Monday, October 31, 2011
Saturday, October 29, 2011
My husband and I are approaching our tenth wedding anniversary and in those ten years he has kept precisely two letters from me. The first was while we were in school applying for jobs, the same jobs in some cases. The rejection letters were unrelenting at times and after a while they took a toll on what was already a very stressful time in my life. It was then that the first letter disappeared. I don't believe I even actually saw that letter. At some later date he informed me of its contents and that was that. I was a little miffed but after his explanation forgiveness was imminent.
The second letter arrived just months ago. That letter had to have been a lot heavier. It wasn't surrounded in sea of rejection. This letter stood alone. It was the letter from the geneticist who worked with Eli and our family. Since he gave that letter to me I have read it exactly one time. I gleaned from it what I knew, that our Eli was perfect in his absence of both kidneys and his bladder, and that after reviewing Eli's medical records and the family history that we provided, which included our first son's Potter's Syndrome,...we were given an eight percent chance of recurrence. Numbers tell us so much, age, weight, height, identification, intelligence and for me a bonafide risk of having another baby with a fatal genetic condition. Eight percent. I've put alot of thought into the number eight since receiving that letter. Eating eight M&Ms versus eight donuts are two completely different things. Eight out of one hundred, which is what eight percent represents, is a relatively small number. The odds of one being in the ninety-two unaffected population are stellar. But tell that to one of the eight affected. Better yet, tell that to me, who was initially given a three to five percent chance of recurrence. Me, who has two of five children affected thus far. Let's put it this way, I don't buy lottery tickets.
When life sends me bad news I am grateful for a husband that tucks it away for another day.
Wednesday, October 26, 2011
I want to be able to get pregnant, tested and be reassured that my baby is healthy like most other pregnant women. I am not unique because I have lost a baby. I am not unique because I have lost two babies. But I am unique in that I have lost two boys to Potter's Syndrome (the same diagnosis of bilateral renal agenesis) yet we still don't know why. We don't know if it's genetic, although the possibility seems likely. We don't know if it's a combination of genetics and environmental factors, just environmental factors or if in our case the recurrence is just a fluke like we were told after losing Wyatt. We do know that our boys had completely normal chromosomes and that their bodies were formed perfectly without kidneys.
This also makes me unique because in carrying a subsequent pregnancy I must get pregnant, hear the baby's heartbeat around ten weeks, feel the baby move sometime within the next month or so and watch my stomach grow for almost five months before I can find out whether that baby is healthy, whether he or she has kidneys. There is no blood test, no early ultrasound, no early detection method and no peace of mind for me - for five long months.
I wish I could just be more normal. That I could get pregnant and somehow be able to know sooner that my baby would be healthy. That the sound of my baby's heartbeat could be reassuring and the baby's movements could be comforting. I once had five months of this normalcy, the months before Wyatt's diagnosis. After that everything changed and each subsequent pregnancy was overshadowed by those memories, those words and those ultrasound images we viewed on a cold and snowy January 2004 afternoon. Yet, even in the stress of those three pregnancies which followed (all resulting in healthy little girls), I was able to brush those words to the side most of the time and focus on one word - fluke, fluke, fluke.
But now, well Eli changed everything - again. I've pretty much thrown the word fluke out of my vocabulary. Now the possibility of it happening again is all too real, it can't just be imagined, or ignored. I lived through it just one year ago. For me it can happen again and five months is a long time to go without knowing.
Monday, October 24, 2011
Knowing what I knew from carrying Wyatt to term altered my experience carrying Eli to term. Both babies had Potter's Syndrome, both bilateral renal agenesis (meaning they did not have either kidney), both turned out to be little boys though despite many ultrasounds their genders were not revealed until birth. But this is a tale of two very different pregnancies. I knew as much a year ago when we received Eli's diagnosis as I know now and despite that knowledge I wasn't able to alter the course that I took.
That is very difficult for me and it is my only regret. Knowing what I knew affected me in such a profound way that it seeped into every aspect of my daily life. I shared news of Wyatt's diagnosis with family, friends and co-workers but told few other people while I was pregnant. My husband and I continued to rent movies, go to church, go out to eat and to the movies, shopping, etc. I lived and I bonded. With Eli things were inevitably different. I had three little girls who demanded a lot of my time, energy and attention in addition to a loving husband who also needed time, energy and attention. I chose to enter the public realm as little as possible, often at times when I wouldn't be around many people and because it was winter I was always able to conceal my smaller than usual belly from prying eyes. I retreated and hid, not emerging until months after Eli passed away. Almost like I was sent away to have a baby in secret and wanted no one to know so that when I returned I could just pick things back up where I left off. Of course, that's not really how things work when your baby dies.
