Sunday Synopsis

Changing early pregnancy etiquette– I like this article because it keeps on the theme I”m seeing more and more of in mainstream media- let’s talk about our losses!  espeically miscarriage- the hush hush secret.

THe healing power of animals.  This is like my story, sort of.  We got our puppy six months after Mabel died.  I needed something to love and mother.  It’s not a save-all.  Getting my puppy doesnt undo the grief of burying my child, but I found comfort in it.  Do you have an animal in your life that has helped you in your grief?

I hope that you never know.  I love this article for addressing the grief olympics that sometimes comes in the bereaved world.  I also love that it says “be there…even when you are pushed away.” to those who want to support us.  I can’t say how important this one line is to me.

Couples who chose not to have children are selfish, Pope says. Not to bring in any debate about religion, but any thoughts on this?  I think of couples who lost babies to due multiple miscarriages, due to life limiting conditions, due to stillbirth, due to reasonless reasons.  What if they choose not to go through the pain of another pregnancy?  What of the couples who struggle with infertility?  There just feels likes there’s too much behind being childless for people (religious heads or not) to judge.

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Radio Silence

Well, the day came and went. It’s now 369. In a way no different from day 365 and yet in a way very different. The day was symbolic, of course, and to borrow a term from my pilot brother, I have been radio silent since as I recovered from and sorted through my emotions.

I spent the day doing not too much- sat on the couch, took Muppet to the dog park and did some light cleaning. I took out Mabel’s box- or boxes, the bereavement box we got sent home from the hospital with, the box of pregnancy related things I had kept, the box of cards and what nots I had saved. I got a little teary eyed looking at her outfit- the pair of pants she didn’t even wear because she was too small. They had pockets.  FullSizeRender_2

Her hat still had strands of blond hair in it- which made me smile because the lock they cut for keepsake looks brown. I opened up the tiny blood pressure cuff and held it to my face- I swear I could just catch the scent of her.

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I packed it all back up and organized it the way I want, keeping her bereavement box in our bedroom and putting some of the other stuff away in a closet.

We visited her grave and brought a balloon- Chris unknowingly bought a Hello Kitty one, but we figured she’d like it.  By the time we got to the cemetery, one of the letters fell off and so it read “Happy Birthday abel.”

The evening we had a few friends over- which turned into a few more- and had dinner and cake.

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Singing Happy Birthday to my dead daughter actually didn’t feel so good, but it seemed like the logical thing to do. We watched her video and my friends got teary eyed, while mine remained dry. I realized I don’t like to cry real tears in front of people. I was reminded of how in the immediate days after her death, with family filling the house, I would sneak up to my room to cry unwitnessed.

My tears came the night before, triggered into a meltdown when one of my midwives messaged me about how on the eve of her kids’ birthdays she often thinks about what she had been doing way back when, and how hard it must be for me to do that. The message was sweet and needed, opening up the flood gates. I didn’t have a good cry again until I crawled into bed on Sunday, crying about some of the disappointments from the day- the people I didn’t hear from. Crying about how my life and relationships had changed so much in ways that I felt I so sad about. Crying about how my daughter was dead-how I have a dead child.

I’ve spent the next few days sorting through it all- trying to focus on all the kindnesses, the so many kindnesses that came with the day and not be consumed by the sadness of disappointments (some of which I’ve since decided were justified, some of which were not).

So in that vein, I want to share with you all some of the many Random Acts of Kindness. There are too many to even list, many I don’t even know about and not enough words to thank those who have done them.

  • Donations to children’s museums- in CT, in RI
  • Cupcakes to my care team- the practice I work for, the midwives who cared for me, the MFM docs who cared for me, Labor and Birth, the NICU
  • "we wanted to thank those who so beautifully cared for her and for her family while she was here (the amazing midwives of [the group that cared for her], everyone on Labor & Birth, the NICU staff, the MFMs who were involved and the group Meg works with.) They will be eating birthday Karate Carrot cupcakes."

    “we wanted to thank those who so beautifully cared for her and for her family while she was here (the amazing midwives of [the group that cared for her], everyone on Labor & Birth, the NICU staff, the MFMs who were involved and the group Meg works with.) They will be eating birthday Karate Carrot cupcakes.”

