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

Tuesday, May 31, 2011

Somewhere to Vent

I posted a while back about feeling the weight of the world on my shoulders. It has been there for some time now that I honestly don't notice much anymore. I just want it gone. For a day, an hour, a minute. I just found out today that Eli's genetic, chromosome and autopsy information was not transmitted to the geneticist. It has been almost three months and they don't even have the *#%@ information! I had no idea. I made phone call after phone call after phone call before his birth making arrangements between the hospitals. I asked question upon question and did everything I was told. If I had a nickel for every time I've had to say the word autopsy in the last week I would take a vacation. Every time I have to say that word it reminds me of the second most awful decision I have had to make in my life, to hand my newborn son over for an autopsy. It hurts. The list of failures is so long I am beginning to wonder if it's a sign, a sign for me to stop and just let things be, to try to heal as we did after Wyatt's birth. It is literally as if the universe is speaking to me and it must wonder what a fool I am for not listening. I began preparations for Eli's funeral weeks before his birth, I met with the funeral director and gave them every piece of information necessary for our son's funeral and they let me down, I have yet to even receive the death certificate. I made arrangements with my doctor's office and the geneticist to try to get some answers and now they've let me down. We have contacted the headstone provider we used to buy our headstone and attempted to design one for Eli and so far they've let us down as well. I have and still am trying very hard to participate in a research study for potter's syndrome and they've let me down too. It is so bad that I have spent about a week trying to locate rock for the border to the boys' garden and have so far been unable to even secure something so simple. Three months and so little to show. No headstone, no death certificate, bad memories of a funeral, knowledge of an autopsy that at this point has proved to be fruitless and limitless frustration with the medical and scientific communities.

Wednesday, May 25, 2011

Alone in the Ring

I feel like I'm standing in the middle of a boxing ring, gloves on, hands raised, muscles tensed, eyes focused on the fight ahead. Yet when I look around I am all alone and almost paralyzed with fear. I have no way to block the blows raining down upon me, no coach in my corner to guide me to victory, no training to fall back on. That's pretty much how I feel right now. My opponent is Potters sequence, specifically bilateral renal agenesis. It has taken two of my sons and I want to know why. I have no training to assist me in this fight and those that I have asked for help have let me down more than absorbed the blows. I would just like one person to say "let me help you" and be able to do that. I have made a few more attempts today in the hopes of throwing a few punches of my own, hopefully they land in the right place. It is painfully obvious there are no answers right now and may never be, but I would be too remiss to not make every effort that I can. So I keep fighting alone waiting for someone to step into my corner.

Those Clothes

They sit in my closet, unworn for two and a half months. A draped eggplant top, the one that I wore when it was just myself, my husband and Eli that afternoon - the one that he died, and a blessedly stretchy polka dotted black and white dress which I wore the last time that I held Eli - the day of his funeral. I have not been able to put them on since but think of them often. I have a similar outfit that's Wyatt's. It is a beautiful turquoise dress with bright red poppies on it and is the outfit I wore for Wyatt's funeral. Because our oldest daughter was born just one year later I felt it appropriate to wear to her baptism which we held just five days after she was born. I had my little boy in my heart and the same body I had after birthing him so it just fit in so many ways. I have not worn that dress since. It hangs in the back of my closet. I was just wondering if I'm the only one who has "those clothes". The ones that are just too close to our little ones gone, that threaten to overwhelm us if we slip them over our heads.

Monday, May 23, 2011

Weeding My Garden

Gardening is on my brain. Vegetables, flowers and weeds. Weeds that creep into my soil and try to send their roots deep inside to hold on. Those weeds also find their way into my thoughts. When I lay in bed at night before falling asleep and realize that my little boy should be sleeping in his bassinet at my arm's reach. When I think about how quiet our house will be this fall when our second oldest heads off to school with her sister and I am left with our youngest when we had planned on her being home with her little brother and I instead. When I realized we no longer needed to have the diaper bag in our minivan. These thoughts, if not pulled, root themselves deep and threaten to crowd out the beauty within. The more attention these thoughts get from me, the larger they grow and the harder it is to think about anything else. Every day I have to make a conscious effort to look up and look ahead. I have to choose to live for what is instead of what might have been. Just like spending hours in my yard painstakingly pulling weeds from the ground, rooting into the soil searching for its roots, I have to also perform the excruciating task of weeding my spirit. Every day. That choice is hard. It is so much easier to let the pain take over, to do nothing. I don't make this choice because that is what my sons would want me to do, honestly I believe they want me to be happy. Not just for me to act happy but to really be happy. The choice is only for me. If my sons have taught me anything they have taught me that one never truly knows what the future holds and no amount of planning, prayer or even hope will change that future. Each moment is precious and once it is past, can never recur. It is up to me to make those moments memorable instead of forgettable.

