Wednesday, May 1, 2013

Thirty-one years and one month.

That is all I had with Amy. It seems like a blink of the eye.  Amy was born when I was 23 years old. We brought her home and life was perfect. She had a big sister that was 2 years old.  I learned to smock and made matching dresses and bonnets. My girls were everything to me. My husband had started his own business and he worked 14-16 hour days. So our girls were my life. 
Waiting for Christmas morning.
 And then Amy started having "problems."  She couldn't pull herself up to stand, but could crawl and then walk if we put her on her feet.  She started to say a few words and then stopped making sounds.  She would cry and cry and not be consoled. She started spitting and constantly chewing on her hands and holding them together. I started searching everywhere for the answers, Hershey, State College, National Institutes of Health. We were told Amy would be severely mentally handicapped, we were told she was going to die before she was 7, we were told they didn't know what was wrong. I kept searching and finally, finally when Amy was 4 years old, Massachusetts General knew the answer.  They told us that Amy had Rett Syndrome.
In our search for answers with Amy our marriage suffered and then I became pregnant with our third little girl and our marriage problems got worse. I was having a hard time being mama to a 7 year old, a 5 year old with special needs, and a toddler and striving to help my husband with our business.  Our 7 year old became a second mama to Amy because I desperately needed her help.

Amy about age 6
 Then I reached out to God. I asked Him to take control of my life, to forgive me for my past failures in our marriage, to guide me because I wanted to live for Him now.  Our lives slowly changed.  Our family was made complete with the birth of a little boy when Amy was 7.  Now our lives were filled with  learning. Learning about God and His love,depending on God to be the leader of our marriage and our family. We started homeschooling the youngest two. Then our oldest started school at home in 7th grade.  Amy was surrounded with love.
Amy on my lap at age 8

Rett Syndrome Information

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