We started the day drained after a night of little to no sleep because Sage was up crying most of the night. But, apart from that it was a pretty typical Wednesday. We had therapy for Sage in the morning, so Bryan didn’t go into work right away. Our family resources coordinator had just left when Bryan got a call. The whole time he was on the call I kept trying to figure out who it was he was talking to and what about, but I couldn’t – because this would have never been on my radar.

The call was from the dermatologists office and they were calling with the pathology report from a tumor they had removed from my husbands thumb the week before. The dermatologist had said from looking at it that it was a pyogenic granuloma and not cancerous. They told my husband on that call that the pathology report showed he had melanoma.

That first day we walked around in a daze. Bryan went to work. My mother-in-law took Thaddeus for a few hours and I was left alone with Sage. I felt a little bit like I didn’t know what to focus on. I was so grateful that my two year old was gone and I didn’t have to entertain him. I started to look up melanoma online. Bad idea. My mind couldn’t get past phrases like “most deadly form of skin cancer”. I remember sort of just staring blankly at the screen thinking, “that can’t be right.” Bryan is young, fit and healthy. I started to shake uncontrollably, the way I did after both my children were born. I was in shock. I knew I couldn’t keep reading, but wasn’t sure really what to do with myself. Then as if spoken I thought, “what were you going to do today before all this happened?” “clean.” “then do that.”

So I picked up, and I vacuumed, and I dusted, and I cleaned the bathroom and I scrubbed the floors. And as I did the numb shock subsided. I realized something right then, something I want to remember…

Sometimes when life throws something at you that you truly don’t think you can handle the best thing to do is to just do the step that already lay in front of you. Do the mundane, the ordinary, scrub the floors. I realized that there wasn’t anything I could do in that moment that would change the twist that had just been thrown in my road. I couldn’t make the melanoma go away, I couldn’t control the future, all I could do was the task that lay before me and that task was scrubbing the floors. And you know what? It helped.

Bryan came home early and the rest of the day was spend with a sort of sweet dazed preciousness. There were cuddles and tears and lots and lots of playing together as a family.

A little more than a week has gone by since then. We now know that the recommendation is for Bryan to have the top half of his thumb amputated. The oncologist is running a blood test now and wants to schedule a PET scan, an MRI, and a lymph node biopsy. The priority now is to make sure all of the irregular cells are removed and find out if it has spread and if so how far.

After the initial shock we have of course experienced a roller coaster of feelings. But, overall we are trying to stay positive and not become ruled by the fear or the what-ifs. We believe that we can and will fight this. This is not going to be an end of a road it is just a new twist. This road we are now traveling down is a road leading to life – a fuller, deeper life then we could have experienced without this twist. That is what I believe today and that is what I am choosing to focus on going forward.

Rejoicing in the journey,

Bethany Stedman

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Last Friday we were able to see the neurologist and get the results from my daughter’s MRI.

The first thing people asked afterwards was, “How did it go?” which when you think about it is really a difficult question to answer in a situation like this. I sort of wish our family could have all been at the appointment and talked to the neurologist themselves.

In some ways I feel like some of the reactions we felt from others were more the reactions the neurologist expected from us. He kept asking how we were and at one point jokingly called us stoic. I didn’t feel stoic. I just felt calm and at peace.

There was really nothing he told us that was a surprise for us. We know Sage. We knew something wasn’t normal. We’d seen the print out from the MRI and we could understand enough to know that something was indeed wrong. We knew that she was already showing developmental delays mostly in the area of motor development. And we knew she qualified for and would benefit from early intervention services.

So how was the appointment? Well, it was confirmation of all the things we were already piecing together about Sage.

Here’s how it went…

We talked about what her brain looks like.

Sage has what they call bilateral perisylvian polymicrogyria. Which means that the areas on the sides of her brain (both sides) didn’t develop the way that they should have. You know when you see a drawing of the brain and there’s all those folds and creases, well, Sage’s brain has smaller more frequent folds on the sides. Along with some volume lose of both grey matter and white mater.

We talked about what this might mean for her future.

