“A Pair of Shoes”

Who Would Want These Awful Shoes?

Someone recently sent me this poem and it really has helped me.  If you are my people, I hope it helps you.

“A Pair of Shoes”
Author Unknown

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.

Happiness Loves Company, Too

19 Chickens and Counting

People have asked me, over the last 20 years how I get up in the morning while knowing that my child is dead and I can’t have any more. They expect me to be some sort of zombie or in a mental hospital. My answer to them is that I just try to make the most of my life here on Earth because my son was robbed of that opportunity. It would be an insult to his memory to not be grateful for every minute I have here, so being bitter and miserable is not an option. Poisoning my body with drugs or alcohol has never been an option in my life. I have little patience for people who do that and oddly, most of the people I knew who did that had a lot less of reason to do so than I would.Some people have asked me how…

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A House of My Own – Sandra Cisneros

One of my favorite authors. One of my favorite books. The House on Mango Street, by Sandra Cisneros. I am hearing the little girl’s voice in my head.

A House of my own.

Not a flat. Not an apartment in back. Not a man’s house. Not a Daddy’s. A house all my own. With my porch and my pillow, my pretty purple petunias. My books and my stories. My two shoes waiting beside the bed. nobody to shake a stick at. nobody’s garbage to pick up after. Only a house as quiet as snow, a space for myself to go, clean as paper before the poem.

The Last Thanksgiving (from the archive)

The Last Thanksgiving

Current mood:thankful

This time of year brings back very good and very bad memories for me. I try to concentrate on the good. Sometimes the bad just creeps in like horrible background music at an otherwise pleasant brunch.

Thanksgiving that year was supposed to be spent at the home of my then-husband’s employer. He was in the radio industry and announcers at that particular radio station were close friends. He acted as if there was an unwritten rule that if the boss invites you to his second home in western Massachusetts, you went. There was no such rule.
But this was to be our son’s last Thanksgiving. I was sure of it.
Our son, who for the year since his first Thanksgiving struggled with the basic functions of living, was not doing well. MRI reports showed that the disease we were told he had when he was two months of age was getting worse.
I insisted that we stay home. Our once beautuful but now crowded apartment would be safer for Jamie than the two hour car ride and cold, lake front house. To that my then-husband said, “Just because his life is ending does not mean mine is.”
I stayed home (after some tears) and he left. I invited my sister and friend Flo to come spend the day with us. I made a turkey and we took turns taking care of Jamie. A nurse who was scheduled to come bailed out on us but we didn’t mind. Another nurse who cared about Jamie stopped by our little Boston condo to say “Happy Thanksgiving” to him and give him a kiss.
He had just gotten over a respiratory infection. He was actually feeling a little better that day. We sang to him, held him and read to him, in between suctioning and respiratory therapy.
I said a prayer. I thanked God that I got to be with him that day and that his eyes were open and he was responsive.
The few days that followed were not so good. He was increasingly fussy and restless and his respirations were different. Jamie perked up immediately when his father finally came home that Sunday. Jamie was 15 months old and had distinct preferences in the people around him. He missed his Dad. His father’s voice always made him look or smile, when he did smile.
I don’t know how I hid my hurt or resentment but I just did. I knew something was wrong. Nobody ever believed my instincts before my son was born but it was different now. My instincts were always right and nobody wanted me to be right, and I can’t blame them. My son was living his last days on earth. I knew it. If Jamie’s father had believed me and not dismissed me as ‘melodramatic” he would have been there, with his wife and son, saying thank you to God for the blessings we had and spending 4 precious days with his son. I knew he would be sorry for going to his boss’ house. My friends told me that I am not responsible for his actions and what were to be his regrets. Still, I felt to blame.
Jamie died 4 days later.
Thanksgiving has never been the same since. I still thank God for my blessings but this time of year cuts through me like the cold Boston wind off of the harbor. I miss him. That was one of the two best Thankgivings I ever had because I had my son with me.

Now, the chill wind reminds me of funeral flowers and burying my 15 month old child in warm clothes in the hard earth of Westview Cemetery in my hometown of Lexington. I try to think of all of the fun I had with him but November will always bring memories of the kindness of strangers, the tears, the loss. Going home the night of his memorial service and crying like babies, my husband and I, next to the empty crib.

It is many years into forever and I still remember every inch of him. His beautiful blue eyes, his golden hair. His voice is always with me. And for that, regardless of the pain, I am thankful.

