That was a question I got from a random stranger today as Chloe and I were on a walk at a park. Chloe was in her wheelchair and she was having more myoclonic jerks than usual. I kept grabbing her hands to calm her down, then helping her bring her head back up.
I was a bit taken back, then responded with a smile saying, "It's a privilege."
The stranger looked at me like he thought that my response was the lamest thing he had ever heard. To which I thought, 'Whatever, Dude.'
During the rest of my walk, I thought about what I wish I could have said to that guy if we had the time. I wished I could help him understand our life and how much we don't want his pity, but hope for his ability to see Chloe as she truly is, such a special and unique individual.
I decided that if I could, I would start by showing him this picture....
Isn't she beautiful sitting up? Tilting her head just so and showing off her beautiful blue eyes.
What the picture doesn't show are her Grammy's two hands on her left side and my two hands on her right side holding her up. What the picture doesn't explain is that she was only able to hold her head up like that for a fraction of a second. What the picture doesn't show is the fancy camera that was used with an extremely fast shutter. It doesn't show the time the photographer spent on Photoshop to edit out our hands and blend in the background. It is only after you find out these things that you see how her dress is ruffled up on her left side from where a hand actually was. But all the time and effort was worth it to have this picture, this moment frozen in time.
I would explain that 'how we do it' is much like this photograph.
Just as the picture captured only a fraction of an instant and didn't explain all that went in to getting that photograph, the stranger passing us in a park and watching us for a few moments doesn't give him the full scope of our life.... the challenges AND the blessings.
Also, just like the picture, there are unseen angels holding us up and giving us help. Some days we are each others' angels. Many days our family and friends are the unseen angels. But always there is a heavenly presence with Chloe. It is not visible to most people.... it has been edited out by the chaos that is all around us, but angels are indeed there.
I would ask him to look into Chloe's eyes to see how much love and wisdom she gives, rather than the burden he saw her as.
32 comments:
beautiful post and beautiful pictures, edits or not!!
Beautiful post! And I think your off-the-cuff answer was just fine for the moment. I doubt he'd have been able to really understand how the tiny moments of grace get your through the hard parts and make the sweet parts so much more so. She looks lovely in all her photos, hands or not!
Tara, you are amazing!
Tara, I just love that photo. Thanks for sharing with us your joy. You are amazing!
great post and beautiful picture
Seriously. People have commented like that to me in the past. "I don't know how you do it" or "I wouldn't be able to do it" or "It must be so much work".
It is a lot of work. And honestly? It is the best job in the world. Being Peanut's Mom makes me - ME. :)
I just *HATE* the fly by night comments strangers throw out at you! I am not very cordial about them, either, as the people who make these comments already have set opinions and I don't want to waste my time when I know they won't change.
In this case I would have said - do what? walk at the park? That's simple, I just put one foot in front of the other and next thing you know I'm walking along the path. Ummmm.......this is probably the reason I got into trouble a lot growing up, too because I respond this way to loads of situations :-)
Just LOVE that photo of Chloe!!!!
I often wonder how you do it, Tara. I don't mean it to be rude or offensive. I've met Chloe, and I've seen you with her. I know that it is not a burden, and I know what a blessing she is. I just see such a great strength and power in you, and I wish I had that in myself. But then I think that it is probably there. We are all stronger than we think we are. I hope that you know how much I look up to your strength and wisdom, and don't think less of me for wondering how you do it. I know that is with the help of angels, and I am envious of the spirit that you get to feel everyday being in Chloe's presence. I see it in her eyes, even in the photos. I love you, Tara!
Love love love this post. It *is* a priviledge, maybe only given to those who He knows can truly appreciate it. Great post Tara, thank you.
I love your answer!!! Right on mama!
i love everything about this! everything!
They just don't get it, and never will. I love this post, Tara. Beautiful!
Oh, Tara, I just loved that. And wow, Chloe is so gorgeous in that photo—it looks like a magazine cover.
I love this. And I love the picture and the moving story behind it!
Beautiful! You are soo lucky to be trusted with soo much. May God always grant you the power to see Chloe for who she is and to love her for what she can be.
Oh yeah, that was Jeri Dawn...Sorry. Forgot I was on Jason's computer.
You have all the wisdom, strength and power that your little girl does. Amazing girls you are and what a lovely post.
I wish I had your articulation when it came to strangers and their comments! I will file this one away for future use.... your answer was perfect!
i'm sure i've asked you a question like his somewhere along the way. i would ask you how you do it because i worry that i'm not as amazing and positive as you, some people aren't as great of a person/mom you know?! !!!;). but being a mother makes me realize i would do anything for my child. i loved your answer, you said it all in one sentence. he'll probably always remember that moment no matter his reaction. i know i'll always remember that answer. that and one look at chloe's beautiful eyes makes my heart melt
I love this post, Tara. I don't know what else to say. I just love it.
Very very well put.
"how do you do it", and "you're so strong" are 2 of my LEAST favorite things to hear.
There is no 'how' involved. We just do... and we're better for it.
period.
Just found your blog - Chloe is beautiful and inspiring, and your story is far too familiar.
I'll be back.
Lots of love,
Wow. That was such an amazing post. I can tell you that I have felt the heavenly presence when Chloe comes into the room. She is an amazing girl.
Great post. I always hate that question. We do it because it's our child. We do it because anyone else would do the same for their child. People tend to forget that we don't choose these lives! Of course we'd prefer for our child to be healthy, but healthy or not, we love them 100%! And I can so relate to the hidden hands holding her up and the head control that only lasts a second.
I found your blog through Beth's blog... Odd Girl Out.
My daughter has CP and I get your post through and through!
Your daughter is beautiful :)
It IS a privilege. You answered perfectly.
Beautiful girl & Beautifully said.
Thank You!
That is my favorite word to use when I explain Caleb, too. It is a privilege. every. day.
beautiful post, Tara. Thank you! xo
Beautiful Tara!! Like it is a privilege to have Chloe in your life, it is a privilege for me to know you and experience your journey through your eyes.
Very moving and a gorgeous picture. I just smile these days when I get similar comments xx
This post was Amazing! Thank you for sharing. I feel blessed reading about your lives, so I can only imagine how you feel in those special moments.
That is definitely a gorgeous picture; worth all the effort!
I absolutely love your post; the comparison of life with the picture was truely inspiring. So well said!!
I love this post, I must admit it has me shedding a few tears because I totally get what you mean when you talk about looking in Chloe's eyes. My husband and I both could totally glance into her sweet soul after seeing her for just a moment. Her smile is one of the most captivating and truly beautiful smiles I have ever seen. She (and you too!) are an inspiration to so many and I know that it is a honor for you to be her mom. If someone else does not get that (as annoying as it is!), they are the ones that are truly missing out and I feel sorry for them!
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