"Hope for a Sea Change" by Elizabeth Aquino

My friend, the very talented writer Elizabeth Aquino of the blog "A Moon, Worn as if it Had Been a Shell," has written a gorgeous new memoir called  
"Hope for a Sea Change."
 
 It's available in eBook form for only $2.99 from
Amazon.com and
SheBooks.
I hope you will follow one of these links and order a copy. You can read it in one sitting, and I'll bet you will, because you won't want to put it down. Elizabeth's writing is gorgeous, and her story will give you a glimpse into what life is like for an intelligent, energetic, witty, loving, creative, dedicated woman when she is faced with the sudden onset of a mysterious illness in her precious first child.

Elizabeth's writing is insightful, honest, clear, and yet filled with feeling. Her descriptions of life with a critical illness in the family - of adjusting, coping, and seeking help from "the best of the best" - are gripping, intense and luminous. I could feel her hope, discouragement, wonder, exhaustion and dark humor as she tells Sophie's story. The only downside of this memoir is that I wish it was longer.

One of the bonds which we share is the birth date of our only daughters. Sophie and Katie were born on the same day, in the same year. Though I have never met Sophie, I was fortunate to be able to meet Elizabeth in Victoria, B.C. last year when she was on a respite break, provided to her by Caregifted. Elizabeth's voice and sensibility is a gift in my life, and I know that it will be in yours, once you dip into her beautiful prose.

That's Elizabeth on the right, across from Kim of the "Art in Red Wagons" blog

Elizabeth's writing and friendship have been lights on my path since I met her in the blogisphere. I recommend you visit her blog, as well as download her memoir. If you are anything like me, they will leave you you wanting to read more. I can't wait until she finishes and publishes the long version - but please, don't wait! Order your copy today. It costs less than a latte, and its impact will be far more lasting and beneficial to you than a rush of caffeine.

What Would You Tell Yourself?

My friend Elizabeth Aquino of the blog "A Moon, Worn as if it Had Been a Shell" invited her readers to take part in a video she was making.

Elizabeth is the mother of Sophie, Henry and Oliver, wife of Michael, and an elegant writer, an activist and pastry chef. Feeling intimidated yet? But don't be - she is also one of the warmest, most supportive, empathetic, sharing and inclusive persons I've met in the blogisphere. Having a full life of her own, Elizabeth still takes the time and makes regular efforts to care in meaningful ways about the lives of others. Hence her participation in the Hopeful Parents community, and the video.

The video's participants are parents of children who have disabilities, and the topic is,  
What would you tell yourself, if you could go back to the day of your child's diagnosis?

I invite you to watch, and let me know what you think when you see the messages. Here is the link: Elizabeth's VIDEO .

Thank you, Elizabeth, for asking such a good (and deep) question, for listening to the responses, and for sharing them with the world.

Welcome Home

A lot has happened since I posted on the 10th - and it's only the 11th!

Tomorrow (Saturday) is Stud's big SHAVE to raise money for St. Baldrick's (pediatric cancer research), in Katie's honor...check out his mama's blog for updates. To read about another brave shaver, check Paul's blog and read about his friend, Caity.

We arrived home late last night after 5 days in Palm Desert with my parents. It was a good trip. I am always thankful for smooth flights and safe landings - as well as safe flights and smooth landings. There were high winds in the Puget Sound area, with gusts up to 60 m.p.h., so we were warned that it would be a bumpy descent...but it wasn't. Thank you, Alaska Airlines, for two great flights.

The night before we left home, our sweet Liger (a.k.a. Gandhi) came into the house limping. It's hard to describe how this made me feel, but I'll just say that the urge to cancel our vacation and stay at home with him was strong. David was flying in from college to meet us and take the same flight to PSP, so we couldn't cancel, but ohhh...leaving my sweet little guy at home, limping, was awful. Our dear neighbors had it all under control, and took great care of the cats and house, so I knew he was loved, but I was glad to see him and give him love when we got home.

HOWEVER, this morning, his leg started bleeding - Aieee! Fearing a broken bone, I called the local vet before they opened, and sped up there immediately after. It was simply an abscess, but a bad one, and the poor little guy is still woozy from the anaesthesia. I won't go into details of what they did to help him, or the mess he made while "under the influence," but suffice it to say that I've done a lot of laundry and cleaning today. I'm just glad that he is on the road to recovery. Wish he could sleep with us tonight...

While on vacation, I decided to resign from my monthly column at the wonderful website, Hopeful Parents. I've been writing there on the 10th of the month for over 2 years, and I love the founder and the purpose of the site. It has been a privilege and a joy to be part of the team, and I've learned a great deal from the wonderful writers there.

