Knee surgery

Seven years ago today, I checked into the hospital to have my knee cut open on the front and back to start the arduous process of fighting what everyone believed to be a non-cancerous tumor in my right knee. They called it PVNS, abbreviated for pigmented villonodular synovitis. Inflammation in my joint lining that had a 50% recurrence rate after being cut out. Some patients even endured radiation to get rid of it.

That spring and summer my knee blew up to the size of a small melon. I couldn’t straighten it all the way and it felt hot to the touch. Who knows how long something had actually be going on though. I remember seeing my doctor in high school about that knee. It was slightly irritating me, but I can’t remember in what sense now because it was so mild compared to what I experienced 15 years later. The doctor then said I just had an extended tendon in my knee. I used to sit with my right leg bend all the way underneath me. Maybe that was the beginning. Then, summer of 2012 after xrays and MRIs another doctor wanted me to come in immediately to discuss what they found. I’ll never forget what she said, “you have a very unhappy knee” followed by pigmented villonodular synovitis. My mind spun as tried to understand what she was saying. The only reason she even knew what this was after the imagine report was because a friend of hers did research on it in med school. I was given a handful of packets and sent on my way and told the surgeon’s office would be in touch.

Thank God my mom was in the room with me and my fiance in the lobby. I don’t remember much about the rest of that day besides just being confused about what was happening in my knee. I found a small support group on facebook for PVNS. Every person had horror stories. The surgeon who was going to treat me, likewise wasn’t very optimistic. She was one of two surgeons in the state that was an expert in this disease. My case was diffuse, or involving all of the joint so we had no choice but open surgery. I was devastated. This was the most challenging point of my life at this point.

The morning of Nov. 8, I checked in very early to the top ranked hospital. I couldn’t figure out my gown, and Adam had stepped out of my prep room for a second so I sat there naked until a nurse came around and helped me get my gown on. Then I had an anxiety attack. The anesthesiologist said she’d get me some meds to calm my nerves. I remember watching the ultrasound of my groin area as she found my femoral nerve to place the nerve block and then my general anesthesia quickly set in and I fell asleep.

The first thing I remember when I woke up was my surgeon telling me “the good news is you don’t have PVNS. The bad news is that we don’t know what’s wrong with your knee.” They had only needed to open my knee from the front and still removed my synovial tissue and did some other repair work, but being surgeons, admitted they were not experts on joint issues. I was furious I hadn’t insisted on a biopsy of the fluid in my knee to confirm PVNS. They just seemed so sure that’s what it was.

Recovery was hard. Crutches for 9 weeks. I had a bad reaction to some pain meds. My nerve block stopped working a few days before they estimated and we had to pull it out on our own at home. The pain was second only to delivering James without meds. Only this pain dragged on for weeks. I remember the first time I accidentally put weight on my right foot – searing pain like my nerves were on fire; I didn’t make that mistake again. And all of this happening during the holidays and 6 months before our wedding.

After I finished PT and checkups with the surgeon, I decided to switch providers. The next year I was on my husband’s insurance and decided to go with another network of doctors. I was just unimpressed with the way my case had be handled at this university based hospital. There was no care for the individual, or at least I felt that way.

A couple of years later my new doctors diagnosed me with arthritis, suspected rheumatoid arthritis. My knee blowing up was likely the beginning of that and I would have had to have surgery anyway. My medication has mostly been controlling my disease and I love my team of doctors. They cried with me when James died, celebrate my accomplishments, and really get to know me as a person and cater my treatment to what’s best for the whole me.

It’s likely that switching doctors put us on our path with James too. My obgyn sent us to the high-risk doctors who knew people at SCH and helped us make those connections. If James had been admitted to one of the children’s hospitals in town, I’m sure the outcome would have been the same, but I am so thankful for where we did end up. SCH is such a huge part of our story.

My knee is better now. I don’t have much muscle tone on that leg, and I still can’t fully extend it, but I am able to hike for several miles without getting tired. It hurts when I’m working too much standing on concrete and when I ovulate. But I can get around pretty well and know my limits.

I used to have PTSD about my surgery. I would replay that whole day and the following weeks in my mind. That has faded, like my scar. I now have even more horrifying stories to tell and sometimes wonder if living through knee surgery helped prepare me for our life with James. I know I’m not special. I know countless people have knee surgery. But it was a huge thing that changed the trajectory of my life.

So tonight I celebrate 7 years with a scar. I’m still learning the lessons it’s teaching me.

