I Don't Know What I Don't Know

Anyone who visits/reads will likely have noticed that my waterfall of words has been reduced to a trickle. Wyatt would have just turned 13 in June (a teenager!) and Eli 5 in March (almost a kindergartner!).  It is not too hard to imagine what they would be like as each has a younger sister that is almost one year younger to the day. The whole gender difference is boggling to me though. I honestly have no idea what it would be like to have one boy in my house of ladies, nonetheless two. In my imagination, I hold them out as the balance our family badly lacks at times. There are days, hours, and minutes where it is just way too much girl in this house. That is where my thinking leads me down a path that I just can't follow most of the time. My heart aches so badly to have that boy in our house. Any way I could get him - foster care or adoption. Four girls in a four bedroom house already seems too much. We don't have a ready room, would lose our crafting/office/have to rearrange almost the entire house and would only be adding another person to an already stretched parental structure at times! There are so many reasons which make it a really bad idea but the heart doesn't usually listen to logic, does it? So far, logic is holding strong and I am keeping my crazy ambitions reigned in. It's hard though to hear my daughters say how much they would love to have a brother. I don't know if there would be a more loved little boy in this whole world. But no one could ever replace the two I will forever miss and that is a truth that I've lived with every day for thirteen years now.

Why Does Christmas Always Hurt So Bad?

Christmas has hurt worse than ever these last few years, ever since we lost Eli.  I've put extra thought into why this year and come up with a few possibilities.  One is the difference between the boys' pregnancy timelines.  When I was pregnant with Wyatt we spent a blissful, ignorant and happy Christmas season.  We received his Potter's diagnosis less than a month after Christmas.  Eli was diagnosed just before Thanksgiving and so I spent one of my saddest Christmases ever.  Surrounded by my entire family, pregnant and suffering in silence.  Very very few times was my pregnancy even acknowledged.  It was so sad.  I wonder if I'm haunted by that pregnancy.  If it has somehow carried a shadow through each year.  Same house, same decorations, same family members, etc.  When I was pregnant with Wyatt we lived in an apartment and I never spent another Christmas in that place.

The second possibility has religious roots.  I'm Catholic and so Advent is our time of preparation for the tiny Savior's arrival.  I find it hard to prepare myself in any way for the birth of a boy.  It has too many parallels for me.  I wonder if anyone who has lost girls struggles with those same thoughts at Christmas or if gender really does have a part in this.  I also remember my preparations for Eli's birth which was less than three months after Christmas.  It's just too painful.

I wrote a few years back that our family was able to escape and that was a wonderful Christmas filled with less sadness.  I don't know if it was because of the exciting things we were able to experience with our girls for the first time or the change of scenery or a combination of both, all I know is it was different.  This year is not.  I drug my feet in every way possible when it came to holiday preparations.  The only thing that really keeps me going is my children counting on me to hold fast to our own traditions.  Others that are not as important I am letting go.  Something has to give.

Cemetery Woes & Unexpected Healing

Recently our cemetery announced proposed rules.  But not just any rules.  These are rules.  Because the last set of rules prohibited horses in the cemetery.  The new rules were requested by the current cemetery caretaker who is a nice young man overwhelmed by the amount of decorations and plantings around gravesites at our cemetery.  The sheer number of items and decorations on and around the graves make it difficult for him to keep the graves neat looking and properly trimmed.

At first, I was outraged.  The rules proposed banning all artificial flowers, all grave decorations, all solar lights, shepherd's hooks, wreaths, benches, etc.  All that would have been allowed were fresh flowers and artificial flowers for a two week period around major recognized holidays.  Well, you better bet I did my duty as a citizen and showed up at the city commission meeting (who oversees the cemetery) and voiced my opposition to these rules.  Why?  Because we have a bench, a wreath, a shepherd's hook, solar lights, a rock border, artificial flowers and tons of little birthday and Christmas gifts scattered along the lip and rocks bordering our headstone where Wyatt rests.  Eli rests at our feet and has a flat stone so we are unable to put anything at his stone.  You know what happened?  The commission decided to form a committee of people both for and against the proposed rules to hash it out.

I volunteered to serve on that committee because I felt so strongly about my opinion that I wanted to be part of the change, whether for good or bad.  So through the course of about six hours over two meetings, which included a walk through of the cemetery to see and listen to the caretaker show us why he believed the policy was needed, we came up with a new proposed set of rules.  There were tears and disagreement during our meetings.  Three of us opposed the rules and three supported them.  We were different ages and tended many different kinds of graves.  We listened carefully to the opinion of the caretaker and he listened to us.

