When I was 14 years old and just entered high school in the late 1960's the nun's tried to get us involved in community service. They would take us in groups to the Red Cross where we would roll bandages (can you imagine!) and we would go to nursing homes and read to the elderly people. These types of activities were enjoyable to me, but I sure didn't find those activities very compelling.
That changed the day that they took us to Fircrest. Fircrest is the State School for the Mentally Retarded. At least that's what they called it then. Today it's just Fircrest and the conditions I will describe, thankfully, no longer exist there.
When we first arrived I was struck by the long low buildings that I later learned were used as army barracks in the 1930's. There seemed to be 20-30 of these buildings on the expansive grounds. As we entered the first building, the stench that hit when the door opened seemed as though it were a solid wall rather than air. It smelled of a combination of urine, feces and vomit. The second thing was the sound. Moaning, yelling, grunting, but interestingly enough, no crying. Then my eyes focused in on the children in the huge room.
Lying on the floor with blankets rolled into dividers were about 20 children of various ages probably 8 or 9 years old through 20 years old. These children were lying on the floor in between the rolled blankets. Most of them wearing just a large cloth diaper and hospital gown. Many of the children were bent in odd shapes, which later I learned they had Cerebral Palsy and their limbs were not broken as I had at first thought but contorted due to their CP. Many of the children were having seizures. The few caregivers that were there seemed oblivious to the "fits" as they called them. And some of the children seemed to have several while we were standing there.
The guide then took us to other buildings where we saw some older "children" who were obviously mentally retarded, but were able to walk and talk and they seemed very bored, but very happy to see visitors and wanted to touch our hair and clothes.
One of the buildings had the "water babies". I thought that sounded kind of pretty and expected to find angelic little children floating in a swimming pool. What a shock to find out what a "water baby" really was. These were babies with hydrocephalus and since the shunt had not been invented yet, these were babies and children with heads with 25" and larger diameters. Their heads were so big that it took 3 people to change their sheets because if someone moved the child without help they could snap their necks. It usually took 3 people to lift the child because their heads were so heavy. Oddly enough there were a few chldren that had lived 10 years and could talk. It was very surreal. We were told that their heads would just finally "explode" from the build up of the fluid.
As we left that building I was beginning to wonder if there was a place for me, when we walked into the buiding that has forever changed my life. By that time I was getting used to the smells and the noise, so I don't recall either when walking into the last building.
Same large room as the other buildings but this one was lined in cribs. There was a long row along each wall and a kidney shaped table and chairs in the middle of the room. In each bed was a baby with Down Syndrome. The children in this room ranged in age from birth to four. I remember walking away from the guide and the group of my friends and walking down this long row of cribs and looking at all these babies and thinking that they were the most beautiful babies I had ever seen.
There were between 20 and 30 babies in this room and what struck me was that there wasn't one noise. The ones who could sit up were rocking back and forth and flicking their hands. The babies who weren't sitting up were just lying there.
I listened to the guide talk about these babies who would never walk, never talk, never feed themselves and that their life expectancy was 13 years old.
And then I saw her. A little blue eyed blond baby girl sitting in her bed watching the shadows on the walls. This was Coleen.
I asked if I could hold her and they said sure. There were so many cribs and no space between them that they had to move several down in order for me to get beside her crib to let the side down.
From that moment I spent the next two years coming to Fircrest as many weekends as I could convince someone to drive me the 20 miles from my home. My parents could not understand why I was drawn to these babies.
My parents were foster parents and from the time I was 10 until I turned 19 my parents always had a healthy newborn in our home. Until I had that first day at Fircrest I was always pushing my parents to adopt one of the baby girls so I could have a sister. (I had 4 brothers.)
Once I met Coleen I began pushing my parents to adopt her. Her parents had given her up at birth and I had talked to the administration and was told that yes, it was unheard of , but she could be adopted if someone wanted to.
My parents told me that people put children like her in institutions for a reason. You don't bring them home. I wasn't convinced.
When I started visiting Coleen, she wouldn't look at me, couldn't stand, couldn't talk of course, and actually I didn't hear her cry.
I would sign in each week as a volunteer to work in her building, but soon it was obvious to the two women who worked weekends in her building that I was there to be with Coleen. I would help with the other kids, but as soon as all the diapers were changed or babies fed, I sat in the only rocking chair holding my girl and singing and talking to her.
The women who worked there would chuckle at me when I would stand Coleen up against the wall and try to get her to stand there alone. She would flap her hands and make a distress noise, but I persisted and it wasn't too long until I could stand her up at the wall and move back and put my arms out to her to beckon her to come. Her little knees would lock and she would screech in protest, but she began to trust me and although it took a long time before she would take a step it didn't take too long for her to reach her arm out for me to pick her up.
