The Heavy Burden

I was reading in Heart & Hands today, but had to stop when I nearly came to tears. It was nothing tragic, or even touching, in the text. It was simply the weight of it all. Understanding how great a burden midwives must carry when they enter a birth. You cannot place yourself under that responsibility in a light manner. You cannot say, “Everything will be just fine”, because you don’t know that it will be. Yes, statistics are on your side. It is most likely that the only complications will be small ones, but there are still so many unknowns. So many possibilities that you cannot plan for, because they don’t come to light until you only have a split second to recognize, and then act accordingly.

As I read through the chapter on Complications in Labor, I couldn’t help but imagine myself in each situation. I had to walk myself through the steps given, even holding out my hands to get a grasp on the positioning in the “Screw Maneuver” for shoulder distocia. As I walked myself through the procedures for each complication, I became more and more aware of the things that could go wrong, and how I–when I become a midwife–will need to respond to each one, and what a great burden that will be.

This is not to say that birth is scary–in most cases it is not; most women labor and birth without complications, and everyone is happy and healthy in the end. This is also not to say that it is too much for me–that I would give up my pursuit of the field. Rather, it has impressed upon me the sacredness of it. The importance of approaching my study in midwifery with great respect and careful attention. The need for a thorough education, an uninterrupted focus, and an intentionality in my reading. Being acutely aware of the responsibility I will carry, and understanding the risks and importance of the field, I can enter into it with informed consent to the world of Birth.

There will be physical exhaustion, mental consumption, and emotional fatigue. But there will also be great joy, exultation, gratitude, and beauty. The bringing of life also takes us closer to the threat of death. But if we pay close attention, if we keep our calm, are confident in what is to be done, and if we remain intuitive, we will have the tools we need to do all we can to bring life and thwart death.

It is a heavy thing, to be burdened with the task of safeguarding new life. It has washed over me like a fierce tide, preventing my breath for only a moment until the water subsides and I can take in a lungful of refreshing air. It reminds me of why I pursue it–that first breath, coming out of the womb. It’s said that when a woman gives birth, she is also born into motherhood. So, too, when a new midwife–or future midwife, rather–begins her focused pursuit of that calling, she is born into the select field of women who heard the calling to be the guide for new life to enter our world. She comprehends and accepts the risk, knowing that the reward will be all the greater for those willing to step forward and carry that burden.

I am not frightened by this prospect. But gone are the notions that every birth I’ll attend will go in a perfect manner. Gone are the naive assumptions of simplicity. And here comes my burden. Here comes the weight of guiding new life into our world. Here comes the heavy yoke of attentiveness. Here comes hours upon hours of study. Here comes the understanding of my purpose in the field.

Here comes my calling. My birth into midwifery. My first breath.

Vacation!

We needed a vacation. Rarely do we take trips as a family. I may take the kids somewhere, but all of us together? Hardly ever happens. Maybe once every few years. But this summer, we made it happen. We just had to make it happen. This past year has been difficult. Many changes, many challenges, many times where we felt like we were falling apart at the seams. But we all came together for vacation. So here’s what we did–and why it matters.

We started our trip by visiting my parents on the coast. The salty ocean breezes were refreshing and  invigorating. As soon as we reached the coast, we rolled down the windows, inviting high winds to flow all around the van. Anna was having a blast with all the wind–she laughed hysterically as it blew her hair in all directions! We didn’t “do” a whole lot there. We did a little walking along the boardwalk in Depoe Bay. Looked out over the gorgeous Oregon coast in Boiler Bay. Went to my parents’ church and met a few people. But mostly, we just hung around the house, went for a little walk in the woods behind their house, and chatted about this and that. I wish my parents lived closer (or that we lived closer to them) so my kids could spend more time with them, but we take whatever we can get!

After a couple of nights with my parents, we headed off to the family retreat put on by Joni and Friends. From the moment we set foot in the camp, we were at ease. That doesn’t happen often. We were greeted warmly by the whole group of volunteers, and they made everything about checking in so very easy! We met our WONDERFUL “buddies” (as my daughter calls them)–aka “STMs”, or “Short Term Missionaries”–and set up in the cabin. And then a strange thing happened. The kids went off to explore with their STMs, and we had about an hour to ourselves. We walked, talked, saw some deer… It was incredible. I adore my kids to pieces and love spending time with them, but even people who love each other deeply still need a break sometimes.

The following day, we had some fun with “creative hair day”: Leah had her hair spray-painted pink, Damien got a faux-hawk, and I put my hair up in curlers. I normally wouldn’t go along with little games and events like that, but for some reason, at this particular camp, it just came naturally to participate. The first full day included a lot of getting used to the flow and pattern of the day. After breakfast, we went to an all-family worship service. I smiled when I saw that kids were not only allowed, but even encouraged to come on stage and sing along with the worship leader. They were not expected to sit quietly in their seats, or have a seat at all. Some kids jumped around, some walked up and down the aisles, and some (like Leah) tried their hand at ribbon sticks and tambourines.

Following worship, the kids went to their Program. Little ones went in the nursery; bigger kids went to hear a story, do crafts, and a few other activities; teens and adults with I/DD had their own programs; and adults stayed in the meeting house to hear from the camp pastor. The camp pastor was Brian Sakultarawattn (please don’t ask me to pronounce that last name–I’m still trying to figure it out!). He and his family are incredible people, and we highly enjoyed hearing their story of amazing faith, and had a great time chatting with them over coffee one afternoon. If you’d like to hear their testimony, here is a link to an interview at SD Rock Church.