Here’s where I feel the appointment just confirmed things we already knew. Basically the doctor told us that she will have developmental delays and that they will most likely affect her motor skills and speech. But, he was also very clear that with babies we can never really tell predictively the exact track of future development because at this early age the brain is still very adaptable.

When a specific area of the brain is damaged in an adult they can predict pretty accurately what functionality will be affected. But, that’s not as true for babies. Their brains are still developing and functionality isn’t as hard wired to specific areas as it is in adults.

Basically, he could tell us a range of functionality by looking at the literature and telling us the range that other children with polymicrogyria function in. The doctor was very honest in telling us that because polymicrogyria is pretty rare and we got a last minute earlier appointment he hadn’t had a chance to thoroughly review all of the literature. So he said we could call him later this week to find out more.

The most important thing for us to realize at this point was that each baby is unique and only Sage will be able to tell us what she’s capable of and what she’s not.

We also talked about how because of this diagnosis Sage is at an increased risk for seizures. She may never have them, but there is an increased risk that we should be aware of. Bryan and I had some questions at this point since we had no experience with seizures. We talked about what to look for, and what to do if we notice something. We also talked about why seizures are problematic and what they do to treat them should she develop them some day in the future.

We talked about the possible causes of polymicrogyria.

Part of the reason for doing the MRI was that sometimes it can clue you in as to the cause of the problem. In Sage’s case it didn’t really.

Basically polymicrogyria can be caused by an injury (beyond my toddler crawling all over me, which the neurologists said would not have been the problem, I had no known injuries), or an infection (the TORCH blood test checks for the infections that usually cause this and Sage had that test already and the results didn’t show any signs of her having had those infections), or genetics.

Before doing the MRI we were told that Sage’s condition was most likely a genetic problem, after the MRI we are in the same position of continuing to assume that this is most likely a genetic issue for Sage.

We talked about what our next steps should be.

The doctor first recommended a swallow test since I had mentioned that Sage seems to choke a lot and since perisylvian polymicrogyria can effect the muscles of the mouth and the motor skills involved in swallowing and talking.

I am very curious to hear the results of the swallow test since I have always felt like Sage had some trouble nursing, but any time I’d asked anyone about it they looked at her latch and said her latch was great and assured me she was nursing fine. It was a little affirming to have someone say that her swallowing and the muscle tone in her mouth may be the issue.

He also recommended a hearing and vision test, since she hadn’t had a newborn hearing test. He said he wasn’t aware of perisylvian polymicrogyria being particularly connected with hearing or vision problems, but whenever there’s a problem with the brain there’s an increased chance of those problems. So, we will do both of these tests soon.

He also recommended that we see a geneticist. Which was reaffirming since we had already scheduled an appointment with Dr. William Dobyns, a geneticist and neurologist who is the leading expert on microcephaly in the nation.

We also talked through the pro’s and con’s of genetic testing. As much as I hate the thought of putting my sweet girl through another blood test, we do feel like we need to do the genetic testing. And we plan on doing it before we see Dobyns since we know how long it can take to get an appointment with him and we want to be able to give him as much information as possible.

The neurologist also confirmed for us again that early intervention was the best possible thing for us to do for Sage. She will definitely need the support and help of occupational therapists and speech therapists and others who have experience working with children with developmental delays.

Overall, the appointment went well. Not really better than we had anticipated, but also not worse than we had anticipated. It simply confirmed things.

I’ve been thankful that we’ve had time to ease into our new reality. I’ve even felt grateful that there has been such long gaps between doctors appointments. It’s been frustrating at times, but I think it’s also given us time to process and ease into each deeper diagnosis.

I am anxious for our appointment with Dobyns in July, but I am also glad that we have a few months before that appointment. There’s a lot Sage can tell us about who she is and who she’s going to be in those months.

I think I’m slowly coming to peace now with the fact that the doctors aren’t going to be able to take this away and “fix” my sweet Sage. There’s nothing to fix. She is who she is and who she’ll always be. The doctors can’t just give her a pill or do surgery and then have everything be “normal”. This isn’t something treatable. It isn’t something that’s going to just go away. It isn’t something she’s going to outgrow.

