Today’s guest post is brought to us by the very brave Bek, or Rebecca, of Ignore the Crazy. Bek, whose loving and generous spirit has manifest itself in humanitarian aid clear across the globe as well as in her very own home, has agreed to take us along as she takes a hard and honest look at herself while she is processing what it means to be the mother to a child with Down Syndrome. As a preface, Bek wants to make it clear that her revelations are more about herself than about her daughter. “…we love Gracie and do feel so blessed that she is in our family. She is ours and we want her.”
When I found out that Grace had DS, no one told me what to do. Everyone told me what to feel (“you must be so shocked” or “this must be so awful for you”). Everyone told me that she would be happy or sweet. Everyone told me to read to poem called “Holland.” No one told me that I would read it and want to throw it across the room. No one told me how to get from being devastated and sobbing on my bed to being a happy-go-lucky mom of a special needs child. Nobody told me that negotiating the distance between the two places was going to be much trickier than I anticipated.
No one told me how to tell my other daughter that her sister had Down Syndrome or how to explain what that meant. They didn’t tell me that my explanation would lead her to believe that all people with flattened facial features, like her Korean friend Nicole, or people with upturned eyes, like President Monson, had Down Syndrome (bet he never got THAT one before).
No one told me I would come to hate the word “retarded.” Not because I was ashamed that I have a daughter who is retarded, but because my blood would actually boil whenever I hear it used in a flip or casual way. I want to shake the person using the word and ask them if they really know what they are saying. No one told me that I would hate these people because while they get to talk about being “retarded” while I have to figure out how to raise my retarded child as WELL as how to teach my typical children not to be ashamed of that word.
No one told me my relationship with Grace would be complicated. I love her but I am also afraid of her. I want her to be who she is at the very same time I wish I could wave a magic wand and make her typical. No one told me that by the times she reached the ripe old age of three months I would already be mourning the fact that she won’t get married or have children of her own.
No one told me I would have to learn a new language. There would be new medical terms, abbreviations, and lingo used in therapies, and with the doctors and the social workers. There was new protocol on how to set goals for her and how to mark their achievement. No one told me I would have to gear up for a potential battle about school and I would have to decide if I wanted to her to be mainstreamed, included or separated, or what the difference is between them. No one told me I would have to learn how to plan for her future without us while making sure she never had enough assets to make her ineligible for Medicaid. No one told me that I would have a daily internal debate about which I was more worried about, me outliving her or vice versa.
No one told me that when I went to a day center for the first time to check out services offered for my daughter I would feel the same feelings wash over me as I had when I visited as a teenager. No one told me that even when it was MY child in question, I would still feel uncomfortable at the day center. I would still wish I could run out of there. Nothing changed. The fact that I was raising a special needs child hadn’t changed anything. Wasn’t I supposed to be her greatest advocate? Wasn’t my role, for the rest of my life, to be the one that fought for her? Challenged others to see her for all the things she COULD do? No one told me I wouldn’t want to do those things.
No one told me I would dread the day she was finally born because it would mean that we would become “that family.” No one told me I wouldn’t want to bond with her because it was too scary for me to think about it. No one told me I wouldn’t want to look at her when she was born because then it would become real.
Everyone told me that everything would be OK. Everyone told me about their neighbor/friend/ward member that had Down Syndrome and was really nice/really happy/ bagging groceries. No one told me I would come to hate those words. No one told me I would want to snap and shout to the universe that I wanted just a bit more for this child—all my children—than to hope that she could be a grocery bagger someday. I had even said the same thing to another set of parents once. No one told me how all the things that I said to other people would come back to haunt me.
No one told me I would ever have a discussion with a doctor in which terminating my child was the assumption. No one told me how it would feel to have a geneticist sit me down and give me a laundry list of things that could go wrong with her and then give me the choice if I wanted to go continue the pregnancy or to terminate. No one told me I would actually have to put my pro choice stand to the test.
No one told me how to handle this experience. How sometimes I would feel so defeated and cognizant of how unfair this, and then so guilty because the reality is that I have a healthy child who has the expectation of a long and full life. How many mothers across the world would give anything for the privilege of raising their child to adulthood, to have access to medical care and education? I have lived and worked in countries and with mothers who have not had the same expectations.
No one told me how thankful I would be for my husband, who has never been anything but an enthusiastic father to our Gracie girl. From the first minute we knew about the Down Syndrome he has been perfectly fine with her whole package. And, in a moment of uncharacteristic candidness, he admitted that he knew he was being selfish, but that in some ways he felt relief. He knew he would always be able to provide for the needs of this special daughter of his and he didn’t worry about her making choices that would hurt other people. I hadn’t thought of it that way, but he was kind of right. No one told me that I would resent—just a little bit—his willing acceptance of who she is, while I still struggled with some selfish and petty issues.
