Another Update

Since Chelsea is approaching her 18th birthday in August, this seemed to be an appropriate time for another update. She continues to thrive in ways I could never have imagined. She went to a school dance with a young man; she looked so beautiful in her dress. She has learned to speak very clearly and her behavior is nearly perfect. She looks healthy and happy, and I know she is loved. We got together with our extended family and held a swim party for her and then out for dinner. We all had a great time and got lots of Chelsea-hugs. I miss her every day, but I know that she is so much better off with her foster mom. Just because I love her with all my heart does not mean that I am capable of giving her the best care, I clearly was not. There are times I feel guilty for turning her over to her foster mom, but then I just think about how well she is doing. She is so much better off now, and no matter how much I miss her, I have to remember that I did it for her best interest. Bottom line - not everyone has what it takes to raise such a special child, and I readily admit I don't have what it takes to do it right. Some folks (who obviously didn't have a real high opinion of me) had indicated that they thought my life would continue to be miserable even if I didn't have Chelsea, I guess they were insinuating that being a tired, depressed, bitter person was just my nature and Chelsea was my excuse. I can admit that the first year after she left was pretty bad. I was still depressed, my marriage still in trouble, and my finances in an even deeper hole than before. Add to that the guilt I felt for having failed to be strong enough to take care of Chelsea, and it was a pretty rough road that I wasn't sure I would come back from. Over time, however, life has gotten better. I've adjusted to life without her, I have been in counseling since she left, and I have started to live like a normal middle aged woman. It just took awhile to find out what that even meant. I have just gotten to the point where I feel okay about running to the store late at night, there's still that little tiny bit of feeling like I can't do that. I never experienced any burst of a sudden sense freedom, just a laboriously slow return to something close to normal. Finally, we are happy, and Chelsea is happy. And after all, wasn't that the point?

The Right Thing To Do

It's been awhile since I've posted, mostly because between taking care of Chelsea and my escalating health problems, I just chose not to make time for blogging. Depression also played a role in my decision not to blog, I just couldn't deal with one more thing that needed done. I decided to come back today to let all of you know about some major changes that are taking place. Over the last few months I escalated my attempts to get some sort of help caring for Chelsea. My requests were always met with a negative response. It seems there truly is no help in the rural area I live in. I spoke with the local chapter of the Down Syndrome Association and, nope, nothing like that here. I called Job and Family Services, sorry, no help here. One evening, I sat down and really took a long, hard look at the situation. I had just come from the doctor, where I was informed that if I didn't do something about my stress level, I would soon have either a heart attack or stroke. Great advice, but how does one do that under these circumstances? That was the question I had to answer, and answer quickly. I looked at my struggling marriage, my 18 hour workday, my house that never gets clean anymore, and that sweet child who doesn't get the attention she deserves, and made a hard decision. I called Child Protective Services. To cut to the crux of this story, Chelsea is being placed in foster care. Her new foster mom is someone who is a special education teacher, a trusted friend and who Chelsea loves intensely. She will be living a block away from me. She will have a brand new set of bunk beds for sleepovers and a new wardrobe. She will be spending a week at the beach every summer. Sweet Chelsea is moving on to a new and wonderful life, the one she should have had from the day she was born. I have cried until I can cry no more, but I am comforted by the fact that no matter how hard it is to give her up, it is the right thing to do. After some time has passed, I think I can then start to put my own life back together, although I don't know what that life will be, I will manage, and I will know that Chelsea is safe and loved. For those of you who have been supportive and understanding throughout the time of this blog - you are good people and I thank you from the bottom of my heart. Your support is so important to those who are struggling, and I know I'm not the only one. I was just one of the few willing to put my struggles out there for all to see. To those of you who were judgemental and full of condemnation, well, what goes around comes around; I wish you well. I may be back with updates on Chelsea's life, or I may not, but either way, I did the right thing.