Living with the Suicide Disease

I have a condition that is subtitled “The Suicide Disease” (Trigeminal Neuralgia). Wikipedia actually has an easy to read, accurate, description of it. It is really hard to treat and destroyed my old life in many ways, yet it led me to a new life. I am finding it hard to be grateful to an illness that causes me pain almost every day. But God has His plan. I NEVER believed that before. I didn’t like it when people said it to me after my son died. Or when my uncle died. Or when my aunt died. Or when I found out I could never have a baby.

But I believe it now.

SON OF A …. THIS %$&*^$ HURTS!!

Even though I am a Christian and try to live my life for God now, when the nerve pain in my face flares up, that is about the only thought that is in my mind. For the first two years with this horrible condition, I was on narcotics, (along with anti seizure and anti viral medications that I take to this day) basically to save my life to keep me out of pain that might make me depressed or suicidal. I had nothing in my life but the pain and my precious dogs. Everything else fell apart. I was starting to understand the nickname of this horrible condition. 

I have a condition that is subtitled “The Suicide Disease” (Trigeminal Neuralgia). Wikipedia actually has an easy to read, accurate, description of it. It is really hard to treat and destroyed my old life in many ways, yet it led me to a new life. I am finding it hard to be grateful to an illness that causes me pain almost every day. But, God has His plan. I NEVER believed that before. I didn’t like it when people said that to me after my son died. Or. when my uncle died. Or, when my aunt died. Or, when I found out I could never have another baby. Or, when my husband left me because of that, and went and immediately “found” someone to do that with, and did, just that. Good times.
But I believe it now. Even though as I type this, I am laying so my face is propped up against a heating pad, I would NEVER take my own life. Being the mother of a child who died through no fault of his own, (or anyone’s) I would never harm my relatively healthy body. That isn’t the point of this blog. Some people (about 25% of patients with this disease) who don’t have the medicine that barely works for me (most of the time) do take their lives. It is impossibly heartbreaking. I pray that all of us afflicted with this find doctors who understand our illness and don’t shun us as “pill seekers.” Drug addicts, especially those who steal medicine from people like me (yes, it has happened) have never had pain like ours. I am thankful I have a doctor who knows I am not a “pill seeker” and that since I have recurring shingles in my ear and cranial nerves, that I am not having a party. My life is about living with pain and still being grateful.
I am thankful for my wonderful husband, family and friends. It hasn’t been easy. My old Myspace readers will recall me reporting friend stealing my pain meds, leading to a doctor thinking I was a pill popper. (I NEVER TAKE MORE THAN PRESCRIBED-that is a good way to be DEAD, fast). I lost a job I loved, a husband I once loved, a home I felt secure in. I have had family problems because they, understandably, tire of seeing and hearing me in pain and feel helpless. They lost patience with my dizziness, forgetfulness due the medicine, and the fog of the incessant facial pain. They despaired the loss of the “old Cherie.” Some friends have become distant, too. Still, other “friends” drop away after I refuse to share my medication with them. After I cheerfully tell them what doctors to go to for their “ailment” and offer to help them make an appointment, they disappear. I can see them coming a mile away, now. It’s pretty sad.

I couldn’t do what I used to do, at least not in the same way. My ex husband just fled. He was unsympathetic and had already seen me through infertility issues (and actually cited that reason on the divorce papers) and just bailed, regardless of my standing by him for nearly ten years of  the incurable Ulcerative Colitis with which he struggled. I wouldn’t do anything differently. I take my vows seriously. I have never left anyone I have promised to take care of for life. The stress of his cruelty (he made fun of my balance problems and hearing loss that came with the Ramsay Hunt Syndrome that caused the “Suicide Disease.”) and desertion made it all worse. But, after everything I had endured in my life, I was not going to let some jackass ruin the rest of my life. Crying makes the symptoms worse. Laughing makes them bearable. I stopped crying eventually and looked at my life in front of me. 

I thought I was doomed to have nothing but the pain and my dogs. Feeling supremely alone, (on the advice of my MD and some friends, and with my parents blessing, since they couldn’t help at the time) I packed my car and moved to a warmer place that would take me and my dogs.
Somewhere I could afford on my newly slashed income. After meeting some horrible people, and some true angels, something wonderful happened. 

