It’s Okay to Quit

No, I’m not quitting midwifery. This post is actually about choosing midwifery. Actively choosing it. But it’s about quitting a lot of other things that came before it.

Permission to Redirect Yourself

In our American culture, quitting is seen as failure. I’m here to tell you it isn’t. Quitting is not failing. Quitting is recognizing that whatever it is you’re doing is not right for you. It’s course correction. Redirection.

If you need to quit something, no matter how deep you are into it, realize that changing course is not failing. And even failing isn’t so bad. Failing just means you weren’t meant for it.

I’ve been reading some books about personality types, and one that has been particularly useful is the collection of information available in the books discussing Strengths. The StrengthsFinder is a tool to help individuals and companies discover their strengths so they can use them in their favor. And one of the lessons learned from their materials is that it’s ok to recognize your weakness, and yes–to quit. It’s okay to give up on something when you realize you aren’t meant to do that thing. Focus on your strengths instead of punishing yourself for your weaknesses. If it means changing who you are and fighting against your strengths, it’s not going to work for you in the end.

Skills and knowledge can be learned, and sometimes it’s a struggle to learn them. But figuring out your strengths and knowing how you learn can make that easier. I’ve had to make that adjustment in my midwifery training. When I saw that one way of learning wasn’t working for me and was causing frustration and burnout in my education, I changed the environment, changed the teacher, and now I’m learning a lot and it’s actually sinking in. There’s nothing “wrong” with the former teacher, and nothing “wrong” with the old way I was learning. It just wasn’t a good fit for me and how I learn. It’s right for others; it’s not right for me. Simple as that.

Looking to the Past

When I first graduated high school, I spent a semester overseas at bible college. I thought I might be a missionary. Once there, despite enjoying the environment and experience, it just didn’t seem like what I was supposed to pursue. Missions will always be a big part of my life, but at that time, I felt I needed to return home, grateful for the experience I had and the relationships I’d developed.

When I returned to “real life”, I decided to pursue the one career that had interested me most towards the end of high school: Physical Therapy. I loved to dance, though I knew I would never be a professional dancer. But I wanted to work in physical therapy with dancers. Having the knowledge of how dancers move and use their bodies, I thought it would come naturally. I worked for a short time as a restaurant server and an in-home caregiver while I started my general education units at the local community college until I found a job as a Physical Therapy Aide. I loved working with clients and learning about the body, but it just didn’t feel right. So I quit.

While in college, I took American Sign Language as my language credit. I fell in love with the Deaf Community and the language, and so I changed courses and decided to pursue ASL Interpretation as a career. I wanted to focus on 1) special needs classrooms and 2) medical interpretation. Two things I enjoyed and was gifted in: education and medicine. But financial aid was dropped when I made $300 too much (but still couldn’t afford classes out of pocket) and I had to stop college before I could finish.

I switched directions again and found a job at my childhood church’s school, and thought for a time that I would become a teacher. The work came naturally to me, and it was nice to have a predictable schedule, even if the hours were long. But something still wasn’t quite right for me. I took some classes online (through an affiliated university that focused on Christian education), which were informative, but ultimately I changed courses yet again. This time to become a parent.

I got pregnant and was determined to be a stay at home mom. I put off all serious pursuits of a career, being too discouraged at my previous “failures” and not knowing what to do with my life. Between children, I worked part-time teaching Infant Sign Language, and developed an interest in birth.

Around the middle of my second pregnancy, my midwife (and very dear friend) said to me, “Grace, you should be a midwife!” But I shrugged it off, not considering myself “good enough” for such a beautiful, intense, highly skilled profession. But over the years, it tugged at me. I became a certified doula, a postpartum doula, and a breastfeeding counselor. I hoarded information on the subject and soon things clicked for me. It made sense and it was something I was familiar and comfortable with. The idea of being a midwife didn’t seem so intimidating or impossible.

It All Comes Together In the End

Those attempted professions may seem disjointed and completely different. But now looking in hindsight, I can see how they have each contributed to my current pursuit of midwifery.

1. Missions. While I know I have not been called to be a full-time missionary, I have seen how my experiences in missions work will contribute to my plans for the future. In the midst of my midwifery training, I’ve developed an idea of how to blend these passions. There are field hospitals in developing nations which serve primarily refugees. When I become licensed, I would like to go semi-regularly (every few years) to give the local and long-term midwives some respite. My goal is not to westernize anyone or do any “mission tourism”. I just know how intense that work is and want to give the workers who are committed there a little rest. But my understanding of missions, regions in need, and international travel will contribute to my preparation for that work.
2. Physical Therapy. Understanding how the body moves, muscle groups, different kinds of movement and positioning… These are all so important for pregnancy health and for birth. Not only that, but working in the physical therapy office was my first exposure to things like charting, diagnostic codes, and insurance billing.
3. ASL Interpretation. While it will be rare for me to have a Deaf client, the fact that I can communicate with them in their own language is helpful. But in the more generalized sense, the willingness and understanding of entering another culture, adapting to their ways, and finding ways to communicate–that is helpful as well. Being in the Deaf Community was a wonderful experience and I’ll always have a place in my heart for them. Also, because my focus in ASL Interpretation was medical interpretation, I had taken medical terminology courses, which have been very helpful in my midwifery education.
4. Teaching. Education is a big part of midwifery. We educate clients on pregnancy and birth, nutrition, general health, and physiology. And when we have enough experience, we also educate new midwives as we take on apprentices. Being comfortable with teaching, understanding different learning styles and methods, and adapting to the learner’s needs, are all aspects of education that will be useful in midwifery.

Being okay with quitting means appreciating the time you had in that field for what it was. We are always learning, even (sometimes especially) from “bad fits”. I learned a lot in my previous apprenticeships, even if they weren’t the right fit for me. I learned not only about midwifery but about myself. I found my limits, I learned about how I respond to stress (so that I can identify it quicker and put up boundaries as needed), and I learned that it’s okay to quit.

If you’re not in the right place, change it. Find your strengths and use those instead of fighting yourself over your weaknesses. Of course be responsible and don’t sabotage yourself. But if you’re really not in the right role, or the right field, then figure out what is right, and make the change. It might take a few tries to figure out what exactly is right for you, but each time you quit and try something new, you get a little closer to knowing.

