Archive for the ‘motherhood’ Category

Visions for my Children

April 10th, 2012

In the past few months I’ve had to change a lot of the expectations I held about my daughter. As I’ve written before my baby, Sage, has microcephaly and we were recently told she has bilateral polymicrogyria.

As I’ve processed through all of that I feel like God gave me a small gift, He reminded me of the prayers I wrote for each of my children before they were born.

It’s been truly moving for me to think back over those words and prayers. And I’ve found it so encouraging that even as I’ve had to change my expectations for Sage the core words and images that I was given for her before she was born have not changed. The things I prayed most for her before she was born are still the things I pray for her now. The core desires I had for who she would become don’t need to change at all by this diagnosis.

With each of my children I had a few words that were particularly important as I thought about the person I desired them to be. And with each of my children I had a picture of who they are before they were ever born. It’s been interesting (and affirming) to me that Sage’s diagnosis hasn’t changed or effected my words for her. It has also been very touching for me that Sage’s diagnosis has actually made my words/visions for my son take on new life and meaning.

Sage’s words/images:

  • Joy
  • Light
  • intuitive wisdom
  • images of nature and particularly the sky and moon
  • “she will restore to you the joy of your salvation”

(you can see how these words play out and connect to one another by reading the prayer I wrote for Sage when she was first born)

Thaddeus’s words/images:

  • protector (“protect him that he might protect others”)
  • empathetic
  • courageous heart
  • heart felt, passionate
  • guard (not the soldier charging into battle but the soldier staying back, standing guard, protecting the women and children, not out of cowardice, but conviction)
  • defender of the weak
  • protector of those who cannot protect themselves

(read the prayer I wrote for Thad to learn more about our desires for him)

The pictures I had for each of my children were so different from each other, and I can see now how appropriate that was on so many levels. They are very different little people.

Sage’s diagnosis has changed a lot about how I think about her future and the expectations I have for her. But (so far) it hasn’t at all changed these core words/images I pray for her or for my son. If anything it has only added a new depth to how I pray over both of my children.

I’m grateful for these images and I look forward to seeing how they play out in both of my children’s lives.

Rejoicing in the journey,

Bethany Stedman

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Early Intervention: A New Journey

February 22nd, 2012

Last week we started our journey into early intervention. And I’m so glad that we did.

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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Settling into Who We Are

February 11th, 2012

Just before the new year I wrote about how 2011 was a year of instability, a year of shifting sand, but now we finally feel like we are standing on solid ground. We are finally living in our own space. Bryan’s work has really stabilized and expanded. And for the first time I finally feel like a mom. That may sound silly since I became a mom more than two years ago, but it’s only been recently that I’ve really settled into being a mom. I think it’s only been since the birth of my second child that I’ve fully made peace with being a mom and allowed motherhood to become one of my primary identities.

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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.

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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.”

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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.

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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.

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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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Update on Baby Sage’s MRI

February 4th, 2012

Yesterday we made our way to Seattle Children’s Hospital in the dark.

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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.

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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.

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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.

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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.

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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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Special Needs

January 25th, 2012

It’s funny how sometimes even when you sort of expect something it can still shock you when it happens.

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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