Meal time was structured for the two workers not for the kids. They were brought from their cribs and put in chairs around the kidney shaped table. One worker would bring the kids and tie them with a large cloth diaper around their waist to keep them upright in the chair. The other worker would have one bowl and one spoon and she would start at one end of the table shoving the food into one mouth after another and then go back to the first child with their second bite. The other worker would then start taking the children out of their chairs and put them back in bed and bring the next round of kids. Bottles were propped - some could hold their own.
They laughed at me when I would sit her down at the table and bring baby food from home and give her a spoon while I would guide her hand from the bowl to her mouth. "Even if you teach her, we can't take the time to let her feed herself. She only does this when you're here" And when I would hold her in my arms and feed her bottle, they would say the same thing, "You're the only one that has time to do that. The rest of the time it's propped."
None of the children had their own clothes. They only had cloth diapers and hospital gowns. So on the weekends I would bring my doll's clothes and dress her in them so I could take her outside. (I had a Patty Play Pal doll that wore size 3 clothes that my mom had made a small wardrobe for me for Christmas. )
By the time I had been there for two years Coleen was walking, feeding herself and she had one word. "Mama". The workers assured me that word was reserved for me because she only said it when I came or when she was rocking herself to sleep at night.
The staff was amazed at her progress, but they said that it was easier for them before she was doing those things. Even as a teenager, I thought that was a very sad statment.
When I would get there, and she saw me coming across the room, she would sit rocking in her bed and start chanting "Mama, Mama, Mama." Then when I would walk up to the crib she would squint her eyes, smile and reach her arms out to be picked up.
One day when I came home from school I was told that there was some very sad news. I was told that Coleen had died suddenly. I demanded to go to Fircrest to see her, I wanted to go the funeral, I wanted to know why she died. I was told that there was no funeral beause she had no family and that she was buried already.
I buried her in my heart.
Some how my life went on. I got married, had two babies of my own and as those two kids left home I started foster care. My pictures of Coleen (there are only 9 of them out of my friend, Christie's Brownie camera) were always in my bedroom and everyone who knew me, knew the story of Coleen.
When I started foster care I asked that in my profile that they keep at the placement desk that I would really like to have a child with Down Syndrome. I did get placed with my Jacob 6 years later. He was 6 months old.
As Jacob neared his fourth birthday, which was the age that Coleen died, I had the overwhelming need to go back to Fircrest to see if I could find out why she died and if there was a grave I could go visit.
Fircrest Administration was very understanding and respectful when I shared my story, but they told me that if she died in the 60's it was way before that information was computerized and there would probably be a paper record somewhere but all the information was archived.
When they saw my disappointment they referred me on to a kind man, Bill, who said that he would make a few phone calls to people who were around back then and see if there was anyone that remembered Coleen. I gave him her full name and birthdate and left feeling like there was little to no way I would hear any information.
Six weeks later I got a phone call from Bill. He told me that he might have located someone who remembers Coleen, but could I send a copy of the picture of her so she could be sure. I sent the pictures to Bill and waited.
Bill called a week later and said, "Call this number and ask for Linda, I think she can help you."
So I called and started to explain to Linda who had answered the phone, "Kitsap Residences", and suddenly she called out, "This is the woman looking for Coleen!" I said, "Excuse me?" She said, "Coleen's here!"
Well, of course, I thought it was impossible. I thought it was a very cruel joke, but Linda insisted that they were very sure this was the same person.
The decision came from that phone conversation that I needed to go the 60 miles to Port Orchard, WA to see if this person they insisted was Coleen, was truely MY Coleen.
The first visit with Coleen – May 9, 2005
For the few days leading up to my visit the staff at the agency that cares for Coleen would call me with things that I needed to be “prepared” about.
For example they said she might not tolerate more that two minutes. She hasn’t had any visitors for at least the 15 years that she has been connected with this agency. No friends, no relatives have come to find out what happened to her.
They told me that since she is non-verbal she might just walk into her room and shut the door – visit over
She might walk me to the door – visit over
She might spit in my face – visit over
She might slap me - visit over
And then there was the picture that came that was meant to “prepare me” for what I would see. This picture was the best one they could get of her and it was dreadful. She was mostly bald with a few wisps of hair, but that wasn’t the worst part. Her eyes, her face were the saddest I’ve ever seen, and I’m a person used to sad faces on all the foster children who’ve come to my home over the years.
But the exciting news was that it was my Coleen! No doubt in my mind.
Over the next few days, including Mother’s Day on the day before my visit with her, I had lots of preparation from my family. My younger twin brothers and their families were at my house for Mother’s Day and they told stories of me begging my mom and Dad after Mass on Sundays to take me to Fircrest. I even told them I’d walk home, but of course they would come and get me.