Thursday, May 19, 2011

Chewed Up and Ready to Spit Out

I've let my news digest a bit after it chewed at my insides for awhile. That time has allowed me to find the words I need to spit it out. Without fear, disappointment or shame. This is a scrubbed down version of the truth, a truth that perhaps only One knows.

I grew up knowing my mother had a sister who died at birth. She has the most beautiful heart shaped sandstone headstone which used to be right alongside a big strong tree which somewhere along the years was cut down. We visited her grave each year on Memorial Day as a family and I would run through the cemetery collecting loose flowers which I would bring home and string into necklaces. My grandparents would drive us through the cemetery in the evenings, past that tiny headstone and the grazing deer. We didn't speak her name much, never as much as now. Grandma never got to see her precious daughter even though she lived for four hours. Her funeral was over before Grandma even left the hospital. My grandma died of cancer just a month after Wyatt's birth and death but his short time with us allowed her to speak more of her daughter than she probably had for some time, if ever. She told me that it was believed she did not have kidneys either. We have met with two genetic counselors and I have always passed that information on but neither ever showed any concern.

When becoming pregnant with Eli a little and began efforts to locate information about her cause of death. Weeks ago that information surfaced in the form of her death certificate. It listed her cause of death as renal agenesis. Those words literally knocked the breath from my body. It is one thing to believe that there is a possibility that you are responsible for your childrens' deaths and quite another to believe that you are likely responsible for your childrens' deaths. With that knowledge I again began seeking medical information, answers as to why this has happened, how? My understanding of genetics let me to believe that it is attached to my x chromosome which would explain why both of our boys had Potter's syndrome. Further research on x-linked diseases showed me that it is highly unlikely so simple because females are carriers and males only are afflicted in almost all cases. There went that theory. And if it were so simple that I could figure it out how could scientists have not found those answers since Potter's syndrome was first recognized in the 1940s. Yes, the 1940s and they still don't know what causes a majority of the cases. I still believe that our Potter's is likely linked by my genetics which hurts so so badly but I have come to terms with that truth. It is one I cannot change, could not have known and may never understand.

Tuesday, May 17, 2011

My Faith Part Three

It took me a very very long time to come to Jesus after Wyatt's death. I tried going to church and tried being thankful for the gifts we were given with him but my feelings of abandonment and anger dominated and church became too painful. It hurt too bad to sit in God's house when I felt that he had forsaken me when I needed him the most. I did things very differently with Eli. I knew what would happen and adjusted my prayers and most importantly my expectations accordingly. I did not expect that God would miraculously heal our child. What I did expect was that he would lovingly guide us to Eli's birth, hold our hands through his life and then take our son into His arms at his death. I believe he did that and now I can truly offer thanks and real gratitude. I have returned to church and not one tear has escaped my eyes this time. There is one thing that still bothers me though. We knew we wanted another baby before we got pregnant with Eli and during the time before conceiving him I prayed over and over for a healthy baby, long before he was a baby, when he was just a wish in the air. It was a mantra for me, just one more healthy baby. When I got pregnant that is all I prayed, over and over, please let this baby be healthy. Now I'm not sure how to pray, what to say, or if anything should even be said.

Friday, May 13, 2011

Trying Something New

I appreciate the support after sharing how difficult it has been lately to live under the expectations of normality. It brought me back to an older post where I talked about this documentation as a way of remembering myself. The me that I was knowing that she would not be for long. Now I'm here, the new me. We're just getting to know each other and truthfully I've been quite reluctant. It's been too easy to hide from her, to justify my behaviors with grief and grieving, sadness and tears. It occurred to me that I would never find out about this new me if I didn't try something new and that something new was living again.

