Today’s guest post is the conclusion of “No one told me, from Bek of Ignore the Crazy. “I appreciate all the kind words and discussion via comments and e-mail after the last post. I think it is safe to say this is a topic that engenders strong feelings. Like many aspects of mothering, we might disagree on the small things, but clearly there are a bunch of mammas out there that can relate to the feeling of being overwhelmed and helpless, while also knowing we can figure out our new role and adjust to a new kind of normal. What a gift. “–Bek
Like all mammas, I could talk all day about my kids. If you want to read funny stories, touching stories or just stories to make you glad that they are my kids and not yours, come on over to my blog. The point of my guest posts here is to share some of the realistic (and often uncomfortable) feelings that have surrounded my experience with Grace.
I have worried a little bit that readers would think I was too focused how she is different and that it appears I will never get past it. That isn’t the case at all. At the moment she is by far my easiest kid (she doesn’t sass back and she stays where I put her, what isn’t to love about that?). Part of the problem is that when I look at my Grace, I don’t just see her sweet little nose and big blue eyes. I also see all the things that are going to be hard. I have accepted that the features typical of babies with Down Syndrome: the flattened face, the upturned eyes, the space between the toes, the lower ears and thickened neck are all part of the things that make my Gracie girl who she is. But, I also see the agony of trying to teach her to speak clearly, the frustration of helping her understand social cues, teaching her to converse, wondering how functional she will be. I see the potential of this little baby and wonder what I can do so that as a family we can help her maximize all her specific talents. At the same time I find myself looking for things that aren’t “Down Syndrome-y” about her, the expressions she has that are like those of a typical baby. More than I would like to admit I find myself looking for the things about Grace that take her farther from what she really is.
It is strange to me that these feelings are able to co-exist with all the normal feelings that moms have. I love her fiercely. I enjoy our quiet moments together when I can just hold her and soak in all her new baby smell. It has been fun to try and get to know this new little personality. Those things I expected. I don’t understand how I can love her at the same time that I don’t quite know how I feel about my role as her mother. Not as A mother but as HER mother. I don’t understand how I can love her just as she is while wishing that she could be something totally different. I have a feeling that I cannot feel both things at the same time for much longer while still being the mother that Grace deserves.
I am being told not to borrow trouble. I have been advised not to worry about who is going to take care of her when I die. I shouldn’t stress out about if people will be mean to her in high school. I am not to worry about how long it will take her to learn to talk or be potty trained or wonder if I am going to have to fight to get her into a typical classroom. There is plenty of time for that. I have been told to just enjoy her. I am trying. I keep trying. It isn’t easy for a control freak such as me.
I think what it comes down to is the fact that I am terrified that people will look at her and act the same way towards her that I have towards people with special needs for my entire life. Condescending. Patronizing. I touched on it briefly in my last post. These things aren’t done consciously, of course, they’re done only as one with the luxury of never having to think about what it means to be anything other than typical. It is the special needs equivalent of “white privilege.” There is a tiny part of me that is worried that even though she is mine, I will still feel that way. I keep waiting for the magic wand to appear that will make me feel at ease around other special needs people. I wonder when the transformation will come that will turn me into a more patient and helpful type mom for the Down Syndrome community. It isn’t that I can’t do it, I just don’t want to have to do it. It is not a role I would choose to play.
When people ask how things are going or how she is doing, I know my role. I am supposed to say “great, it is all great, she is fine, a blessing, we love her.” Those things are all true, but what I really want to say is “I worry that I will never get to know her on the same level as my other kids, or feel the same way about her,” or “Gee, I was just trying to figure out how to raise my children in such a way that when the time comes for them to take care of her (and this is assuming that they aren’t taking care of my husband and I at the same time), they won’t be resentful, but will remember that they love their sister.” That conversation is not ideally suited for the nursing lounge at church. Trust me on that one. Others want to be assured that even though Grace is different, everything is fine. Other mothers don’t want to hear anything uncomfortable about it. They want to tell me that God must think we are special people, or she is, or that we must be great parents, or that He knew that we could handle this challenge. Don’t get me started, especially not in the nursing lounge at church.
