On tough days



Anticipatory grief can sneak up on you without a moments notice. It’s like a literal stab of pain in your heart, the air being knocked out of your lungs, and your eyes burning by the onset of your fast flowing tears.


The other day I made chili for supper. Luke and Bridget love to chow down on it. We were sitting around the table and I paused for a moment to see if either one needed anything. In the hustle and bustle of dinner I was taken aback by my observations. 


We have become so quick to adjust to Bridget’s various needs that sometimes it is shocking to sit back and internalize the help that she requires. While my 2 1/2 year old was busy popping in some blueberries and scooping himself some chili, I was spoon feeding my 8 year old her dinner. 


It was like a slap in the face. Is this real life?! This is not the typical progression of life. My thoughts and emotions have been riddled with how unfair life is for Bridget. Do Michael and I have daily hurdles that we have to overcome due to her syndrome....yes. But who is the one that ultimately suffers....Bridget. I often wonder if she is aware that she is changing. She’s such a tough little girl that she continues on day after day, but I am desperate to know what goes on in her brain. 


Not only have we adapted to Bridget and her constant changes, but Luke must adapt alongside us. He is such a fantastic brother. Always checking in on her, bringing her things that she needs, helping with her glasses, etc. And now Greta. Never will she be able to have a typical relationship with her older sister. It worries me for the day that we will have a difficult conversation with the kids regarding Bridget. I know they will eventually have questions for us. I don’t know how we will go about answering them. To be honest this is something we haven’t devoted much thought to yet. These are the things that keep me up at night.


I don’t have any real “updates” to share. Just the inner thoughts of a parent struggling to cope with the reality of what is to come for their child. I may be frustrated that I have to hand feed my oldest child, change more diapers in my household weekly than most people change in a lifetime, and survive mainly on caffeine...but I’m still working to find the positives along the way. 


Bridget has had a long streak of being incredibly happy, which makes it all worth it. Luke and Greta have added an alternative vibe of parenting for us that we have longed for. And also, I’m grateful to my best friend, Michael, because this journey has brought us closer than I could have ever hoped for (which isn’t the case with most couples with terminally ill children).


On the days that anticipatory grief rears it’s ugly head...I know I can keep those positives front and center, even if I have to  cry it out before being able to do so. 


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