It dawned on me that I am not actively engaged in parenting children with special needs nowadays. David certainly has grief to deal with, as we do, but he is 5 hours away from us most of the year. He is leading an independent life for 8 to 9 months of the year, so we are effectively "empty-nesters." It doesn't seem fitting for me to write about my life there, when other columnists are taking care of children with life-threatening medical needs at this moment. My issues just don't have the same kind of immediacy. Grief is still an issue here, and I am deeply involved in hospital issues and cancer advocacy, but I just felt that there would be someone else who could speak to the site's current parenting issues better than I can. Please do share the site, if you know someone whose child has special needs - it's a supportive community of great writers.

I feel ready to write about other things than Katie's cancer journey and my grief. It's a big part of my life - it changed me profoundly - but it's not my entire life story. So we shall see where I am led.

Here are a few photos from our time in Cali.

Have you ever seen a 14,000-foot peak from above? Mt. Rainier.

Mom at the spa, having a pedicure.

Birthday balloons for Katie's Sweet 16th birthday.



Getting ready to set the balloons free - wishing Katie was with us.

Getting ready to go out to dinner. Mom & Dad like to serve wine and hors d'oeuvres first at the condo - sometimes with a side of cribbage or gin rummy!

The traditional daiquiri or margarita with dinner at Las Casuelas Terraza before going to the airport to fly home. I wish we could have stayed - the band was just setting up in the courtyard!

Did I mention that the temperature difference between Palm Springs and Seattle was 50 degrees?

That's right: 50 degrees!

When we left for the airport, the car's thermometer read 89 degrees; when we arrived at home, it was 38 degrees. Time to put away the shorts and get out the fleece.

At Hopeful Parents

NOW I'm over at Hopeful Parents! and our guild is featured in the Bainbridge Review, here.
Thank you for writing such a great article, Erin!

I'm at Hopeful Parents Today

I'm over at Hopeful Parents today - please come and visit!

Hopeful Parents

I'm over at Hopeful Parents today - come and visit!

Hopeful Parents

I'm over at Hopeful Parents today - please come and visit!

Hopeful Parents

I'm over at Hopeful Parents today. Do come and see me, and meet the others!

Hopeful Parents 10-10-10

I am posting over at Hopeful Parents today, on 10-10-10!

Busy Week, Sleepy Friday Night

It's been such a busy week - I'm tired, and just about ready to go to bed. But first, a recap:
Monday, I called in (this is my new, part-time job) to find out the specials at Burrata Bistro & Paella Bar. I do this every day, and post the updates (when there are updates) on facebook. We had Gregg's parents and his eldest sister, Linda, and brother-in-law, Bill over for dinner. Walked 3+ miles.

Tuesday, a lady came to measure some of our windows for blinds. We've lived here for 10 years without many window coverings, because we have a lot of privacy. But the cost of propane (to run the furnace) has climbed so high since we built this house that we are going to invest in some more blinds to keep the heat IN. Since the weather people are predicting a very cold winter (El Nino), it's time to act now. Remember this?

I get chilly just thinking about it.

After the appointment, I caught the ferry to Seattle to pick up a donation of fabric from a custom furniture company (see Katie's Comforters Guild's blog for more info). Then I went to the hospital to deliver 42 blankets. After that, I interviewed the director of the Therapeutic Play Program at Seattle Children's Hospital for an article I'm writing about therapy dogs. When it's finished - if it's published - I'll let you know! Walked 4 miles with Gregg after dinner.

Wednesday, I worked on writing and catching up after being out all day on Tuesday. Photographed quilts and fabric for the Guild's blog. I called in to Burrata again, etc. Walked 3+ miles.
Thursday, I went to the Farm Kitchen to learn from the amazing Hollis how to do more complex website work. It's going to take some time to master this, but I feel so grateful to be taught by someone as talented and kind as Hollis. After our meeting, I went to Paella Bar to take some photos,

and then over to Lola's Mexican Kitchen

to do the same. After a quick bite of lunch - take-out from Lola's - I stopped into the local bead store (not my favorite place, but I was in a hurry) to get a few items for some jewelry I'm making. Then home to get dinner ready, and a trip to Costco, the mall (to pick up shoes on sale) and then for a beer at Silver City Brew Pub with Gregg. Walked 3+ miles.

Friday (today), I wrote my piece for Hopeful Parents (I post on the 10th of the month), walked 3 miles, got a haircut, and picked up donation cans from the September (Childhood Cancer Month) drive. I will post a total soon - some of our good can hosts want to keep the cans a bit longer for more donations - I love that! Came home and worked on Burrata business, had my parents over for dinner, and watched a mystery with Gregg.

