Bittersweet

bit·ter·sweet
   [adj. bit-er-sweet, bit-er-sweet; n. bit-er-sweet]
–adjective
1. both pleasant and painful or regretful: a bittersweet memory.

My life as a mom has become a constant stream of bittersweet moments. Initially these moments would catch me completely off guard. These moments would knock me off my feet, they would literally take my breath away. Now they have become an all to familiar occurrence, these moments rush by like familiar friends. I despise the bitterness but just as I start to pray to never have to experience it again I'm overcome by the sweetness.

Sanfilippo syndrome has woven itself into our lives. Peter is 2 1/2, Olivia was 2 1/2 when she was diagnosed. Over the course of the last 6 months I've watched Peter surpass Olivia in so many ways. We know several families who have multiple children with Sanfilippo syndrome. I cannot imagine how difficult it would be to watch both children slip away. We know other families who have multiple children but only one or two of their children are affected. I know that they feel that their non-affected children are able to give their child with Sanfilippo syndrome a voice. I hope that I get to that point but right now I'm stuck in this never-ending cycle of the pleasant and the painful. Sometimes I can see Olivia beginning to slip away into her own seperate world. I don't know what I would do if Peter had Sanfilippo syndrome as well but I wonder if it would be comforting to know that Olivia wasn't quite so alone. Peter is starting to struggle to find ways to interact with Olivia. He's not able to understand that she just can't quite keep up.

Olivia began speech therapy before her 2nd birthday. I was there every single time she learned a new word. every. single. time. It was a group effort. I helped my baby girl find her voice. Those words were hard won. They were precious. I also watched those words slip away, Olivia lost her voice. On a daily basis I hear Peter add new words to his ever growing vocabulary. Words I didn't teach him, words he just picks up on his own. Words I remember teaching Olivia, words I remember helping Olivia to learn over the course of several months, Peter adds to his conversation effortlessly. Overwhelmingly bitter and sweet at the same time.

We taught Olivia how to use a spoon, it took months. It was a messy business at first but we got there. It was a family effort. I remember the day Mike took a video of Olivia eating her cereal all by herself. We didn't teach Peter any of this, one day he just took the spoon out of my hand and fed himself. It was effortless. Now Peter insists on using a fork and a spoon. He feeds himself neatly (even if he does eat katsup by the spoonful), when he's finished he takes his plate to the sink. Olivia requires constant supervision when she's eating. If she's not flinging the food all over the place then she's cramming too much in her mouth. If Olivia happens to grab a spoon she waves it around and bangs the table. I bought a brand new package of infant spoons last week. Bitter and sweet.

Tonight Mike was putting Peter down while I was sitting with Olivia during her breathing treatment. Peter came out to for his goodnight kiss and hug. Instead of telling me goodnight he said "buenos noches" (goodnight in Spanish). All the ideas of having a multilingual child came rushing back. Olivia and I would watch a cartoon in Spanish once a week, she had Spanish flashcards and board books in Spanish. But when Olivia was having trouble mastering English I adjusted my expectations. I haven't tried to teach Peter any words in Spanish. Peter's growing Spanish vocabulary is growing naturally, through occasional words and phrases from Mike (and Dora and Diego). Bitter and sweet.

We spent one weekend potty training Peter. We spent months working on it with Olivia just to have our hard work slip away. I've probably changed 3 times more of Olivia's poopy diapers than I have of Peter's. Peter is really into the concept of "big" and "little" lately. He arranges his trains in order of size, he eats the big grapes first, he shares the small half of the cookie with Olivia. He was so proud to announce that Olivia is her "big sister". I remember when I was pregnant with Olivia and she was so excited to be a "big sister", now she's oblivious. Every single potty training book we picked out talked about babies wearing diapers and "big kids" wearing underwear. Peter is now a little confused about why I'm changing his Big Sister's diapers.

Sometimes I resent Peter just a bit, things just seem to come so easily for him. The very same things that I worked so hard to teach Olivia. I wonder if Olivia had not been my oldest child, if I would have known something was amiss sooner. She did meet all of her early developmental milestones but we got there together, it was a process, they were not just mastered overnight the way Peter seems to tackle them. I absolutely value Olivia's words more. Thomas Jefferson said that anything worth having was worth fighting for and we fought for the words, the skills. I'm bitter that they are gone and that Peter seems to master them so easily. Of course I am still able to appreciate the sweetness that is my darling boy but often Olivia's beautiful smile is still the sweetest treasure. Her smiling face doesn't quite erase all the bitterness but it does soften the blow a bit.