If I hadn’t quit those other professions, I wouldn’t be in the one I am now, which truly is right for me. Quitting isn’t about giving up or failing. It’s about choosing something that fits you better. So I quit a few times–but that freed me to choose midwifery. And that’s the right choice for me.

~~~

How about you? Have you quit something? Or do you feel you need to? Share below your experiences with quitting!

So You’ve Been Forced to Homeschool…

The world is a bit crazy right now, what with a new virus, the stock market crashing, millions of people out of work, and everyone trying to stay sane while schools were unexpectedly and immediately shut down across the nation. Many parents who swore they “could never” homeschool are now being forced (because they have no other options) to homeschool. Some school districts are finding creative ways to continue instruction from teachers, but many districts are struggling to figure out how to do that when large numbers of their students have no access to the internet.

This has led to many parents feeling utterly bewildered as they try to figure out how to educate their children at home. And this is where the homeschooling parents step in. 

Yes, I am a homeschooling mom to two kiddos with learning disabilities. I’ve been doing it for seven years (including preschool). While I am not the most experienced homeschooling mom, nor the only one with a blog, I would like to share my perspective on what this forced homeschooling situation can look like and how you can make this doable for you–yes, even while you work from home. And no, it doesn’t involve meticulous scheduling. Although my perfectionist nature really enjoys making schedules and lists, that is actually NOT going to be helpful in this situation. And I’ll explain why below.

So without further ado (too late?), here are my tips, suggestions, and reminders for this new challenge you are facing.

1. Realize that this is not typical homeschooling. We homeschoolers are struggling, too. We usually have the use of the library, co-ops or charter schools, extracurricular classes, field trips, and personal connections with our community. This is going to be difficult for us, too, though we at least already have our curriculum and have an idea of how to make home education work. Also realize that converting in-school learning to at-home learning is not something that you do overnight, and it won’t be entirely smooth. You don’t know what your child’s class was going to learn next, or what curriculum they are following, or what methods are being used. You have to look at this not as completing the school year at home, but rather preserving skills and introducing a few new concepts to keep them on track with their learning. So have grace with yourself. This is hard, and this is new for everyone.
2. Above anything else, don’t put undue pressure on yourself or your kids. As I said above, this is new and difficult for everyone. The emotions you are experiencing are the same ones your children are experiencing, but they’ve had less experience in managing emotions and they naturally have less maturity. If you run into a day where there’s a lot of friction and kids are extra resistant, take a break. Might be ten minutes to grab a snack, might be an hour to play outside (even if “outside” just means your apartment balcony or patio), might be the rest of the day. Regular homeschoolers do this a lot, and for many of us (especially those of us with special needs kiddos), it’s one of the reasons we homeschool in the first place. We love the flexibility it provides and the absence of pressure and stress. Sure, some days I lay down the law and say, “No, we’re behind and we need to stay on track. Let’s take a break and get back to it so we can get through this.” But some days I just sigh, shrug, and say, “Ok, we’re done for the day.” Because learning doesn’t happen when they are distracted with their bigger-than-usual emotions.
3. Don’t worry about a schedule. We homeschooling parents tend to create elaborate schedules where every subject is covered and our children are deeply enriched in everything and we finish the curriculum weeks before school ends. And then life happens. If you must make a schedule for your own sense of security, be ok with that changing, or simply not happening. Have a rough idea of what you want to do, maybe make a list of some daily goals to keep you motivated. But don’t get too tied to the schedule. Be flexible and fluid. I could make a suggestion of how to order your day, but the truth is that what works for my family won’t necessarily work for your family. I’ll tell you that for our typical homeschool day, we do try to knock out the core subjects in the morning so that they are more likely to get done, the kids are more alert, and the fun subjects (like art and music) are incentives to look forward to. But do what works for you. And don’t beat yourself up when (not if) that schedule goes out the window completely some days.
4. Take advantage of the deals going on right now. Many online supplemental programs are offering discounts or even free access while schools are closed. There are other free resources for the arts, literature, and more (Broadway shows and many museums are the ones I’ve seen ads for recently). I’m assuming since you’re reading this that you do have access to the internet. So get searching! Explore! Find a classic kids’ book on Audible that the kids can listen to while you get some work done in the next room. Set them up with a YouTube Kids account so they can browse safely. You can even set it up so that they can only view educational videos. A couple of our favorite YouTube channels are Go Noodle and Snake Discovery. We also love Curiosity Stream, a documentary streaming website. We’ve had the subscription for a while, but right now there’s a big discount going on. Your regular streaming services also have documentaries and educational programs. Search for what your kids are interested in. My kids have learned a TON about animals from watching Wild Kratts on Prime. This brings me to the next point…
5. Follow your kids’ interest. There’s a method in home education called “Interest-Led Learning“. It basically means, find what your child is interested in, and use that to teach them all the subjects. So let’s say your kids (like mine) love learning about animals. Animal facts are great, but you can use animals as the “setting” for other subjects. Read and write stories about them for language arts (Aesop’s Fables are a great place to start for the K-2 age range), use them in math problems, discuss their traits, physiology, habitats and more for science, and discover what roles they may have played in historical scenarios (or just imagine, using the perspective of, say, George Washington’s horse, to tell the story). This is by far the smoothest, easiest way to get kids excited and engaged in school, especially when switching from in-school learning to at-home learning.
6. Just read books. We’re Charlotte Mason homeschoolers (for the most part), which means we rely on books. A lot. For everything. Not just any books, but “living” books. I’m not suggesting all the forced-homeschoolers should adopt Charlotte Mason methods, as those take a long time to wrap your head around and get into the habit of doing (fellow CMers will appreciate the pun I inserted there). Anyways, it would simply take too much time and effort to get into that particular groove, so what I would take away from that method is simply that a lot can be learned simply by reading stories. Living books are books that tell a story (rather than textbooks) and which engage the reader and provide useful or inspiring content. “Twaddle” is not allowed in Charlotte Mason. Twaddle consists of books which have weak story lines that don’t fully engage the reader, books with too much “fluff”, books that don’t have a solid plot or purpose to them, and so on. You can do some Googling on the subject to find out more. But we’re not looking for perfection here, just inspiration. Think of the classics that you may have enjoyed growing up. Little House, Boxcar Children, American Girls, and so on. You can find lots of suggestions, listed by age/grade, on Ambleside Online.
