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Papa's sweetheart.

I just picked up some new pictures of my beautiful six-year-old daughter, Allison. While I was looking at the pictures, I was suddenly struck with the desire to brag about my little girl.

I cannot begin to describe the agony my daughter has endured since her birth six years ago, nor can I adequately describe the joy she has brought to my husband and me. Her stubborn determination and her great love for us and for everyone in her life are inspiring.

She was born after a normal pregnancy and immediately had trouble breathing. She spent the next five weeks in a neonatal intensive care unit. During that time, we discovered that Allison had very low muscle tone and facial paralysis. She had to be tube-fed and could not blink. In fact, her eyelids were so droopy they were almost closed, but her vision was and still is pretty good. She was seven months old, however, before we were certain she had to have tracheostomy surgery to help her breathe.

On July 1, 1986, we finally took Allison home. She had a tracheostomy tube, a feeding tube and an apnea monitor, but no diagnosis. We had no idea what to expect. After seeing many other doctors, we took her to the Mayo Clinic where a neurologist finally diagnosed that she had congenital hypomyelinative encephaloneuropathy, meaning she has very little myelin insulating her nerves.

It was not until a couple of years later, during a follow-up visit, that we realized the extent to which this doctor was amazed by our daughter, Based on what he knew about the importance of myelin, he had expected Allison to be completely non functioning, both physically and mentally. As it turns out, we (and her doctors) believe that her cognitive abilities are normal, despite a lot of physical obstacles. Her muscles are weak but getting stronger all the time. She crawls all over the place and can walk some with a walker. She can now sit very well and has good fine motor skills.

Every doctor we have taken her to has been amazed that when Allison was only four months old, she began holding her eyelids open one at a time with her thumb to help her see. She did this with great speed and accuracy -- she never once poked herself in the eye. Just for variety, she would sometimes even use a rattle to hold her eyelid. Allison could not crawl because she needed one hand to help her see. When she was three years old, she was finally able to have surgery to lift her eyelids. She began to crawl the very next day.

When Allison was two years old, she had her tracheostomy tube removed. She has had no breathing problems since.

Allison's Illnesses

By far the worst of Allison's problems is her illness. It started when she was a year old. She would stay "well" for about seven days and then she would be very sick for the next seven days. At times she vomited so much we had to feed her nothing but Pedialyte for days just to keep her hydrated. This has been going on for five years. The pattern is erratic at times and she vomits less now, but essentially she is sick 50 percent of the time. It is a nightmare for all of us. So far, her doctors cannot find any way to help her, but they are still trying.

At age six, Allison is making wonderful progress! Speech has always been very difficult for her because of the facial paralysis. Even though her hearing is normal, my husband Patrick and I began teaching her sign language when she was about two years old. Patrick and I had to teach ourselves first, so unfortunately, Allison often had to wait for us to learn the signs she needed.

By the time she was five, she had a sign language vocabulary of over 300 words and could sign the alphabet and numbers one through 10. Her verbal skills amounted to about 20 words. Now, a year later, she has pretty much stopped adding to her sign vocabulary but her verbal skills consist of over 200 words. It is now difficult to keep track because she says new words almost every day. She often uses five- and six-word sentences. She will attempt to say almost any word we ask her to, even though she has to use her hand to push her lips together to make bilabial sounds like "b," "p" and "m."

She is still tube-fed, but loves to taste food and can now eat small amounts of baby food. Her feeding skills are improving slowly and steadily.

Often I am overwhelmed by my daughter's ability to live her life with such strength and determination, only seven days at a time, despite so much illness. When she is sick, she is very sick. It makes her very angry and sad, yet she never shows the slightest sign of bitterness once the illness is over. She refuses to waste any of her "well" time. I used to be afraid that Allison would look at me while she was sick and wonder why I did not do anything to help her. I am so thankful that she understands how much I love her and that I would do anything to help her if I could. She actually seems to make a special effort to tell me she loves me when she is the sickest. Many times she has even gained new skills in the middle of an illness. Several years ago, she pulled herself up to a standing position for the first time while she was sick.