Eli's pregnancy was not what Wyatt's was. Physically they were different, the babies in utero carried and moved differently. I never confused them despite all the similarities. I knew that I was not bonding with Eli and I really really tried. But, again, knowing what I knew, it was just too difficult. Too devastating to become attached to a baby that I knew had no hope. A baby that I knew, if born alive, would take his last breath shortly thereafter. Eli didn't make it easy either. He wasn't a big mover so my family didn't even get to feel his movements until I think I was about seven months pregnant, there were few sweet belly kicks and few times that hands besides mine were laid on my belly to feel him, there just usually wasn't anything to feel and it often took far too long to keep one of the girls interested before they felt a kick. His personality was so much more subdued than any of our other kids, it was like he knew what would happen and did his best to make it easy on all of us for when his time came. Wyatt was the opposite. He was strong and moved strong and never let me forget what a little fighter he was. He was born with fisted hands which looked just like a little boxer. Eli was smaller, softer and quieter and he slipped through our hands much quicker. I don't know what I could have done differently but that question will always be with me. Always.
Friday, October 21, 2011
Wyatt was my first pregnancy so everything was brand new. I had never experienced the kick of a baby within my belly or watched that belly grow plumper each passing day and week. I had also never been so excited to be having an experience, even one that brought me to my knees in the bathroom each morning. It was nothing short of amazing. I had also not purchased anything, not one thing, prior to our first ultrasound at 19 weeks. After Wyatt's Potter's diagnosis I understood that it was because I knew something was amiss. Somewhere in my subconscious I knew.
I knew with Eli too. Early on in his pregnancy my husband purchased a new infant car seat as our original was now outdated and we wanted this new little one to be a safe as possible. He asked my opinion and I just remember not wanting to pick one out. I felt that we should not get one yet. I also remember feeling that Eli's movements early on were different. I didn't feel him move as soon as I had with the girls and his movements did not seem as regular or as strong. To some extent this had happened with our youngest daughter and that was due to the placement of my placenta so I chalked these observations up to the same reason. I will never forget the day before Eli's ultrasound. My husband and I were walking with the girls that night and we were behind them hand in hand. I remember telling him that I was a bit concerned about the ultrasound, that I felt there was something wrong. I knew. I anticipated a problem with the placement of my placenta though. It never even occurred to me that in less than twenty-four hours I would received another Potter's diagnosis.
This got me to thinking. Has anyone else "known" that something was wrong or had a feeling that something would go wrong with their baby while pregnant? Or is it just me?
Monday, October 17, 2011
I found my first online community for parents who have lost children during or after pregnancy eight years and three months ago. That community of people was a lifeline for me just one month after Wyatt died. It was a safe place to share scary feelings that didn't seem acceptable and probably wouldn't have been accepted among those who had not lived through similar tragedies as mine. In that place I found families who had lost babies to Potter's Syndrome as I did, women who had carried their babies to term knowing that the child would not survive. I also encountered families who had suffered miscarriage, some suffering a heartbreaking number of miscarriages. I met families who had suffered stillbirths and losses due to SIDS. Families with babies diagnosed with chromosome disorders or organ defects. Those were just the ones with names, and only a fraction of them. There were so many more without explanation, almost without words to describe the tragic loss. It was in that place that we all worked through whatever stage we were in. I witnessed anger, extreme sadness, jealousy, the immediate whirlwind after loss and the relative calm that comes years after. I also witnessed the births of many many rainbow babies and the shattered trust which happened when those rainbow pregnancies were sometimes lost as well. I will never forget the mother who literally died of heartbreak after her daughter's death and her devastated husband's words to let us know that her suffering had come to an end.
I remember how important October of that year became to me. I wore ribbons of pink and blue and gave them to family members. It was important to me to not only have Wyatt recognized, but to have my husband and my suffering recognized too and to be able to share that suffering with a larger group. October of this year, even though we lost our second son Eli just seven months ago, is different. Things have changed and it didn't just happen this year. October 15th of each year, a day of remembrance for pregnancy and infant loss, is always a special day for me. But I chose to write this on October 17th for a reason. To illustrate where I am in my grief and how things can change. I no longer wear awareness pins during October or ever for that matter, I honestly haven't for years. Instead I wear a men's silver tungsten wedding band which is engraved, on the outside, with the names of all of my children.
I am fiercely proud and fiercely private about my children. For a long time I wondered if my sister-in-law even knew that we had a son named Wyatt.
