2 years and 3 months

 

Grief can rear its ugly head with a vengeance anytime and anywhere . At times I am bed bound by devastation, other times I’m overjoyed with the amount of love our family has for one another…and then there is also the awareness that you feel like you might combust into a million pieces due to anger. Not knowing how you will feel when you wake up, and what emotion will overcome you, can cause more anxiety, stress, and even a fear of falling asleep. Waking up to another 3rd has my emotions swirling like a tornado inside of my chest. 

I’m missing Bridget so DESPERATELY today. If I saw her in the distance I would literally run on water to get to her. The waves of grief feel torrential. I don’t know if it is the changing of the seasons, the milestones I know we’re missing out on, or what….but it has drug me through the mud lately. 

So many nights I’m awoken by the harsh and devastating reality that Bridget is gone. I lay awake desperately trying to speak to her, beg her to give me a sign…give me ANYTHING. Something to cling to until I’m able to hold her face again. I don’t tell many people this, but I’ve only had one dream about Bridget that I vividly recall. It was on the exact date of 6 months after her passing. In my dream, Bridget walked up to me and was perfectly healthy. She was so very happy and her speech had returned. She told me over and over that she loved me and was glad that I was her mother. Those are words I have always dreamed of hearing from her. We hugged and spent the next little bit of time just looking at one another…it felt like we were trying to memorize each other’s facial features…every little freckle. That was it….I woke up in a puddle of tears. I have begged her every day since to come back to me in a dream. I’ve heard that begging and pleading will often lead to a lack of dreams focused on that specific loved one. I don’t know if I’ll ever get to a place that I’m not pleading with her and God though. 

The last several months of my life (or let’s be honest the last two years) I could never have even thought up in my worst nightmares. I may appear to be stoic or jovial on the outside, but on the inside…I feel like a caged animal. A ping pong ball of emotions. My child. How could this be? The never ending longing to touch her again, feel her sweet fingers entangle in mine. The unrelenting questions and feelings of guilt in wondering if I did enough as Bridget’s mother. 

There are so many experiences, big, small, and daily occurrences that I wish I could share about coping as a parent of a Sanfilippo child. We spent far too many years suffering in silence in search for answers. Even now, seeing other Sanfilippo parents (or really anyone who has lost a child) absolutely shreds me. It changes you so deeply, so profoundly, that you can never return to the old you. There were days where we spent an hour cleaning up Bridget’s bed/floor/carpet before attempting to go to work while being sleep deprived. There were so many missed opportunities for Bridget, as she just wasn’t able to do the things other ‘typical’ children could do. There was shame…”Did I cause this”? There was guilt…how could our DNA do this to our child?! There was choking on finger foods, loss of speech, and the list goes on and on. 

And my point in sharing those things is not for sympathy. I share in the hope that you will be reminded of other parents and families working through difficult things. We purposely shut ourselves off from talking about our struggles to protect Bridget, but also to help ourselves cope. Never did we want to do the whole ‘poor me thing’ when no one would understand anyway unless they’d been through it. Trying to work, coach, be “on”, communicate with others, keep your marriage strong, focus on your other children…attempt to have a social life. I felt like I failed in every aspect. So it was better to just keep it to ourselves. So if you know anyone in a similar situation…reach out and check on them, it might mean more to them than you could even imagine. I had a friend once just reach out and say “I see you”, and that kept me going. 

And in the spirit of being vulnerable, there were times that I wasn’t sure if I could keep going. I knew the people around me didn’t understand. I knew that some probably secretly judged me, or even Bridget. It absolutely tore me apart most days. The feeling that my child didn’t fit the mold. It caused stress, worry, and extreme anxiety. Something that I unfortunately battle still today. 

Anxiety. The word appears to be a bit of a buzzword lately. I hear it thrown out daily for circumstances that I wouldn’t deem necessary. It’s shocking, honestly, how often I’ve heard it recently. I guess I’m more in tune to it following the events of the last couple years. It almost angers me to hear the word being used incorrectly. I KNOW the magnitude of the word…and also the lengthy process that it takes to battle those demons (unfortunately). 

Triggers are everywhere. Just the other day Michael and I went to get our taxes done. That morning I woke up with a pit in my stomach knowing that we would no longer be claiming Bridget as a dependent as she passed in the beginning of 2023. Although I understand why it has to be this way, it still wrings the air out of my chest as it goes against everything in my body to dismiss my daughter. Our family takes every opportunity imaginable to purposefully include Bridget in our day-to-day life…and we will continue to do so forever. 

So this is where I’m at…2 years and 3 months after the passing of our daughter. Struck with deep sadness, anger, anxiety, and a loss so ferocious I often feel my tears could crumble the sidewalks with how hard they fall. People wonder what it is like to lose a child…this….this is the reality. 

So today…because I can’t have her beside me, I sat and held Bridget’s hair. I haven’t done that in quite some time….but I needed to be close to her today…as close as I can get anyway. I told her everything I loved about her…all the way to the heart shaped freckle that was on her hip. 

Please remember our baby girl today. She is worth remembering now…and always.