Sunset Ritual

Yesterday was the end of Pregnancy and Infant Loss Awareness Month. It ends with the sun setting just as it begins with the sun rising. Yesterday was pretty special. My episode on the Podcast Andy’s Mom was posted. If you haven’t heard it yet, you can find it here: https://andysmom.com/2019/10/31/episode-10-james-mom/

We recorded the episode just the day before and when I found out that Marcy would be posting it on Oct. 31st I was thrilled; it would be the perfect end to the month of reflection. I was nervous before recording but once we started chatting, Marcy made me feel so comfortable with her effortless hosting and listening skills. The response so far has been amazing, so please continue to share my episode and her podcast so that we can normalize the conversation about child loss. I felt so happy and light after we recorded and after the episode was posted as well. It feels so good to share James’ story with a wider audience and hope that we can make the tiniest difference for someone else.

Yesterday evening I was cooking dinner and waiting for the sun to set when I realized I didn’t have enough whipping cream. I had to run out to the store and feared I would miss the sunset. Luckily the convenience store down the street had just what I needed and as I got back into my car, a Queen song was playing on the radio. James loved Queen when I was pregnant with him. So last night I knew that was him telling me he’s still with me and things are good. I drove home rocking out to Bohemian Rhapsody. The sun was setting in soft pinks and purples; I was thrilled I wasn’t going to miss it. Dropping off my cream at the house, I walked down the street to the intersection, the best spot to capture the sunset. I captured some photos, but the magic of the few moments the sun hangs on the horizon never translates well to the screen. Still, I was happy I caught that moment myself.

So I wrap up a month of grief reflections, perhaps for the first time, with hope. Hope that my story may help another bereaved parent, that James’ lesson of love is still changing the world, that my future is still bright and full of potential adventures. Of course I would love to have James with me here in the flesh. But deep down I know his spirit was too bright to remain in this broken world. The work he is doing from the other world is beyond my comprehension – I can just feel it in my bones as I struggle to put into human words what he’s doing.

Thank you to everyone who is witnessing my journey. It’s full of grief and hope and twists and turns like I never imagined. But it helps me to walk each day knowing I have a community of people listening the best they can. But I have one request from you: Just because Pregnancy and Infant Loss Awareness Month is over, doesn’t mean I want to stop the conversation about James and other children who have died. Please keep them in your thoughts, help them guide your daily decisions, talk to me and other people about them. It means the world to me, and other parents of angels.

Gifts in Grief

I just finished an amazing conversation with Marcy Larson for her podcast Andy’s Mom. She’ll be posting the episode tomorrow  which feels like such a great way to wrap up Pregnancy and Infant Loss Awareness Month.

Thank you so much for the response to my last post. The support and the acknowledgement of my grief helps the broken places feel put back together ever so slightly. But here’s the thing: that grief lives side by side with my love for James. Marcy and I talked about this quite a bit. Please don’t shy away from my grief, it just means that I loved him so much.

And yes, that love is a gift in grief. James opened my world to a type of love I didn’t know existed. For him, for his caretakers, for my husband, for my community. For myself. It’s hard and scary to love the way he taught me, but I do it anyway. Because I know it is my purpose. I know that I can turn my pain and darkness into light and hope for others.

If given the choice, I would do it all over again. The traumatic labor and delivery. The endless days in hospitals with a steep learning curve of medical lingo and second guessing what was best for our baby. Hours of pumping and giving literally everything I had for this tiny person. Holding him in my arms as he took his last breath. All of it. Because he was my teacher and my true love. I am on a better path because of him. That is my gift in grief.

Dear World

It’s still hard. Every single day. Some days, like today, are harder. And I often, like today, can’t pinpoint why. Opening up to my grief is exhausting. But living a busy life that makes it hard to acknowledge my grief is also exhausting. Right now I’m in the super slow days of fall, with not much to do besides projects at home. I try to keep busy, but it’s hard to keep my mind off the fact that James is gone. Spending a whole month reflecting on and bringing awareness to infant loss opens a lot of wounds that have been covered up most of the year.

And then a few week ago I was invited to be on a podcast called Andy’s Mom about child loss. I’m so excited to be able to share James’ story but I’ve been going through the details trying to decipher what will be the best parts to share to help other families. And revisiting some of those details has started to rip my heart open again.

AND THEN, Adam and I discovered that there was a whole journal article written about James that we didn’t even know about. A case study about his medical condition and PIK3CA genetic mutation. We discovered it in a list of recently published articles in the vascular team’s newsletter from SCH. I went through about a dozen emotions within 5 minutes of discovering the article. Anger that no one on the author team bothered to inform of us the publication, pride that the medical world can learn something from our little boy’s short life, relief to see pictures of his malformation because I don’t have any and was forgetting what it looked like, shock at pictures of his brain after autopsy, and most of all despair at how helpless we were to help provide a positive outcome for him. The article detailed every major chapter of James’ medical history, from my 20 week scan where we found out about his malformation, to the complications that arose from his disease, and finally through his autopsy and what that revealed. To see his life written in just a few pages, so clinically, without any mention of James as a person is heartbreaking. To read an unbiased account of how hard he really had it. But also knowing that most of the doctors on the author list knew James personally; he was more than just a baby with a rare disease to them. I understand completely that medical articles have to be written this way; I also understand why they didn’t tell us it was published. But it was hard to find that article and relive the reason that James isn’t here today.

