A gift from Joaquin Benito Ruiz

In January I attended the funeral of a six-year-old boy named Joaquin Benito Ruiz.

I didn't know him, but his mom used to be my sister-in-law. And his sister is my niece.

Joaquin died of complications from congenital heart disease, but he had other problems too--problems with long names that I can't pronounce or remember--and he actually lived three years longer than expected.

As soon as I showed up at the funeral I immediately fell in love with Joaquin and his family. Joaquin's many brothers and one sister (my niece) touched me deeply as I watched them gathered around his casket, stroking his hair lovingly. And longingly. The image of it lingers with me even three months later, as do the life lessons I scribbled down on a piece of yellow card stock during the service.

The funeral felt like a spiritual eye opening somewhere in the corners of my heart. My sister and her husband, who lost a child 12 years ago, agreed and later said it was life changing for them.

Joaquin's father gave such a beautiful tribute to his little's boy's life, that I dug into my purse for a pen and paper to write down the poignant insights to share here on The Magic Quilt with those of you who have lost your own children.

I have been wanting to record my experience at the funeral, but somehow, somewhere the yellow card disappeared into thin air. I searched high and low for weeks, but to no avail. Finally yesterday I said a silent prayer, asking God to please, please help me find the yellow card so I wouldn't lose those comforting messages. And then I stopped searching.

Later in the day I started moving some bookshelves around and transferring books from shelf to shelf. Just as I was completing the project, the yellow card fell from one of the books and landed at my feet.

I wasn't surprised.

Allow me to briefly share exactly what I jotted down during the funeral. (I promise to expound on these ideas at a later date):

1. From death we learn about life.

2. You haven't lost a child, you've gained a guardian angel.

3. A touched heart is not a changed heart.

4. Sometimes you have to break a heart to change it.

5. Some souls don't come here to learn, but to teach.

The most powerful message came when Joaquin's father talked about how stunned and discouraged he and his wife were after the sonogram revealed his son's physical deformaties. They prayed to God saying, "Lord, this wasn't supposed to happen to us!"

Six years later, after loving and losing Joaquin, they have changed their prayer to "THANK YOU, Lord, for allowing this to happen to us."

Love is never wasted or lost. No matter how fleeting.

Even the most painfully fleeting moments of loving, and being loved in return, are abundant blessings.

I wrote down a quote by Winnie the Pooh, that was framed and displayed among all the family pictures at the funeral. It felt like a direct and personal (yet universal) message from Joaquin:

If ever there is a time when we're not together, there is something you must always remember; you are braver than you believe, stronger than you seem, and smarter than you think, but the most important thing is that, even if we're apart, I'll always be with you.

I am going to ask Joaquin's parents to donate some flannel in his honor to our magic baby quilt.

(By the way, I am still receiving fabric from mother's who have lost children and will continue posting photos throughout this week.)

The Magic Quilt's Moves On

In January of 2011 I received the following  email from a woman named Corrine:

I just wanted to let you know that this week, Lila and I passed along the quilt to its new owner, my great friend Kathy.

Stan's wife, Lila, and daughter-in-law, Corrine passed the quilt on to a pregnant friend, who had, during her pregnancy, received the news that she also had breast cancer.

The following is the post from Corrine's blog, Littlest Bird:

Passing on the Magic Quilt

Remember Stan, my sister's father in law, who passed away last October?

Do remember the magic quilt that was given to him as a gift, to help him through his journey?

The magic quilt was ready to burst with the need to give its magic to someone new

and I thought of my friend:

Kathy.

My book-club companion and fellow lover of the written word.

Six weeks after finding out she is pregnant with her third child

she was diagnosed with invasive breast cancer.

As of this week, she has already had surgery and several rounds of chemo (that began when she entered her second trimester).

Her baby boy is doing amazing.

They are holding off on more chemo, now, until he joins us on this earth and then she gets to start again.

But this incredible woman needs all the magic she can get right now.

When I asked if she was interested in being the next recipient of the magic quilt,

she said yes.

So on Tuesday evening, Lila and I went to her home.

She and Lila sat on the couch while I helped Kathy's daughter, Naomi.

Lila told her about the quilt, the love that went into making it and the strength that she and Stan found in its folds.

I took their picture (along with the darling Naomi).


I had Naomi hold my camera and take a picture of all of us.


May the quilt works its magic of peace and heart-healing for you, Kathy, and your family.

You're in my prayers.