  • Flowers at Mabel’s grave
  • play dough too!

    play dough too!

  • Carrot soup
  • Books that showed up as gifts (including the one on the right that came from unknown sender)
  • did any of you send the Help Thanks Wow book?  it came without a sender...

    did any of you send the Help Thanks Wow book? it came without a sender…

  • Gifts for children’s hospital in Boston and Indianapolis
  • Shoveling neighbors snow in Massachusetts and Connecticut
  • cards! so many cards!
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  • Donation to help migrant workers and their families in Florida
  • Diapers and kids treats donated to a homeless family in North Carolina
  • Donation to a Down Syndrome organization in Virginia
  • A children’s book donated to my town’s library
  • Letting people go ahead in the airport line
  • Buying ice cream for the kids at the next table
  • Dinner buying for a cancer survivor
  • Baking carrot cake for a friend
  • Coffee bought for people in line behind the buyers
  • A big tip left for waitress, a big tip left for a bartender who is fostering a baby with Down Syndrome born addicted to heroin
  • A donation given to a homeless man in a wheelchair
  • A donation to the Perinatal Mental Health task force in LA
  • Water bottles given out to strangers in LA on a very hot day (hard to conceive in chilly new England)
  • A carrot hat given to me
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  • Presents donated to a local shelter including a carrot stuffy
  • Donation to a high school lunar rover team in CT
  • Handmade carrot wreath for my door
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  • Letters from Thai high school students
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New Year, New Necklace

 

My cousin asked me “Do you have any New Years Resolutions?”

I quickly answered, “No.”

But I’ve been thinking about this more as the days pass. I was never much one for resolutions. I do remember making some in college- one of which was to be nicer, which several of my friends are adopting this year (though I find it a little humorous, because they are my friends. I think they are nice anyways). A lot of people put exercise on their resolution list, and as much as I support good exercise, I sometimes get a little annoyed because, as a regular gym goer regardless of the season, my familiar territory becomes super crowded. As this article suggests, priorities change after trauma and loss and they can be reflected in our resolutions. Yes, I may vow to eat more vegetables, but I’ve been doing that everyday- New Year’s doesn’t change that for me. Instead, despite my quick response to my cousin, I might have a few resolutions.

 

When I first lost Mabel I was so hungry for support, especially from people who had been through something similar. I joined lots of facebook groups-Down Syndrome Bereavement Group, Grieve Beautifully, Loss Parents Walking Alternative Paths, All That Love Can Do <3, Remembering Our Babies After Stillbirth/Neonatal Loss and Life After Loss of your Baby/ Surviving Stillbirth/Neonatal Loss. These groups helped me immensely in the beginning, but I’ve found they bring me down lately- a lot of people in stages of grief that are painful for me to observe. So I’ve stopped following them.

 

I’m taking down Mabel’s sign at work. I originally put it up to help ease the burden of people asking about the baby and saying painful platitudes in response to the answer. Plus, I’m not sure people are reading it anymore. I still get an occasional “How’s the baby?” and I can now easily say, “I have sad news…” I can do it without being tearful and can redirect the conversation back to the patient. Oddly, I don’t always want to talk about her in the exam room anymore. I still have one month of overlap- last January I was heavily pregnant and so I may still see some patients who saw me last with child and they may ask, but now I’m readier.

 

I’m going to work on my anger. I find it’s turned me into a bitter, jealous person. Recently at my December babyloss support group, my anger was evident and there were new people at the group. Though it’s a safe space to be able to express our feelings, I fear that my anger scared some of the new people who are far earlier in their grief. I also heard of someone I know who not long ago had a miscarriage- and my thoughts about it were horrific. I, who supports loss is loss, had trouble finding sympathy because this person had a living child. I was angry that she had even tried for two children when I’m still waiting for one living one. What kind of mean, bitterness is that? It’s not who I want to be.

 

I’m going find some peace at work. I constant fear, especially as the one year anniversary approaches, that my job will pressure me to go back to doing call. All I can say is I’m not ready right now (will I ever be?). I need to address this fear so I can continue my job peacefully.

 

I’m wearing a new necklace. I have been so kindly gifted many necklaces for Mabel. The first one I received I immediately put on and wore every day since, despite the little carrot charm falling off every now and then.