I try to hold onto the love. The magical moments we shared during our time together. But it’s so hard.

IMG_1071

Creative Heart

There are lots of ways that I have used my creativity in my grief. Cooking, baking, and gardening are my most often used creative tools. I’m a nurturer at heart and those activities help me to fulfill that role. Writing is my preferred creative outlet, but I don’t practice enough. That is why I love this project, it’s encouragement, prompts, and a reason to write. I still hope to one day put all of James’ story into one cohesive piece. I just need to find the courage to sit down and do it.

One creative grief outlet that took me by surprise was painting rocks. A friend of mine did it as an activity with her kids and wrote James’ Love Project page on the back of the rocks. Last year our family decided to try painting rocks ourselves and started hiding them around parks and places we would visit for strangers to find and brighten their day. I did a series of rocks on the birthdays of the children of the mommas I met at my first retreat. It was such a special way to connect with those angels on their birthdays and each one was surprisingly different. Adam has gotten into rock painting too and does gorgeous landscapes.

We have heard back from only a fraction of the rocks that have gone out into the world but some of the stories are amazing. One that we took to Maui came back to the mainland and was found in Washington by a family on a memorial hike for a loved one. The rock had a butterfly on it which was their symbol for the family member that had passed. Another rock made it’s way to Iceland and the little girl who found it used it as part of the decorations for her birthday party.

We know that our Love Rocks have touched more lives. It’s a special way to honor James and his love through creativity.

(Sacajawea Peak in the Wallowas painted by Adam)

Wave of Light

Today people all around the world are lighting candles at 7pm to remember the children we have lost. This creates a wave of light over the globe. I woke up to my social media filled with pictures and posts about today to mark International Pregnancy and Infant Loss Remembrance Day.

It’s overwhelming to be in this community. Some of the most amazing people I have met are loss parents. It makes my heart swell to know they will remember James today, speak his name, and light a candle for him and others. I have other loved ones remembering James today too; people who haven’t lost their own children but have been touched by the stories of us who have. Thank you to everyone remembering James today and every day.

Tonight I will light a candle for James and I will light another for all of the angels I have met through this community. Their numbers grow the more I reach out and meet parents like me. Each angel is special to me and I send my light up to them tonight and hope they can send their light back down to their parents. We love you angels. We miss you.

Seasons

I think of James everyday so each season brings different emotions and memories surrounding him.

Winter
It’s hard to separate any sadness I have for James from the SAD (seasonal affective disorder) of dark, cold, Pacific NW winters. I usually handle winters here well, but after the New Year I sometimes do tend to get a bit gloomy and it’s easier to wallow in my grief during those times. Earlier in the winter, holidays can sometimes be hard. I wish that James was with us, but I also wish other people were with us too. A general nostalgia for how life used to be can cloud the holidays but I try to hold on to the cheer that makes this season so special for me.

Spring
Spring is perhaps when I miss James the most. I relished my pregnancy at that time of the year, entering my third trimester. I spent a lot of time in my garden that spring, as I have every year since. Spring is full of hope and even though at that time we knew that James would have some health challenges, I was also full of hope. I love the spring. Born May 11, just one week before our wedding anniversary, and Mother’s Day usually somewhere in between, late spring is filled with reasons to celebrate and reasons to mourn.
IMG_0006

Summer
The short time that James was with us was during the summer. I’m usually so busy with work that I don’t have much time to reflect on where we were that summer. But occasionally, I’ll get a pang of longing for the Ronald McDonald House or Seattle Children’s Hospital and think about our day to day lives that summer. I wanted to get out of there so bad when we were living it. Just to get back to Portland and live a normal life with James. But now that it’s all in the past, I cling to those memories of mundane walks between the house and hospital. Or late nights staying up with James when the hospital was quieter. It’s a chapter unlike any other in my story. And when I slow down in my summers now, I can almost feel what it was like. July 12th is always heartbreaking. Marking more distance between the day that we said goodbye and the present.

Fall
Fall is when I long for James the most. That first autumn after he died I was aching for the grey rainy season to start. I just needed the weather to mirror what I was feeling. I needed to have the excuse to hole up in my home and stare out the window. It lends to a type of contemplation that is jut easier with that type of weather. I now also long for this project. Fall to me now means remembering James during Pregnancy and Infant Loss Awareness month.