It is ironic that I worry about these things, because I am already the mother of another special needs child and we are also a family that was formed via transracial adoption. These aren’t totally new issues for me. I have become used to living “out loud.” I am used to people staring at me when I call my black children “son” or “daughter.” I have become used to people stopping me to pay small compliments or tell me about their friend/family member that also adopted. Even the silly and stupid things people say (yet another post for another day) don’t really get under my skin. It comes with the territory. We chose this and knew this was what to expect when we adopted. We took classes on how to prepare for these things and had the chance to ask some really hard questions of ourselves. At any point we could back out and say to ourselves that we just weren’t up to the challenge.
I didn’t choose Down Syndrome. Granted, I was given plenty of opportunity to back out. I heard a statistic that around 90 percent of women who have a child diagnosed with DS before birth will terminate. My OB thinks it is higher. In her 30 years of practice, Gracie was only the third baby with DS my OB has delivered. Most of the other parents of children with DS that we know found out at birth. Many have said that they are glad they didn’t know before because they would have terminated and missed the chance to parent their special child.
So here I sit. Thrust into a role that I wasn’t ready to play and one that I don’t want. Don’t get me wrong. I WILL do it. At some point, I am sure that I will become the best ”rah rah special needs” mom in town. My husband asks me why I feel like I have to be that person and why I feel guilty because I don’t want to do it. We both know that is who I am, that it is what I do. I am the advocate, the crusader, the room mom, the type A person that fights to the bitter end for what she believes in. I am ashamed that I have been slow to find the desire to this for my daughter. It doesn’t mean I love her less. In fact, it has very little to do with my daughter and everything to do with me. This struggle is all about my fears and insecurities and frustration. Grace will be fine.
If she is like her brother and sisters, my Grace will be sweet and spunky, wild and loving. She will find what makes her happy in life and go to the day center and make her art projects and sing her songs or go to her job and be just fine. She won’t complain that it smells funny or that people get too close or talk too loud. If anything, SHE will be the loud one (it runs in the family). I expect Grace to live a long and full life. I have every hope she will be happy and loving and capable of taking care of herself and living on her own someday. She will have friends and boyfriends and live a life filled with people and interests and hard work. Just like the rest of my kids. When I think of it that way it doesn’t seem so bad. It doesn’t feel as sad as I feel right now. I have some work to do with myself on this one, I know.
I have come farther than I thought, though. Last week, just after the first post published I met some friends for lunch. Shortly after we arrived a large group from the day center across the street showed up. It was their annual volunteer appreciation luncheon. Its purpose was to thank the clients of the center for all the hard work they do in the community. Some of them had DS, some were in wheelchairs, all had some sort of degree of mental retardation. As the group filed in, I watched the other patrons of the restaurant. Many were shuffling in their seats and averting their eyes. Others were staring at the group and seemed to be thinking “Oh great, there goes lunch.” My eyes landed on a woman with DS. I’d say she was thirty or so. She looked sassy in her jeans, her visor and Giants T shirt. I watched her flit from table to table—interacting with everyone there. She was teasing some people and giving others high fives. A social butterfly to be sure.
Then I noticed other things. She settled next to one woman who is a quadriplegic. She picked up some yogurt and a spoon and fed her friend, carefully cleaning off her mouth after every few bites, chatting with her the whole time. Even though I didn’t see her friend talk back at all, or even respond in any visible way, it was clear that there was communication going on. I couldn’t imagine my typical kids doing something like that without being asked and without complaint, let alone being able to see past the physical limitations. I saw her help another friend pack up his backpack as they were leaving. His hands were in balled tightly in fists. She just sort of filled in the gaps where her peers were missing some pieces. It was kind of cool. That is when I sat there hoping that not just Grace, but all my children can be like that.
