Yesterday marked 2 months since Alli passed away. In some ways it is just unbelievable to me that we had this little girl and all of these challenges and within the blink of an eye one day that little girl and all of the challenges she faced were gone. I struggle with her legacy and my memories of her life, especially the last 11 months of it. For a while I was almost angered by any suggestion to hold on to my good memories of Alli. What good memories? I spent the last 2 years of her life diagnosing various forms of seizures, keeping track of countless medications, refilling feeding bags, sleeping on hospital couches, making friends with doctors, nurses, and therapists, what seemed like a never ending cycle of hoping things would get better…and they just never did.
I am so grateful for our trip to Raleigh this past weekend. It was a well intentioned opportunity to visit with Jason's brother and his family. I looked forward to making the trip and spending time with them. I knew Samantha would enjoy the time and attention from her cousins. There was no reason not to go. I wasn't prepared for the flood of memories that would come upon our arrival. Raleigh was the last place we took Alli before she got sick last winter. We spent Thanksgiving with Jenn, Michael, the boys, and Jenn's parents. It was a great trip. I remember talking with them about taking Alli to Memphis and the great promise that would come from working with Dr. Wheless. Alli was making strides developmentally. There was so much hope for what her future held. She stayed in the guest room with Jason and me. She was tucked in a pack and play and we had her oxygen concentrator and feeding pump in there with us. When I looked at the room this time it was hard to believe everything fit. And so I found myself sad, but grateful, for this was a happy memory we shared with Alli. I'm also grateful for the pictures we took while we were there. When I look at the family photo from that visit, it is a reminder of that happy memory. I know there will be others.
It is difficult to realize how mentally preoccupied I was. I thought I had everything together, was relaxed, and all was well. Now, as the dust settles, I realize how on edge and distracted I really was. The time we spent relaxing at night was peppered with trips up and down to give medications, refill feedings, silence the oxygen monitor. The same with my time with Samantha. We could sit and read a book or play, but only until it was time to give another medicine, etc. There is a small sense of relief in being able to relax at the end of the day and to have some uninterrupted time with Samantha, Josh, and Jason.
There is also relief in rediscovering joy and laughter. Seems odd, right? This past Christmas there was great joy in being with my siblings and niece. Unencumbered. My brother and sister are ridiculous. Anyone who has ever met them knows that. It was great to laugh with them (and at them). It had been a long time since I felt like I could truly appreciate the lighter side of things. I would shrug off phone calls with "funny stories." It was hard to find the humor in things while we had so much going on with Alli. I would go places and participate in events, but my mind and heart was always elsewhere. I feel like I am more "in the moment" now and able to appreciate the people around me and the things going on in their lives.
Ok, I hope you all are doing well. I have made some New Year's resolutions. I already need a 'do over' on some of them…yikes! It is only the 8th! Happy new year!
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