I tried to tell Yoshi’s story to a new friend recently. We’re getting closer and she is familiar with our current situation but completely unaware of our past. We were chatting (isn’t that lovely sometimes, just chatting with friends?) and it came up – how much she didn’t know.
Once I got her fairly caught up, I realized that I had only told half of the story. I vaguely waved my hand and said, “Of course, we were also going through the whole process of diagnosing him with autism.”
We had been talking for half an hour. Thirty solid minutes of This is My Life.
Afterwards, when I had time to think (and it’s something I’ve thought about a lot since then), I realized that our story is long. It’s hard to tell because there are two completely separate stories happening at the same time: chasing the GI bleed (keeping him alive when he was very young took precedence over everything else) and tackling the autism.
When I think back to that time in our lives, even I have trouble putting the two together. I find myself thinking each piece through linearly, then remembering that there was the other thing. I struggle putting ages or dates with any of it because it was such a blur. How old was he when we did that? I could tell you that it came after something or before something else, but other pieces have faded away.
Record scratch.
That’s when the crushing weight of loss and guilt hits me. First and foremost – I have another child. Some day I will probably do an entire series of posts about siblings, but today I’m thinking about how much of Big Brother’s past that I lost. Maybe I was present for it, maybe I wasn’t. I don’t remember. I don’t remember big pieces of his past. I lost that. I can’t ever get it back.
I lost holidays, milestones, and just the everyday beautiful things that come with raising sweet little toddlers and preschoolers. I just don’t remember. My entire memory is consumed by Yoshi’s battles. I know that we celebrated holidays, of course. There are pictures throughout the years, so I know that our lives continued, despite what we were going through. I just don’t remember.
When your child is diagnosed with autism you have to give yourself time to mourn the future that you lost. When we are pregnant we all make plans for our unborn children. We do. Even if we say we don’t. We envision their beautiful little baby faces, we see them graduating from high school (with great grades, don’t lie – we all do), we plan their perfect wedding to their perfect mate. It’s what expectant moms do, while we all sit around saying that we just want a healthy baby and we’ll be happy.
But then you get this bomb dropped on you that your child is different and his future is uncertain at best, most likely difficult – either way, nothing like what you imagined. If you have good professionals helping you (doctors, therapists) one of them has already told you this, but it’s worth repeating. It’s okay to mourn the future that could have been. You should take time to mourn. It will make moving forward easier once you accept that your child’s future, your future, looks different than what you were expecting. You have to come to terms with that.
No one told me that I was going to lose my kids’ past.
I wasn’t prepared to have to mourn that. I haven’t accepted that yet. At some point I am going to have to come to terms with the fact that the only “memories” I have from their childhoods are the pictures on the walls. I can see them hanging there but it’s like having someone else tell the stories. I will be okay with it someday. Just not today.
I will be okay with it someday.
Before Yoshi was born (and our lives were flipped upside down) I started a journal of cute or funny things my oldest said that I wanted to remember. I didn’t always (okay, usually) have it with me so I would write things on scrap pieces of paper. I would then stick them in the journal with the intention of copying them over later. I, of course, never did, so the book is just full of random pieces of paper, but I’m okay with that. I always included the date (can you believe it?) and they are just little quotes of things he said – no context.
After Yoshi started speaking, I kept it up for him. I am so glad that I did. If I could invent a time machine* to do just one thing, I would go back and hug myself for creating these mementos.
I may not be able to remember our past, but at least I have a few keepsakes that make me smile. What do you do to hold on to your memories?
*My husband has different plans for the time machine.
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