Rosemarie (Rose) Siggins The Woman with Half a Body – by Rosemarie (Rose) Siggins

Rosemarie Homan was born with a rare genetic disorder known as ‘Sacral Agenesis’, I had severely deformed legs with feet pointing in opposite directions.

There was no feeling in my legs and, as a child; I was in danger of harming myself. When I was two years old my mother and father, after consulting with many doctors at the Children’s Hospital, decided that the best course of action was to have my legs amputated. This insightful decision by my parents allowed me to lead a fairly normal childhood.

Rose at 10

Rose became a celebrity at the age of ten. The local TV station filmed the incredible life of the girl whose useless legs had been removed to increase her mobility. But, away from the cameras, the girl with half a body found herself to be a target. She recounts “The kids were mean to me, just because they didn’t know me or were scared of me, so most of them would resort to name calling”. [read link]

I grew up, with my mentally challenged brother, Jim Homan, in Pueblo, Colorado. I believe my parents made the right decision, about the amputation, because I could not imagine being confined to a wheelchair. My mother and father were very supportive and strong in helping me to be so strong, confidant, and independent. I have so much more freedom walking on my arms; to me it is just like having legs. I describe my physical condition in my own way “ If you take a Barbie doll and remove her legs, the region you are left with is what I have. I have all the female working organs, the only reason I sit shorter or more compact, as people say, is because I’m missing four sections of my lower spinal column”.

Rose's passion for muscle cars

I have a great passion for muscle cars, if it as a V-8 engine or a lot of horsepower, then you have my attention. I used to enjoy playing in my dad’s toolbox at the age of 3 years old and it never stopped. When I was sixteen, my parents helped me purchase my first car, a 1974 Chevy Camaro with a 350 engine. My dad and I adapted a hand control unit so I could drive the car myself.

Left Right

Family

Rose's prosthetic limbs. She refused and rebelled to wear it to school on 8th grade

Going to public school was somewhat of a nightmare for me. During the late 70’s and 80’s, school administrators were trying to mainstream those of us who were disabled in to classes with normal students. So administrators insisted I use my prosthetic limbs while I was in school. They wanted me to look like everyone else or close to it. In about 8th grade, I rebelled and refused to wear my, what I called my ‘fake legs’ to school. So I chose my way, how I wanted to get around was using my skateboard. After a few meeting with the school board they finally agreed to support my decision. My parents backed me up on the idea and helped me voice my opinion.

I met my husband in 1997, Dave Siggins, who worked in an auto parts store. We always flirted on the phone when I would call to order parts. One day I had to go to physically go to the auto parts store to handle a problem that came up. I rolled in on my board and started talking to this guy at the counter. I explained my problem and he was helping me handle it. I thought to myself, his voice sounds so familiar. He doesn’t look familiar. He was totally cool guy. He came from around the counter and knelt on one knee and talked to me eye to eye about my situation. He never looked at me in that weird way, most people stare or their mind is wondering and trying to figure out what happened to me. Dave helped me solved my problem and then asked me if I would like to go have a drink after work. I told him sure.

Rose at her wedding

Our relationship blossomed from there we married in 1999. I had the white wedding with my little dress; I walked down the aisle with my dad carrying my bouquet of flowers. I sat on a chair, while Dave remained standing. We said our vows and kissed. My father cried the entire time of happiness for me. My mother who is the strong one sat with a big smile on her face the entire time.

Dave and I always wanted to have kids. I never wanted to go ask a physician because I was afraid the answer would be no. My mom was very religious and said, “If it was meant to be God would allow it to happen”. Well, God was on our side and we discovered I was pregnant. My pregnancy was extraordinary and groundbreaking, no one with Sacral Agenesis had ever carried a child or given birth. Many doctors were concerned for my health; not having any thing to reference from in the past, many were very discouraging. Some talked of abortion, others were unsure of me as a patient. I finally was referred to a doctor in Colorado Springs, 30 miles north of Pueblo. Dr Wolfson, a neonatal genetics specialist, was willing to take the on my pregnancy. He first spoke to us about all of the dangers. He said, “You and Dave are committing to a pregnancy and Rose could be basically, laying her life on the line because nobody knows what this means, no one has lived this experience before.” He then said, “Congratulations”! We did several ultrasounds and saw the tiny baby inside me. He was mentioning many parts of the fetus. Most I recognized only one I did not. He said, “This is the Femur”. I immediately responded what is it and can we fix it. He said it is a leg bone and the baby has two. I was relieved to know he had both legs and I asked the doctor are they working normal. He said the baby is kicking away. I was so taken aback by knowing my child could be normal. I was willing to except any child from God normal or not.

