May the road rise up to meet you. May the wind always be at your back.
May the sun shine warm upon your face, and rains fall soft upon your fields.
And until we meet again, May God hold you in the palm of His hand.
-Irish Blessing

Sunday, November 27, 2011

Russian Roulette

I have been transparently focused on a rainbow baby since Eli's birth even though conceiving again was like firing a loaded gun. We had no idea whether we would become parents to yet another Potter's Syndrome baby or whether we would be able to bring this one home. We did everything within our grasp to find answers and the best we could do was an eight percent chance of recurrence. It was unnerving to say the least. It was so much easier to jump into the pool again when I had been told that the first time was just a fluke. I compare our experience trying again this time to Russian Roulette though admittedly our odds of getting that bullet were a little lower. According to Wikipedia, the first shot fired out of a six shot revolver loaded for a game of Russian Roulette is 16.6% likely to be the bullet. But, if that gun is shot again without spinning the cylinder, the percentage of firing that bullet gets higher and higher. The second firing is 20% likely to be the bullet, the third is 25% and so on. Though my odds are lower, my percentage increase is about the same. After Wyatt was born we were given a 3-5% chance of recurrence, now we're at 8% and truly that is just an educated guess since the genetic (or not) pathway of inheritance or occurrence is unknown for our family and I have a maternal aunt who also passed away from Potter's.

The first four months of this pregnancy not knowing whether this baby was healthy were very trying. I compared every little symptom or lack thereof to Eli's pregnancy, searching for something, anything to either put my mind at ease or confirm my fears. We chose not to tell anyone for the entire first trimester and then only began sharing when my stomach was no longer easily concealed. We didn't even tell our daughters during the first trimester. If this weren't my sixth on the way to full term pregnancy I probably would have held out much longer. I didn't want to tell anyone about the baby until I knew one way or another. It just didn't feel right to share what should be good news and then have that worry-filled question hanging over all of our heads. I wanted to either be able to share entirely happy news or to be able to quietly process bad news and then parcel it out at a time of my own choosing, not on the day everyone knew I was having an ultrasound and would be waiting for results. We had fired the gun and had to wait an excruciatingly long time to find out whether there was a bullet in that chamber. Until we saw this baby with our own eyes there were no good answers to our daughters' questions about whether this baby would die too. Stressful is a highly understated description of those months.

I am beyond happy to be in the good percentage this time and to be able to give hope to other families who have lost pregnancies and babies, especially those who have lost two little ones to Potter's Syndrome. I scoured the internet while pregnant with Eli and after he was born looking for someone else who has walked my shoes and found the path to a happy ending. I wasn't able to find any stories with that happy ending (though I hope they are out there). Now mine is written for someone else someday.


"Invictus" is Latin for unconquered. I am invictus. I have shared that I am now expecting another rainbow baby, our first and last after our most recent loss, Eli. What I have not spoken much about are my struggles to conceive many of our rainbow babies, including Eli. A recent Redbook article about infertility has inspired me to now overshare my fertility history. I have chosen to do so because I know the pain that rainbow babies can bring for those who have lost children and have not had or are not also expecting rainbow babies. I still experience pain when I hear of pregnancies within our circle of family and friends. I also know the pain of not being able to conceive a rainbow baby the quick and uncomplicated route.

Wyatt was my first pregnancy, conceived quickly and easily. Of course, his pregnancy became anything but easy after his Potter's Syndrome was diagnosed but physically my pregnancy was pretty simple and resulted in his delivery by c-section during my 37th week. I was able to conceive quickly after his loss. My body literally snapped back into shape and I found myself pregnant again between three to four months after his death. This pregnancy was again physically easy but emotionally taxing and a perfectly plump little girl was delivered via repeat section just one year and four days after Wyatt's birthday. I became pregnant again when she was ten months old and suffered a very early miscarriage. Again, my body snapped back and after just two months I was pregnant with our middle daughter. When she was about a year and a half we began to want another child. I have charted using the Take Charge of Your Fertility "method" (TCOYF) since becoming pregnant with Wyatt and it quickly became obvious that my cycle was seriously defective and it remained so for many many months. Specifically, I had a very short luteal phase which would make pregnancy impossible. I consulted with my doctor and after a very uncomfortable endometrial biopsy I received the official diagnosis and began treatment.