Good Days

When Allison is well, life is wonderful! She is so sweet and funny and very loving. She is always telling Patrick and me that she loves us and she is always kissing us. Allison is very lucky to have the best grandparents, aunts and uncles she could hope for. They all live far away from us, but we see them as much as we can. Allison loves them all and talks about them a lot. She especially loves to talk to her Grandma and Grandpa (who she calls Papa) on the telephone. Ever since she was a baby, my Dad has told her that she's "Papa's sweetheart." When she was about two years old, I finally taught her to sign "Papa's sweetheart" as a surprise for my dad. The next time she saw him, she immediately signed "Papa's sweetheart" for him. My dad loved it! Now every time she sees her Papa, the first thing she does is say "Papa" (she can speak the word now) and sign "sweetheart." I have a feeling this ritual will continue for a long time to come.

Allison's main goal in life right now is to have fun. We go for walks to a nearby park where she swings and goes down the slide. She says she wants to swing up to the sky. She loves to paint at her easel and write on her chalkboard. She has just begun to teach herself to write the letters of the alphabet. So far she can write "i," "l," "t," "m," "x," "o" and "h."

She has been learning all this by herself -- she keeps calling me over to her chalkboard to show me what she has written.

Allison loves to listen to music and dance. She especially loves to dance with her Daddy and her Papa. Allison has unusual musical taste for her age. She likes Mozart, Fats Domino, Nat "King" Cole, Van Morrison and her very favorite - - Ella Fitzgerald. She is very particular about who she wants to listen to at any given time, and, believe me, she knows it if I try to sneak something different past her. She has her own autographed picture of Ella Fitzgerald. We have to take the picture down off the wall almost every day so she can look at it.

Even before Allison could talk, she had a real sense of humor. One summer, when she was two years old, my husband (who is an Episcopal priest) spent a week as chaplain at a church camp for nine-year-old kids. A friend of ours took Allison and me to the camp to visit one day and we arrived in the middle of an outdoor worship service. They were singing a camp-type Christian song and my friend and I were innocently joking about the song because it was just not our style. Every time they came to the end of the refrain, "Have you seen Jesus in my Lord?" Allison would very emphatically shake her head "No!" Every time! As I said, she has very definite musical preferences. She has never really liked cute, sing-songy children's music. One time I turned on a new children's tape that someone had given her and she immediately began to cry and sign "turn the tape off!"

She does love some children's songs, but only when someone sings them to her. Her favorites are The Eensy Weensy Spider and Twinkle Twinkle Little Star. She loves songs with hand motions that she can do herself. She also likes me to sing a few words of a song and then stop; she will say the word that comes next.

Allison has become a well-behaved and helpful little girl. If she hears one of us washing dishes, she will crawl to the kitchen as fast as she can and beg us to let her help. She is very good at rinsing. I also do not dare vacuum or fold laundry without letting her help.

The Future

I plan to take full advantage of her desire to help when our new baby arrives. We are currently waiting to adopt a newborn baby. We do not know how much longer we will have to wait, but Allison is very excited about the prospect of being a big sister. She tells me that she will give the baby a bath and rock the baby. I hope this participation will help her to still feel important even though she will not be the only child anymore.

Patrick and I are trying hard to prepare Allison, as much as possible, for life in this sometimes very cruel world. Unfortunately, the older she gets, the less tolerant some people will be of her disabilities. I am afraid Allison's intelligence will make her painfully aware of the insensitivity and cruelty of other people. Thank God this world is also filled with a lot of wonderful, compassionate people who will admire Allison for all the obstacles she has overcome and accept the things that still make her different.

Patrick and I love Allison so much and we are eternally grateful that she is our daughter!

Catherine Twomey, a homemaker, lives in Dixon, Ill., with her husband, Patrick, and daughter, Allison, 6. Twomey has a bachelor's in elementary education from Oakland University in Rochester, Mich. She is very active in St. Luke's Episcopal Church where Patrick is a priest. The Twomey family is still waiting to welcome an adopted newborn baby into their home.
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Title Annotation:caring for a child with hypomyelinative encephaloneuropathy
Author:Twomey, Catherine
Publication:The Exceptional Parent
Date:Jun 1, 1993
Words:1859
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