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So I received a new one- very similar with the carrot, but this one with color.

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I think it reflects how I want to feel this year- adding a little more color into my life. Embracing gratitude, be less angry, finding some peace.

 

So my resolutions? New year, new necklace.

Do you have any resolutions?

Would you rather know?

The thought came up in my bereavement group. Someone said they just wished they were told that babies died- that these awful things can happen- hearts stop beating in utero, water breaks too early, placentas abrupt, birth defects are incompatible with life, babies are deprived of oxygen in labor. Being someone who knew that babies die for all sorts of terrible, but not common reasons, I can’t identify with that wish. In some ways I wish I didn’t know. Of course, I sought information and am thankful I knew what I knew so I could prepare. But in general, I’m not sure all pregnant women want to know. And as a provider I’m not sure I want them to know. There are some things, yes, I think it’s important they know- ones that they have control over or can test for, but the unpredictable? I don’t think I want all my patients living in unnecessary fear. I’m sad I missed out on the blissful ignorance of a first (or second, or third…) pregnancy. I thought it was bad enough having extra information as a midwife, but then being given the actual knowledge that my baby might die, I never really enjoyed being pregnant in the way I wish I could. I’m not sure I ever will.

I had a patient- an educated one, a nurse in fact, in front of me for her first OB appointment. I was doing my usual spiel when we got to genetic testing. I don’t have endless time, so I try to summarize and simplify the issues as best I can. She had no risk factors, so I talked of a test that can detect the risk of having a baby with Down Syndrome and trisomy 18 and 13. I usually qualify the statement, explaining most people are familiar with DS, but the other trisomies can be more severe and those babies don’t often survive the pregnancy and rarely live into childhood. I talk much more in detail about them if people ask (surprisingly few do), but it is important for me to let people know what they have the chance to test for. If a woman declines testing, I have to ask “If you knew you were going to have a baby with DS or a trisomy, and you knew that baby wouldn’t live, would you terminate the pregnancy?” I am pro-choice (pro-information!) and just need people to be comfortable with their choices. And sadly, medically legally, this question is important. There have been wrongful life cases in Connecticut (talk about sad, people suing their providers because they wish their living child had been terminated). I need to document their wishes. I don’t even cringe when people say yes, they would terminate a baby with DS. But I have a problem when people declines testing because they think it won’t happen to them.

The patient sitting in front of me said she didn’t want testing and when I asked my standard question, “If you knew you were going to have a baby with DS or a trisomy, and you knew that baby wouldn’t live, would you terminate the pregnancy?”

She responded, confident that her age of 33 put her at no risk, “Well, that’s really only a concern when you’re 35, right? And I have no family history.”

After a few more failed attempts of trying to get her to understand that it can still happen despite no risk factors I finally said, “Well, I had no risk factors- I was 33 and had no family history and I still had a baby with a trisomy. So it can happen to anyone. What I need to know is would a trisomy diagnosis change your management?”

I hated bringing Mabel into the conversation, but she just wasn’t getting it. I felt she needed to know.

I had another patient with a subchorionic hemorrhage that kept getting bigger and bigger each week in early pregnancy. She had two late first trimester miscarriages and had been about to pursue IVF when she found herself spontaneously pregnant. As the hemorrhage grew, we providers all held our breath, thinking this pregnancy might go the way of the others. If she remained pregnant, it was so big she was at risk for placenta abruption in the second and third trimester. She was educated too- another health care professional and said to me as I expressed some of my concerns “We are just taking it day by day.” She is still pregnant, in the second trimester. I have mentioned placental abruption, so she knows. But I haven’t gone into detail, saying I’ve known people who had such a case and preterm babies who died. She didn’t need to know. Or perhaps she did know, she just didn’t need to hear it harped upon by me.

So how much do we tell pregnant women? We can’t induce everyone at 39 weeks because some babies’ hearts stop at 40 weeks. We can’t do c-sections on everyone because babies’ hearts can stop in labor. There are risks to those as well. I don’t even tell women to do kick counts daily- it only increases worry. Do kick counts when they are worried, I tell them. Women know their babies best- if baby isn’t moving like normal, then take the time. This is the struggle I have as a midwife- I know the bad that can happen. But I also know most of it is unpredictable. So I take this burden on myself; I worry for my patients, so they can have the blissfully ignorant joyful pregnancy that they deserve. Worrying about unpredictable things can only increase stress and cortisol levels, which isn’t good for moms or babies either.

