As a Mother, Never Suppose the Limitations of a Special Needs Child

Never suppose the limitations of a special needs child

It was the morning after I had delivered a beautiful baby girl when a doctor that I had never met before walked through the hospital door and said, “well, your daughter has a 50-50 chance of ever being normal”. Quite stunned and without my husband by my side he proceeded to tell me that my daughter had been born with a form of an open spine called a milomeningiosil.  He said that she would have to go through delicate neuro surgery to close the spine.  Most babies born with this condition cannot walk, have no control over bowls and bladder and are usually mentally disabled and spend the rest of their life in a wheelchair.  The surgery took place 1 month after her birth.  It seemed to be a complete success but we were told that we would have to watch her for water on the brain for the next year.  The year quickly passed and in that time she could walk and she had started talking at a very young age of nine months old.  The only problems we could detect were problems with her urinary tract functions.  They were repaired and we seemed to be on our way to a healthy, normal little girl.  We felt very blessed knowing that all the priesthood blessings were fulfilled.

When she turned 22 months she became very ill with flu-like symptoms.  She was so ill that we took her to the emergency room and our pediatrician met us there.  He felt that it was a bad case of the flu and sent us home and we were told to keep her well hydrated.  That night she cried all night long, moving her head back and forth. Holding or comforting her did not stop the crying.  As very scared parents we took her back to the hospital again.  This time they did a spinal tap on her.  They would not let me go into the room for the test but as I waited in the hallway I could hear the most horrible screams coming from my baby.  It was more than I could bear.  The diagnosis came back as spinal meningitis.  The doctor told us she was so ill that he did not feel that she would make it.  I remember falling on my knees and begging my Heavenly Father to please let her live.  I felt my whole world had just ended.  At that point I got a glimpse into a parent’s life when they lose a child. I hope I never have to experience that feeling again. That night the bishop came to her room and gave her a priesthood blessing.  I remember his words today as if it were yesterday.  He said among other great things, “She will be healed through your faith”.  I am a person of great faith and I can’t express to you the relieved feeling that came over me when I knew that I would be able to keep my precious little girl.  We also had a special fast for her.  The Relief Society President relayed the words from the closing prayer of the fast.  One brother at church stood and said in his prayer that as an adult she would stand on her feet and thank her Heavenly Father for her good health and strength.  That prayer was answered in her behalf and she has done that very thing.

At the time Lisa was hospitalized I was carrying another baby that would be born in just four short months.  As difficult as it was I never left my daughter’s side.  I would sleep on the floor beside her and the doctor would chastise me for not going home in my condition.  She had to be strapped down for two solid weeks both arms and feet because of the placement of her medication behind the clavicle bone.  She was a thumb sucker and that was extremely difficult for her so I would untie her arm so she could suck her thumb and watch her very closely so that she did not damage the placement of her medication, but again I was chastised by her doctor.  She had been potty trained at a very early age and they had to put her back into diapers that was also very difficult for her.  After a very long 2 weeks in the hospital we were finally able to take her home.  When I got her out of bed her little legs would just fall beneath her and she was so weak that she was no longer able to walk.  We had to put her back into a walker and she had to learn how to walk all over again.  Once she got her strength back she would run from one end of the house to the other screaming.  We didn’t know why.  We were in testing for four months at the University of Utah and Primary Children’s Hospital.  They diagnosed her with a profound hearing loss and said that her brain would be in the healing process for two years and that they would not be able to tell if she was mentally disabled or not for that length of time.  The day we fit her with her first hearing aids was in April at the Utah School for the Deaf.  My new baby daughter was just one month old, and I had to start the very very long wait of two years to know if my child was mentally disabled.

She entered the Utah School for The Deaf the next fall.  The staff and administration met without us to look at her audiogram to help us determine which mode of training would be best for her.  The Utah School for the Deaf offered two different modes of training. We could choose sign language and theoretically learn to speak, or we could choose the oral program denying the child any type of sign language and learning to speak through listening skills.  The suggestion came back from the professors at the Sky High Program at  Utah State University and the teachers and staff  from the Utah School for the Deaf that Lisa’s Hearing loss was so profound that she would never be able to speak and that we should choose total communications which is sign language.  One of the teachers that was in the meeting disagreed with the decision and shared what had been said, “If these parents choose the Oral Program they are psychological misfits and cannot accept the fact that their child has a disability.”  I was so upset!!!  From that moment on I listened to the spirit of the Lord for direction of how to take care of my little girl. We enrolled her into the oral program.  I have to say that I did almost the opposite of any suggestion that was made for the next seven years at the school.  If I had listened to the administration she would have become a person totally reliant on the help of others through her entire life!!!  I mainstreamed her into her regular neighborhood preschool, into regular kindergarten and then completely mainstreamed her into the public school system by the time she was nine years old.  During the first seven years she attended the USD part time, the teachers there were wonderful and they really helped Lisa a lot.  They also had the Sky High program where instructors would come to my home to help teach me how to work with her. The first two years there were academically slow, but after the two years of her brain healing she became the brightest child I have ever met.  Again we thanked our Heavenly Father for such a miraculous blessing.

Again, we mainstreamed Lisa into the regular school system at age nine years old.  It was totally against the wishes of the Utah School for The Deaf.  They said that we would not get nearly the care at the district level as we had had at the Utah School For The Deaf and that if she was going to succeed I would have to put on the boxing gloves with the administration and faculty because they did not want a child with a disability in their class room.  I told them I could absolutely do that and I did.  I was not a popular parent but I knew the law and my rights and I fought for everything she needed.  At times I was treated rudely, but I didn’t care.  I knew when her education was all said and done I would have the best possible child that would succeed at anything she put her mind to.  I knew in the years to come I would still have her and I would probably never see those teachers again.  I do have to say that through the process I did have many teaches that really cared and went out of their way to help, even professors at BYU.

I won’t say that this journey has been an easy one but so worth the effort.  If I had had a crystal ball before I had Lisa and I was told that I would experience such a trial I would have run as fast as I could the other way.  Today looking back I would not have traded this experience for anything.  I have grown as a person in so many ways.  My family has grown and has such an appreciation and kindness for others with disabilities.  The successes in life that Lisa has experienced have been far greater than I had ever dreamed.  I owe so much to my husband, my children and all the positive people in Lisa’s life that helped her along the way.  BUT… I’m  most grateful to my Heavenly Father for the inspiration he provided every step of the way.  I owe him so much and my testimony of faith, the promptings of the spirit, and how much he loves each of us has grown enormously.

I want you to know that my daughter has also stayed very close to her Heavenly Father and she is one of the most determined, disciplined, dedicated, and hard working individuals I know.  Without her personal efforts none of these accomplishments would have been possible. I would just like to share with you some of the highlights of her life thus far.  She graduated with a 3.95 GPA from high school. She received her Master’s Degree and graduated with a 3.75GPA. She is now a Physical Therapist.  She became a concert pianist at age twelve and from then until she was nineteen performed in every concert hall in Utah.  She was Utah’s Miss Teen, Miss North Ogden, and Runner up to Miss Utah.  She served an LDS mission to the hearing (not sign language which she has never learned). From the time she was sixteen years old she has been a motivational speaker (remember we were told that she would never learn to speak and that her reading ability would never go past 5th grade level). She enjoys a very normal life and is married to a wonderful and very patient man who also struggles with many ailments and completed medical school.  They have four beautiful children that I adore.  I can only say that with God all things are possible, but we as individuals must work hard and have faith that things will turn out as the Lord wants them to.

Story written by: Anonymous

This story appeared first on Real Imprints.