My life changed forever, 20 years ago today.

Somehow 20 days have gone by and I haven’t posted. 20 days, 20 years, time moves so quickly and we can never get it back.

20 years ago this weekend Tiara was diagnosed with Tuberous Sclerosis. I remember sitting in the blue vinyl chair at CHOC watching the eeg tech perform the first of many eeg’s on Tiara. As I watched him I could tell something was wrong. He finished the test in 10 minutes which seemed really fast. How could he get that much information on her brain waves in only ten minutes? Well, I later learned because all 10 minutes showed abnormal brain waves. There wasn’t a second in that first test that showed a normal pattern of brain waves. As he packed up his equipment and removed the leads from Tiaras head I asked him: “So how does everything look?”

tech: He briefly looked me in the eye and then quickly averted his gaze and answered, “I’m only a tech, I’m not allowed to give you any information. You will have to wait until the Doctor reviews the results and gets back to you.”

That seemed funny, but I didn’t push him for more information. Once he finished packing up his equipment and left us alone, the neurologist came into our room within 10 minutes. He then declared that Tiara was having infantile spasm seizures which were causing constant abnormal brain activity. She was then taken for a CT scan of the brain and an ultrasound of the heart to confirm his suspicion that she had Tuberous Sclerosis. Once Lou and I received a brief explanation of what Tuberous Sclerosis was, I sobbed hysterically and kept repeating over and over: “everything is different, our lives will never be the same.” Lou thought I was exaggerating and kept trying to calm me but I knew in my heart, life would always be different from that moment on.

As I sat in that hospital room, 20 Memorial Days ago, I wasn’t focused on the men and women who lost their lives defending our country. I was thinking about keeping my own child alive.

I was able to help keep Tiara alive for 16 years which was a pretty incredible accomplishment, despite all she endured. It was the hardest 16 years of my life, BUT I wouldn’t trade them for anything. Tiara made me a better version of myself. Taking care of Tiara taught me more lessons about life than I could ever imagine needing to learn.

She taught me to be fearless in fighting to get her the care she needed and deserved. She taught me more patience than I thought humanly possible. She taught me to never give up and lead with kindness and compassion, not judgement. She made me a better Mom and a better person. Without her, I don’t know who I would be today and I’m not sure if I would be proud of that person? Because of Tiara, I could die today and feel proud of the life I have lived. That is a huge gift and I am so grateful she chose me to be her Mom 20 years ago.

And how does it feel to have lost her? It’s hard to describe because I don’t really think about her being gone. She’s not really gone, she’s just not living with us. I feel her everywhere and when she is extra close to me, that’s when the tears flow. My heart can feel her spirit. Louie and I were talking about her yesterday and tears just started rolling down my face. She was close and I knew it.

So my hope is, that all the families who have lost a family member because of their service in the military, feel as I do. Proud and grateful that their family member was brave enough to enlist and serve. Their service to our country changed lives in more ways than we will ever know.

So thank you to all who have served and lost their lives for all of us. Sending love, blessings and gratitude to all the military families in our country.

xoxo tiffani