A few days ago, I posted on my personal Facebook about this last 16 months of crazy medical issues Lindsay has been having (coming right on the heels of my own difficult battles with Crohn’s) and coming out about her diagnosis, why she hid it, and how we’ve both finally come to accept it. The goal was to let so many friends and family, who knew there were issues but had no clue of the severity, about her life so that they could help pull her out of her personal prison. Thousands of Facebook shares and dollars I never implied we wanted later… I just can’t believe the outpouring of love we’ve received.
We have extremely low lows a lot of the time. Most of the time for 2014, in fact. However, the bits of beauty that we do get to experience as a family burst and shine like fireworks. It’s the kind of warmth that you feel from the top of your head to the tip of your toenails. It’s more real than any other feeling we feel. As low as the lows get, these highs are almost too high to process, if that makes sense. It’s as if we get a shot of gratitude, love, and reflection all in one family gathering. Sometimes it’s only a 20 minute window amidst 5 days of being apart. Other times, we cry tears of joy after getting a full day with each other.
These last 10 days have been particularly tough. Lindsay’s parents, who’ve rescued us time and time again by doing things like flying out and staying with us for a month or, in this case, getting fed up with insurance repeatedly turning down a promising procedure (that her neurologist insists she have) to the point of calling our doctor’s office behind our back, setting up the appointment, and arranging payment. We simply get a text from them saying “you have an appointment at the end of the month!”
That’s just how they are :)
Lindsay’s neurologist is the physician who got Botox injections approved through the FDA for Chronic Migraine. He’s the leading expert and has administered it medically more than any other physician. We got lucky with our referral to him. At the end of June, he gave Lindsay 31 injections of botox in her neck, skull, temples… all over. At the end of July, Lindsay saw incredible progress. She had migraines every second of each day but I believe just 9 attack days in July. And ttack days that weren’t so intense that I had to keep Clive away from her, to boot (it’s not good for a 3 year old to see his mother writing in pain; unable to respond properly to his concern). She even took Clive for one entire day — all by herself — and they swooned over each other every second.
It was magical.
On August 9th, however, the botox wore off and she’s been in a painful attack ever since. It’s like being forced into running a marathon in your off season; we’re very out of shape, at the moment. Our next appointment for botox is the end of September. It feels too far for us to make it — but I know we will. And in the midst of all the badness, we will find the goodness and focus on it like a laser beam during the moments where Lindsay can focus :)
These last 10 days have certainly been unkind; but it’s been so much easier to squeeze good out of the bad given the level of support we’ve received. My first job, providing for my family and protecting them from all the harm that I am able, has been made much easier because of what so many of you have done. So thank you to all of you who’ve helped my wife feel less alone. That has helped me immensely. If you’d like to encourage her more regularly, here’s her instagram. Often times, that’s her link to the real world and other people. And these last few days with so much support have been incredible for her :)
This was a great day. We took Clive to see seals and the tide pools at La Jolla for the first time. Lindsay had enough ability to focus that she was able to shoot for the first time in a good while. So much gratitude for the time we spent together this day :)