'She began to smile at us' – living with my profoundly disabled child

Ailsa When born, it quickly became apparent that all was not well. Five years later, Saira Shah remembers what it's like to be told that her son will never know. But she enjoys the love that has brought her daughter

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my baby for the first time after an emergency Caesarean section, I had a moment of clarity. Her face was bad - was wobbly and his eyes were of different sizes. Then, a switch flipped in my head - and I found myself face the most pleasant and best. The idea filled me, obvious and overwhelming: I am a mother

I was afraid that I could not be sure of the mother. Should not be very good with babies. I thought of it as a seed that feeds. Some layers and will soon on his feet and my partner Scott and I had a lot of fun helping them discover the wonderful adventure that is the world.

We had a wonderful day together at the hospital. The doctor came and said Ailsa. "A1 - perfect" I tried to make him eat. Again and again gaping mouth, shark, and it would make a comic stab in my chest. But something kept going wrong, I would snake his body back, away from me, and then his warm body curled up on my chest again. I did not like: I had read enough about breastfeeding mothers and to know that you do not need to worry too much, do not overreact

As we fell asleep, her and me, skin to skin, in my narrow hospital bed, I thought I might actually be good at it. A nurse woke us up. "My God, Mom, get a body suit for the baby - it'll catch your death." I tried, groggy to protest against Ailsa was not cold - if something was too hot - but it was carried Scott and valiantly struggling against his bonds

could then see the fist trembling. Scott shouted, "She had a crisis!"

The following week, the hospital is a whirlwind of horrible memories. There was no evidence of intrusion and global - as if all the doctors at the hospital wanted to get into the act. But nobody says anything until we were sure.

The powerful attraction of motherhood Ailsa pulled me by telling me that everything would be fine. A doctor blurted it is sighted -. And immediately switch flipped in my head, and the best team in the world has become a darling girl with glasses huge eccentric visionary looking over a school photo

As slowly realized that I would have problems, I prayed that their disability is only physical. At the end of the week, we finally told the truth: Ailsa was born with what they called a "shopping list" of brain abnormalities. They were so devastating ("diffuse, comprehensive and thorough" in medical jargon and) that large parts of his brain had simply failed to form.

would profoundly mentally and physically disabled. She would never walk or talk, you never know what we are. As she grew older, she may require ventilation and feeding tube, and certainly need cranes to lift. "She can do it in a wheelchair," said one consultant, "but probably only found in the bed."

switch flipped in my head and this time I saw a body lying on a bed tired, eyes fixed on the ceiling without seeing a feeding tube in the stomach, an oxygen bottle Meanwhile, breathing through a fan. I was a complete failure as a mother. I made a promise to my daughter house to protect her, and now I was totally unable to cope. Scott and I learned that some parents of severely disabled children in the hospital so that they are placed in foster care.

Care of

seemed impossible. Internet trawl found horror stories of parents who have their children in the air every 20 minutes of team work day and night, people who care program punishment leaves no time or energy for other activities. For the rest of the family, other children, all pleasures, must take a back seat.

Doctors

were at the same time encourages us to your notes "no resuscitation" and try to convince him to take her home.

• deprived of sleep, almost started to hallucinate. I felt as if it was not a real baby, as if everyone around me knew it, and I oblige. Seeing her at the makeshift hospital for all types of tubes and monitors, and unable to help, made me sleep in a profound way. I felt that I could not afford to love completely. I began obsessed with what makes you a mother. If your child will never know who you are, you are still a mother? What if you put the baby in a family?
I'm ashamed of it now, but still wondering if our daughter with the huge brain abnormalities would be a complete human being. "She is brain-dead?" I asked my mother - and somehow I found it easier to buy into this. My family is proud of their lack of snobbery - but I started to recognize that we have an intellectual snobbery disguised

Amid this internal struggle, went to see Ailsa in his crib in the special care nursery. Without being able to roll or move apparently he had managed to curl up on the soft tissue chin on his feet rabbit. I broke down completely. I sat by her bed and cried and could not stop.

thought I must save this child. I have to take her home. If she can find comfort in your rabbit's feet is not worth my effort? Should not receive the comfort of my own? Do not you already missed day of your life? I dodged, slyly, guilty, and kissed the top of her head. It was wonderful. Vacuum your new baby smell, feel the softness of her hair. I started to kiss her again and again.

Scott and I decided to take her home and move forward with a plan - made before he was conceived -. Move to rural France
Find best price for : --Ailsa--