I started doing things for others. I was getting involved helping the shut-ins in my new little community around the holidays. I walked my beloved dogs. I got out of my own head. I made some friends. Had my heart bruised a little. Went on horrible dates.  I wrote blogs about them. Writing helped me cope. Comedy and laughing still help me to this day.

 Then, just when I concluded that most men out there are after one thing–I ran into a miracle.  A strong, handsome man, who had never married, had no children and DID NOT WANT ANY, but loved them. In fact, he was studying to be an educator. Shortly after our first date, he was about to don a Clifford the Big Red Dog outfit for a school assignment. He could write and speak complete sentences and wasn’t a scoundrel! Well, not anymore, anyway. His friends have assured me he had his moments as a ladie’s man. I am glad that part of his life is behind him.

I couldn’t believe I met a man who understands me, takes care of me when needed and I take care of him whenever he needs me. I never thought I would laugh again. Boy, was I wrong.
Plus, the dogs approved.
I never thought I would trust a man again. But, I was sent a man who accepted me AS IS. He loves me, not just my “potential.” It took some soul searching, but I eventually concluded that if this amazing man can love me at my worst, to paraphrase a fake Marilyn Monroe quote, he deserves my best. I took one more chance. 

We now have a combined family of real family and cherished friends. When I am down, they are there to delightfully distract me.  Meditating in prayer helps me deal with the “mind numbing” pain. Bible study helps me put my pain in perspective. Jesus and Job had it worse.
I now live in the most peaceful place I have ever lived.
It is quiet and the pace is slower. I miss having my friends and family close by but thanks to my smartphone they are always in my pocket. Now, with Skype and video calls, we really can feel close until our next visit.
I have found a new doctor up here in the country and he is determined to help me control this pain and help restore as much of the “old Cherie” as humanly possible.My dogs loved it here when we moved. Sadly, my Yukie (the white dog pictured above) passed away suddenly in 2010. He lived his last years in a peaceful place and got to see his “mom” happy. We got “Harlan” a few months later.
One of the most surprising parts of my journey is my affinity for chickens.
I had never met a chicken before March of 2009, now I have a little flock and absolutely love raising them. I sell the few extra dozen eggs when I can to friends here in town. Their eggs make my cupcakes really special, and I give them as treats for my husband’s students.

Ironically, none of my new life would be possible, I suppose, without “The Suicide Disease.” In a way, it actually gave me a new life. 
I may have the “suicide disease” but I wouldn’t miss a minute of my life, just the way it is.
**This was written before my twin sister came down with the same illness, four years later. I am glad I am able to help her know what to expect. 😦

Country Living vs. City Living

This a list of observations since I am not only a Yankee, I am a city girl. I live in a pretty part of Kentucky. It is peaceful but I am still in “culture shock.” I will be updating this list frequently, as events occur.

City Living: I stepped over a drunk to get to my apartment once.

Country Living: No drunks in the yard, but plenty behind the wheel of every type of vehicle known to man. Defensive driving is a survival skill.

City Living: Sometimes I couldn’t find where I parked my car.

Country Living:  I have to look behind me when backing out to make sure I don’t run over one of my chickens or the neighbor’s dog.

City Living: Rats frequented the alleys and near dumpsters.

Country Living: If you don’t get an exterminator or set bait down, mice will live inside your HOUSE. One jumped out at me when I was going for a fork. I jumped out of my skin and finally, my DIY husband admitted defeat and we called a pro.

City Living: If a domestic animal is run down by a vehicle, people are sad and might call the Public Works department so people don’t have to see the remains of the poor creature get pulverized by traffic.

Country Living: That’s what buzzards are for.

City Living: If you go 30 miles over the speed limit, you could get a very expensive ticket, raise the points on your insurance, and if you do it more than once you are in real trouble.

Country Living: What’s a speeding ticket? I see Cletis and Jimmy Joe hauling ass at about 80 mph on surface roads without a cop in sight. From the state of their vehicles, they have no job. Where they are rushing to is anybody’s guess.

City Living: Yearly inspections on your vehicle. Yearly excise taxes based on the book value of the car.

Country Living: You get your car inspected once. ONCE by someone who works in the office of your county’s registrar. Usually it’s a secretary. No mechanical inspection. I suppose they just need to make sure it has 4 wheels and doors that close. Excise tax? Here, I don’t think that would be a good revenue stream, judging by the clunkers I see on the road, including mine.

