Saturday, May 17, 2014


Being a mom is the hardest job you will ever love. That is the best quote I've heard lately...or ever. It's true....being a mama is hard. It's physically hard and it's emotionally hard. But I love it. I wouldn't be doing anything else. I love it.

Having a child with medical and developmental issues is hard. So hard. I wouldn't change Tuba and the way he is but I would take the seizures away. 

The years that his seizures were really bad have scarred me. Deeply. I feel like I have PTSD. I do not say that lightly. I actually googled PTSD to see if what I experience could be considered PTSD. After reading a bit I don't think I actually have the clinical definition. But....I have scars. I have fears and they flare up sometimes. 

In the past year I have experienced a few times when I knew that I was overreacting. When faced with scheduling Tuba's MRI I freaked out. Rationally I knew that it was a bit silly to be so scared. I completely melted down. Crying....sobbing really. Then Cam slowly and calmly talks me "down from the edge". He is my rock. My piece of calm and sanity when I feel the wave of fear coming.

After my release of crying I mentally go through all the "worst case" scenarios I can come up with. Really not helpful but it's what my brain does. After that I soldier on. Basically I put a lid back on my jar of fears and move forward.

But the jar is always there. The fear is always with me. 

Tuba's hospital stay last week burst the lid off my "jar of fears", the one buried deep inside me. On the first day after Tuba got his head all wrapped up in gauze I leaned over and kissed him on his head. Whoosh! A huge wave of grief swept over me as I inhaled the scent of the gauze and tape. It took me right back to his previous in house EEG study. A very dark and frightening time when his seizures were out of control. He was having 50-100 seizures a day and we couldn't find any relief. 

Other things like the smell of the hand soap....the sound of the hospital door closing....the anxiety of waiting for the Dr. to come in on rounds....all of them triggers to my fear. I got teary quite a few times over the three days. I knew it wasn't because of what was happening at that moment but because of the things in the past.

On Wednesday when the Dr. told me that indeed Tuba was having seizures I crumbled. I had held a little glimmer of hope and excitement. Realistically I knew that he is still doing great. In fact the Dr. said those exact words. He IS doing so well.....especially when you look at the past. The VNS has been a miracle to stop the seizures. 

I think that I have so much grief stuffed down inside of me that I can only process it a bit at a time. When I'm scared it seeps out. After the Dr. left I texted Cam. I needed the voice of reason. He called me right away. He said all the right things. He told me that it is our fear of losing seizure control that drives our worry. I felt better but the damn has been cracked. 

I cried off and on all day after getting home. I was tired too which only makes it worse. I've gone through this enough times to know the alarm bells of fear would subside.

By the next day after a good night's sleep I did feel better. I had gotten the lid back on the jar one more time.


  1. Thank you for letting your readers get a tiny light shed on the darkest corner of your life. My hope for you is that writing it out helps. We all have jars with lids - but so much better to have a jar that can be opened (to release the pressure) than a sealed can that can only explode. All who know Tuba understand the complications (even if they didn't/don't know the reasons) and love him. That doesn't make it easy or right but probably makes it bearable and even provides moments of joy. Love you and love Cam and love your family.

  2. My heart is sad for you. If there is anything I can do make life better please let me know.
    I love you

  3. Oh Becky! So sad when I read those inner thoughts and there is really nothing any of us parents can do to help you with these feelings. I hope you take comfort in knowing how much you are loved by all of us. Dad and I love you both too.



Related Posts Plugin for WordPress, Blogger...