After we heard from Brian as a couple, the men and women split up into smaller groups. The women each had a group of about 5-6, and we talked about a variety of subjects. We talked about our kids, our marriages, our daily life, our fears, struggles, and victories. I won’t betray the confidentiality of that group, but suffice it to say, we found a lot of common ground, and we were all encouraged and strengthened by being in that group.

We came together again as a family for lunch, and then we split up again in the afternoon. At this point, you may be thinking, “Isn’t this family camp? Why are you spending so much time away from your kids?” As I said before–sometimes people need to be apart from the ones we love in order to reconnect and appreciate each other more. And particularly for special needs parents, time on your own and not being needed is an incredible gift. We love our children fiercely–but there is quite a bit of exhaustion and “touching-out” that goes along with special needs parenting. Taking time away from your children helps to re-energize you, give you perspective, and makes the reunion with your children all the sweeter. And let’s be honest–the kids probably enjoyed the break from us as well! Leah cried almost every evening when she had to say goodnight to her buddy. You’d think going back to the cabin with mom and dad was a punishment for her!

So at 4:00pm, the STMs got their break, and we all took some quiet time in the cabin. Sometimes the kids slept, sometimes they didn’t. But having down time, without “going-going-going” was good for them. After that was dinner, and we were reunited with the STMs. There was a little down time between dinner and the evening worship service. Once again, the kids were encouraged to worship at the front with lots of noise and movement. Each night, we had something a little bit different for our evening get-together. Tuesday was a magician; Wednesday was a talent show (details below). Then we had dessert (!) outside, with a little hanging-out time.

Wednesday afternoon was a “pampering day” with the ladies. Oh, was it wonderful! Pedicures, manicures, massages, foot soaks, haircuts, and clothes! Yes, clothes! They told us before the camp that we would be given two Cabi tops, but when we arrived, they gave us at least a couple of full outfits! What a blessing! The afternoon was over too soon. And what did the men get? Steak. Lots of steak. In the evening, we had the talent show. It was as adorable as it was touching. There were a lot of performers, and each one was given a full round of applause. What’s incredible about a special needs family camp is the understanding that something that wouldn’t be considered a “great talent” for a typical person, suddenly becomes an amazing accomplishment for a person with special needs. And those who performed who did not have special needs were just as enjoyed. Some were silly, some were fun and energetic, and some were inspiring. Everyone had fun at the talent show! And yes, our family–just one of us, actually–did participate. Leah performed a dance with a ribbon stick. She was shy at first, but then she warmed up and did a great job! I’m so proud of her for getting on stage and dancing in front of everyone!

Thursday’s highlight was definitely the square dance. Even Mitch joined in! It took some new friends pulling him into the gym and “forcing” him, but he did it. It was lots of fun! Even after I had to stop when Damien wanted to nurse, I still had a blast watching everyone else dance, and hanging out with our new friends. But at the end of the evening, there was a slight sadness. We knew it was our last night, and we didn’t want it to end. We wanted to just… stay. To live at camp. With our STMs, of course! But we had to leave. To return to real life.

But before we returned to real life, we visited my cousins in Portland. After driving their insane freeway system, Mitch says we’re not moving there. Well, that’s still up for debate, really, but it was not fun. However, while in Portland, we visited the zoo, which was loads of fun for the kids. But mostly, we just spent time with our family. It was just like old times, when we hung out back in San Diego. But now we have kids. Which actually made it more enjoyable in some ways. Watching our kids play and hug each other was heart-warming. It made us wish we were closer to them. But life is what it is right now, and we can’t move everywhere our family is. We can only be in one place at a time.

And then we returned home. To real life. With housework to be done, dinner to be made, school to start, and appointments to attend. Coming back after vacation is hard. Not only is it getting back into the routine of daily life, but it’s having to wait another year before we (hopefully!) see our friends again. It’s going day-to-day on our own (we miss our STMs!). It’s the mountains of laundry still waiting to be caught up on. It’s trying to catch up on sleep. It’s missing our family.

But now we have more to look forward to in the future. We have friends and family with which to reunite. We have that week of relaxing to look forward to. We have the hope of learning, growing, and becoming a stronger family. Year by year, we gain traction. It gets easier. It’s less of a shock–it’s just life.

If you have a loved one with special needs, I urge you to go to this camp. I would also urge family, friends, church members, youth groups, and more–to consider being an STM. It is highly rewarding and will change your life. There will be two (separate) weeks available for camp next year, as the need has grown. With the need for special needs family to have a retreat, there is also the need for more volunteers. And not just STMs, but those who would give of their time to give a massage, cut some hair, bring a therapy animal, offer counseling, or heft some equipment. Volunteer in whatever way you are gifted. I promise, it will be well worth your time to do so.

I’ll close with this year’s verse, Romans 15:13…

“May the God of hope fill you with all joy and peace, as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.”

8 Tips on Packing for Vacation

Yesterday we packed to go on vacation. We leave today, and apparently my littlest one is too excited to sleep. While the house is still quiet–before there’s breakfast to be made and more stuff to bring out to the van–I’d like to share with you some tips on how to pack for vacation.

1. When packing your baby’s clothes, select the exact number of outfits that you think you will realistically need while on your trip. Now double it. It’s a scientific fact that babies have more blowouts, baby food mishaps, and clothing needs when you are away from home.

2. For yourself, pack… whatever is clean and fits. By “fits”, I mean both fits on you (don’t bring those “when I lose 5 more pounds” pants) AND fits in your suitcase.

3. Bring toys. Lots of toys. Because the children will get bored.

4. Be sure to stay up late the night before you leave. Don’t do anything important. Just veg out a little, even though your baby is actually sleeping (it’s a miracle!!!). Don’t worry about being tired while you drive. Lots of coffee and some good tunes will take care of that.

