I took Jamie and Clare to our local Children's Museum today. We have a membership there, but it's been a while since we've gone, having spent the nice weather days outside. Since it was raining this morning on our way to swim class, I told Jamie we would go to the Children's Museum after swim. Even though the sun came out later, Jamie was still all for the museum. We initially received a membership courtesy of my dad last year. It came in handy countless times during Clare's hospitalizations since the membership got us into the Boston Children's Museum for free as well. Jamie's routine during Clare's caths was that one (or both) of my sisters would take him to the museum while the rest of the family did the hospital vigil. So today, on the way to the museum, Jamie started talking about going to the big museum with Auntie Erin and Auntie Chrissy. He asked when they were going to do that again. Our conversation brought back all those hospital memories.
This is our year of first anniversaries, and the big one is coming up in less than 3 weeks - the first anniversary of Clare's open heart surgery. It's hard to believe a year has gone by already. As I was driving down to the museum today, I was overwhelmed with the memories of the sights, smells, and sounds of Hospital Land. We lived and breathed Hospital Land for so long that now that we've been out of it for almost eight months, I miss it. Yes, I actually miss it. There was something so familiar about the routine (sad, though, that it became routine). I miss the hospital food, which actually was quite tasty unless you had to eat it for two weeks straight. I miss walking the halls from our room to the playroom to the computer room to the elevator to the little kitchen which was always stocked with pudding, graham crackers, and Sprite. I miss the comfort of knowing that Clare was hooked up to a gazillion monitors so we always knew exactly what was going on in her heart. I know this sounds strange, warped, or maybe just hormonal, but does this sound familiar to anyone out there with kids who have undergone multiple hospitalizations? I feel like I am having an identity crisis. Sometimes I look back at last year and think, was that really us? Did we really go through that? Because usually in our day-to-day living, I don't think about it at all. I remember those feelings in the first few weeks after Clare's diagnosis, but before she started having caths - I would forget about her heart defects and Williams Syndrome, until the phone rang from the doctor's office. Lately, I've been in that little pretend world again, probably because we were doctor-free for the majority of the summer. Which is a nice place to be sometimes! I forget about all that worry, anxiety, and restless pacing of last year. So why do I miss it? I have no idea. I have to think it's that same phenomenon that happens to people who are sick for so long or live with a disability for so long, that when it is corrected or healed, they feel like they have lost their identity. I used to wear glasses and contacts. I had the absolute worst vision. Almost 6 years ago, I had Lasik surgery done on my eyes and have been corrective lenses-free since then. But for those first weeks and months after my surgery, I still reached for my glasses every morning. I thought it was so weird that I could see clearly by just opening my eyes. I missed my routine of cleaning my contacts. Bad eyesight was just such a part of me that once it was gone, I felt like I was missing something. That's what I relate this to. Clare's hospitalizations were such a part of her first year of life that once they were over, it felt like something was missing.
This IS NOT my identity. This IS NOT Clare's identity. But it did define us for a little while. Or at least was a huge part of who we were and how we lived. I am hopeful that that part of our life and especially Clare's life is over for now. I know Clare's heart procedures aren't over (especially with the dreaded sedated echo looming in a few weeks), but I am hopeful that we're over the worst of it.