Saturday, December 31, 2011
I don't know what the new year has in store for our family and that is what will make it worthwhile. Living each day without knowing, being able to make it into something memorable and if it's not, letting it exist in the past and moving on to tomorrow. I no longer make resolutions that involve my exterior. There is nothing I can promise to do or change that will be more effective than examination of my own heart. When my heart is okay everything else falls into place. That's the funny thing I think, we all know the right things to do but too often we do the wrong things for the worst of reasons. There is no diet alone that can truly fix a weight problem, no desk ornament that can fix dissatisfaction with an occupation, no expensive token that can fix a crumbling relationship. So my everyday resolution is to open my heart to my mistakes and allow myself to learn from them and to open my heart to the possibilities that occur in life and not just the ones I try to create.
Of course the new year will bring new things for our family, this time in the form of a baby girl. My fourth daughter and anticipated last child after burying two sons. This carries with it a lot of heavy emotions, which as we enter the new year I will share.
Until then I wish everyone can step into the new year and feel the empowerment of newness and the promise of change.
Wednesday, December 28, 2011
So we have spent our Christmas vacation so far with one kid after another just exploding in one way or another completely out of the blue. She will be fine for days and then have a few horrible hours and then be fine again for days...ridiculously frustrating and flat out no fun. Three years in a row. Thankfully the only one of us sick on Christmas was myself so I did get to see three smiling faces this year but that was a very very brief respite.
Ever optimistic, I am now holding out hope that we will be all be well entering into the new year. When we can finally enter the year 2011 into our family annals. It will be a year that in the future will be marred by one very sad statistic, Eli's birth and death. But a year for me that carries so many more memories that this latest round of sickness and stress has brought to mind - our oldest's fever spasming body sprawled on our couch less than two weeks after losing Eli only to find out that she had another fairly uncommon urinary tract infection which raised memories years passed of unpleasant testing which we had to repeat to make sure that her VUR (urinary reflux condition) had not resurfaced. Of course, when we finally cleared that hurdle months later I began the very emotionally painful and exhaustive process of entering our family and Eli into the Potter's Syndrome genetic study. Months later I was able to finally pack away that paperwork and we embarked on the absolutely terrifying journey of pregnancy after two Potter's babies.
I don't know what 2012 has in store for our family but I do know that whatever it is we most likely can weather it, I am just hoping for calm seas and happy sailing this year to help put the memories of storm tossed waters behind us.
Friday, December 23, 2011
Last year it was the adenovirus which took out our oldest for an entire week of school (highly contagious virus) and then our middle daughter had pneumonia at the same time and our youngest one had a milder version of some sickness as well (oh, and I was sick too and then my husband got sick on Christmas Eve). The year before our oldest was out from school with pink eye which she so graciously shared with almost the whole family (thank goodness we broke her of the eye rubbing habit!).
Ho Ho Ho-pefully we can kick this apparently fairly short-lived bug out to the curb before tomorrow so we can enjoy an illness free holidays. The emotional strain of sick kids only magnifies the emotional strain of missing kids at this time of year. At least we are ho ho ho-me for the holidays!
Monday, December 19, 2011
Thursday, December 15, 2011
I don't remember if I was pregnant or I had just given birth to Wyatt but I know that's why I have this memory. I was glimpsing an apparently perfect Americana scene, one to which I did not belong and never would.
Tuesday, December 13, 2011
For those of you familiar with Richard Paul Evans' The Christmas Box, you are probably familiar with the Angel of Hope Statute and you may be aware of the annual candlelight ceremony held on December 6th at 7 pm at or near these Christmas Box angel statues for those who have lost children. I attended our local ceremony one week ago tonight and during the ceremony it occurred to me that no one will miss our little boys like I do. Others have lost babies, but none quite like my boys. No one but me carried them, felt them move within, and then held them to their dying breaths. Just like I don't know the depths of grief anyone else feels for Wyatt and Eli, no one will ever feel the depths of grief within me. I have mixed feelings about this. It is sad that no one will ever truly understand but it is also special. I have a relationship with my sons that is ours alone, as unique as their fingerprints.