(disclaimer: I don’t mean to minimize anyone’s anxieties around loss, especially once you’ve experienced it. once you’ve known loss, worry away! You’ve earned the right to worry, even if it’s about unpredictable things. Your innocence was lost like mine.)

What do you think? Do you wish you knew babies died? How would it have changed things? Do you feel the need to lecture pregnant women on the awful that can happen?

Future midwives

I’m sure I received some training on loss when I was in midwifery school. I don’t remember the specific lecture or chapter in the books, but there had to be some educational experience I received. I remember more the on the job learning. I worked as a Labor and Birth nurse while I was in midwifery school. I helped woman as they worked hard laboring for a baby that was extremely premature, that was unlikely to live, that had already died. I was scared at first- I think scared of saying the wrong thing, of not knowing what to say, of doing something that would make the situation worse.

During school, while I was working as a nurse, I remember caring for one woman who was being induced around 24 weeks, the cusp of viability. Her uterus and amniotic fluid were infected, meaning the baby who already faced significant life threatening struggles that came with extreme prematurity, also faced life threatening infection. Truth was, this baby had very poor chances of survival. The neonatologists knew this and gave her the option of resuscitation or comfort care. As her labor was induced she talked and cried with her family, with her healthcare providers about what was best for her baby. She had a family member who had extremely preterm twins who suffered many long term effects from being born so early. She was unsure if she wanted that outcome for her baby, but also could not imagine not doing something for her child. When my shift was done, she was just getting into active labor and had not decided what to do. I found out later from the nurse who relieved me, that her baby came suddenly, without the doctor even in the room, and she still had not decided. Her baby did not survive. The worst part of being part of her story, was not knowing how to help her. I know, even with all the training and experience in the world, I still might not have been able to help her decide, but maybe I could have. I’ll never know.

I have since been with mothers as the doctor couldn’t find a heartbeat on the ultrasound. I’ve had mothers whose babies come prematurely and die sometime after birth. I’ve had mothers who choose to terminate for a fatal diagnosis and a mother who has carried to term despite one. I helped mothers through subsequent pregnancies and subsequent miscarriages. Each woman I have cared for, I have learned from- more so than in any class in school. Ultimately I have learned most from my own experience.

This week I’ll be joining the program director of my local pregnancy and infant loss non profit in a guest lecture about loss to the local midwifery students. It is at the school I went to, I worked at and I still (though rarely these days) precept at. I sort of invited myself when the program director mentioned it to me- how could I not? This is what I do- I’m a midwife and I’m a babyloss mom.

As we talk to the students, I want to give them all I can. I want them to remember the talk and I hope, being given by someone who knows both sides will help. But I need your help too- I only have my own experience. I’ve come up with some points I wish to make- I know it’s not a perfect list, and so I encourage you to give me your suggestions to. I also know that these do not apply to everyone’s situation and it’s not a comprehensive list encompassing nearly everything- I am trying to look at it from both perspectives- a provider and a patient.

Tell me: What did you want your midwife or doctor to do? What did they do that was great? What did they do that you wish they didn’t?

 

Stillbirth

  • Be honest. There is no good way to say your baby is dead. Don’t sugar coat; just be clear.
    • I was with a mom with a stillbirth at term. She had been sent from the office to OB triage when the midwife couldn’t find a heartbeat on the Doppler. I sat by this woman as the APRN did a scan looking for a heartbeat. We were waiting for the Maternal Fetal Medicine doctor to come and make it official. Since he was tied up, the APRN started scanning, all of us hopeful she’d find something with the ultrasound that the Doppler could not. The room was silent as she scanned, the parents on edge, the nurses and I staring at the screen. It felt tortuous for me- I can only imagine what it felt like for the parents. Finally, because no one was saying anything, I said simply, “they don’t see a heartbeat. I’m so sorry.” I explained how we had to wait officially for MFM doc and I stayed by her side until he came. There were a lot of “whys?” and I was honest there too “We don’t know. We may never know. But here’s what we can do to try to find out…”  
  • Describe the process- let the patient know what happens next (do they want to go home, gather things, wait at all? Induce right now?) Discuss induction and pain management. Discuss the baby coming out- mention about skin color changes and bruising that might be apparent. Offer to call NILMDTS