5. Speaking of music… Be sure to have your husband make up a music list to load on an SD card for the trip. Pray he puts things on that you actually like.

6. Don’t forget extra diapers. That jumbo pack that usually lasts you a month?? Yeah, bring the whole thing. I know you’ll only be gone a week, but… refer to #1.

7. Make a list of things you will need to bring on your trip. Check it twice, or even three times. Check it again once more before you leave. Even with all that checking, you’re sure to still forget something. But don’t worry–you can just buy whatever you need along the way. For twice the cost of what you paid for it back home.

8. Don’t forget your phone charger.

 

Have any packing tips for our readers (or for me)? Post them below!

Becoming a Balanced Doula

I recently attended a birth where intervention was necessary. In short, it was an induction leading to cesarean. I can’t give too many details for the sake of client confidentiality, but suffice it to say, it was a difficult labor and birth. And it was the first time in my five years as a doula that I recommended cesarean. It was a little foreign to me, to tell the truth. Isn’t my job to prevent those kinds of things? That’s what all the “Reasons to use a doula” lists on the internet say. So shouldn’t I be pushing the parents to keep trying for that natural birth?

No. That’s not my job.

My job is to support and to help the parents make the decisions that are best–safest–for their family. And if that means suggesting an epidural, or recommending cesarean, then that’s what I will do.

I feel that in my short time as a doula, I’ve become a little more balanced. I’ve been to a few home births, a couple of birth center births, and a few hospital births. All but one of the hospital births I’ve attended have been inductions. One was a high-risk pregnancy with low amniotic fluid and the baby was at a great risk of infection; two were after ruptured membranes and no active labor. Some doctors have been more in favor of natural than others. Some nurses have been friendlier than others. But regardless of the situation–no matter what interventions the mother opts for, or what choices she makes in her labor, my job is to support.

And really, when you think about it, sometimes those inductions need more support than the natural labors. Trying to get into labor–the stress, the pressure, the time constraint–I’ve been there. I’ve had that experience myself. And then the added pain of Pitocin? Yes, that mama is in great need of support.

Some doulas become snobbish in which births they will or won’t attend. Some will only attend home births. Some will only attend hospital births. I’m comfortable in either setting, and I’ve found that I’m also comfortable helping mom to make the decisions that are best for her and her baby. I won’t speak for her–that’s not my job–but I will help her to weigh the options and discuss the risk and benefit for each possibility.

But again, I think I’ve become more balanced. No longer do I hold to the ideal that a natural birth is the only “good” birth. Nor do I assume that every mom who had an intervention is facing depression and guilt over her choices. Sometimes those choices are the best choices. And if I can give mama and papa enough support to accept their decisions, to be happy and comfortable with their decisions, even if–or especially when–those decisions weren’t on the birth plan, and were not what they had dreamed of in their childbirth class, then I have done my job.

There have been births where I have felt almost useless. After a few hours, they didn’t need me. But after the fact, they tell me, “We couldn’t have done it without you. Thank you for being there.” Maybe they don’t need me for the whole birth. Maybe they just needed me as “training wheels”. Maybe it only being the two of them at the birth was exactly what they needed. But knowing that I was there when they needed me, and that I gave them the support that they needed in those moments, and that I fulfilled whatever need they had of me for that birth… knowing that, I can feel that the birth was just as it needed to be, and that I played the role that was just right for that specific birth. Whether I rubbed her feet, or helped her breathe through contractions, or told her, “It’s okay to get the epidural,” I know that whatever I did was just what they needed. And that is my job.

That is what a doula does. Listen. Educate. Support.

When Change is Needed

I thought we had the perfect curriculum. A blend of three styles of teaching that would of course come together perfectly to create the perfect homeschool experience for my children. But halfway through kindergarten, we realized two things.

1) Leah is not ready for kindergarten. We need to hold her back.

2) This curriculum is not right for us.

Deciding to hold Leah back was not as much of a decision as it would seem. Please don’t misunderstand, Leah is a very bright young girl with loads of imagination and intelligence. But she’s not quite ready to focus on school. We’re working on it, and she will get there, but school was becoming a serious problem for us, usually ending in tears (sometimes hers, sometimes mine, sometimes both). And since we had actually started her early, we weren’t really holding her back–we were just waiting until the time she would have normally entered kindergarten, had she been in public school. I wrestled with it for a while, but I talked things over with some friends from church (who were all teachers), and they confirmed my suspicions that she wasn’t quite ready yet, and we needed to wait another year, and slowly build up to it in the mean time. So that’s what we decided to do.

On the second issue–curriculum–I’m going to try very hard to be neutral about this. Different curricula fit different families, in different seasons. Unfortunately, the only way to know for certain if a curriculum fits or not, is to try it out. You know… spend hundreds of dollars, not to mention precious time and energy, all to determine that yes, this is a good match, or no, it’s not a good match and you just wasted a bunch of money. It’s really the only way to know for sure. So the first few years of homeschooling, for some families, looks like something completely different every year. “We’re going to do unit studies… Scratch that, we’re going Classical… Well, that didn’t work; how about Traditional?… No? Fine. We’re unschooling.”

Also unfortunately for us, we had purchased first grade from this particular curriculum company, which means that not only did we discover, halfway through the year, that we’ll be a) pushing kinder out another year, and b) switching curricula, but we also spent $250 on curriculum that will not be used. So now I’m trying to sell my never-used curriculum at a discounted price–at a total loss to us, that is–in the hopes that I will salvage some of what we spent on it. Talk about buyer’s remorse!