7. Include fun and games! Board games, puzzles, crafting, art, card games. These promote critical thinking skills, spatial awareness, and cooperation. Give your kids projects to work on, or task them with finding everything they can find out about a certain subject. Get out old magazines and have them go on a scavenger hunt through them. Put on some music and let them dance around in an overly dramatic way; or have them listen to instrumental music and have them make up stories to go along with the music. Or have them play Disney movie trivia games (we love to search YouTube for these kinds of games).
8. Lastly, just do your best. Whatever that means for you and your family, whether you are working or not, whether they get anything productive done… Just do your best. We’ve never had to do this before, and we’re all still learning. Have grace and just do what you can. 

 

If all else fails, just flip on Disney+ and let them watch Frozen 2 for the 7,562,893rd time.

Surrender Wins the War

My biggest mistakes were the direct results of anxiety. My worst choices came as a response to fear and worry. Because of anxiety, I have…

–Said things in rushed nervousness that caused others to think I did something wrong that I hadn’t.

–Said things to people I respect in such a convoluted way that it made them think I was disrespecting them.

–Given up on pursuits when it became overwhelming and I doubted myself.

–Side-stepped (and broke) certain rules out of desperation.

–Got a speeding ticket (because I was late and panicking).

–Succumbed to peer pressure and did things that were bad ideas.

–Argued with loved ones (especially my husband) while overcome by the idea that I wasn’t being understood.

–Yelled at my kids.

–Broke down in tears over miniscule upsets.

–Spent days and nights, for months, reliving and obsessing over disagreements and misunderstandings.

–Caused said misunderstandings.

–Gone to the ER three times for debilitating migraines with extreme vertigo.

Anxiety isn’t just a passing feeling, or a little worry. It can be all-encompassing. It changes how you perceive certain situations, seeing criticism and shame from others even when there is none. It changes the way you speak, your nervousness causing you to use the wrong words or speak in such a circuitous way that the hearer is confused and hears the wrong thing. It makes you seek the acceptance of others so much you wind up saying and doing things that, on your own, you never would have ever thought of doing. It leads you to believe you are a constant failure and you’ll never succeed. It makes you think everyone hates you. It causes you to stay up late at night, replaying scenarios or planning speeches or trying to find a way to fix some mess you’ve made. It affects your health, leading to increased blood pressure, weight gain, nausea, chronic fatigue, joint pain, and panic attacks. It can make you freeze, feeling powerless and/or without any motivation. It feels like shutting down and ramping up all at the same time.

When I try to figure out where this came from–where its origin lies, I can’t pinpoint an exact moment or situation that led to this constant state of fear. Perhaps I was always like this. Or maybe it was a slow process over many years of letdowns and mistakes. Maybe it wasn’t so bad until my postpartum depression (which I had after all three of my pregnancies) pushed it over the edge. I really don’t know. I just know it’s here, and it’s hard to get rid of. It’s like I told my doctor, “I feel like my body just got stuck in this state of stress. I feel the physical effects of it even when there’s nothing wrong, nothing around that should be causing me stress–it’s just there.” And while it still makes me do and say stupid things, I think understanding it has helped me to get a better handle on it. As one 80’s cartoon once said, “Knowing is half the battle”.

I can’t force it to go away in a moment. I had a bad morning the other day and my husband told me to stop stressing. All you ladies can pause here to laugh, because we all know how well that works. I was proud of myself for not screaming at him in that moment, but I simply told him, “I can’t force it away. I know I just need time to come down from it. I’m in the process.” I can’t make it stop immediately, but I can slow it down and learn how to cope with it better than I had before. Over time, I can whittle it away and make it less a part of my life. Reduce its impact and shorten its duration.

I don’t have a magic cure or a guaranteed system to beat it once and for all. And as much as I do believe in the power of prayer, something I have learned over the years is that God doesn’t always take away our “thorns”. God doesn’t always heal immediately and/or completely. Sometimes the best way to heal is slowly, as we learn new lessons and stay the course. Often the slow recovery is the most effective one. As God is the original Physician, I trust that if I’m healing slowly, it’s because that is what’s best for me. Maybe for the healing to “stick”, it needs to be a long-term process rather than a quick fix.

So what am I doing? Well, I don’t want to turn this into a “You should…” or “Here’s how…” type of post. That’s not what this is for. The answer won’t be the same for everyone, and I want the focus to be on recognizing anxiety’s impact rather than “fixing” it for everyone. I’ll say just a few words about what’s working for me, to round out this piece and show that it does take consistently hard work, but please don’t take this as a statement of what you should be doing. That’s up to you.

1. I am seeing a licensed therapist. She gives me tools and ideas of how to approach certain situations, how to become more aware of my emotions before they get out of control, and how to improve my communication skills with those around me. The awareness that therapy brings allows me to discuss my anxiety with others and to be a better listener to curtail confusion and miscommunication. Please don’t give in to the stigma that you have to be a danger to yourself or others before you see a therapist. They are awesome and they work with “everyday” problems.
2. I am taking supplements, with the guidance of my doctor and my own herbal studies. They are based on my specific symptoms, both physical and mental. You can talk with your doctor, or an herbalist, to find what’s right for you.
3. I am taking time for myself. This might mean going to a coffee shop to read. It might mean hiding in my room and sneaking some chocolate away from children. It might mean going to a girls’ night out with a group of friends. And yeah, it sounds cliché. But mom (and midwife) burnout is REAL. I’ve been there. It’s awful. And “me time” won’t solve everything. It won’t. But it helps take the edge off and gives you moments of peace so you can gather your thoughts, escape in a good book, work on your own hobbies and interests, or just have an hour or two of no small children climbing on you.
4. I’m making the time to focus on my spiritual health. Again, this could mean something different for everyone. For me, it’s reading, journaling, studying, and reflecting. This is the piece that brings all the other pieces together. It’s like the capstone on a pyramid. You build up all these other things to support your healing, and then you cover and complete it all by ensuring that what is most important–the state of your soul–is cared for and able to grow.

These may not be what you need. That’s fine. They’re just what I’m doing, and what seems to be helping me. But once you do recognize anxiety, and realize how much it affects your life (and makes you do stupid things), you can start, little by little, to make changes. You can start to heal. 