The end result was a set of rules which is respectful to those who choose to remember their deceased with flowers and items but respectful of the caretaker and those who were seeking a neater looking cemetery by limiting the kind and scale of these items.  We have taken our bench, shepherd's hook, solar lights and many small tokens home.  We cleaned up most of our rock border but left the marigolds we planted this summer.  We'll plant more again next summer along with some moss rose and we'll leave fresh flowers for the boys' birthdays which can then be mowed over later.

I was forced to look at the cemetery and my own displays of grief from a different perspective.  Did my boys need all of those things I put out there for them?  No, they were for me.  But did they really do anything real for my grief?  Probably not.  It was therapeutic to remove many of the items which were faded but my own grief had prevented me from removing them.  I just couldn't take anything else from the boys who were taken from me.  I also was able to see that I searched for items that were being marketed to me as a grieving person and I don't really like that there is such a large market aimed at grieving people.   It already takes a lot of money to lose a loved one.

I am excited for the spring when all of the graves are cleaned up and our gravestone can finally be neatly trimmed more often than not by the mower, rather than having to rely on a hand trimmer because our bench and rock border were in the mower's way and of course with four young kids at home we don't get to tend to the grave as often as we would like to.  I want it to look neat and respectful.  I told the caretaker that he has a special job, he is caring for our loved ones' resting places in our absence and that is a labor of love.

I was able to present the new set of rules to the commission, tell my story and explain why I supported the rules even though I would give up so much to abide by them.  I think it was a powerful position to take and one I hope that eased other's pain a little as they approach their own loved ones' graves this fall.

Change is change.  It is not always bad and more often than not an opportunity to find good or start anew.

The Hidden Grief

I was saddened to see Vice President Biden's son has passed away from cancer but surprised and appreciative of comments that our Vice President recently made about grieving were highlighted as a result.  Biden has long lived under the shadow of grief though you would often never guess from all of the public appearances where he is flashing that huge smile.  Same goes here.  I've thought and said it a million times I think.  Sometimes I just wish I could have something that signifies - "Lost two infant sons at birth" so people around me might just understand or give me a break when I don't have that big smile plastered across my face.  I do find joy and I do have peace in my life.  Time has eased the most painful memories farther back into my consciousness which allows me to recognize happiness and feel happiness in a way that I couldn't for some time after each of my sons' passing.

But there are still those moments.  Our youngest daughter recently turned three, just a little over a month after we celebrated Eli's fourth birthday.  After Eli died I made our older three daughters each a little photo album with photos of Eli and our family and Eli (some that the girls took with their own cameras that day).  Well, the little one had been sneaking her roommate's album and began asking for her own.  It was something that until then I hadn't really given a thought.  Of course she should have her own.  She talks about when Eli was in her belly and what a cute and tiny baby he is.

Then something else I hadn't given much thought to was brought to my attention.  Wyatt.  She should also have pictures of Wyatt.  Why I didn't just do that when I put the other one together I don't know.  I guess because Eli was more real to the girls because they touched and held him and Wyatt was born before all of them were even a speck in our eyes.  I don't quite know for sure what he is to them other than a treasured name and birthday.  So I gave the little one pictures of Wyatt too and now she talks about when he was in her belly and she held him.

I know these are fleeting moments, but I wish they could last forever.  It is a bittersweet experience to hear their names and really look at their photos so often, but it is such a blessing that she says them aloud and cherishes their images as much as I do.

Yet all of this is hidden just under the surface.  It's not something I can freely share with many people.  Grief just isn't a topic of conversation much beyond the funeral.  I've mentioned before that our parents don't always even say something on the boys' birthdays, but our siblings never do. But it's still there.  We still think of them and miss them and catch glimpses of what could have been.  The loss of a child is a profound sadness that you can never outrun.  It's something that will drag you down into the depths of a seemingly endless dark pit and it will hold onto you.  It is easy to understand feelings of desperation and no way out when you're towards the bottom in complete blackness.  It is easy to feel like the sun will never shine again when it has been so long since you've felt it on your face.  It is hard to feel like there is anything else out there but the blackness that surrounds you.

When I was putting the pictures of Wyatt and Eli together I noticed something I had not before.  I wasn't looking for it but it just jumped out of the photos.  In the photos where it was my husband and I with Wyatt we looked so very sad.  It was painful to look at those photos.  It was painful to remember those moments.  I thought "of course we did".  Wyatt was our first child.  We had no idea how he would die or how quick it would happen.  We were in the blackness not knowing what would happen next or how we would weather the next storm.  We were fully submerged in our grief.  In almost all of the photos I'm crying, even the ones where I'm smiling.  My face is puffy and just sad.  But in the photos of us with Eli we look truly happy.  My smile doesn't feel so sad.  I wonder if the difference is because I knew with Eli that we would be okay.  I knew the pit wasn't bottomless and I knew that even though I couldn't see it, the sun was still shining and eventually I would again bathe in its light and warmth.  Both of us just looked -- happier.  Even though we were given less time with Eli and he was the second son we had lost on the day of his birth to the same frustrating medical condition.

