15 August 2018
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.
06 March 2015
09 June 2014
08 April 2014
22 January 2014
one year ago today, we had ruby's first neurology appointment. two weeks later, two days before my 30th birthday, we got her diagnosis of SMA.
earlier this month, I was having a lot of anxiety & flashbacks to those days last year, when I just knew something was really "wrong" & then feeling like we were living our worst nightmare.
a year later, some days are really painful, but those days are few & far in between. this is our life & it is wonderful. it's not what we imagined it would be. it's so much more. SMA & all that comes with it has taught me so much about perspective, about gratitude, and about faith.
in just a few months, we will welcome another baby. this time we will know from the beginning that he will also be affected by SMA. we won't worry for months about how best to help him, we will know how. we won't experience a "diagnosis day" like we did with ruby. we will have a team of people and support in place from the get-go that we trust to help support him when the time comes that he needs the extra support.
when we got ruby's diagnosis, I felt like everything had changed in an instant. but almost as quickly, I realized that nothing really ever changed at all. we are raising our kids, just as we would if SMA didn't affect our lives. instead of living in constant fear of what the future may bring, I live each day, focuses on being thankful for what we have.
"may your choices reflect your hopes, not your fears. - nelson mandela
01 December 2013
thanks for hanging around. i haven't posted in months. lots going on but i've known exactly what i wanted to post the next time i logged in. so, here i am to document a few details from our trip to our first Families of SMA Conference, which was held at Disneyland this year. it was a successful trip. full of lots to do and not a ton of down time, but i really couldn't be happier with how it all went.
there was a program specifically for newly diagnosed families that we attended the first afternoon. i won't lie. it was hard. i sat and listened, holding T's hand, with tears streaming down my face the whole session. the president of FSMA spoke and has a very genuine, kind way of communicating. it was a relief to be somewhere safe, surrounded by people who knew exactly how we were feeling. at first, i kept thinking, "i hope i'm not the only one crying" but when we took our break, i saw that i clearly wasn't alone. i think that's what i loved the most about conference. we didn't have to explain why we were crying at any given moment. we didn't have to explain anything. everyone just gets us. in our every day life, we have a mostly positive attitude. we keep smiles on and carry on with our daily responsibilities. we're strong for one another (T & i) and for ruby. and because it doesn't do any good to constantly dwell on the pain that SMA brings. but i know that in order to carry on, we have to sometimes let ourselves sit with the fear and sadness that we have. some moments we have to give in to it in order to let it out, let it go, and move forward. so, the conference was good for me in that way. before the conference, i hadn't really reached out to the SMA community. after the conference, i was friending people on facebook like a maniac. :)
next year's conference is in DC and we are hopeful that we will be able to go. lots to plan for it but it's something we don't want to miss out on. i've connected with many families in the online SMA community and really want to be able to meet them in person, too.
we went to several different sessions but the one that i liked the most and has stayed with me was a writing workshop. it was led by a husband and wife, who were both writers, and who also have a child who is diagnosed with SMA. one of the exercises we did was to write out our recollection of a significant memory. i thought i would share what i wrote here.
a memory: ruby's diagnosis day
a lot of hard surfaces, tiles, counters
ruby playing with crayons
a lot of new faces
ruby's toys all around us
a lot of words. most of which i don't remember now, other than the doctor answering Terence's question about whether ruby will ever walk (no.)
the doctor's strong accent
hand sanitizer and soap
the light is bright and harsh. it isn't soft. there iss no place to hide in it.
i want to leave.
i think that this can't be happening. it doesn't make sense.
i feel sick to my stomach. i feel shocked even though i knew this was the answer already, really.
we talk to several strangers & then we leave.
i call my family.
i say that my husband might need more support.
i realize that everything has changed. and that nothing really has at all.