Another day in paradise

I woke up to a beautiful morning this morning. The sun was streaming in through the window, a pleasant breeze bringing me the scent of fresh air. In my state of not being quite awake, I thought "What a nice morning, maybe we'll go have some breakfast somewhere." Then I woke up. Then I felt the sadness wash over me. I remembered that there are no more pleasant breakfasts with hubby at the local diner, no more mornings spent cuddling and enjoying the sunshine. No more mornings spent planning our future over coffee. This is our future, right here, right now. Do I regret giving up my future to insure that Chelsea has one? Not a bit. Do I desperately wish there was another solution? Absolutely. During the few short weeks my son had Chelsea, he signed her up on the group home waiting list in an adjoining county. The case worker told me that he told her point blank that he would not take care of her until she is 18. What a tragedy that this loving little girl is the subject of so much controversy, that her own father doesn't want to take care of her. It is the one thing that makes me ashamed of my son. I pray daily that some solution that is truly best for all, most of all Chelsea, will come to light. No matter what the cost, I will not abandon her or put her in a bad situation just because I want my life back. I will continue to love her, take care of her, and then cry in private for as long as it takes to find a solution. All of you who pray, please pray for us, for our family, for Chelsea. She deserves the best, and I am not capable of giving her more than mediocre, so please pray for something wonderful for her.

Chelsea's Homecoming

Well, on Tuesday evening, Chelsea came home without much fanfare. My son dropped her off at around 7:30 pm and she had school the next day. She sat in her room watching a favorite movie for about an hour, and then asked me what time her dad was coming back. When I explained to her that she was back with us now, that her time with dad had been just a little vacation, she smiled and jumped under the covers. She was asleep in five minutes. I had no idea that he had not explained anything to her. She had not had a bath, and he didn't bring her clothes until 10:30 that night, clean but thrown unfolded in a box. Not my idea of preparing for the first day of school. That's just not how I live. I have everything ready the night before, baths over with, clothing laid out, etc. I like a nice, calm, organized morning. To make matters worse, I overslept the next morning, so it turned into a mad dash to get ready and get out the door. Chelsea took it all in stride, I, on the other hand, was a very unhappy camper.

For those who don't know

I often get get comments pointing out how depressing my blog is at times. I am quite certain that many find it to be a "downer" when perhaps they were looking for something uplifting. I thought maybe this would be a good time to bring to light the reason we have Chelsea in the first place, for those who don't already know. Perhaps knowing how we came to be Chelsea's guardians will explain why our experience is so different from those who are parenting a Down's child by choice. It is a rather long story, but I will summarize it.

On July 13, 1999, Chelsea's baby sister was murdered by her mother and step-father. After much emotional trauma, dealings with Child Protective Services, and two murder trials, my son was given custody of Chelsea by the courts. He was a newlywed at the time, and the combination of the murder itself and having a disabled child placed in their lives with little warning caused their marriage to disintegrate and they divorced. My son tried valiantly to care for Chelsea on his own, but amidst his grief over his murdered child and his divorce, did not cope well. Chelsea was not thriving and learning as she had been before his wife left. In order to protect Chelsea and give her some kind of chance in the world, my husband and I agreed to take her until he could get his life in order. It has been years now, and he still cannot seem to cope with her. I understand this, because I can barely do so myself.

I had only been married about a year when Chelsea came, having been happy and enjoying my life for the first time in years. Being middle-aged and suddenly have a disabled child to care for does not lend itself to happiness. I had always looked forward to that time in life when my boys were on their own and I could once again get to know myself as something other than someones caregiver. One event, on July 13, has had such a ripple effect in all of our lives, but I cannot let go of the thought that Bethanie's murder not only ripped a part of my heart out forever, it also cost me my happiness. If you really take the time to think of the emotional dynamic that takes place every day as a result of these events, you may have a better understanding of why my blog is not all about the wonders and joys of a Down Syndrome child. I will love protect Chelsea until my last breath, but I can't help but mourn the lost years of my life, just when I had started to enjoy them. For more information about Bethanie and her murderers, see my blog "Never Another Child" http://neveranotherchild.blogspot.com/ Thanks for reading.