I'm "plum tuckered out," as they used to say. Good night, all! I wish you a wonderful weekend.

I'm at Hopeful Parents

I'm over at Hopeful Parents today.

At Hopeful Parents

I'm over at Hopeful Parents today.

I'm At Hopeful Parents Today

I'm over at Hopeful Parents today - please click on the link to read me there.

Survey for Hopeful Parents

Would you be willing to take a brief survey? It's to help the Hopeful Parents website, for which I write each month on the 10th. Here is the link to the survey.

Thank you!

Hopeful Parents

Is it ironic that I'm also over at Hopeful Parents today?

Hope, and Emptiness for God

I have wanted to write so much here, but have been too "busy" to do so. I have saved lots of daily devotionals in my email "inbox" so that I could go back and reflect and write about them...but feel too overwhelmed right now with "things to do" to go back. Just know that I've been thinking of you, and longing to share it with you.

I've been preparing for tomorrow, when I will speak (briefly!) at The Moyer Foundation's Annual Giving Luncheon. It's their 10th anniversary, and they are celebrating the community that has supported them, and helped them to raise $19 million to give to charities that aid children in crisis. I will speak about how their giving has directly impacted our family through Ronald McDonald House, The Hutch School, Seattle Children's Hospital Childlife, Advanced Care, Hospice care and the American Cancer Society's Camp Goodtimes West. (If you are a praying person, I welcome your prayers!)

It felt awesome to be capable of juggling all that I had to do while Zoe was here, but as soon as she and her group left, I "crashed." Just started to feel ill and tired, and had to S-L-O-W D-O-W-N. I'm still moving slowly. To those of you with full-time jobs, I bow in humilty; I am not you. I am accustomed to a slower pace, and must admit that I can't multi-task for any length of time with any degree of grace, fluidity or success. I just can't do it now. Whether or not that will change, I have no idea.

Why fill the heart with hopes? Leave it empty for God. -Robert Mertens

This quote was in my inbox today. It was funny, how it hit me.
The first thing I thought was, In the old days, that would have seemed quite depressing to me.
The second thing I thought was, That's a very Buddhist way of looking at things. Having done a bit of Buddhist reading, I could see how it is actually a very positive statement. They look at hopelessness differently than I was taught to look at it. (For example, look at "When Things Fall Apart," by Pema Chodron)

Once a month, I write for a website called "Hopeful Parents." And without hope, I don't think I'd get up in the morning. But hope can mean many things. Here is why I say that:

I had great hope for our family, including our daughter.
I had great hope for our retirement savings.
I had great hope for growing in excellence myself.

All of these hopes have been derailed, or at least, are not going to be fulfilled the way I had hoped they would be. Let me say that again: NOT GOING TO BE FULFILLED THE WAY I HAD HOPED THEY WOULD BE.

I had hopes and dreams, and I had hope for my dreams to be fulfilled in a certain way. You could say I had visions of my hopes coming true - attachments to "how" they would happen, as well as to the outcome. This is a kind of "controlling" thinking.

I thought our daughter would grow up, graduate from high school and college, get married and possibly have children. She won't.
I thought our savings would multiply by the "rule of 7." They haven't.
I thought our savings would take us sailing into retirement, even - possibly - an early retirement. They won't.
I thought our savings would keep me as a stay-at-home wife and mother until Gregg retired. They probably won't.
I thought with study and prayer, I'd eventually outgrow my character flaws. I haven't.
I thought I'd be a good, giving church member, continuing as a deacon and a Stephen Minister. As far as I can tell, I won't.
I thought that God would teach me to be a better person through prayer and study and practice. Prayer and study are good and useful, but He is teaching me the most through life's events. And I don't think that my becoming a better person necessarily glorifies God; it would make ME feel better about me. He may be able to use my flaws in His own way, to His glory. I am trying to accept that!

We have very little control at all in this life. Just when I think I've learned that in one area, it pops up in another. And another. And another. It's a continual, humbling process of surrender. 

So I love this quote because, rather than hopelessness, it is reminding me to place my hopes in God, not in my dreams. Dreams are fine and good - they are natural to us as humans, and we need them - but we can get so attached to them that we have struggles when we have to let them go.

If my heart belongs to God, I can leave it - at least a little bit - "empty" for Him to fill it.  Moment by moment, He can help me.

My best hope is in the love and goodness of God and His creation.

Hopeful Parents

I'm over at Hopeful Parents today.

At Hopeful Parents

I'm over at Hopeful Parents today.

At Hopeful Parents Today

I'm over at Hopeful Parents today.

Hopeful Parents

I'm over at Hopeful Parents today.