Dr. Wolfson’s main concern was as the uterus expands it may compromise your lungs and cause problems with your breathing. I was monitored more closely with having ultra sounds every month for the first five, and then every two weeks until 35 weeks. We then went every week or other day until we reached 38 weeks. I had no problems during my first pregnancy. All that was feared never happened. I placed my life in Gods hands and believed he would help me. On January 6th 1999 Luke Ryan Siggins was born.

On January 6th 1999 Luke Ryan Siggins was born

My parents became grandparents and they were enjoying every minute of it. But, tragedy struck my family, after celebrating Luke’s 3rd birthday. My mother was diagnosed with terminal cancer. My mom held our family together, she took care of my dad and brother, provided emotional support and kept us together as a family. Her death had a disastrous effect on everyone especially me. I knew with her gone I would have to step up and fill her shoes. These are big shoes to fill especially when you have never worn shoes. I did step up and took on the responsibility of caring for my dad who had Alzheimer’s and Dementia.

Rose's brother Jim

My brother is mentally challenged, his mental age is about 8 years old, did not understand why mom was taken to heaven. I knew Jim and my dad would not be able to manage a house or do the everyday takes expected of them. So, Dave and I with Luke moved into my very small childhood home. Our move was met with a lot of resistance from Jim; he would leave the house, walk to the local store and tell the clerk he was being abused. The clerk would call the local police for him, and he would then tell them many stories of neglect, abuse and torture. The police with social services would then arrive in a five-alarm mode and question Dave, my father and myself. We would explain to the authorities Jim was having difficulties dealing with the fact his mom had died. After several months, of being, questioned and being threatened our son would be taken from us we found Jim some help. He now is enrolled in Blue Sky’s a wonderful program, which helps him, become more independent and supports him with counseling and a loving environment to live in.

After Jim’s departure into Blue Sky’s our family life became slightly normal. Luke was in school and enjoying as much grandpa time as grandpa could handle. Our everyday tasks did not seem like tasks but just how our life became. A few years had past and we found out I was pregnant with our second child.

On January 11th 2006 Shelby Cecilia Siggins was born

My second pregnancy was not as easy as the first. I would have to say it was one of the most difficult tasks I ever encountered. We had many late night hospital stays because I would start to bleed and doctors did not know why. It was hard at times to breath because I felt my chest was being restricted. I had pain in my abdomen where my c-section was located. Doctors were worried my uterus could rupture killing the baby and myself. Every thing was going wrong for me and my problem was I could not control it. Most of my life if I had pain or discomfort I knew what it was and how to get rid of it. But, now I had this little person inside of me causing me pain and discomfort. After a few months of being pregnant I was placed on bed rest. I had to be in bed all day and all night long, this drove me stir crazy. Just to sit and think all day about everything that has gone wrong. To watch my husband cook and clean take care of Luke and my dad and also go to school. I had to really find strength from within myself to survive day to day. I did look to God and wondered did I bite off more than I could chew. Would this second pregnancy be it for my life? I had to stop thinking like this and find strength not for me but for my baby and Luke. The day finally arrived for me to have my daughter. Dr. Weary, my Ob-GYN, for both pregnancies, had a hard time cutting into the old c-section scar and tearing through to get to the baby. The baby was under anesthesia for about 30 minutes. When they reached her she was life less, they worked on her for several minutes, which seemed like a lifetime. After several attempts to bag her, with no success, she finally took her first breath of air and you could hear her wailing of a cry. Once the baby was fine, doctors turned to me and found most of my problems, during my pregnancy. My gall bladder and appendix had to come out. After hearing I had faulty organs I was relieved to know it was not the pregnancy that caused me my problems but my own organs. On January 11th 2006 Shelby Cecilia Siggins was born.