Dos and Don’ts When Dealing With Someone who has Lost Her Child

The best thing to say in almost all situations like this is “I am so sorry.”

Dealing with someone who has experienced an unspeakable loss (of a baby or child of any age) is often difficult for friends and family. Here is a quick guide for dealing with those who are suffering. These are my experiences, all are true. My son died  of gM1 Gangliosidosis after 15 months and three weeks of life. 


  • “Are you trying to have another one?” -As if a replacement will help.
  • “What did you do to your HAIR, I HATE it!” -shouted at me  the day after my baby died, as I opened the door to a now departed relative. She had avoided me while my son was dying.  This was in response to a short, dark hair cut. My hair was not a priority at that moment. Apparently, it horrified her and she just had to let me know. In short, use your brain.
  • “Oh, I forgot. The rest of us have NO problems compared to YOURS.” -a relative’s favorite response to any attempt by me to put any problem in perspective, even if I don’t mention my late son.
  • We KNOW!” in an exasperated tone, when expressing grief or your new-found (or old) pain at attending (or refusing to attend) baby showers or infant/toddler’s birthday parties. Sadly, very close family were the worst offenders.
  • “Maybe God meant for you not to have a child . . .” (after a death of a 15 month old and many years of frustrating, failed infertility treatments.) Again, a close relative.
  • “At least you didn’t have time to become attached.”  (Blink)
  • “You are so lucky you don’t have kids!”
  • “You can have another one, can’t you?”
  • “Oh, you can’t? Why don’t you adopt!?”
  • The disease (that killed your son) only hits 1 in 100,000? You should play the lottery!” {THIS WAS SAID TWICE}
  • “Wow, you have the worst luck.”
  • Nothing. The pain of people simply dropping out of one’s life as if their child’s illness  and death is contagious to their children is horrible. 
  • “Are you still upset about that? It has been # months/years.”
  • “You really should keep your grieving private. Just between you and  your husband.” (said to someone I know)

BONUS: If a child is dying: DO NOT SAY THE FOLLOWING:

  • Have you gained weight?  – another relative. Ignoring my child, who we brought to a family function because nobody wanted to come to visit us in the city because of the parking. We had to bring our nurse and a portable oxygen pack, but really, my weight was the REAL issue.
  • If you are an MD at a teaching hospital, please don’t make guesses at the baby’s life span to your med students as if he were livestock in front of his 23 year old mother.
  • Again, if you are an MD, don’t say, in response to a missing immunization card, “it’s not like he is going to be going to kindergarten!” Dr. Lynne Karlson of New England Medical Center‘s Floating Hospital said both comments to me. I was stunned at her lack of humanity. I still am all these years later.
  • Just keep praying for a miracle. (in a tone implying that we haven’t prayed hard enough–not helpful)
  • And my personal favorite: “You should be happy you will have an angel in heaven now!”

It has been a long time, but I still bristle at the thought of those comments.

I learned that the people you THINK will stick by you might not, but God always puts someone else in your life to take his or her place. I have seen it happen over and over.

Don’t Discourage Talking About the Loss

Sometimes, people who think that they are doing the grief-stricken a favor by urging them NOT to talk about the death are thinking about themselvesTHEY don’t want to be uncomfortable so they attempt to make the one who had to bury their loved one feel guilty for sharing their feelings. If you don’t want to listen, read a blog, or look at a photo, don’t. But, keep your feelings of discomfort to yourself and thank GOD that you only had a millisecond of it, and not a lifetime.

The last thing someone dealing with grief needs is guilt about how their feelings effect YOU. It is not about you. You will be dealing with grief someday yourself so try a little empathy.

Sometimes just acknowledging that the grieving woman is having a bad day is enough. Birthdays, death anniversaries, holidays are often very hard for someone who has lost a child. Some people go overboard, but most don’t. Tact and kindness go a long way here.

If you are dealing with grief yourself and don’t like the way someone else is dealing with their grief, recognize that people grieve differently and keep your negative comments to yourself.


The best thing to say in almost all situations like this is “I am so sorry.”  A hug is nice, too. Or, if you are so inclined, “. . .tell me about your son/daughter.”  It won’t make your friend worse. If she cannot talk about it, she won’t. More likely, she will be delighted to tell you about her child. One of the worst things about losing a child is the fear that he or she will be forgotten, even to the parent herself. Talking about it at times, helps.

