> When I first started blogging, I knew that I would at some point tell about each of my kids. I’ve got six, so I won’t talk about all of them in one fell swoop. That would take hours! I’m going to start with Jenna. I’ve been wandering through the Dooce community reading questions that folks have, and reading all the answers to those questions. One of the questions touched me like none of the others did. One person mentioned that she had a Downs Syndrome child and wondered if anyone else had special needs children and if so, how did they cope with that. It was very interesting to me to read some of the struggles that folks have because they are struggles that I am all too familiar with.

I met Jenna when she was about 10, but she became a permanent structure in my life when she was 15. She has Cerebral Palsy, a very severe case of it. When she first came to live with me she was semi functional, in that she could hold her own sippy cup and drink for herself. She could THROW the sippy cup across the room if she needed more to drink and you didn’t hop to it quickly enough. She could eat finger foods by herself. She could crawl anywhere. She could climb on and off the furniture. She could walk as long as we helped to brace her. But that was the extent of her abilities. She couldn’t dress herself or take care of any of her personal needs. I thought that she would live with me forever.

Jenna is the sweetest girl you could meet. She loves to snuggle and used to crawl off the couch to come and climb up on my lap just to snuggle. If she was mad at me, she would crawl across the floor and begin pulling books out of the bookcase one by one. She would look at me and make sure I noticed her, then pull the books onto the floor. She normally did this if I were trying to do dishes, or vacuum or something other than snuggle with her. 🙂 If she wanted something on the kitchen table or counters, she could pull herself up to a standing position to try and reach it, but had balance issues so she couldn’t stay up for very long without falling. We had to watch her like a hawk because she could get around pretty fast. She went to a school for the mentally and physically handicapped and did very well with the physical therapy…it kept her strong. Well, as strong as she could be given her circumstances.

She taught me a lot about unconditional love. She taught me that you don’t have to give birth to a child to love that child like only a mother can. She taught me that you can be happy no matter what your situation in life is. She always had the hugest, crookedest (yes, I know that’s not a word) smile for me. I knew that she loved me. She knew that I loved her. My husband and I would take turns with nights out because even though you love a child, you still have to be able to take care of yourself in order to function for that child. Our other kids, Jenna’s brother and my four girls also learned from Jenna. They would take their turns sitting with her, helping to feed her, playing with her. Whatever she needed. ALL the kids were very protective over Jenna.

Jenna’s favorite thing to do was eat. She loved food. She would eat anything. The saying at our kitchen table if the kids were complaining about what was for dinner was, “If Jenna won’t eat it, you don’t have to eat it.” This was always followed by groans and complaints. Jenna was a very light sleeper and once she was down for the night we would all tip-toe so as not to wake her up. It was common to hear, “If you wake her up you have to sleep with her.” Our lives revolved around Jenna and her care. And no one grumbled. She had kisses for everyone. It didn’t matter who walked into the room, she would start smacking her lips together “asking” for a kiss. If you were sitting next to her you had to hold her hand. She would have it no other way. Hold her hand, or she would be on your lap. She demanded the attention. Queen of the castle.

