This weekend was really difficult for us.   Jon, Rory and I went to a local K9 Festival and had a great time seeing all the dogs.   There was only one problem; Rory's shoes were quite a distraction for many people.   She was in her bike/stroller so if people saw her from one side, they would only see her one big shoe. We had so many people come up to us talking about her shoe; the usual comments: how they have never seen platform shoes for babies, if she has trouble walking in her platforms, where they can find heels for their babies, and of course how cute it is.   Jon is better about shaking things off than I am, but after a while these comments start to get to me. its rory that's cute not the shoe Which brings me to today's post.   There are a few things that people have said to me that have made me feel nothing less than awful.   I just want other people to know.

  What did you do to cause this?  

I know that as a mother of a child with special needs, I have guilt about Rory's leg.   I know that there was nothing I could have done differently during my pregnancy that would change Rory's getting Congenital Femoral Deficiency, but I still have the motherly feelings of guilt that there was something I could have done; because she was in my womb.   The last thing a mother wants to here is that they did something to harm their baby- trust me, they have enough guilt, even if they had no control over what happened. I remember the first time an older woman said this to me (at a church no less).   It killed me, I came home and cried for hours.   I wasn't sure if she expected me to say that I smoked during my pregnancy or what (I did pregnancy by the book) but I do know how much it hurt. All I know is that if I could have done something to prevent Rory from getting this, I would.   I would cut off my my leg and give it to her, I would do anything I could to help that little leg grow to be the same size as the other leg; so for someone to ask me what I did to cause this…It just hurts.

 It's so cute! (whatever the disability is)

I know Rory is adorable, and that everything about her is adorable; but sometimes it is really hard when people tell me how cute her shoe is.   Having people tell me about how cute it is makes me feel like people think it is a privilege to have a special shoe.   That her shoe is some fancy accessory, other people want to have.   I wish that Rory would never have to wear her shoe lift again, that we could go to any shoe store and pick out any kind of shoes there and Rory could even wear them home. I know people want to just try and make me feel good, but hearing about how cute it is is difficult to hear.

The last thing, isn't saying anything- it's an action: a stare.  

I   am pretty sure any mother of a special needs child would much rather have someone ask a question about their child’s condition than have someone stare.   Sadly, many of the stares come from adults, other kids seem to always ask. When we were leaving Florida from one of our visits to Dr. Paley, there was a husband and wife couple across from us in the airport.   The wife couldn't take her eyes off Rory's shoe.   After a few minutes, she nudged her husband and whispered, look at that baby's big shoe.   Just what every mother wants, people looking at your child like she belongs in the circus.   I was a few feet away from her and would have much rather her ask me about the shoe. I always welcome questions about Rory's condition because I want to make people more aware of her Congenital Femoral Deficiency.   I think other mothers of special needs kids would much rather answer a question than have their child being stared at.   No one wants their imperfections pointed out (I am not sure if imperfection is the right word, since Rory is completely perfect in my eyes…but for now it will have to do). Just remember: Mothers are extremely sensitive with their children.   Before you say anything to a mother with a special needs child, just think about if you would want someone to say that about your child (or loved one).

It is hard to be a mom….especially when your child has special needs.

Here are some other posts with mom in mind:

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  1. Thank you for posting this. I grew up with a mom who is a musical therapist and thankfully she taught me the appropriate way to respond through her actions. I often feel this way as a mom–on the receiving end of negative comments and stares– and none of my three kids have special needs! I believe there are people out there who just make it their job to judge other parents. This served as a nice reminder that we’re all in this together. Parenting is HARD work and I have the highest respect for those dealing with not only the challenge of parenting but children with special needs. Only the STRONGEST of parents could handle this great gift and you deserve nothing but support and encouragement.

  2. Hi Havalyn,
    I agree with what Katey said – your post helps me be a more empathetic person. My 4 year old is always very curious and I sometimes feel I don’t know where the line is – whether I should ask the person about their disability or just try to explain to my son what I think is going on. Your post helps me to know that is ok to ask. Thank you!

