I remember the first time Fulton asked me if he would be able to walk when he was an adult. I was getting him ready for bed, when BAM I was hit between the eyes with his innocent question. I remember answering him in a matter of fact way, “No, you’ll always need a wheelchair.”, and then getting a bit teary about it later as I recounted the episode to my husband.
Since that first time, Fulton and Teddy have asked Tony and I numerous times why they can’t walk, why can’t we just teach them to walk, and several other variations. As painful as these moments can still be for me, I realized very quickly that they were nothing of the sort for either Fulton or Teddy.
Through these impromptu Q&As and through reading blogs of people living with physical disabilities I realized that my perspective of my children’s handicaps is uniquely my own, and should not be taken by an outsider as to how my sons perceive themselves or their abilities. I struggle as a parent raising a child with special needs. I do not struggle as a handicap person myself. Right now, I can speak on my blog about what it’s like to be me and I can share life from Fulton and Teddy’s perspective as they express it to me, however, I need to be careful that I do not taint their story with my own emotions.
Today’s post is important because when it comes to the handicap community, we able-bodied folks are too likely to view them with pity or sadness because to us, in our healthy bodies, being stricken with whatever ailment is before us seems too great a burden to bear. As a special needs parent, especially one who sees the milestones of her healthy children side by side with the limitations of her disabled children, I need to watch that I do not think my sons are any less happy than their siblings simply because they can’t do all the same things or require doing something differently. I want this post to remind you that Fulton and Teddy, and people like them, can speak for themselves and even I, as their mother, cannot fully share their experience. My stories may be about them, but they’re not Fulton and Teddy’s stories. My feelings may run the gamut, but they do not reflect how Fulton and Teddy feel. If my life is overwhelming, hard, frustrating, or upsetting, it is because that is my subjective opinion, and maybe I should check myself to make sure those feelings are appropriate, rather than assuming my life calls for such emotions. If my sons are not overwhelmed, frustrated or sad with their situation, why am I?
When Fulton and Teddy now ask me questions, I realize they’re asking with the same intention of any five or eight year old who casually asks, “Why is my hair brown?”, “Can I be a famous singer when I get older?”, “Why can’t I fly?”. Their disappointment is just as fleeting as when I tell them, “No, you may not make explosives.” or “No, we can’t have ice cream for diner.” *I* still feel a twinge of sadness because they won’t ride bikes or play football or experience many things my older children take for granted, but thus far, they won’t feel sad unless I imply to them they’re missing out on something great.
Instead, I focus on the ‘cans’. Playing in the NFL is impossible for them (and honestly a long shot for anyone right?) but the NFL hires lots of people, not just players. We’ve watched games and casually mentioned all the people behind the scenes. Fulton currently loves meteorology, and I see no reason we can’t outfit a handicap van for tornado chasing or maybe watch him become the first network weatherman to use a power chair.
It doesn’t mean I lie to them and say “You can do anything!!” because that’s simply not true. Fulton and Teddy do have limitations but rather than focus on all the ways they’re different, I prefer to look for how their interests can take them as far as anyone else. For children who, due to severe disabilities will not live to see adulthood or be able to function as adults, there’s no reason the time they do have can’t be filled with love. Children can feel love and joy from a bed. If we choose to see each moment they have as a drain, a waste, or pointless suffering, then that speaks to our perspective, not our child’s.
Obviously, as they get older Fulton and Teddy’s questions and responses will change and mature; however their feelings should be their own, not influenced by my emotions. I see parents who want to do everything to give their child a “normal” life while completely ignoring the fact that not being “normal” can still be pretty great. I’ve told my boys that yes, there are medicines in the works that may help them become stronger but they greet such news with a brief smile and another question about Transformers. Not getting stronger, not walking, not playing professional football are all abstract ideas to them, rather than the concrete realities I see. People still pray desperately that the boys will be miraculously cured, but I know that regardless of any miracles, medical or divine, Fulton and Teddy are happy, and can live happy lives. It’s doesn’t do any good to suggest to them, or any other handicap person “Wow, look at [newest medical marvel]! Wouldn’t it be great if it could help you walk?!” because it implies their life is somehow lacking because it is spent in a wheelchair, (or on a ventilator, or with leg braces, etc.). Just because their life seems impossible to us as able-bodied people, we shouldn’t assume that people who rely on medical intervention can’t be happy. This prevalent attitude is why physician assisted suicide is gaining traction; better to be dead than need medical intervention or, *GASP*, assistance from other people to go about your daily life. It’s also why women abort unborn babies who might be physically or mentally handicap; why bring that child into the world to “suffer”? Is it so hard to believe that disabled people aren’t suffering at all?
I see a variety of parents in the online groups I frequent. There’s those who always refer to their children as suffering, homebound, missing out, and constantly detail all the problems of their child’s diagnosis on social media. Then there are parents who talk about the joy their child brings to the world, who share the smiles and funny stories alongside the request for prayers when necessary. Same diagnosis, different parents; who’s right? When we view our child’s disability through our own fears, anger, sadness and frustration, it’s easy to see our children as victims and to feel hopeless. We see everything they can’t do, or won’t live to see and I wonder if we miss all the happiness that’s actually present. Yes, parenting a physically or mentally handicap child has it’s challenges, but just like there are pessimists and optimists for every situation in life, I cringe when the pessimist special needs parents seem to be the one’s speaking for their children. It’s made me mindful of how I talk, or vent, to friends lest anyone get the impression I’m anything but blessed by Fulton or Teddy. I face challenges, but so do all parents. I shouldn’t be in a contest with the rest of you to prove my situation is the hardest and my kids are the worst off, because then my family still loses.
