October 13, 2018

When we just know

I don’t know if I wrote it down here, or on Instagram or maybe just shared it with friends and family but before Birdie was born I had the most wild dream about her birth.

She came through me like a force and I was so there. I grabbed her as she made her way out into this wild world and she had this wild fiery red hair.

I haven’t shared much about this past month online, for no other reason than maybe I just didn’t have words. And I’ve been so tired. So very very tired.

Birdie was born with a hemangioma on the back of her head – originally white at birth, it quickly turned pink and then bright red. It’s a collection of blood vessels on the outside of her body, it’s physically hot and it really wasn’t anything to be worried about until it was. We still like to think of it as her badass birthmark – a symbol of her wild entrance earthside and all that she brings to the table. I envisioned her being the same as Agatha and although they both share exuberant extroverted personalities (from what I can tell at least), there is a distinct calmness in Birdie that wasn’t present with Agatha at this age. I’ve debated so many times whether or not it’s her that is calm or if in fact it’s actually me. The second time around is proving to be different in so many ways.

At Birdie’s 4 month check up I circled back to the conversation with our pediatrician about her hemangeomia – something in my head just wanted to know if there was more going on. After conferencing with a pediatric dermatologist we were notified that we should definitely come in. The location, size and way her hemangioma was presenting brought to light this rare disease that is made up of several parts. The head, the heart, the eyes, the brain and the spine. After talking it through, we decided to move forward with the testing they suggested to see what (if anything) was going on. It was a lot. It was a weight I haven’t carried before and it sent me into this incredibly primal space where I could literally only see what was going on right in front of me. Where I could barely leave Birdie for more than a hour at night, where sleep deprivation kicked in (for all of us) and where the tension and anxiety in our home was sitting and stewing.

The first two tests weren’t all that invasive, an eye exam to make sure there weren’t any vascular anomalies and an echocardiogram to see if there were any other hemangiomas in her heart. But they were something to me. They meant she had to have drops put into her eyes and people shaking things in front of her face. She had to be swaddled up in blankets and covered in stickers to hear the rhythm of her heart. Although the eye exam was clear, they did find something in her heart. A small something, but something that we have to think about and monitor. The third test was a brain MRI and MRA scanning her brain and arteries for vascular anomalies. In order to be diagnosed with this disease, a child needs to have 3 out of 5 of the criteria. With the findings in her heart, Birdie had 2 out of 5 and the brain scans were the next day.

I was sitting in the parking lot waiting to pick up our CSA that night when I texted my best friend and told her how afraid I was. How openly, heart wrenching and completely terrified I actually felt. I told her I didn’t want to talk about it but that I just wanted to share those words with her. I needed someone to listen. I think when so many peoples response to you is “I’m sure she’ll be fine” you just kind of tune out and start to feel like you’re crazy for feeling so worried. You start to doubt what you’re feeling, you start to try to make other people feel better.

I don’t know when it happened but at some point, I just realized (and in my heart knew) that I can’t possibly stop how I’m feeling.

I am literally sharing life with this human (who has only been on this earth for 5 freaking months) and I am allowed to feel EXACTLY how I am feeling. Primal, deep, scared, worried and completely spaced.

On the day we waiting for her brain scan results I took the girls to the Landscape Arboretum. If you live in Minnesota and haven’t been I highly recommend it. It’s so wildly beautiful almost every season of the year, but in particular (I think) in the Fall. They have this 3 mile loop that you can drive but on that day, we opted to walk. Just the three of us – all bundled up allowing ourselves to be in nature and let it do it’s magic. I had been clutching my phone to my body for what felt like a week when Agatha told me she had to pee. She hopped out of the stroller and we quickly zipped into the port-o-potty at the start of the 3 mile loop. When we got back to the stroller I felt for my phone – I had left it in the stroller and hadn’t heard it ring. I immediately burst into tears and screamed simultaneously. Aggie looked pretty terrified and Birdie started to cry in the carrier. I felt overstimulated, anxious, angry and just so overwhelmed. I tried calling the office back multiple times but the doctor was in with another patient.

Her results were clear but it took me until the very end of that 3 mile loop to be able to breathe again. I feel as though I went through every range of emotion with both the girls and myself on that walk. Openly allowing myself to still keep feeling whatever was coming up. It wasn’t easy because I kept feeling like I was scaring my kids by showing how deeply afraid I had been. And how angry I felt in that moment.