In the end, it’s about surrender. Accepting what is, and then finding ways to move forward. It’s the only way to heal, to recover. But first you have to surrender. You have to acknowledge the things you did. Because, although they were caused by anxiety, that is not an excuse. You still made the choice. I have to live with the fact that I did and said the things that distanced me from others, put me at odds with authority, and made a mess of things. I have to live with that, and when you already have anxiety, that’s not easy. Because I still sometimes think, late into the night, about all the things I’ve done wrong. I pile up guilt and shame myself. But the freedom comes in forgiving yourself. The war is won not by continuing to fight anxiety, or fight the precarious positions you’ve put yourself in, but by giving up. The war is won by letting go. 

You have to surrender to win the war.

If you have anxiety, what has helped for you? How do you cope with it? What has been your experience?

I’m Normal

That’s what they tell me. I’m normal. All my labs are within normal limits.

So why don’t I feel normal? I feel terrible, actually. I have for a while. I won’t go into details, lest your eyes roll into the back of your head and you assume I’m just looking for a pity party. That’s not what this is about. Suffice it to say, my symptoms are fairly indicative of some kind of thyroid… something… But my labs refuse to show it as such. My labs are normal.

Normal. Let’s talk about that word. “Normal” could also be interpreted as “common”. That is, after all, how lab ranges are developed. They take “healthy” people and use their labs to develop a range of what is considered “normal”. But does that mean that “normal” is ideal, or even functional, for everyone? Maybe some people need more TSH to feel good. Maybe some need more progesterone, or estradiol, or Free T3. Or maybe those “healthy” people they are using to interpret the range of normal aren’t as healthy as they think.

So I’m not as low as others, but I feel much worse than I used to. I’m not myself. But I can’t get help because my labs are normal.

I can try to deal with it on my own. Try to do the research myself. Figure out a regimen of supplements and herbs to try and support my thyroid, make it function a little better. But with so many “normal” labs, I can’t help but doubt myself. Sure, my symptoms scream thyroid, but maybe it’s something else. Something less common. Something less… normal. And if that’s the case, should I be wasting time and money focusing on my thyroid if that isn’t what’s wrong with me?

Or maybe I’m just a hypochondriac that is exaggerating and just wanting to find an excuse for my low energy, my lack of drive, dare I say even my laziness. Maybe, like one doctor told me, I just need portion control and I need to work out more. Because already having a low appetite (one of my symptoms!) and naturally not being interested in large amounts of food wasn’t enough. Apparently, despite having a caloric intake lower than the majority of Americans, I still need to restrict my food even more. And somehow work out for a full hour every day. I didn’t bother asking her when I was supposed to fit that in between being a student midwife, parenting a child with a severe disability, homeschooling two kids with learning disabilities, serving in ministry, and actually paying attention to my family and doing enjoyable activities with friends to keep me sane. Not sure how that was supposed to be done, but that was her answer when I told her five different symptoms (only one of them being weight gain). And that was not the first time I’d gone to a doctor with my concerns only to be met with a lecture about weight loss. Believe me, doc, if standard diet and exercise worked long-term for me, I wouldn’t be overweight today. Because I’ve done it all. Yes, really.

Now I’m with a new doctor, who has much better bedside manner, but cannot help me either because my labs are… normal. She might believe me. She may agree that “something” is going on. But without the labs to back it up, we can’t do anything. We have no direction to go, no clear path before us. Just me, being drained and feeling sick while being told, “There’s no clear reason why you feel that way.”

So then I circle back to that hypochondria concept. Am I imagining things? Am I being ridiculous trying to diagnose myself? Have I brought these symptoms on myself? Am I just trying to get attention?

I wish I had a neat, clean conclusion for you. I wish I had some inspiring words that would fill you with hope. Maybe I found the answer and maybe you can relate and you want to see what my answer is–maybe it’s your answer too.

But I don’t. I don’t have an answer. I have no inspiring words. I have no hope to share with you. All I can do is address the medical community and say that there are people like me out there, looking to you for answers. Looking for you to help them. And if you don’t have the answers? If science hasn’t caught up with their symptoms? It’s ok to admit that. But what’s not ok is to assume it’s their own fault, or that they are just looking for attention, or an excuse. It’s not ok to lecture them about diet and exercise when they’ve already told you they eat healthfully and exercise as much as their life allows. It’s not ok to shrug it off and refuse to help them simply because the labs don’t show what their symptoms show. Believe them. Listen to them. And if you don’t have the answers, at least be kind and show some empathy.

This post has taken several turns. It’s the best I can do with the subject being so complex and frustrating, and with my brain being as foggy and drained as it is.

But maybe being fog-brained and drained is normal. After all, I’m normal.

Should We Trust the Trustees?

When you live in the disability community like we do, you meet a wide variety of people. Different diagnoses, different experiences, different perspectives on life. And, yes, different interactions with the same people. Ask five different people their thoughts on a particular doctor, clinic, or charity, and you’ll get a dozen different answers. Yes, I said that right. Five people with a dozen different answers. Because sometimes those answers change over time, or sometimes the individual is conflicted and has had varied experiences with the same entity.

Something has happened recently within the Rett Syndrome community. There’s been a divide. A blog post came out, which was written by a Rett parent, that brings into question the reliability and honesty of a very well-known Rett Syndrome charity. Some would say the most well-known Rett charity. Because they’re the primary fund for research, they receive the most donations. So bringing into question their trustworthiness is big. Really big.

We (in the Rett community) are updated periodically about new discoveries, clinical trials, and general good news about the search for a cure. When I say cure, the hope and goal is to be able to fix the DNA, restoring it to how it should be without the Rett mutations. The reality of the clinical trials, however, is that they are testing drugs which are meant to decrease the symptoms enough to increase the quality of life for individuals with Rett. So there are two different end-games here. The clinical trials are basically buying time until the cure is found. Whether the cure is even possible remains to be seen, so many prefer to put their money on the clinical trials for symptom-suppressing drugs, rather than the pipe dream of a cure.

