I knew the day would come, and now it has. John and I have had many heartfelt talks about how we will handle it. What will we say? We have the challenge of trying to strike a balance between acknowledging her pain and the fact that life hasn't exactly handed Eden the easiest set of circumstances, but also remaining positive and helping her to realize all of her wonderful attributes and pointing out the many things that she does well.We have always talked frankly to her about her disabilities. She knows, as well as a 6-year-old can, that she has CP and that she is deaf, and that these are a result of her being born way too early. We have always involved her in equipment decisions and have talked about the importance of stretching, PT, and exercise. She has always been pretty upbeat and excited about trouble-shooting new activities to see how she can participate. And up until now, she has always just been pretty matter-of-fact about all of it.
I think that the Conductive Education summer camp really stirred up some realizations and got her thinking about it a lot more. I don't know if she went into it thinking that she was going to learn to walk while she was there (which she did not), or if it had to do more with Holland being able to do gymnastics camp (which Eden can not), or if it was just being around so many other kids with various levels of disability (some with more limited ability than her), that brought on a greater or deeper understanding of her own limitations.
Whatever it was, there were a couple of occasions during the camp that she mentioned that she wished she could walk so she could go to camp with Holland. Since we have been home she has mentioned it a couple of times as well. "I wish I could walk."
As much as I tried to prepare myself for these words, I gotta say that each time it still feels a little bit like a punch in the gut. It kinda takes my breath away and breaks my heart a little bit more.
I still feel tongue-tied and a little bit unsure of myself and the best way to handle it. What should I say? What do I say?
I generally say something along the lines of, "Oh Honey, I wish walking wasn't so hard for you too. But you know, everybody has different things that they are good at. You are very lucky because you are a kind and smart girl, with a family who loves you very much just the way you are. You work really hard and you are able to do so many things. You can see. You can hear with your cochlear implant. You can talk and eat. You can crawl all around the house and are a great driver in your power chair. You have a great imagination when you play and you already know how to read and you haven't even started kindergarten yet! You are an amazing little girl who can do so many things. So, let's just keep working on your walking and with practice I am sure it will get better and better. But even if you never walk, I will always love you exactly the way you are."
Sometimes she smiles at me, gives me a hug, and says, "I love you too Mom." Other times she gets a little sad and teary, and gets really quiet for a while.
Every day I just hope that I am doing a good enough job at this.
33 comments:
I wish I knew what to say to help you Billie. I do know this, you are a kind and giving mother. Everything you do is out of love, and that cannot possibly be wrong. I am glad that camp went so well and you had such a fun summer.
Oh, that made me all teary. We all want so much for our children and it must break your heart whenever she says that.
I think your reply is great. I also think that sometimes I would reply, "I know you do" and leave it at that. She might have more to add and just an acknowledgement of her feelings would encourage her to continue.
Okay, re-reading that "I know you do" sounds snotty. I mean to say it in a gentle, wistful kind of way that would encourage her to continue talking.
Wow...what a tough conversation to have!! It sounds like you are saying all the right things. You are acknowledging how she is feeling, but also guiding her towards positive thoughts.
I agree with Linda. I have a son with spina bifida who uses a wheelchair and 3 other children who have to limit different activities due to chiari malformation... when they express that they wish they could XYZ (whatever it is), I have found that giving them a hug and saying, "I know... I wish you could, too. Sometimes it's hard seeing others do things you can't, huh?" That opens the door to them expressing further what is on their minds, which helps them to ultimately feel better.
Sometimes reminding them of everything they CAN do is important to do, but sometimes it's equally important to agree with them that it's disappointing to have limitations, because the truth is that yeah, it is.
My heart is sad for you and for Eden. It is so hard when your child realizes that there are differences that prevent them from doing things they want to do. My autistic son is just now realizing that he's different... and that's hard for him and sad for me, so my heart goes out to you and Eden as you two face this together.