Sunday, December 11, 2011
Every year since Wyatt's birth we have participated in a giving program such as the Salvation Army's Angel Tree and chosen an anonymous boy about Wyatt's age to purchase and donate a gift for. This year we will do the same for Eli too. We would have spent much more money and time on Christmas for Wyatt and Eli if they were here so it feels good to honor that and them by donating something for another child their age. It also serves as an annual reminder of how much they would have grown and what we have missed. It is a gift of heart and a time of reflection.
We also purchase the boys small gifts to leave at the grave for Christmas and place a small decorated Christmas tree at the gravesite. When we began doing this we would carefully wrap a string of battery powered Christmas lights in plastic and take them out to the cemetery Christmas Eve. Last year however, dawned a new age of Christmas lights for us with an LED battery powered set. We found the set still fully lit days after Christmas so this year our boys will have a lighted tree for much longer!
These holiday ideas are inspired by our sons, Wyatt and Eli, imperfectly formed and lost due to Potter's Syndrome but perfectly loved and remembered by our family which includes three beautiful rainbow girls born in between. My blog is the story I began writing while carrying Eli to term which details my Potter's Syndrome journey beginning with Wyatt and our life beyond.
Tuesday, December 6, 2011
Christmas has long been a special time for me. My husband and I married just days before Christmas almost ten years ago. We spent our first Christmas together and my first Christmas apart from my own family as newlyweds collecting seashells on a southern Florida beach which was followed by a trip to one of the most magical places on earth, Disneyworld.
We celebrated our first pregnancy the next Christmas and transported our first, and only Christmas tree, a seven foot tall artificial across town in my Geo Prism with its doors bungee corded shut. That year I was humorously deluded into believing I could not only have a Martha Stewartish tree, but that I even wanted one.
Our second Christmas was celebrated in our new house but was overwhelmingly tinged with sadness. I was about three months pregnant with our first rainbow but only six months out from Wyatt's birth and death. As if that wasn't enough, in the midst of our grief, we sought comfort in the form of a puppy. The most adorable black and brown miniature daschund who apparently was very familiar with the novel Strange Case of Dr. Jeckyll and Mr. Hyde. We intended to purchase Dr. Jeckyll but unknowingly took home Mr. Hyde. It was not a good fit and after about five months we came to the difficult conclusion that our puppy would be much happier with a different family. That decision was reached just before Christmas and by Christmas she was gone. As if that wasn't enough, my sister was coming for Christmas with her one month old baby boy. That was almost too much for me. Her pregnancy was unplanned and she was extremely immature and unprepared to have a baby. I was jealous and heartbroken at the same time. Many weeks of sad anticipation of that visit passed. I didn't know at that time what I was capable of. When at last Christmas came, I not only went to see him, but I held him and snuggled him and like the Grinch, my heart grew two sizes that day.
Fast forward to last Christmas. I spent many hours sitting alone in our living room gazing upon the most beautiful Christmas tree I know, my own. Over the years, just like me, that tree has changed. It began with ribbons and glass bulbs which when children finally entered our home changed into plastic and cloth. It is a red, green and white confection of gingerbread men and women, Santas, snowmen and angels topped with a golden star. The frosting are my twinkling white lights (which thanks to an hour long shopping mission across town are now LED). The twinkling white lights are my constant and truly one of my favorite things. So last year I sat, unable to sleep, consumed with grief for the child I carried within who would not be here to see those twinkling lights for the first time this year. Even those beautiful twinkling lights did not brighten my dark days and nights.
Which brings me to this Christmas. Those twinkling lights are here again, steadier than the stars, which often disappear behind wispy clouds. They are more beautiful to me this year but I still long to see them reflected in the eyes of one who hasn't seen them before.
Sunday, November 27, 2011
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
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.
This year I am also thankful for this
I am thankful and hopeful and cautious but mostly thankful.
Monday, November 21, 2011
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
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
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
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
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
Tuesday, November 8, 2011
Thursday, November 3, 2011
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.
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.
