Apr 22

Apr 22 Two girls, one dress

Well, I kicked off 40 in style. Miguel surprised me with a family trip to Puerto Rico and it was absolutely delightful to drink in the warmth, Vitamin D and margaritas. Admittedly, it was a shock to the system to remember what it is like to vacation travel with a three year old. Jackson, being nine and having inherited Mother Theresa’s moral compass, hasn’t required constant adult supervision in years. Adelaide did of course, but, you know, to stop seizures and make sure she was still breathing - not to make sure she didn’t run off with strangers or drown. Strawbaby is friendly, fearless and has zero concept of stranger danger - basically I have to watch her as closely as she watches me when I’m putting away groceries, showering or going to the bathroom.

Our life has certainly been made a little more wild and a lot more exciting by Strawbaby’s addition. But that’s what three year olds are supposed to do. They are not supposed to spend a quarter of their life in the hospital or be in hospice. Since Strawbaby turned three I have had to make a concerted effort to not focus on all that she is capable of - or rather - all that Adelaide missed out on. Because Adelaide was three when she passed, the parallels can be exceedingly difficult to ignore. I see it in the toys Strawbaby plays with that Adelaide never could or the way she destroys a cupcake that Adelaide could only taste. This week it became particularly poignant when she wore one of Adelaide’s old dresses.

When Adelaide passed I gave away nearly all of her clothes. I kept a few favorites for a memory box - but the rest were given to family and friends. I loved when they would send me pictures of their children wearing them. Even if the child had no idea the significance, the parent did and it felt special that Adelaide was being remembered in that way. Then one of those friends reached out and offered to send some of the clothes back to me for Strawbaby. Something turned in my stomach but I ignored it and accepted thinking that it was always nice to have more kids clothes.

It was a memory rush to see the clothes again after all these years. I remembered them all so specifically. When you have a child for whom you can’t buy toys, they end up with a lot of clothes. I loved dressing Adelaide and doing her hair. Who knows if she liked the style that was chosen for her - I sort of envisioned that if she could have dressed herself she would have preferred combat boots and a camoflauge tutu. I digress. Anyway, I found myself hesitantly tucking the clothes into Strawbaby’s drawer - but why was I so unsure of this? Shouldn’t it be special for Strawbaby to wear Adelaide’s clothes the same way it had been for me to see other children in them?

The next day Strawbaby picked out one of the new dresses: navy blue cotton with a ladybug print. One of the last ones I had bought for Adelaide. It had been perfect for my Adelaideybug, comfy with easy access to her g-tube and on brand. But on Strawbaby it was just another dress. It didn’t mean anything to her, nor should it! Though right around the time she was throwing a tantrum because we were out of string cheese I definitely had to stop myself from screaming something like, “you don’t deserve to wear that dress!” But I definitely thought it. Which is irrational and crazy, I know.

I LOVE Strawbaby. She is not Adelaide, nor do I want her to be, nor should she be. It’s just that seeing Strawbaby in Adelaide’s clothes is such a vivid reminder of the life I had dreamed of for Adelaide. The life before seizures wracked her brain and her mast cells destroyed her body. Eventually, Strawbaby will turn four and then the direct age comparisons will stop. I’m sure I will still struggle with the fact that Adelaide was cheated of the experiences and life that Strawbaby will inevitably have - that Strawbaby rightfully deserves to have. But hopefully, this particular weight will ease.

I’m trying to turn these painfully sour feelings over in my mind into a sweet recognition instead. I can - and am - grateful that I get another chance to navigate this parenthood journey with a healthy child. Truly, I am. AND I can be sad, angry and frustrated that Adelaide and I weren’t able to enjoy the same journey together for longer and in a less stressful and heartbreaking kind of way. It’s a lot of emotions for sure, so maybe for now the Adelaide clothes head to the memory box and Strawbaby can be her own person in her own clothes. Her own preferred sparkly, fluffy and oh so girly clothes while screaming and running with wild abandon into the ocean as Miguel and I chase her down carrying her life vest behind her.