Friday, November 12, 2010

2 Months~9 weeks~72 days~1728 hours~103,680 minutes

Mary’s friend Lauren and I were looking at pictures from late July. We all went to dessert at the girls’ favorite place in Portland, ‘Papa Haydn’s.  It was a month ago. We both agreed, ‘That seems so long ago.’
In one summer we watched our son Phillip graduate from BYU, were blessed with Catherine and Kris’ wedding and I had a planned surgery on my leg.
2 weeks after I was cleared for all activity by my Doctor, Mary’s AVM bled.
It seems like a distant memory when I look at Phillip’s graduation photos. The disk of Catherine’s professional wedding photos was finally completed while Mary was in the hospital. I still haven’t had time to look through all of them yet. Sorry Cath!
But I would not trade this summer for any other! It ranks near the top. I have had the great privilege of spending nearly every hour at Mary’s side. We have actually had a lot of fun! Of course there have been many tears and many trials. But we have learned more about each other in these few months, than we have in 20 years.
Every day has felt like a full week. For the first time in my life, it seems as though we were granted more hours in a day.
I am so grateful for time.

Touched by an Angel
In the short weeks Mary had been home from BYU, I felt her sense of loss. She had finally started to enjoy being away at school and then the year ended. Her closest pal and sister Catherine, was now married and would be several states away all summer. She would be leaving the next day and I felt anxious for Mary.
36 hours before Mary was ill, we all went to dessert in Portland. Catherine was in town that week. Mary was a nanny for the Alders and so we took all of their kids with us! Catherine’s friend Lauren and cousin Allison joined us.
As we all hugged goodnight, I whispered into Lauren’s ear, ‘Will you please be Mary’s friend this summer?’ Lauren smiled and readily agreed. She and Mary made plans to spend the evening of June 19th together.
That fateful Saturday, Lauren tried texting and calling Mary to firm up their plans. After no response, she called me to see why Mary wouldn’t respond.
I was in the kitchen with Mary. I had just found her at home~alone. She was confused, in pain and unable to communicate. Lauren was at our house within 10 minutes. She drove Mary and I to the ER.
From that night on, Lauren became an important part of our lives. She brought food, checked in daily, sat with us in the lobby and with Mary. After about 12 nights, Lauren proclaimed, ‘I’m ready to stay overnight with Mary.’ We were so grateful. We had all taken the night shifts. We were so grateful for this chance for her to stay with Mary, so that we could all sleep at home together.
Her devotion continues. She has spent her summer hanging with Mary and our family. She has made dinners, spent the night, and been like a sister to her.
Lauren will be a forever friend to Mary and our family.

Lauren & Mary

The Social Network
I was not a big fan of Facebook. I had a Facebook account, but only under pressure from my older kids. I have no clue how people manage to find so much time to spend online! 
But now I have a new perspective on it. For almost all 500 million users, it’s just a fad. For Mary, it was the perfect tool to connect her with ‘regular life.’  All of her friends were just like her~away for summer. She was able to stay connected.
Facebook, saved Mary’s summer.

On July 3, Mary came home from the hospital. On July 5, we let her use her computer. The bright screen and overstimulation kept her on for just short segments.
The first time Mary logged on to Facebook that week, she had over 600 messages from well~wishers! She was determined to respond to each and every one. She worked on that for a few weeks. *She also hand wrote thank you notes to nearly everyone who sent a single card or brought something to her.

Phillip, Catherine, Mary~5th generation  BYU Alum

Mission Impossible
From the first week that Mary really ‘woke up’, she had one goal and one goal only: return to BYU this fall.

I remember that first night in our 2nd ER, we met Dr. Shanno. I asked him, ‘So you actually are a brain surgeon?’ Yes I am. ‘Will my daughter be able to return to college this fall?’ I hope so.
As her illness grew more serious and our lives came to a halt, I never asked the question again. It wasn’t my #1 goal. But as Mary grew stronger, it was her only goal. She would tell us over and over again, ‘I am supposed to go back to BYU this fall.’ Many times a day~for many weeks.
We would listen and be supportive without giving any definite opinion or input. I would not let myself look beyond the goals of a single day. But I would not take away her faith and hope in that possibility.
A few weeks ago, Mary and I were in the car and a song came on that seems to be her theme song, ‘Just the Way You Are’ by Bruno Mars.  I almost held my breath with this thought: ‘Why can’t we find some creative way for Mary to return to school?’ It seems that we hear all the time about universities rising to the challenge to help students reach for their dreams.
And so the chain of events began. Her recovery was in hyper speed. We watched her progress leaps and bounds within a single day.  Her therapists began to see that school could be possible. Her surgeons said that it would be good for Mary to have an opportunity to get back to her normal routine and life at school. 
After several days of discussion and support from BYU, Mary will be returning to class this fall. 2 classes to be exact! It will be a trial run of how well she can manage.
 I will go along and stay for a few weeks to shadow her and observe. Catherine and Kris will live close by as well as Erik. Her cousin Lindsay is only a few minutes away.
I will have my phone with me 24/7, and I’m sure my heart will jump whenever it rings. I may not sleep or relax for a while until I feel that she has successfully adjusted back to her independence.
This is a big leap of faith for me. Mary knew that she was going back to school all along. Her faith and courage has taught and inspired me to believe in the impossible.

