Reflection

 Today is infant & pregnancy loss remembrance day. no matter what, I will always celebrate my tiny "what if" every day, especially today. 

It's different than last year; last year, everything was so fresh and I really didn't think I would be OK again. Finding out my baby didn't have a heartbeat at our first ultrasound was the hardest thing I've had to accept. It took away all my joy and hope. I finally got in touch with a therapist because I needed help processing the extraordinary empty, isolated feeling I had. 

I was so happy that Color Street came out with a set this year to honor infant & pregnancy loss, called Never Forgotten. Everyone grieves differently, but this set is so meaningful to so many, and I've been able to connect with so many more ladies about their stories. Wearing this set proudly today <3 To all the other parents who have experienced loss: I send you all the love, especially today. I see you. I feel you. 

Pictured: the book I received at my ultrasound and a copy of the form to release the remains of my baby to the hospital so pathology could test them. I chose to take the "pill" to pass the remains of my child as I was advised it was safer than a D&C (operation). I wish I would have done the D&C, because I was not prepared for the 24 hours I experienced following the pill. It induces labor, and I had contractions for 6 hours. It was the most traumatizing and painful day of my life. 

 

Reality Bites

Sometimes you just need a good 90's movie title to be the hero of the day, because I'm not coming up with anything clever today.

The last year has been a roller coaster of emotions. Like every day I wanted to wear a pin with this picture on it, because so. many. emotions. The excellent, the awful, the in-between emotions. All of the emotions. 

About a year ago, I went off my MS medication, Gilenya so we could start a family and give Tully a sibling <3 Gilenya is a medication used to treat MS, aka Fingolimod. This med stops the passing of certain white blood cells through the blood/brain barrier into the CNS (Central Nervous System) to prevent further de-mylentaion on the nerves. 

Gilenya was off the table for trying to conceive. Along with pretty much any DMD. Long story short, I had an MRI (baseline) in June 2019 to check on disease activity. It showed several new flares. Typically normal in folks stopping Gilenya, so not a huge concern. 

It also happens I got pregnant in June 2019!! I was so excited, our window to get pregnant and not have to worry about relapses was here! We were going to have a tiny human. 

Fast forward to August 5th: our ultrasound day. I was bursting at the seems with joy, so excited to show off the tiny human growing inside me to my husband so he could see too! Well the ultrasound showed tiny baby B had no heartbeat. It was a failed pregnancy, aka miscarriage. 

We started to try again in December... January was tough with being away during fertile days due to training for my new job. February brought so much anxiety because of the scheduled MRI. 

Finally MRI day comes. It's a day I've been dreading for a while, 3 hours in a tiny tube with the most magnetic magnets circling me. Why does it have to be so LOUD???

Today, I had the results read (and shown) to me. It's so strange seeing all the weird, wavy layers of your brain and spinal cord in black and white and cloudy images. The cloudy images are the ones you don't want to see... and I have plenty of those, both new and old. The new lesions (that's what the cool kids call them...) are the ones that scare me. Terrify me. 

Today was the first time my provider said adoption and surrogacy might be the best options for us. It's not that we can't keep trying, but the longer I'm off any medication, the more likely I am to have an attack which is scary. I've had three really scary attacks in the past and have been lucky enough to recover from them, but there's always a chance recovery won't happen. So here we are, time is my greatest enemy right now. Being 34, continuing to not be on medication. So I have to make sure I'm as healthy as possible for our future family. And if we don't fix it ASAP... The distant future might not be so bright. 

We are going to keep trying to add to our family organically for the foreseeable future, but will keep options open. I'll be starting a new DMD soon, an infusion that has some studies in pregnancy, and has shown it's relatively safe. 

My body has been failing me for years, and it's beyond frustrating. Send positive vibes our way <3 <3 <3