Friday, November 12, 2010

Mary~7 weeks out

Sympathy Pains

Phillip texted us, and asked, ‘Has Mary had some pretty bad pain the last hour?’ We gave each other that look~Whoa. Yes! She had been struggling that whole day with pain. Meds wouldn’t dent it. She couldn’t sleep. Phillip said, ‘I’ve had a bad headache for the last hour. I kept thinking Mary might be in pain too.’
When Mary was in tremendous pain for many days without relief, a friend sent this wonderful idea:
“I wish we could all take shifts to absorb pain for you... I'd sign up now if it was possible.”
All of you did take some of her burden on your shoulders and in your hearts. In so many ways. Tears~prayers~texts~emails~cards~packages~messages. Mary is still amazed even today, to hear about how many people were and are still cheering her on.

My Summer Vacation
One Sunday afternoon while Mary was in the ICU, Brad and the girls took over the 'Mary shifts.’ I came home with my sons, Phillip and Thomas. It was a beautiful summer day! Perfect blue skies with a few white, puffy, ‘Toy Story’ clouds. The boys took me out our backyard gate onto Salmon Creek. They took me on a long leisurely canoe ride. Thomas paddled in front and Phillip in the back. I sat in the middle of my 2 strong sons and had the best 90 minutes of my entire summer! It was so peaceful. There was no one in sight. We had relaxed, fun conversations. They showed me all kinds of great scenes along the creek. It felt so refreshing to have personal time with them, in such a beautiful place. We looked up at the house from the water and Phillip said, “I love being home, Mom!”
My sons might not realize how secure they made me feel that day. I felt as though all my cares and worries were gone. I felt as though I had a real vacation, far away.

view of our home from the water



Mary’s Nana and Grandpa wanted to come up the day we called about Mary. They slept with their suitcase at the foot of their bed for that whole week. Painfully, we put them off until a week in July. I knew that I would need full time help when Brad and Thomas would be away at scout camp. I was right! Nana slept right in the room next to Mary's. I got some great sleep that week! She was also with us when Mary had some disappointing news from the Dr. She truly needed both Nana and myself to help her get through it.
Three years ago, my parents moved less than a mile from our house. Brilliant move! They have been here watering plants, bringing food, doing errands and checking in. Sometimes, they follow a prompting and just stop by. One such day last week, they came in from watering. Mary started a difficult conversation about the looming possibility of not returning to BYU this fall. I usually am the only one with Mary when this topic heats up. But this time, I slipped away to rotate laundry and let her grandparents help her through the painful conversation.
It is such a blessing that Mary has 4 grandparents alive and well. They are here to guide, direct and love her along with us. Brad recently summed it all up with his parents, ‘This has been the toughest parenting we’ve done so far.’
                        A house needs a grandma in it.  ~Louisa May Alcott

Thomas, Nana & Mary

Mary & Grandpa Bigelow

Mary & Grandma Bigelow
Patience is a Virtue
Today we were about to pull away from a parking spot when my drink spilled in the new car on the shifter and into my lap. It was a ‘hole in the wall’ place with no cars waiting nearby. Mary hopped out to get a towel from the trunk. I guess our pause to clean up was too long. An impatient Jeep driver laid on his horn and revved his engine as if to say ‘Move it or I’m running you over!’  He had 30 feet of exit space and no one behind him! Seriously? Wow.
I have been striving to encourage Mary to have patience with herself and every step of this ordeal. But ultimately, I am learning of it’s value just as much as she is. Mary had a really tough 10 days during the ‘earthquake vision’ cycle. Two inspired men from church gave her a blessing one night when Brad was away at scout camp.
In it, Mary was counseled to practice patience. As she does, she will look back and see great progress made. Many times that next week, I would need to remind her of that promise and encourage her to be patient. The more patient she became, the more progress she made. A close friend gave Mary an article about this when she needed it most:
‘The lessons we learn from patience will cultivate our character, lift our lives and heighten our happiness.’  Dieter F. Uchtdorf

When E.F. Hutton speaks, everyone listens!
When Mary says, ‘Mom~there is something I have to tell you’---I listen! She is so in tune with everything right now. It doesn’t matter if it’s a reflection on what happened the day before, something she has finally understood, or what sounds good to eat! I am all ears. *I keep telling her that if she has any great stock tips, please, let me know!
That whole week when she was struggling with vision, heartburn, no appetite and other hemorrhage induced symptoms, she was never more sincere. She would consistently let me know that she was sure that even though this was tough, it was all a good sign. She felt so strongly that when she had her next CT scan it would show her hemorrhage was all gone.
It had only been 28 days. I listened and I wondered if it could be true? The night before her next CT scan she insisted again, ‘Mom, I have to tell you something. My blood clot~is gone.’ You know what? I believed her.
If you want some insight about yourself or anything else, for that matter, spend some time around Mary Goodwin!

