Friday, March 10, 2017

How Do You Solve a Problem Like...?




What problem, indeed?

I've been asking myself this question lately a lot. And, specifically, I was mulling this very query the other night at the call center where I work as a Cash Acceleration Representative (a fancy way to say I call people who haven't paid on their medical bills to offer them payment plan or financial aid options.) As awful a job as it may sound, I really do love it. I don't like the evening hours work schedule, keeping me away from Hubby and Sweetie. But I do enjoy helping people and making them see there is another way to get past these particular financial issues - ways that will benefit both them and the hospital. That moment when an angry person actually stops to hear what I'm saying and is both surprised and pleased to learn about the payment plan or financial aid option, and they actually end up genuinely thanking me for giving them a call! Makes my day every time. There's no better feeling than knowing you've helped someone who feels like they are hopelessly drowning, realize that you have a life jacket just their size they can put on. Love it!

But anyway... yes... I was thinking about this video (above) Hubby and I recently saw, and this very question of "What problem do you want to solve?", and generally just feeling a bit fitful about life, when all of a sudden it hit me. Like a ton of bricks, as the saying goes.

I want to advocate for adults with Spina Bifida. More specifically, for adult women (and men) with Spina Bifida who want to have children.

Still to this day - what? nearly 12 years from when I started this blog - if you search for "parents with Spina Bifida" on the internet, you nearly only get resources about being a parent who is raising a child with Spina Bifida. Granted, if you search simply for "adults with Spina Bifida" you do, in fact, find a plethora of websites and articles to explore that at least, in part, discuss what it's like to be an adult with this birth defect. However, in taking a quick look at some of those resources, very few discuss pregnancy and/or parenthood as a viable option for such an adult to consider. In fact, the Spina Bifida Association website itself, on the page dedicated to Adults, has several sub pages to click on for the curious adult with SB and one of these categories is Family Planning. Now, you'd think that that page would be all about the steps an adult with SB needs to consider and play out if they and their partner are seriously considering starting a family. Hah! You would be entirely wrong, my friend! No, the Family Planning section on the website of this national organization dedicated to supporting and educating people and families of people with Spina Bifida is directed towards the healthy adult woman as she finds herself pregnant with a child with Spina Bifida, what she needs to know about the birth defect, and how to proceed with the pregnancy, as well as how to care for the child after birth.

I mean, I just can't even!

(Full disclosure: another sub page that you can choose to explore is titled Prenatal Care and Issues and that page is for the woman with Spina Bifida caring for both herself and her unborn child as she works her way through pregnancy, delivery and caring for the newborn at home. So, yay. They got some useful info out there. Good for them.)

So! I want to change this! This is the problem I want to work on and solve! There is entirely too little information out there for individuals with Spina Bifida who want to make a real life for themselves. Just sit down, do your exercises, go to the doctor, and get through your simple, inconvenient, different life the best you can. That's pretty much what I feel the message to adults with Spina Bifida (and other disabilities) currently is, and it's awful. Everyone is entitled to the best life they can lead! If someone with Spina Bifida wants to have a family - they should be able to do it! And, yes, for some it honestly may not be the wisest choice or even medically possible to endure a pregnancy. But there are other options! Other, "healthy" people who can't have children still can find a way to bring children into their lives, either through adoption, surrogacy, etc. So too should be the case for a disabled person if this is what they really want and they prove themselves able and qualified (just like a "healthy" person has to go through certain hoops when adopting, etc.)

So. I came home from work that night and told Hubby that I had pinned down the problem I want to solve. When I told him, he was curiously interested, reminding me, "That's what you've always said. That's the reason you started your blog." ~ "Well, it's still true!" Advocacy is still just as desperately needed as ever, and I want to find out - beyond "just" my blog - what concrete positions are out there, what career fields, what volunteer opportunities, what skills are needed and how do I acquire or improve them, to aid me on my solution to this problem. Where do I start?

As for my current skills and interests, I think they all work very nicely indeed with establishing a good start on this path towards patient advocacy. I write well and love to do it. For as quiet and introverted as I am, professionally speaking I am a great "people person." I love the whole world of education and have loved tutoring kids one-on-one over the years, as well as subbing at Sweetie's new school. I really love those particular kids, their drive and determination, their individuality, and their energy and creativity. I'm extremely interested in helping others discover their best selves. In short, I love helping people and I have at least the beginning skills to assist people with seeing their true potential and working with them on concrete goals to get where they want to be.

And as for my blog - this blog... I stated last night to both Hubby and Sweetie that I started this blog as a means for adults with Spina Bifida to know that it is possible to have children if they want, and to take a look at my particular struggles and triumphs with parenting as a disabled person. Yet in actuality, it's really turned into "just another mom blog." To which Hubby looked at me for a moment, until I followed up with, "...and that's the point, isn't it." I'm "just" a mom. I'm no special thing. I'm no amazing woman who heroically did something I wasn't supposed to do. I'm certainly no miracle worker. But Hubby and I did see through a goal for which we didn't have much information, nor with real life super knowledgable support systems in place. Sure, our doctors were excited and helpful and willing to learn along with us, and certainly knowledgable enough to make us feel secure. But they, by and large, honestly did not have the real world history of experience in dealing with "people like me" as we began our journey into and through pregnancy and childbirth. No information out there - we just knew we wanted a family and we went for it, with the support of awesome medical professionals who cared for us well and learned a thing or two along the way by working with and for us.