Monday was agonizing – waiting for the time the babysitter would arrive so I could leave. I walked across the Bremerton ferry and took the foot ferry to Port Orchard where Debbie met me. Debbie has worked at the agency for 7 years and was chosen as my chaperone to visit Coleen because they felt she knows her best on a day-to-day basis. Debbie worked for 5 years - 40 hours a week with Coleen and now Debbie is the supervisor of the building that Coleen’s apartment is in.
But, apparently there was more preparing me to be done, because the 20 minutes ride from the ferry dock to Coleen’s apartment was spent telling me what to expect. Things like – “In all the year’s I’ve known Coleen, I can count on one hand how many times she has hugged me or someone else that works with her. “ And “ In all those years we haven’t been able to get her to sit still for a picture or catch her smiling”. I believed that one already because of the picture they had sent me. And she reminded me that she is non-verbal.
She also glanced at the photo album of the 11 pictures I had of Coleen and me from the 60’s and told me that Coleen doesn’t look at books. She doesn’t look at pictures. I told her that was ok because all I wanted was for her to have these eleven pictures of her childhood. That one day back in the 1960’s of my friend, Christie Brown, taking pictures of Coleen and I together are the only pictures Coleen has of her childhood. I had blown up the eleven pictures to 8 ½ x 11 and put them into an album with some extra blank pages that I hoped would be filled over time with more pictures of her. I had brought my Polaroid camera in hopes that I could leave that day with one of her and me together again.
I told Debbie that I would take her lead and if she thought Coleen had had enough of a visit that I would go.
By the time I walked into the apartment I was “prepared enough” to only hope for a glimpse of Coleen and then be whisked back to the ferry.
When I walked in, Coleen was in her room sitting on the bed, legs straight out rocking back and forth. She had a wad of clean socks clutched to her chest and she was looking at the wall.
Debbie said, “Coleen, I brought you a visitor.”
Coleen didn’t look up she just rocked faster. I walked into the room and stood near the bed. I could barely find my voice to say, “Hi Coleen”.
I started just talking softly about the pink tennis shoes she was wearing and then started telling her that I knew her when she was a little girl and that I brought some pictures for her to look at.
I opened the photo album to the first page. I said, “Coleen, look at you! This is when you were just a little baby girl.” Her eyes darted just barely noticeably and then, away again. “Look this is when you were a little girl and now you’re a big girl, and this is me when I was a little girl and now I’m bigger too.” Her eyes turned towards the book, though her face was still towards the wall. “Look, weren’t you a beautiful baby?!” She stopped rocking and turned to look at the picture for just a few seconds. Debbie gasped! Coleen tried to turn the page, but she couldn’t she started getting anxious.
“I’ll help you,” I said and turned another page. Coleen bent over the picture looked up at me, then at Debbie and smiled. The same little crooked smile she had 38 years ago.
Then as quickly as it appeared it disappeared and she started to rock.
“Keep talking to her, she’s listening”. Debbie barely whispered.
So I spoke on about the pictures and that day. How we went outside for a walk and how she was so little that her legs got tired and I picked her up and carried her. And how we used to play and how baby Coleen used to hug me. I showed her a picture of us with her head on my shoulder and her little hand hanging onto the lapel of my coat. She looked at that picture and studied it. Then she looked up and smiled. “That makes me smile too, I said. – Suddenly the hand came up and she slapped me in the face and she started rocking violently again.
“I think that’s enough pictures for now. “ I said
Debbie suggested that she make some coffee and see if we could get her out of her bedroom and into the dining room. Coleen wouldn’t come out so after a few minutes I went back in to talk to her. This time I stood at the foot of her bed and her feet were pointing off the side. I had my hands on the footboard while I spoke to her.
I started talking again about when she was a little girl and how I used to love to play with her. She kept rocking but her hand left the wad of socks for a fleeting second and came to rest on my hand. Then she pulled back quickly. I kept talking. A second time she put her hand on mine this time for a few seconds longer. I could hear Debbie shifting in the doorway to Coleen’s room trying to get a better look. I put my hand out, palm out and said, “Will you hold my hand, Coleen.” Several seconds later the little hand came up and rested on mine. I felt like I had a handful of gold! Debbie let out a little gasp and Coleen spit at Debbie and then at me.
I backed off and told her, it was ok, and I’ll go check on the coffee. I walked out to the dining room with Debbie and she asked me how I was doing. Although I was emotionally exhausted I was more interested in what she thought about Coleen’s advances toward me and the smiles we had seen.
“I don’t know what she remembers, but it’s obvious she’s remembering something about you, or the pictures, or that time. Keep talking to her; I think it might be your voice. She seems to recognize your voice and she’s really listening.”
I walked back in again alone and walked to the side of the bed. I asked Coleen if I could sit down, and since she didn’t spit at me, I took that for a yes. I sat on the edge with her legs stretched out beside me. She was rocking again and seemed calm so I started talking to her.
