Grace for Rett » Grace's Life with Rett Syndrome

Sabotaging myself – I can’t take her picture

Every day, I get surprised by some new feeling or difficulty I didn’t expect. I find myself avoiding certain events, opportunities or conversations and upon reflecting back on them, realise that I’ve done it subconsciously.

For example, it’s been a very long time (probably 7-9 months) since I’ve taken photos of Grace. I’m a professional photographer and I periodically take the boys out for a session, but I do it less with Grace.

My friend, Toyha, and I joke about way we can make portraits of Grace looking normal, happy and able instead of cross eyed, upset and disabled. As she gets bigger and her frustrations with herself are more pronounced, it’s getting harder to be tricky and take photos of her which look happy and normal like the ones you’re seeing here in this post.

So Toyha and I have twice scheduled to take her down to my studio to do a portrait session and twice something has stopped us and twice, I have breathed a huge sigh of relief.

But this pains me. It really hurts that I wouldn’t want to go out and do this with Grace since my entire career and passion is focused on doing it with other children. But this is one of those things I realised I was subconsciously sabotaging. And I realised that I’ve been putting it off for fear of failure. For fear that no matter what we do, I won’t be able to get the shots I used to with her and it will further ground into my reality how very disabled she really is when I’d rather just pretend that she’s not.

Daniela Pacheco - March 13, 2011 - 10:25 pm

I’ve noticed that for me is easier to photograph others than my own family too. I think maybe we need to accept our close ones as they are and not to try to capture perfection. Maybe if you practice taking her shots being just as she is, your photos would reflect her true soul.

Stephanie Bowden - March 13, 2011 - 10:33 pm

Elizabeth, I’m the mother of two sons who both had genetic anomalies, and I can totally relate and understand where you are coming from. My boys disabilities were much more obvious, and I struggled with taking their pictures because they didn’t look normal. They both passed away, one at 18 months and one at 5 months, and it saddens me that I have just a few pictures of them. I wish now that I’d taken 1000 pictures of them how just they were instead of the few that I have. Grace is adorable and beautiful just as she is, and though I’m sure you’ve embraced the beauty that lies in her imperfection, you also have the ability to let that beauty shine through in any images you take of her! Good luck, hugs to you!

Gaye Edwards - March 13, 2011 - 10:57 pm

My heart aches for you. But as you say, you are a professional with a passion for child photography. This may not be PC, but maybe step back from being this special little girl’s mummy and step into your professional shoes. How would you treat her if she was brought to you by a client? I feel you would welcome the challenge and become absorbed in capturing her personality in whatever way you could. She is a true individual and your skills and your love of children are just what she needs. It might take longer, you might have to prepare a different game plan for this little individual, maybe go somewhere where her concentration would be away from you and the camera. Catch photographic glimpses of her personality and character – you don’t always have to see the face full frame with perfect eye contact to capture the soul. You would know all this, I’m sure, but just need reminding. I appreciate it will be difficult to “step back”, but she and you are worth it. xx

susan blatchford - March 13, 2011 - 11:07 pm

dear Elizabeth; I can only imagine how much courage it took for you to face those feelings, and especially to write and post them. This must be a huge step for you. If sharing with us grants you ANY relief or comfort at all, please know that we’re here as real support.
We have all seen Grace’s true spirit in her portraits before and when you are ready, we will see it again. Until then, know that you and your family are loved as much as an online relationship can allow. I am awed by your openness…
God Bless.

Beckie - March 13, 2011 - 11:20 pm

How sad this disability is … I assume the two pictures showing are of Grace and what I see is all in her eyes… her personality. Capture her as she is – using your talent to tell her story…be her voice. God Bless

Cindy Morrison - March 13, 2011 - 11:29 pm

I work as a pediatric feeding therapist (SLP) and must tell you that you are more amazing than you give yourself credit for :). You are the hero that we get up for, work for, try to give our strength and energy to and further our study to help. I can’t say that I understand first hand, but I can say that I know many parents of disabled children…and when I look at the photograph above…I see nothing but a beautiful little girl who looks so clearly loved :). You are not alone and their are more people that are silently cheering you (and others) on than you could ever know. Sending a hug and prayer.


Evy - March 14, 2011 - 11:33 am

As someone else who take photos, I find it so much easier to take photos of other peoples children for the one reason that they respond better to me. Our own children are more likely to take bad moods out of us as their parents but not a stranger so they listen and sit still.

My friend walked into my house and was shocked to discover that I have not framed any of my own work. Question is why and I don’t have the answer to it. But I do take photos of other people and pride myself when they want to frame my work – yet I am not framing photos of my own children.

Now that you have identified your failing – you will action it and I do look forward to viewing photos for your little girl

admin - March 14, 2011 - 11:49 am

Thanks for the lovely comments, everyone! Have taken some snaps of her today but of course, she was sitting in one of her special chairs. I’d love to get her out of equipment, though, and find a way to photograph her without the trappings of her disability.

Ross Miles - March 14, 2011 - 11:32 pm

I think that your photos of Grace are beautiful and collectively show much of who she is. A number of her photos show her looking directly into the lens. Whether that’s just connectng with you or not, it also allows the viewer to connect with Grace and to get a sense of the curiosity she is showing and a sense that she wants to connect as well. The one which I found the most evocative is the one shot through the bars of her cot and which you have given a mono treatment. Your photos show an acceptance and a love for who she is and appear to have been taken in ‘her’ spaces and perhaps that’s the key. I spent 37 of a 40 year teaching career working with children with disabilities and understand the possible constraints of a studio setting. Best of luck with it but the photos I saw in Flickr tell her story wonderfully well.

Papa - March 15, 2011 - 1:02 am

Amazing Elizabeth- You have such great insight and you are not afraid to share your thoughts and fears with your readers. You are an inspiration to all of us.

Liz Wright - March 17, 2011 - 11:58 pm

Elizabeth! I know exactly what you mean about the pictures! It gets better…I stopped taking Sofie’s pics at around 2 years. She is now 8 and I have found HER in photographs again! Perhaps you have already found your angel again? Keep clicking! Our angels just keep getting deeper and more gorgeous as they grow!

~ Angelic ~ » Amazing Grace - April 5, 2011 - 9:19 am

[…] Sabotaging myself – I can’t take her picture […]

Margaret - November 10, 2011 - 3:02 am

I’m so glad I came across this post! I feel exactly the same way. My daughter has Rett’s and was just recently diagnosed. I feel so guilty for not taking more photo’s of her. I also feel so guilty for not socializing her as much as I could. I have so many feelings that I need to work through. I appreciate your honesty and it’s nice to know that I’m not alone. Thank you

F a c e b o o k