Grief is ever present, ever changing and more often than not, ever hidden.

Who is it for?

Frequently I drive by a house in town which has a large wooden cutout angel in front with a beautiful lattice border around it.  On the angel is a female's name.  It is not clear whether this name is a daughter, sister, friend, wife or mother but what is clear is she is a very special person to someone or many someones in that house.

That got me wondering.  Why is the angel displayed so publicly?  Is it in remembrance of that person  or is it to remind others that this family is still suffering her loss?

Ever think about these public displays of grief and grieving?  I think in some ways we all do it.  I have photographs of Eli & Wyatt displayed proudly in my living room.  We hang their stockings at Christmas.  Their names are included on our family signs hung in the house.  I have their names engraved on a ring along with my daughters' names and I wear that constantly.  I don't hide them to make others more comfortable nor do I parade them out to display my losses.  I have simply woven them into my life.  But on some level I think some of it comes from a desire to have others recognize that I am not who I used to be and that the grief of those losses has profoundly changed me.  I need for them to remember, not necessarily for my sons', but for me.

Holidaze & The Christmas Box

It's that time of year again.  Really, it's always "that time of year".  Either I'm anticipating one of the boys' birthdays, just celebrated one of their birthdays or I'm facing another holiday season without watching them search for their Easter baskets, carrying their Halloween bags stuffed with candy bars, setting them a place at our Thanksgiving table or ignoring the two empty stockings on Christmas morning.  That's life after loss, right?

This particular time of year is especially hard for me, even though it's been 11 years since Wyatt was born and 3 since Eli was born.  It's still hard and I know it will always be.  There's just something about Christmas for me.

A few years back I wrote this post about what our family does to celebrate and remember our boys each year.  Not much has changed.  We still try to find a local group where we can choose a child that would be each boys' age to buy a gift for and we still try to donate toys when possible as well.  Even in the deepest snows we trek out to their grave site to clear the snow and stand by their Christmas tree for a moment.

Each year on December 6th at 7pm, our family attends a Candle Lit Remembrance Service where we hang ornaments with our sons' names on them on a special Christmas tree alongside many other little ones' ornaments who are no longer with their families.  It is a special time for us to focus just on our boys in the busyness of the holiday season.  We also have an Angel of Hope statue which is derived from the Richard Paul Evan's story "The Christmas Box".  You can read more about the angel and the story here.

Whatever you do this season and wherever you are in your grief, I encourage you to listen to your heart.  If you need a break, take one.  If you need to say no, do it.  The holidays are stressful and busy enough without the added burden of grief and longing.  We find that at Christmastime more than ever we just need time by ourselves.  Create traditions that honor your family and your memories.  It's okay to break old ones and start new ones.  In my opinion, a tradition is only as good as it makes you feel.  If it doesn't make you feel good and able to share warmth and happiness with your family, then what is your family going to remember by honoring that tradition?

My husband and I have made some significant changes to how we celebrate Christmas with our children.  Over the years, how we view Christmas has changed.  What we see and feel has changed and how we celebrate has needed to change as well.  Our families may not understand, but it has been important for us to hold true to ourselves and it is an ongoing process each year.  The year I was pregnant with Eli we found out about his Potter's not too long before Christmas and I spent many an evening sitting in the dark of our living room with only the light of our twinkling Christmas tree rubbing my belly and sorting through the depths of my emotions.  Years later staring at that same tree in the dark as it twinkles the same way it did then is oddly comforting.

May you find something comforting this holiday season and hold fast to it.  Blessings.

Third Birthday Wish to My Sweet Eli

Three years ago today I gave birth to my second and last son.  The pain of that loss is  - unimaginable.  No number of children, laughs, smiles or incredible moments can replace those precious few hours I spent with my son and so today I sit here with tears streaming down my face missing him more than I thought possible.

Sometimes life is about reframing.  My life's frame cannot sit squarely on my sons and their absence.  I would be an disfunctional mess.  So I've had to shift focus.  Eli and Wyatt are still in the picture, they're just off to the side and a little blurry.  Never left out but only allowed to take center frame on two days of the year, their birthdays.