Refiner’s Fire

‘I’m a different person. Do you believe me? I really am different than I was before.’
Those were the first words Mary spoke to us and she repeated them for many days. She still reminds us. But we know Mary now, as the ‘New Mary.’
She is more loving. She is more comfortable sharing her feelings. She is happier : ) My best friend Sharon said about this early on in Mary’s recovery, ‘…to see your sweetness, vulnerability, strength and humility come out from that private place you keep inside your brain is wonderful and inspiring.’
A friend said to us a few weeks ago, ‘When you face death~it changes you.’ Mary’s life was abruptly interrupted. We all had an opportunity to regroup and look at our priorities. Our family had a singular goal and each of us rose to the challenge!
Thomas was our last miracle around here. Born 7.5 weeks premature at only 2 lbs. 4 oz., it was a refining time for me as a mother and as a person. I would sit holding him trying to get him to eat for hours, days and months at a time. I convinced myself to learn one thing~patience. I knew I needed to be a more patient person.
I guess I was ready for another crash course! I needed to be reminded to live my life focusing on the ‘who,’ not the ‘why’ or ‘when.’
I needed to develop a stronger relationship with Mary. I kept feeling for many years that I was failing at really getting to know her and to truly love everything about her. She was almost 20 and it felt like time was running out.
I needed a great opportunity to be a better Mother to Mary.
Be careful what you wish for! Mary and I have not been apart except for a few hours, since June 19. We have talked about every possible aspect of our lives. We have laughed and been silly; sometimes we have cried and been pretty upset.
But Mary’s determination to get well and to triumph over this ordeal, was inspiring to me.
Now I can be in a stressful situation and I won’t get frazzled. I can face disappointment and try to see the silver lining. I can have concern and fears, but try to get through it with faith and hope.
‘I am a different person, Mary! I really am different than I was before. Do you believe me?’

                                                                    Mary’s new motto


                                Left scan~AVM is the upper right cluster (4-5cm by 2cm in diameter)
                                     Right scan~Mary’s brain with AVM (large upper right white spot)

“All I Want For Christmas is…”

Mary still has to have Cyberknife surgery to ‘kill’ the AVM, which caused her hemorrhage. The plan is to do the procedure as soon as finals are done, around mid-December. She will have a CT angiogram and an MRI to give the surgeons a 3-D visual of the AVM. They will view it in full detail and will discover exactly how much radiation to deliver.
Our hope is that it will only take one low-dose procedure. She will then be able to rest at home with only minor discomfort for 1-2 weeks. If all goes well, she should be able to return to BYU for winter semester.
They will do another CT scan or MRI at the 6 month mark to see if it is shriveling up. Eventually it will become scar tissue and she will be free from any future risks from the AVM.
Her greatest challenge continues to be the loss of taste and a regular appetite. These are controlled in the left temporal lobe. It should improve over time. She tries to stick with bland foods including rice, mashed potatoes, cereal, some fruit and protein drinks. Also thank goodness for Jamba juice!
Mary is a walking miracle. Would it be too much to hope for her to be able to enjoy food again, someday soon? She is living proof that anything is possible.

Always grateful,
Peg and the Fam

1 comment:

  1. Peggy, I had NO idea all of this was going on. I LOVE your family and will always remember your children...they were my favorite ones to babysit. Each kid had a different spirit about them with their own personalities and they were all WONDERFUL! I remember when Mary was born and all of our prayers for her sweet tiny body. I remember holding her and thinking she was so fragile. I loved looking at FB pictures and seeing her grown up. I love reading this blog and it gives me even more faith in the power of prayer. Your family & Mary will be in my prayers. I will be home for Christmas with my husband; we will go between his folks house (off of Mill Plain) and my parents. If there is ANYTHING I can do, please let me know! I love you guys...and yes, Mary will be okay and so will you. You are an amazing mom. I hope you know that!

    Jen (Nielson) Chesnut