A Map Where He Lived (Kace)

Kace, age 31
3 children, aged 7 and 5

The irony of my being able to find beauty in the natural shape of a mom’s form postpartum is not lost on me. I served a year in the military and was sexually assaulted. As a byproduct of the sexual assaults I rejected the female form. I wanted to hide and disappear into nothing, which first took the form of excessive exercise, moving on to anorexia and finally bulimia. Clawing my way out of this torture and mutilation to self took 5 years; I did so with the help of a great support system. I was dating my husband during the tail end of a very hard cycle. My husband has always been my greatest advocate and approving audience. He has found me beautiful at every stage, and encouraged me to also see beauty in me.

My husband and I fought for some time to be able to hold on to a pregnancy. The conceiving was never hard, it was the holding on to it that seemed impossible. When I had an operation to remove endometriosis, we were finally able to hold on and follow through with a birth. And boy howdy did we conceive after that first operation! Twins, a boy and girl. The pregnancy was not without its complications though, and at 6 months we were warned of Robbie’s Ebstein’s anomaly, a genetic defect of the heart, and the high likelihood of his death. We took the moments we had and held tight and we dreamed big. To do otherwise was counter intuitive to the gift of just having him in that moment.

To this day I have moments where I don’t know how to answer the question, “how many children do you have?”. In my heart, always, I have 3 children. I held 3 children in my arms, the twins on the day of their birth, and my youngest son on the day of his birth. Though I can only hold 2 of my children every day, Robbie is as much apart of my day as his brother and sister. If I answer 3 to someone who doesn’t know my story though, they look over my shoulder and I see them counting and doing a double take. There’s the follow up explanation, and the uncomfortable silence, as the person flounders for the proper thing to say after such an admission. Generally, it’s an “I’m sorry for your loss”, which is a perfectly acceptable thing to say…How, though, do I explain, in the moments of uncomfortable silence following the explanation, and the offer of condolence, that my answer of 3 is only for me. It’s not for them, for the condolences or the pity. It’s that to not include Robbie, especially in the years close to his death, is and was, like feeling his death over and over. Or more, blotting out the precious moments I held him, watched my husband hold him. More often than not these days, I say I have 2 children to those just meeting me. There is always this moment that happens inside of myself though, a thought for my first born son, when I tell myself, I have 3.

The loss of Robbie will always be a wound, a hole in my life that can never be healed, but the degree of pain has lessened…it’s not a pulsing beat that steals my breath most days, every minute. I found laughter again. I found peace, and comfort. My children are my absolute reason. That’s a complete sentence. My Reason. The days are more, the moments in time are bigger, better, because I have them, whether with me here, or above.

Robbie taught me so much in the months that I held him in me. I learned of my children in such an intimate way in the 8 months I carried them. Lexa rode very low in my pelvic area, and Robbie’s place was always at the left side, as near the top as he could get. Most of the time I had the weirdest pregnancy belly I had ever seen, the bottom taut, full of spirited little girl, and the top full of a baby boy who held on with everything he had. The center of my belly, the place where most women are the tightest, was mushy on occasion, this area of “unfilledness”. I was hooked and mesmerized. Of course they would sometimes change positions, usually during the sonogram, with Lexa being the camera hog, and Robbie just quietly being. For the most part, they held their places, bottom and top. In truth, there were moments where I was horrified to watch the changing in my body take place. The stretch marks starting way lower than I found normal, and rising up to the top, just below my breasts. There was virtually no area of my body left unscathed by carrying my babies… my breasts, thighs, hips.

There were moments I held on to. Small blessings we treasure to this day during a pregnancy that could have turned into 32 ½ weeks of mourning, of silent vigil. Because of Robbie’s diagnosis, we got to see the babies on an ultrasound once a week, an event we often anticipated. It was joy for the moments we got to see his heartbeats. See him move. We talked of the future, of what we would do when we became a family of 4. We knew the odds, and were always aware on some level of the reality. We chose though, to live with hope. I’ll always be grateful that we did.

Robbie passed away in utero. A forced birth was necessary for the health and well being of Lexa. To prepare me, my gynecologist explained what I could expect. When I was told that vaginal delivery could possibly damage Robbie, mar him, my only thought was “I can’t do that to him”. I couldn’t’t face the idea of what that kind of delivery could do to him. I requested a c-section. I felt I had to give Robbie this dignity, a gentler way of coming into this world. On the day that I was released from the hospital, we buried Robbie. The weeks following saw us coming and going from the hospital NICU, waiting for the day we could bring home our Lexa.