And it’s not a “bad” curriculum. I’d still recommend it for some people. But it doesn’t work for us. I won’t go into all the details, but suffice it to say, it wasn’t a good fit, and now I’m glad we’ve given that a try. It was a nice practice run, and it helped me to narrow down was does work for our family, and what Leah needs from me in order to learn. But, yes–unfortunately we did waste money, and we’re stuck with it for now. If we can’t sell it, we’ll try to make some use of it, because that’s just the kind of thrift-minded people we are.

It was time for change, and we changed, despite all the reasons not to. Those reasons were financial (let’s just use what we’ve already paid for), emotional (I don’t want Leah to feel bad about being held back), for the sake of convenience (we already started kindergarten; we might as well finish), and from pride (I don’t want to admit we were mistaken). These reasons were outweighed by the overwhelming sense of RIGHT. It was right to hold her back, even though it was hard and inconvenient. It was right to change curriculum, even though we had already started the other one, even though we had paid for the next year, and despite my pride not wanting to admit I was mistaken.

I’ve also had two friends change their curriculum or homeschool plans in the past few months. They cited similar reasons:

The format of the curriculum either wasn’t a good fit for their child’s learning style, or didn’t suit their family’s needs.

They were pushing too hard in one direction that they thought was right, but it wasn’t right for their child.

They wanted to actually enjoy school and not be burdened by the demands of a curriculum that was modeled too closely to traditional school.

And things may change again in the future. But the important part is being willing to change. To be flexible and pliable; able to move and adjust as needed. The only thing that is constant is change. We have to learn how to change willingly and gracefully. Changing begrudgingly, bitterly, grumblingly–that causes more pain and anguish, and makes the change so much harder. To accept the change with faith, joy, and humility–eases the growing pains and makes the change more bearable. In fact, I’m now excited for the change. I had my misgivings in the beginning, but now I see what a relief it will be, and I look forward to the change. We will continue to do little things here and there to keep her mind active and retain what she’s already learned, but the coming days will be so much easier and therefore, will produce more learning, as there will not be the distraction of frustration and discouragement.

Change is good. We’re looking forward to it.

 

So what changes have YOU made lately? What are you looking forward to in the near future? What kinds of struggles or challenges have you met in that process of change? Do you now see the benefit in change?

 

Curious about which curriculum I’ve chosen in place of the old one? You can follow this link to find out more!

I took a week off social media and here’s what happened.

I was in a funk. I was tired from a baby keeping me up all night, which in turn made me want to just sit all day. I procrastinated house work and grumbled to myself when I did the things that couldn’t be avoided–making dinner, changing diapers, waking up to give Anna her meds… I don’t blame Facebook and message boards for my funk, but they weren’t helping, either. If I used those outlets as an intermediary and a cure for my lethargy, nothing would ever change. I would remain where I was, and that wasn’t good. Having dealt with depression in the past, I knew I needed to be proactive in my approach to this funk, before it turned into something more serious.

So here are a few of the things I did do this past week, which were changes (even if only very slight changes), and which helped me to dig myself out of the funk.

1. I read!

I. Love. Reading. When I was young and had no children (or, let’s be honest, any real responsibilities other than school and a few simple chores), I read all the time. I’d read at school, at home, on vacation, on missions trips–I was always reading something. But not long after I had children, my reading-for-pleasure quickly disappeared. The only reading I would sometimes do, when I remembered or had time for it, was parenting books, and maybe a devotional. I’d turtle through them, or sometimes I’d just stop halfway through and just forget about them. Well, I still have kids, so I’m not doing any marathon reads anymore (where I’d read a book in a day–usually 8 hours or less), but before, I was spending my “few minutes here and there” between chores, or while nursing, or when Daddy got home and I could take a break–catching up on social media. So instead of my couple of free minutes being used to scroll through my news feed, I spent it reading a few pages of a book. I have yet to read an entire chapter in one of these intervals, but little by little, I’m getting through them.

2. I wrote

I have a few writing projects I’ve worked on over the years. Sometimes I get stuck and put a project on the back burner for a while. Since having Damien, everything has gone on the back burner, and I’m lucky to get one blog post out a month (as you can see for yourself…). But once again, I’ve redirected. Rather than using that sweet hour (sometimes two!) when both of the little ones are napping–after laundry is folded and the floor is swept and other chores are done–to get on a message board and chat about the topic of the day with strangers, I am refocusing to use that time on things I once enjoyed. I still enjoy them, even though I tend to hit a wall quite frequently. It turns out, sleep deprivation is not very conducive to figuring out challenging plot points and creating stories more than a page long. Still, being able to edit through an old project, or add just a few paragraphs, is a nice break from my old rut.

3. I reorganized

I sorted out children’s clothes, set up a new chore chart for Leah, cleaned off my little table, filed things away, arranged curriculum… I did all sorts of organizational projects. It wasn’t that these were areas previously neglected, but that I had more wiggle room to figure things out. I could take my time and not feel stressed, even when I didn’t finish something in one sitting.

4. I got bored

Even with the redirection towards things I hadn’t done in a while (reading and writing, specifically), those things only satiated for so long. This concerned me. Am I so now programmed to move at the speed of this world that I can’t sit for just a few minutes without needing to be doing something? Of course, I’d also wonder in these moments of boredom, whether I was forgetting something that actually needed to be done–a phone call to be made, a load of laundry needing attention, a child… But boredom can be good. When Leah asks me, “Mommy, what can I do?” I try not to give her any specific directions. Too much these days (in my opinion), children rely on their parents (or other adults) to tell them what and how to play. Should parents be involved? Sure. But not to the extent that a child literally cannot think of a single thing to occupy their time without the help of an adult. Children need to exercise their creativity, resourcefulness, and initiative to cure their own boredom. And my boredom reminded me of that. I needed to re-learn how to utilize my own ingenuity to rid myself of boredom.

