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09-13-2014 07:09 PM

Moms of spina bifida children - do you sometimes feel cheated?
I love my son dearly, but I am frustrated at the thoughts that he may have severe mental or physical disabilities.
His MRI showed severely abnormal brain. I like to think he is normal, but he is only 3 months old and doctors say he may not do any of the things a normal child will do.
Sometimes I feel cheated that I didn't get a son that I could take fishing or that would do well in school.
He loves me like crazy and is a very cuddly and loving baby.
I am thankful for that.
But all the unknowns frustrate me.
Do you feel cheated at times with a child that is less than perfect? 11-22-2018 10:55 PM

Newcomer to this site
Hi, my name is Cindy I am new to this site.I am the Mom of an adult child with spina bifida, hydrocephalus and chiari malformation. My daughter was born with an L5 leasion level. I was told she would be totally incapacitated for life and the best thing for her is that I pray for her to die. I have never felt cheated but I have felt blessed since the day she was born. I also didnít know what her limitations would until she reached each milestone. Then I was able to see just what she was capable and not capable of doing. My daughter is now 36 years old along with her spina bŪfida she has undergone a left below the knee amputation and due to her frequent shunt infections and shunt revisions she has developed epilepsy. I am here to tell you, donít underestimate your son. My daughter, Jamie, has always and still is totally independent.She also has a urostomy and colostomy that after about a week of showing her how to manage them has also become independent with that. She is the kindest most loving young lady you would ever want to know. I am very lucky and proud to be her Mom. I wish you love and happiness with your little boy. I hope my experience helps you and encourages you to enjoy and treasure what your little boy is capable of doing rather than what he is unable to do . Blessings

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