Rose with Shelby

After five days in the hospital, I returned home and tried desperately to get life back to normal. My c-section was not healing and the possibilities of it opening were very high. So I had to return to bed rest for a few weeks I started to feel very depressed about life. I thought back to when Luke was born I had no trouble bouncing back into everyday tasks. My baby laid and cried a few feet away from me and I could not get up to help her comfort her, because the fear of my insides falling out. One night I had a dream of my mother, she was upset with me because I just lay their doing nothing. I explained to her I could not because I was scared. She told me this is not how I raised you, I expect more from you. You need to get up and out of the bed and start living life, take care of your responsibilities. I woke up, I realized I was not dead and I did have a lot to do. Moving very slowly and with caution I fed my daughter and changed her. I held her and rocked her and loved her. I realized I came close to death, but it was worth it. I would do it again if I had to because I could not live life without my Shelby. She has allowed me to put life into perspective and know that I am not superhuman and I do have limitations. Without her wanting me, needing me and crying for me, I may not have come back.

Rose's dad

Months pass and I have regained my strength and feel I have taken control of my life. My dad spends quality time with both of his grandchildren. I know his health is failing with every passing year. I decide my dad needs to go back to Nebraska, his home state, and visit is long lost brother. We packed up the children and my dad to drive the 10 hours to meet his brother. We had a great time meeting family and his long lost friends. Jack, his brother, along with his wife planned a very nice reunion barbeque when we arrived. My dad saw friends and family he hadn’t seen in forever. He enjoyed seeing the Nebraska country knowing in his heart it would be his last time.

A year later my dad was becoming tired more often and not wanting to socialize as much with the family. We found out he had Leukemia and it was in an advance stage. I made the decision to have my dad leave the hospital and come home immediately. He joined my mom in heaven on December 11th 2007.

With our loss of grandpa heavy in our hearts, Dave and I must move forward. I feel my life was placed on hold taking care of my dad; understand I would never trade in those years for anything. I must continue my life where it ended, when I came home to take care of my dad and brother. So, now my biggest question to myself is: What do I want to be now that I am grown up?

You can find her on facebook at: http://www.facebook.com/pages/Rose-Siggins/420734870360

Rose Siggins on Myspace: http://www.myspace.com/rosesiggins

This is an unofficial translated version of the “Heaven’s Very Special Child” by Edna Massimilla which Yafaau’s dad posted earlier.

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“Originally published in English: Heaven’s Very Special Child by Edna Massimilla
Copyright © 1956, 1965, 1975-2004. by This is our life publications. Translated and/or reproduced by Shifu at Yafaau’s Blog.”

A Child is like a butterfly In the wind

Some can fly higher than others,

But each one flies the best it can.

Why compare one against the other?

Each one is different.

Each one is special.

Each one is beautiful.

]]> http://yafaau.info/blog/2010/04/a-child-is-like-a-butterfly/feed/ 1 http://yafaau.info/blog/2010/01/welcome-to-holland/ http://yafaau.info/blog/2010/01/welcome-to-holland/#comments Sat, 02 Jan 2010 09:13:37 +0000 Yafaau's Dad http://yafaau.info/blog/?p=1045 The Cerebral Palsy Association of Western Australia Ltd published an excellent description of what it is like to be a parent of a child with a disability in the November 1994 issue of the newsletter “Brand News”. It is highly recommended that all relatives and friends read the “Welcome to Holland” article by Emily Perl Kingsley. A copy of “Welcome to Holland” is included here for your interest.

WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

Many years ago, the family decided to keep Ruth [their child with Down's Syndrome], with them and bring her up in the family as a very special person. The poem is a statement of their philosophy about the ”blessings” of such a child.

In recent years, the word “disabled” is many times used in place of the word “handicapped”, and Edna Massimilla has therefore published an updated version of the poem, “Heaven”s Very Special Child”, as follows:

Heaven’s Very Special Child

A meeting was held quite far from Earth.

It’s time again for another birth

Said the Angels to the Lord above

“This special child will need much love.

Her progress may seem very slow.

Accomplishments she may not show,

And she”ll require extra care

From the folks she meets down there.

She may not run, or laugh, or play-

Her thoughts may seem quite far away.

So many times she will be labeled

”different”, helpless”, and ”disabled”.

So let’s be careful where she”s sent.

We want her life to be content.

