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 It is more often than not outdated and nearly always paints an inaccurate picture of what can be expected from our children.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

A Meeting of Friends

Annie and I have been online and blogging buddies for quite a while now. Ollie Faith is very close to Liddy in age, and had her OHS before Liddy had hers. Watching her sail through her surgery and recovery had a lot to do with calming this mama's fears (as much as was possible). Annie's love and support held me up through Liddy's surgery, and when Liddy had to have surgery again to place her pacemaker, I got a message from Annie that if I needed her to come she would pack up the kids and be there in 3 hours. I knew then that I would have a friend for life.
We have batted the idea of meeting somewhere in between her house and mine for a while now but we could never figure out where to meet or what to do. When winter rolled around this year, and the girls both were getting ready to celebrate their 1st birthdays, I got a hankering to go hug these ladies in person...... So what else could I do but pretty much invite myself to Annie's house?? :)
Thankfully, Annie is just about THE sweetest woman alive so when I suggested a visit, she jumped right on board and even offered us beds for the night so we didn't have to make the 4 hour drive for a short visit and then drive home.
I've been counting down the days for several weeks now. I absolutely could not wait to officially meet Annie and hug on sweet little Ollie.......

 Liddy and I got up extra early yesterday morning, threw our stuff in the car, and took a road trip to Illinois.
The Reid brood was everything I expected and more. :)
Getting the chance to have two extra chromosomed cuties in one place was absolutely priceless......

Liddy was on her A game...oozing extra cuteness all over the place (which I frankly worried about since she's not much of a proponent of change). Little Miss O sadly did not feel well, but the two still had a great time playing together (and fighting over toys haha).

Annie and I had a great time too. Between playing with these two precious babies,chit chatting with each other, and meeting the rest of Annie's awesome family (Aubrie, Everett, Jade, Maggie, Caroline, Penelope, Kyle, Janie and Stu!), all in all I think yesterday was a truly amazing day.
I was a little sad to leave....although I missed my hubby (and my bed!).

Annie, thank you so much for your hospitality.
 I already loved you before. Now I am hopelessly head over heels in love with ALL of you. :)
I can't wait to return the favor one of these days (even though I have no idea where I'd put all of you in my tiny house!!!)
xoxoxoxoxo

Hoping to Be Off Blogging Hiatus Soon........

Okay. I admit it.
I have been sorely neglecting my blog.
That just makes me sad....but other things have needed my attention and often by the end of the day, when I finally sit down at the computer, I find that I don't have the energy left to think a whole lot. :)
Things have been going great with Miss Liddy. She has finally started the process of moving out of the 3-6 month clothes into the 6-9 month ones. That in itself is HUGE! We've been rocking those 3-6'ers for almost 7 months now! Unfortunately for smarty pants mama, her feet grew a little too. I spent more on baby shoes at Christmas than I normally would have and bought her two nice (and super cute!) pairs thinking that the expense was justified since she'd probably be wearing them for darn near a year. YAY for slow growing feet! Ummm. Guess she got me.

She's gotten to be an expert at sitting up, although she tries to act like she doesn't know how to go from laying to sitting by herself. I think her cuteness helps her get away with the princess treatment because, really, how can one resist this face.........

 

????????

She has figured out how to do the army crawl in the last few days, but with her usual Princess Sassy Pants attitude....backwards. :) We hear more sounds from her now, and the baby words are starting to have meaning. She knows who Dada is although that remains her favorite to say, and she can say it in what seems like a thousand different ways. Mama is still a rarity but she says it when she means it. I have definitely heard several versions of no (even once as the ornery little cutie attempted to grab something I had just told her no about. She laughed and told me no no no the entire time she was grabbing for it again.) 

She gives the very best spontaneous kisses. She grabs your face and then slobbers all over you out of the blue. My new favorite thing. :)

She is getting super capable of picking up food and eating it herself.....which is something that excites her because the food can actually go in at her pace, instead of waiting on Mom's (much slower) pace.

She's positively overflowing with smiles and laughter. And usually keeps me in stitches with her silly dancing and her crazy faces......

She's growing up so fast all of a sudden.......

Even rolling her eyes at me apparently... lol

Spring break for me this week.....so hopefully that will give me a little more time (and God willing, a lot more energy!) If all goes well, Liddy and I will be heading out on our own for a road trip and sleepover with our dear friends over in Illinois. :) Can't wait to blog about what will surely be an amazing first play date between Liddy and Ollie!