When I look back, I realize that maybe someone did tell me these things and I just couldn’t hear them. Maybe part of my journey is to get all this stuff out of my system early so that I can move on to being the best cheerleader special needs mom around. Maybe I will look back on this in about 5 years and shake my head and laugh about what a foolish person I was. Heaven knows I do that about our adoption stuff all the time.
To be continued next Tuesday…
I really appreciate your honesty. I sometimes look at the moms of special needs children and I think I could never be so cheerful and gung ho (although maybe it’s a facade). That I would be too freaked out or too intimidated if it were me and my family. I guess I’m glad to know that it’s a learning curve for those moms too.
Thank you for your honesty in all of this. Some time ago I worked at Children With Special Health Care Needs for nearly a year. One of my roles was to help parents grieve when they found out their child had a devastating diagnosis. I could show empathy out the wazoo, educate about the grieving process, guide them to local support groups, etc., but I know I never really got it.
Your comment about being able to laugh about adoption woes was good to hear. We recently adopted (finally, thankfully, happily). And I have to say, before it happened, if anybody said, “Oh adoption is wonderful,” sometimes I wanted to snap back with a crusty “Oh yeah? You try it!”
Anyway, it’s hard to know what to say to be supportive in situations we haven’t experienced ourselves. I know I’ve said some really dumb things to people before, too, and with the sincerest of loving intentions. Reading honest accounts like this, however, gives me a little better idea of things . . . so thank you again for your honesty and depth of emotion.
“No one told me” implies others are to blame. I hope you can come to terms and that you learn to use the spirit and your relationship with God to learn how to react in different situations. No one told me a lot of things, but I figured them out. If every little thing was told to us, how would we learn?
In 1925, Russian theorist Lev Vygotsky asserted that most damaging consequence for children with challenges was not their original disability, rather it is “how the disability changes the way the child participates in the activities of his or her culture.” Most people hear “disability” and think of a condition that makes it impossible or difficult to accomplish life’s basic activities.
I have found that raising my 4-year old daughter with Down syndrome is not that different than raising my other 2 daughters. . . certainly our day-to-day lives are easier with her than with her intelligent, willful, and headstrong older sister (5). The main constraints I experience are from the community — the teachers who may not want to include her; the churches that don’t know what to do with her; the community who just don’t understand disability, equality, and accessibility issues.
When she was first born, I had all the same worries and fears as you. Sometimes, I had to wonder whether the s-called medical “experts” had ever even met someone with Down syndrome.
It all gets easier in time!
bek,
i appreciate you
for everything
Michelle, I thought your comment was unkind. The term “no one told me” is not intended as blame, but rather expresses how one feels when one is dealing with something that is BIG.
I thought it required a lot of courage to write openly about what the author has experienced with a DS child. We often look down on the person who says “this is hard”, “I wasn’t prepared for this experience”, “this trial hurts me a lot” and instead admire the person who only talks about the positive. I don’t think that is fair or supportive.
Wouldn’t it be better if we listen or read with sympathy and kindness than judge.
And to the author of the post, thank you for sharing your feelings and thoughts. I taught Special Needs seminary for a year and a half while living in Provo, Utah. I felt truly humble in the presence of the wonderful students I taught and their parents.
I also related to your feelings about “what no one told you.” I don’t have a child with handicaps, but I was diagnosed with a serious chronic illness 4 years ago. I was terrified about my future. It was only when a wise friend who suffered from a different chronic disease talked with me that I felt more hope. But in many ways, I feel like I am going through uncharted territory. I welcome hearing the experiences of others living with chronic illnesses because it helps me face my future and cope with my present.
I am sure the feelings you have expressed will help other women validate their own feelings and give them comfort.
Thank you so much for this. I have a disabled child and I have felt so many of the things that you have as well. Writing about it has helped me to deal with it more positively and come to understand and cope with my own feelings. Please know that there are others out there who share your fears and frustrations. I never thought hearing the word “retarded” used casually in conversation would make me want to kill the person using it! I never thought we would be “that family.” I never thought I would have to fight so hard for my child to get him the services he needs and deserves. I never knew I could feel so much love and guilt and stress all at the same time. I just want to give you a hug because I walk the same path as you every day.
This is a fantastic piece, and will share it with parents who can benefit from your honesty. You’ve expressed feelings we can all relate to.