I understand why Pregnancy and Infant Loss Awareness is lost in a sea of pink Breast Cancer Awareness ribbons this month. Breast cancer is specific. It is about the health of one or both breasts which is being attacked by a specific disease, or strain within, which scientists can isolate, study and attempt to cure and effectively treat. Pregnancy and Infant Loss is everything that breast cancer isn't. It doesn't have hopeful survival rates or survivors to run races or wear pink for the cause. It has mothers, fathers, brothers, sisters, aunts, uncles, cousins and grandparents who had survived without a baby - that pink and blue ribbon was created and is displayed because a baby, or babies, died. The pregnancies and infants lost are due to so many different causes: clotting disorders, hormone imbalances, pregnancy reactions, cord accidents, complications of existing conditions, organ defects, lack of oxygen, slowed intrauterine growth, premature birth, diseases contracted during pregnancy and/or labor, labor accidents, medical malpractice, chromosome disorders, syndromes and the list goes on ... and ... on ... and .... on. There is no one enemy to fight here, no one banner to wave, no one cause to throw money and research at. It is instead a celebration of survival in the saddest of circumstances. A recognition that even though parents are not supposed to outlive their children that too often they do and that those parents are left to live without them. That is where October has changed for me. In the last eight years I have accepted Wyatt's death and made my survival without him a part of me. For me it no longer warrants recognition, I no longer need, but always appreciate nonetheless, the recognition that I'm a survivor, that I have two sons. Two sons who are loved more than the moon loves the stars.
"There is not enough darkness in all the world to put out the light of even one small candle.” Robert Alden.
I am that small candle and even if I am the only one who remembers, they still live on. For me this October, that's enough.
Thursday, October 13, 2011
Okay, something quick and humorous today. Our youngest (she turned 3 in August) is what I refer to as a silent protester. Completely opposite of the oldest who is basically a fire-breather. The youngest has her moments of rebellion it's just that they often go unnoticed because she is so darned quiet about it. If you happen to be in her immediate physical presence you will often notice the pouty face appear which is quickly followed by her eyes pinched shut. She pinches them to expel the tears within much like squeezing a lemon. That child will pinch until every last drop is milked. The tear dropping is immediately followed by an urgent need for a tissue. Which, if granted, dries the tears and magically erases the silent rebellion in its entirety. Amazing. The cost of Kleenex is a small price to pay for a happy kingdom.
I wish it were so easy as a grownup. That I could pinch out a few tears here and there, dry them with a soft tissue and erase that feeling, whatever feeling caused those tears to form.
Wednesday, October 12, 2011
I debated on this title - because it can read "Seriously?" but the sad truth is it is "Seriously" as in no question about it.
My oldest daughter came home from school last week and announced that her friend would not be able to have a play date this past weekend because her mom would be at the hospital having a baby. Simple, right? I should be happy for her, huh? Yes, and . . . not so much. I really try to take the high road and let some of the unintentionally hurtful things flow underneath but this one sucker punched me right in the gut. My daughter's friend happens to have four, now five siblings. The oldest of whom is a third grader. This family has had six beautiful healthy children in about the last eight to nine years! The newest coming less than eighteen months after the last one (two since my daughter started kindergarten and she's only in second grade now). Three boys, three girls. Ugh.
I just wonder if they have the slightest clue of just how lucky they are to have so many blessings in their house. I can't help but think of all those families whose houses are empty time after time or houses like ours which are one or two children emptier than they should be.
Monday, October 10, 2011
Early in my pregnancy with Eli (honestly probably before I even got pregnant) I remember praying, chanting almost, for a healthy baby. It was my one and only request. I have always prayed for a healthy baby but it felt especially important with Eli. He would be my fifth and what I believed to be my last c-section. Also, to be honest, he was to be my last child. I felt it in my heart and my body. Five pregnancies was enough for me. Five pregnancies in nine years of marriage, five c-sections. I was ready to be done. I was so sure of it. And then I became very sure of something else. Before I ever laid eyes on the ultrasound screen, before I saw that awful grayness where there should be beautiful black amniotic fluid surrounding the baby, before my doctor had to deliver those words to me for the second time. I knew something was wrong. I just never imagined how wrong it would be. I believed that Potter's could not happen to us again, that it was what it had been called, a fluke. But it wasn't.
So now I struggle. I prayed so very hard for just a healthy baby with Eli, just healthy. What should I pray for now? To have a baby with kidneys? Do I need to be that specific in my request? Or is it just a waste of time, effort and emotion? Clearly prayers cannot save my children. Been there, done that, didn't work. Prayer didn't save Wyatt and it didn't save Eli and I had people of all denominations and locations praying for those sweet little babies. I've learned to adjust prayers. When Eli's Potter's was diagnosed I just began praying for him to grow and be born alive. He did, but was that because I prayed? I don't know. I'm really lost here. Prayer has never felt more useless to me. Probably because the things I usually pray for are spiritual and emotional in nature and cannot be measured or quantified so I never know if they are answered. This was a huge letdown. I still go to church. I still believe. I still pray. But it still bothers me.
To pray or not to pray?
