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Wednesday, September 26, 2007

From the outside in

I have been thinking about people’s reactions to Ellie and our story and disability for awhile and wondering how to put this but…I am starting to see that in our case anyway, it looks worse than it is from the outside looking in.

I have said that to people and they don't believe me. And I can’t speak for anyone but myself.

But more often then not when people hear our story and all its gory details or look at our situation they sometimes say and I am sure often think, “Thank god I am not them!” Or “That’s horrible!” I know this because I have thought these things when I have been seen other kids with disabilities different or more severe than Ellie's. So I am just as guilty as the next person for doing this. Lately, however, I am learning not to judge things I don't truly know about or have the intimate experience with to really understand.

I can honestly and easily say, I would not wish prematurity or brain damage on my worst enemy. There is nothing glamorous or funny about it for all you fakers out there(so much in that last statement for another post!). This has absolutely been the most difficult thing I have ever had to live through in this life. And if you really knew me, which most of you don’t, you would know that, that is saying allot.

However, I do wish to make a distinction about my life today, our life as a family as it is these days looking from the inside out.

I have had people say off color things to me recently like my PT for instance. I told him how great a Dad Dave was with Ellie and I said, “Ellie’s a lucky girl to have such a great Dad.” And his reply was to scoff. He literally made a tut sort of sound and said, “Well, she doesn’t have that much luck.”

Then the other day while I was doing strength building he was obviously thinking of my situation again and he said, “It’s so ironic that a mother and a daughter would both get club feet but from such different causes.” He said it so lightly, breezily as he was kicking a soccer ball around waiting for me to finish the exercise.

Please note that I like this person. He is an excellent PT, a good person, he seems to care about his patients and is generally kind. He asks about how Ellie is doing every time I see him. He used to work in early intervention. He is not yet a parent but he is of an age and in a certain amount of time in his marriage that he might be thinking about having kids. He also might feel a little overwhelmed when his natural inclination would be to put himself in my shoes. Because he is an empathetic person though at times he says things that are tactless as I have mentioned.

He is a good example of how from the outside people see that Ellie is different. They see me lugging her around, her not walking, her drooling, her head control not being 100%, her wondering eye, her vocalizations, her dystonic movements. They see that she goes to a different school. They don’t see us at the park much or running around on the street (well not yet – wait till next summer when Ellie is up to speed in her Pony walker!). People see the ambulance rushing us off to hospital. They see our house dark at other times during hospital stays. They see us feeding her through a g-tube and giving her medications.

From my perspective I have a totally different view. A dual perspective if you will because I am aware of all I have described above. Mainly, though, I see something else every waking moment of my life with my husband and daughter.

It is the inside view.

I see this beautiful little girl, with skin that is the color of my bolero blush roses, green-eyed and blondie curls who seems to soak up the sun and emanate it from within no matter what the lighting. I see her cheeky grin and find myself striving to make her laugh just to see her smile and hear her giggle which is the cutest thing I have ever heard. I see a person who opens my heart the instant I even think about her.

From the inside I have a daughter who needs me, who challenges me, who I have to make do things she doesn’t want to do like brush her teeth and tummy time.

From the inside I am a mom who worries about her child (just like all good mothers do). From the inside we are a very happy family: Dave, Ellie and I. We enjoy each other’s company so very much. I look forward to when I get to be with both of them. I look forward to when I pick Ellie up at school each day just to get to be around her. I look forward to helping her overcome her challenges and accomplish what she will - like any mother. I can imagine life without her. I have been forced to do that when she was on the edge. When I do that I honestly can’t imagine how I could go on without her.

So, I am not making lemonade out of lemons or anything stupid like that. To say that is to dimish my life and overlook the enormity of this experience, the wonder that is my life. I am also not in denial. If you read my blog you have heard me be quite honest about lack of sleep and having to make so many phone calls and fight so many battles.

I AM fully immersed in my life which, with all it’s challenges, is pretty good and particularly so for Ellie’s presence in it.

So from the outside you might see what appears different or even lacking. But that is all an illusion. Yes we are different. But no, there is nothing lacking here.
Our normal is perfect in my eyes.
Picture descriptions from top down:
1. Last Sunday, Ellie at a fairy party laying on a big stuffed dog in a fairy tent stretching her wings.
2.Ellie and Mama at the same event reading a book in the fairy tent. Thanks to Haley for a rare pic of me and Ellie!


Lori said...

Kathryn- I just love your honesty and your outlook. You don't sugarcoat the aspects of your life that are difficult, but you are also fully present to all that is so beautiful and amazing in your life. Really, that's how we all need to be.

If I am honest myself, I think one of the reasons I have followed your story so intently is because it gives me a window into what might have been. I know that if by some miracle our twins had survived, they would have likely faced many of the same challenges that Ellie has. I have wondered many times if I would have been able to be the mother the needed? But, when I look at Ellie and I read your words, I know I could have been. And I know I would have loved them so much, no matter what their disabilities. I wouldn't have been perfect. I know I would have had my moments of struggle and desperation. Maybe I wouldn't have been the mother they needed. But, in the end, I would have liked the chance to try.