Parents whose children have a disability are indeed desperate, but some are naturally more cautious and cynical than others. I have one friend in particular who has become disenchanted after 20-something years of caring for her son with a severe disability. When she first got the diagnosis, it was easy to get on board with the primary charity organization, and they promised a cure in five years, ten years… They kept making new promises, all the while raking in lots and lots of money for research, and the parents never receiving a dime for assistance in daily living, or receiving any real support at all. The more she spoke with other parents, the more she heard about the charity being rude to them, dismissing them, or being painfully honest by saying that there would never be a cure for their particular variety of this disability. Thus, her trust was broken, and she is vehement about now warning others not only about that specific charity, but she also warned me when I was new to the Rett diagnosis, to not put too much stock in promises for a cure, and to not trust the larger organizations.

There’s a lot of money to be had in charity work. And the con is simple. Hang out that carrot of a cure in front of desperate parents and let them do all your fundraising for you. Sounds simple, right?

Well, it’s not that simple. You see, many of these organizations, and–to my knowledge–all of the Rett organizations, are run by parents of children who have that disability. So they have a vested interest in actually obtaining a cure, or at least some good drugs to help with symptoms, and aren’t going to solely be in it for the money. Could someone be so hard-hearted as to use their child as a prop and make lots of money? Of course that’s a possibility, but I would say that is less likely. It would be more likely for the group of scientists and researchers to be using the parents to keep their work funded, putting pressure on the charity organizations to get more funding, all the while knowing there would never be a true cure. That’s also a possibility.

Another wrench in this narrative is that there are families in clinical trials who have seen good results. Not perfect, not a cure, but improvements. And we know at least some of the money is going towards those trials. So for that, it would be worth continuing to support them, wouldn’t it?

The other thing to consider is that these organizations DO receive federal money to support their research. Parent-raised funds are tiny compared to the millions (billions?) given by much larger entities. So what would be the drive or purpose in exerting so much effort into taking advantage of parents if they are already receiving so much more from the government? It wouldn’t make sense for them to be desperate enough to hamper Rett parents for money if what parents contribute is almost negligible when looking at the whole of their budget. Wouldn’t be worth their time.

Yet at the same time, some parents have reported that representatives of these organizations are rude to them (and unfortunately I’ve seen this online for myself), that there have been whispers of “There will never be a cure…”, and there is the fact that these organizations continue to target Rett families as their fundraisers instead of contacting supermarkets, coffee shops, and the like for cross-community fundraising like so many other charities do.

It doesn’t make sense either way. And as a Rett parent, it leaves me feeling uncertain. Do we continue to support these organizations? Do we trust them? Do we push back and demand changes from them? Or do we sit back, confused, and try to stay out of the fray?

Personally, that last one sounds the most desirable. Then again, I avoid confrontation as much as possible and hate to be caught in the middle of things when there isn’t a clear answer present. And yet I’m writing this blog, bringing up these questions, and presenting this information to others. I suppose it’s a matter of making others aware. Like I say in my birth work, it’s about informed consent. It’s not always about who is right or wrong, but about the individual having all available information presented to them, and being empowered to make their own decisions confidently. That’s what this is about, I suppose. Giving my friends and family, who I know for a fact have donated their hard-earned money towards this organization, the chance to come to their own conclusions. The chance to do research on their own, look into the different charities available, and make their own decisions as to whether or not they will donate. Whether I will continue to promote them remains to be seen. This is still a new conflict, and where it leads is anyone’s guess at this point.

All I know is that my daughter has been made captive by Rett Syndrome, and as her parent, I would do anything within my power to free her of that prison. That, I think, is what we all have in common, whether we are just “normal” Rett parents, or whether we are the founders and trustees of large charity organizations. We would do anything to give our children a better life…

Stop and Listen

I was at the Art in Bloom Festival yesterday, talking with someone at a booth about a hot political issue. I actually agreed with him on the political issue, so we were making small talk, and I was telling him a little about our sweet Anna, and describing how a potential bill would affect her (and our family, as a result). The following [paraphrased] conversation ensued. See if you can spot where he went wrong and where I started to get frustrated. For special needs parents, it should be easy.

Me: Because she’s disabled, homeschooling her wouldn’t be as easy as the other two. It would make a bigger impact on our family to have to homeschool her.

Him: Have you tried detoxing her? I’ve seen so many families improve symptoms of autism with detoxing.

Me: Well, it’s not autism. It’s a genetic disorder, so… can’t really change that. It’s not a toxicity issue.

Him: But still, there’s so much in our environment, and surely a good detox would help with her symptoms.

Me: No, not really. She has a protein missing on a chromosome. It’s in her DNA. Nothing will change that.

Him: You might be surprised how much it can improve.

Me: Okay, yeah. We’ll look into that.

 

Friends, can you see the problem here? I’m telling this guy, who knows nothing about my daughter, nothing about Rett Syndrome, that no amount of detoxing will change the fact that there is a mutation of MECP2 on her X chromosome. But he continues to push it. If he had simply said, “Oh, it’s genetic. Ok, different situation,” that would be fine. I’d be happy with that. But I had to lie and say we’d consider detox to try and get rid of Rett Syndrome (the other Rett moms are surely doubling over with laughter at this point) just to get him to stop talking about it so we could move on in the conversation.

Don’t be this guy.

Don’t try to push your own opinions or agenda or perspective on special needs parents who know for an absolute fact that your remedy will not work to alleviate their child’s disability.

You all know (or you can look back at other posts and see) that I am all about natural remedies. I use homeopathy, herbs, acupuncture, chiropractic, and many other alternative and traditional remedies. But they can only do so much, and because I am familiar with them, I know their limitations. Detoxing will not cure Rett Syndrome. They’re working on a cure, which I am very hopeful for, but I can promise you that detoxing is not it. It’s quite simple, really. Just listen to special needs parents. Believe me, they know what they’re talking about. They know more about their child’s condition than many (if not most) doctors.

This also brings to mind an instance when a sweet older lady at a friend’s church, after hearing about Anna’s diagnosis, asked, “Well, have you prayed for her?” Again, I am not against prayer. I do it all the time. Multiple times a day. But to ask whether I’ve prayed for my disabled daughter? Ask any believing parent whether they’ve prayed for their typical child. I guarantee they have. Now ask any believing special needs parent whether they’ve prayed for their disabled child. That answer is obviously YES ALL THE TIME.