Friday, September 30, 2011
Eight years after Wyatt's death I am not "over it" and there has been no closure. He died, then Eli died and they left me to survive without them. My grief is not a journey. There is no far off port of resolution and peace. There will never be a day when I do not grieve their losses somewhere in my heart.
So many grieving parents struggle with this. Family and friends perceive and often expect that someday the bereaved will just "snap out of it" but that doesn't happen. How I grieve eight years after Wyatt's death is different from how I grieve nearly seven months after Eli's death. The tears are now controlled and often only shed in complete privacy. The wounds which were so raw and painful in the immediate aftermath of their deaths are now more protected. It takes more to make them ache so painfully. I will never be "that person", the one that I was before and I've accepted that. I actually prefer "this person", the bereaved one. Yet, if you asked me to describe myself I would hesitate to use that word. The grief I carry for my sons is only part of who I am, it does not define me.
Grief is not a journey, it is not a ten step process, it is not a way of life. Grief is perhaps more like an uninvited companion. Grief makes itself known by the sight of an empty crib, the unnatural silence of a household, the empty space in a family photo. Grief will be at my side until the day that I join my sons but even then grief's journey will not end. Grief will then walk alongside those who have loved me and are left to survive.
Tuesday, September 27, 2011
Today while waiting with my three year old to check out our books at the library an elderly woman blatantly cut in the front of the line to check out her own books. This has happened to me before but today it irked me a bit. I mean, seriously, how impatient do you have to be to cut in front of a three year old at the library? Especially when that little three year old is hip hopping all over the place with her own impatience?
I attempted to let the woman politely know that there was a line behind her while at the same time intending to let her cut in front of me anyway but she either was hard of hearing or ignored me so I abandoned my effort. But I thought to myself, "Lady, I can tell you a thing or two about waiting." Try waiting over four months for a child in your womb to either take his last breath or enter the world. Try waiting over four months to find out whether that child will cry when he is born. Try waiting over four months to hear that cry and then begin to count the minutes, yes minutes, which will make up your child's entire life. Try waiting those precious minutes praying each and every heartbeat is not his last. Then, when you've done all those things. Do it again. I've done it, twice, and I now know a few things about waiting.
I know that it's not the end of the world to step into a line that has more than one person ahead of me. I know that it's not worth the mental effort of analyzing which line will be faster in an effort to save precious minutes. I know that whatever precious minutes I manage to save, they will not even hold a candle to some of the most precious moments life has to offer. I know the lightness my heart gains when I let someone with a smaller load or cart go in front of myself or when I slow my car to let someone cross the street. I know what feeling that burden of waiting being lifted feels like too.
I don't want anyone to understand waiting like I do. But I would like to see more patience than impatience and more empathy than judgment. After all, some of the best things in life are worth waiting for, I also know that about waiting.
Monday, September 26, 2011
Friday, September 23, 2011
In my tale of two children, my tale of two griefs, something happened to me a few weeks ago which I had not yet experienced and I was so completely unprepared to face. In fact, I not only was so unprepared, I did not even recognize what was happening in the situation right away.
Last year while pregnant with Eli I taught kindergarten classes at church. It was my second year teaching and I had made the commitment before finding out about Eli's Potter's diagnosis. After the diagnosis I was determined to live life as much as normal for myself and our children so I continued to teach. This was made especially challenging by a very difficult class in terms of getting and holding their attention each week. I soldiered on until signs of labor appeared a few weeks before my c-section date. Then I freaked out and notified the head of our program that I would not be able to teach effective that day forward. I had already sent a letter to the parents of my kindergartners indicating that I would not be finishing up the year as their teacher and explained briefly about Wyatt and Eli and that I would need some time after Eli's birth. I never got to explain it to my class or to say goodbye and wish them a good year. It was all so abrupt and panicky on my part.
After Eli's birth I took an absence from church for many many weeks. I needed to not see those faces, the ones who knew about my loss and the ones who may not have known about my loss and could have asked about my baby. When I felt comfortable I began going again and aside from a few babies here and there (thankfully we go to early Mass which is not attended by many children) things went pretty well. Which would explain why I gave attending the faith class yearly kickoff celebration not a thought in the world. But as we were walking around I began getting a feeling. Almost out of place. Some people smiled and acknowledged me while so many more it seemed just looked away. Yet it took me the better part of an hour to even put this together, to place what I was feeling. It was new and it was hauntingly awful. A memory I won't soon forget.