5. I texted and emailed

Rather than using Facebook to contact people, I found myself texting them more. I also became more specific in who I spoke to. Things that I may have posted as a status on Facebook were texts to certain people instead. I became more intentional in my communication with others. I also emailed longer messages to people, and in so doing, I realized that I didn’t have the email addresses of many (most?) of my friends, or even close family. I’m not sure of the implications of that, but I did find it interesting, considering that 10(ish) years ago, my emailing was much more personal, and prevalent. I currently use email for receipts of online orders, contacting Anna’s service providers and coordinators, and a few email list-serves. But I rarely use email for contacting friends and family. Again, nothing really good or bad about that–just interesting.

6. I quit.

I stopped my social media fast one day early. It wasn’t because I gave in, or because I couldn’t take it anymore. It wasn’t even because Facebook kept emailing me that I had 47 notifications. It was because it had served its purpose. I had been refreshed, and I had come out of my funk. I was ready to be with my friends and family again. I’m glad for the reprieve, and now I am more equipped to manage social media in the future. I can set limits and boundaries; I can use it more responsibly and be more intentional with my posting. I can find other things to do in my down time that aren’t quite so redundant as scrolling through my news feed. I can make time for reading and writing. I can text and talk a little more one-on-one with friends and family. I can do all of those things. I could before, but now I’ve retrained my brain to explore other options and give myself a little more variety.

I enjoyed this exercise in self-discipline and redirecting. I really do think that everyone should take a break and mix things up every once in a while. Maybe you don’t need a whole week (or 6 days), but maybe you just want to regularly take one day a week off, or one day a month. Maybe you just want to appoint only certain hours, or attach specific conditions so that you use social media more responsibly, and aren’t putting yourself in a rut. Take the time to think about it, and consider whether or not you would benefit from switching things up and taking time off social media. Like me, you may be pleasantly surprised at the result.

Embracing the Disability

Any special needs parent will tell you that they went through a period of grieving and denial. Even if they knew “something” was going on, they didn’t always accept it. Acceptance comes in waves. Sometimes you fight against it, and sometimes you go with the flow. Acceptance doesn’t mean enjoying the disability, or being happy that my child is disabled. It means I’m no longer pushing angrily against it. I fight FOR my child; not AGAINST her disability. It is what it is, and until there’s a cure, it’s here to stay. There’s no use wasting my time and energy in a fight against something that isn’t going away.

And perhaps it’s hard to describe. Parents of typical kids, with no special needs or disabilities, may find it hard to understand. I can be angry with the disability–I can want better for my child, and mourn the losses we experience–while still accepting it and even embracing it.

Embracing the disability means accepting it in a way that is helpful to my child. Instead of “getting by” with as little as possible, I will make use of every resource available to make life more livable for us.

It means… giving her Zyrtec when I would normally just let allergies run their course–maybe treating the symptoms homeopathically, or helping it along with raw honey, but nothing so aggressive as actual allergy medication. But when I see her so very frustrated at her sinus headache, rubbing her nose (and thus wiping snot all over her face), and generally irritated at the whole thing, I’m willing to give allergy medicine a try.

It means… preparing myself for the possibility of her someday needing a feeding tube. We are so very grateful that at this point, she can still swallow food without choking, she’s still in a normal BMI range, and she’s generally healthy. But we also know that the time may come when those things could decline, and we might need to consider a feeding tube. And I’m willing to go that route. I’m not going to stubbornly wait until she’s dangerously malnourished, or until feeding her solid foods is dangerous (if she chokes), or until it’s our absolute last resort. I won’t waste time in denying that reality. I’ll be ready for it.

It means… getting a disabled permit. Yes, she still walks. But she gets fatigued and will sit/lay down in the middle of a parking lot if she doesn’t want to walk anymore. And if she does have plenty of energy, she will dart. We have a special needs stroller, now, and it takes some room to set it up and get her in. All of those things make being in a “normal” parking space a little extra hard. So for safety’s sake, we got the permit. Already it has been worth it. We could have fought against it, making do in the regular spaces, staying in denial and waiting until she’s no longer walking (if that does happen–it’s an unknown). But we’re embracing it, and we’re using whatever we can to make life with Rett just a little bit easier.

It means… spending a couple of hours sorting through apps and games on her new tablet to find the ones that would be easiest for her to use, would encourage hand-eye coordination, and would–hopefully–help to establish some kind of communication. It means finding a way to make learning more enjoyable, and communication more accessible. Understanding her needs and interests, and using that knowledge to enhance her day-to-day experiences. Knowing her limitations and finding ways to work around them, rather than trying to push her into using something that isn’t realistic for her. In speech therapy, we aren’t trying to get her to talk; we’re trying to find the right alternative communication device or app. We haven’t “given up”; we’re just recognizing what she can and can’t do.

We embrace her disability, but that doesn’t mean we think it’s wonderful. We just know that life will be much easier–for her and for us–if we accept it and make those little adjustments as we go. Special needs parenting is never easy, but there are ways to make life more livable. If we can focus on what we can do, and take advantage of every resource available to us, that life will include more achievement, richness, and joy.