People mean well, I always kept that in mind. Often times though, the kindest overture feels like a knife being twisted. The phrase “at least you have one baby to hold” could make me cry in the moments no one was watching. I wanted to scream. I remember particularly a pamphlet the hospital sent home, Empty Arms. I wondered at why people couldn’t see how empty my arms were, even filled with a blessing like my girl…There was supposed to be a second child in my arms too. Twins. It was a word that would leave me reeling. To this day, when my kids jokingly tell each other when they match or say the same things, “we’re twins”, my heart can skip, for just a moment. I wanted to see the twin bond that I hear so much about, that my grandma shared with her twin Jack. I wanted to hear their special language, watch the friendship that no other could match. I wanted two birthday cakes on the same day in May, celebrating the same milestones.

My parents often visit Robbie’s grave. My mom, a blessing, has decorated his grave for every holiday and birthday. Windmills mean so much more, as I see her buy them for my son, knowing they circle in the wind for him. I don’t visit. I can’t think of him there. If I go, I only remember his death, the day they covered his tiny casket. I can’t do that to myself, allow myself to feel that pain to the point where the joy disappears. I want to remember his heartbeats on the monitor, and the times I saw him moving. The personality I felt from him, my little lion, who held on as long as possible.

Jason and I spoke rarely of Robbie after his passing. We mourned together, and cried, hung on. It was months later when I wasn’t so focused on my own grief, that I realized how tightly Jason held on to his grief, not letting it all out, so that he could give me his strength. I ache when I think about how he suffered quietly, to make sure I got through okay.

After a year we began talking of having one more child, even though we feared the loss. Again, we experienced the miscarriages and again, I had to have the surgery that removes endometriosis.

Two years after the twins, along came Nathan. I never lost the baby weight from the twins. On top of that, I gained as much weight with my little man that I had with the twins. I was forced into another c-section, as my gyno would not perform a v-bag. My body was ravaged.

When my husbands hands would travel over my stomach, over the loose skin, and stretch marks, particularly the pregnancy pooch that dragged my stomach to the “down there” level, I would flinch. I couldn’t handle him touching the ugliness. I would cover every inch I could, turn my back when I changed. He often told me he found my body gorgeous. He saw my stomach, in all its gory detail, gorgeous, because it was where our children came from. Jason would cajole, and force his hand to stay on my stomach, willing me to be comfortable with it, to see it as he saw it…and I couldn’t.

Another miscarriage. It became clear that I would have to have surgery for endometriosis every couple of years to eliminate pain. Jason and I discussed our options. In the end we decided it was best to have a hysterectomy. One more surgery that cut stomach muscles.

I no longer had feeling in stomach. It wasn’t until Nathan was maybe a year old that I noticed this monster lump under the skin. I knew immediately it was a hernia. Stealing myself against the doubt and worry from another surgery, I had it repaired. It failed 3 months later, most likely, as a couple surgeons told me, helped along by the flap of skin hanging down. I was told once you get a hernia, there is a 50% chance it can come back. It took almost another 3 years before I would carry through with another repair, combining it with a tummy tuck to give me that 10% increase in odds, a magical number of 40% chance of the hernia coming back. I was a bit excited at the idea of getting rid of all this excess. I looked forward to the physical change that this would entail. I had an immeasurable amount of shame associated with this part of my body. Not to mention I now had medical implications tied to it. Day to day living with my kids had changed. The pain was intense, often times I would have to slip away quietly so the kids didn’t see, to take care of the hernia, forcing it back into it’s rightful place.

The feelings that arose on the morning that we drove to the hospital for the surgery in the first week of March (12 days now) were ones I wasn’t expecting, or prepared for. Outside of the fear of death, which I teased about (but seriously, I feared) for a year prior, I was afraid of losing this trace of my son. It was the last physical sign of Robbie. I gripped my husband’s hand “what if they take it all, I don’t want them to take away everything”? I couldn’t bear the thought that this last vestige of Robert Hunter being carved from me. I had to do this though. I had to go through with the surgery for my kids, forget the fear of dying, and forget my last minute resistance to lose the flesh that had for years repulsed me. As a mom, I had to be physically able to keep up with them, the pain of the hernia making it impossible to do so.

