Sunday, August 2, 2009

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.

13 comments:

TUC said...

This explains a lot. I am so sorry to hear about your loss and your son's hurts.

Maybe you could talk to someone about your feelings of loss/resentment toward Chelsea.

DownTownDan said...

Your blog saddens me deeply. If it is a cry for help, please seek help immediately. You are overwhelmed and depressed, and your writings (perhaps unintentionally) reveal a deep resentment toward this child.

If your burden is too much too bear, it’s time to seek outside help. Chelsea is innocent. She did not steal your life, any more than my child stole mine. Despite the best of plans, life has a way of presenting challenges that none of us could ever imagine. And it’s not fair, and it’s not easy. But we are measured by how we rise to meet these challenges. Writing about how this child stole your life is, unfortunately, not a shining example of rising to meet a challenge. It devalues Chelsea’s life, and it devalues the lives of other children who have Down syndrome. I would hate to think about others reading your blog and taking away an impression that this is the “real” story of Down syndrome. It may be your real story, but your story is unique. It’s definitely not my story.

The “real” story is that Down syndrome has an extraordinary power to change the lives of those affected. And in many cases – probably the majority of cases - it brings out the very best in parents and caretakers and siblings and friends. It brings families together. It challenges people to do amazing things they thought they would never do. Please reach out to a local Down syndrome group and find the help you need.

Tom P. said...

Hi - I'm the owner of http://www.downsyn.com and I invite you to come and join our forum. We have hundreds of parents who would love the chance to help you.

Don't feel bad about looking for a sleep away school for your granddaughter. It might actually be a good thing if it is the right school. Chelsea might thrive in a different environment. As you said, your home isn't set up for Chelsea. Talk to your local school district (I assume Chelsea has an IEP) about something new for Chelsea. And come to our site and talk to us. We REALLY want to help you and no one is going to judge you.

Anonymous said...

Ditto to what DownTownDan said. It's absolutely disheartening to see that a relative of a child with Ds could write such words.

Down syndrome doesn't choose a family based on socioeconomic status or family composition. The life of an individual with Down syndrome is a valuable as that of any other. There are few difference in your genetic makeup from your own grandchild, she simply happens to have replicated just a little bit of something extra on that twenty-first pair of chromosomes.

Unlike the unfortunate tragedy of your other grandchild you have a living breathing child who needs your love and support. She is worthy of more than you are providing her. I highly recommend that you seek help immediately. It's not fair to short change the quality of her life merely because you feel "burdened" by her.

If you are unsure of where you can get help and support please let us know and we will gladly locate some resources for you. There are plenty of people out there who have walked in your shoes, many of which would be more than happy to assist should you need some guidance.

"Down Syndrome - The Real Story" isn't written in a manner that is indicative of its name. Life with a child with Ds is full of joys and frustrations, challenges and struggles, just like the life of any other child. Don't disregard the happiness of your own child because you are unable to find the pleasure in raising her.

Reach out. Get some help. Do what any grandmother would do for the safety and well being of a child. You will be glad that you did. There's no regret in trying to hard, but defeat, that's another matter entirely, one that leaves an innocent child at a great disadvantage. You owe her more than that, don’t you agree?

Ria said...

It's apparent that you are still mourning for the grandchild that you lost and still angry at her mother and stepfather for their terrible crime. That's understandable. It's ok to grieve over a loved one you lost, no matter how long. But even in grief, we have to remember and be strong for our loved ones who are still here. And maybe it's easier said than done, but Chelsea NEEDS you, NEEDS someone to guide her and teach her. I did not choose for my son to have Down syndrome. Yet, knowing he needed me, I was able to shift gears and love him for who he is without ever thinking that he has taken my happiness away. If anything, he has added to my happiness immeasurably.

You wrote that you love Chelsea and will protect her and give her a chance in this world. If raising Chelsea is too overwhelming for you and your husband, then maybe a good group home would be better for her. There, she would be given more opportunities to realize her potentials. If so, then maybe showing your love would mean letting her go to a home that will cope with all of Chelsea's needs.

And for your own happiness, it might help to seek out and talk to other grandparents who were thrust into the same shoes you are walking in. There are many forums online. Also, your local Down Syndrome association can help. I'd be happy to lend some time to locate resources that may help you and your family. Just let me know.

firemom31 said...

To all of you who posted replies, let me say thank you. I don't have to agree with you, but I welcome your viewpoints. One thing I want to make perfectly clear - I do not, nor would I ever, blame Chelsea for any of this. She is a darling, innocent child who has had the misfortune to have experienced things no child should ever have to. Yes, it is overwhelming for us. Yes, I believe she would be better off in a group home. We are working toward that, she is on the waiting list for the only one around here. I choose to vent my frustration here, rather than with my family, and that is for Chelsea's benefit. As many of you have said you are saddened by my blog, I am saddened that anyone would think I could take my frustration out on this child. I blog so I can leave it here on these pages, it has no place in her world and I won't take it there.