 

General Loss Guidelines

  • Say “I’m sorry”
  • Use the baby’s name…. over and over.
  • It’s ok to cry- in front of the patient too.
  • Get familiar with the process- offer autopsy, karyotyping, TORCH titers, thrombophilia workup. Talk to the hospital social worker to learn what happens to the baby, how parents arrange services (cremation, burial?)
  • Sit. Be with patient.
  • Coo at the baby- talk about all the aspects of a baby you would otherwise- the hair, whose nose she has. Encourage parents to explore- undress baby, open eyelids. I never opened Mabel’s eyes- I wish I did, just to see the color (likely dark gray as most newborns are, but now I’ll never know)
  • Be a photographer- take photos, encourage parents to take photos. Call professional photographer. Since no one from NILMDTS was available for me, my nurse and midwife took photos- so many photos and I am so grateful they did.
  • Let parents stay with baby as long as needed. Encourage patient to call and invite any support they choose.
  • Send patient to a floor without babies for PP recovery
  • Early discharge
  • Prevention of lactation (also milk donation)
  • Offer sleep aids
  • Referral to resources- counseling, local bereavement groups, books, websites.  Go through your hospitals bereavement box, so you know what’s in it.

 

Follow up

  • Call patient- some potential questions beyond “how are you doing?”
    • How are you sleeping?
    • Who is around to help you?
    • Are you eating?
    • How are you spending your days?
    • Services?
    • Have you looked through bereavement box yet?
  • Postpartum visit
    • Plan first morning appt- so pt does have to wait in waiting room with other pregnant patients
    • Plan extra time for appt
    • Be prepared to go over autopsy
    • Discuss birth control or preconception- no judgement on whether it is “too soon”
    • Ask about photos- ask to see if she has some and wants to show
  • Remember due dates- good time to call or send a card
  • Anytime you are reminded of that patient, tell her-call or text her- she would love to know she is not forgotten
  • Attend services if you are invited and can go

 

Fatal diagnosis (if carrying to term)

  • Frequent appointments if pt desires
  • Listen to FHR first thing
  • Plan for longer appointments
  • Consider frequent ultrasound if pt desires
  • Help patient with birth plan
  • Coordinate care with specialists- NICU, pediatric specialists to discuss immediate care of baby
  • Encourage special plans- blanket, outfit, photographer for baby
  • Discuss logistics- funeral home, cremation, burial
  • Connect- give resources
  • Help patient celebrate pregnancy

 

Subsequent Pregnancy

  • may need more frequent appointments, reassurance of FHR
  • If previous stillbirth- testing (level II, NSTs, early delivery)

 

Miscarriage (also applicable with fatal diagnosis choosing to terminate)

  • Say “I’m sorry”
  • It’s ok to cry
  • Discuss logistics- expectant management, miso, D&C, D&E
  • Discuss “why” (most common known cause- chromosomal, but often we have no idea why…)
  • Listen
  • Discuss future fertility if patient desires
  • Call patient for emotional follow up (“just wanted you to know I’ve been thinking about you)
  • Referral if indicated (recurrent pregnancy loss, genetics)

What am I missing?

Friends remembering

My friend is a high school teacher and he recently posted on my facebook wall “Today in class, I reordered students seats by placing them in alphabetical order by middle name. One girl’s middle name was Mabel. I told her that my friend had a beautiful daughter named Mabel; she should wear it with pride.”

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At the Buddy Walk, a fundraiser for out local Down Syndrome congress, we walked with Jenna’s Journey- the team in support of a lucky little girl who I had the pleasure of helping into this world six years ago.  This year they walked in in honor of Mabel and Jenna’s mom had some great bracelets made.  There were many left over after the walk and I gave some of them to some of the donors to my next walk- Footprints on our Hearts, supporting my local babyloss bereavement group. The other day my friend was telling me how her daughter had taken a liking to the bracelet I had sent her.  Her daughter knew Mabel’s story- she remembered the day when her mom was really sad because of a baby that died- and so she understands the significance of that bracelet. Recently her daughter was changing and my friend noticed that she was wearing the bracelet around her ankle.