Last week I read the essay “Welcome to Holland” by Emily Kingsley. It was a really helpful picture for me. In it Kingsley writes about what it’s like to have a child with special needs. She says,

“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.”

I think even though I was doing pretty well with Sage’s diagnosis I still in the back of my head thought “well, yes, I’m in Holland, but I’m not staying in Holland. I’m just passing through.” But, the past week or two I’ve started to come to terms with the fact that, at least for my little family, there are no flights leaving Holland. This is our reality. This is who Sage is and it is now who I am as well. I am the mother of a special needs child. It is and will be my reality. God has brought us to Holland and it is in Holland that he will come to us and walk with us.

All that is not to say that there aren’t things we can do. Yes, there is nothing we can do that will just take this away from Sage, but there are things we can do that can help her to reach her full potential. There are opportunities we can give her that can give her the best possible advantage. And so, we’ll keep doing therapy with her, and looking into different types of therapies. And we’ll give her healthy bouts of stimulation, and play Lots of music for her. And I’ll breastfeed long term and make sure she gets lots of healthy fats in her diet. And we’ll take each day and each year as they come, listening and learning who Sage is as we go. And we’ll see where she takes us.

And isn’t that all any of us can do for our children? Listen and learn and see where they take us?

Rejoicing in the journey,

Bethany Stedman

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I’ve been realizing more and more lately the importance of clear communication. And the importance of asking for what you want. People can’t read your mind.

My two year old often assumes that I can read his mind and then gets terribly upset when I do something that he didn’t want me to do or don’t do something that he did want me to do. He screams and cries and acts as if I have horribly offended him and somehow violated his rights. I’m trying to teach him that the only way to truly have our desires met is to clearly communicate them. You have to ask.

I get frustrated and upset with my toddler’s outbursts over un-communicated desires, but I’m realizing that often I act exactly like my toddler. I want Bryan to do something but don’t tell him (or at least don’t communicate clearly in a way he understands) and then I get upset. I feel frustrated when my in-laws give Thad a nap and it makes it difficult to put him to bed, but I never told then not to. I feel sad when I feel like my birthday is just another day, even when I never communicated that I wanted it to feel differently. My reasons for not communicating may seem more understandable than my toddlers – I want to avoid facing the insecurities that the conversation may bring up. Understandable, maybe, but in truth no different from my toddler. And really my lack of honest communication doesn’t get me anywhere.

So, I’m trying to be better about communicating more clearly what I want upfront. One step I’m taking towards that is communicating what I want for my birthday this year. In a strange way communicating about my birthday seems even harder than other steps towards communication that I’ve taken.

Birthdays as an adult have always felt a little awkward for me. 

I don’t really like having all the spotlight on me. But, when I’m honest of course I do want a day to be celebrated, recognized…seen. We all want that don’t we? We want to be acknowledged and celebrated every now and then. Even those of us who feel embarrassed and uncomfortable by the attention, still want it every once in a while.

When you’re a child birthdays give you that attention and you don’t have to ask for it. Maybe that’s the main reason why birthdays feel so awkward to me as an adult. If you want to be celebrated you have to ask for it. You have to plan your own party and invite people to come. Or ask someone to do it for you. For me this always stirs up all kinds of insecurities and uncertainties and plenty of negative self talk…

“…don’t bother people. It’s just a birthday, it’s not really important. You didn’t do anything. Just lived another year. Everyone does that. People are busy. Even if they like you, you shouldn’t ask too much of them. Just stay in the shadows, And don’t bother people. It’s not that important. You’re not that important…”

Yuck. Don’t you hate negative self talk? It just feels…yuck. And I’m really pretty good at it. Blah, blah, blah.

This year I’m not going to listen though (…Or at least I’m gonna try not to). I’m gonna plan myself a party. I feel a little more freedom to ask to be celebrated this year because it’s a bigger birthday and a little more culturally acceptable to make a big deal about it.

July 7th, 2012 will be my 30th birthday.

Thirty. It feels both significant and insignificant all at once. I have honestly looked forward to turning thirty for pretty much all of my twenties. I know I’m an odd duck. But, something about turning 30 sort of captivated me.

