Hayden's Hope

Wednesday, August 31, 2011

Tonight I said good bye to my mom

Tonight I said good bye to my mom. She is the best mom in the world and it was one of the hardest things I have ever done. I don’t know if she will still be with us when I wake up tomorrow so I am going to tell you about her tonight while I can still write in the present tense.

Here is what I can tell you about my mom.

My mom is an “Okie” and a “Sooner”. You’d never know it because her Tulsa accent is long gone. She moved out to San Francisco to follow my dad. Every time I pass the Swenson’s on Hyde and Union, I look to where her first apartment was just across the street in the cute 2nd story corner building.

My mom can sew a prom dress just by looking at the picture from VOGUE that I tore out and gave to her. It is a beautiful dress. I still have it.

My mom can make a mean Halloween costume out of a paper grocery bag. I walked many laps around the hills of Sausalito with a paper bag over my head and a huge bag full of candy in my hand.

My mom taught me how to be a good mother. To be there for her kids on hot dog day at school, as a troop Girl Scout leader, teaching us to ride our bikes and reading us every single Nancy Drew book.

My mom believes in me. She still tells me that I can do anything or be anything I want to be if I put my mind to it.

My mom is a great cook. Her recipe box is a treasure trove. I love all of her meals, except for the one time she served us sole with bake bananas. ..still won’t do that one again.

My mom is an amazing singer. She loves to sing in the car and embarrasses me like any mother does when she is singing in the car with her daughter. She sang the loudest and the best at church.

My mom is very creative with flower arrangements. She did all of the flowers for almost all of the fundraisers that I held. And she made sure that Star of the Sea was embellished with beautiful bouquets.

My mom has an infectious smile and laugh. She loves being social and I swear she seems to know everyone.

My mom is a great person, mother, wife and friend. Her DG friends are to this day some of her dearest friends.

My mom has instilled in me the importance of family and spending time together. We would spend time as a family skiing at Squaw, laying on the beach in Glenbrook, driving across the country to see family in Oklahoma or just hanging at home in Sausalito.

My mom’s spirit is so genuine and loving. Lately she has taken it to an extreme by giving hugs to people she barely knows…such is the disease that is consuming her mind and body. I suppose it could be worse. To die blissfully unaware that you are dying is a good way to go.

I love you mommy. I hope that you will find peace when you leave us. I know you will be so happy to be reunited with your sister, parents and friends that have left before you. And when you do go, I know that you will always be my guardian angel.

Friday, August 26, 2011

A Good Way to Live Life

May today there be peace within. May you trust that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith in yourself and others. May you use the gifts that you have received, and pass on the love that has been given to you. May you be content with yourself just the way you are. Let this knowledge settle into your bones. (Author unknown)

Tuesday, August 16, 2011

"New Normal"

It's hard to believe that Hayden has been home from the hospital for a month.  Summer is flying by and Hayden is getting better and better everyday.  In the mean time we are all adjusting to our new normal.  I hate that word "new normal", but I guess it's kind of true. Its all new and its as normal as its going to get for the time being.

Top 10 Ten Reasons you know your life is sort of getting back to normal.
1. You’ve been home for one month and haven’t had to call 911.
2. The sweet sound of Sponge Bob permeates the house at all times.
3. You go out to dinner with the entire family.
4. You take the Hayden to the friend’s houses, movies, to the pool club, Best Buy and Swirl.
5. The quiet nights are free from alarms and Code Blue PA announcements.
6. Hayden misses the cute nurses from UCSF…but he would never admit it!
7. Hayden used his “bribe” money to buy an X Box and now his biggest worry is what games to buy.
8. The kids are starting to annoy each other again.
9. I have taken control again of the social schedule for the entire family.
10. John and I don’t have to sleep in a foldout hospital chair anymore.
Really Mom, my sister is annoying me!

Dinner at Marin Brew Co. while watching the Giants game.

Yummy frozen yogurt at Mill Valley's Swirl.

Hanging at the pool with friends.

Top 10 Reasons you know you’re not quite back to normal:
1. Your son is still on a ventilator at night and oxygen during the day.
2. You have to pack up O2 and life saving equipment whenever you go out of the house with Hayden.
3. You have registered your house with the police and fire department as being potentially "explosive" because of all the oxygen in house.
4. You're constantly worried he's going to get sick again.
5. The Master Bedroom is now Hayden’s room and Hayden’s Star Wars room is now our room.
6. When I go to sleep at night it is in a king size bed situated in Luke Skywalker's Sand Cruiser and there are glow in the dark stars on the ceiling.
7. All of the grown up art in the master bedroom is covered with Simpsons posters and Sports posters.
8. Life size images of Buster Posey and Lionel Messi are permanent fixtures in the master…I mean Hayden’s new room.
9. The first night nurse fell asleep on the job….John and I are doing "night watch” until a replacement is found.
10. Instead of the fold out hospital chair, which ever of us is on “night nurse” shift sleeps on the blow up bed next Posey and Messi.

The blowup bed in Hayden's "new" room where we keep watch
over him at night until a new night nurse is found.

O2 Tanks waiting to go out on an adventure with Hayden. 
The machine next to them is a condenser that provides oxygen
for Hayden and refills the tanks for us. We are high tech here!