“Coleen, I have loved you for a very long time. I loved you when you were a baby, and I love you now that you are a big girl.”
“There was a very long time when I was very sad. A long time ago I lost you.” (Her rocking slowed) “I couldn’t find you. I looked everywhere to try to find you. I’ll bet you were very sad too.” (She stopped rocking and looked at me out of the side of her eyes with her head still bent toward the wall)
“But I kept looking for you and then I found you and now I’m very happy!” At that moment she turned her head toward me with a big smile and threw both hands up in the air like she was saying ‘What a great ending to the story!’
But just as quickly the hand came up again and hit me and then the spitting started. I rose slowly off the bed but stayed right next to the bed.
Debbie who had been standing in the doorway watching came into the room and told Coleen that spitting on Linda wasn’t very nice. Coleen’s rocking slowed back into her comfort speed.
I sat down on the bed again and laid my hand on Coleen’s ankle and put another hand on her back. I told Debbie, “I have a dilemma about something. Coleen didn’t know me as Linda, she called me “Mama”.”
Coleen stopped mid-rock and bent over to my face and studied it and then she said, “Bama”! Then she started rocking and chanting, “Bama, Bama, Bama, Bama” She smiled, she paused long enough for me to say, “That’s right Coleen, Mama” She started chanting again, and I started chanting with her. It went on for several minutes.
Debbie’s lower jaw hit the floor. When she could speak she said, “I’ve heard her do this before. But we didn’t think it meant anything! I used to work swing shift and help her to bed. That’s what she says when she’s going to sleep! I’ll bet after you stopped coming that became her way to comfort herself!”
Within a few minutes, Coleen had stopped chanting and was rocking steadily and more slowly again. I walked into the kitchen with Debbie to regroup. I looked at the clock and it was almost time for me to leave to catch the ferry as I still had a three-hour journey home and I needed to be there to put Jacob down for the night.
I asked Debbie about the Polaroid Camera. I was really hoping to just get a shot of Coleen and myself next to each other for her photo book. Debbie thought it was worth a try but reminded me about the difficulty of getting her to hold still and catching a smile was probably too much to hope for.
It was Coleen’s dinnertime and she was called to the table. She sat down in her chair and grabbed her spoon with the palmer grasp of a 12 month old, bent her head to her plate and shoveled in a mouthful. Her chewing was practically non-existent as she mushed the food between her tongue and her palate.
When she was about half way through, Debbie said, “Coleen, let’s get a picture of you and Linda.” No response, she just continued eating. Debbie and I joked about her priorities being straight – food first, pictures later.
Debbie glanced at the clock and said “If we’re going to do this, we better do it now”
At the risk of getting cooked carrots spit in my face, I knelt down next to Coleen’s chair and said, “Just go ahead, as long as we’re together. I just want both of us in the frame together.”
“Coleen, let’s take a picture of you and Mama.” Debbie said. Coleen put down the spoon, put her cheek right next to mine and Debbie shot the picture. “Take more,” I said between clenched teeth…Debbie got two more pictures before Coleen pulled her plate back in front of her and resumed eating.
Debbie and I glanced at the clock and Debbie said, “Coleen, we have to go now.” Coleen threw the spoon across the room and stomped her foot. Then she dropped her head to her chest in a typical two-year-old pout.
I knelt down beside her and she slapped me. I grabbed her hand as gently as I could and said; “I told you that I was so sad until I found you. I’m going home now, but I promise I’ll be back. I’m not going to loose you again.” She smiled, stuck her hands into the food and started eating again.
Finding Coleen again has been one of the biggest blessings of my life. Since that first visit, she has spent weekends at my house, has spent Christmas with us and even took her very first vacation ever with us.
She still has only one verbal word, "Mama' which she uses alot, and when I disappear from sight she grabs my 12 year old's hand and pulls her down the hallway chanting, "Mama, Mama".
But what she has done for my life is give me the drive to save at least one little girl from having the life that Coleen had. I couldn't save her, but I can find one little girl with Down Syndrome and pull her from a life in an institution and give her a family that loves her.
This is my song for Coleen...it's a song from that era sung by Chicago.
You know our love was meant to be
The kind of love that lasts forever
And I want you here with me
From tonight until the end of time
You should know, everywhere I go
Always on my mind in my heart, in my soul
Baby, You're the meaning in my life,
You're the inspiration
You bring feeling to my life,
You're the inspiration
Wanna have you near me
Wanna have you hear me saying
No one needs you more than I need you.
And I know yes I know that it's plain to see
So in love when were together
And I know that I need you here with me
From tonight until the end of time.
You should know,
Everywhere I go
Always on my mind
In my heart in my soul
You're the meaning in my life
You're the inspirtation
You bring feeling to my life
You're the inspiration.
When you love somebody
Till the end of time
When you love somebody
Always on my mind.