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.

Grandmas are people too!

The fabric keeps on a comin'! Woohoo! I love it. Keep spreading the word. I want to make at least 10 baby quilts in the next few months and start them on their journey to comfort those women around the globe who are mourning the loss of a child. I need flannel. To represent those who are lost. But never forgotten.

Look at this adorable flannel I received today! Have you seen anything happier? It's the happiest fabric on earth.

This fabric comes to us from this sweet, spunky woman named Marilyn Larsen. She is little Ladybug's grandma.

A few weeks ago I got an email from her which said:

I'm Amy's momma and Ella's grandma. (the Matriarchal Madwoman) I would LOVE to send you some flannel because I want other grandmas to know of the love and compassion I have for them. So often we focus on the mommy (as it should be), but the grandparents suffer as well. I never saw my husband cry so hard as when we were watching our daughter hold her baby as her little heart stopped beating. We suffer for the loss of a precious grandchild, but the pain of watching your child suffer is incredible.

I have spoken to several other grandmas who confirm this is TOO TRUE!

In the letter I received with the fabric, Marilyn says:

I'm donating this in honor of Ella Standage, who came into this world Dec 29, 2010 and passed a couple of hours later. I'm honored to be her grandma and hope that this bright happy fabric will comfort another grieving mommy.

I've given the fabric a big hug and am sending it with all my love and prayers for those parents AND grandparents who grieve for our lost little ones. I'm honored to know that I have a choice, perfect granddaughter who will watch over us always.

I just love it when people say things better than me.

Lady Bug, Lady Bug, Fly Away Home

Remember Amy and Ella? My inspiration for the Sisterhood of the Magic Traveling Baby Quilt project?

Well, the project is underway and Amy has contributed some flannel fabric for the quilt to honor her little Ella.

Ladybug was Ella's nickname whenever Amy talked about her online, and even though Ella was born and died on the same day, there is sonographic evidence which captures her perfect little ladybug loveliness while she was alive:

Ella Standage

Born: December 29, 2010

Died: December 29, 2010

Safe Passage Ella, as you fly away home.

Emma and Taylor

Here's a heartwrenching story:


I have received several emails asking for my address for the purpose of sending flannel for our traveling baby quilts, but today I received the first fabric in the mail.


It is in honor of conjoined twin girls. Emma and Taylor shared a heart. It's a beautiful metaphor, but the logistics of sharing a heart are quite a bit more complicated. This past August, at three years old, they underwent sugery to qualify them for heart transplants.


Neither one of them survived the surgery.


INCONSOLABLE!


This fabric was donated on behalf of the twins' mother, Mandy, by her sister-in-law, Sara.

Blue and purple were Emma and Taylor's favorite color.

This post goes out in memoriam to honor:

Emma and Taylor Bailey

Born: September 2o, 2006

Died: August 10, 2010

Be the comfort you want to see in the world

Yesterday was Ella's funeral. I read her mother, Amy's words this morning and one line in particular struck me: 

Hearts that have been broken wide open need to be filled up with something else. 

How profound!

Maybe that's why it is so important to fill broken hearts with love and comfort and compassion, before they get filled up with bitterness, anger, and regret.  Broken hearts are so darn vulnerable like that.  

I was just made aware of this family who recently lost their 14-month-old son, Andrew. He died in his sleep of SIDS. It's a parent's worst nightmare! The thing we all secretly fret over and fear. Let us all go and give this family a hug! 

I bet my sister will make another "for keeps" baby blanket like the one she made for Amy.

She just asked me yesterday to let her know if there is anyone else who needs one. Making baby blankets is such a productive way to grieve the loss of a child, don't you think? Just another way to fill up a heart that's been split wide open. 

Hey, I just thought of a new motto! 

Be the comfort you want to see in the world. 

I'm surprised Gandhi didn't think of that. ;)

So, to summarize: If you have lost a child, or know of someone who has, please join hands with the rest of us to soften the blow for others who are experiencing the same loss. It can be an adult child, or a miscarriage, it mattereth not. It can even be a grandchild or a niece or nephew. If you loved a child that has shuffled off this mortal coil, I am asking you to donate a piece of flannel in his/her honor. In remembrance. In memoriam.

So how can you join hands with us? 

1. Send a piece of flannel fabric which represents the child of honor. It can be a yard, or several yards, or simply a 12x12 square. 

2. Include your child's name and birth date AND death date. (My sister says the death date is very important to her since her son died.) 

3. The flannel will be cut into quilt blocks and sewn together with love, and with other quilt blocks honoring other children who have finished their earthly journey. 

4. The child's name, birth date and death date will appear in the corner of his/her quilt block. 

5. The baby quilt(s) (hopefully we will make dozens) will begin their journey as magic traveling quilts. Each person who receives the quilt will keep it as long as they need, until they feel ready to part with it and until they find someone else whose heart has split open wide and needs a filler. They will then pass it on. And so on and so on and so on. 

6. A notebook, which my sister is at this very moment making, will accompany the quilt on it's magical journey. The notebook will be for writing letters, messages, quotes, or little love notes to the absent child. This will be cathartic for both the writer and the subsequent readers. 