Thursday, October 6, 2011
Suffering. Sadness. Bitterness. Anger. Isolation. Mood swings. Tears. Defiance. Jealousy. Denial. Regret.
What are things associated with grief and loss?
Right answer, but now what?
What do you do with these things? And what if you are not the person experiencing them but rather the person watching the person you love experience them? Then what?
I don't have the answers so I invite discussion on this blog or your own. I can only share what I know from what I've experienced and witnessed through my losses. I have witnessed grief that has been constructive and inspirational. Parents who have turned their own pain and heartbreak into efforts to create or assist charities or ministries for others suffering similarly or even just causes close to their hearts. I have witnessed grief that has been destructive and at best, ugly. The kind that can transform a person into the gnarled witch who gives Snow White her poisoned apple. I have witnessed grief that falls in between and sometimes see-saws between extremes. I don't believe there is a right way or wrong way to grieve, it is a continuum unique to each individual.
But I have found that there is a limit. More so for those around us than for us, the bereaved. And....it was shocking when I first admitted this to myself...but I believe that limit is necessary. Unless we are able to grieve in a vacuum, we are surrounded by those we love and who love us and it is very painful to watch those we love suffer. But that doesn't mean we have to flip a switch and one day stop grieving. Impossible. However, we all have our limits and while I think living through the death of my children has certainly pushed me above and beyond any limit I could have ever imagined in my life, I can only imagine what it would feel like for my husband to lose his wife to it too, or my children their mother or my parents their daughter or even my siblings their sister. I am not the me I used to be but I'm here and I'm alive and there is nothing that I can do to change what has happened to me. What I can change is how I grieve - constructively, destructively or somewhere in between?
I know grief and I know that it has no time limit and no end so I have searched for custom and practice as a guideline, what is traditionally referred to as mourning. Wikipedia included this in its description of mourning: "Those most affected by the loss of a loved one often observe a period of grieving, marked by withdrawal from social events and quiet, respectful behavior." My research into mourning revealed that widows mourning the loss of a husband appear to be given the greatest latitudes throughout history. It was once customary for widows to wear special mourning clothes, often black or dark colored and it was expected that they would be donned for one to two years and it was even acceptable for a widow to dress that way for the rest of her life. The mourning period for siblings was six months and parents were allowed to remain in mourning for their children "as long as they feel so disposed". By the twentieth century the fairly strict rules of mourning were relaxed and black became a fashion statement rather than an expression of grief.
I am in no way advocating smothering, suppressing or suddenly ceasing to grieve. I am talking about active grieving. Asking for help and telling others how they can help. Listening to what others have to say in relation to ourselves even though those things may be unpleasant and even hurtful. Being open to suggestions intended to help. Being willing to act. Whether that action is speaking with a trusted friend or family about our true feelings, pushing ourselves to do something a little bit out of our comfort zone in order to facilitate healing, exercising to stimulate endorphin release and a positive mental attitude about our bodies and ourselves, speaking to a professional counselor or joining a grief group, and even exploring medical treatment if necessary. Grieving does not take place in a vacuum. No other person on earth feels our losses like we do, but those around us have also experienced loss - they have lost a grandchild, niece, nephew, sister, brother, child and if our grief is destructive they may also lose us, the bereaved, too.
Tuesday, October 4, 2011
How many conversations can you remember from ten years ago, nonetheless conversations with a co-worker? I will likely never forget that one, it made an impact on me years before I would create a photo album with pictures of my own deceased children. However, that would be one I would delete. My lack of sensitivity and empathy is embarrassing. I am so thankful my words never graced that family's ears. I am grateful that my sadness and sorrow has given me a perspective which I believe I may never have otherwise gained and a sensitivity which not so many of us have. Yet as I sit here it occurs to me that even though I have lost two babies on the day of their births I STILL don't understand that family's exact grief because my sons cried, they breathed and they opened their eyes - if only for a moment. Their daughter never did. Her birth was silent and the tears shed that day were their own. Yes, I would definitely "undo" those words in a heartbeat.
Monday, October 3, 2011
A sign for me today that life can grow even in the harshest of conditions and long after hope has been abandoned. We planted Wyatt's garden mere months after his death in 2003. I had no clue about what plants would thrive, where and why so instead we focused on the baby aspect of that garden. We planted baby's breath, a bleeding heart, snapdragons (because they're seriously too fun for kids - and adults too with their little open/close dragon mouths) and two roses - one a tropical sunrise and one called cherry parfait which is like swirly cherries and cream. The peach rose and snapdragons succumbed to their first winter but the original baby's breath, bleeding heart and cherry parfait rose are still in the garden eight years later.
Today while in Wyatt's garden I saw something growing very close to his gray branches. What I thought it couldn't be it was. Cherry parfait reminding me that hope is never truly lost, sometimes it is just hidden from sight.