So I did it. Instead of just getting through my day to the best of my abilities, with patience and tolerance, I used humor and joy. It made me realize that although time heals wounds that during that time of healing I would miss so much and risk hurting those I care about most in my absence. There is nothing about our suffering that is fair. Who deserves to lose one child, nonetheless two? Who deserves to watch their young children try to process the death of their baby brother and finally realize there was a little boy just like him that came before them? What couple should have to endure the immense sadness and grieving involved in carrying a baby to term only to watch him die in their arms just hours later and then do it all again less than eight years later? It is too unfair. But there is nothing I can do about those things, they suck and they happened to us. What I can control is me. Who I am, who I want to be and how this person that I am or will be affects the vulnerable family that surrounds me. So today I live beyond my grief for those I love and who love me.

Wednesday, May 11, 2011

I've Seemed to Hit "That Point"

The one that attaches itself to your future the very minute that your child dies. The one when people expect you to be you again. When it is no longer acceptable for you to want to stay home in your own cocoon of solitude which is away from pregnant women, babies, infants and young children (boys in my case). The point where your smiles can no longer be pasted on and your laughs can no longer be forced. The point when you are supposed to apply your mascara in the morning and have lush black lashes all day long. It is when you are supposed to emerge from your chrysalis of comfort re-energized, reinvigorated and ready to not only face life but to live life fully once again with your head held high, smile in place, heels on.

Except I am not there yet. Not even close to be honest. No one asks if I need help any longer, if I need a break, if there's anything they can do. My last and most true supporter has now also abandoned me, perhaps fed up with my grief or maybe with what my grief has done to me. This point probably sucks worse than the immediate aftermath of my child's death. Then I felt protected and surrounded by love. Now I feel alone in the desert, thirsty but too tired to even search for water anymore, desperate for an oasis to find me.

I want, no I need, for it to be okay to not want to be in public because I still dread seeing pregnant women and hearing babies cry, for it to be okay to avoid scheduling play dates for my daughter with her friend's mother because that woman has had five healthy children in eight years (two boys and three girls), for me to take my children to the park less because it is a magnet for pregnant women and young children who are all so much happier than I am, and for me to cry for my sons and sometimes for myself. I am trying to emerge but it's so hard and so much harder when all I feel is the weight of others' expectations.

Monday, May 9, 2011

It Came, I Saw, I Cried

Mother's Day. I am thankful it is over. It was such a difficult day, the most difficult by far. When I carried Wyatt through that very first Mother's Day it was just my husband and I. We were able to have a quite, gentle day. The year after when pregnant with our daughter it was a sad day but it was lined with hope and again it was just us. This year was so . . . different.

I could not have prepared for the range of emotions I experienced yesterday. I woke up to the beautiful voice of our almost seven year old who promptly dropped her Mother's Day packet (which she made at school) onto my chest and hopped out of the room. Our other daughters soon followed. It was the most delightful way to wake up. After my husband made breakfast I began to get ready for church. I began to cry, not just tears rolling down my face but full out sobbing. Of course this was after I applied my mascara and just before we needed to leave for church. It was then that I knew I was not going to make it to church, the tears would not stop.

I cried the entire way to the cemetery. We spent about an hour there. My daughters picked dandelion bouquets and I dug and pulled grass from the rock area around Wyatt's grave marker. My work kept the tears at bay. I felt almost as though a thick fog had entered my body. I easily became disoriented and forgot entirely what I was doing. Thankfully our daughters busied themselves by playing in the backyard most of yesterday. It was so unusual. Usually we go to the zoo because mothers get in free and get to ride the train for free. We usually go out to eat with my husband's parents and top it off with a good helping of a very unhealthy dessert.

Not yesterday. I couldn't go out in public. I was paralyzed by what I would see. Which in my mind would be primarily babies and pregnant women. How could it not be? I biked our two youngest to the park last Friday and it ended up being us and a woman with four boys under the age of 5, the youngest of which were twins probably less than 18 months old though I can't say for sure because I couldn't bring myself to look.

It was such a fine line letting my daughters celebrate me while I celebrated the sons I can mother no more. I am glad to get past another first in a year of so many, one that I will never occur again.

Thursday, May 5, 2011

Reflections on Mother's Day

My first Mother's Day was spent childless. (Though technically I suppose this is not true because I was eight months pregnant with Wyatt the Mother's day before, swollen with the reality that our baby would not survive.) But the year after, my first official Mother's Day I was almost nine months pregnant with a healthy little girl and missing my first little boy with all my heart. I was lucky that day for many reasons, my impending daughter being the most obvious. But I also had almost eleven months to prepare for that day. And despite every day that transpired between Wyatt's birth and my first Mother's Day, 339 to be precise, it hurt bad. The year after was filled with giggles, snuggles and kisses from our little girl and the years after that I was joined by two more daughters.