I have cried out in agony over Anna’s pain, communication barriers, and her prognosis for the future. I have bawled on the bathroom floor begging God to please take this horrible disability away from my precious little girl. And this lady. I’m certain she was well-meaning and wanted to encourage me, instill hope in me. But. This. Lady. has the audacity to ask a believing special needs parent whether I’ve prayed for her. Because clearly the problem here is not that God has allowed my daughter to have a dysfunctional chromosome, but is rather that I simply haven’t prayed for her. Clearly it’s because I’m lacking faith and not because… you know… it’s in her DNA. Literally a part of who she is.

Don’t be this lady. 

When you encounter someone whose child has a disability, don’t act like you know better than they do. Even if you are fully convinced that you know better, that you can cure their child, that you have THE answer they’re looking for… Just stop. 

Stop and Listen. 

I hate that I can think of at least half a dozen more of these scenarios that I’ve encountered. Some with health care professionals. Some with social workers. Some with everyday people. I’m more understanding with everyday people, but honestly if you are a lay person and not a professional, why do you think you know better than the parent of the disabled child? Or better than all the doctors, specialists, and other experts that we communicate with, consult with, and read published information and studies by, all throughout however many years we’ve had the diagnosis? You don’t know. Or maybe you do. But even if you do, we still don’t want to hear it. Because we hear it all the time and frankly we’re just tired of hearing it. So please…

Don’t be those people. 

Just stop. 

Stop and Listen.

 

 

 

That Mom in the Store

Not long ago, I was in Wal-Mart. Go ahead and judge me for feeding into the corporate machine. But when you’re a student, living on a single income, with three kids… Sometimes you just have to shop where your budget allows. That isn’t really the point of this, but I just had to step past that and shut down the haters.

What this post is actually about is a mother who was ahead of me in line. In my younger, less experienced, and certainly in my child-free days, I would have judged her. I don’t actually remember how many kids were with her, but it was probably four or five, ranging in age from maybe twelve down to three. Most of them, while a little energetic, were well-behaved and were listening to their mother as she told them not to play with the displays while the clerk rang up her large order. But the littlest one–he was a firecracker. A stubborn firecracker who had his sights set on one of those Kinder eggs (you know the kind–the hollow chocolate eggs with a little toy inside). He wanted it badly. But mom said no. He kept asking, she kept saying no. He threw a fit. And she just kept going with her purchase.

Again, in my less experienced days, I would have been annoyed. There were kids running around, one of them throwing a tantrum, the others interrupting their mom as she tried to keep her wits about her in managing the toddler, and I could see her stress rising. She kept her eyes down, not looking at the other customers or the clerk, would take deep breaths, and a couple of times had to speak quite firmly to her children.

To top it off, when she was done being rung up, she was writing a check. Others–including my younger self–might have been tempted to let out an exasperated sigh and complain on Facebook about how unpleasant the scene before them was turning out to be. How dare she have children in public! How dare that two- or three-year-old lose his temper in a public place! How dare those older children get bored after a long shopping trip! And how dare that woman have the nerve to use a check instead of a debit card like a normal person!

But none of that happened.

Instead, what happened is we saw the village emerge. 

Surely becoming embarrassed at her toddler’s tantrum and overwhelmed at all the moving parts involved in her shopping trip, she looked to the clerk and apologized for making a scene. “I’m so sorry,” she said, her voice quivering. 

Immediately the clerk, an older man around 60 or 70, replied with a chuckle, “Oh, don’t worry about it.”

I had been keeping quiet to not draw attention, because the last thing *I* want when my kids are having a meltdown is people looking at me. But in that moment, when she was feeling so vulnerable and, if I’m not mistaken, perhaps even on the verge of tears, I knew I had to add to that encouragement. I told her, “I’ve got three of my own. I’ve totally been there.” And I have. I have most definitely been *that* mom with three kids all going wild in the middle of the store. The customer behind me assured her it was all normal and told her it didn’t bother any of us.

In that moment, where we had all been hesitating, not wanting to bring more attention or embarrass her, we spoke up and reassured her that she was doing just fine. She was a mom, doing the best she could, and no one should ever judge her for that. Some kids are more challenging than others (don’t I know it!), and who knows what other factors were going on? Maybe it had already been a rough morning. Maybe the kids were tired, hungry, or just having a less patient day than others. Even if this was the norm, the fact is I’ve seen much worse reactions to kids’ behavior in the stores–both from the other customers as well as from the parents. But she was doing great.

Not only was it just a normal part of parenting that no one should be ashamed of, she was handling it well. She was staying firm with her tantrum-throwing toddler, she was being reasonable with her older ones, balancing boundaries with appropriate freedom, and though she had taken a stern tone with the ones who disobeyed, she didn’t yell, berate, shame, or threaten her children. She did an amazing job.

And yet, she still felt the need to apologize. I could probably make a whole other post all about how Americans today are less tolerant of children being children, how we have unreasonable and unrealistic expectations of children in this modern age, and how we need to accept children in each developmental stage, even at their worst. I won’t make an additional post about that (at least not today), but I will say this: Parents today do not need judgment; they need patience, understanding, empathy, and encouragement. 

I wish I had spoken up earlier, before she felt the need to apologize. And maybe next time I see a mom having trouble, I will speak up sooner. But the lesson here was clear. Let’s support parents, especially when their kids are being, well… immature kids. Let’s show them that they’re not alone, that we understand, that we have been in their shoes. Even if you haven’t been in their shoes, you can at least sympathize and be compassionate towards them. That’s my challenge to you today. Be kind to a parent who is struggling. Don’t look down on them–instead, lift them up. Give them a little of your strength so they can stay the course and feel confident in guiding their children. Don’t just refrain from judging or growing impatient; truly love them.

So Your Baby is Breech… What now?

In this season of change for myself, I wanted to take time to start writing more often, and with that writing, review some of the information I’ve learned as a student midwife.

Recently, the subject of breech birth has been coming across my path. Often when that happens to students–when a particular subject keeps coming up–we start to wonder whether that is preparation for an upcoming birth. I hope this is coincidence and not the truth, but I’m paying close attention just in case. I do have a new preceptor on the horizon, a very experienced homebirth midwife with whom I’ve worked for one birth a few months ago, but there are no births coming very soon for me. So–knock on wood–hopefully the next birth I attend will be smooth and easy.

All that prefacing to say… Let’s talk about breech birth.