It all started when I was in college. I remember having a conversation with a friend around the time she turned thirty in which she talked about how turning thirty brought her a new acceptance and appreciation for herself and her body. That was when I first started looking forward to thirty, although later I started to think maybe her deeper acceptance of her appearance had less to do with her turning 30 and more to do with other things (then again I now wonder if there was some truth in connecting this to turning thirty).

Through that conversation I somehow started to create this picture in my head that I’d have life figured out by thirty, or at least know who I am and be really comfortable in my own skin by then. The degree to which I secretly thought of 30 as this end-all-be-all age seems sort of funny now, but there it was, my love affair with 30 had begun.

When we were in Prague I got to celebrate with a number of friends as they hit this milestone. We also had some dear friends there who had already passed this hurdle. All of that took some of the mystery, fear, and the common, “30 is so old” felling out of turning thirty. My desire to be thirty grew. I wanted to be part of the club.

But during that time thirty also became a little demystified and lost a little of it’s magic. I remember one dear friend turning thirty and associating every self realization, every good bit of growth in her life with turning thirty. Statements were commonly started or followed with “maybe it’s because I’m turning thirty”, or “since turning thirty”. I remember talking with her about how excluded her statements made me feel and about how I heard in them that anyone who isn’t thirty couldn’t have the sort of growth or self awareness that she now had as a 30 year old. I somehow felt threatened and put down by her connecting positive growth with an age. I think largely I was just jealous. Jealous of an age – yeah, I am an odd duck.

I became disillusioned with turning thirty. My desire to turn thirty became even stronger (so that I wouldn’t feel like the slightly excluded young one in the group), but I also started to feel like thirty wasn’t magically gonna cause me to grow leaps and bounds, as I had previously thought. I wasn’t going to suddenly in the course of one year become a more enlightened, self-aware, godly person just because of the number of candles on the birthday cake. I wasn’t gonna have life figured out at thirty.

But, here’s the thing I realize now as I get closer to thirty myself, the truth is somewhere in the middle. Yes, 30 is just another birthday and growth comes primarily through active intentionality, not just the year on your birth certificate. But, thirty is also not just another birthday, growth does come through age and there’s a reason that people make a big deal about thirty. It is a big deal. Something does happen around thirty that is a little bit unexplainable. The things that concerned you in your twenties don’t concern you as much anymore.  Maybe for you it happens at 29, or maybe not till 32, but around this time something does seem to change for most people. And I do think that it does have to do with a deepened acceptance of yourself.

It is a big landmark and it feels important to celebrate it and to ask others to celebrate it with me. So, that’s what I’m going to do. I’m gonna take a step out of my comfort zone and away from my insecurities and start planning.

Rejoicing in the journey,

Bethany Stedman

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My daughter was diagnosed with microcephaly three months ago at her two month well check. Ever since then we have felt extremely unsure about what this would mean for her and for us and what we could do to help her. This week I feel like we began to get some answers, not answers about the future (diagnosis’s, predictions, etc), but answers about the present. We began to get the support that will help us know how to best help our daughter grow and flourish on a day-to-day basis. And (as we’re slowly realizing) those are the answers that really matter.

The whole world of early intervention and special needs services is completely foreign to me and I felt so nervous and unsure as we took our first floundering steps into this new realm. But, once we actually met with our Family Resource Coordinator I felt so relieved and encouraged and grateful that we had been directed to get this help now while Sage is still so young.

The organization that offers early intervention services for birth to age three in our area is called The Little Red School House. They send an occupational therapist to evaluate Sage and meet with us last week. Because we already had a diagnosis of microcephaly Sage automatically qualified for the program and from what I understand the evaluation was more for determining where she’s at developmentally. The whole thing was so much more comfortable and encouraging than I had anticipated. As we had been warned, there was a lot of paper work to do, but most of the time was spend just talking about Sage.

I really liked the approach that The Little Red School House takes to equip and support the parents, believing that the parents know the child best and are in the best position to help the child. I also liked that they don’t want to inundate the families with tons of appointments and lots of different specialists, instead they have one person (our Family Resources Coordinator) who will meet with us regularly (as regularly as we need). And then if their are questions or problems that are better suited for a specific specialist she can take those to her team of specialists at the school house and have them instruct her or if necessary bring them in to work with Sage. I liked that approach a lot, it seemed much less invasive or overwhelming.

