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Day 24

Today was a day filled with more tears + fears + steroid confusion. Luke went to the local water slide park today and Lochlan thought he could go too - which was strange because yesterday he understood + knew that he couldn’t. So today, when he learned he couldn’t (he can barely walk, + he has a PICC line in that can’t get wet) he was pretty upset. Processing big emotions, yet again.



While Luke was away Lochlan decided he wanted to go to his favourite pizza place because he has “been craving their pizza for weeks”! So he and I went on a date so he could satisfy that craving. He was so happy there that he even decided to walk out of the restaurant + to the car! This was a huge win since he’s been getting carried/piggy-backed for the past few weeks. I was so proud of him, + he was too.




Later in the day he started to get upset for the impending picc dressing change that is happening at tomorrow’s appointment. I couldn’t get his mind off of it no matter how much I tried. He got mad at me but I forced him to come outside and ground for a while. He had a steroid rage fit out there. Then later we came in to try to watch a movie together + he couldn’t focus on it because of the worry for his picc. And when bedtime rolled around he was so hyperfixated on his picc that he was inconsolable. The things he said were just so unbelievably heart breaking. I am so glad Mitch and Luke weren’t here for it. Thankfully food (wild blueberries picked by the kindest woman) distracted him enough to settle in and finally calm enough to go to bed.



Spending the day as his cheerleader, + pep-talker, + verbal punching bag, + shoulder to cry on, + caregiver is exhausting yet there’s no other alternative. As a mom you simply step up when called to duty because you love your kiddos so intensely.



As I sit here I am listening to his little sniffles + uptake of breaths - remnants from major emotional release - + my heart just hurts for him. How to get him through this whole journey is a question I ask myself a million times a day + the answer always remains: one step at a time. One step forward each day until it’s all over.

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