‘Mom. It feels like June 19 all over again.’
We all thought Mary would be ready to attend church this past Sunday. On the way to church, she, Phillip and Jessica even joked about her condition. As we walked in, she expressed a little nervousness about seeing a lot of people. We ‘flanked’ her on all sides and quickly found a pew.
If you know Mary, she can be a good ‘actress.’ She tried to tough it out the whole meeting. I watched her every move. She closed her eyes a lot. (Turns out she was praying to feel better in those moments). She was having vision problems~it seemed like everything was bouncing around. She was in pain. She could not focus on any of the words. She doesn’t remember anything that was said.
After 40 minutes, we moved to the quiet foyer. But after a few visits with passersby, she had her head in hands, some anxious tears and she could not speak correctly. A friend raced us home. The florescent lighting, the loud noises, music, speakers, pressure to greet and visit, all were too much, too soon. Also, it could have simply been just a random 'bad hour.'
It’s about time!
Now we find ourselves in the part of recovery that I worried about the most. The ICU was actually predictable, self contained, and felt safe. Now that Mary is home, we face new challenges and we sometimes feel pretty vulnerable. She has ups and downs several times in one day. She will be fine and feeling great and within a few minutes, she has intense pain. Even with her excellent pain medicine, it takes 30-60 minutes for it to kick in. She could have headaches for up to several more months. This will improve over time. Mary’s brain trauma has affected her appetite. She feels full all the time. Nothing is as appealing as it was before. Much of my energy in a day goes toward her calorie intake. This too will improve over time.
One reason we don’t have a lot of visitors yet, is that Mary feels the need to ‘entertain’ when people are around. She won’t stop talking. She may not even realize she is in pain or that she needs to eat or drink. She gets tired more quickly when she talks to people. If you arrange a time to visit with Mary, keep it to about 30 minutes. Be flexible in case she doesn’t feel well. Try to find ways to be the one doing most of the talking, and let her listen.
‘I’m fine!’ Or in others words, ‘Are we there yet?’
Mary loves to text, email, write thank you notes, and be on Facebook. These are all excellent tools for Mary and they help her to pass the long hours at home. Be aware that looks can be deceiving though. So can Facebook posts. Of course she can’t drive, work or even be alone at all yet. But she really does feel pretty good much of the time now. It’s the 3-4 times a day she doesn’t feel ‘fine’, that you may not be aware of.
If you broke your leg, you would have a clear path of the healing process. Get an xray; get a cast; X number of weeks to heal; get another xray; cast removed; yeah! Go swimming! All better. The brain does not heal so quickly nor in such a precise way. The left temporal lobe controls many important qualities: spoken language, processing of language, comprehension, any foreign language, reasoning, logic, and cognitive skills.
Mary really is doing remarkable. But she is still healing. She is on a road to recovery. One big challenge is that no one knows for sure the exact end to all of this. She would like to know when that day will come. She told Dr. Shanno last week, ‘I would like to know the day and time that this will all be done.’ So would we Mary! So would we…
What are your plans this summer?
Mary is encouraged to go on long walks. We walk every morning, 6 days a week, 3-5 miles. She can go lay out at the pool and get in the water (with someone!). We have gone to a movie. We have gone out to eat. We try to do 1 thing fun each day!
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| Mary & Maggie |
Mary is encouraged to go on long walks. We walk every morning, 6 days a week, 3-5 miles. She can go lay out at the pool and get in the water (with someone!). We have gone to a movie. We have gone out to eat. We try to do 1 thing fun each day!
In early August, she has another CT scan to see if the blood clot has completely dissolved. We meet with her surgeon. When it’s all clear, she will have a procedure called ‘Cyber Knife’ which will ‘kill' the AVM that caused this bleed in the first place. Then every 6 months for 2 years, she will have a scan to track it’s progress. After about 2 years, the AVM should be ‘dead’. In the meantime, most of her symptoms should gradually improve. Her speech and cognitive abilities should also be almost at 100% within the next few months.
Lights! Camera! Action!
Our family loves movies. I can tell you the first movie each of my kids saw from oldest to youngest: ‘Ghostbusters’, ‘Little Mermaid’, ‘Beauty and the Beast’, James Bond’s ‘Tomorrow Never Dies’. Many of the sub-titles in these email updates have a movie theme! Eventually, Phillip would like to make a short film about this amazing event in Mary’s life. She will play herself!
Phillip just graduated from film school. He loves to relate life to running a film set. While he was here these last few weeks, he said, ‘Mom, you are like the Director and you need us to be the Assistants to the Director.’ And so, everyone ‘plays a part’ and the scenes are still unfolding.
As the credits roll by, no one part has been too small. Each of you has had an important role:
Emails~flowers~cards~prayers~fasting~calls~treats~texts~helping with Thomas~helping with dogs~weeding our yard~watering flowers~ packages~traveling long distances to help us~teaching my Sunday class~errands~helping Brad car shop~loaning cars~cleaning my house~laundry~Costco runs~and the credits continue on…
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| Phillip & Jessica, BYU graduation April 2010 |
Above and Beyond
Lauren is a close friend of Catherine and Mary. She drove Mary and I to the ER June 19 and has seen all of this with wide eyes and supportive arms for such a young woman. She even took a night shift at the hospital so we could have a night at home together. She has also been our 'Nordstrom Spokesperson' for Mary, hoping to bridge the gap until she is able to work again.
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| Catherine, Lauren and Mary 2 days prior to Mary’s hemorrhage |
Catherine was back here on a plane 48 hours after having just visited us. She left her newlywed husband, Kris, and life in CA, came up here, and did not leave my side for 96 hours. Day and night. She helped me to sleep. She loved Mary like a mom. She managed my cell-calls and texts. She gave updates to friends and family. Kris was able to be with us for a weekend, and was happy to share Catherine with us for 9 wonderful days.
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| Mary & Catherine, May 1 |
Phillip and Jessica left their jobs for nearly 3 weeks to be here. They took night shifts, met with surgeons, read CT scans, did 40 loads of laundry, 20 loads of dishes, cleaned the whole house, tracked Mary’s progress and worked as long as I did each and every day. They even took Thomas for a long weekend to Jessica’s work retreat. It was at a private ranch in eastern Oregon. He had a blast chasing cows in the money grab, watching live rodeo and demolition cars, and camping. It will have been a highlight for Thomas in this unexpected summer.
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| Phillip & Thomas |
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| Phillip & Jessica |
My sister April is a charge nurse at SWMC. She was able to provide us with knowledge and comfort over and over. She stayed overnight several times with Mary to give us a break. She even stayed overnight with us for Mary’s first night home. She was a familiar professional face to the staff, which
sometimes gave Mary more than ‘just another patient’ status.
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| Peggy's sister, April |
Each one of you has had an impact on our family and on Mary in some way. We are so grateful for your love, support and kindness toward us. This whole event has shown us what we are made of and where we stand. It has brought us closer together than we ever were. We are different than we were June 18. I hope you feel the same, even in some small, simple way.
More to come~
Peg and the Fam
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| May 1, 2010 The Goodwin Family |
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