I have always assumed that some past experiences have been negatively influenced by my anticipation of the situation and all that could wrong. But on that day I had anticipated only fun with my girls. I was so unprepared.
Wednesday, September 21, 2011
I am writing this post especially for Franchesca's Small Miracles blog hop at Small Bird Studios. I recently posted about chasing hope but that post didn't seem to fit with the theme of choosing hope. So, back to the drawing board I go and I will start with the basics this time.
The noun "Hope" is defined in Webster's as "desire accompanied by expectation of or belief in fulfillment". For eight years my definition of hope has been something a little different. Anyone who has read any of my many postings on this topic probably has an inkling how I define hope though I've never spelled it out. Hope for me is found in new life, specifically life that I have created. When Wyatt died my hopes died too. This may sound conceited, but stick with me. Until the moment he died I had achieved everything I had intended to in life. I had a husband perfectly suited to myself and in him I found my best friend. I had worked hard to earn the money I needed to attend college and graduate school with the most minimal of loans. I owned my car and had just begun a career which I chose as a teenager and had persisted to achieve with little support from my family. I had intended to start a family and though I was no stranger to failure I usually found a way to make things work but with Wyatt there was no wiggle room. Probably for the first time ever I accepted the bitter taste of defeat for what it was, loss in the purest sense. I was told there was no reason to believe it would happen again and that we could try for another child but hearing and feeling are two different things. It is so very hard to rid yourself of that bitter taste. I could have named our first daughter hope, because that's precisely what she was. She became my definition of hope. My chance to find good again in what had become a horribly sad world.
She is now seven years old and I realize my definition must change. I have found hope and she has changed me. Hope has reignited my desire for life, for my life, and my need for fulfillment. These things cannot be defined by others - not my husband, not my children. Desire and fulfillment are things that I must strive for myself. I desire to live a good life (one spent balancing service to others and self while being mindful that a candle loses nothing by lighting another candle). My expectation is that a good life will lead to fulfillment. Today, I have changed hope.
Tuesday, September 20, 2011
Monday, September 19, 2011
Yesterday it occurred to me for perhaps the first time that something doesn't necessarily have to be fair or unfair. Sometimes things are just not fair or not unfair. Let me explain. I would hope that I'd be hard pressed to find someone who would characterize my loss of two sons at birth as fair. Probably quite the contrary. But are those losses really unfair? Especially in light of my last post about others' children. Perhaps. But I think that maybe my losses are best categorized as not unfair. I would definitely not consider them fair. But, what makes them so unfair? Because my neighbor or my sister didn't suffer the loss of two babies? If they had, would that make it fair - tit for a tat kind of thing? Hardly, it would just double the sorrow in the world and mean that another family had to bear the heavy burden of losing two children. Is it unfair that they haven't lost two children like I have? No. Who am I to make such judgments?
I have been raised in terms of fairness. One of three children, the oldest at that, I learned the word "fair" at an early age. This concept of fairness was fostered and soon enough life was gauged in terms of fairness. Sure the phrase "life isn't fair" was tossed around here and there. But lessons to really drive that point home were so very missing. I find myself dealing with fairness issues and arguments on a daily basis dealing with three young girls. Three children of the same gender tends to make things more complicated than it was for me growing up with a sister and a brother. It seems that our parents were quite concerned with fairness when my husband and I were children and have yet to let those pesky concerns go. Not me, as a parent I seize opportunities of unfairness. I think it is an important lesson to learn and the earlier the better. Because that's just it, life isn't fair. People are not treated fair and despite any and all efforts to the contrary, true fairness and equality is a mythical concept. Plain and simple.So I'll just stick with not unfair. Instead of asking "why me" maybe the better question is "why not me"? I would be a fool to hold myself out as so divine that such things should not happen to me. I'm far from perfect. Imperfection has taught me that things don't have to be constantly measured in terms of fairness but that doesn't mean they can't be not fair or not unfair.