First, what is breech? In short, it’s when baby is upright in the womb instead of head-down. A baby may have their bottom coming first with either their legs extended upwards (Frank Breech) or their legs crisscrossed (Complete Breech), or they may have their foot coming down first (Footling Breech). When it comes to breech, Complete is the ideal scenario, producing the fewest additional complications, followed by Frank. Footling does come with more complications, for a variety of reasons. A woman may make a different choice about what to do about her breech baby depending on what kind of breech it is, so it’s important to make a note of the different kinds of breech that may be encountered.

The big question is, Can this be considered a variation of normal? Or does it always mean that something else is going on and baby is in danger?

The answer is… there is no absolute answer. Some babies have come down breech (sometimes without anyone knowing until baby came out) and had no trouble at all. Some have come out breech and had many complications. I don’t think we can say there are any absolutes, but we can say, at least statistically, that breech birth does have a higher potential of creating complications.

Complications of breech could include cord compression (where the cord gets stuck and “clamped” by baby’s wonky positioning, cutting off blood supply to the baby), aspiration in the newborn (if baby startles with their head still inside, they could breathe in fluids, causing breathing problems later on), stuck baby (because the bones of the skull do not fold the same way they do in vertex–head down–presentation, it’s more likely for baby’s head to get stuck), and injury to the mother (mother is more likely to tear). There is also a higher risk of cord prolapse (when the cord comes out before the body, which is a serious complication), since the baby’s bottom doesn’t fill the pelvis and stop the cord from coming out like a head does. When a baby is coming breech, midwives will often prepare for the worst and be ready to resuscitate as soon as baby is out, due to the increased risk of complications.

This is not to say that anyone should panic if their baby is breech. Many babies are born breech without complications, with the help of skilled and confident care providers, and these can be amazing, empowering, beautiful births. My view is simply that each mother should be informed, and should make her choice based on the facts (both of her individual situation and on statistical information), and she should be aware of all her options before she decides. Informed decision-making is my only goal here.

So if your baby is breech, what are your options?

1. Spin that baby! The first step that most midwives will suggest is to visit http://www.SpinningBabies.com to start following an exercise regimen meant to turn the baby around from breech to vertex. Many times, the physiology of the mother (tight ligaments, torqued muscles, joints out of place) can influence a baby to turn breech, and releasing those can allow baby to turn. Other times, baby is just being silly, and doing certain exercises can encourage baby to flip around to vertex. Other non-invasive methods to encourage baby to turn head-down include moxibustion, chiropractic care, massage, and verbal instruction. Some are more evidence-based than others, and mothers should explore all possibilities.
2. Accept and trust. Some women feel breech is a variation of normal, and without absolute indicators of complications, believe they should birth breech without attempting to turn baby around, or simply trust that baby will turn around when it’s time to birth. While that’s a beautiful thought, the higher incidence of complications (which cannot be predicted) should also not be dismissed or ignored. I do advocate for women to make their own choices in birth, but I also strongly feel these choices should be informed, and a long discussion should be had with the midwife to review the risks versus benefits.
3. Perform an External Cephalic Version. This procedure involves a care provider physically turning baby from the outside. They will oil up the mother’s belly to provide lubrication. Then, with firm-but-cautious movements, will use their hands to guide baby into a head-down position. This should only ever be done by a care provider who has received full training in how to do it, and mothers with anterior placentas (where their placentas are located at the front of their belly) should only have this done in a hospital, where an ultrasound can keep track of placenta health and show the care provider where to put (and not put) their hands. It is more invasive, but compared to the risks of delivering breech, may be worth a try.
4. Schedule a cesarean. This is always an option. Perhaps not the ideal option for all women, but in many areas, it may be the only option, if doctors trained and experienced in breech are not locally available. Breech is not the kind of birth you want to pressure your doctor into. If they are not comfortable with it, a cesarean is the safest option. You do not want an uninformed care provider accidentally causing more harm by delivering breech without the knowledge of how to do so. It is quite different from vertex birth, and requires an entirely different mindset. The same goes for midwives. If your midwife is not comfortable with breech, or if she is not permitted by her license to deliver breech (birth centers in Oregon are not allowed to deliver breech unless birth is imminent), and if turning techniques have not worked by the time you are in active labor, then it likely is the safest option to have a cesarean.

I don’t want to make this too long, so I’ll stop there. But if you are still curious about breech, you can always watch videos on youtube about it, google it on your own, or have a chat with your midwife about the available options for your area and per her license.

Here are a few resources to get you started:

Definition, Statistics, and Other Details

Evidence Based Birth: Evidence for ECV

Spinning Babies: About Breech

Ina May Gaskin’s Take on Breech

Peggy O’Mara’s Take on Breech

 

 

 

 

 

 

New Year, New Identity

It’s hard to know where to start. I’ve not written here in a long time because I’ve been busy. So very busy. In particular, I’ve been busy in my midwifery apprenticeship. But that came to an end today. I’m not giving up on midwifery–it’s too much a part of who I am, and I’ve invested far too much to give up now. But I had to come to a point of recognizing my limitations, and knowing that the way I was learning it was not the way that was right for me. It took me two years at that apprenticeship to realize it, but today I finally said that I was ready to take a step back. I only wish it hadn’t been after several months of struggling and barely hanging on by a thread.

Being in a birth center is wonderful for my OCD brain. Everything in its place. Plenty of spare supplies. Knowing where things are. Having the routine of what needs done. But when exhaustion, family issues, and mystery health concerns crept up on me, it took away my organization, my memory, my growth. I was stunted by my own personal struggles, and couldn’t progress. Not when I was being pulled in so many different directions. Others can handle it, and I admire them for it, but I couldn’t. Not in this body, not with the family I have, not with the limited resources available to me. I had to acknowledge my limitations, my mistakes, my failures.

As I said, I won’t–can’t–give up on midwifery. But for now, it’s on hold. I don’t know when I’ll find a new preceptor. I don’t know when I’ll finish. I don’t know how that will all fit into my still-crazy home-life. With one child severely disabled, another being homeschooled with multiple learning disorders, and the third being so intensely high-need, I will likely never escape that need to attend to my home, first and foremost. While others may manage their homes and their midwifery training with grace, they do not have my children, and I can’t keep pretending that they don’t need more care and attention than other children.