Stacey said...

That's something I think about a lot too... I can talk to some people knowing that they don't feel uncomfortable when I talk about Ace's disabilities, but other people seem to clam right up and want to move quickly on. I think that people don't realize that this is a part of our every day lives and we're used to it - to them, it's like we're living in pain and trauma every single day.

Kathryn said...

Lori- thanks. I am sure you are the mother they needed and in that sense perfect and I am sure you would have loved them as you still do no matter what. I am glad our story gives you some solace. I love your story as well for the same reasons - especially the part about baby girl.

Kathryn said...

Stacey- that is so true. And because of that it can be really isolating. I have said so many times to people, it's ok - I am ok with it now and our life is good. I hate having to justify that - like you are trying to get them to see that your kid is great and the love of your life versus it just being a given like "normal" parents.

Jacqui said...

Hun, you have me tearing up again. Great post.

Kathryn said...

Thanks Jacqui!

Emma said...

I too am trying to learn not to look at another's situation and judge it without knowing the true facts and their perspective on them. But it is really hard. Much harder than I had anticipated. I think it is slowly beginning to help me rationalise the way others react to me and my chair though. Emma

Lisa said...

I think D and I get this same kind of "outside looking in" thing about our family. I know the day is coming when the kids will hear about it from their peers or other adults about how bad or hard it must be to live in our family. We really don't feel 'unlucky' all day long. We are fine. There is no way to convince others of this, so I just don't even try. I just try to live my life and maybe they will see a bit of our happiness through example.

Regarding your PT, I think I have gotten this attitude a lot with certain professionals "in the bizz". They might be good at their job and well-meaning, but personally, I don't stand for those comments. They are condescending and patronizing. I think that people that work with people with disabilities need to be over that "outsider" attitude already and treat their clients as equals. Empathy for a tough situation is one thing, but Ellie does not need to be told (or thought about) as how 'unlucky' she is by a person she is forced to spend time with and get critical assistance from.

He might not even realize he has this attitude, and I'm sure means well, but this is a big peeve of mine. Professionals in the field need to get over their patronizing attitudes (which I suspect they build to give them a self-esteem rush about working with this population) and start treating their clients respectfully. Telling someone (or their mother) that "pffft, she doesn't have much luck," is just condescending and a PT should know better. I hold them to higher standards than your average Joe on the street.

The danger is, that if they don't have the full respect for their clients life that they deserve, they start (even subconsciously) making treatment decisions based on that attitude, which sometimes can undermine what is best for the client.

I'll get off my rant, now, but that kind of subtle discriminatory attitude is a really pervasive problem among professionals. I will usually call them on it. Many of them really do WANT to treat PWD with respect, but don't realize that they aren't.

Lovely post otherwise, though. Ellie is very LUCKY little girl with great parents.

Kathryn said...

Emma- it is always a difficult thing to do - try to see and not judge. I do it still.

Lisa- just to clarify - he is NOT Ellie's PT - but mine for my knee. I totally agree with you - it is condescending. I was kind of dumbfounded both times and annoyed. But didn't say anything. Next time I hope to say something maybe - though - you hit the nail on the head - it's very hard almost impossible to convince someone things are ok and your life is good sometimes. But - no if he were Ellie's PT with that sort of attitude he wouldn't be her PT any longer. Ellie's PT is awesome and all about Ellie's strengths versus her weaknesses. I think a kid would pick up on a negative attitude like that and that would be really bad for her self esteem. Great comment though!

BusyLizzyMom said...

Beautifully said, I was tearing up when I read your description of her beautiful skin. Your life may be different from the 'norm' but you are stronger now and you can experience a love and devotion that other parents will never comprehend. With that comes an appreciation and awe of the strength and resilience that Ellie has (I wonder where she got that from).

Jacolyn said...

Kathryn, You are such a beautiful mom and you have such a beautiful daughter. Thanks for sharing these lovely thoughts!

Danielle said...

Another insightful post.
Tell us, what is a 'fairy party?' It looks like LOTS of fun. Excellent pictures.

Miracles said...

I always love how up front and honest you are. Not just about Ellie, but everything.

I can honestly say I never judge other parents with disabled children or think to myself "I'm glad it's not me" because in reality, it could have been me. I am actually quite honoured to know mother's who have disabled children. They are some of the best mother's I have ever met.

Anonymous said...

Very well said, a good analysis of the complexities of parenting the really, really rings true for me. And it so NOT making lemons out of lemonade.
I think health care professionals and educators are trained in problem-based thinking and learning, and unless they question it or have personal life experiences showing them otherwise, they see persons with disabilities as problems to be fixed.
Thanks for a great post.

Lisa said...

Alright. So now I'm crying!