The salve that I've applied to my broken heart his year is that Eli lived almost his entire life in my body.  He knew mostly me.  He knew the sound of my voice, when I was happy, when I was sad and everything in between.  He felt my body wracked with sobs and my belly bounce with laughter.  He heard me singing to him and felt my soft caresses.  He slept to the sound of my heartbeat.  This brings me a measure of happiness.  It is amazing to me that I can still remember so much so vividly three years later, and almost eleven in Wyatt's case.  The feelings are still there, they don't leave.

So happy birthday, sweet Eli.  This year you have a special treat.  Mommy baked and frosted the usual chocolate cupcakes but your three older sisters decorated them and they are spectacular.

And the Heaviness Settles In

Winter has overstayed its welcome in a most uncomfortably long cold way.  A chill has settled deep into my bones and I just can't shake it.  Along with that, the sad anticipation of my littlest son's third birthday.  It seems impossible that just three years ago I gave birth to a sweet baby boy.  My life is so devoid of boys, it's a wonder my husband has any testosterone left!  Four girls with dolls, dresses, leggings, princesses, tutus and tiaras leave little room for toy car longings.  Yet I am ever reminded that he was real, my arms still carry the memory of his tiny body.  This time of year my mind just turns to mush.  Its evident in what I can remember, what I forget and even how I write.  Nothing seems to make sense.  Which is probably completely appropriate considering that Eli's absence still doesn't make sense.  My daughters' questions about why their brothers had to die don't have satisfying answers.  The day will come and go as it does every year and I will muddle through the next few weeks until that day passes with a heaviness in my heart and a bit of extra missing for my sweet Eli.  Time has done little to dull my pain but has done wonders with my coping mechanisms.

Deceased on his Birth Certificate? Ain't that a kicker?

I am in the process of registering my 5 year old for kindergarten this coming fall and I need a certified copy of her birth certificate which I have never requested before.  While I was doing that I requested one for our littlest girl and sweet Eli.  I have Wyatt's which we requested shortly after he was born but for one reason or another I just couldn't do Eli's until now.

A few days later they arrived in the mail.  I was excited to have that proof of life in my hands.  But what to my wondering eyes did unfold but the bolded word "Deceased" printed right below, right frickin' below, the words "Certificate of Birth".  Then, to add insult to injury, Deceased was stamped in large red ink across the bottom.  So much for his BIRTH CERTIFICATE.

This, combined with the fact that it was December 7th, the Christmas Box tree lighting ceremony where we hang ornaments for the boys each year at our local hospital, and the Christmas missing them blues just set me off.  And when I say set me off, you may not believe how far off I went.  I went straight to my best friend, Google, and got to work.  First, I looked at the birth certificate information for my state - nope, no mention that it would have the word deceased splattered all over it.  Second, I researched to see if it was required to be printed on the certificate.  Nope, not by state law or regulation.  Third, I got on the phone and called the State Registrar.  That didn't go too well.  I was told it was required by a model law, which of course is not true unless your state has adopted the model law which mine has not.  I was also told that it's in the standard computer printing and they can't change it.  Not entirely true either.  Fourth, further incensed by the door being slammed in my face despite my very legitimate complaint, I went back to my good friend and looked at what other states do.  There are a number of states that offer a more expensive heirloom certificate which does not have deceased marked on it.  There are a few that allow a special process for parents who have lost their children, such as myself.  So, then I got back on the phone and spoke with the State Health Director.  Gotta love living in a state where you can actually speak to state officials the same day you call them!  I didn't get a better result but instead a promise that the issue would be looked into further.

Fast forward, I got a call today and the compromise is a complimentary certified birth certificate without the red stamp on it.  It'll still say "Deceased" right below the word "Birth" which KILLS me but I'm going to try to find a way to cover it up discretely.  What I didn't mention above is it all boils down to fraud and is at least in part derivative of September 11th.  Damn terrorists and damn criminals.

Who would have thought something so simple as requesting my son's birth certificate could cause so much pain?  I'm considering approaching my local legislators about creating some kind of heirloom certificate here which would be that extra option for people like myself who want a birth certificate as a proof of life, not a reminder of death.  How sad this world has become sometimes.

I Couldn't Outrun the Holiday Blues

We just returned from our first big family vacation - EVER.  The most we've ever done is visit family.  This year we took our own family to visit magical places.  The whole process was time consuming.  Packing for four kids, one still in diapers, and myself for two different locales with specific clothing and footwear needs was tricky.  Plus, we spent two whole days getting to and from our destination which is also tricky with four young children, one still in diapers.