 

Nine months later and Mabel lives on.

 

Have your friends done anything in honor of your lost ones?

Christmas ornaments

Last summer Chris and I were preparing to move into what I consider our forever home. He was commuting over an hour each way to work, so we started looking for somewhere that shorted his time in the car (saving his sanity!) that was also still within a reasonable time frame for me to get to and from the hospital. If we were going to look for a house, I insisted we think long term and try to settle somewhere we want to raise our kids. I wanted good school systems. (I was validated by our choice when in the past year our town was named one of the top 100 towns in the US to live and the school system one of the top 500 in the country- don’t ask me who did the ranking, I prefer the blissful ignorance of not knowing!). We found our home and moved last August, when I was in the first trimester.

At the same time, my parents were moving out of my childhood home, a house they inhabited for the past 25 years. They were packing up a home full of five kids worth of memories, furniture and junk so they could move into a smaller retirement home with no storage. They invited me up (their only child living within driving distance) to ransack their house for anything I wanted to keep. They were buying lots of new furniture so many things were free game. I came away with a patio set, a nice futon, a dresser, a huge old dictionary with stand and a piano (for a friend), among other things. We loaded up a U-haul and drove it home. As part of the clean-out we walked through the attic and I picked up things to keep, reminiscing in the process- an old wooden kids bench, wooden blocks, old clothes. I found boxes with old photos and letters, even boxes from my grandparents, containing photos of my parents, their siblings, letters they wrote from college. I kept them all. The idea of moving these things again once I got home stressed me out a bit, but I couldn’t imagine these things being thrown away. I made it clear I wanted to keep the family history stuff.

The following Christmas, when both my and Chris and my parents were well settled in our respective new homes, I was feeling nostalgic again. Chris and I got a real tree that year- we had two fake trees in the past and it seemed indulgent and wasteful to buy a live one, even though it was how I had grown up. But in this new house, whether it was the idea that this home wanted a live tree or he was trying to please me in an attempt to bring some joy after learning the baby I was carrying would likely die , Chris suggested we get a live tree. We cut one down with my cousin and hauled it home, decorating it with the ornaments we had. Most were Chris’s- his mother had sent a boxful of his childhood ornaments when she moved into her retirement home. I had a few more recent purchases, because my childhood ornaments still decorated the tree at my parents. When trimming the tree I decided I wanted to ask my parents for my ornaments when we saw them that holiday.

To my surprise and dismay, I learned all the childhood ornaments had not been kept in the move. My parents well decorated house now bore a tree with matching ornaments- appropriate for a house with no kids.

“You didn’t say you wanted them when you went through the attic,” my mom explained.

“It was June- I wasn’t thinking about Christmas!” I lamented.

But there was nothing to be done. Chris and I would have to decorate our tree on our own, his childhood ornaments making up the heft of our trimming.

Recently I had brunch with a friend, one well schooled on babyloss, as she coordinates the bereavement program on Labor & Birth at my hospital. One thing she does is makes little worry stones out of colorful clay. While I was hospitalized pregnant with Mabel, the chaplain stopped by and we had a nice chat. She left me with her info and a worry stone, one I recognized to have been made by my friend. I used that stone lots during that time and it even became my visual focal point when I was in the painful throws of labor. After Mabel died I never left the house without it, a mini security blanket. I was horrified during one of my early therapy sessions when I was faithfully rubbing the stone and it broke in half in my hand. “Is it a sign?” I woefully asked my therapist. Hearing this, my friend gave me two more, but I really just held onto the pieces of my broken one, not willing to let them go. One piece sits in my car and I recently have been rubbing it more frequently.

half a worry stone in my car

half a worry stone in my car

At brunch with this friend, she gifted me several things- including more worry stones- in carrot clay colors. But one of the best gifts she gave me was a set of carrots on hooks. My heart leapt when I saw them and I quickly told her the story of the discarded childhood ornaments. My relief was huge, knowing now I had something of my own to contribute to our next tree.

Carrot ornaments

Carrot ornaments

Have you been gifted something especially meaningful? What would be a great gift for someone to give you?