Grief comes in waves and can splash you right in the face when you least expect it.
Moments of sadness can appear at any given, random moment. How do you deal with grief when it comes for you?
Life, like grief, isn’t always linear.
I had my first miscarriage in 2016. I felt betrayed by my own body.
The sadness plagued me until I became pregnant with my first child, Noah.
Those nine months felt like the longest days of my life- always worrying something would go wrong. I was on the edge of my seat during every appointment, ultrasound, or even conversation centered around my pregnancy.
On June 17, 2017, my baby boy was born. He brought me so much joy and I absolutely knew that I wanted to grow my family.
I became pregnant again in the summer of 2019. I jokingly (but also not) said to my husband, “I have this strange feeling I am pregnant with twins.”
He chuckled. Statistically, the odds were stacked against me- no known family history of twins, no IVF, just plain old luck; and mother’s instinct.
We arrived to my 7 week appointment. I said to the doctor…”Are there two in there, because I think there are two in there…?”
She curled up her lip, half smiled, and said….. “Hmm..why do you ask that…because…yes, there are definitely two babies in there!”
It was only two minutes that had gone by, but it seemed like almost an hour had passed while utter silence filled the room.
We were in absolute shock.
We racked our brains around this new idea of not only introducing another baby into our family, but two more at the same time.
A Quick Escape.
We decided to get away for a few days and escape to the shore, thinking this would be one of our last beach trips as a family of three.
We trekked down to the beach, on one of the hottest days that summer. We found a spot, unloaded our gear, and dug our toes in the sand. I remember how much equipment we had for just the three of us, and started to panic about how much more would be added with our growing family.
We sat there for about an hour; alternating between cooling off by the water and returning to our spot. There was no physical indication when we were there, but I suddenly had an overwhelming feeling that something wasn’t quite right. I brushed it off and tried to enjoy myself anyway.
Fast forward a few weeks later, I arrived to my next prenatal appointment- super excited to see my babies growing big and strong! There is nothing sweeter than hearing the heartbeats of life growing inside you.
I looked up and saw the nurse squinting her eyes towards the machine and…there it was again. That gut wrenching, stomach in knots, feeling.
The doctor confirmed that I did, in fact, lose one of the babies… “a vanishing twin.”
Sounds almost magical…poof-presto- magic. But no, it was anything but that.
I was suddenly transported back in time. I remembered that feeling when I had miscarried the first time. My husband was eager to come to the appointment, but figured it was a routine one. I called him and I didn’t even need to say a word. He knew. Drew raced from work to be by my side.
“There is still a healthy baby in there…” the doctor told me. Believe me, I knew it was a blessing to still have a healthy heartbeat fluttering on the monitor. But, it was still a loss.
I felt, again, my body had failed me.
My daughter was born right before the world shut down. Covid-19 became a global concern, while my main focus was on my newborn, Hailey. I saw her for a split second before they took her into the NICU, due to her difficult and frightening entrance.
In the moment when I saw her before they swept her away, I knew… I lay in my hospital bed, sore and sedated.
I spent days asking every nurse if they agreed with me. Was there something they missed at my ultrasound appointments? The doctor gave me a sedative to calm my nerves and fears. I was told it was just my hormones talking, and she was perfectly fine.
When we brought her home, I was still convinced that I needed answers. I begged my entire family and some of my closest friends to believe me, to see what I saw. I searched the web endlessly and diagnosed her with anything that stuck, but I could not find what I was looking for.
She didn’t quite fit any mold.
I went from doctor to doctor, pleading with them to find an answer for me. Most of the visits ended in the same way. I felt like I was being brushed off and was told to just give her more time.
I finally took her to a geneticist. He barely examined her, gave her a quick look, and diagnosed her on the spot. I am 100% sure that your daughter has Achondroplasia (Dwarfism), he said with extreme confidence. Just wait for the blood work, it will only confirm that I am right. Tears streamed down my face, as he watched each drop fall on top of Hailey’s head, with a blank stare and a seemingly aloof attitude. Just go home and do some research about your daughter and what her life will look like. So that is what I did.
I joined Facebook groups, looked up different therapies to help her gain strength, spoke with parents, met a dear mama who sent me poems, checked in with me daily, and shared her own journey with me. I became engrossed in what she would need to be successful…accepted. I already knew she would be loved to the end of the earth.
Mommy knows best…
I spent hours online. I studied every inch of her. I compared her to other children. I studied myself. I studied my son, my husband. She didn’t quite fit this diagnosis either.
I sought another opinion.
I took Hailey to a neurologist who was thorough, kind, and to be honest, one of the few doctors who listened to me…who really listened to me. After several tests, she called and asked us to come into the office. My heart fluttered and my eyes welled up. This was it.
I arrived, already soaked with my own salty tears. I knew that my fears were about to be confirmed.
I didn’t hear everything she said. Rare…JORDAN’S SYNDROME…random mutation…never heard of it…Facebook support group…30 others diagnosed in the United States.
I drove home, somehow. I made it in one piece. I called some family and a few close friends to share our news.
I sent a text to one of the mothers I met in the process. I told her how rare Hailey’s syndrome was. I will never forget what she wrote back. How special is that.Her kindness and friendship has been by my side ever since.
It was October 22, 2020. Hailey was a few days shy of turning 8 months old. That date I will always remember. That day I lost something. I grieved a loss. The loss of the typical baby girl I had once imagined. I grieved for myself, I grieved for her. I grieved.
“This is the part where you let go of what you thought would be and adjust to what is.”
Silly, I know, but this statement came from the show “This is Us…” and although it had a different context…it allowed me to start the healing process. My grief will not always exist, but the next step I need to take, is acceptance. Those steps I walk will not be alone. I will hold Hailey’s hand the entire time.
Please visit Jordan’s Guardians Angels to learn more about her rare syndrome and how you can help spread awareness!