Please, Lord, find the parents who

Will do a special job for You.
They will not realize right away

The leading role they are asked to play.

But, with this child sent from above

Comes stronger faith and richer love.

And soon they’ll know the privilege given

In caring for their gift from Heaven.

Their precious charge, so meek and mild

Is Heaven”s Very Special Child”.

+ + + + + + + + + + + + + + + + +

^{Copyright 1956,1965, 1975-2004. Edna Massimilla/This is Our Life Publications. All rights reserved.}

When a child is diagnosed with cerebral palsy, the parents face many new emotional and physical demands. In the initial years they have to learn to cope with the special needs of their child. Parents also have special needs themselves which require special understanding and support from family and friends.

How can relatives and friends help?

Talking With The Family

Keeping an open relationship with friends and relatives is one of the most effective ways to reduce the pressure on parents of a child with a disability. The following suggestions may help you to develop the type of communication that the family will appreciate:

• Be open and honest about your own feelings about the child when speaking to the child’s parents.
• Listen actively when you talk with the child’s parents (more than “hearing” what the parents have said “think about what they tell you and what they may be trying to tell you”).
• Keep communication lines open. Be available to talk, to listen and to encourage the child’s parents. For example, arrange a time for a coffee and a chat.
• Ask questions. If you do not know what parents need from you, simply ask them.
• Allow more time than usual for tasks to be done. Be patient with the parent and child. The physical disability associated with cerebral palsy means that tasks take more time and less speed. For example, it takes much more time to get in and out of the house and car.
• Accept the parents’ honesty about the problems their child has and may face in the future. Parents will not lie about their child’s disability as they have nothing to gain from it.
• You may want to more fully understand the child’s strengths and needs. If you feel your relationship with the parents is very close, you may consider asking the parents if you can go with them to a session with therapists or a medical practitioner.

Dealing With Denial

One of the most difficult things for parents to deal with is the denial of their child’s diagnosis from family and friends. Worrying about how to deal with the reactions of their own relatives and friends creates further pressures for the parents of a child with a disability.

There are ways of reacting that can create additional burdens for the parents who are attempting to cope with the day to day reality of having a child with a disability. Some of these are:

• denying that the child has a problem (“Don’t worry, there is nothing wrong”), trivialising the difficulty (“He will grow out of it with time”), or hoping for unrealistic cures (“It is amazing what doctors can do these days”). With parents, denial is part of the normal reaction to the news that a child has a disability. Denial helps avoid the pain and grief associated with the diagnosis. However, with time and support a degree of acceptance can be achieved.
• Even though you may not be the parent of the child, it is normal for you also to have difficulties with denial or grief over the child’s disability. You may think about seeking support for your own needs and feelings in order to better support the parents and the child.
• The opportunity to exchange information and to discuss feelings with relatives of other families will provide you with mutual support in the acceptance of the diagnosis of cerebral palsy. Arrange a meeting or phone conversation with another family or form a small group. You may contact a Social Worker if you live in the islands who will help you with organizing such a meeting.

Therapy and Medical Appointments

Parents of children with cerebral palsy see many medical practitioners, therapists and other professional and care staff. These people have the best interests of the child at heart when suggesting therapy and courses of action to follow. As parents often face many “unknowns” with cerebral palsy, the professional expertise and advice they receive is very important to them. As a family member or friend it is important that you support the advice and efforts of the professionals that the parents trust and respect, even though you may not agree with what they are doing.

Your acceptance and support is both necessary and valuable to families with special needs.

Support and Empathy

Parents of children with cerebral palsy have very real reasons for needing extra support from the people who are close to them. This includes both emotional and practical support.

Emotional Support

You can help the family by:

• being there to talk,
• listening to the concerns and frustrations of the parents. Emotional support is the most important support that can be offered by family members.

Practical Support

You can provide reliable help to the parents on a regular basis

Offer help with:

• shopping,
• errands,
• childcare,
• chores,
• and emergency situations (“being there” to look after the other children during an emergency).