My boys are happy despite using wheelchairs and relying on others for their care. When they are sick, or stuck inside, or unable to participate, or hospitalized are they suffering more than other children? I might allow myself to occasionally think so, but I know my boys have felt pity for children whose situations we would think trivial in comparison. If you could hear the way Fulton nonchalantly talks about his hospital stays, having a g-tube, or using a bi-pap you’d understand how he has accepted these things as part of his normal. Life doesn’t suck because of any of these things, they’re just part of who he is. All handicap people should be able to easily find medication and equipment that helps them live life comfortably, to the fullest, and not feel ashamed for relying on those treatments.
People are not burdens or hardships to be endured. As a species, we have the intelligence and the medical know how to care for people of all abilities and at all stages of life. If we choose to complain about those in our care we need to admit that it’s due to 1.) problems in our healthcare system that make administering care difficult 2.) our own failings as fallen human beings and 3.) not related at all to the people in our care, who only want love and support like the rest of us.
People read my blog to learn what it’s like to raise a child with special needs. That’s great. However, I encourage you to read the blogs of people with special needs themselves. If you are pregnant and have gotten word your child may have a physical or mental disability, go out and meet people with that same disability. Don’t listen to the statistics or the naysayers who, more likely than not, have not spent time with a disabled person.
I can only be a positive mouthpiece for my boys for so long. At some point, they will have to tackle the world and it’s assumptions about who they are and what they can do, for themselves. It will be hard, but better to have them go into the world proud of their normal, whatever it looks like, rather than be ashamed of their perceived shortcomings or concerned with becoming a burden. And if I can spread a little bit of awareness to make a few more people feel a little less sorry for them, all the better.
This is beautiful. I’m ashamed to say I’ve never thought of things from this perspective before and really appreciate you sharing it, Kelly.
What a beautiful post, Kelly! Thanks for sharing.
What a perspective check. Thank you for sharing!
I don’t do SQT that often anymore and so it can only be the Holy Spirit that brought me over here today. Your post is spot on, and I hope it gets lots of reads. I’ve been blogging a fair amount about disability lately, the beautiful as well as the not-so-lovely moments (cough-orthotics-cough), and I think people tend not to see the whole picture. It’s our responsibility as parents to witness to the beautiful complexity of the issues we face, and to let our children witness in the ways they are able. My daughter is highly unlikely ever to have a blog, but I know she leaves an impression wherever she goes, and most of the time it’s a sweet, happy one. We try really hard to stay out of her way and give her as much latitude as possible to connect with people and be an ambassador for Down syndrome. Sometimes I think I am doing wrong by laying her life out there in public. You are really encouraging me today.
Since the rise of euphemizing euthanization as “death with dignity,” people with any sort of ailment are being pressured to consider their lives of less value. I appreciate the advice that we as parents are not to fuel that incorrect worldview. Thank you for sharing!
I would love some recommendations of blogs written by people with special needs.
OK, seriously, I was screaming YESSSSSSS!!!! as I read this. My coffee cup was vibrating. 🙂 All of this, Kelly. This is so, so true.
My life is my life–and it is what it is. When I talk about accessing my port, or the night the PICC line bled out all over the sheets, or going to the hospital, it’s just part and parcel of my life!
This is the biggest reason I’m writing my memoir–because the ones that exist are from the perspective of parents. And parents, while wonderful, are not me. They aren’t experiencing it the same way I am.
Fantastic post, Kelly!
Beautiful and insightful post. I have a son with several developmental delays (ADHD and SPD) and I was born with a neural tube defect called Spina Bifida. Your post is so important because there are so many out there that struggle with disabilities, some noticeable and some not. My son struggles with his speech so it is easy for him to be labeled. My disability is not seen so people assume that I am fine although I struggle with pain and not allowing my disability to affect my family. Thank you for a great post! I will keep you and your family in my prayers!
Kelly, thank you for yet another awesome post and epic reflection! I think this is really helpful to hear. Plus, I think your words are so applicable for any person even if disability isn’t in the picture. I think we all have had instances of projecting our feelings towards an experience (parenting, childbirth, pregnancy, etc.) onto another person and expect him or her to feel the same way.
So well said! I’m going to take you philosophy and flip it for my family. I’m the one who is disabled, and I get annoyed when people apologize for talking about things I can’t do. Just because I’ll never ride a roller coaster again doesn’t mean I don’t love to hear about the newest one at a nearby theme park. My like is not less, it’s just different!
Thank you so much for this post. It is very helpful!
Kelly, you blow my mind again. Thank you for your wisdom!!!
I loved this post. Even though I don’t have a special needs child, I’ve thought a lot about people who do (and those who tragically choose to abort children who will have special needs.) My thoughts meander along the same lines sometimes: that to someone who’s always lived with the disability it’s not so much tragic as it is just normal life. Like if an alien visited earth and said, “You need to eat every 6 hours? And if you don’t eat for a week you DIE? That must be HORRIBLE to be so dependent on food.” Well, we’ve never known anything different!
This is so beautiful. Well said and wonderful insights to share.
Thank you for sharing this message! I wish I had your gift for words so I could explain how I appreciate how you challenge the way I think about disabilities. I also wanted to mention I once met the statistician for an NFL team. What a cool way to use a math degree!
Well said. Thank you for writing this and helping me see a different perspective. God knew what He was doing when He gave your children to you!
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