Thursday, September 15, 2011
The topic of rainbow babies has been in my head and heart lately. Prior to Eli, I had three, he was to be my fourth. I didn't realize for a long time that Eli too was a rainbow baby, brought to life in the wake of a terrible storm many years prior. Eli's rainbow was not meant to be, it was the kind that appears faintly in the sky and then you blink and it's gone. I realize that I have much to be thankful for in my life, our three girls, and so much more than many have or may ever have. This in no way diminished the pain I have felt or will continue to feel the rest of my life for the loss of our boys.
My rainbows don't blind me to the pain of watching others have their babies. Yes, even though I have three healthy daughters I still feel pain when others have babies of their own. Especially baby boys. Something which my family, myself excluded, seems to excel at. I don't believe that I have ever shared this particular heartbreak. I was twenty-five years old when I got pregnant with Wyatt, my younger sister was just nineteen and unmarried. I was equally surprised and devastated to hear, sometime after Wyatt's Potter's diagnosis, she was pregnant. It was unplanned and she was more than unprepared. She appeared to be lacking in every aspect - financially, emotionally, in maturity and stability. She appeared at my bedside the June morning that Wyatt was born five months pregnant with a healthy boy. The day that baby was born was one of the worst days I could imagine. I was not there. I did not call. I did not even see him until he was a month old when they came to visit for Christmas. My family was less than understanding of my feelings. They in no uncertain terms told me to get over it and see my sister. He was the first and only baby I held after Wyatt was born and before our daughter was born. I could not understand how she was given this wonderful little boy to care for and I was given a grave to tend instead. Less than a year after he was born she was pregnant again. This time was worse, she never revealed her pregnancy but it was nonetheless discovered when she was seven months along. We believe he was carried with no prenatal care prior to that. Yes, I said he. She had another little boy. Still unmarried, unstable and even more unprepared. I harbored a lot of anger for a long time. Witnessing the hand that they had been dealt which is a bum one in the very least is difficult. Loving them is much easier thankfully. They didn't ask to be born and they couldn't choose their parents. I however can choose my emotions and I have to choose what is best for them.
Since then I am aware of at least two extended family members getting pregnant as unmarried, unstable teenagers and giving birth to perfectly healthy little boys. I will never understand why them and why not me. So I've stopped asking the question. I've for the most part stopped comparing. The inequities never make sense and they certainly don't ease the aching in my heart. I don't know why some people have so much more suffering it seems than others. I'm not convinced it isn't random. Rainbows fade, they are not permanent and are not meant to be. In a Biblical sense they are the sign of a promise. So today I reflect on my own faded rainbow and promise.
Wednesday, September 14, 2011
Sunday, September 11, 2011
Today marks an important milestone for our nation as we honor the tenth anniversary of a very difficult day. Today marks an important milestone for me as I honor my son's absence for six months to the day. I reflected on the heaviness of today while driving home from church. I envisioned the twisted and scorched rubble that remained just hours after two magnificent towers stood in the morning sunshine. I was in those towers just six months before they fell and I felt just as much awe standing at their feet looking up as I did standing on their top looking down. The loss of their beauty pales in comparison to the loss of life, hope and security all Americans felt that day. Fear crept in and has lingered ever since. The rubble of that devastation was long cleared away but the memories remain.
I too fell, six months ago I crumbled for the second time. I hadn't even finished rebuilding from our first devastation before the second and most unthinkable struck again. For the past ten years there has been talk and action about how and what to do to remember what happened on that fateful day. How to memorialize those who fell and the spectacular that rose to service of man and country. I don't believe that answer lies in a building, memorial or any tangible piece of anything. It is contained in the hearts of all those who remember and who share their memories. Wyatt and Eli didn't die the day that their bodies did. They live on in my husband's and my heart and thanks to our memories and words Wyatt, who was born before any of his sisters, lives on in their hearts. Eli's memory lives in all of our hearts and so long as we don't let go they always will. Twisted and scorched rubble can yield beautiful things in spite of unbearable, indescribable loss. Rebuilding in the shadow of grief is accomplished one person at a time and the memorial we each create is irreplaceable.Ten years later I see a nation that was brought to its knees. A nation that would not stay bent down. A nation that stumbled along the way. A nation that is still trying to find its way. Yet a nation that remembers the immense sacrifices and pain which stitch it together and make it whole.
