September has traditionally been one of my favorite months. I met J in September. We got engaged a few Septembers later. Our Oldest was born in September. We found out we were expecting Littlest in September. My favorite season of year (Autumn) starts in September, and the weather reflects that.
September has also been one of the most difficult months for me the last few years. Littlest has had major surgery almost every September since he’s been born, and I can’t go through the month without mental pep-talks about whatever anniversary of which surgery, or MRI, or “bad news” we got in the past. My brain can’t turn off these mental anniversaries. It’s just how I’m wired. Usually I’m ok. I can cope, I can deal… I have three beautiful kids who are all so special and unique… but when we have an MRI on the exact anniversary of MRI where we got the news that Mac needed immediate decompression surgery… and the news comes back that he has an enlarged syrinx on his spine again… my breath catches and I start praying hard. Praying for strength. Praying for the ability to stay calm so Littlest doesn’t catch on to how scared Mommy really truly is. Praying that this prospective surgery won’t strip that personality I love from my child.
Every time he goes through a brain surgery, there is a risk of damage to who he is on the inside. Not that a surgery could fundamentally change the soul of my son, but it could damage his personality. I love that Red Band Society quote when Leo tells Jordi as Jordi goes into surgery to remove his leg “Your body isn’t you. Your soul is you. And they can never cut into your soul.” (I don’t think I’ll be regularly watching Red Band Society, I’m not that able to cope with children who are in a pediatric ward long term, coming through these huge life-changing experiences without good parental support etc.) It’s a good thing to remember that surgery on this outer body is not going to damage our spiritual man. Even if Littlest comes out of a major surgery with a different mental ability or personality that has been changed from damage to his brain, he is, at the core, still that beautiful person Christ died for.
As I look at scheduling the diagnostics that will hopefully help us figure out which surgery he needs (shunt revision, spinal de-tethering, or spinal decompression), I’m praying for REALLY clear results, which Littlest’s body has generally been pretty good at giving us. Since Dr. W is no longer at CHCC and Dr. M is retiring, we’re meeting with a new Neuro. I am really praying that we can develop a similar rapport with this new doctor. I miss Dr. W. She has been the one doctor that has been consistently optimistic about Littlest’s long-term prognosis. Even when she was doing a never before done surgery, she told us that *our* fighting for him was just as vital as *his* fight to live. She has kept in touch even after leaving CHCC, which is a huge blessing to me since I really felt like she became honorary family. Losing touch with her wasn’t an option.
As I go through the rest of this month, I’m going to make a conscious effort to live each day with joy, as Littlest is so good at doing, because each day with my family is precious.