A very thoughtful and honest post. Thank you for sharing.
excellent post- such a good way to raise awareness for the inner struggles associated with having a child with DS, sharing your thoughts can help people rethink their assumptions and comments. I am a child life specialist so helping families come to understand and live with medical conditions is what I do, but I am constantly reminded of the very real and complex “pile” of issues, questions, and concerns, so many families feel instantly presented with. Many families have told me how much time and energy it takes to process and the high degree of ambivalence sometimes involved. I think too often people try to minimize the issues instead of helping people cope and adapt without feeling guilty and alone. I did my ms thesis on how living with a sibling w/ a disabilities effects children. So I look forward to hearing more of your words! I think your honest writing is excellent!
Thanks so much for your honesty, Bek. I know a lot of people who suffer through various life challenges alone because they think they are the only ones feeling the way they do or learning things the hard way. When someone like you has the courage (and it does take courage–you run the risk of being unfairly criticized or misunderstood) to share the realities of how it is–at least how it is to them–it can be very reassuring to those who are dealing with similar issues and it can bring about compassion for others from those who haven’t been there. Thank you.
Referring to “No one told me…..”
Yes I felt like that (and sometimes I still do). Its is not an expression to point the blame at someone else. In “The World According To Me” it is only the wish for a Divine Parenting Manual where Heavenly Father gives a bit of the Whys and Whatfors and What-To-Expects. Upfront. At the beginning when we are so overwhelmed with everything being thrown at us in the all encompassing diagnosis of Down syndrome.
I have learned over the past almost 6 years of being a parent to The Love Magnet that the Divine Parenting Manual is given out as tiny bits and pieces or personal revelation. But inbewteen those moments of inspirations are times where, as a parent, I feel unequal to the task. I want to take the easy way and have someone tell me what to do. I want someone to tell me, which is what I read our Brave Bek is trying to convey to us. Don’t we all as parents want that at times. Admit it - we do!
I spent a lot of time in prayer and fasting those first months. I still spend a lot of time in prayer with each new challenge. I have learned humility. I have learned to ask for help. I have learned that I am much stronger than I originally thought. I give full credit to the loving Heavenly Father who gives me that strength.
My dear Brave Bek - Bravo!
Wow ladies, thanks.
I told Dalene that I wouldn’t read comments because they can make me kind of crazy. Then I read comment number 3 and regreted writing this at all. Sometimes things don’t translate well in writing. I was not trying to imply blame (and Michelle, honey, you have NO IDEA all the things that I have learned that no one told me). It was merely a literary tool to express how I felt. That is how I felt. So, while I will try to appreciate you inviting me to use the spirit to get closer to the Lord to..do something–I stopped reading that point, please understand that you don’t know my whole situation. I know that I wrote this in a public place and therefore opened myself for critisizm, but it doesn’t give free reign to hurt my feelings. I addressed how I feel about this on my blog, this isn’t the place for it. In general, writing comments that feel just a TEENY bit patronizing and condesending to other people when they have shared their struggles isn’t a great way to change their mind. It usually isn’t that helpful either. It just makes people feel bad.
As for the other comments, thanks. I am not proud of many of the things that I feel. There is more to the story that you will get next week, but I was simply trying to express the things that I felt were hard. Maybe others wouldn’t find them hard. I have two black children that are adopted, and while there are many challenges I have faced with them and their families, I never felt that I wasn’t up to the task. Grace has been the one that has stumped me. I just wondered if other felt like I did. It is uncharted waters for me.
I appreciate the commenter that told me her 4 year old daughter was easier to raise. That is helpful. To the first commenter, we do what we have to do for our kids, don’t we? I don’t think any of us would choose many of the things that become closest to our hearts, because they are often the things that wound us in some way before they make us stronger. Who wants to choose that?
I wrote this piece for a lot of reasons, one, I was asked to. I also was thankful for an opportunity to really figure out what I felt. I hope that someday if someone else feels the same way and reads this, they might give themself a break. Thats it. I am very thankful to you that have shared your stories and feelings. Like I said, I own how I feel and am perfectly fine working this out on my own, but it is nice to not be the only one…
Now I am off to see Kung Fu Panda with my big kids. Just put a fork in my eyes right now…. sigh.
Bek, I really appreciate your honesty and willingness to share this with us. I know it makes you vulnerable, and I think there are many people who will find strength in your honesty. Thank you.
Bek, you don’t have to be proud of your feelings- they are just that- feelings. They come and go, the rise and crest and ebb like the tides… and they are all perfectly OK.