This year of course is different. This year we should be celebrating with another, Eli. I should be glowing and radiant in my motherhood, just eight weeks old. I suppose I am if you consider a small chest, flabby midsection and dark circles under my eyes radiant - I however, do not. This time I have only had 58 days to prepare and it hurts worse.

I will celebrate Mother's Day anyway. Not for my husband or my daughters but for me. Mother's Day is for mothers. It is a day to recognize ourselves and the great labors we have endured to bring our child or children into this world. Regardless of how or when that child or children left or will leave the earth, their birth(s) make us mothers. Motherhood is not something tangible. It is not measured by the rooms in a house or the seats in a car. It is innate, private, even intimate. It is unique to each woman in what it means.

Mother's day is a day to embrace our children, either in our arms or our hearts. A time for us to reflect on our love for them. I have lost two little boys who never lived to see the sun set and a pregnancy that never progressed to a first kick. But I gained from those losses too. I gained a greater respect for life and the fragile process of bearing a child. I gained perspective on taking things for granted and which fights are really worth fighting. I gained moments so pure that time can never erase them, moments when I first saw my sons, their very first cries, the first time I touched their skin, moments they snuggled into my chest and their very last moments of life. I dreamed dreams for their lives at the beginning of each pregnancy and revised those dreams to be just a little smaller later on. I think of them always and love them even more often. These are the things that make me a mother. These are the things I will celebrate.

Tuesday, May 3, 2011

Fitting the Jeans

My latest greatest struggle. After having my 3rd child I lost about 20 pounds beyond my pregnancy weight. I chalk it up to breastfeeding, the introduction of fruits, veggies and portion control as well as running. The weight literally just melted off. I gained and lost my "normal" thirty pounds or so with my next pregnancy, our youngest daughter. With Eli I was careful with weight gain and exercise from the beginning. I exercised throughout the pregnancy, literally until the day before he was born. I gained a few pounds less than normal though he was a bit smaller than all of my other babies. Since I have not had a baby to tend to and have been sleeping through the night most nights I have had time to devote to my physical well being. And I have. I got on the treadmill for the first time the week Eli was born. Since then I have been walking, and now running, my butt off. Or so I had hoped. It's nowhere near off. I hit my weight loss plateau at about the two week mark and I could not be more frustrated (though in all fairness I can fit into more clothes than I did at two weeks). I'd been walking usually two miles or more a day until the six week mark and now I've been running at least 2 1/2 miles at a time, using the elliptical on other days and have added in weight training and yoga. I have also paid close attention to my nutrition and have adjusted my calorie intake post pregnancy. Not to mention I keep up with three girls under the age of 7 on a daily basis!

I understand I may be a little impatient and to be honest I have no real specific recollection of how long it took me to lose my pregnancy weight with each pregnancy. What is sticking in my head is that I lost all of my pregnancy weight but maybe two pounds after having Wyatt by the time I got pregnant with our oldest daughter less than four months later. Perhaps my expectations are too high and really they almost always are, but it's such a sore spot!

Our lives appear normal and for the most part they are. My husband goes to work every day, my daughter to school and I continue to hold down the home front with our youngest two. It's kind of like the old Sesame Street game about one of these things doesn't belong. The ten plus pounds or so that stand between me, my jeans and feeling good about how I look. They don't belong.

I am going to take a deep breath and head back downstairs to the treadmill. It just has to start making a difference, right?

Monday, May 2, 2011

Wyatt & Eli's Garden update

First off, thanks again for the suggestions in response to my earlier post. We sat down this weekend and worked out what I hope will turn out to be a joint garden of sorts. Having had four children and planting a tree for each in our backyard we did not have a lot of room to work with for Eli's tree. I believe that we have settled on a pee gee hydrangea which we will trim up like a small tree. To me it's just the perfect symbol for El - small and beautiful. It will be planted in an adjoining garden to Wyatt's willow tree. We will remove the circle border around Wyatt's tree and make an oblong border to include both boys' trees but their gardens will be distinctly different. When we have planted Eli's tree and connected the gardens I will then see if I can work in the bridge as I really like that idea and maybe put a small dry creek bed in to make the bridge seem more at home. Alas, today this is only an idea since this weekend, April 30th, we experienced blizzard-like snow which has now melted but left us with early spring temperatures. As soon as spring arrives we will begin work in our gardens!


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