I also felt a huge sigh of relief to learn that our FRC is able to offer some alternative remedies and has not only been working in occupational therapy for about thirty years, but also studied massage and acupressure. She said not all of her families want to utilize alternative options, but she wanted us to know about some of the different alternative remedies she could offer. Obviously I am very interested in alternative medicine and some of the therapies she talked about sounded fascinating. For example there was one she talked about where they use a tuning fork and different pitches that corespondent to different meridian lines (like in acupuncture – but without the needles), can’t remember what it’s called though.

Anyway, the whole experience was really positive and encouraging and I’m really looking forward to the support that this organization will be able to offer my sweet little girl over the next three years. Our next meeting will be next week and it’s when we will create our Individualized Family Service Plan (IFSP), which from what I understand is essentially a document stating our desire for Sage over the coming year and a plan to achieve it and what services will help us get there.

I’m excited to start this journey into early intervention. It feels good to know that there are things we can do and tools we can utilize that could help Sage. And it feels good that we won’t have to go at it alone. Someone will guide us through the process from here and help lead us to the best resources for the specific special needs of our baby.

I’m feeling very grateful for these things today.

Rejoicing in the journey,

Bethany Stedman

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I told Bryan recently that I feel like we are finally starting to come into our own. I feel like we are settling into who we are at this moment in our lives. I keep thinking of this quote from Carl Rogers,

“Becoming a Person means that the individual moves toward being, knowingly and acceptingly, the process which he inwardly and actually is… He is not trying to be more than he is, with the attendant feelings of insecurity or bombastic defensiveness. He is not trying to be less than he is, with the attendant feelings of guilt or self-depreciation. He is increasingly listening to the deepest recesses of his psychological and emotional being, and finds himself increasingly willing to be, with greater accuracy and depth, that self which he most truly is.”

I feel like we have sort of been experiencing that a little bit. I feel like we have been settling into the selves that we most truly are.

This feeling of settling into ourselves has, for me, also extended to my appearance. A settling into my own skin, you could say. Recently when I look in the mirror I have had the shocking and refreshing experience of thinking, “I look like who I am.” I don’t think I look like my ideal self, or the cultural ideal that I carry around. But, I do feel like what I see in the mirror fits well with the rolls and personas I actually am at this moment in time. I look in the mirror and I see an almost thirty year old mom of two. I see a wife who’s been happily married long enough to know that no marriage is completely happy or secure and long enough to be more secure than ever in her relationship with her husband. I see stretch marks and an untoned belly and instead if thinking “ugh, I hate myself”, I think, “yeah, I am a mom and that fits.”

I say that this has been a shocking and refreshing experience because it’s an experience I’ve never had before. Ive never liked what I saw in the mirror, but more than that I didn’t feel like it fit. You see I’ve often felt like I didn’t look like myself when I looked in the mirror, didn’t look like I imagined myself looking, didn’t look like my age (once when I was 23 years old a flight attendant thought I was under 16 and told me I couldn’t sit in the emergency row – true story), didn’t look like the person I wanted to be or felt liked I was deep down.

I think some of this was due to a lack of deep acceptance for the person I am, as well as holding onto identities that were not really me, or at least not yet me, or not fully me. My whole life, when I’ve looked in the mirror I’ve always been a little disappointed in what I saw. This was, of course, partly because I faced the same media messages about beauty and femininity that all women face. But, I think it was also partly because my image of myself, or, at least, the self I desired to be, didn’t match up with the self that I actually was in that particular moment. I always felt older or younger than I looked. I always felt that the image in the mirror didn’t fit the roles and personas I held for myself in my head. Until recently.

For the first time in my life I feel like I’m settling into my own skin. I feel like I know who I am right now and, for the most part, I have a deep peace about the roles I am playing, the place I am at in life, and the direction I am heading. For the first time in my life questions like “who am I?” “what’s my purpose or role in life?” “what am I suppose to be doing with my life?” aren’t in the forefront of my mind and aren’t shaping my identity. Phew! What a relief!

