“If ever there is tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart.. I'll always be with you.”
~A.A. Milne, from "Winnie the Pooh"

Wednesday, March 7, 2012

Becoming the Change

As some of you know, I am working on a HUGE project for school which will be turned in at the end of the semester. It is called a multi-genre research project, which basically means that I will be doing 8 separate projects which all must blend together cohesively into one. I was having a very difficult time deciding on what to do at first so when the deadline for the theme came around, I went with what I always do as a subject...Down Syndrome. After quite a few days of panic afterwards about what I was going to cover in my project, how to tie them all together and have it reflect the focus of my degree (in healthcare) I had a flash of what I hope will be genius.
With all the discussion about the new prenatal tests that are swirling around in our community, the need for the education of the medical community on what it actually means to be the parent of a child with DS had become imperative. Education quite possibly could be the difference between life and death for a baby found to have an extra chromosome in utero. 
The doctors who give parents these diagnoses often have no real life experience with DS. Their information comes from a text book (which btw usually still use the dreaded r words to describe mental capacities of kids with DS. I know this from my own experience and I gotta say that the first time I read something to that effect after Liddy was born, I wanted to rip the page out!!) It is more often than not outdated and nearly always paints an inaccurate picture of what can be expected from our children. It is also important to note (and makes a difference, I'm sure) that the physicians who do the testing and subsequently give the results of that testing are obstetricians, who don't even have contact with babies after they are delivered. Based on the info being given to them, how can we expect any parent to make a well informed decision as to whether to continue with the pregnancy or to abort when those who are guiding them are poorly informed themselves?
All this got me thinking about my own experience. While there wasn't discussion after we received Liddy's diagnosis about aborting (I think we made our stance perfectly clear after the first AFP and it was too late in the game for those discussions anyway), during the constant streams of appointments that followed NO ONE had anything positive to say about what we should expect. NOT ONE PERSON. Months and months of continual bad news made it hard to grasp what we were facing (and also gave me a horrible case of white coat syndrome). Finding real, up to date, accurate info about what having a child with DS was like, what we could expect, and what it would mean for our future was left entirely up to us...and quite honestly, its not as simple to find that type of info as typing Down Syndrome into a Google search. It takes persistence and a level of grit to wade through the negatives in an effort to find something positive that at that point in my life I just didn't have in me (thankfully, my husband did.) 
I would have given almost anything for one person to tell us it would be okay. To reassure us that we were perfectly capable of being Liddy's parents. That our other kids would adore her. That we could fully expect her to do all the things we dreamed for her before we ever heard the words Down Syndrome. 
I've wanted to be a nurse for a long time. Not just any type of nurse...an OB nurse. That dream was born long before having another child was ever a consideration, back when I could have never imagined that I would find myself where I am now, the 34 year old mom of a child with "special needs". I truly believe that God planted that desire in my heart knowing already that someday I would be Liddy's mama. I just as strongly believe that He will place in my path someday a family who unexpectedly brought one of our special angels into this world, that I will be the one caring for that mama when she thinks her world is crashing down around her. And I will be that one voice that I so desperately longed for....the one that says, "I've been where you are. I made it through and emerged a better person because my child was placed in my arms. This is going to be okay. It's going to be better than okay. Its going to be the most amazing experience of your life."
I always say that someday when I have more time, I am going to take Liddy, go back to every single doctor I ever encountered after that September day when our world seemingly crashed around us, and offer my time, my energy, my new found knowledge to educate them and their staff on what they should be saying. Leave my phone number so that I can be called in if necessary, if wanted, to speak to parents in the same position we found ourselves in a little over a year ago. But the truth is this....if I continue to put it off until life isn't so busy, it will never get done. That's something that I can't accept because it's so important. So very, very important. Its time to put up or shut up. Become the change or stop complaining about what needs to be changed.
Which leads me back to my project. If I HAVE to do this project (and I do), why not create something that can be used in an effort to make a change? Why not use the knowledge I have, the friendships in the DS community that I have built, the resources at my disposal to put together something that is worthy of more than a grade, something that won't end up in my trash can at the end of the semester, something worth the time, effort, blood, sweat and tears that I will put into it to make it worth an A in a professor's eyes? Don't I owe that to myself? Don't I owe it to Liddy? 
This project, which many of you are helping me with by submitting your responses to my questionnaires and your pictures of you and your beautiful children, will not be filed away in the archives somewhere. I fully intend to make multiple copies and pass them out in the medical community, starting with those doctors I spoke of earlier. This project is the first step in my becoming that change that I believe in so desperately........
To all of you who have jumped on board already and submitted your responses, please accept a heart felt thank you from me to you. I have read every single word of every email and they have further inspired me to make a difference. There simply aren't words for how touched I am to hear all of your stories........
Anyone who hasn't participated and would like to, please leave me a comment or email me @ heidi_melton@yahoo.com.

“Be the change that you wish to see in the world.” ~Ghandi

3 comments:

  1. I'd be thrilled to participate if you still need people. I have a three month old baby girl and a nurse after my delivery helped keep my husband from knocking our inconsiderate and demeaning pediatrician's block off. Not a positive way to start. But our nurse was awesome and I'm sure you will be an excellent nurse and a shining example.

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    1. Please send me your email address! :)

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  2. If you still need participants, I would be glad to help: laurahlj@roadrunner.com

    I had a very positive experience. My OB often told me about her co-worker who had a teenage son with Ds and about the manager of daughter's basketball team who had Ds. When I brought Ben to a recent appointment she scooped him us and snuggled him. I feel blessed to have been in her care!

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