After my meal I went over and introduced myself to the woman. Her name is Janet and she was pretty excited to see the baby. She told me how her brother is going to have a baby and she will be an aunt. She asked to hold Grace and I let her. While she stroked Grace’s hair, I told her that we would be coming to the center starting next month and would be seeing her more often. She told me she loved seeing the little kids there. Then she handed Grace back and told me she had to go because her friends needed some help. And that was that.
It isn’t as hard to see myself becoming part of this world as it used to be because it is just part of who my daughter is. That teeny tiny extra chromosome she carries has made such an impact on our lives. It has not allowed me to entertain the luxury of pretending that I can predict exactly what this child will be. I retain that illusion for now with my other three kids. It might take a few more years to realize that their lives are also going to play out differently than I pictured it. We all realize that about our kids at some point, right? With Grace, we just realized it before she was born. And it just means different–not better or worse–just different. As I practice taking things day by day and just remembering that she is my little girl, life seems good.
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I love that story about Janet. What a little blessing to see her and the way she interacted with everyone.
The thing that intrigues me most about life is how so much of it is being faced with something scary and awful, and just having to carry on, no matter how terrified we feel. And then looking back and realizing how strong we actually have been. And how we’ve grown.
Sometimes I look back and laugh at how silly I was. When I had my first child I just really didn’t love her at first. I would sit and worry that the bond that everyone talked about would never develop. But it did after a while. It was (and is) so strong it takes my breath away. It seems almost comical that I ever worried about it.
I’m amazed that you’ve covered this much emotional ground if you’re still in the nursing lounge with Grace. It’s got to be a complicated set of emotions to sort through. Great post–thanks.
Thank you very much Bek for your honest post. when sitting in “nursing lounges’ and the like I often wonder who the woman in there really are. what they are really thinking. The appropriately kind words we find to say to each other often seem inadequate. But we’ve been trained to use them to make them fit. And really, who has time to sort through it all in the lounge?
Anyway, thank you very very much for sharing.
Great post. Thanks for giving us this insight into your life and your family’s life. When you were talking about saying what people want to hear and not disclosing how you really felt (for example, in the nursing lounge), I was thinking about when I when I was very depressed and had felt the same way. I found that talking to a therapist extremely helpful. She was someone who was a good listener, not connected to anything else in my life, supportive, unable to disclose anything I said, and a wonderful person. She was trained to not be uncomfortable with what I said (or at least she didn’t show it). Whenever I worried that I would say something too crazy to her, I would think, “I’m sure she’s heard much crazier things before.” I never felt like she was judging me. I never worried that saying certain things would hurt or worry her, like they would with my loved ones. She would just listen, nod, and then help me move forward. Anyhow, I don’t know if seeing a therapist is right for you - everyone deals with things differently. But I thought I’d mention what helped me.
I cried while reading this post. Thank you for sharing your worries and fears, hopes and dreams. Thank you.
Thank you for writing this!
If you haven’t already done so I highly recommend that you get involved with the “special needs” community. These people are amazing. I understand all these feelings you are feeling and have found so much strength in their company. They not only provide the emotional support that you need but also offer the information and resources that you will need to confront the ableist attitudes that you and your daughter will encounter. You are not alone.
Thanks ladies!
Kathy, I know the nursing lounge is not the place to hash it out, it just seemed back then when it was raw, that it was unfair that I had to worry about the things that I was worrying about and the other moms had seemingly no worries. Not true, I know. At my core, I know that words were spoken out of love and comfort. That I always knew.
Tiffany, thank you.
Marie–I am just starting to get involved with the special needs community. We have our first play date this week. I am trying to shift over from adoption community stuff to special needs stuff…
Jeannie–amen. I couldn’t have said it better.
Sunlize. I have a really good therapist that I have seen in the past about other issues. I am a therpy missionary. It has helped MORE than I could have ever imagined. I appreciate this advice though, b/c if I hadn’t already seen one, this might have just been the ticket.