It feels good to be in this place. It feels open and spacious and exciting. We are settling down, but we are not settling into mediocrity, we are settling into ourselves.

Rejoicing in the journey -
Bethany Stedman

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I hadn’t realized how nervous I was feeling about Sage’s MRI until I woke up in the night to nurse her and couldn’t get back to sleep afterwards. I just stared at her as she slept beside me. I knew an MRI was the next step we needed to take, but the thought of my baby under general anesthesia of course made me nervous.

In the morning before we left I was a flurry of nervous mommy energy, darting this way and that as I tried to get us out the door. I felt so grateful that my in-laws had taken Thad the night before (his first ever sleep over) and I didn’t have to deal with a two year old along with everything else. There have been so many moments lately when I send up silent thoughts of gratitude that we now live close to family for this season of our lives.

And then we arrived at Seattle Children’s.

And again I said a quick prayer of gratitude that we live where we do. We always had pretty positive experiences with medical things in Prague, and felt well taken care of the few times we went to Prague hospitals for various reasons. But, there is something unimaginably calming when you walk nervously into a hospital building and are quickly greeted by people and signs that speak your language. There was no guess work, there was no translating. Sigh of relief.
But, Seattle children’s wasn’t just a good hospital experience because it was in English. I felt like it was a good hospital experience compared with others in the states as well. Everything was very well organized and structured, the building was clean and even beautiful in places. You could tell things had been well thought through. And well thought though with kids in mind. For example, this was the fun, inviting playground outside our window.

Most of all though, everyone was just so friendly. People smiled and greeted us in the halls and asked if we needed help finding anything (that never happened in Prague hospitals). The doctors working with us really wanted to put us at ease. The anesthesiologist talked with us for quite a while, answering our questions, explaining what they would do, and even sharing stories about his own kids to help put us at ease. They were all very understanding and helpful.

When it came time they brought us and Sage to a prep area. We were able to hold her hand and be with her as they put her under. It was amazing to me how quickly she fell asleep. She looked so peaceful and still. We both gave her a kiss and then went up to Starbucks to wait.

We got back to our room about forty minutes after we left her and waited for them to bring her back in, which wasn’t very long. When she got back she had a breathing tube in her nose. They had her hooked up to a machine to monitor her heart rate and all that. They took her temperature and did a heel prick to check her blood sugar. Everything looked good. She looked so small alone in the little bed. She shivered, we tucked the blanket closer around her. She looked beautiful.

They told us that as soon as she woke up we could hold her and I could nurse her. We waited. They said she should wake up soon. We waited. An hour went by. We waited. That period of waiting for her to wake up was probably the hardest for me. I was glad for the equipment monitoring her and that the doctors regularly checked on her. Eventually she woke up and was starving. We cuddled and nursed.

They wanted to monitor her till 1pm. So we sat and read and cuddled and nursed. Apart from not being completely comfortable those few hours felt a little like a vacation to me. I didn’t have to do dishes, or laundry, or entertain a toddler, or listen to “mommy!mommy!” being screamed at me. Instead I got to just cuddle with my baby and talk and read with my husband for two hours. That part of the day was really nice.

Really the whole experience went as well as it possibly could have. The only negative was that we weren’t able to get an appointment with the neurologist until April. So, as of right now, we won’t know the results of the MRI until then. It’s a little frustrating to have gone through the stress of the MRI and know that there is information available about my daughters condition, but to still not know what that on formation is until April.

We were at least able to get a print out of the report and a cd of the MRI. We are thinking since we have the results we will try and see if we can get into a different neurologist to have someone interpret the results for us sooner. Or…anyone reading this know how to understand brain MRIs??

Whatever happens I find myself being continually reminded to take life one day at a time and to take this change in perceptions and expectations about my daughter one little piece of information at a time.

Rejoicing in the journey,
Bethany Stedman

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On Friday we braved the snow and slush and went to Seattle Children’s Hospital for another neurologist appointment for Sage. It was the first appointment we had about her microcephaly where the doctor didn’t say, “well, it could be nothing…” the neurologist we saw was thorough, asking a lot of questions and spending a lot of time looking at Sage, checking her reflexes and movements. He was straight forward and clear, telling us that he definitely saw enough to concern him. He told us that her head is now 2.8 deviations and that since her weight and height are on the growth chart it’s called disproportionate microcephaly. He recommended an MRI, saying that it was the best place to start figuring out what is going on and would give us some direction.