Great post, Kathryn. Thank you.

Danielle said... I know this has nothing to do with your above post..but RYC: are you serious about that side effect of Catkins? LOL I don't KNOW! I had not made it that far in my plan..oh no...

Kathryn said...

Danielle - what is RYC? Sorry brain dead at the moment.

And in answer to your question - yes, oh so serious. Think about it - meat is the slowest thing to digest and so is fat - very slow on the motility. And then take away all the fiber. So, at least in humans. Not sure about Catkins though...but you might want to ask your vet.

A fairy part is a group of people at a community center who wanted to set up this party for little girls. So all the little girls dressed up as fairys (so cute) and then went to the community center that set up a fairy tent made of tulle full of books and HUGE fluffy stuffed animals to loung on as well is in the pic. There were also tea sets, materials to build a fairy house - those looked more life offerings to the plant spirits, face painting, huge things to use to blow bubbles with, and other stuff we couldn't do. But it was fun and Ellie really liked the tent.

Katy said...

This is a wonderful post--something I needed to hear. Right now, we're in the wait-and-see part--some things are clearly not right with my baby, but others are it's too early to tell. I am also so grateful to all the people who've commented on the callousness of that professional. For me, my child is still very small, but people seem to change their minds about him the minute they see his CT Scan--I can hear it in their voices, and the way they discuss treatment options. I think he looks pretty good, but things get grave once they see how badly his brain was damaged. Breaks my heart because I want people to be Hopeful, not pitying.

Kathryn said...

Katy- I think the main thing is for you to just continue to tune into your child. The brain is still a mystery even to scientists and doctors. There is a girl walking around England right now leading a normal life, having gone to college etc. And her CT scan shows that her brain is mostly water filled ventricles and not much more. And no one knows why she is not totally devastated. Ellie's scans look horrible too. She has brain atrophy and diffuse PVL but there she is reading and doing math and communicating with us and understanding what is said to her and being this wonderful loving funny little kid. So, you just can't know from what the scans say. Yes you can know there will be problems and that you face challenges that others with out such an injury may not. But you shouldn’t necessarily predict the worst outcome because it’s not a given by any means. I also know that a child with a normal brain and birth scenario that is not stimulated by their mother can end up with learning disorders, pathologies and lower IQ. So, I think there is a case for nurture.

None of Ellie's doctors can believe how well she is doing. They are always surprised by how wonderfully she has come on. One always says, “What are you doing with her? None of my kids are doing as well. I mean it, she is a superstar”. So you see, the scans may be horrible, but if you child is here you owe it to them to have hope and to believe in the impossible. It's your prerogative as a mother. At the same time finding them the best possible medical team is also really important so that you know what your options are - then you decide what to do based on your tuned in connection with your child and the expert advice you are getting. It's not easy.

Hang in there. I really do know how scary and hard it all is. I used to freak out when we left the NICU for brief periods when Ellie was there. Freak out scared out of my brain about what our life would be like, how she would be, would she ever be able to respond to me at all? What ifs...and then I would go back to her isolet and sit beside her and this wonderful sense of calm would fill me and I knew it was going to be ok. I didn't know what ok would necessarily look like - but I knew. And you know what, it is ok and Ellie is wonderful. Just like your little one is your wonderful too. I think it is really scary in the beginning because they are so on the edge. I am sorry all of this is happening to you and your little one. I hope he will be ok!

Angela said...

Kathryn, this post was so beautifully written. Thank you for sharing. Thank you for putting words to something that I've felt but couldn't describe.

I love the pics fairy-Ellie -- too sweet!!!

Nathali said...

I just read your latest blog entry and it seems like you are a blessed woman and a great mom (with an awesome man at your side!)

It is always difficult to see things from the outside and not understanding is just natural. Now that my baby is hearing impaired, I look at it totally different. All of a sudden I talk about Cochlear implants, hearing aids. The week before my baby was born, I told my friend that the scariest thing for me was to think that your child would be deaf or blind. Ironic right? I learned from my baby that the human being is amazing and you can adjust to everything. You have a beautiful daugher and enjoy every moment you get to spend with her!!

Laura Gilmour said...

I really enjoy your blog. You have a way of taking joy in everyday life and in the smallest moments. This is made possible by having a child with a personality like Ellie's: A little girl who's ready to take on the world with endless optimism.

To Ellie:
Keep your dreams alive. I know you may be too young to know what that means now as you are only four but I know you are not too young to have dreams.

msiagirl said...

I just read your great post and looked at your gorgeous pics. Sorry to have been so MIA. I loved that grown up pic of Ellie sitting in her chair - wow! love you guys, xx

Kathryn said...

Thanks everyone!

Kellars Mommy said...

I stumbled apon your blog while reading another preemies blog..I must say that this is one of the truest, and most eloquently worded post I have read in quite sometime...Your little girl is beautiful..

Kathryn said...

Keller's Mom - thanks so much. ;)