Monday, May 21, 2012

hints for special needs moms!

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Many of you know about my daughter Rory and her Congenital Femoral Deficiency.  She currently wears a 6 centimeter shoe lift on her right shoe.  Her physical therapist makes sure she is doing well with it, because she tends to roll her ankle due to the hight of the shoes.  She has her first surgery coming up shortly in less than 6 months; I know Rory will be ok, however I am a bit of a nervous wreck!
Whenever I start to think about her surgeries and having my little baby with screws in her leg, I become completely overwhelmed with anxiety, fear, and sadness.  All mothers out there know that when anything bad happens to your child, it is usually harder on you than it is on them.  When your child is sick, the feeling you have inside seeing them be in pain makes you feel just as, if not more, physically ill inside.  Sometimes, it is down right hard being a mom.
I have found a few things that help me not to become depressed each day with seeing Rory’s little leg and thinking about our future.     
  1. a strong partner: My husband is the calm, eternal optimist in our relationship.  He helps calm me down when I being to worry about the future or start to think about her up coming surgeries.  Sometimes having someone; spouse, friend, anyone who is going through the same thing you are, can help keep you grounded and focused. 
  2. educate yourself: Know everything you possibly can about the disability your child has.  After Rory was born, and we learned she had Congenital Femoral Deficiency, I immediately began researching CFD.  I made it my job to know everything there was about it.  I used a search engine called pubmed and then went to a medical library to make copies of journal articles.  We were told that we may have to have Rory’s leg amputated.  After doing research on her condition, I learned we could lengthen it with the right doctor.  Even now, some of the other doctors Rory has seen, often ask me about her CFD because it is so rare.  I find myself informing them (one doctor even told me that he feels the parents are the best source of information!).  You can never know too much!
  3. the right doctor:  I feel that it is essential for you to get a doctor you trust and are comfortable with.  When I learned we could have Rory’s leg lengthened, I once again did my research.  I soon learned for Rory’s condition there are only a few doctors who have actually performed the surgery, and one doctor that created the surgery.   I soon emailed the doctor that created the surgery and Rory is now his patient.  For me, no one was going to operate on my daughter without having experience. We travel across the country to see this doctor, but I am 100% confident in him and am so blessed he is going to take care of Rory!
  4. support: My family is our biggest support group.  They know everything about Rory’s condition and are always there to listen to me vent about things.  My parents took time out of their vacation to drive 5 hours just to stay a few hours with us before Rory’s appointment, because they know I am always nervous when we go to see her surgeon.  They provide us with unlimited support and love and that is something everyone needs!  Another huge support system are my friends.  I have also found great friends in the community who have children with Special needs.  Although I get along with most anyone, I feel very connected to other parents who have children with special needs.  I met one of my best friends at a library, of course asking her permission to ask about her daughter special needs.  (I always ask permission to ask other mothers about their child’s special needs, I know I would much rather have someone ask than just stare!) There are people out there who feel similar to the way you do, you just have to find them!
  5. activities: When Rory’s doctor gave me the “ok” to let her do everything normal legged kids do, we started planning activities.  Our local library has story times that we go to each week.  We also frequent parks, schedule play dates, and have activity time at home.  Sometimes when she rolls her ankle really bad, we have to modify her activities; rather than going to playgrounds or do other activities that are hard on her her ankles and legs  we work on our weekly hand and feet crafts!  Find activities with your child that they can do and never stop the positive reinforcement!   Sometimes surrounding yourself with activities helps calm your worry-some mind down. 
Just a few things that have helped me deal with everything.  I hope they help you as well!  Please feel free to email me with any questions or comments you may have! 

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