Annette, I have another special needs child so this isn’t my first time to the party. That is another reason why I was so thrown about the feelings about DS.
I didn’t reply to the first post. I wanted to wait and see what the follow-up said before I added a comment. This post comes at at time when our own special needs daughter is reaching some milestones and I am learning once again to never say never.
Her special needs are the result of treatment for leukemia when she was 3 years old. I only mention that because it’s usally one of the questions that eventually gets asked, “What’s her diagnosis?”
I remember well when the Bishop told us that she understood enough to be baptized at 11.5. He had been interviewing her each year. That last birthday interview he said - lets see in 6 more months. We learned so much about baptism through this is experience as well as how special a Bishop can be. And what a wonderful day her baptism was.
A year ago she finished her 3rd year of Girl’s Camp. In our Stake the girls do a 3-day 25 mile hike in the mountains their 4th year. She has been with the same girls every year and yet I was sure this was something she wasn’t going to be able to do. As soon as camp ended last year though she was talking about it. It was frustrating, I didn’t know how or what to do. I just kept moving towards getting her on the hike.
Last week not only did she hike 25 miles, but the took a wrong turn and it ended up being about 35 miles total. She is so thrilled to have accomplished that hike and more than a little excited about being a youth leader next year. But what did I learn? That she knows how to tie her shoes! She didn’t even tell me! I found out by accident the day she was leaving.
There are other things recently that have told me to never doubt what she is capable of and what the Lord has in store for her. It is at times that like these that I am humbled to be her mother. I am humbled to be a mother period. I’m just glad that I don’t have to do it alone and that the Lord knows what I need to teach my children so they can do what he would have them do in the future.
Wow, Bek. I totally loved reading this post. Thanks for your honesty about how you are feeling.
“They want to tell me that God must think we are special people, or she is, or that we must be great parents, or that He knew that we could handle this challenge.”
That doesn’t end in the nursing lounge, it perpetuates. I think other moms say this because they feel some guilt for having ‘perfect,’ healthy babies/children. Sometimes I want to tell them that being ’special’ is not all it’s cracked up to be.
Actually, we’re all special. We each have our own things we deal with in life, some are just more obvious.
Thank you for your honesty, this post is beautifully written.
Thanks again for opening your heart for all to see- it is a beautiful place.
We don’t share the same trials but I find something in your writing that does resonate with me. Fighting ourselves to be what we want NOW. We are so impatient, perhaps scared we’ll die tomorrow and not be the person we wish we were. My favorite new phrase- ‘we’re all in process’. I say it in my head to myself more than outloud (it can sound too much like we’re heading for a box of tuna helper) It reminds me that growing takes time, for others and for myself. We’ve got time to sort it out and become who we want to be.
I find it interesting that you said you were thrust into this role right after you talked about all the people who terminated. You knew beforehand and you made a conscious decision to carry Grace, so it seems like you weren’t quite “thrust” into it. It sounds like you’re going on the right road, I hope all your dreams (the positive ones) for Grace turn out. What a beautiful name you gave her.
This has been wonderful to read, Bek. There are so many things that struck me about your posts. I think the part I understood the most was this: “It isn’t that I can’t do it, I just don’t want to have to do it.” I get that. Thank you so much for sharing all of this so openly.
Although, I would not change places with, I admire your positive attitude and pluck. Every child is a special needs child, it is just that some of them have more needs than others.
A long time ago I worked at the American Fork Training School for Retarded Children. At that time Parent’s didn’t keep their DS babies at home. They sent them off to the institution. Some of them visited and sent gifts. Most did not. If they had been home long enough some of them were put on a bus bound for American Fork with a little suitcase full of their clothes and a note pinned on their chest. At least now-a-days people don’t believe parents have DS babies because they are being punished for some actions in their past.
You may not know what Grace will be anymore than you know what your other children will be like. Life is full of surprises. But, one thing you can probably count on is that she will always be in your home and she will always be loving toward you. You will need a special needs trust along with other good estate planning. That can only be a plus.