Treatment for me consisted of taking clomid and monitoring for follicle development, which was not stellar, so I also needed hcg shots to trigger earlier ovulation since my cycles were still proceeding slowly. I was lucky enough to only have to do this for two months before becoming pregnant with our most robust little girl, our youngest. Last spring when she was over a year and a half, we decided that one more would complete our family. Again, I noticed some pretty serious defects in my cycles and returned to my doctor to try to preemptively straighten it out. Three months of oral progesterone was enough to normalize my cycles and the hormones within which I am convinced were out of control. I was then able to become pregnant with Eli on my first cycle trying. Overall, I've had five medicated cycles to achieve two pregnancies but I have monitored for months prior to those cycles and been devastated each and every time my cycle was completely inadequate to have even a chance at achieving a pregnancy. It has been a very humbling experience to admit that my body was not doing was it was supposed to and having to see a doctor to be able to do something which so many others do almost without thinking. I felt like a failure to my husband because my body was not working and I couldn't fix it myself. Charting is not glamorous, but for me it has been effective. Without charting it may have taken much longer to diagnose and treat my fertility shortcomings.

Why share this? Because just like with baby loss, infertility carries its own societal stigma and is all too often a hush-hush topic or one that is not dealt with in the best way by well-meaning and sometimes not-so-well-meaning individuals. One survey found that about sixty percent of couples facing infertility hid it from family and friends. Infertility is extremely emotional. Infertility and pregnancy/infant loss is extremely emotional. But these things don't have to be and frankly, shouldn't be, suffered in silence.

I am invictus, I am unconquered. Neither baby loss nor bouts of infertility have conquered me. I am hopeful, not hopeless.

To quote the poet William Ernest Henley and his poem "Invictus",

I am the master of my fate: I am the captain of my soul.

Wednesday, November 23, 2011

Giving Thanks

The first thing that came to mind on the topic of giving thanks is being thankful that I lived through the last year. Last year Thanksgiving was very different from this year. Just weeks before Thanksgiving last year we received Eli's Potter's Syndrome diagnosis. Though my mind rattled off one thing after another that I had to be thankful for my heart always quickly chimed in the one I would not be giving thanks for, the baby in my womb. Instead of giving thanks for a healthy baby and adding another member to our family I would be again preparing to give birth to, say goodbye to and bury another child. I cooked and baked but all of my dishes were missing the most important ingredient, love. My heart just wasn't in it. But I was determined to have "the show go on" for the sake of our three beautiful girls. I figured the disappointment of hearing that the baby brother or sister they had been so excitedly expecting would die was enough and that we needed to maintain some normalcy in the midst of our grief.

This year first and foremost, I am thankful that last year is behind me and that we all came through mostly intact. I am thankful for sunrises like this morning's.

I am thankful for my husband and our daughters who have distracted, frustrated, supported, loved and encouraged me over the last year as I fought many demons to bring our sweet Eli into this world and then as gracefully as possible send him to the one beyond and find a way to live afterwards. I am thankful to have again be blessed enough to have found a wonderfully supportive community of people who understand such profound loss and who are willing to share their words and love even in the midst of indescribable pain. I am thankful for the very brief but timeless moments in which our entire family gathered to celebrate our precious Eli and I am appreciative of the sacrifices that were made to make that happen.