As I said earlier, she attended the state school for the mentally and physically handicapped and received physical therapy every day. When she turned 18, we began the process of trying to arrange for adult day care. We knew that she could only go to the school until she turned 21, and we knew that the red tape it required to find a good day care was horrendous. And it’s good we started when we did because even with all of our planning ahead we barely found a spot for her once she was no longer allowed to go to state school.
This is where we started our downhill slide. The program she was in is an excellent program, and I can bear no ill will towards them, but she began digressing as soon as she was not at state school. She no longer received PT. At her adult day care there were some very mobile adults. And they were a handful. I visited there frequently, especially when she was first getting settled in. It was too easy to let Jenna sit in her wheelchair because she was quiet and didn’t demand the attention of the others. So she had no stimulation. She began having trouble eating and within 6 months of leaving the state school she had dropped 25 pounds. When your beginning weight is 99 pounds, 25 pounds is far too much to lose. The part that I struggle with even now, is that I didn’t notice the weight loss. I bathed her every day and did not notice her weight loss. How is this possible? The “what ifs” and “if onlys” haunt me still today. Her cheeks remained full. She was always skin and bones, and I didn’t notice 25 pounds of weight loss! I was her mother! I should have noticed! I did notice her strength waning and I was fairly certain that it was from the lack of PT. I would work with her in the evenings trying to keep her legs flexible. I would do some of the exercises with her that the state school had shown me while she was still going there. But it wasn’t enough. When we would walk her down the hall to take her to the bathroom, or to her bedroom, she began stumbling more and more. She began falling off the chair, off the toilet, off the couch…she was losing her ability to hold herself up. Every day after adult day care was done, she had an inhome care giver that would come in and feed her dinner during the two hours between day care and when I got home from work. It was the same every day, “I can’t get her to eat.” So I would hold her in my lap and feed her. Make sure she was getting food down. I couldn’t understand why I could get her to eat and no one else could. This wasn’t difficult. I felt like they just didn’t want to. Maybe the inhome care giver people didn’t get paid enough to care.
Then the nightmare began. Three weeks before she turned 22, it was Mother’s Day. I got up and went into her room to get her out of bed, get her dressed, and get her fed. Only I didn’t make it to any of those things. She was lying on her back, unresponsive, staring at the ceiling. My husband was right there with me and we tried to get her to respond. Nothing. She was limp as a noodle. I whisked her up in my arms and headed for the car. We took her straight to the emergency room where she was in this catatonic state for two hours. I have no idea how long she had been like that before I arrived in her room that morning. They did every test under the sun to try and find out what was wrong with her. All normal. Everything came out normal. When she came out of this trance-like state she was in, they sent us home. We cried most of the day. We didn’t know what was wrong with her. We knew there was something wrong, but nobody could tell us what it was. We suspected she was having seizures again. This was an issue with her when she was a small child…had a grand mal at 4 years old, and then would seize any time she had a fever after that. She was on seizure medicine until she was 16. At that point she was not affected by them. Two days after our first ER trip we received a call from her inhome care giver saying that she was gurgling when she was trying to feed her. So my husband and I both left work and went home. I began feeding her and she was, indeed gurgling. So back to the ER we went. Again, test after test. This time they did a chest x-ray to make sure she didn’t have pneumonia. Everything was clear. They sent us home. We cried all the way home. She was becoming more pail. More fragile. The light in her eyes was gone. She no longer smiled. She no longer begged for kisses. She was no longer able to crawl across the room and sit on my lap. I carried her everywhere.
Two more days passed. This time we didn’t receive a call. The caregiver decided she would try to get it taken care of on her own. When we got home, Jenna was gurgling again. Another trip to the ER. Our third in five days. More tests. Another chest x-ray. Only this time, the doctor requested an abdomen x-ray. That’s when they found the impaction. Her bowel was completely impacted. The x-ray looked like a polska kielbasa sausage from her pelvic floor to her stomach. It was why she was gurgling…there was no room for food to go into her stomach. How could this have happened? I was there. She had been pooping (sorry to be gross). She was in such a weakened state, though, that she could not get everything out that needed to be expelled. So she was impacted. They admitted her to the hospital. They wouldn’t let us stay. They made us go home. We cried all the way home. We cried all that night. We went to the hospital first thing the next morning and sat next to her hospital bed. We cried there, too. We both felt like it was the end. That she would be leaving us. It was next to impossible to bear. Two days of being in the hospital and they sent her home.
