Just a few months ago when I was 7 months pregnant with Millie , I planned to go to bed early and read. I left Rich in the living room and retired to our room only to be hit with the most sudden, vivid, real time memories of our Jane, as a 2 day old having seizures. I could see her eyes, movements , and the exact place I was sitting in the living room when, 4 1/2 years ago, I had no idea my baby was seizing, but she unfortunately was. The memory was abrasive and downright rude but I knew I couldn’t run from it, I had to ride through it. I crumbled into our master bathroom and felt it all over again. I processed.
Millie is now 2 months old. A few weeks ago we pushed her and Haven around in the cart at Costco. When we got to the produce section Rich asked me if “Millie looked ok”. I looked down and thought I noticed her shaking. My heart went to my throat and the words of Jane’s neurologist when I was pregnant with our second daughter Haven crept into my consciousness , “We cannot guarantee Jane’s condition is not genetic”.
Turns out, Rich thought Millie looked squished in her car seat. That was all. But all it took was that one question for grief and traumatic triggers to sweep in.
By the time we got to the jumbo bag of chips aisle I told him , “Hey, you can’t just ASK me if Millie is ok.” Ha!! How confusing for my poor husband. I told him to frame his questions a little more specific so I didn’t end up passing out in the tub of bananas at Costco. He understood. If anyone understands, it’s him.
When Jane was diagnosed with life long disabilities and unexplained epilepsy, we were given some medical explanations and sent home with a binder of resources and medications.
Social workers would come to our house and ask about her weight, how many words she could say and if she could walk on her one. No professional ever said , “I’m sorry”, or “This must be so hard for you”. This was just it. This was our new life.
We were of course heartbroken to the core. But life had to be lived so I processed the best I could. There were tears. But this was reality, and this was what we had to do. So we took up our burden and tried to make the most of it. Later experiencing some panic attacks, and very confused inner dialogue due to some unprocessed yet necessary emotions.
It wasn’t until 4 years after Jane’s diagnosis that I read an article by a special needs parent in which they let the reader know that you can and will experience all the levels of grief that someone who lost a child has. Wow. I would never want to minimize the pain of losing a child. I can’t imagine. But the truth in the concept of it changed everything for me.
It sounds very harsh but it’s so important for the parent dealing with a special needs diagnosis to understand in order to make sense of all the mixed feelings that occur . The dream of the daughter we thought that we may take to dance class or walk down the aisle had died. Our dream of owning a “normal” car (oh yes, that is a real dream you don’t know you have until it’s gone), that was gone. Our dream of “picking up and going” whenever we wanted with our future children, had died. Our daughters ability to see, walk and talk had been destroyed. Seeing our daughter’s children, teaching her to drive, and the list goes on, it had all died.
And in most special needs situation, the reality of what exactly has died is not just a one time experience. It’s a slow unveiling of all the things they are falling behind in, losing abilities for and realities of things that will never happen for them. It can occur over the course of months with new diagnosis, or in a moment when old memories bring up new grief.
Since this is all so depressing, I feel inclined to mention that we always hope for our daughter. We always believe that miracles can happen! We expect good things for her! That’s the beauty of the unexpected and living with faith. It’s never really over. And when it is, heaven is so much better.
But in the meantime, grief is real and worth processing. In all its sudden ugliness and abruptness, grief is a part of this journey and it has to be faced. And I wish someone had told me that before we left that hospital.
When you stifle grief or memories or pain you run the risk of a very bottled up and unauthentic life. You end up going through the motions, living outside of yourself and never knowing true joy because you’re running from the real pain. (Dr Brene Brown touches so much on this in her book “The Gifts of Imperfection”, I recommend it.)
I don’t believe in a life of depression and sadness, but I do believe in facing the real emotion of what life has dealt you. Being vulnerable to the pain. Allowing others to see you cry. Being a broken mess so someone else is free to be their own broken self. The grief cannot be avoided but the beauty of vulnerability can come through it.
That’s why one of my favorite verses in the Bible is Psalm 18:6, “In my distress I cried to the Lord”. Meaning, when I was in the middle of it, when I was walking through it, because it was necessary to walk through, I cried to God. I cried to Him because I was sad. I cried to Him because there was great loss. And then, “My cry reached His ears.”
I love that our big God hears the cries of people walking through it. Another reminder that even your cries are never without hope. They are always reaching Someone who can hear.
So if you are walking through it, don’t try to climb the walls of the canyon and ignore what’s below. Walk through it. Feel it. Let it break you open and, as Ann Voskamp talks about in “The Broken Way”, let the light shine in and reach all the broken places.
When I was diagnosed with uterine cancer at 35 and before I could have surgery my boss wanted me to go on 6 weeks worth of sales trips. As I sat in an airport stall in Chicago practically hyperventilating from crying so hard I realized that I was mourning the children I would never have. It was painful and honestly some days it still is 12 years later. So I understand grief and how much it leaves it’s mark on you in so many ways. Thank you for sharing.
That’s really hard 😞 Thank you for sharing Dana.