    1. Me too. I came across this post the same day we saw a “small daddy” and his children out for dinner. The son is a little person too, but I had never seen the dad. My three year old was the one who pointed out (verbally) the small daddy. All I could think to say was that everyone is born differently. Now I want to start a website called How to talk to your children about…

  3. I had my twin boys at 25 weeks. Literally, 10 minutes into their 25th week they were born, weighing 1lb 15.9 oz and 1lb 13.5 oz. They both had multiple complications, ranging from PDA, bowel perforations, under developed lungs and ROP. They both have rather large scars on their bellies from having a ileostomy, due to bowel perforations. In case you don’t know, their intestines were not ready to process things like breast milk and medication, so they developed holes in their intestines. They had surgery, where they went in and disconnected their bowel and their food went from their stomach into a bag. They also, had to have surgery to be reconnected. When I brought the first twin home, he was still on oxygen. I remember taking him to the grocery store and getting the stares. One lady said to her husband that’s what happens when you smoke while pregnant, which was totally not the case. I was so mad!! Little kids at the pool always ask “what happened to their tummy?” which doesn’t bother me because there just little kids. THE ABSOLUTE WORST THING TO HEAR (in my opinion) is from people that saw them when they were first born and then saw them months later or see them now. It never fails someone will say, “AHHH, THEY ALMOST LOOK LIKE REAL BABIES” or “THEY LOOK LIKE REAL BABIES NOW!” for some reason that bugs me more than anything! It would make me cry at first but now I just get really annoyed!


  4. Well said Havalyn. We need to hear words like this to make us think about our actions. You are a wonderful spokesperson for mums of kids with special needs. Your daughter is so lucky to have you!

  5. Thank you for sharing these, Havalyn. I think they will help me be a more empathetic person when I meet mothers of special needs children.

  6. Havalyn- out of all the QM’s I love reading your post the most (shhhh don’t tell the others.) I say that because not only are you a crafty mom but a mom who lays it all out there giving us all something to learn about life. I see that Rory is a blessing, God only gives us what we can handle and you are sharing Rory to make us all more aware of how we need to act and not act.

    My twins are almost 18 and back in the day they were seen almost as a circus attraction. To this day, people still treat them differently than my single child. You don’t even want to know what all people asked us and they did and still do stare and ask crazy questions and say really off the wall things about my carbon copies, which they are NOT!

    So I have learned that people will always be this way and the only thing we can do is learn to let it roll. We can’t control how people act/treat us but we can control how we respond and act. You are of course taking that one step further and teaching us what it is like to be a mom with a child with a special need and how we are to act. Keep it up. You rock.

  7. Thank you for this post, I couldn’t agree more. My five year old son has a speech delay. I always get the “why isn’t he talking?”. Or people who repeatedly ask him the same question over and over and don’t give him a chance to respond. My hubby says I’m too sensitive when his delay is brought up…but, hey, that’s my baby and I agree with you that we are more sensitive about our kids.

    Many blessings!!

  8. I was born with a visual impariment in both eyes – my right eye was abnormally small and my left eye moved around constantly. Today I have my own children and as a mum, I often wonder how my own mother must have felt when faced with so many stares and thoughtless questions. I expect that my children will have to fend off stares at and answer some questions about their blind mother some day as well … Thank you for sharing your feelings on this subject. I hope it will reach many people and help them to be more considerate when dealing with people with special needs.

  9. You blogged about something that I’ve been thinking about blogging. THANK YOU! Just the other day at the grocery store a grown man YELLED “What did she do to her leg????” Let’s just say that he actually yelled it not once but twice and loud enough for almost everyone to start staring at us. I turned to him and said “She is partially paralyzed.” I wanted to yell back at him “It’s none of your business!” I don’t mind if people ask in a sincere way that is humble enough and quiet enough. I actually appreciate it when they ask, because I feel that they aren’t just assuming what is “wrong” and actually trying to know in a way to help her or just satisfy their curiosity without assumption. People just need to know that there is a way to ask. Keep it soft and gentle.