How are you getting along? If you need to talk, I’m here.

And mean it. Like almost everything in nature, feelings need to be let out. If they don’t, they fester and explode or worse, back up and become poison. Listen to your friend. Ask her how she is doing physically. Encourage her to take care of herself. Sometimes, grieving can lead to depression, drug or alcohol abuse, or even suicidal thoughts.

Keep an eye on your friend. You can kindly steer the grief-stricken friend to talk about other things if you think she is stuck. Or maybe get her a book like How to Go On Living When Someone You Love Dies, by Therese Rando. 

Isolation makes everything worse. If you care, listen. It will do wonders. Invite your friend to do things to get her out of the house. Scrapbook parties, exercise classes, shopping, comedic movies, walking your dogs–anything is better than sitting in an empty house.

Keep asking. Sometimes she won’t accept an invite. But she will come around. Don’t give up.

Take it from someone who knows. Losing friends along with a child just adds to the tragedy. Don’t let it happen.

I love you. Everyone needs to hear that. ❤

Me, Who?

This is a look back. My life today is wonderful and I am grateful to God for every day.

It’s not easy to know what is true for you or me
at twenty-two, my age. But I guess I’m what
I feel and see and hear, Harlem, I hear you:
hear you, hear me—we two—you, me, talk on this page.
(I hear New York too.) Me—who?
—Langston Hughes, “Theme for English B”

I read those words as a young woman, in college for the first time at around twenty three years of age. I was too old to be in college, I thought.  My 15 month old son had just died after a lengthy, fatal illness. I didn’t fit in anywhere. The question, “Me—who?” was one I was asking almost every day.

I was definitely a daughter, sister, niece, granddaughter and friend. But the question didn’t go away.

There was a reason I questioned my identity so much just then. My sense of self was damaged from the ordeal of caring for and losing a precious baby. I was unsure if my husband wanted any more children and it was unclear by my history of infertility if I could even have another child even if he wanted one. I wasn’t even the same woman he married. I was stronger. Fearless in someways but scared of more loss but really, what could be worse than losing your child? I found out. Losing your child and your husband within a few years of each other.

Was I still a mother? I was no longer a wife. Would I ever be a mother or wife again?

I was every woman’s worst nightmare. I was happily married, gave birth to a beautiful baby boy and even though he looked perfect, he had a fatal disease that took his life. Worse still, it was genetic between my husband and me. Meaning, if he met a woman on the street and had a child with her, he would have an almost 100% chance of having a healthy child with her.

And he did just that within a few short years after I read the question, Me—who? I was replaced utterly. She even worked at my old job. Had a healthy child for the man I once adored completely. The man whose child I bore. My heart broke. I was a failure as a woman in that man’s eyes and I feared, the eyes of those closest to me and even strangers on the street. Friends chose their sides. More loss. I rallied and made a comeback but I was hollow. Nothing I was doing then made any sense until I finished college.

It took me years to heal.

Am I still a mother? Before you say, “of course,” think about it. You are sitting with a bunch of women who are chatting about (complaining about,usually) their children and the subject of childbirth comes up. Someone describes a situation you encountered in your labor and delivery but do you share your story? Or do you become quiet because you don’t want them to ask you the typical questions such as, “how old are your children?” or “how many do you have?” You don’t want to see their horrified or shocked reactions to your truth. So you stay quiet. You are a mother in secret.

Then when someone learns you had a child who died and your husband left you for someone he worked with it is awkward. People so don’t want to be you they avoid you. They don’t want that fate!
Nobody says, “when I am a little girl I want to bury my only child and have a man I love grow away from me and leave.” It can be a very lonely place. I am someone nobody wants to be. Ever.

But, I don’t let it get to me. I am my son’s mother certainly and my identity has been shaped by my son’s birth just as surely as any other woman, but people don’t want me to own that part of myself. It makes them uncomfortable. They want me to move on. They want a tidy ending for me. It makes them angry at me at times. It sounds kind of mean but it happens.

In a way I got my own happy ending. I am grateful to God that I finally found a man who loves me even though I cannot bear children.  He actually just wants me. So, the answer to “Me, who?’ became clearer.  But the “mother” question nags at me.

So, what am I to do?

I pretend that I am just a childless woman who has dogs, a cat, chickens and a loving husband. The mother part of me is still there, but not doing anything, like an old, rusted car in the yard.