This year I am also thankful for this

little turkey in my stomach. I am currently about 17 1/2 weeks and just a few weeks ago we saw a wonderfully normal amount of amniotic fluid, a baby that measured a week ahead and what appeared to be tiny kidneys, bladder and stomach. It has taken this long for me to accept that she is whole and that I am not reliving my worst nightmare for a third time. I am so thankful that I have been able to tell my daughters that we expect to bring a baby sister home to them at the end of April and to see all of the wonderful drawings and writings they have done because they are so excited. I am thankful that my husband just this week got to feel her move already since he was so excited and rarely ever got to feel little Eli move. I am thankful that this year I feel like cooking and I know that a little love will go into every bite of our food tomorrow, I missed it so last year.

I am thankful and hopeful and cautious but mostly thankful.

Monday, November 21, 2011

Exercise = Bad For The Environment?

I have been thinking about this one for a while. Especially on laundry days. Which lately, with the advent of colder temperatures and thicker clothes, has been almost every day. I usually exercise six days a week, early in the morning - if I'm lucky (my kids are eeaarrrlyy risers)- before the kids are awake. My husband runs three to four days a week as well. So now that I've set the groundwork we can examine if exercise is bad for the environment.

I can't speak for others, but when I exercise, especially when I run, I sweat and it's not pretty. So, before 6:30am I have dirtied my first pair of clothing for the day. If my husband has run too, ditto for him. Our girls participate in an hour long gymnastics class once a week and they, you guessed it, get sweaty. So, once a week they wear clothes - sweats, shorts and leotards, for one hour, which must then be washed. I have inadvertently made an environmentally conscious effort by changing my exercise time from the girls' nap time to before they wake up in the morning so now I only have to shower once a day rather than twice. But still, when I think about all of the extra sweaty laundry that would not exist if we did not exercise and the occasional extra showers and baths that are taken to "freshen up", I wonder about my impact on the environment?

It's probably not as bad as I imagine, we do now at least have a high efficiency washer and dryer. Limiting myself to one shower a day conserves water as well. Not smelling fresh is not an option so any amount of showers or cleaning products which are necessary to ensure this are justified for my own and others' olfactory satisfaction.

I think I'm just fed up with laundry :)

Friday, November 18, 2011

Cinematically Musing

Spellcheck says my title is not correct, but go with me on this one, it fits. Last night as I drifted off to sleep I found myself thinking about Harry Potter and the Deathly Hallows. Specifically, the story of the deathly hallows. For those unfamiliar, three brothers trick death into giving them what they desire. The first requests the most powerful wand but his recklessness with it results in his death by the wand's hand and then the wand being claimed by his killer. The second requests a stone that can raise the dead and resurrects his lost love but she is not the woman in his heart and his grief drives him to death. The third wisely requested a cloak of invisibility so that he could escape death undetected. He was able to live a long life and depart this earth with death as an equal at the end.

You may wonder where I'm going with this, you may even think you have me figured out. The resurrection stone, right? No, I've seen Stephen King's Pet Cemetery and any notion of raising the dead vanished after that movie. What interests me is the third brother and his departure from life with death as an equal. My sons never had a choice. There was no medical procedure or alternative to death. At the same time, they didn't understand death. I, of course, did. But I did not choose to give them to death or anyone else for that matter. I held each of them long after death stole their lives. So I've decided that someday I wish to depart this earth as the third brother and willingly accompany death as an equal from this life. There is much to be done until then. Forgiveness must be given freely, kind words spoken often, judgement withheld, truth spoken with kindness and love acknowledged constantly. I must make peace with my decisions and live them to the best of my ability. I believe that these things will allow me to walk away when death comes.

Wednesday, November 16, 2011

No Wonder

Over the last eight years I find myself wondering what Wyatt would be like and what I have been missing raising three girls and not my precious son (and now sons). Today I am not wondering.

While vacuuming the enormously ugly and ugly enormous rug we have in our entry way, which is there for a reason which will soon become obvious, I heard the distinct crickling sound of gravel entering my vacuum cleaner. Gravel which literally falls out of our oldest daughter's shoes every day after school. Gravel, which combined with dirt, makes perfect mocha imprints of her little toes on her once white socks. Gravel which even finds its way into my washing machine courtesy of her jean pockets. I'm pretty sure Wyatt and her are two peas in a pod but I nonetheless would have loved to see it for myself.