In June 2011, Kathy finished her chemo. On her blog, Bobblehead-ology, she describes it perfectly:

Friday, June 24, 2011

Done

I finished chemo on June 3. It was a date that couldn’t come soon enough. I really didn’t want to spend any more time in a room hooked up to Taxol and my one-time friend Steroids. Decadron was supposed to help my body accept the chemo called Taxol. I’m sure it did. But Decadron, you’re such a bi###. You seem all nice at first, giving me these wonderful break-from-the-norm energy bursts. But when that energy kick runs out, you’re just left with puffiness, swollen feet and ankles, weight gain and roid rage.

Note this important equation before taking up a friendship with Steroids:

Before steroids - 1 slice of bread = 110 calories
After steroids – 1 slice of bread = 1100 calories**

**(Actual calorie numbers may vary. This estimate based on fatigue and roid rage.)

Anyhow, as I was saying, June 3 couldn’t come fast enough in my mind. I almost felt like if I could just fast-forward time, I could somehow escape the dizziness, fatigue, joint pain, hair loss and loss of feeling in my feet from chemo.

But my fast forward button broke. So I just went through the 12 weekly treatments like every other mortal.

And now I am done. DONE. I felt pretty drained after that last chemo session. My body feels and looks like some poisons had a party in it for six months. I look in the mirror and wonder who that person is. My hair grew back during the break from chemo to deliver Kilian and is now mostly gone again. But chemo is over. It is time to kick those poisons out, clean up the crap they left behind and move forward. I’m not waiting for radiation to be over to start this process. I’m reclaiming my body now.

I joined Weight Watchers. And I’m making myself exercise with whatever energy I can muster. I went to a kickboxing class at the gym on Saturday. The girl in front of me wore a pink shirt. Since pink is the symbol color for breast cancer, I focused on her shirt during every kick and punch and imagined myself kicking cancer right in the nose. I’ve heard tales from runners about a euphoric feeling they experienced after running a certain distance. I never understood that feeling before. But after that kickboxing class, I did. I felt like there was this light exploding out of me and smashing into that pink shirt.

Die cancer. Be gone Taxol and Decadron. Take your side effects and leave. You all are no longer welcome here.

Friday, October 4, 2013

3 Years Later

I saw someone at church this week who reminded me of something I've known for a while: I should probably tell all the awesome people who followed the blog and helped us that everything is going well for us. I recently passed my two-year anniversary of ending treatment. Last week I got a clean mammogram.

Kilian is now two-and-a-half, healthy and seemingly a normal, curious, talking two-year-old despite growing in my belly through surgery and half of my 6-month chemo regimen.

The biggest health scare we've had from him so far was a case of walking-pneumonia last spring and some extremely picky eating behaviors that made him suddenly drop off the charts for his weight, despite maintaining an average height.

But thanks to weight-gain Pediasure, bacon, fruit smoothies with ice cream and scrambled eggs cooked in olive oil, we recently celebrated him returning to a more normal 11 percentile weight.

(Below are two photos I took of the kids last spring in our garden out front).

The Passing . . .

There is something about the song, Temporary Home, by Carrie Underwood that always chokes me up. Maybe because we're all just passing through, and Earth is just a stop on the way to where we're going. Some pass through so quickly--they come and go in a flash--and for others the passing is long and drawn out, but they all leave a searing and lasting impact on those who were stricken by their love.

My daughter once went to The Festival of Colors and she came back different. Messy different. Her shirt had been splattered with all kinds of new colors, stained together forever. They are a permanent part of the shirt now. A permanent beautiful part.

Love is messy like that too--messy with joy, and with pain that changes us for good, even when it's bad.

Lila Tolman came back changed after her husband's death. Permanently, and beautifully changed. For several months after Stan's passing, she kept the magic quilt as a source of comfort. But in time, she did the only thing there is to do with comfort. She passed it on. 

The following is the letter I received from Lila after she found a new recipient for the quilt: 

I have found new strength in my Heavenly Father's love.  It is so strong.  I know I am not forgotten.

It was such a special experience to pass on the quilt.  I gave Kathy a journal to record her journey.  I also printed out the stories of the quilt and Stan's story and put them in a binder and gave it to her.  I told her it would be nice for her to add her story to the book when she passed on the quilt. 

I want to thank you for the wonder and comfort the quilt brought into my life.  When I took the quilt to Kathy I wanted to give her the Mozart CD  you gave to Stan with the quilt, but I couldn't find it.  Today when I was driving Stan's car (the one he drove to work everyday until just before he passed away),  I turned on the CD player, and the CD you gave him started playing.  That was the car he drove to work until was listening to your CD.  Thank you for making his life richer.