((((HUGS))))
Your response was so graceful, I couldn't imagine anything you could do aside from sympathizing with her and pointing out all of the great things that she CAN do.
Encouraging you to not be so hard on yourself. I wouldn't imagine there is no more 'perfect' answer than the one you lovingly gave her.
Besides the circumstance predisposing her new realization, she is maturing - giving her more ability for cognitive insight.
Agreeing with Linda for giving a shorter answer - which might not express everything you want to say, but allows her to continue to probe you with questions.
Define 'walking'. It is not either none or all. Well, I have already defined it on my blog - look in the box 'Standers' for the link. Best, Barbara
Billy - I think you're doing a great job. I'm so amazed at how far Eden has come over the years, watching them grow up here on this blog. I know she's bound for greatness.
This makes me very teary too. I worry about the things my daughter (who has hydrocephalus) will say and how I will be able to comfort and encourage her. Its similar to to the way I worry about the birth family conversations I will have with my son that we adopted. Sometimes being a parent is heart breaking.
What a hard thing to address. I have been thinking about all this a lot lately with the trio starting preschool - the differences and limitations between them, between them and the other kids, as well as how mean kids can be with picking. It's so hard knowing what is right to say but I have to say I think your response has been perfect. Understanding with encouragement.
I know you're also faced with times that Holland can do things that Eden can't, we have the same issues with Johnathan and Mady vs. Annabel, it's so hard to explain and handle sometimes, breaks your heart that they can't all do the same things.
Keep up the good work, you're a great mom who is providing Eden with all the right opportunities to do as much as she possibly can!
Hugs!!
I agree with Linda and Kate. It's important to acknowledge Eden's feelings and allow her to express them. That way she can get all the hurt out instead of repressing them. Eden is tougher than you think. She will go places, that girl, one way or another! =)
I think your reply is great. You are right that in her own way she will excel at things other kids find difficult.
I can't even imagine the pain that statement causes you but please feel assured that you and your husband have done so much for both of the girls in reaching their independence.
So far Elizabeth has only told me that 'it's not fair' and even that had me turning away in tears all I could tell her was she is right that sometimes things are not fair. Sometimes I hate prematurity.
A difficult topic, really. I am 20 years now, and also a wheelchair user because of CP. Sometimes I still think of being able to walk. It would make many things easier.
But on the other hand, I then realize that it also has many advantages of being disabled, things that I probably wouldn't want to miss. I have found so many things on the Internet and elsewhere and met many people, which I probably wouldn't have if I was able bodied, including your blog.
I don't know anymore how I have felt when I was 6, but at that age it was certainly not easy for me too, although I didn't have the opportunity to meet other disabled people at that age and I don't have a twin sibling to compare myself with.
Ouch, what a tough conversation to have. I often wonder if or when my CP kid will say things like that. I think your response was as close to perfect as it could be. I hope Eden know how awesome she is and just how many people are rooting for her.
That's just no fun for any of you. She's a smart cookie, and so of course she's going to start making these connections. I think you are handling it beautifully. Much love to all of you.
I worry about this conversation someday with my son, too. We don't know what the future will hold with him because of CP. But, I appreciate seeing your thoughtful dealings with the topic, Billie. I have a lot of mom guilt still. I know it is unfounded, but now that my 2.5-year-old is saying "walking," "help walk" I can't help but feel guilty that being born premature was my body's fault. But, you have amazing daughters and they are inspiring, which is more than most six year old accomplish on an average day!
I agree with Kate. Sometimes it is important to just acknowledge the disappointment and pain, without trying to bolster it up by showing off what makes her special, too.
I agree with all of the other compliments and suggestions already given. Eden is improving and at six she has surely not hit the ceiling of her physical abilities. (Think about the improvement you have seen in the past few months!)
