Spring, 2006

Rosalia’s Story

   In the fall of 1991 my life-time dream was becoming a reality; being a mother.  Finding out I was pregnant was the best news I  could have received.  I immediately chose a doctor and set up my first appointment.  During my pregnancy my boyfriend and I split up.  I knew it was going to be a long road, but I was prepared to do it on my own.  The thoughts and dreams of how our lives would be flooded my head.  If it was a girl; Girl Scouts, dance lessons, and pink  frilly dresses.   If it were a boy; Boy Scouts, baseball, and expensive shoes.  All those thoughts changed shortly after her birth however.  Now the thoughts of “will she make it”, “how will I cope”, What will she be able to do”? My daughter, Rosalia, was born with a seizure disorder and spastic quadriplegia cerebral palsy, which means all four of her limbs are affected.

My pregnancy went well and as time for my delivery  neared the excitement I felt also grew.  My due date came and went, so a stress test was ordered to see how my unborn child was doing.  There was some concern at this time to the amount of amniotic fluid left for Rosalia’s well being.  They scheduled me for another stress test two days later.  When we arrived, I was hooked up to the test, and eight hours later they decided it time to induce labor.  The technician advised a caesarian section, as he felt it would be safer for my child,  but the doctor wanted to give me a chance to deliver naturally.

During the course of my labor, my Rosalia lost oxygen more than once and crowned about eight hours prior to delivery.  I pushed for five and a half hours causing her to become stuck in the birth canal.  After thirty-eight and a half hours of labor, it was decided I go for an emergency C-section.  Forty-five minutes later I was taken into surgery.  Rosalia was so stuck because of all the pushing, the doctor had to pull on her for some time before she was finally born.  I was able to hold her for a few minutes, then she was taken to the nursery.  Due to the long hard labor, Rosalia has cerebral palsy, a seizure disorder, is developmentally delayed, and has a permanent ring encircling her head; her own halo.  To this day she still shows the scarring from her birth.

The next morning they brought Rosalia in for me to see and try to breast feed.  She didn’t take to it and needed to be tube fed.  After about five minutes, they took her back to the nursery and I rested.  Later that afternoon I received a phone call from Rosalia’s doctor; she informed me my daughter was having seizure and if they continued she would have to be transported to Mary Bridge Hospital.  She also told me there was a chance Rosalia wouldn’t make it.  I couldn’t believe what I was hearing; I thought Rosalia was in the nursery because we both needed rest.  There I was at the hospital by myself and just given the worst news I’d ever been told.  My new born child may not live.  Questions started running through my mind;  “how could I handle such a terrible ordeal?  Why was this happening to us?”  I got on the phone and called my family to tell them the terrible news.  They drove the hour and a half back to the hospital.  Later, I received the call; Rosalia was still having seizures and was going to have to be transferred.  I was able to go and see her just before she was transported.  Now, Rosalia and I were at different hospitals.  A doctor from Mary Bridge called and told my father Rosalia was in bad shape and she may not make it;  they would call and let me know if she didn’t, though if there were time for me to come and see her prior, they would have me transported up.

The social worker at the hospital came and told me Rosalia had alcohol in her urine and questioned me to what I’d been drinking.  She told me I had admitted to using alcohol during my prenatal visits.  I told her yes, I had drunk one wine cooler and half a beer prior to knowing I was pregnant.  That was the extent of my drinking during pregnancy.  She informed me it was my fault my daughter had problems; caused by my alcohol use.  Rosalia’s problem is not FAS (fetal alcohol syndrome), it is cerebral palsy and seizure disorder which was due to her birth.

I spent the next nine days in the hospital after Rosalia was sent to Mary Bridge Hospital.  The day I was released I went to see her; she was still being tube fed.  I visited as often as I could while she was there.  After about a week, Rosalia was transferred back to the hospital where she was born, and I was able to stay in the hospital with her for the remainder of her stay.  Working with the nurses in the nursery, we found Rosalia could suck from a clef lip bottle.  She wasn’t eating much from the bottle and the doctor told me she may need a G-tube put into her stomach to feed her through.  I couldn’t imagine having to feed her through a tube so I asked the doctor to put her on demand feedings.  I told him I felt the reason she wasn’t eating was because she wasn’t hungry.  The nurses were feeding her every three hours.  He agreed to let her be on demand feedings, and from that time on she ate the rest of her meals from a bottle. Rosalia was about one month old when the doctor came back from a three day weekend and released her.  Off we went to spend our lives.  How happy I was, my daughter had survived a life threatening ordeal.