Adults with Spina Bifida can have children, if that's what they want. One way or another, they should see their dreams realized - whatever they may be! There are so many individuals with disabilities out there who want to be "just a mom" or "just a dad."  If I have anything to say about it, I will help them know it's possible and guide them toward the necessary resources to make sure their experience is as healthy, responsible, and smooth as possible.

Problem, consider yourself challenged.


Tuesday, January 03, 2017

I Could Go On...

Well, Sweetie - this one has taken me awhile. Your big day was 2 weeks ago today and I haven't yet written you a birthday post. But I think I can do it now. I'll give it a go, anyway.

It's easy enough to start off by wishing you a happy 14th birthday. Just like every year, I'm amazed to see the time rush by. No longer a new teen, you are now clearly in it, as much as you yourself may wish to deny it.

I can't remember where we were or who we were talking to recently - maybe your great grandfather? - when we brought up your recent birthday and your newly-achieved 14 years. "A real teenager" I think I said, to which you quietly but defiantly answered, "No I'm not." Now, I know you know how old you are and that, logically and sequentially, that does, in fact put you in your teen years. But I think what you may have been getting at with your almost throwaway comment was that you do not see yourself, or want to be seen as, a stereotypical teen. A category of person who, not altogether rightly, tends to get a bum rap as all things apathetic, uncaring, crude, and... I could go on. Because you are none of these things and, more importantly, you don't see yourself as possessing any of these typically unsavory teenage characteristics. You are, and you pride yourself on being, caring and kind, intelligent, unique, inquisitive, confident, loving, humble and... I could go on.

But you also know better than to let people categorize you or anyone into any particular stereotype just because of your... anything! So snap out of it, Sweetie! You are you and you are - as always - great, no matter your age or anything else. You know better and you know how awesome it is to be you. Go out there and show those who may unfortunately try to categorize you that you don't fit where they are trying to put you. You make your own category and enjoy being with others who support who you are, while you love and support them. Daddy and I know you and we love who you are and we are proud of your choices, beliefs, ideals, and... I could go on. Make your own way, bring along friends who are also challenging (for the better) other's ideas of what teens are typically like, and have a blast on the journey. Your nerdy, amazing, unique, thoughtful, loving self makes us proud to watch you lead and grow.

And, my, how you've grown this year, Sweetie, in so many different ways. Over this Christmas break I happened to see a video I took just one year ago at Christmas time of you and I enjoying a "coffee and coloring" (and hot chocolate) date at our favorite coffee shop hangout. Oh my goodness, how different you looked! A small girl compared to the beautiful young woman you have become. You are now undeniably taller than me (and you are begrudgingly getting used to that fact.) Your sense of style has become your own funky thing, complete with an indigo streak of hair at the longest section of your asymmetrical haircut, and your vocabulary and general manner of communication has vastly improved in the shortest amount of time. Seriously - Daddy and I noticed an incredible improvement in your communication style literally just 2 days after you started at your new school (a school which you absolutely love, by the way - a school you feel so challenged by, comfortable at, and have just settled into both socially and academically so beautifully and with such amazing grace and gusto). Anyway. Yes. You are no longer that little girl who sat across from me at the coffee shop one year ago. But we do still have our coffee and coloring dates from time to time, which I love and I know you do as well. I love how much we love hanging out, enjoying each other's company, having quiet fun together. May it continue always.

I could go on and on about all the different ways you really are a great person. But I'm satisfied enough to know that you know how very much Daddy and I love you, support you, and are proud of you in so many different ways. Yes, this post has been difficult for me to write because - I don't know - maybe I feel like, because you do already know where you stand with us, that there's just not much more to say. Nothing much more, at least, than what I've already written to you in any of my other birthday posts to you throughout the years. Even with all your personal changes and growth and everything unique about this particular year... the nuts and bolts of it all remain absolutely the same. You are you. You are great. You are loved.

I will say, though, that for any of the things about you I wish would be just a little different, a little more "with it", a little more grown up or whatever the case may be... well, I could add all that in to this post, as I tended to have done in years past as well as countless other blog posts since I began writing here. But, you know what? It's no one else's business. No one else needs to know the particulars about what I worry about for you, what I wish you'd do better, what I want you to learn about and apply better to your life. You know. Daddy and I have talks with you all the time on all sorts of self-bettering topics. That's our business and not anything that needs to be addressed in a public forum such as this. Suffice it to say that - as much as I go on and on about how great you are and how much pride you bring us everyday - there are things for you to work on. Heck, there are things for Daddy and I to work on! Everyone on the face of this earth has areas to work on, and if someone says they don't - they are lying. No one is perfect. Everyone has lots of room for growth and improvement. Especially teenagers (yes, in this case I'm categorizing all together.) Don't fight the lessons, Sweetie. Know they come from a place of love. Know that - as always - it's behaviors, attitudes and habits we are most concerned about improving, changing, or taking a closer look at. You can do better. We all can do better. We don't expect perfection from you or anyone. We just expect a general sense of improvement and positive growth - and we see that in you all the time.

We know you are capable of all great things, getting better and better each day. Just keep moving forward, proving this to yourself and you'll make us, and yourself, happy for a lifetime. Happy Birthday, Sweetie - we love you. May the year ahead bring you great joy, happiness, love, accomplishment, pride - I could go on.