And then it happened… He told us he thought we should start having someone work with her and getting her some early therapy. Then he gave us a packet for “children with special needs” It made my head spin…”special needs” I knew Sage had microcephaly. I knew there was a chance that she would have some delays, and although I knew that label was a possibility I hadn’t really imagined it or truly thought of my child as having special needs until that moment.

It was like a reality check for me.

Suddenly I was reminded of when I took a class in college on Teaching Children with Special Needs. I remember feeling convinced during that class, with an irrational intuition, that I was going to have a child with special needs. And I remember begging God to not let that happen. Now I look at Sage and I can’t imagine asking God that I wouldn’t have her and can’t imagine having any other child. But, I still wish I knew for certain that she would be able to live a completely full functioning, “normal” life. But, I knew in that moment that wasn’t a certainty I could have. It may yet turn out that way, but there’s enough concerns that I have to come to terms with the fact that it might not.

I sat there a minute a little stunned still by the term “special needs”.

I couldn’t deny it anymore. I couldn’t justify the fact that she hasn’t met her milestones. I couldn’t keep holding on to the “well, it could be nothing” statements.

All along I have sort of known this was coming. I knew something wasn’t normal. Not in the way you know that two plus two equals four but with an intuitive sort of knowing.

When she was six weeks old I had a vivid dream within a dream where things kept threatening Sage and I had to fight for her and protect her. At the most vivid part I saw a number of wasps and hornets stinging Sage. I woke up still in the dream and preceded to dream that everything that had happened in the dream within a dream was happening in real life. It was after having this dream that I knew we had to schedule Sage’s first well visit with the pediatrician.

Maybe it’s bad for me to say it but I’m glad that we didn’t go in earlier, glad that we had those two months of ignorance, to just be with Sage, bond with her and get to know her. Being able to bond with her without the uncertainties of microcephaly hanging over our head was precious and I’m grateful for it.

But, as we sat with the neurologist I knew that the time of denial was over. It was time for a new season. Time to grow up and face my new reality. Time to do the research. Time to make the phone calls. Time to get the help. Time to do whatever we can to make sure that my special little girl can have the best life possible.

On February 2nd Sage will have an MRI of her head and spine. It will be under general anesthesia. If you pray, pray for her safety, pray that we get the best possible answers, pray that we are able to get the results back quickly (as it is right now our follow up with neurology isn’t able to be scheduled until April – we don’t want to wait that long) and pray that we have no problem getting the MRI pre-approved with our insurance.

Rejoicing in the journey,
Bethany Stedman

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I thought an easy way for me to document the year without dwelling on it too much would be to just compile a quick list of my most popular and favorite posts from the past year, but as I started to look at my analytics and thought back on the post I’ve written this year, well, it just didn’t seem like a really good gauge for what happened this year. Sure I wrote about leaving Prague, my sister-in-law getting married, birthing my second child at home, and deciding to move to Seattle. Those were big events from this year. But, what I couldn’t write about was the pain we carried for those we cared about who faced abuse, divorce, law suits, loss of income, foreclosures, miscarriages, cancer, and more. What I couldn’t put into words was the many goodbyes, the internal struggles with placelessness, loneliness, and the overhanging unknowns.

It felt like the ground was constantly shifting underneath us this year. Even as I watch the ground continue to shake for many I love I feel our footing stabilizing for the first time all year, perhaps for the first time in a few years. We’ve been tossing about in a sea of uncertainty and instability and we’ve finally reached solid land. I admit I had more than a little trepidation about where we were landing, but now that we’re here I feel like I can finally breath with my feet on firm soil.

I feel excited about 2012. I feel excited about the future in a way that I haven’t felt since our first year in Prague. I feel like Bryan and I are coming into our own for the first time feeling more at peace with who we are, what we are doing and where we are going than we ever have.

