I Left My AVM in San Francisco!

“I Left My AVM~in San Francisco…” (To the tune of “I Left My Heart~in San Francisco…”)

We had a sudden announcement from Mary’s doctors that she would be released. We could hardly believe it~she had barely eaten in 6 days. She could barely even sip through a straw. Her pain level was at a 9-10. She had just opened her eyes for the first time since Friday night. There was still nothing we could do that brought her comfort. But she was ‘stable’ so they felt she could recover just as easily at home.

So needless to say, we felt ill prepared to take our fragile Mary out of this safe place. Now we had some quick, big decisions to make. Mary wanted to go home. That was made clear. Dr. Lawton told us that the best place for her to recover is in her own home. So we took one night in a hotel to be sure.

By morning we felt sure of a decision. Taking her home would be a difficult journey for just a few hours, but the payoff would be great. So we made our way through TSA and all the tangles of security. Imagine a mom pleading with TSA officials to let her daughter not have to take off her jacket, shoes and hat. Imagine them still forcing her to make her way through the metal detector. Imagine how she felt with all those people around. Mary had only walked a short distance a few times since surgery! Her eyes still remained closed for much of the time because they are so sensitive to light.

Her head and entire body were still in great pain. This was yet another thing she had to endure.

But by the time we were picked up by Jessica at the Portland Airport, I could see Mary starting to warm up. She signed ‘Thank you, Mom’ to me in the car. She had a decent sleep that first night. Home felt much better than the constant beeping of I.V. alarms and continual nurse checks.

I’m so grateful that home is where Mary chose to be when she needed it most.

Xena~Warrior Princess

Mary is the bravest, most courageous person I know. I have sat in stadiums and watched her as she warmed up and prepared herself to run the powerful 400m countless times. I have watched her battle the toughest opponents head to head and toe to toe in hundreds of soccer games. I watched her sing, dance, act, night after night never missing a line~never cowering on stage.

But what Mary faced in choosing brain surgery was sheer terror. Knowing that you will put your life~your physical abilities~your future~in the hands of a man you barely know takes pure guts.

On the morning of surgery, Mary was afraid. She had held her head so high and so confidently all those weeks before, but this was the moment~this was her having to leave us and walk out onto that battlefield, alone. We held her and prayed with her and encouraged and reassured. But it was still her battle. She had to let go of our hands and go out to wage the fight of her life.

We couldn’t go with her~we couldn’t take her away~we couldn’t fight her battle. We could only wait on the sidelines and keep our faith and chins up.

Mary is a champion! She never had any complications the entire surgery. She had great vital signs. She came out strong and ready to continue to wage the new battle of recovery.

In such a humble way, her first words to us were, ‘Look what we did! Look what we did! I can use my hands~I am talking~look what we did!’

She never once took any credit for her courage. She was never a martyr. She continued to try and convince us that we fought this battle with her. That she didn’t do it alone. Of course, she’s right. She had all of our combined faith and prayers. She had angels surrounding her. She is so right. None of us are ever truly alone.

Mary is strong and brave and courageous. Mary is mighty. Mary is our miracle.

AmaZane

If you look up the name ‘Zane’ it means ‘Beloved; Gift from God.’ It’s true. He is both.

Zane gets Mary. He has the patience of a Saint and the wisdom of age. He loves Mary’s many strengths and understands her recent challenges.

Zane was not intimidated by Mary’s illness and the uncertain future she faced. He not only helped her make the decision to choose surgery, he stood by her side and held her hand as she went through every step of it.

He took time away from school to be with her at UCSF. He listened and learned firsthand from among the greatest surgeons in the country, in one of the best hospitals. *His professors should give him extra credit for all that he has learned and experienced with Mary’s rare AVM! It’s probably one of the best internships he could take on.

From the moment he saw Mary after surgery, he was completely comfortable with her. The first thing he did was go right to her incision. Even her strong Dad couldn’t do that! He loves her incision! He is so proud of her. He took care of her every moment along with us, and when he left on day 5, we weren’t as strong of a team without him.

He helped her transition to home. He knows just when and how to give Mary comfort with just the right touch. It wasn’t until Zane was with her, back here at home, that Mary really laughed and smiled. At that moment~in our kitchen~I knew Mary was ‘back!’

Zane is beloved. He is a gift to Mary. He is a real life hero in her miracle story.

It Ain’t Over Till the Fat Lady Sings

She’s home! She survived this ‘impossible’ surgery without complications! She has her sense of humor and her voice and her beauty!

But Mary still has a long road. Her eyes are still sensitive to light and to movement. The 9 hour surgery took place behind her left eye. Consequently, both eyes were swollen shut for 5 days.

In order to reach Mary’s AVM, they had to cut through a muscle in your left temple that affects your jaw movement. So speaking, chewing, biting, swallowing, talking~all still uncomfortable.

Food tastes bad again. And she still battles nausea. And she is still in pain. Not just in her head, but all over. The doctors said that with such a long surgery, it’s normal for her to hurt everywhere. Her pain could last 2-4 weeks.

She speaks quietly and so we try to listen carefully so we don’t have to make her take more energy and efforts to repeat herself. She likes the room dark and the noise level quiet. Her brain needs to rest and recover. The pattern of blood flow through her brain for her entire life has abruptly changed. It is working very hard to adjust to its new route.

The eloquent part of her brain was invaded by these life saving hands. It’s the area that controls her speech going out but also her understanding of speech. It also governs smell and taste. Her brain is compensating overtime to still manage all of these duties~and it’s doing a wonderful job! She really is still Mary in every way.

Because of these unique challenges and because we wish for Mary to complete her recovery with the greatest of success, we are asking for no visitors for a while. Mary needs to feel safe and comfortable and in control of something~her day to day environment. Home is quiet and predictable.

But Mary isn't taking all this laying down. Oh no. She was walking on the treadmill today. Today she cooked us a gourmet lunch of sauteed salmon and brown rice. She will soon begin an online class through BYU. Mary is the hardest working patient there is!

Oh. And she has 50 staples in her 8 inch long incision~from the center of her forehead hairline, across and down to where it almost touches her ear. Yes~50.

Don’t get me wrong~Mary is very proud of her incision! In fact, she doesn’t want the scar to fade. Someday, she wants to ‘show and tell’ her story.