Waking from anesthesia, I raised my gown with trepidation, worried over what I would find. I had joy I cannot adequately explain. Beneath my bandages, I could already see flatness to my belly I hadn’t seen since embarking on the parenting trail. Above the bandages, from belly button to breasts, in crazy patterns only myself and my husband can interpret, were stretch marks. This was the place where Robbie lived. This to me was the most beautiful thing. I had the best of both worlds. A chance to be well from a medical standpoint, and physically able to keep up with my kids. I also had an incredible bonus, the map that my son left behind for me. The surgery changed one part of me. My body as a whole though, still bears the mark of having children. I have lumps and bumps, things have shifted and somehow gravity overcame. I see now, though, what my husband tried so hard to convince me of when he held his hand to my stomach. Not because of what the doctors could change, and what was taken, but because of what was left behind.

15 thoughts on “A Map Where He Lived (Kace)

  • Thursday, April 1, 2010 at 9:56 am

    This is by far my favorite post ever, and I’ve read every day for almost 3 years.
    Your story touched me, made me cry and smile. Thank you so much!

  • Thursday, April 1, 2010 at 10:51 am

    Wow, this by far the most mesmerizing submission I’ve ever read on SOAM, chills ran down my spine over and over as I read about Robbie, your bittersweet journey, and what you endure everyday. You are so so so strong. You have such a gift for writing. You make me appreciate my body much more and realize all the things that “bother” me are so frivolous. I want to say so much, yet I am at a loss for words..

  • Thursday, April 1, 2010 at 2:27 pm

    Thank you for sharing. My heart aches for you as I smile. So many feelings. Am so glad you still have Robbie’s marks.

  • Thursday, April 1, 2010 at 4:42 pm

    Amazing, your story is so touching. So wonderfully written. Im so glad you got to keep some of the marks from Robbie. Your body is beautiful, not a lot of people can say they carried and angel.

  • Thursday, April 1, 2010 at 5:18 pm

    Hi. I just wanted to comment on how strong you are! Your son would be so proud of you for moving on as much as you could and having another child, even though it was so hard. Coming from a twins point of view, I can understand the feeling of emptiness that you had. My sister passed away soon after a premi birth. We were identical, but my lungs had developed faster. Im 22 now, and have a family of my own, but still the emptiness is there, because I was meant to have someone else here with me, and that piece of myself is missing. I hope you can one day bring yourself to visit your little boys resting place. Hopefully it will bring some kind of closure for you.

  • Thursday, April 1, 2010 at 8:08 pm

    Wow. This is such a moving post, it has brought me to tears. Thank you so much for being so brave and sharing your story. I have never lost a child, I lost my mother 1 month before my daughter was born 3 years ago and the pain never goes away. Some days its stronger than others, but its always there…random things bring back a flow of emotions when I least expect it, I suppose thats how it is with you..sometimes just out of the blue because our loved ones have such an imprint on our hearts we can move on b/c we have to but we can never forget. I recently visited my mothers grave overseas and it felt empty like she wasn’t there. I don’t want to remember her lying in that coffin or the funeral I want to remember the beautiful life she lived and how much happiness she brought to my life..so I can understand why you don’t want to visit Robbie’s grave. My deepest condolences to you and your family. May you continue to be an inspiration to your children..all 3 of them.

  • Thursday, April 1, 2010 at 8:50 pm


  • Friday, April 2, 2010 at 5:34 am

    That was one of the most touching things I have ever read. Thank you so much for sharing.