Friday, September 9, 2011
When someone asks how you're doing. For so so long "okay" or "good" was just a reflexive response. No thought to the question and no thought to the answer. Any response that deviates from this norm gets attention. I actually go out of my way to avoid the standard responses now. If I'm having a good day, I say more than "good" or "great". If I'm having a not so good day, I use brief but clear words to describe it. It may just be saying that I'm struggling or I'm tired or busy or whatever is weighing me down. It feels good be honest and let go of that fraud that I spoke about yesterday. Whoever has asked me the question won't know how I'm actually doing if I don't give them an honest answer which won't allow us to interact very personally. And if whoever asked the question didn't really want to know the answer perhaps they will rethink asking that question in the future which again will affect on a deeper level the interaction that they have with me.So. Here is my challenge to everyone. Answer this question as honestly as you can. I don't believe it's necessary to unload all of your troubles in one answer or to deliver that answer in a dramatic "woe is me" fashion. I think a simple but short description of how you are doing is suffice, even if that answer is just saying "I feel like crap". The reaction you get may be surprising and it may be rewarding. You may find someone to listen and maybe even an offer of help to carry you through. With that said, you may end up feeling worse, BUT I no longer expect myself to have great days all of the time and I don't see those not-so-great days as failures anymore either. They are what they are and I can always believe that tomorrow will be better.
Thursday, September 8, 2011
This is not the first time that this credit card company has cried fraud and this is one time too many. Credit card company, the time has come, I'm breaking up with you. You tend to take more than you give, talk more than you listen and you are way too paranoid.
Fraud has a place in my life. Smiles are faked, glances at babies and bellies are quickly averted. These things I'm willing to deal with, they are coping mechanisms and really more like fibs. The babies and bellies move on and the sharp pains in my heart quickly subside as they do. You, oh mighty credit card company, take much more cajoling and effort to get rid of. It is you who is fraudulent, not me.
Thursday, September 1, 2011
When I married it was my sincere hope that someday my husband would convert just as my grandfather and father did before him when they married Catholic women. That hope was crushed when we were told our first child Wyatt would die and was completely extinguished when he did die. When we got Eli's diagnosis I knew it was over. God certainly didn't score any brownie points there. I don't think we will ever bridge the great divide of faith in this household.
So last night I figure that God must really have a sense of humor. He can make it rain on a sunny day, right? I only hope that he finds our marriage and its sometimes lighthearted approach to faith amusing because we aren't going anywhere.
Tuesday, August 30, 2011
I am a crocheter. One that never begins a project without insuring there is exactly the correct amount of yarn in the right colors with an ounce or two to spare. This step follows a tedious search through pattern books for just the right item. The thought of stepping outside a pattern, even though I have been crocheting seriously for almost ten years and have made countless adult sized afghans, baby sized blankets, baby hats, booties and even mittens along with scarves and washcloths, is terrifying and leaves me completely blank.
I take a similar approach to life. I rarely cook a meal or dessert without a recipe, I never go grocery shopping without a list and if you ask me where I see myself in ten years I have an answer. I like order, direction and plans. I need to see where I'm going and know approximately where I'll end up. Pretty much everything in my life fits this pattern. Everything but Wyatt and Eli, the outcomes I could have never planned. So I have had to improvise, stitch things together with ribbon and weave them into my life. Yet despite these two huge curveballs I still find myself unchanged in this aspect. I still cling to patterns, to recipes and to the belief that I am mostly in control. This facet of me is probably the most unchanged if not the only unchanged thing in me in the last eight years. Even though sometimes I think I would be so much cooler if I could just crumple up my pattern and toss it out the window at eight miles an hour, pattern comforts me and I need comfort.