I really hate summer

Yes, this is one of my dark, depressing posts. Sorry, but this is where I vent, and hopefully get some encouragement. School is out for the summer, which means 24/7 Chelsea. It also means my hubby is too depressed to do anything around the house, which in turn means I work all day and then come home to clean up and take care of things, then start my data entry job. Every year I have trudged through the summer, but this one is different. I am sick. I am struggling to get through every day at work, and hoping I won't lose my job, but it is so hard to keep going when I feel like I do. I have to try to stay awake to do the online work at night in spite of meds that make me sleepy. Then there is the stress of wondering how this will all turn out. The doctor suspects MS, and if that is true, what will become of Chelsea? How ironic to have sacrificed so much of my life to keep her safe, only to have to send her somewhere else. I don't know how much longer I can keep this up, folks, I really don't.

The Phone Call

Yesterday I got a call from the group home. Chelsea has been on the waiting list for about a year. They said they had an opening for her, but it was in a co-ed home. I turned it down. As badly as I want my life back, I couldn't accept the placement knowing she would be housed with grown men. I told them I would just wait for an opening at the all female home. Part of me wants there to be an opening tomorrow, part of me doesn't want there to ever be an opening. Sometimes I think I'm just crazy!

Trying to have a nice outing

We have been pinned up in the house together for so long, no money for gas, no money to do anything, no babysitter to go out by ourselves. Today we decided to splurge and spend the gas money to go geoaching http://www.geocaching.com Of course, Chelsea went along, because no matter what we do, she always has to come with us. The first location was a wooded area on a really steep incline and there was a pond at the bottom. I couldn't enjoy it very much because I was worried she'd roll down the hill and into the water. Ever try hiking while holding someones hand? The second location was in a cemetery, so I didn't have to watch her as close. The whole time we were looking for the cache she was babbling and shouting "I found it, look, I found a tree!" Another {ahem} enjoyable family outing. When I was younger and my kids were little, these kinds of outings were the norm, and I accepted it as part of being a parent. I can't seem to do that with her. Perhaps because even at 13 yrs old or 17 yrs old, she will always be like a 4 yr old, so no hope of it getting easier.Perhaps because at 48 yrs old, the last thing I want to do is raise a child, especially once who is eternally infantile. Perhaps because this whole thing was forced upon me.

Just plain annoying

Not much out of the ordinary today. Just the same annoying stuff. More asking to go to the bathroom, and I still have no idea why or how to stop it. Yesterday I left a pan on the stove and went outside, then promptly forgot about it. The house was filling with smoke and the alarm was going off. She sat on her bed looking at a book, a straight line of site to the burning pan, and never said a word. I suppose she would have sat there while the house burned down around her. I just don't know how to keep someone like her safe.

Camp?

Chelsea's camp packet came in the mail today. It is our ticket to an entire week of freedom, an entire week of being "us" again. It's a chance to rejuvenate ourselves, our marriage, our lives. The packet that I was so excited to get also came with a bill for $600. Chelsea has never had to pay for camp, it has always been paid for by the Lion's Club (God bless them). Her caseworker assured me she would be able to go this year. The logical part of me thinks this was probably just a clerical error, but the part of me that is so fragile and discouraged is terrified that we won't have that week we so desperately need. I've left a message for her caseworker, and I'll be praying for good news next week.

Lots of nothingness

Completely blah. She stayed in her room and watched t.v. all day. Of course there was the standard "Can I go to the bathroom?" and can I watch t.v.?", but those are routine anymore. Today was so blah I didn't even care that she kept asking me those things over and over again. I kind of felt like someone who is being held captive, not tied up, but knowing there is nowhere else to go. Just sitting and playing mindless games on the computer, answering her mindless questions with mindless yeses. Since the camp people (her teachers) thought she could take a shower by herself, I decided to give it a try, mostly because I could barely bring myself to do it. I watched as she lathered up her hair, not like I would do it, but she did okay. She did a good job of rinsing, much to my surprise. I actually started to hope that maybe she can do this by herself. I stepped back and watched as she tried to lather up a dry wash cloth. Reminded her that it has to be wet, stood there for the three minutes it took for her to process what I said, then watched as she washed her arms, then her bottom, then rinsed and said "Oops, I forgot my face". I informed her she just wouldn't be washing it, since she didn't wash in the right order. So much for my hopes. Fortunately for me, I was pretty sure she couldn't do it anyway, but a gal can hope, right? It is completely beyond my understanding how someone can take a shower every day for 13 years and still not know how to do it.