  • Friday, April 2, 2010 at 7:48 am

    You have no idea the amount of tears I shed while reading this. I also lost my son. He was 19 months old when he passed away at home in his sleep…we did not not he was going to be born with Marshall Smith Syndrome…it was not until the day he was born that we knew something was wrong. He spent his first month in th NICU. It was there that he was diagnosed and underwent 2 surgeries. We spent the next 19 months loving him, and caring for him while going to and from Children’s Hospital to see his 6 specialists. Connor changed my life so much. He made me a better person, as I am sure Robbie has made you. Even though we did not have our boys for long, they left their marks on our bodies and forever in our hearts. I got pregnant with Liam, my second, only 2 months after my Connor passed (very unplanned)…it was so early and hard. Liam will be 1 in a week, and in 3 weeks it will be 2 years since Connor passed away. I always say that I have two children. I cannot bear the thought of leaving Connor out. When I am asked how old my kids are, I say Liam’s age, and 19 months for Connor (how old he was when he passed). I sometimes say that my first passed away…but the uncomfortable silence that you mentioned is very difficult. I also know what it is like for people so say such ignorant and hurtful things. I actually had a person say to me “at least he was only 19 months, so you did not get too attached…” WOW…I wanted to rip her head off for saying that. Whether still pregnant with our child, or 19 months later, that is our child and the love is no different. I also do not like to go to Connor’s grave. It makes me relive the morning I found him in his crib, lifeless. I do not think of him as in the ground…yes his body is there…but he is in Heaven, looking over Mommy, Daddy, and his little brother. My mother and sister wrote a book just for my future children after Connor passed call, “My Big Brother My Guardian Angel”. I would love to let you know the words in this book…I will post it right after this. You are a very strong woman…our baby boys are in Heaven, waiting to see us again someday.

  • Friday, April 2, 2010 at 8:06 am

    “My Big Brother, My Guardian Angel”
    My big brother was there the day I was born, holding me tight, keeping me warm
    My big brother was there to help move my feet, as I kicked and I laughed in his old bouncy seat
    My big brother was there when I took my first step, holding my hand close beside me he kept
    My big brother was there when I said my first word, my voice but a whisper, yet loudly he heard
    My big brother was there when I learned how to get dressed, for Jesus he wanted me to look my best
    My big brother sat beside me on the big yellow bus, knowing I was embarrassed when Mommy and Daddy made such a big fuss
    My big brother was there when I went to the zoo, he showed me the elephant, lions and penguins too
    And when it was time for training wheels to go, my big brother pedaled beside me, this much I know
    My big brother was there to help me make friends, we played all together, our fun never ends
    My big brother was there when I drove my first car, buckle up, stop at red lights, stay close, don’t go far
    And when the tears would fill my eyes, my big brother would sing me a soothing lullaby
    My big brother taught me how to be kind to others, even those who are different, just like my big brother
    My big brother shows me a great many things, with the grace of God and angel’s wings
    My big brother was there, he taught me the way, how to live, how to laugh, how to love, how to pray
    My big brother does not live with Mommy Daddy and me, he lives up in heaven with Jesus and Mary
    Some kids have a guardian angel to show them the way, but I have a big brother to teach me each day
    My big brother is there always beside me, how lucky and I to have him to guide me

    written by Connor’s auntie and Nana

  • Friday, April 2, 2010 at 7:27 pm

    Thank you all for your kindness. All day I’ve visited here, wanting to put into words what I feel when I read your responses, unable to do so, coming back again. The obsessive compulsive behavior of an eating disorder transferred into being obsessive in other ways, really. Wanting to get what I feel just right.
    This website is a powerful tool for all women. I think everyone on here that posts, is so full of beauty, and the support that’s offered is amazing.
    Having Robbie for the time that I was granted, changed me for the better. He really did teach me so much, and I thank God for the moments we shared.
    I am sad it took a surgery for me to finally realize how beautiful Robbie’s map is. In the moment of fear, thinking it would be gone, it clicked for me. I want my daughter to feel that now, every moment. And for my son to see and appreciate it.

    Shannon, thank you for sharing your book with me. I believe our boys are there every step. I don’t think the teaching stops.

  • Wednesday, April 7, 2010 at 6:40 pm

    brought tears to my eyes….thank you

  • Saturday, April 24, 2010 at 2:12 pm

    I’m Stumped For Words. And Suddenly i Feel Absolutely Shallow to the point of moronic stupid. Thank you for waking me up, with a good damn blow to my head. I will now stop being unhappy with what i see in the mirror, and thank everyday for my 3 little munkees and honour each of the 3 maps, I have on my body :)

  • Monday, April 26, 2010 at 8:16 pm

    AMG…<3 That was absolutly beautiful. I hope to be able to look at my marks the same way…*sniffles

  • Friday, August 20, 2010 at 9:06 pm

    Thank you for posting this. I cannot imagine the deep pain you and your husband had to feel. I have never cried reading a blog until today. What a wonderful thing to be able to turn the loss into a deep appreciation for the gifts of life children are. I will never look at my two children the same way. God bless you and your Angel in heaven

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