Jenna’s case worker was fabulous during this time working through the red tape. Shortly after we got her out of the hospital, Jenna had enough “points” in the ridiculous point system the state uses for eligibility for placement into a home (don’t get me started on the “system”). And the search began for a home that had the medical staff required for someone with Jenna’s needs. And they found a home in June. Mark and I went to check it out. I cried. I could not send my child there! You know how you just KNOW when something is not right. We drove away from that place feeling utterly hopeless. Knowing that our girl was going to die if something didn’t happen, and happen fast. It’s funny how God knows when you have had all you can handle. As we were driving home from that place, Mark’s phone rang. It was Jenna’s case worker. There was a home about 40 minutes from our house (the place we had just looked at was nearly two hours away). But it wasn’t going to be ready for any clients to move in until September. So Mark called the proprietor and as luck (or the grace of God, whichever you want to believe) would have it, the proprietor was at the house and said we could stop by that day. So we adjusted our route and headed there. The moment we met Mandy we KNEW that she was the one. She was the one we could trust to take care of Jenna. Her and her husband had a group home with 8 clients…all older women. They had just purchased the house across the street and were renovating it to make it handicapped accessible. It had three bedrooms and would only have 3 girls in the house. It was perfect! Jenna would have around the clock medical supervision. She would have two girls her own age, in her own circumstance in life living with her. And yet, it was three and a half months away. Could I keep her alive for three and a half months? I didn’t believe that I could. We cried all the way home from our visit with Mandy. Mark cried with relief. I cried because I really believed Jenna would not make it long enough to move into the home. My faith was really dwindling. Every day I watched her get weaker. Every day I watched her lose that will to live just a little bit more. Every day I held her in my arms and cried while I tried to get her to eat. Every day a piece of my heart broke a little more. You should know that I am not a crier. It’s not what I do. It is not how I deal with my emotions. And yet I cried that summer more than I have cried in my whole life combined.
And the tears weren’t only because I was certain I was going to lose Jenna. There was a horrible guilt. How can a mother send her helpless child to a place full of strangers? I couldn’t be there to protect her from bad things. And I’ve read the horror stories of group homes. I’ve watched 20/20. I’ve seen Dateline. How could I send her away for total strangers to take care of? It was horrible. All but one of the other kids had moved out of the house, or were in the process of moving out, and that was alright. That is the way it is supposed to be. Parents teach their kids to be responsible adults and then kick their little asses out the door. But Jenna was special. Jenna couldn’t take care of herself. Jenna couldn’t even speak up if something bad happened. She couldn’t even tell me if I needed to rush in to protect her. I had to trust someone that I didn’t know.
September 4, 2007. That was the big moving day. We took her up there and I hovered. Mandy kept trying to assure me that everything would be alright. She went through, in very great detail, the procedures that would be followed in the house. She was very patient with my questions. She is truly an angel. She told us we could stay with Jenna as long as we wanted, but gently urged us out the door to begin this new phase of our lives. So we left. And I cried. After two weeks Jenna had gained 7 pounds! That was a miracle. I had been trying for 3 months to put weight onto her and nothing! No progress. Just digression. And two weeks with Mandy and her staff and she was up 7 pounds. I breathed a little. And, yes…I cried. After two months she was up 15 pounds. Just over half of what she had lost. We saw her every week. When I was in the area on business, I would stop by unannounced in the middle of the day and I always found one of the workers snuggling with her on the couch, or painting her toenails, or brushing her hair, or holding her hand and talking to her. And I cried. Only the tears were different. There was a relief beginning to spread over me. I was beginning to unwind and realize that there was someone who could love Jenna and give her a good home. I didn’t have to feel guilty for dumping her off with perfect strangers. I did the right thing for Jenna. She was happy. I could see that. When we go visit her now, she doesn’t light up to see me. That makes me a little sad. But she DOES light up when one of her care givers walks into the room. And that makes me happy!! She lives in a loving home. And that gives me comfort. She is back at her normal weight…99 pounds. We used to tease her about being the 100 pound weakling and she would laugh and smile her crooked little smile. When they told me she was back at 99 pounds I said, “Jenna! You’re a 100 pound weakling again!” And she smiled. And I cried!
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