If you can offer to make regular visits to provide help, the commitment to reliable practical support lets the parents plan their busy schedules more smoothly. You could talk with the parents about going around once a week at a particular time and doing an hour or two of washing or babysitting to lessen the load. However, every parent requires differing levels of support depending on their individual situation. The best strategy is to ask “What can I do to help?“

Empathy

Parents do not want sympathy! What they want is empathy, which is an effort by you to understand how they are feeling and what they are going through. To gain empathy, you could try imagining yourself in the parent’s or the child’s shoes and walking around in them for a while. Below is an outline of the additional stresses identified by parents caring for a child with cerebral palsy. The following pressures are above and beyond the daily hassles and stressful life events that all families experience. Reading them may help you to understand the family’s situation better.

• Frustration with not knowing what will happen with the child long term and the difficulty of finding clear answers.
• Feelings of guild if not continually attending to the extra needs of the child as well as those of other members in the family.
• Questioning why the child has cerebral palsy, and if it could have been prevented.
• Dealing with the chronic grief and loss for the “normal” child the parent does not have.
• Concern about acceptance of the child into the community (school, shopping centres, playground).
• Worrying about future planning for adult life (education, employment, having a family, accommodation).
• The fatigue that goes with having to continually provide the child with daily care for possibly years beyond normal expectation. Families have difficulties with feeding, dressing, toiletting, bathing, heavy lifting, play, therapy, placing splints on.
• The pressure of attending many therapy sessions per week. Appointments may include 3 to 5 days per week at a physiotherapy department, plus specialist appointments, hospital appointments, reviews and testing.
• Less choice or freedom in activities and plans as the special needs of the child must always be met (such as not being able to attend family outings because of therapy; uncertainty about choice of school in the future; will the child be able to attend the local mainstream school?)
• Disappointment and frustration at not achieving developmental milestones (not sitting up at expected age, lack of feedback from child due to disability).
• Risk of marital difficulties. There can be a lack of acceptance, understanding and support from one partner and additional stresses on the caregiving parent, such as sleep deprivation.
• Dealing with the effects on brothers and sisters. How they are feeling or coping with difficulties? Other children may not understand why Mum and Dad spend more time with the child with a disability. Feelings of guilt, rebellion or rivalry are common.
• Concern about planning more children due to the unknown causes of cerebral palsy and the unknown outcome of future pregnancies. Parents are uncertain about whether it could happen again to the next child, and whether they could cope if it did.
• Feelings of being “trapped” because of the physical efforts and extra organisation needed to go out (from simple family picnics to longer, planned holidays). Traveling for all outings requires regular lifting of the child and of many pieces of equipment (walking frame, pusher, wheelchair). There are concerns about enough room in the car, finding places with appropriate facilities, wheelchair access, toilets, difficulties involved in lifting and positioning the child, accommodation, problems with eating out and specially prepared foods. All of these factors make it difficult to plan long term and makes the family less able to make a simple decision to go out.
• Always having to put your own needs aside in order to cater for the extra needs of the child.
• Financial difficulties (housing modifications, need for a special car, medication, respite costs, equipment, special toys).
• Returning to work is difficult due to treatment and special needs of the child.

Having all of these pressures can make the role of parenting seem a difficult and unending struggle. At certain stages, the stresses can appear particularly high. However, parents won’t feel all these stresses at the same time. In fact, just like in any other family, feelings of happiness, achievement and satisfaction can be, and are, enjoyed. The main message is for you to be aware of what life may be like for the family. Most burdens can be lightened by the caring support and open communication that you can provide as a relative or close friend.

What can friends do to help?

The extended family can include friends who are not necessarily blood relatives. Close friends can offer invaluable emotional and practical support to parents. However, many close friends feel uncomfortable about asking about the child’s development. In general, parents prefer their friends to be honest, open and interested in their child’s developmental strengths and needs.

Don’t be afraid to ask questions about cerebral palsy or the child. Be open and interested in finding out more about cerebral palsy. Follow the child’s development with the parent. Remember that parents do not have as much time to socialise as they may have had before. Don’t compare your own children with the child with cerebral palsy. Offer emotional or practical support to the parents when possible. Try to keep communication lines open. Make it a habit of simply phoning to say hello.

The Cerebral Palsy Association of Western Australia Ltd published an excellent description of what it is like to be a parent of a child with a disability in the November 1994 issue of the newsletter “Brand News”. It is highly recommended that all relatives and friends read the “Welcome to Holland” article by Emily Perl Kingsley. A copy of “Welcome to Holland” is included here for your interest.