Tuesday, November 15, 2011

Looking for the Invisible

A dear friend of ours came over Saturday night. He lost his wife unexpectedly in August. She was very young and there was no apparent reason for her sudden death. I looked at him and thought for a while. If I saw this young man at the gym, library or grocery store I would probably just see a tall thin handsome man and think nothing of it. I would not see the depths of his grief which continues day after day, I would not know that he was widowed before the age of thirty and would never see what the combined genetics of himself and his wife would look like. I would not realize that even though he wears a wedding band, he no longer has a wife. I see it in his eyes but I know it's there, I know that depth of grief myself.

I've always wondered but now I'm pretty sure that my grief is invisible too. People in my life who don't know about our sons probably don't know about my grief because it is unseen. Shakespeare describes this for me,

“My grief lies all within, And these external manners of lament Are merely shadows to the unseen grief That swells with silence in the tortured soul.” (William Shakespeare)

Merely shadows to the unseen grief. Well put, old man.

Friday, November 11, 2011

Saturday Was Just the Beginning

The beginning of a slow trickle which began coursing into a great deluge of tears yesterday. It has been a couple of long busy weeks filled with appointments, PTO meetings and volunteering, church activities and gymnastics. I am tired both physically and emotionally and was yesterday which was the first of my two days home with all three children while they "enjoy" a school vacation. My anger and frustration hit a boiling point yesterday, whether from the children's wild and unruly behavior or from all of the emotions I have basically swallowed over the last eight months trying to make their way back to the surface, who knows. They violently erupted in the form of tiny droplets which just coursed from my eyes for some time.

I have been aware of a while now that I never got to fully grieve Eli's death. It wasn't much of an option. I am his mother but I am also mother to three young children, two of whom were in my full time care at the time of his death. Because he was born just a few months before summer vacation I soon became full time caretaker to three young children in addition to a "blink and you missed it" break in maintaining the household in the form of doing everyone's laundry, cleaning the house, cooking all the meals and doing the dishes plus the gardening and occasional lawn mowing. It was absolutely necessary for me to focus my energy on them at the time and so I did shortly after losing Eli, too shortly. I adapted and made it work. And until now it has worked quite well. This blog allows me a frequent opportunity to share and grieve and has been a valuable coping mechanism.

Until grief slammed into me with the force of a tidal wave. I miss my little boy and all of the things he would be doing right now. I miss seeing his sisters playing with him and helping me tend to his needs. I cringe at their questions about whether "the next baby" will die or their proclamations that it should be a girl so it doesn't die.

Yet today, I feel better. Oddly enough since I was expecting that feeling on Wednesday morning after I made a long overdue Catholic confession (confession isn't what it used to be). I feel better but wary. Wary of that next wave and when it may hit but hopeful that by then I will be stronger and weather it more gracefully.

Wednesday, November 9, 2011

Fiction's Perspective on Baby Loss

I recently read the book "Snow Flower and the Secret Fan" by Lisa See. It is the story of two lifelong female friends in nineteenth century China. Their lives begin on the same note but the paths diverge and converge throughout the novel. The story is told by one of the friends and it is her best friend who experiences multiple pregnancy/baby loss. There is an interesting perspective to be absorbed when the loss is seen and told from a person who has not personally experienced the loss but cares for the person who has lost. There are also some heartbreaking words from the mother who lost her children. It was sad but not unreadable for me and I really enjoyed the book as a whole.