Arties mom said...

I appreciate your need for an outlet such as this blog. I am so sorry about the turn of events in your family life that have caused such stress. I know these have been horrific events concerning the murders. We as humans can only take so much. Chelsea is certainaly blessed that you have maintained what life you could for 10 years to support her. At first my mind jumped to the real need you have for respite and for the waivers available for many kinds of assistance. I apprecite your efforts to compile resources. As I read I realized that a group home might indeed help Chelsea as well as the family, giving her a chance to be somewhere, not being the center of stress for the family. I think a lot of what you are going through may not be just the real story about Ds but the real story about the mounting stress of sickness, over work, crime, murder, divorce, remarriage and coping. Ds plays a part but so much is going on with you and your family! (((hugs))) Everyone needs time to heal. On a stress scale of 1-20 many of the stressors you relate are in the top 5.
I hope you will continue to blog and share how everything works out. Hang in there and stay strong!
BTW I noted the term "old folks". We just adopted my son who has Ds and we are "old folks" too.
I look forward to reading your blod.

Far Above Rubies said...

I can understand your situation. I am sorry to hear about your loss. As TUC said, maybe you should talk to someone about your situation.

I have someone that I think might be able to assist you. I will see if this person can pass by and visit this blog.

God bless you!!!

JRS said...

I'm so sorry to hear about your grandaughter who was murdered. No one should ever have to go through that. Your family has suffered a trauma that most of us will never be able to comprehend. You stepped up to take care of your grandaughter, which should be commended. It is clear that you love her and want what's best for her. In your case, it sounds like a new living arrangement might be best for everyone. I'm glad to hear you're looking into that option for her. In the meantime, I suggest seeking out support for your family. Tom's invitation to downsyn is a great start. You could look into your local DS org. Maybe sign up for Respite services to get much needed breaks. There is a lot of help out there and I'd love to see you reach out and find it. I am saddened by your feelings about raising your grandaughter, that she's taking your happiness and that you see her as taking away years from your life. Speaking as a former 15 year old girl myself, the teen years can be quite difficult, regardless if there is a disability or not. Chelsea might have been challenging even if she did not have DS given the trauma that she's been through. Not only did she lose her baby sister, but through their actions she lost her mom and step dad too. Then she lost her dad who won't take responsibility for her and now she's living with her grandmother who is struggling. I promise you that she knows your feelings towards her, even if you don't express them. Our kids have an uncanny knack to know how we're feeling. I know you feel that it's not fair to you, but it for sure is unfair to Chelsea. We all do the best we can when raising our kids who have a disability. I have found that with my daughter's challenges, there is an even greater joy. It is my wish for you that you find a way to experience the joy that can be yours if you would only chose to look for it. In the meantime, it sounds like counseling would be good, not just for you but for Chelsea too. Please reach out and get help, for all of you.
Best wishes,
---Jen

Anonymous said...
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Anonymous said...

I just stumbled across this blog because I have a sibling who has down syndrome. I would like to say that you are a very selfish person. I see from your comment that you think you are a victim, and I am sure you have suffered because of Chelsea's sister's murder, but have you ever taken any time to think about what Chelsea is going through? And all this complaining about having to do all this stuff for her...LADY that is part of being a parent, regardless of a disability or not. I don't care if she is not like a "normal" child that will someday be self-sufficient, she can still learn and be taught skills now that will help her be more independent and hopefully someday have as meaningful of a life that is possible for her. It is time that you start thinking about chelsea and what she needs and what's best FOR HER instead of complaining about answering questions, helping her with a shower, that your life is over, you have no freedom, or whatever else you are complaining about on here. I am just thankful that my sister has a family that loves her and although it is hard at times at the end of the day I know that all the sacrifices that are being made for her are only going to benefit her in the future. Enjoy venting on here and know that you are in the minority because the community of people who have family members with disabilities love them unconditionally. I pray that chelsea will find a more loving place to be because it's obvious to me that if you have this much resentment towards her and your situation that being with you and your husband is not the most beneficial or nurturing place for chelsea to be.

Anonymous said...

why not...

Anonymous said...

My heart goes out to you and thank you for sharing your story. There is absolutely nothing selfish about your blog. It's quite natural and it's your reality, wish it wasn't so but it is. I would not give another thought about those who have not stepped a nanosecond in your shoes.