Keep giving the answers you're providing now, say "I know that you do" and allow her to speak, how hard she is working in PT and how many predictions she has disproved. Has Eden seen the very early videos you have posted in the past of when she first started cruising? Perhaps seeing how hard it was to do something now see so easy would be encouragement?
Oh Billie...I know this is hard...you are a great Mommy, and you have some beautiful little girls. Eden is blessed to have a mommy like you.
That began at about 4 1/2 for Ben. I can't tell you what I would give for a mic in my ear telling me exactly what he needs to hear at those moments. It really is a heart breaker.
We were at a parade last weekend with lots of friends and Ben stopped to watch the kids running and jumping to get the beads and candy. He looked me dead in the eye and said "Mom, I'm just never going to be like the others." before I burst into tears I told him that those others we not that much alike and isn't he glad that he would never be just like that kid (as I looked toward a typical kid LICKING candy off the road). Bad form for me to toss a child under the bus BUT it did work us past the sad.
It is just plain hard.
wow Billie, what a tough conversation to have. you handle it so well. I too wish she could walk xxx
Tertia
www.tertia.org
I agree that both answering "I know you do" and listing Eden's abilities are good responses. Perhaps you can also encourage her to think about walking. What is it? A way to get from one place to another. It is not necessarily and end in itself. You'd like to see her walk, of course (and I believe she will!), but your main desires for her are health and mobility and confidence and independence. There are different ways of getting to those goals, and a wheelchair is not necessarily a cop-out. I think you are doing everything right in letting her know that her worth is not dependent on whether she walks or not. She has come so far in six years (I remember seeing the video when she could barely belly-crawl) and will go farther. We could all learn something about determination from her! Hugs to you all
Ugh. It sucks. We are having a lot of those conversations in our house as well. Sounds like you are handling it the best you can. No matter how hard we try to "handle it" though, it still sucks.
On a happy note though, I absolutely love her stylin' outfit and she looks great standing up in front of that walker!
Gosh. I cannot imagine a better answer. I also can't imagine a harder question. She is lucky that she has such a wonderful mother to guide her through the rocky questions that exist in life. I'm sure no one is doing it better than you are.
what you said to her is great, and what everyone is saying is as well.
It is also important that you let her know her feelings are valid. - Let her have her feelings, and sometimes just agreeing with her is ok.
Oh Billie. I keep waiting for the day that Grace says that. I think you have perfect responses and you love her so well.
I think you are doing a darn good job. Your reply is honest and true and so full of love.
I think she will walk one day. And great reply. That is a really hard thing to answer. Really great reply. She has just come so far and you guys work so hard. That is one thing we realized with Ellie, there is no age cut off for development or making progress. I met a mom once who told me her son, who has quadriplegic CP, got out of his wheelchair at age 14 and started walking then. I have hope for Eden, but better than that, I see the evidence that she continues to make amazing progress at all fronts. Still, you'd tear up for her for sure and wish you could just make it all better right in that moment. Sending you all hugs.
Is it possible for you to find an older child -- maybe high school age, who is a wheel chair user to be a "big sister" or mentor to your daughter? Sometimes it really helps kids to see that they're not the only one, and to ask someone who's been there and done that for advice. Your heart breaks for your daughter, but a teen who has already experienced what your daughter is going through won't feel sorry for her or pity her. She'll have practical advice that you might not be able to give because you haven't walked in her shoes, if you know what I mean.
Oh Billie, what a heartfelt post.....
My daughter (also a twin born way too early) has also recently said "I want to walk".
Its a heartbreaking little statement isn't it?
Billie, I hope that I am as strong and as capable as you are in this when Ari gets to that point. Of course, I have thought this at many points along our journey, and I often refer to you and Eden as guideposts for us. You are a wonderful mother, and I admire the way you gracefully navigate every new and unprecedented situation (for us) that arises.
This just made my heart melt and for a second I thought I had been punched in the gut as well. As a mommy of a preemie, you sit and wonder, when will it get easier. Thanks for sharing your story.
Post a Comment