7. If you would like to include a love note to your child to be inserted into the magic notebook before it is sent out to the first recipient, please send it to me along with your fabric, or email it to ctddiaries@gmail.com.  

And please raise your hand if you would like to help sew "for keeps" blankets, or help piece together the traveling magic baby quilts once we get rolling.

Let's get to work, peeps!

Amy and Ella (and the Sisterhood of the Traveling Magic Baby Quilt)

I've been taking my dog for walks around the duck pond a few miles from our house lately, and while I walk, I think. Sometimes I think about life and sometimes I think about the ducks, who swim along the waters edge, trailing me, as I make my way around. They honk, honk, honk at me, as if to say "I'm starving! Did you bring me anything to eat?"

Ever since I fell in love with my dog, Lulu, I have developed this soft spot for animals. I can't stand to think of them hungry or neglected. Maybe that, coupled with the fact that I too know what it feels like to be hungry and needy, makes me feel enormously sorry for them.

So, of course, I've started bringing them food.

It's one of the benefits of pain and sorrow . . . once you feel it, you don't want others to feel it. And when you see them feeling it, you can't help but reach out and try to soften the blow.

But how do you soften the blow? With soft words?--I'm so sorry--soft prayers?--God be with you as you sorrow--soft blankets? --May I offer you a place to bury your head and cry. A place we have stitched together with love and compassion. You are not alone in your suffering. We have been there. We have all been there.  

I don't know if it's possible to soften life's blows, all I know is that we have to try. 


I recently heard a story about a mother who loses her child. It's an old story. A mother loses a baby. She is not the only person in the world to lose a baby--I could name dozens off the top of my head, and that's just who I know personally. I suspect you could name dozens too, but no matter how many mothers lose their babies, each story will always be immediate and deeply personal. And above all, agonizing. My sister, Melanie lost a baby 12 years ago. His name was Matthew and he lived for 12 hours.


Her only son.



You could say that sometimes bad things happen, and draw little analogies about life's challenges, but it doesn't help when you're the one suffering. I'm going to draw little analogies anyway.

A few weeks ago my daughter filled the car up with Diesel gas. It felt like a catastrophe at the time, but out of all the stress and worry we found something we've been looking for for a long, long time--a decent mechanic who we can trust 100% and who makes house calls and who only charges half the price of other mechanics. And who, when we said, "Thank you for your help," he said, "Thank you for the work."  

And like last week when my hub lost the remote control . . . he was tearing the house apart, meanwhile my boys couldn't change the channel so guess what they were stuck watching? The 700 club with Pat Robertson. Seems like a bum deal for a 12-year-old boy, but you know what they said about it?

"I'm kinda glad dad lost the remote because we got to watch all these miracles of Jesus Christ."

There's a moral here. There's a definite moral here. When bad things happen we often find what we've been looking for, and we get to watch the miracles of Jesus Christ.



God blesses the broken road that leads us back to him.

Meanwhile, the broken road smarts something fierce at times, and we need to try to soften those blows.

So I told my sister about Amy and the first thing she said was, "I want to make her a quilt!" She already had a lot of material because she's been collecting flannel for a while now, hoping for an opportunity to bring comfort to those who are going through the same loss she did.






Below is the fabric she chose to make the blanket for Amy. She chose white, which represents purity and the heavenly place where Ella now resides.


This is the finished product, which I mailed off to Amy this morning.



My sister and I decided that we would send Amy a small receiving blanket--the one pictured above--that she could keep forever.  Something just for her.

But we are also going to make a Magic Baby Quilt, which, when completed, we will send to Amy to kick off our Sisterhood of the Traveling Magic Baby Quilt project.  She will keep the quilt as long as she needs to, until she finds the next recipient--someone going through the same loss--and then she will pass the Magic Baby Quilt along.

And so on and so on and so on.

The magic will be grow stronger every time a mother receives the blanket and passes it on.

Along with the Magic Baby Quilt, there will be a Magic Baby Book. We will call it something like Letters to Heaven. Each mother who receives the notebook will write the name of her child in the book, along with a letter to her child. After a while, the book will be filled with letters to Heaven, which will hopefully be cathartic and bring comfort to many mourning mothers.

Questions?

How will the quilt be made? What will it look like? I was just getting to that.

The quilt will be made up of flannel fabric sent in by you. If you've lost a baby, or even an adult child, I am asking for you to send me flannel fabric--as much or as little as you like--which represents your child, along with your child's full name and birth date. We will cut the fabric into quilt blocks in honor of your child. We will then print your child's name and birth date onto clear iron-on decals and iron it into the corner of their quilt block(s).

I am thinking big. I want a lot of material so we can get a lot of baby quilts circulating.

I'm soliciting material from people I know who have lost a child, but if  you've lost a child or know someone who has, please spread the word and join our efforts.

If you would like to include a letter to your child before the magic book is delivered to Amy, please email the letter to me at ctddiaries@gmail.com.  You can also send the letters snail mail. Email me for my address.

Look to it, peeps!


P.s. To keep updated on Amy's story, you can find her on my sidebar at My Infernal Journal.