I was up nursing or picking Birdie up every hour to two hours at night. I couldn’t possibly imagine what was going on in her tiny little body – purging the IV fluid, the dye they injected, the anesthesia they gave her. It overwhelmed me thinking about how much we had just put her tiny body through to get a negative result.

I don’t regret doing the tests but I did feel angry. I say did because today I don’t. I feel as though I’m breathing again and that allows me to see (and feel) things more clearly.

Today I watched her crawl from one end of the room to the other just to get close to her sisters big orange plastic car. I watched her put herself to sleep for three naps. I held her as she nursed and popped on and off just checking out her environment. I held her and kissed her and loved on her so hard because she’s here and she’s healthy.

When I think about the fact that she’s healthy, my mind immediately goes to all of the tiny humans that aren’t. To all the parents who do have kids that are unwell, or who have a terminal illness or some wildly rare disease. I started to compare myself to them two weeks ago telling myself to “buck up”, that my kid would probably be fine and even if she wasn’t, someone would have it worse.

But I threw that out the window.

We’re all walking these crazy different paths, we all have our own experiences that we’re coming from, our own hearts that we’re bringing to the table. The best thing we can do in this moment ( I think ) is to work with that. To own that and be in that. To show up for our own hearts, our kids, our marriages and what’s happening now.

On Tuesday I realized for the first time in a long time that I can create a rhythm in our home. Simple things. New soups on Mondays. Bake bread every Thursday. Home made pizza on Friday nights with a new cake recipe on the weekend. I want to take the same walk with the girls and watch how it changes week to week. I want to sit down and draw or colour as often as I can with Aggie and get on Birdie’s level as she’s crawling around. I want to have them feel that sense of grounded security in our days because why not?

That’s our choice to make.

So much to be okay with. So much to feel proud of. So much to be thankful for. So much to experience and process and talk about (or not talk about).

  1. Dedicate some time to doing something that genuinely relaxes you, excites you or makes you feel curious
  2. Sit down and consciously ask your partner or someone important in your life how their doing, what happened in their day and what they’re feeling interested in these days
  3. Remind yourself that only you can decide how you feel
  4. Take lots of breaks throughout your day to stretch and breathe slowly
  5. Honour what feels good for your body. I love Ayurveda for that specifically. Find out what your dosha is and see if you can cook and eat to help create more balance within your own body. (I am Vata – here is a quick rundown of what that looks like.). I ate for my dosha for 4 months before conceiving Birdie and again for 2 weeks postpartum. I honestly will say it is one of the biggest ways I prepared myself for conception again and why I feel as though I conceived so quickly the second time.
  6.  Each season build up family traditions that are truly meaningful to you. I feel like the the most important thing is to celebrate things that are exciting, connecting, nourishing, and meaningful for your own family. Visit an orchard, go somewhere the same time of year each year to watch the leaves change colour, or make your kids costumes with your partner throughout the month of October.
  7. Try to include your littles in jobs around the house. I always go back to my love for The Little House On The Prairie and just think – what would we be doing if we lived in that time? What tasks would my little ones have at home? Helping to set a table? Harvesting food? Pouring water? Mixing flour? Allow them to try it, it’s amazing to see their face light up when they’ve owned a task from start to finish.

After existing in such a fight or flight mode for the month of September I finding myself connecting to or maybe even more so remembering what it can feel like to go a bit slower and to be excited and curious about really beautiful small things. I know it isn’t always like this but with more slowness for me, I emit more goodness to my people. And after 5 months of learning how to be a family of 4, of figuring out how to communicate and set boundaries with a toddler, how to navigate marriage and partnership and finding that balance with two kids, I am welcoming this new shift with open arms.

Rhythms change as families change. It will be different each Season.

2 Comments

  • KP says:

    Oh Val, I’ve just read this and my heart is aching for you and Birdie and this terrible experience. I had no idea. I’m sending you so much love. I will get a Voxer message or an email into cyberspace this week xxxx

    • valentina says:

      Love you K and thank you for reading and sending love. I can always feel it!! I know we will connect when the time is right xoxoxo

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