They also don’t have the health concerns that I have, which can’t even be named because I don’t know what’s going on with me. I don’t know why I’ve been having episodes of vertigo that send me to the ER. I don’t know why I have all the symptoms of hypothyroid and adrenal fatigue but all my labs are in perfect range. I don’t know why my previously perfect blood sugar and previously textbook blood pressure are both rising (while keeping a low-glycemic and mostly whole foods diet). I don’t know why I feel as if I could sleep all day and still never wake refreshed. I don’t know why I suddenly have the memory of a goldfish and the emotional stability of a thirteen year old girl during her first PMS. These are all mysteries which doctors are yet to solve, and which are affecting me greatly in both my career and my home life. Until I find a way to manage these things, and until I can build up the energy required to care for mothers and babies, I must step back and care for myself. I must attend to my own body before other women can trust me with theirs.

So with this break, though I keep reminding myself I’m not giving up, I feel a loss of identity. I feel a loss of self. Over the past two years, I’ve found so much of my identity in the title of “student midwife”. I thought I had found a home in the birth center where I’d been training, but it turns out that birth center work–at least, in a birth center as busy as that one is–cannot work for me. It cannot be sustained with all the other plates I’m spinning. I made friends which were more like sisters. I had purpose there. Now I feel everything is on hold, and I don’t know what I’m doing.

This is not to say that I don’t still have those friends, who are more like sisters. They were, and continue to be, some of my biggest cheerleaders and supporters. My decision to leave was not one that has resulted in being ousted or rejected. I don’t feel rejected at all. I feel loved, supported, cared for, and missed. I have simply come to realize that in this season of life, I cannot be part of the staff. At another time, perhaps when my children are older and my health is in another place, I would be welcomed back, if I was ready. But for now, I’ll no longer be wearing the logoed scrubs, or a representative of the birth center (though I believe I’ll always carry a little bit of it with me wherever I go). And that is my choice: for my family, for my health. There is no bitterness or anger; there is only the acknowledgement that I had other priorities in my life, and I couldn’t do my job well while juggling those other things. I will always be a part of the Rogue family, just not on staff at this time. Those midwives, and the students I worked alongside, are some of my closest, dearest friends. They always will be. In that kind of intimate work, you can’t help but feel connected to the people you work with. But for me, my time there–at least for now–is complete.

I’m trying to enjoy the pause. Trying to spend more time with my kids, tidy the house a little more, study whenever possible, and care for myself (body, mind, and spirit). But the identity I had found at the birth center is gone. And now I can’t help but ask, “What now?” and “Who am I?”

I can’t help but question my decision to keep moving forward and to continue pursuing midwifery. Is this the right career for me? Can it be done? Will I ever succeed? A great loss like the one I’ve experienced will of course bring those questions to mind. Even when it’s my own decision, and I know it’s for the best, I have my doubts about my own ability to finish what I’ve started. I must keep telling myself it’s not over. I have no idea how it will be accomplished, but I will finish what I set out to do. I will be a midwife–someday. How soon that will happen, only God knows.

But for now, in the pause, in the time between, I will heal. I will care for my family. I will prepare for the future. And I will take on those identities that had been in the background. Wife, mother, homeschooler. I will rest, grow, and strengthen myself for the journey ahead.

There are probably dozens of inspirational quotes I could end this with. But this one, it seems to me, is the most poignant for the situation and one that is speaking to me the most in these dark moments. I hope it inspires you as well.

 

 

“Shy” Is Not a Bad Word

 

I’m frustrated. 

Several times over the past few years, I’ve found conversations online as well as articles and blogs which put shyness into a negative connotation. And really, these conversations have covered it all.

A child’s shyness is something to be overcome.

They need to come out of their shell.

Maybe there’s something wrong with them and they need a dietary change.

Did they have vaccines?

Have their blood tested for a genetic disorder.

Don’t call them shy. You don’t want them to feel bad…

Utter nonsense–all of it!

Can we finally accept that shyness is a personality trait and not something to be ashamed of? Not something that needs fixed? Not something that our children should feel shame about?

I’m begging you. Please. Let’s stop stigmatizing shyness! 

As a shy introvert (the two are different), I have had to learn social skills to function in a world primarily made of not-shy extroverts. I’ll admit it’s resulted in some social awkwardness and too-frequent nervous rambling in an attempt to connect with people… But on the whole, I’m a pretty well functioning adult. But no one pushed me to “get out of my shell”. No one was ashamed to call my shy. No one thought it was a bad thing. It was simply… who I was. Who I still am, at my core. I can cover it up when necessary and pretend to be a little less shy, but when I lean into my own personality, that’s who I am.

I also have a shy daughter. She uses that word herself. I find it empowers her to accept who she is, and gives her vocabulary to describe how she’s feeling at that time. She will now say, “I’m feeling a little shy right now.” And I totally understand that, so I don’t force her to say hello to the elderly stranger at the store.

Unfortunately, that elderly stranger sometimes confuses shyness with rudeness. I try to smooth it over a bit, explaining, “She takes a while to warm up to people, and that’s okay.” Sometimes they accept this, sometimes they don’t. But it doesn’t matter what a stranger at the grocery store accepts or doesn’t accept. I accept my daughter for who she is, she accepts herself for who she is, and that is enough.

As a Christian, I believe that God created us intentionally, with personalities that ultimately will be used to His purpose. Do some people change those personalities and cling to the negative attributes instead of the positive ones? Absolutely. That’s why we have people struggling with addiction, anger, and deviant behavior. But shyness is not one of those negative attributes. It’s a variety of the human experience.

Of course I want my daughter to feel brave and confident. I want her to make friends and to be polite. I want her to not feel fear when she meets someone new. But giving her that encouragement, instilling in her that confidence, and bolstering her bravery–that all begins with accepting who she is and not making her feel like there’s something wrong with her. She doesn’t need to be fixed; she simply needs to be loved. 

So let’s stop viewing shyness as a negative attribute. Let’s accept and love our shy children, and strengthen them with that love and acceptance. Let’s recognize shyness as just another personality trait, and not as something that needs corrected.

Shy is not a bad word.

 

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What do you think? Are you a shy person, or do you have a child who is shy? What has your experience been with shyness being viewed negatively? How do you think we can change this perspective?