Mary at home
Spoiler Alert!
I have learned that my #1 job until Mary is 100% recovered, is to be her advocate. Everything else has to wait. I had to become ‘Mother Bear’ to get some needed attention for our brain trauma patient stuck here at home. Once Dr. Shanno found out how long she had endured this latest round of symptoms, he called us. It was the same night she received that blessing here at home. He asked us to come see him in the morning and ordered a CT scan.
Mary was so excited! She could hardly wait for the results. When Dr. Shanno walked in the room he calmly declared, ‘The blood clot is nearly gone.’ Mary practically jumped up with joy and tears! Nana and I were in disbelief! He put the scan up on the board. It was unbelievable. 
Mary said, ‘Does this mean I can have the CyberKnife surgery sooner?’ ‘Yes it does.’ You would have thought we were on our way to Hawaii. Pure joy.  As we walked out to the car, Mary declared, ‘I am on cloud 12!’

Day 33 on the left (hemorrhage is nearly gone)   Day 7 on the right (massive hemorrhage takes up space; mid-line of brain is off center) *CT is a view from base of skull up; hemorrhage is actually in the left temporal lobe

What are the odds?
Dr. Shanno has been more blunt with me lately giving me the plain truth about what Mary has been through.
An AVM is flat out super rare. Less than 1% of the population is born with an AVM. Less than 1% of those people ever have that AVM bleed. *Brad and Phillip did the math and came up with some crazy statistic. Ask them!
When an AVM bleeds, 10% of those people die. 30% are left with a permanent disability.
Mary had a massive hemorrhage in her left temporal lobe, due to an AVM bleed. Mary could have died. Mary could have slipped into a coma. 
On day 3, Mary ‘woke up’ and spoke for 7 hours straight. She came home on day 14. Her hemorrhage was resorbed by day 33. She only has a headache about once every other day now. For the past 2 weeks, she rarely has shaky vision. She has beat some very impressive odds! Maybe she should buy a lottery ticket…

Hot Tub Time Machine
I am so grateful that Mary had this in the United States, with health insurance, and with the incredible technology and skilled physicians of today. They let me be in the room with Mary last week during her CT Angiogram. They put the weighted protective apron on me and I stood near her feet. She had an IV in her arm and they administered about 1 cup of contrast dye into the vein. This special scan will give the CyberKnife surgeon a 3-D film of her brain and AVM. 
The giant scan machine looked like a hot tub, on its side. The round center was hollow. Mary was on a narrow bed like a diving board into the up-ended ‘hot tub.’  Because they take pictures that view the brain in segments, like slices of bread, the bed she was on would move. It would take turns moving her in to the center of the machine or out. It lasted about 4 minutes. For the last few seconds, she was told to not breathe or swallow. She was super calm and relaxed.
It was the coolest thing ever! I wanted so bad to snap a photo, but I refrained. Her technician has done this for 20 years. She marveled at Mary’s condition considering what she has been through.

Days are like weeks and weeks are like days…
I was filling out a form and I asked the cashier, Is it July 5th? No, it’s the 15th. What?! Mary and I both cannot believe how much has happened in 6 weeks. Mary says, ‘Mom it seems like it all happened so many months ago.’
I feel no pressure regarding time or the calendar. I have felt peace and confidence that Mary will fully heal at the rate that is meant for her. This has helped me to be patient and allowed her to feel confident.
Mary continues to meet with her speech therapist working on all kinds of cool cognitive exercises. I take notes, but I also try to follow along and do the exercises in my head and I can’t!
*Ask her to recite a 12 word sentence backwards. Or do a 3 digit multiplication problem out loud, with no paper! Or translate a random paragraph into French. Repeat 4 sets of 2 digit numbers and then list them backwards.
Mary was finally given the ok to return to cardio workouts at the gym. Happy girl! I guess that means I get to work out too...
She meets her CyberKnife surgeon, Dr. Modha, on August 12. Until then, we will practice more patience

No comments:

Post a Comment