If others don’t understand it is because they don’t know better and lack experience. Time will take care of that. Bless your heart.
I can’t speak for Bek and I’ve not ever been faced with such a difficult choice. But I imagine if I were encouraged by my doctor to terminate what would still be considered a viable pregnancy, I wouldn’t see it as a choice at all. I can certainly understand feeling a role was being thrust upon me if I didn’t feel I had any other choice that I personally could live with.
In any case, what a beautifully written post, Bek. Thanks again for your honesty and for your willingness to put yourself out there. I know I’m not the only ones whose mind and heart has been opened by your telling your story.
Mommom–how awesome is that? I love to hear things like this. There is no way on earth that I could even do a 5 mile hike, let along 25… and I love how you learned she could tie her shoes. That is a good one!
Lindsay–I always love to hear from you.
Organic Mom–you are right. Having been the mom that didn’t know what to say, I know that it is coming from a place of compassion and love, but it still is a strange place to be..on the other side of that comment.
Jendoop–yes, yes and YES. Impatience is a good word to us. Thank you.
Michelle G–she is our amazing Grace and we do love her name. I appreciate your words. I have to be honest, I am struggling to not take your comments the wrong way. I would like to respectfully suggest that the decision NOT to terminate a pregnancy doesn’t automatically mean that other emotions relating to the adjustment don’t exist any more. They kind of aren’t the same issue. Even if we had chosen to terminate, other issues and emotions would have the result…so it isn’t quite that easy. I was also sharing my feelings and experiences. I might be wrong, but it does feel a little bit like you are trying to invalidate my feelings. It is conversations like that which make it hard for people like me to express themselves…. but I do appreciate your viewpoint.
Wendy — Thank you.
Claudia–can I just say, WOW. I am thankful that I am embraced by my community and congregation and that there was never any question that bringing Grace home is what would happen. I sat in the baby class today with several other kids with DS who are the same age as my two year old and I thought to myself how lucky I am that there is a COMMUNITY for me. That makes such a difference. I think about the mom’s before me that didn’t have such support. I am thankful for people who fought the battle before I got on the scene.
Dalene. To be honest, I gave it a long and hard thought. I know that if I had chosen to terminate, I would have been excommunicated from the church. I would have still done what worked for me, but I think that a choice that has a consequence that is equal to things like infidelity, etc, etc is one that should not be taken lightly. Again, I am pro choice and this was my choice. That being said, I really had to think about the fact that not only was the pregnancy viable, but there was every expectation that she would lead a healthy and fulfilling life in every sense of the word. That is what did it for me. I made the right choice for me, but that doesn’t give me a free pass from feeling overwhelmed and worried at some points.
Great discussion ladies and thank you for letting me post..
I could be wrong about this, but I don’t think an abortion automatically carries with it an excommunication sentence. But perhaps you mentioned this because of conversations with your bishop or loved ones. Like I said, I don’t know everything about how that works. There are certain cases in which abortion is justified and not condemned.
Michelle, I thought in context that Bek was specifically referring to the thrusting part as being pregnant with a child she did not choose. Yes, she did choose to have her little girl. But the role of what it means to be a parent to a special needs still can be thrust upon a person–the expectations of family, a community, congregation, society, etc. In taking upon herself the role of mother to a special needs child, whatever she feels about it, there are a multitude of people who have expectations of how she will fulfill that responsibility. That has been demonstrated well here.
Just because we take upon ourselves a role, doesn’t mean that we won’t struggle with conflicting feelings what the role is and how we are to perform it. And once those feelings are resolved, it doesn’t mean that they are resolved forever. Truthfully, much of what I have read in the two posts by Bek is a pretty poignant description of someone going through the grieving process.
Those conflicted feelings are feelings whether they are popular or not. Unexpressed, they can be emotionally-thwarting.
Again, Bek thank you for your honesty in sharing your feelings. Even though I am not in the same situation, the insights you have shared have really helped me in some things I am experiencing.