I adore you so much- thank you for being brave and real and honest in sharing this with us. I have an inkling that your story is archtypal to many mothers over the ages, and like Emily said, many will find strength in your honesty. I know I always do.
Much love, sister.
Bek,
thank you very much for sharing! IMO you sound human and your post gives me just a tiniest glimse into what it would be like. I’m finding this comment hard to get worded right which makes me want to comend you for having the courage to put out there what you did. I’m thinking that there are other Mothers who have received news like you have and are happy to have a voice.
Thank you for putting yourself out there.
Thank goodness you are here telling others. I have no doubt other moms will find your post, now or in a year, and know what they can expect.
While my situation is different, I can empathize with much of what you are saying. We’ve learned a whole new language since my daughter was diagnosed with leukemia. It’s been less than a month, and we are fluent.
Like you, those stories of other people with my child’s condition, while well intentioned, are rarely helpful. I know that people don’t know what to say. So many people say just the wrong thing.
I have a cousin who is mentally retarded. It has always bothered me that the descriptive term is used in a derogatory manner.
There was so much more I wanted to say, but I’m blanking on it. I hope that you feel loved and supported as a result of your post. It was brave and it was enlightening. Just, thanks.
I really don’t know why I am commenting…since you said it all…really you did…You know how it feels to want a pregnancy more than anything…You know how it feels to finally get that “miracle baby” and be thrilled beyond words…You know how it feels to hope and pray and wonder what your child will look like and whether or not that child is destined to be the President of our United States or something else that makes this world a better place…You know the joy of finding out it is another girl…You know how all that joy and hope can turn to fear and worry when a geneticist calls as says not is all well with the world…or is it?…you know how hard it is to take that call…You know how hard it is to sleep after someone calls with that kind of news..You know the days and months ahead…You know the delivery will just bring more stress…rather than less…but then this little piece of Heaven, named Grace Jane starts to shine her tiny little light into your home…She starts to show you how precious her soul is and how her innocence will never be affected by this Earthly existence…She will never need to worry about “the things of the world”-that worry falls on you…She will never hurt another human beings feelings on purpose…She will never have to walk that road that makes so many end up in a very bad place…her road will be much straighter than all of ours..What I wouldn’t give for that…So you see, life in the home of someone who has down syndrome is hard…but her light will shine a bit brighter every day until your house will glow with the Spirit of love and understanding….My house glows brighter everyday with my Spencer, he doesn’t have downs but he has a muscle disease and his Spirit is phenomenal. I know how it feels to wonder about pro-choice. I know how it feels to wonder about the future. I know how it feels to wonder about the past. What could I have done differently so things wouldn’t have turned out this way? I can tell you for me, I wouldn’t change a thing. I would eat less, but other than that my life is perfect just the way it is. Your family is perfect just the way it is. A friend of mine always says, “won’t it be surprising when we die and get to Heaven and we end up with down’s syndrome, because that is what it means to be perfect.” Down’s syndrome can be a gift from Heaven. I think it is.
Bek, you rock. thanks for sharing this peek.
I’m still hiding from Kung Fu Panda. Go you.
Because of what I’ve read here, I will try not to use the word “retarded” in a derogatory manner. I’ve asked two friends that have ‘retarded’ siblings (one with DS and another that’s not) and they gave me ‘permission’ to use it because they do too. Some know that using the term isn’t meant to hurt the feelings of people who find it demeaning, but it looks like there are people that don’t see it the same way. Therefore, I will have to find another term to use that might have the same connotation.
I appreciate your honesty about motherhood, whether it’s to special needs kids or not. Motherhood isn’t all roses to everyone. Motherhood can be HARD for others, even if it isn’t for you (and by you I mean anyone who thinks motherhood is easy-breezy). Motherhood sometimes must be ‘learned’ instead of automatically there. I wish Motherhood came as easily to me as I’ve seen it come to others. Thank you for helping me be a better mother. I love you… Shannon
Just one more comment:
About the word “retard”. In music it means slow, slower, to slow down. This perfectly describes The Love Magnet. She is slow at eating her dinner, often remaining at the table long after her brothers are excused. She is slower during walks because she wants to explore every little thing. She has taught me in my life to slow down or I might miss something important.
“Retard” or “Retarded” does not mean stupid. The use of this word with this definition that some use to explain away their momentary lack of brain cells is insulting. Unfortunately is is part of the common vernacular in many areas. The best way to handle it? Whenever someone uses that word inappropriately I reply calmly “You mean stupid”. I usually get a blank stare and have to repeat so they understand me. Then before they can hem or haw too much and to help them avoid embarrassment as much as possible I tell them “No worries, just change your vocabulary”. And they do. I rarely have remind them.
The Love Magnet may have Down syndrome but she certainly is not stupid.
Hello bek, I’m cheating just a bit by using a comment I wrote a week or so ago for another blog, because it seems to fit here. As the mother of an almost 4 year old with Ds, I often find myself so caught up in the politics of how we say this or that, like never using the “r” word or never spelling syndrome with a capital “S”. There are so many rules about what is acceptable among the many parents who communicate via the internet today.
Most of them would not been able to express their thoughts as openly as you have here, without fear of reprisal from the other moms. For this, you are rather unknowingly brave. I found your blog through another blog where you had come out as a lurker, I’m sure it will be no time at all before many people link to you, as I did, the very same way.
Now on to my comment…
Life as a mother with a child with Ds is really no different from being a mother to any other child. They grow and thrive from the same roots, with the same love and care, and they all blossom into their own little being from the nurturing you provide.
Some seeds grow faster than others, some grow pink petals while others are yellow, each of them beautiful in their own way, all of them worthy of life. The size, shape, and color of a flower cannot determine its beauty. It’s one’s impression of that beauty that is most important.
Fear not the unknowns, or the stories you have needlessly placed in your head (built from your own experiences and misconceptions).
Build your own stories.
Don’t worry too much about what other people think, don’t think too much about what other people see, and don’t live too much by the standards of conventional living.
As conventional is overrated anyway.
Enjoy the milestones with great joy.
Don’t allow yourself to become too overwhelmed by comparisons.
Live, laugh, love, and be happy.
Your child will benefit most from your example.
If someone would have told me that raising a child with Down syndrome was no different than raising another child almost four years ago, I don’t think I would have believed them, yet reality is that is it so very true.
My daughter brings great joy to my life. She has a way of making me smile, even on the most awful of days. She is a much a part of me as breathing, and I am forever thankful for her existence.
She is as valuable an element to our family as any other child, as instrumental in our everyday life as a beautiful note dancing across a well-composed page.
She is who she is—my daughter, a reflection of so many pieces of me, even the extra ones. I love her.
Scarehaircare–just to clarify, the term in music is not “retard”, it’s “ritard”.
Bek, thank you for this post! I don’t have a child with special needs, but I’m all about being real and being able to show who we really are to others. Unfortunately, we do risk criticism and misunderstanding. I recently expressed some of my innermost, secret, and complicated thoughts about being an adoptive mother to an email group of other adoptive mothers, and the silence was deafening. I was certain I could not be the only person having those feelings, but obviously no one else wanted to touch the topic. Thank you for being willing to share!
I followed you from your regular blog, and I’m glad I took the time out of my always-to-busy-day to read what you wrote. It was beautiful and honest.
Again ladies, I must express how thankful I am for the respectful and honest comments here. I really, really appreciate it.
Eljee–sorry about the silence with the adoption stuff. It is hard to feel that way. I remember so clearly the different emotions and conflicing thoughts that I had about adoption when I first started out. Now, it is easy to forgot how strange it was and how important it was to figure out my emotions on that… it is very much like Rebecca wrote in her comment, I am sure there is a way to “do” things in the DS community, just like the adoption community (ie the whole birth/first/natural mom debate, etc, etc). I didn’t think about it too much.
I am learning and will continue to learn and I am sure that I will offend others along the way. Oops. If they find their way to my blog and don’t like what they see, I hope they will play nice. If they don’t, I am a tough cookie (and I doubt that the T21 community can be as mean as the adoption triad..that is shocking..)…
To Rebecca in comment above. I appreciate your words. I know that so far, she is just the same as my other kids. Every minute isn’t consumed with thinking about her being different. In fact, we don’t think about it much these days at all. The day to day issues seem to be not a big deal, it is the “looming future” that makes me worry. Maybe by the time the future arrives, it won’t be a big deal either. Right now, when it is new, it has been hard. I am sure that a few years I will laugh at the things that I said.
But, I hope that what is clear through all of this is that this is just a teeny tiny part of what we feel about her. I could just as easily write an entire article about the adorable faces she makes, how peaceful she seems, how my big kids can’t get enough of her, how much she has taught me about being still or how this particular child at this particular child in many ways appeared at a time when my family could have blown into a million pieces, but instead stayed together and waited to celeberate her life, just how she is… there is more to it than what I wrote, I just wrote from a very narrow angle…
Now I am off to try and figure out the “rules” for writing about T21…
Shannon.. you KNOW I love you and I am so glad you commented. I guess when it comes to that word, it is tricky. I have a friend that has a severely retarded brother that uses it all the time and has the same reasoning..that she can use it because SHE should know. That is great.
I guess I was raised to view using a word that can define a grouping of other people in a derogatorry way is disrespectful. For me it falls under the same heading as not calling things “gay” or cheap people “jewish” or any of the other phrases that are commonly used in our society (some less so than others). Those bothered me BEFORE I was part of this new community. So, it bothered me before but it really bothers me now.
Everyone makes their own choice, but I choose to avoid words that could make someone feel bad if their is another word that can be used in it’s stead. You never know who is listening… It is a respect issue…
bek: Oh, please don’t learn the rules. I am too caught up in the rules, so caught up that it stifles my words. Be free with your thoughts as you were here. Make your own rules. Your piece is wonderful because it was written from your heart. Adjustment is a process. It is ok to take as long as you need in the process.
When I look back on that first year I remember a different me, it was all so difficult, so complicated, such a grand adventure and there I was standing without a map. The beginning of the journey with my daughter is found in Gifts Chapter 4.But that is a rather narrow window on the world that was ours that first year.
p.s. I left comments on your personal blog as “somebody’s mama”.
I’m not sure if this is an annoying “I know somebody” kind of comment, but since it’s such a cool thing, I’m taking a chance. Please, let me know if it’s annoying, and I’ll learn from it.
I knew a woman who had a daughter with ds; she worked very hard as her advocate in the school system and ultimately her daughter went away to college. She was only 2 - 3 hours away, and I think her classes were not of the physics variety, but she did it for at least a year, and I think did fairly well on her own. She had roommates in a normal college roommate situation, too. I’m not in touch with her anymore, so I don’t know where she’s at now, but I thought that was really great.
I have often expressed admiration for you Bek, but I hope you don’t mind hearing it once agan. This is so well written.
When someone bares their honest, deep-down feelings it makes me get all weepy. I think because underneath it all… we ALL get dealt big, fat,overwhelming challenges at some point in our life (for me, infertility, for others…divorce, death of a child or spouse, etc.) that we have absolutely NO CLUE how to navigate. If you haven’t had one yet, you will eventually.
People gush and cheer on those that never talk about the TRUTH…you know, those that put on a happy facade and make the rest of us feel like crap because we have deep-down doubts and fears and shame and confusion and everything else that is involved in being a real human being with emotions.
There’s nothing wrong with putting on a brave face. Sometimes it’s essential, but I NEED people like you to put honest emotions out there. It makes me realize that I’m doing okay, I’m normal and that coming to terms with overwhelming things is a process that takes time and effort. I’m not a bad person if I’m not instantly there.
So, in short, even though I don’t have a child with Down Syndrome (by the way “retarded” is now stricken forever from my vocabulary…) I do relate to the emotions you are going through. I have felt similar ones with adoption, foster care, family problems, etc.
I know that you already know that you will someday reach a point where all these emotions aren’t as raw and vulnerable. Time and experience and “processing it” will smooth out the rough edges and make it easier.
Thank you for sharing your “human-ness” with us. It has uplifted me more than you know!
Bek, thank you for your words about adoption, too. The challenge is, I am not a new adoptive mom–my kids are 6 and 2, and many of the feelings and issues were not there at the beginning, or if they were, I thought they would go away. Anyway, I don’t want to threadjack, so back to the topic at hand!
Leisha, I loved when you said this: “People gush and cheer on those that never talk about the TRUTH…you know, those that put on a happy facade and make the rest of us feel like crap because we have deep-down doubts and fears and shame and confusion and everything else that is involved in being a real human being with emotions.”
Amen!
eljee–I have similar issues. Lets be best friends…
Leisha–you are wonderful… really.
Wendy–I think that I might have been a little too forceful. It isn’t that you don’t WANT the comments, it’s just that you are in a different place. I had a friend who had twins and a few months later one died. People were trying to be kind and sweet but she was getting a lot of “well at least you have the other one to raise” and “you will see her again in heaven’s”. The statements were heartfelt and wellment and she didn’t begrudge the person saying it, but REALLY what she wanted was to raise her TWO babies, here and now. So it was with me. I was SO thankful for the people who reached out and told me the good things. That showed that they cared about me and my family. BUt, what I really wanted was not to have to have those conversations at all. I wanted to unring the bell.
So, never feel sorry for making those comments–even if you say the wrong thing–because the worst is when people don’t say anything at all. (well, I guess saying something mean is worse). I knew the intnetion of the speakers, I was just in brat/denial mode…
Also, in regards to the statement bout how we praise those that put on a brave face… there is a lot of that in ALL of us. No matter what our issues are, we all spend most of the time putting on the brave face because, really, who wants to lead with “I AM SO SAD” (except on this blog?). I love what Dalene is doing here because she is just trying to find stories to tell that show us in a slightly different light, just so we know. I think these kinds of things help us all to be more comapssionate with each other…. don’t you think?
Bek, I don’t think you were forceful. “Being in a different place” makes sense. With adoption, sometimes the positive stories helped, and sometimes they didn’t. I think I get that. I really have enjoyed your essay and subsequent comments!
Compassionate . . . yes. It’s good to hear what goes on behind people’s strong faces, and developing compassion certainly comes from that.
LA–
It’s wonderful to feel your love for your son. But I don’t think it’s fair to label kids with Ds as “perfect.” They’re kids, not deities. Labels, even seemingly positive ones, separate us from each other.
Bek, thank you.
I feel he is perfect…perfect in his imperfections…That is what the human existence is all about…trying to be perfect in an imperfect world…Jesus Christ is who my family wants to be like…and to me…He is Perfect too
Ok. So Kathryn, you got me thinking and thinking and thinking. I think I shall clarify to you why I think someone here on Earth is perfect NOW and they don’t have to wait until Heaven to reach Perfection…I believe the whole concept that Jesus Christ is the only person who here on Earth made only good and “perfect” choices but I don’t believe he is the only perfect person in the world…The LDS religion teaches that we can ALL obtain a state of “deity” as you call it by following certain teachings and obeying certain Universal laws (such as don’t kill without just cause, etc.) If you are LDS and you think kids are “just kids” then you don’t know your own religion. In the LDS religion kids aren’t just kids, they are “inperfect” human beings on their way to becoming “perfect” beings. So, they are perfect in their inperfections. Jesus Christ was always perfect, because of his perfect choices. He was, is, and always will be perfect. He didn’t just die and become “perfect.” He is on an active journey, where he must constantly make good choices and do good things in order to constantly be perfect. He is capable of wrong choices, or at least he was on Earth, and he chose correctly. If we chose correctly we can be deities. Therefore, kids aren’t just kids, they are kids whose lives are on their own path of perfection. If they reach your version of perfection, then the journey was perfect, even if it didn’t seem so at the time. If you want proof that life is a journey, even after death, read people’s stories of death and being back to life stories. They ALL say they went on a journey and most had to make the decision (or had someone else make it for them) to come back. One more little thing, the LDS people believe when Christ comes again, he will cleanse the Earth and everyone will be live in “perfect” harmony amongst one another. I am not saying life with a child with special needs is easy. Life with a “typical” kid isn’t easy. But life is perfection. A perfect journey for imperfect people.
This comment has been removed because it violated our commenting policy.
2. No insults. Please critique the argument, not the person.
LS: I am not Mormon, nor do I know anything more about being a part of the LDS church than what I have read by way of blogs, friends, or Segullah. I am what I would like to consider, a long distance friend of Kathryn. During the time that I have known her she has provided me with amazing support, even during some of her busiest days. She has been a lifesaver to me on more than one occasion and for that, I am thankful.
Kathryn has an amazing soul, and I am not quite sure what to make of your remarks. I did not find her comment judgmental at all.
Obviously, I do not have much background with the LDS church. I do know that one cold January afternoon a few years ago I received “The Book of Mormon” with a letter written on New Year’s Day from someone I consider a friend. I have not been able to read the book as much as I would have liked to, and I must admit that as someone who knows little about being Mormon, I still found her gift to be one of the most amazing things that I have ever received in my lifetime.
I’m not able to say that she is a good Mormon or not, but I do know that she certainly took the time to share something that was so personal to her with me. I have met few people in my life with as big of heart as she has. I love her like a sister, even though I’m not related to her at all—even though I am not Mormon.
I do have a child with those extra chromosomes. I do not believe that she was a special gift from God, nor do I believe I was hand selected to be her parent. I know that many people feel this way, as I have read and heard the remarks of many since my E was born. It’s ok if you feel that your child is perfect, but I do not agree that this is a reality.
We are all entitled to our own beliefs, and can voice them as we feel comfortable, but it does not necessarily indicate that one or another is correct. I get what Kathryn said, it makes sense to me.
Bek: I apologize for contributing to a highjacking of your thread.
p.s. I meant to direct my comment to LA not LS.
Parts of this comment have been removed because those parts violated our commenting policies.
#2: No insults. Please critique the argument, not the person.
Rebecca,
If you feel perfection is attained, not earned, than great. I feel Perfection is a journey, not a destination. If she has a child with down syndrome, which I believe she does, then I believe the Lord sent her that special spirit for a reason. The Lord knows what trials will make us PERFECT. As far as the journey, God the Father created it, and since he is PERFECT, I think it is perfect too. Perfection is a lovely thing isn’t it? When Jesus came back to the Earth he asked for the little children to come to him. Not the judgmental, already tainted by this world adults. Hmm. I wonder if Down’s syndrome children were here on this Earth at that time. They would have been the most RIGHTEOUS spirits alive.
LA, can I refer you to Segullah’s comment policy, found here. I’ll quote from it: “No insults. Please critique the argument, not the person.”
When Kathryn mentioned that she disagrees with labeling all Down Syndrome children as perfect, she was critiquing the idea, not you. She also mentioned how wonderful it was to feel the love you have for your son. She responded with respectful disagreement. What you’ve done in this most recent post is criticize her. Please continue to discuss the ideas, without attacking the person who thinks them.
Emily,
Thank you for your feedback. I have never posted here before and was unaware of the rules.
now that I have finished sobbing, i can see my screen enough to write. Thank you for that Bek. I love your honesty, and i Learned so much.
Love ya
heidi Dressel
Emily M., thank you for referring to the comment policy. It saddened me to feel such contention after reading such a beautifully honest and open post.
Thank you, Rebecca. Your words mean a lot to me. And thank you, Emily.
LA, I meant no personal offense, and I will assume you didn’t either. This is a topic with a high emotional charge, and it’s easy for misunderstandings to occur. (I don’t know about you, but I find myself turning into Mama Bear at the drop of a hat.) Due to time constraints I limited myself to a brief comment, and I can see why it came across as judgmental.
I used to share your views about special children, but I don’t anymore. Please know that the change in my perspective doesn’t at all lessen my esteem for my son.
It’s good to have dialogue about the different ways we make sense of disabilities, and it’s important for all of us to remember there’s more than one way, and that each of our perspectives are valid. At some future point, I’ll write a post on the topic, and I’ll look forward to your comments.
Again, I’m glad your son has such a loving mother. I can sense the strength of your committment to him, and it’s a wonderful thing.
I’m new to this site and am intrigued, impressed and encouraged. Bek’s post has made me examine my own thoughts and actions into the world of “diversity”.
I am so proud of Bek…as a mother, an intelligent woman, writer and a wonderful daughter.
Thoughts “thoughts” but words that are rarely spoken. Thanks for putting in writing many of my own thoughts.
It is refreshing to read an honest account of the path that is sometimes neccessary to get to acceptance of an issue. Thanks for what you have shared.
[...] I know now Today’s guest post is the conclusion of “No one told me,” or, the rest of the story (so far), from Bek of Ignore the Crazy. “I appreciate all [...]
I appreciate your honesty and I really like how you wrote this. Truly…I do.
I thought by own situation. My own breaking of what once was a very strong testimony of the gospel of jesus christ. It said…in a different light…what I’ve thought…”NO ONE TOLD ME…TAKE THE HOLLAND STORY…and…and…and…
Bless You!! I’m a new blog, faithful reader and lover of yours.
Hang in there dear
having been given that poem 14 years ago when my 3rd was diagnosed with a disability, I have missed placed it but would love a copy . please help!!!!
having been given that poem 14 years ago when my 3rd was diagnosed with a disability, I have missed placed it but would love a copy . please help!!!!
Do you mean “Welcome to Holland,” Susan?
http://www.journeyofhearts.org/kirstimd/holland.htm
No offense to the original poster, but I like it.
It suggests the death of a dream, the need for a major shift in thinking, and holds out the hope that although everything has changed, you’ll be going to a new place that will be acceptable.
And the thought of the people you’ll meet: that has been one of the major fringe benefits of my son’s diagnosis (a CHD; not DS). The people I have met over the past year due to his diagnosis include members of an online support group, other families that we met in the hospital, medical professionals, the whole “bloggernacle,” which I would never have otherwise gotten involved with. I have also found out who I cannot rely on, and that is most of my previous community. Surprise.
In some ways, having a diagnosis is a horrible, terrible thing. You’ll rage and you’ll sob. You’ll get miffed at all those people telling you how you feel and never asking.
But that’s just part of the experience. Life goes on.
[I know this is an old post and I realize a number of reasons why someone would not like the Holland essay; just wanted to give a few other ideas..]