 

Our Many Colored Days

There’s a book that my oldest daughter enjoys. It’s called “My Many Colored Days” by Dr. Seuss, but this is not a typical “Dr. Seuss” book. The book goes through different colors, connecting each color with both an animal and an emotion. For example, one page reads, “On bright blue days I flap my wings,” (showing a drawing of a blue bird) “Some days, of course, feel sort of brown. Then I feel slow and low, low down” (with an illustration of a bear in a cave). It was clearly intended to teach children to recognize their emotions, and also learn colors and animals while they’re at it. When I think of how I feel about Rett Syndrome, this book sums it up.

Some days, we are happy and hopeful, seeing progress Anna has made in therapy, or listening to her laugh incessantly over tiny, silly things. Those days are bright yellow and green, giving us the notion that perhaps we really can do this.

Some days, we are sad. A muddy, grayish day. Mourning the skills she once had; lamenting as I think about how I’ll never hear her say “Mama”, or “I love you.” Regretful that we didn’t notice the signs earlier, or pay closer attention. Going to friends’ birthday parties, or even just having a playdate, can bring feelings of isolation, and sadness upon realizing that friends’ children who are younger than her, have surpassed her abilities. Hearing a friend’s child–a year, or even two years, younger than Anna–speaking in full sentences, while all she can do is grunt? That cuts to the heart.

Some days, we find relief. We have a good day; we are blessed by friends or family; we have a time of rest. When she is content, we are content. When we can go out and do things, without an incident, that’s a breath of fresh air. When a day goes smoothly, we rest in it. We savor it. Those days are aqua colored. Like clear waters at a pristine beach.

Some days, we feel guilty for not doing enough for her (what is enough?), and for staying in denial about her regression for so long. Guilt over snapping at her when I’m frustrated or tired, not giving her my full attention when she needs me, or not giving Leah the attention she needs, because we are giving Anna attention. Those days are black; dense with fear.

Some days, I feel just plain tired, like a misty, purplish blue, like an old bruise. We go through the fog not by clarity of sight, but simply by force of habit. Not only is my youngest keeping me up most the night, but then early in the morning, we have school, therapy, and other activities. But there is emotional tiredness, too. I frequently feel drained–or paralyzed. Some days, just feeding them and keeping them safe is all I can manage.

Some days, I feel frustrated. Even angry. On those fire-red days, I hate Rett Syndrome. Hate it. When something is wrong and she can’t tell us what it is. When I see the longing in her eyes, wanting to communicate, or to hold something, and she just… can’t. Sometimes, I’m even frustrated with her, even though I know it’s not her fault. But I’m still frustrated that plans are put on hold because she’s too sleepy. Or that she’s doing her “pterodactyl screech” in the middle of the library. Or that she’s stopped walking in the middle of the parking lot, because she just can’t go any further. Or that I’m still changing her diapers. Or that she threw food all over the kitchen at mealtime (and squished it into her hair).

And amidst the whirlwind of emotions, I have to stop. I look at Anna, and I have to chastise myself. It’s not about me. It’s about her. She’s the one with Rett Syndrome. Imagine what she must be feeling.

She must be frustrated, and even angry. If you were trapped inside a body that didn’t do what you wanted it to do, and couldn’t communicate even the simplest of needs, wouldn’t you be angry? Her meltdowns and periods of sobbing may be confusing and inconvenient for me, but they must be the culmination of the pain and frustration of never being able to communicate your needs, wants, ideas, or feelings.

She is tired. I know this for a fact. How many four year olds do you know that still take a three hour afternoon nap? Even after taking an hour nap in the morning? Or how about falling asleep nearly every time she gets in the car? Or while she’s eating? She’s exhausted. And surely she, too, is emotionally and mentally drained. Wanting to communicate, to move a certain way–and not able to do so.

As I think about her falling asleep, I wonder–what does she dream? Is she running, playing, even talking? Is she soaring up high like an eagle, or snuggled someplace warm like a bear cub? Does she say funny things and have a lot of friends? Does she dance, sing, and paint? Is she free? We may never know, but I hope this is the case. I hope she finds relief in her slumber.

She might even feel guilty. Maybe she knows that we have to cancel plans when she has a hard day, or that we can’t go certain places with her. Or maybe she understands that her crying and screaming is frustrating to us. She may even realize that her sister desperately wants to play with her, but she can’t. And sometimes, she accidentally hits her brother and makes him cry; not because she is mean, or was even angry, but because she can’t control her arms.

I can see when she is relieved. When she’s swinging at the park, she’s released from the strain of gravity. When she smiles softly in the bathtub, I can see her letting go. I’m not sure exactly why she loves the water so much, but I can make some guesses. It could be that her muscles are relaxed in the warmth; or that her body feels light. It seems she moves a little more freely in water, and perhaps she feels more in control in that environment. Maybe she is released of pressure and tension. Or maybe it’s the muffling of sound while her ears are under water. It could even be as simple as her liking how her hair feels when it’s submerged. Whatever the case, she loves it, and she’s alleviated by it.

I know she feels sad. I don’t always know why, but she will cry and whine when she is sad. I try to comfort her, and sometimes I fail at the task. Sometimes she is beyond comforting. I cannot address the root of her sadness, because I don’t know where that root lies. So I hold her, kiss her, and rub her back. I only hope that I am enough to help her through the rough times.

But, oh! When she is happy, it is pure joy! Unadulterated, unsuppressed, complete and utter JOY. She laughs from her belly, and sometimes she’ can’t stop. We cannot help but laugh with her. We don’t always know why she’s laughing, but we go along with it. And when she looks–really looks–into our eyes, her bright blue ones shining back at us, we can see the happiness only she can possess. That delight that belongs only to those who are innocent. Her joy is contagious. It’s a shining star in the darkness. A glimmering jewel among jagged rocks.

