Today we honor Karen, an amazing mother of 3 who shares her story of finding out that one of her daughters had a rare muscle disorder- what that meant for her, her daughter, and the rest of her family. Read on in admiration at her strength, positivity, and confidence in her daughter. It will truly warm your heart.
REMEMBER: If you’d like to be a Parent of the Week, or if you’d like to nominate someone, simply email me at firstname.lastname@example.org. It’s that easy!
How truly exciting it was to be asked to be Parent of the Week. Being a mom of three, with one being special needs, I welcome any opportunity to share my story in hope of helping other families and raising awareness.
My name is Karen. My amazing husband and I live in a suburb of Dallas, Texas, and we have three wonderful angels for children. They range in age from 14 to 10 years.
My life drastically changed with the birth of my youngest daughter. Having no warning at all, she was born with a rare muscle disorder called Arthrogryposis Multiplex Congenita (AMC). Unfortunately, she was born with a severe form of it involving fused ribs, fused spine, inability to swallow, and brittle bones. The prognosis was extremely bleak, with the physicians giving her six months to live, tops. Being a Christian woman, and from a wonderful supportive family, I told the doctor ‘thank you for your “prediction”, but I’ll take it from here’. I refused to accept his prediction. We went for five months before I was able to get her an appointment at the amazing Scottish Rite Hospital in Dallas. There, the orthopedist diagnosed her with AMC and filled us in on what the disorder was. I immediately began researching and looking for those familiar with AMC and how to treat it in the best way possible to give her quality of life. It was a long challenging road due to the rarity of the disorder. However, while doing research one night while sitting up with my daughter, I ran across a wonderful website. Low and behold, an actual support group for AMC. I sat and cried and cried. What a relief to finally find others that have experienced all the trials and tribulations I have. From that day forward I have benefited from knowing other families from around the world, sharing ideas, contacts, joys and yes, even sorrows. The support group has become my extended family by all means.
Little did I know that my life would soon require me to do juggling acts. Forty hour work weeks, soccer practices, football practices, parent conferences and the never ending scheduling of seven different physicians, four different therapies and 120 hours a week of nursing schedules, sleep was hard to come by. Somehow though things fell into place, and my children got what they needed.
My oldest two children have had huge adjustments in their lives. From being the babies and having a lot of mom’s attention, to having to “wait their turn” to get attention from mom. The never-ending revolving door of nurses in our home day and night for years had their toll on everyone. However, my children are extremely strong and have learned so much from their little sister, and likewise I’ve learned from my children. The experience has given everyone a whole new view on life; more compassion, care, patience, and a better understanding of what life is like for a disabled child and to be his/her family.
Throughout the years, I have had low times where I asked why God would put us through this? Why he would put my daughter through this? I feel that angels are sent to us in disguise. Maybe to give us a wakeup call, saying ‘hey, you are not on the right path, there is much more for you to do and see’. I truly believe I was sent an angel to teach me, and I am extremely blessed to be one of the chosen ones.
For more information on Arthrogryposis Multiplex Congenita: