We had a really wonderful Easter weekend. My dad and Bill's mom came up on Saturday and Gwendolyn loved it. She kept looking back and forth at them, listening to everything everyone was saying, and seemed extra content to have both Gramma and GrandPa around her. We had fun doing an Easter egg hunt around the house and Gwendolyn completely adored this. We hid the colorful eggs all over the house in high up places so she could see them as we held her — in candles, on the mantle, on windowsills — and her eyes darted all around for them. When she spied one, her eyes would stop and her body language completely changed — excited! This is a game we can play over and over again. We also had the opportunity to meet the Easter Bunny…yes, the real live Easter Bunny. Gwendolyn was dubious, but curious; making sure Bill and I were close by, but watching every move Mr. Bunny made. And, of course, she adored her special Easter baskets filled with treasures galore.
The highlight of the weekend for me was getting to have a “normal” family experience. On Sunday we took Gwendolyn to our church, Trinity Episcopal. Bill and I were married at Trinity and during that time I naturally envisioned our future together. I was excited to start a new chapter with an incredible man and I imagined us bringing our children to Trinity and I just assumed I would escort my precocious little two year old through services, including navigating meltdowns. But attending church has been tricky because there are certain places people tend to go even when they are sick — the grocery store, the drug store, and, yes, church (you know you've heard the coughing and sneezing and sniffling on Sunday mornings). We attempted taking Gwendolyn one Christmas and while that was a very meaningful time, she was a bit overwhelmed (we were too) and we ended up leaving early. But this Sunday, Easter, was wonderful.
Not only was everyone at Trinity super accommodating, reserving a special out of the way spot for us near a power outlet, but they continued to check in with us as the crowds grew to make sure we were comfortable. Crowded places are difficult and our anxiety grows as people inch closer and their help made all the difference. Gwendolyn was taking it all in, but definitely felt a bit vulnerable — new smells, lots of people, high ceilings, and we were right under the organ, which shocked her just a little each time. At one point she started fussing the toddler irritated fuss that could go either way: comforted or major meltdown. I decided to take her out of her stroller to sooth her, pat her bottom, rub her back, and let her rest her head on my chest. She completely relaxed in my arms — so much so that she fell asleep. My heart practically burst. She hasn't been comfortable sitting upright like that without choking since she was a baby. I loved just getting to be a normal mom comforting my sweet two year old (in her darling Easter outfit) — exactly what I imagined — sitting together as a family, Bill by my side, my dad and Bill's mom next to us, and Gwendolyn in my lap. A family. Just a normal family.
As we've written about before, there are those certain things, those visions about being a parent, that we hold on to. Bill and I rarely talk about them, or dwell on them, heck some of them we aren't even fully aware of — but when they happen, when we are in the midst of experiencing that precious parent moment, Bill and I both consciously savor those minutes. We both have a heightened sense of gratitude to be in the midst of an experience with our daughter we thought we may never have. When Gwendolyn was diagnosed and given “a few months” to live, that list of things we thought we'd do as parents was cut drastically short…actually it was pretty much tossed out the window. SMA changes everything. It sometimes hinders experiences altogether and it certainly means they won't be typical. But, if we focus on the a-typical nature of our situation (and we do sometimes), we often miss those precious “normal” parent moments. I'm so glad we got to hold on to this one.