She works hard, and we press her to keep working hard. And that joy is what keeps us going. It’s what gives us hope and the drive to persevere. It’s why we haven’t given up.

I know this post was full of a lot of downers and negativity. But sometimes we need to recognize and acknowledge the struggles so we can appreciate the victories. Sometimes we need to be in the dark so that the light shines brighter.

 

Knowing Brings Relief

It’s been a full month since my last post. Life has been busy, it’s true. But I also couldn’t quite grasp a firm topic to discuss. Sure, lots of news stories have come and gone in that time, but they’ve been talked about so much, and I felt that I wouldn’t be able to bring anything new to the table. So I put off writing for another day. Today is that day, I suppose. It’s quiet now (relatively). With Anna and Damien both sleeping, and Leah occupied with watching a movie, I have free hands and a little room in my brain to formulate a new post.

I suppose I should simply discuss the only thing that seems worth discussing right now.

Last Thursday, Anna received an official, on-paper, clinical diagnosis of Rett Syndrome.

According to websites and parent forums, it’s typical for parents to be grieved after the diagnosis. But I’ll be honest–I’m relieved.

To be clear, I’m not relieved at the prognosis. The possibility of her losing the ability to walk, to eat, to use her hands… The likelihood that we may never hear her speak a single word… Those are not things that bring relief. But it’s the knowing.

There’s a part of the book, “One Thousand Gifts” by Ann Voskamp (one of my new favorites!), where Ann and her husband are facing a mysterious illness in their pigs. It sums up beautifully how I feel about this diagnosis:

I point to the screen, to that name too long to pronounce. “If that’s really what’s going on out in the barn, are you OK?”
I can feel his relief, the way it drains into me.
“Yes… and no. I don’t like what it is, or that it looks like it’s nearly impossible to eradicate, but you know what?”
I turn to find his eyes, the way he and I meet, touch. His hands around me tighten, us melded in hope.
“I’m strangely happy.”
It’s true. No furrow plows across his brow. His maritime eyes lay calm.
“God’s good. Just naming it… Just naming it. When you don’t have the name for something, you’re haunted by shadows. It ages you.”
I press my lined forehead onto his.
“But when you can name something…”

We’ve “known” for a while that it was Rett. After the doctor mentioned it at an appointment in January, I did some research online and every description I found looked like a perfect descriptor for Anna. At first I did grieve. The future was too heavy to imagine. With “just” autism, there is some hope for improvement. But with Rett, there is only decline. Things do not get easier; they get much, much harder.

As time went on–as we waited for blood test results and had more testing done (one of which was an EEG in which we discovered she was having seizures, so now she is on anti-seizure medication–and has been improving in connection and awareness since then!)–the diagnosis of Rett was no longer a “possibility”, but a fact. Before long, we couldn’t see anything but Rett in her. And so it was a slow process, four months long before we actually received the diagnosis, which allowed us to drink it in slowly.

While it was yet undiagnosed, we were able to hold onto that last bit of hope that maybe it wasn’t Rett–maybe it was just severe autism. And who would’ve thought that severe autism would be the less debilitating condition? I never would’ve imagined saying such a thing. But it’s true. There is more wide-spread knowledge of autism, even severe and low-functioning autism. There are more community supports, more parents who can relate, more resources available. But Rett? Not so much.

Still, just knowing is a relief. Having that name to look at, to research, to champion for, to share with others; having a more specific course of action laid out, despite the numerous possibilities and wide range of outcomes within that singular diagnosis.

But now we know what to expect. Sometimes losing hope gives another kind of comfort. Giving up the anxiety of “Will she ever be potty trained?” and exchanging it for, “I’m glad she’s still eating solid food.” Giving up all notions of a “normal” future will allow us to focus on the here-and-now; to rejoice in the smaller accomplishments, because now those small things, are really very big. Rather than grieving her lack of words, I can be even more excited when she uses other means to connect–her eyes, her cuddles, her vocalizations. Now that we have been warned what the future may hold, we can enter into it more gracefully, and slow down to enjoy each moment leading up to those harder things.

Learning about Rett will be a whole new journey. I have a 500+ page handbook on the subject, given to us by the Rett specialist who confirmed her diagnosis. I’ve barely started; it’s not the type of book you rush through. It has such a wide range of information–scientific studies, histories, personal stories, advice from experts–everything you can imagine on the subject. And I’m determined to learn everything I can about it, so I can help Anna as much as I possibly can.

I may have actually run out of words on that subject for now. I’m sure it will be revisited time and again in the future. It’s our new life, now, after all.

Below, I’m going to list my favorite websites for Rett Syndrome. I encourage you to check them out and learn a bit about the condition. Most people aren’t aware it even exists, so you’ll be ahead of the game. And the more people who know, the more support and understanding we’ll gain from the community at large.

http://www.rettsyndrome.org

http://www.curerett.org

http://www.girlpower2cure.org

http://www.nwrettsyndrome.org

http://www.graceforrett.com

Awareness vs. Acceptance

So it’s Autism Awareness Month. In case you weren’t aware. (See what I did there?)

I think everyone is now aware of autism. To the point of panicking and coming up with a dozen different theories on both causes and cures. And maybe some of those are true. I won’t pretend to be an expert–I’ve only been at this “Autism Mom” thing for about nine months. And though I now know it much better than I had before Anna received her diagnosis, I was still aware of it.

If you didn’t know, there is actually quite a bit of division amongst the autism parents and autism community at large (encompassing autistic individuals, parents of autistic children, therapists and specialists, teachers, etc.) in regards to awareness. There are actually quite a few “counter-campaigns” against “Autism Awareness Month”.