2012 may not look as exciting from the outside, we won’t be gallivanting around Europe, having dinner parties with people from all over the world. We won’t be living in an intentional community/farm like we had thought we might be. We wont be having a baby, starting a new career, or moving. We won’t be doing exciting things, and our actions this year probably won’t change the world. For the first time since we first got married our life will look prettying much the same as an other suburban family. But, I feel like it fits for now. It works for this stage of life. And at least right now, I’m excited about it.

I don’t think I have ever felt so anxious to say goodbye to a year as I am to say goodbye to 2011. Nor have I ever felt so anxious to start a year as I am to start 2012. So bring on the bubbly, let’s get this party started and ring this year in right!

Rejoicing in the journey,
Bethany Stedman

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You can expect to be given a home cooked meal made of real food…but, it’s very likely that there will be dirty dishes in the sink.
Expect to be eating largely organic, free-range, and grass fed as the case may be…but my toddler may sing ABCs during dinner, or reach clear across the table for bread, or roll his toy car on your back.
Expect that I will have good beer (usually local) that you can enjoy…but, you may be dragged to the playroom to play cars or asked to hold the baby for a bit.
Expect to be heartily welcomed…but, you may be asked to leave early because we aren’t afraid to kick people out because we’re tired.
Expect casual, comfortable and usually messy.
Expect laughter and conversation…but expect it to be interrupted by kids and seasoned with awkwardness now and then.

If I invite you to my home for dinner…

I expect you to play with my kids at least a little.
I expect you to make yourself at home – take your shoes off, help yourself to water, beer, raw milk or whatever other drinks are around, change the music if you want.
Excuse the mess and pardon the kids chaos.

I love having people over, i would usually much rather have people in my home than go to someone else’s, but I’m not a Martha Stewart type of host. When I invite someone over I invite them into a little bit of myself – I am messy, and unfinished and so is my home. I am not interested in facades or perfection, I can’t maintain them. I am interested in friendship, I am interested in building authentic community.

I will welcome you into my home on the day when my kids took extra long naps, and I am refreshed and prepared, and on the day when I only got two hours of sleep and didn’t have time to clean. I will welcome you in on the days when I’m energized and creative and the days when I just can’t snap out of my negative funk. Sometimes I might ask all the right questions and we’ll have a great conversation. Other times I might be tired and awkward and we may end up just watching an episode of Friends or Modern Family together.

So, come on over. Come in and take a seat. Breathe. Relax. I won’t pretend if you won’t. Welcome to the mess, the chaos, the unfinished work in progress. Welcome to my home.

Rejoicing in the journey,
Bethany Stedman

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Our pediatrician recommended blood tests and an MRI to try and determine the cause and extent of the issue. So far the blood work has all come back normal and we have yet to do the MRI. We’ve also seen a neurologist and been referred to a geneticist. As we’ve learned a little more though, it seems likely that we will never know a cause or, in advance, how it might effect her. It also seems likely that she will have some developmental delays of some sort. They could be mild delays or severe delays, they may show up right away or not for a while, and at this point it seems we have no way of knowing.

I honestly feel weird writing about it, since I don’t feel like we really know anything. All we really know is that she’s measuring at 2.4 deviations and that there’s a good chance she will have some developmental delays, although there’s also a chance she could grow up without any noticeable delays at all. We just don’t know.

In some ways I’ve been really thankful that we found this out right in the middle of a move, when there’s lots to do and not much opportunity to stop and think. The little research I’ve been able to do has made me realize that maybe its better for my psyche if I don’t do any at all. It’s hard to feel so helpless, though, and to live with this constant unknown.

I love my little girl so much. We bonded so much more quickly than I did with my son. I look at her and my heart melts. I can’t imagine my life without her and have already sort of forgotten what life was like before she was born. I want her to have a wonderful and full life. I don’t want her quality of life to be diminished because of this. I don’t want her life to be more difficult because of this. It breaks my heart to think of all of the what-ifs and how this may affect her over time.

And then she locks eyes with me and smiles and I know that whatever comes we are going to be ok. My beautiful little girl will always be my beautiful little girl. And I feel ready to face whatever comes, together, as a family.

Rejoicing in the journey –
Bethany Stedman

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