuries sustained when blood clots were passed from her demised twin to her. Our entire family was visibly shaken with the news and the unknowing of what the recent and distant future would hold for Alyson and life without her twin.

Finally at 27 weeks gestation, our twin daughters were delivered due to complications of Alyson's heart going into congestive heart failure. She was the first to be born by cesarean with her precious kitten like cry. Alyssa was delivered next, silent and motionless. My delivery of our precious girls is a moment in my life filled with such complex emotions, but a moment I will forever cherish.

Alyson spent nearly three months in the neonatal intensive care unit. She sustained numerous brain injuries before birth and from the "typical" trauma of being born 13 weeks premature. The doctors gave us little hope and eventually sent her home after feeling there was nothing they could provide her with in the hospital setting. "She most likely will not live to see her first birthday"; the doctor's told us. "If she does live, she won't be cognitive to know anything or anybody...She will be in a vegetative state."

As we left the hospital with our daughter, my husband and I truly did not know where our journey would lead us. On top of being first time parents, we had a child with a whole new and unique set of "rules and guidelines". As the months and years progressed we began to go through the somewhat typical stages of grieving the loss of a "normal child". In that time we also had to recognize that comments from others who stated "at least you have the one" were just their way of trying to be sympathetic.

Through the years, we have asked "why?” we compared our child to others; we felt "cheated", bitter, and glad all in one to have our daughter. The past few years have indeed been a challenge, but through my twin experience, I have been transformed into a better person. My husband and I try not to focus on the negative and somewhat frustrating side of raising a child with special needs (countless doctor and therapy appointments, numerous surgeries and illnesses, and barriers we have faced with specialized equipment ~wheelchairs, leg braces, standers~, and the knowledge that our child will forever be in diapers), but rather on the uniqueness and differences Alyson brings to our lives. We would love for Alyson to be like her typical developing peers and younger siblings, but we realize Alyson's life will not be typical. Our goal is to focus on her happiness and health; provide her with a loving, nurturing family; and strive to make her abilities the best we possibly can.

Our precious Alyson has endured so much from life just to be our mentor. I am often heard telling friends and family that "Without Alyson, I would not have been faced with my greatest rewards". Although our little girl is nonverbal, unable to eat by mouth, unable to sit unsupported, walk, or reach (she has severe spastic cerebral palsy, epilepsy, and many, many other diagnoses), she has the ability to "speak and touch" numerous people. I have been blessed that she has touched me in a profound way. I feel so incredibly honored to have been chosen as Alyson's mother. I will forever cherish and be so thankful for the lessons she has taught me and for facilitating the extraordinary friendships I have made along our journey together. As the years progress with our daughter I will reflect on what a friend of mine quoted from the late comedian Gilda Radner..."Life is about not knowing, having to change, taking a moment and making the best of it without knowing what's going to happen next."

specialneeds@tttsfoundation.org

Inside Special Needs

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