There’s “Tone it Down Taupe”, the source of which I can’t seem to find. However, if you just google it, you’ll find all kinds of individual pages that are sporting their taupe ribbons to spread their message. What message, you ask? Well, according to one blog, that message is: “It is taupe (or tan. Or beige. A non offensive, non obtrusive color) to symbolize the toned-down sensory and emotional experiences of those lacking autism.”

And then there’s “Autism Acceptance Month“, put on by the Autistic Self Advocacy Network (ASAN), which aims to refocus the energy spent on finding a cure, on building support and improving the quality of life for those experiencing autism. The important thing to note is that ASAN is an organization founded by and run by autistic adults, meaning there is no doubt about their goals and whether or not they know what is important to the autism community.

Both of these campaigns are opposed to the fear-based, panic-inducing multi-million dollar fundraising campaign put on by Autism Speaks (AS), which was the organization which declared April to be Autism Awareness Month. Their current pitch is called “Light it Up Blue”. They’ve had that slogan for a few years now, from what I understand, and there is quite a bit of controversy over the whole thing.

I’ve heard totally different sides of it, and honestly I’m slightly ambivalent as to where I stand in regards to Autism Speaks.

ASAN and other self-advocating organizations insist that AS has made too much of a profit, and does nothing to actually serve the autism community. According to these autistic adults, and many parents of autistic children, AS has used a double-edged marketing ploy to “raise awareness”. First, there is the “everyone gets freaked out” part of the campaign, wherein they talk about the statistics (which I’ve already discussed in an earlier post), and say that autism has “stolen our children”, or that it’s an “epidemic”.

Is autism more frequent? Perhaps, and I don’t want to get into that debate at the moment. But as a lover of words (logophile?) I have to object to calling it an “epidemic”. An epidemic infers that there is a contagious disease–a singular pathogen–that is spreading from one person to another. This is simply untrue of how autism works. It has many different causes, and it looks different in each person (that’s why it’s a spectrum!). It cannot, therefore, be called an epidemic.

But on with the point…

From some parents of high-functioning autistic children (including PDD-NOS and Asperger’s), I’ve heard that they have not felt represented–that there’s too much tragedy and terror in their marketing, and not enough of the positive side of autism.

And yet, on the other end of the spectrum (pun absolutely intended), you have the parents and guardians/caretakers of low-functioning autistic individuals, who also feel that their child’s autism is not being represented, because of all the fuss about autism creating geniuses and all of the inspirational stories of “recovery”. We are one of those families, whose autism looks a lot more complicated and intensive than HFA/Asperger’s looks like.

So which is it? Are they too panic-inducing, or too rainbow-and-unicorn?

Well, it would seem that AS is not really serving anyone.

But with such a complex disorder, with so much variety, it’s nearly impossible to represent everyone. But what AS could do, which they haven’t done, is provide actual support for autism families, regardless of the level of functioning. Sure, there are some “resources”, but it’s just a bunch of literature, which families already have access to through their other care providers. I’ve looked all over their website, and I can’t find a single thing that is provided for autism families that wasn’t already provided to us through our local resources. For an organization that is supposed to be the “big kahuna” when it comes to autism advocacy, they don’t have much to offer.

Most of their money goes towards research, research, and more research. Oh, and marketing for more money. For research. They are intent on finding a cure, though autistic adults have insisted that there is no cure, because it’s not a disease. I’m inclined to agree with them on this point.

I believe I’m getting slightly off-track, but I wanted to give that foundation before I explain my predicament. You see, I am still torn on whether or not to participate in Autism Awareness Month, or in what fashion I would do so.

Awareness can be good, because it can bring about more understanding and patience with autistic children in public, and it can encourage people in positions of power (like school board members, heads of health insurance companies, politicians) to enact measures that will help families with autism to get the services they need. Unfortunately, most of the “awareness” we see these days is all about fear, panic, and finger-pointing.

Acceptance is also good, because it doesn’t try to “cure” autism, but meets the autistic person (at any age) where they are, and simply helps them to create their best life, whatever that means for them. Acceptance is loving the families and providing practical support for their daily lives. No fear, panic, or finger-pointing. But acceptance also tends to create this rose-colored version of autism that doesn’t apply to all families, particularly those with low-functioning autistic individuals.

So acceptance removes the “dirty word” stigma and promotes more love, understanding, and support for individuals with autism. But awareness reminds us of the reality of a total lack of speech, of changing a nine year old’s diaper, of the constant mess, of wandering away and disappearing, of sleepless nights, and those screaming fits where all you can do is contain them and try to stay calm yourself. And our life? It’s somewhere in the middle of all that. We’re somewhere between awareness and acceptance. Between chaos and unending love.

So I’ll change my Facebook profile photo and cover photo, and my Babycenter avatar. I’ll “Share” whatever great articles or memes come across my news feed. I’ll rally with those who want to rally, sigh with those who want to vent, and create my own “Autism Awareness and Acceptance Month”, where I can nod to the hardships while still smiling fondly at my Sweet Girl, who loves to cuddle, sings without words, dances despite her motor skill difficulties, and adores animals. Because really, isn’t that what life with autism is? Some days you are at ease, comfortable, peaceful. But the next day could be torn apart by an unexpected screaming fit, or a common illness like a cold or flu, which becomes so much harder because they can’t tell you where it hurts. One day is laughing in the park; the next is crying in the middle of the night. It’s all of these things, and families need both awareness and acceptance–the fight as well as the embrace.

 

 

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