Just an average (not so fun) day

She starts the day by asking if she can go to the bathroom. I have no idea why she suddenly felt the need to start asking me that every single time, but she has been doing it for months now. I have told her to stop asking and just go. I have screamed at her to stop asking and just go. Nothing works, she just keeps asking. I've tried ignoring her in hopes she'd just go. That resulted in peeing in a teacup. So I just have to put up with the frustration of hearing that question several times a day for no reason. Most of what she says has no reason. She asks "Can I watch T.V.?" every single day. She has her own T.V. and has never been restricted from watching it any time she wants (except when she's grounded, which is rare). Out of nowhere she will say "You're my grandma". It has become one of many comments she makes that make me think "No shit, Sherlock" in my head. Of course, I can't say it, no matter how frustrated I am. I'm bracing myself for the nightly "Can I take a shower now? I love shower" that makes me want to scream. I think it bothers me so much because I hate shower time so much, yet she loves it. I know she has no concept of that, but sometimes it feels like she knows it and does it on purpose. We will be looking into group home placement in 931 days. Once that happens, she will be here a couple days a week, and we will have our life back. The group home is just a few miles down the road, so I can stop in and check on her on my way home from work every day. I can keep a close eye on her and get my life back. Only 931 days to go....

She's Back

She's home from camp. The first thing she said to me was "Look, I'm home, I got home today. I like camp". She informed me that she took a shower by herself. I'd be thrilled, because I despise having to shower her, except that I know full well that taking a shower by herself meant washing her face with the rag she just washed her bottom with. What are these people thinking when they put a kid like her in the shower alone? Do they think anyone wants to kiss a kid who showers in the manner that she does? I have tried for the past three years to teach her how to take care of her own hygiene; it's just not ever going to happen. I've tried being patient, I've tried rewards, I've tried being stern, all to no avail. All I get is wet, frustrated, and chronic back pain for my efforts. I would give anything to be able to afford to hire a caregiver just so I wouldn't have to shower her. I have hurt my back more times than I can count and I've come to the conclusion that I am just too old to do it safely. Unfortunately, I have no choice. She can't do it, I can't afford to pay someone to do it, so there we are. Maybe I'm being too uptight about the way she showers when left to her own devices. Maybe I shouldn't care so much about hygiene. I don't know. I don't know if I'm am doing any of this the right way, and there doesn't seem to be anyone to tell me, either.

The last quiet day

She'll be here when I get home from work tomorrow, my last night of peace and quiet. Unfortunately spent with both of us being sick, so no fun for us. I wish we had just a few more days of being "us" before we go back to being collectively "her". I did rent some movies to watch tonight. What a great night out, eh?

It's soooo quiet

Got her off to camp this morning and then I was off to start another hectic day at work. Hubby got sick in the middle of the day and I had to leave to take him to the Dr. It's finally evening. It is so quiet in the house that the silence is almost eerie. Who would think one kid could make so much noise, even when she's asleep? There's no T.V. noise, no babbling, no toy sounds, no rustling of the bed sheets, no snoring like a freight train. All I can hear is the singing of birds, the occasional passing car, a dog barking in the distance. I never hear those things when she's here. I only hear the white noise that is her. I have thought about her all day, hope she's having fun, hope she is safe. Do I wish she were home? Absolutely not! These rare evenings make me long for the life I had before she came. The quiet evenings sitting on the patio with hubby. Eating dinner at any time I choose. Not having to know anyone else's bathroom habits. Being able to jump in the car and go to the store anytime I want. Doing things with hubby instead of alone, because one of us has to stay home with her, and because it is too much hassle to take her along. I miss having friends over for cookouts and having a few beers. Heck, I miss having friends. In many ways, having her is not unlike when my own children were small. I was pretty restricted then, too. The big difference is that I knew my boys would gradually gain their independence, thus granting me my own freedom. Chelsea will never grow up, never be able to be left home alone while I go to the store. There is no end in sight, my prison sentence is for life. I keep waiting for one of those smiling moms whose greatest joy comes from cleaning poop off the walls of a teenagers room to tell me what drugs they're on. But nobody's giving up the secret.