Feeling It All

The last several days, I’ve been re-reading old posts that I’d written on this little blog and also in some of the BabyCenter groups that I was active in around the time that we began to worry that something was going on with Ruby’s development and then again when we found out we were expecting Landon and the months of waiting that followed. It’s still so hard to go back to that time. Thankfully, I had a strong support system of family, friends, and random strangers on the internet (who became the most incredible friends) that were there through each tough moment.

I remember sobbing in my office at work, spilling my heart to a friend in words that probably made no sense, after I found out they wanted to test Ruby for SMA. My friend didn’t know what to say, but he was there and that’s all I needed. I remember sitting on our bed with Terence,  losing my ever-loving mind when I stumbled upon a blog post written by another mom of a child with SMA and realizing that her description of her daughter’s symptoms fit my daughter’s to a T. When we got Ruby’s diagnosis, the office I worked in was under renovation so my desk was literally in the middle of an open space, with staff and co-workers buzzing by all the time. When I was unable to hold in my tears and anxiety, my friend Tanya was always there to let me vent in her office. And my best friend, Michelle, was the first person I saw after I got the phone call from the geneticist, telling me that Landon had zero copies of  the SMN1 gene & would indeed live with SMA. I put the phone down, called Terence, and then Michelle. Thank the Lord we worked together because two minutes later, she was in my office, folding me up in a hug, and crying right along with me, understanding that I loved Landon already more than anything but I was terrified for what the future may hold.

My heart is pounding as I type these memories out because it was all so traumatic. And it’s had lasting effects - the absolute mess of anxiety attacks and obsessing over the unknown and having faith and doing all we can/need to do. I absolutely know I am not alone in these feelings. Lots of my friends who have gone through the same experiences have shared the flashbacks, the panic attacks, the depression, and fear they experience. We push it back and move forward because that is just what has to be done but the trauma of the experience never goes away.

 I am so thankful that this experience is MY experience and will never be Ruby’s or Landon’s. They don’t have a “diagnosis day”. This is their life. It’s beautiful and it’s what they know. Their biggest struggle is the last time out I put them in time out or the last time I refused to enter Target’s toy section with them  I won’t project my thoughts or feelings on them about my experience as a parent and learning about SMA.. But the fact remains - it is my story and as a parent, in order to move forward, I have to speak the truth about it from time to time. It helps me release the tension when it builds up and it forces me to reflect on how far we’ve all come since then which is a good thing. It’s a reflection of what Glennon Doyle says - first the pain, then the rising. Friday, then Sunday. Dark cocoon, then blossoming butterfly.

So I guess I’ve been doing that lately, going through that cycle again. It doesn’t come around all that often but when it does, I resolved long ago to let myself feel it all. One of the things I’ve learned from the last several years of my life is the importantance of sitting in the pain when it comes. Pushing it down will only make me depressed and bitter, neither of which I want to be. I want to share this because I’m often told by others that they are amazed by how I hold it all together but the truth is that I don’t all the time. The only reason I’m able to maintain the positive outlook that I have is directly related to the fact that I don’t try to have it all together and I let myself feel the shock and pain from time to time. So if that’s you - if you’re trying so hard to avoid letting it all out, admitting your vulnerability, or speaking about your fears (about anything in life), please know that you’re not alone. Life is awful and amazing and it just keeps spinning. And we are all on this ride together.