        The first 6 months of her life, Rosalia would cry for hours on end.  I was thankful to be living with my parents for the first 8 months.  I know I could never have dealt with her crying all alone.  My parents as well as my entire family were and are helpful and supportive.

Rosalia started physical therapy at the age of one month; a therapist would come to the house.  At the age of one year, Rosalia started going to the developmentally delayed preschool at Aberdeen High School.  She received occupational and speech therapies along with the social interaction with her classmates.  Rosalia attended preschool there for two and a half years, then I decided to send her to Ocean Shores Elementary.  I believe Rosalia was the first student to attend that school with her degree of disabilities and wheelchair bound.  There was a lot we all needed to learn.

It was at this point in Rosalia’s life that I needed to start being her advocate.  We had numerous meetings, some where I felt it necessary to bring an advocate with me.  I chose to take her out of school prior to the end of the year as I felt she wasn’t being treated as an equal;  I found out she was being segregated from the rest of the class.  I’ve had people tell me I’d never have to worry about anyone mistreating Rosalia, she was such a joy., and my response was: “Yes I do, it is already happening”.  The following year, Rosalia went back to Ocean Shores Elementary and continued her schooling and therapies, and things went well.

When Rosalia was about 10, we had concerns about her right hand.  Her cerebral palsy is called spastic quadriplegia, which means all four limbs are affected.  Her right side was affected more than the left.  After talking to a neurologist, we decided to inject botoxin into her right arm to relax the muscles.  This would give her more opportunity to gain movement and more control over the use of her hand.  She had injections of anesthetic to numb the arm because the botoxin needs to go into the muscle and that is very painful.  She had a total of nine injections that day.  This was a very painful experience for  both Rosalia and me, but we could see the effects from the injections almost immediately.  Since then, Rosalia has had one more set of injections and we are still pleased with the results.

When Rosalia turned eleven, she got her first power wheelchair.  We were thrilled with the independence and self-confidence she gained and how she became an expert in handling it so soon.  Along with her independence also came defiance; if she didn’t want to do something, she would head the other way.

When it was time for Rosalia to enter middle school, my concerns rose again. The middle school in North Beach is on the second floor, and although there is an elevator, I was still concerned about her falling down the stairs or getting trampled in the halls.  The transition went well and she had a wonderful year.  Her  teacher worked very hard at developing  a good program for Rosalia.

During this year, she started going to therapeutic horseback riding at Horse Power in Olympia. This has been a wonderful experience for Rosalia and she thoroughly enjoys it.  It improved her balance and posture and she is using her right hand even more.

The summer Rosalia turned 13, she was able to go to the Arcin’ Round summer day camp.  She was only able to attend the last week, but what a week that was for her!!  I was concerned about her going, but when we got there, I could tell it was going to be a good experience.  The people working were wonderful.  They made Rosalia feel welcome and made me feel comfortable leaving her there.  I wish she could have gone all four weeks.  I feel fortunate to live in an area where Rosalia can be involved in the programs The Arc has to offer; such as Parent to Parent and Arcin’ Round.  As a parent, it is reassuring to know there are people out there that care as much as you do.

At the beginning of this school year, I started a new job which meant a move to Aberdeen.  I called the Aberdeen School District and met with school staff to discuss what I could expect from the school.  This has been a wonderful change for Rosalia. She is going to Miller Jr High where there are classes offered that were not available in North Beach.  She has even started riding the Grays Harbor Transit’s special needs dial-a-ride to physical therapy by herself once a week.

Since Rosalia’s birth I have grown.  I’d always wanted to work with children, but it wasn’t clear what I wanted to do until Rosalia started school. I started out as a Para-educator in the elementary school, then transferred to the high school where I, as a parent, grew even more.  A new student with similar disabilities to Rosalia’s moved into the district and working with her, I found  she had ideas of how she wanted her adult life to go.  I thought, “Rosalia might have those same dreams”  I’d always felt Rosalia would live with me until I could no longer take care of her.  My thought process was changing.  I’ve come to the conclusion I ‘d like Rosalia to share a home with 3 or 4 other adults who have similar disabilities.

Now, I am a Special Education teacher and I owe a great deal of it to my daughter, Rosalia.  Watching her grow has been a wonderful learning experience.  No matter how small the gain, it is always wonderful to see.  Not only has she touched my life, but she has touched the lives of her new dad, my entire family and many friends.  As the years have passed,  all the questions I’d had when she was born have started coming clear.  She has taught me so much and I thank God every day I have such a wonderful child