Help For Moms of a Special Needs Child

cute girl swinging

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!   If you want any more information go to http://www.roryjane.com.

Be sure to check out some of the wonderful hand and feet crafts that Rory has made lately.

12 Comments

  1. Thank you for this beautiful post. Such a darling daughter you have. Doctors can do amazing things these days. We have a friend whose daughter has an artificial leg below the knee and she is doing beautifully.. Her friends loved pushing her wheelchair while she recovered. Your in our prayers. I know everything will work out for the best. Have you ever seen this amazing boy? He gives inspirational talks to soldiers and kids in children’s hospitals and Cydney got to meet him: http://www.dailymail.co.uk/news/article-1160954/With-pairs-legs-I-feel-10-feet-tall-The-boy-7-doesnt-let-double-amputation-hold-back.html

  2. When I look at that picture I see a delightful, happy little girl.
    I ™m dyslexic. When I was five years old, my parents were told that they would have to take care of me for my entire life. Regardless of this pronouncement and the opinions of some educators, my parents continued to believe in the soundness of my intellect.
    What helps me is focusing on the gifts my unique brain has given me.
    Despite the challenges I encountered with spelling and reading I ™m a published author. Thanks to dyslexia I have a pool of creativity in which to draw.
    ˜Otherness ™ is only a disability if it is viewed in that light.
    Please give your daughter a hug from me.

  3. wow… what a touching story. i’m so glad that you’re blessed to have such a wonderful family to support you. to be honesty, i didn’t even notice her elevated shoe until i read it in the passage… i had to go back up to the picture and look. so yes…. her gorgeous little smile just dominates it all! thanks so much for sharing this! *pinned it to several of my boards*

  4. Wow. I love this post. I love that image. Well done, mama. ~ Marnie

  5. A friend forwarded this link to me and I am so very glad she did. I too have a daughter with multiple special needs. First and foremost, your daughter has the brightest most beautiful smile- that is what I see and that gorgeous blond hair of hers! My daughter Alexis has a rare congenital syndrome called Albright’s Hereditary Osteodystrophy. She has had a ‘few’ surgeries, most orthopedic in nature herself! Our doctors are here on the East Coast at Alfred I DuPont, Nemours hospital… just wondering if you care to share where you will be doing your daughter’s surgery. Alexis has one leg that is a bit shorter and a bit smaller than her other leg and wore shoes similar to Rory’s for a number of years. Her length discrepancy is only about a 1/2 inch and now she is able to compensate very well without the lift. She has had 3 Achilles tendon lengthening surgeries over the years, Bilateral resections of her second metatarsals, and ‘eight plates’ above and below her knees to try to correct her legs from growing bowed out from the knees. Alexis’ hips rotate outward so her knees and feet appear to point outward. My daughter has mental retardation, mild CP, short forearms and short stature…

    I too struggle with the day to day, sadness and have had points of deep depression. I have many fears for her future as her life expectancy is limited to her early 30’s ‘if all goes well’. WHY, am I telling you this? Because you are a special mommy too! When I have bad days the one and only thing that cheers me is my daughter’s smile. She is a joy to all who meet her. Alexis is most known for her smile and a contagious chuckle that can get the whole room in tears with laughter.

    I blog at http://www.tiarasandbowties.blogspot.com, I have written a bit about her on my blog and have recently decided to open up a bit more about my life as a special needs mommy. I would love to get to know you and Rory better, I’ll be stopping over at your blog too! Thanks for writing your post about helping SN Mommies!
    Kim

  6. I found this post very interesting! I have a younger brother who also has CFD of his right leg, although his hips, knees, etc. are completely normal, and his lift is also about 6 cm. My reason for commenting, though, is that I also have a younger sister with cerebral palsy who underwent major surgery on her femurs 2.5 years ago and was in a SPICA cast for 6 weeks. If you ever wanted to question someone who’s BTDT, please feel free to e-mail me! Some doctors are great at preparing you for the SPICA experience…and some aren’t. 🙂 (I’m good friends with QM Rachel, BTW.) 🙂

  7. Same as Andie, didn’t even notice her shoe, just her gorgeous smile. Wishing all the best for your family. Looks like you have a very happy and much loved little girl which is the most important thing. Debs

  8. Beautiful smile. Great post.

  9. Hello Havalyn, First of all Rory is so BEAUTIFUL, and i wanted to thank you for all your posts. Unfortunalty for some reason i can not access Roryjane.com. But i would really like to chat with you. I found this page when I was looking up CFD. My daughter Sophia also has CFD, And i have been trying to educate myself as much as possible. If you dont mind answering some questions I would really appreiciate it. My email is Layasmom29@yahoo.com If you are interested.

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