Thanks Tiffany for your kind words too. You got it right. Ironically, after not being pregnant for years and adopting two kids, being pregnant is about the LAST thing I ever thought I would be. To put it mildly, so the pregnancy itself took some adjustment. In fact, I would say it was more of an adjustment dealing with being pregnant than it was dealing with the DS, but seriously, how many posts can one person do???
As for the termination/excommunication thing, I did speak to my bishop and he told me that it would have to go to church court, but in the case where mom is healthy and baby is healthy with reasonable expectation of life (not to mention we are financially able to do it, etc, etc) it was something that would have to be talked about. I know that excommunication isn’t always automatic with a termination, but in our case it pretty much was the thought, especially since we had the option of having the baby and placing her if we didn’t feel we could raise her (and believe me, there are LISTS of people willing to take kids with T21).
I think it is one of those grey areas that are on a case by case basis. In our case, the baby was fine (she is super healthy now too… very strong and getting HUGE) and we were able to do it… thanks for that though, I don’t want to give the wrong idea.
Off to feed the kids. We are feeling the effects of all the forset fires, it smells like a barbeque outside which makes me want to bbq… have a good week every one.
Bek, the more I know you, the more I love you. Opening yourself like this, allowing others so see inside- you are an amazing woman.
I can’t wait to meet Gracie. She’s going to be an amazing woman someday, too- Hopefully she’ll have a touch of your pluck and your zest and your honest, open, strong spirit.
Bek, thanks for writing these posts. I’ve been reading them, and thinking, if I were in your shoes, I would resent the role of special needs advocacy too. I would just want to learn to enjoy my child. For me, I think that would be all I could wrap my head around for a long time.
Thank you again for your honest, thoughtful posts.
Hi, Rebecca - Thanks for sharing your experience with us here. Your children are so blessed to have you as their mother. Please do check back in now and then to let us know how you and little Grace are doing. Best wishes to you and your family.
Bek, I have loved reading about your feelings here and echo others’ praise for your openness and willingness to share.
Something just struck me about the way your words were put together - I think every part of Grace is who she really is - the parts that are typical and the parts that are not. There’s nothing that could take that away, you know? I think it’s wonderful that you look for strengths that may help her integrate into the world of the typical around her.
“A social butterfly to be sure. ” from then on two big fat mommy tears developed and rolled down my cheeks until the last sent.
very well written personal thoughts.
thank you for sharing/ trusting us with them.
I would so talk with you about this in the nursing lounge at church:) One thing I do know from the people I know with Downs is what you witnessed with Janet. They are all missing the mean gene. They are so loving. I was just discussing it with a DS mom recently, he is perfect in a way none of us will never be in this life. Hopefully your daughter will help you learn that trait more while you help her survive the other stuff. I think you’re doing great so far.
I understand and appreciate your feelings so much. I especially appreciated this comment from “jendoop”…”Fighting ourselves to be what we want NOW. We are so impatient, perhaps scared we’ll die tomorrow and not be the person we wish we were.” Wow, so true. That is me in a nutshell.
I can see that you have the highest expectations for yourself…you know what you are capable of achieving. You know you will get there. I think it is important to feel all the conflicting emotions you are having and not rush through them because of how you think you are supposed to feel. In my past I’ve tried too hard to skip to the “healed, whole and healthy” portion of growth/acceptance without fully dealing with the “frustrated, exhausted, overwhelmed” parts first. It just doesn’t work. So, I think you are doing the right thing in being honest with yourself about how you are feeling on each step of your journey. It’s healthy in my opinion.
P.S. What kinds of things make you feel good to have people say to you? I always tend to compliment a baby or child with special needs the same way I would compliment any child…”oh she is so beautiful, etc.” and kind of avoid the topic of special needs all together. Teach us the appropriate and comforting things you appreciate hearing…especially in casual social situations where you aren’t good friends with someone, but they want to acknowledge your child.
Bek, thank you for your honesty.