Tuesday, November 8, 2011


Our church remembers those who have died and their families in a mass each year. That mass was held this past Saturday. I attended along with all three girls and my in-laws (who, incidentally are not Catholic and neither is my husband but he chose to stay home). The names of all those gone were read out loud one by one and families went up to the front where four rows of candles stood and one by one those candles were lit. Names were read by date of death so I had an idea when Eli's name would be read. Even though I knew when his name was coming I was completely unprepared for the flood of tears which gathered in my eyes so quickly after hearing that name. I am lucky that I was able to see straight enough to light that candle and return to my seat. After all the names had been read, a song of remembrance was sung and it was then that the tears burst forth. Of course we were sitting in the front row and being unprepared for such an emotional reaction I did not have a tissue handy so I had to dig one of out my purse. I don't know what to think. Should I have anticipated those tears? Why didn't I? I have known about the mass and what would take place for at least a month and half yet it never once occurred to me...completely unexpected.

Thursday, November 3, 2011

I Have To Admit

Memories of Eli's Potter's diagnosis are so heavy on my mind right now one year later. I carried Wyatt to term with no second thoughts and no regrets. I just never imagined I would be asked to make that decision again. When I was, my first thought was to end the pregnancy. I knew the pain, emotional and physical, involved in carrying a child with a fatal diagnosis to term. The difference was, with Wyatt, I had hope. I hoped that the doctors were wrong, I hoped things weren't quite as dire as I had been led to believe, I hoped for a miracle. I trusted in medical science. I believed in miraculous healing.

With Eli I knew better. I knew that the process would involve daily, minute by minute concern about baby's movements and whether baby was still alive. I also knew that it could potentially mean carrying the baby to full term for almost five more months. Our three young children at home greatly factored into my ability to function as a pregnant grieving mother. But most of all, I knew that my child would be born by c-section, hopefully breathing, and that the baby would be beautifully normal looking on the outside but missing just enough on the inside. I knew how heart wrenching it was to watch my child die and could only imagine what sharing that death with my living children would be like.

So I wanted an easier way out with Eli. For just a second. In my shock, disappointment and sadness I imagined just for a moment that it was not happening to me again and I think that option gave me what I needed to find. Words cannot describe what I found but it was enough that day for me to choose life and for Eli's brief life and the overwhelming joy it brought to our family I am grateful.


". . .you are braver than you believe, stronger than you seem and smarter than you think."

Quoted from Christopher Robin, character created by A.A. Milne.

I have lived this quote, twice.

I have found bravery I did not believe was possible when I entered the operating room for my fifth c-section to meet my second son who would not live beyond the four walls of that room. I found bravery every single time I had to explain to strangers, friends or family that the babies I carried would not live, especially when I spoke those words to my own children while pregnant with Eli. Bravery carried me through each and every phone call with the genetic counselor, the Potter's Syndrome study researcher and the pathology department. Bravery moved my feet into the funeral homes to plan my unborn sons' funerals and to make all of the other arrangements which I did without abandoning hope.

I have found strength, emotionally and physically, by attending my sons' funerals just five days after each c-section mostly unmedicated because there is no medicine which can heal a broken heart. I have lost that strength standing at the graves of my two tiny sons who rest between where myself and my husband will someday. Yet strength found me again and held me up when my will all but crumbled. In the days that have followed strength has grown. Strength has transformed my inner physique as much as my own determination has transformed my outer physique. Strength has followed bravery.

I have found wisdom beyond my years. Within my own mind I've discovered the ability to process unspeakable sorrow and then the ability to own that grief. Wisdom which is more than anything I have ever read or heard. Waiting for my sons to die, then giving birth to them and holding them to their dying breaths within hours has made me think about things I otherwise never would have. My wisdom cannot be described in Scripture, captured with a platitude or swiftly encapsulated by medical science. I have more questions than answers. But those answers would not satisfy me, answers cannot fill my arms or nuzzle my cheeks. I now seek only what I need to know for my family's health and I've let the rest go. I have bravely walked and continue to walk a difficult path which requires inhumane strength at times and on that path I have found my own answers. Wisdom came behind bravery and strength.

My life is a combination of bravery, strength and wisdom and I am thankful.


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