So where did we go?  Disney World Magic Kingdom, the beach and Sea World.  It was an amazing vacation filled with unforgettable memories and, at times, overwhelming sadness.  My boys were never far from memory.  Our vacation timing, right over Christmas, was not a coincidence.  Christmas has always been special to my husband and I since we married just before Christmas twelve years ago.  We spent part of our honeymoon at Disney World and the beach.  I have long wanted to share that trip with my children.  

But there was a hidden agenda to the trip and the timing.  Part of it was the above and part was just escaping what has some years become sheer madness at the holidays with family, presents, lists, cooking, etc.  I needed a year off, some breathing space.  Some space to grieve too.  One of our favorite things to do at Christmastime is to visit our sons' graves on Christmas Eve to deliver their presents and see their sweet little Christmas tree lit up in the snow.  With all of the other goings on the time left for that special trip has become less and less and things just weren't on the right track.  

So we packed up and went to Florida, just us and our four little ones.  I bought Wyatt and Eli Mickey Mouse ears with their names embroidered on the back and barely managed to avoid the awkward conversation about who Wyatt & Eli were with the store clerk.  I have a pair of ears myself from my first trip to Disneyland and a Minnie pair from my first trip to Disney World and we purchased each of the girls their own so it was very important for me to get the boys their ears since this would have been their first trip too.  I wrote their names in the sand at the beach and at Sea World we got them a Shamu and dolphin for their graves this Christmas.  

Those aren't the moments that got me though.  Grief was complicated.  I almost lost it on the airplane with my extremely fussy 20 month old exhausted and sleeping on my lap.  When Cinderella's castle was lit with hundreds and maybe thousands of Christmas lights so it sparkled from bottom to top my eyes sparkled too.  

I learned yet another lesson.  It doesn't matter where I am, how happy or distracted, how sad or uncomfortable, how busy or how stressed, the holidays will always have the same effect on me and my boys will always be extra close to my heart in those days.  

Santa, you can commit this wish to memory because it will NEVER change:  all I want for Christmas is my whole family to be together.  My second oldest told me out of the blue that she wished Santa would bring something for Wyatt and Eli.  She remembered this wish when we arrived home late Christmas evening and she looked at the two empty stockings.  If only.

How to Keep Swallowing That Lump In Your Throat

My post on grief relapse somehow didn't include one extremely important occurrence which I somehow forgot...the first Potter baby to survive.  I've posted about this before and since it has received media attention because her mother is a member of Congress.  It has caused hurt and controversy and of course, is a beacon of hope for those of us who have walked and are walking through the darkness of infant loss due to Potter's.  Many suggest that little Abigail can't have true Potter's, that perhaps there is something that the public doesn't know, tissue that was not reported on, etc.  Others believe it's a true miracle.  Even the congresswoman herself touts it as a miracle.  

I understand that point of view completely and if her baby had been my first Potter's baby I would probably say very similar things.  But my reality is my own headstone with two little coffins buried in between my husband and my final resting places.  So, I respectfully disagree that her daughter is a miracle.  Her daughter is the product of medical patients who were able to access medical professionals who were willing to do something that went against the grain.  Doctors who were willing to try something that appeared to be effective instead of standing behind the already delivered death sentence.  Maybe that behavior is miraculous but I don't believe it should be.  For any medical condition.  Period.  We should all have access to the best health care and to the doctors and other medical professionals who will listen to their patients, treat their patient's conditions and be willing to work with patients to achieve the best possible result in every situation.  

I digress.  This has bothered me on a very subconscious level EVERY SINGLE DAY since I first found out about it.  I don't and I can't dwell on it because there is nothing I can do to bring Wyatt and Eli back.  What I can do is spread the word and through my words encourage others to find answers and treatment.  But this all just really kills me in so many ways.  Of course I'm relapsing.  I've lost 2 sons to this condition and the most recent only 2 years ago.  Of course.

Relapse

Two years later and here I sit in front of my computer typing the word "relapse".  I can't put my finger on it but I'm fairly certain that I am experiencing a relapse of grief (from which son, who knows, my guess is Eli).  It's not that I find myself staring at pictures or holding their things.  Not at all.  I suspect it from the way I feel.  The feelings of isolation, of no one understanding me, the feeling of just wanting to crawl into a shell for a while.  The tears that are constantly beneath the surface but barely spill over.

I don't know the whys and the hows for this one, I am taken completely off guard.  There are many possible triggers in my life right now so it could be any one or a combination.  I've been feeling off for weeks now but it wasn't until after I was able to have a really good cry while looking at Eli's picture (my one and only really good cry for a long long time) that I admitted what my subconscious had been thinking to myself and out loud.  I was pretty sure that the grieving process just wasn't done with me yet.  My good friend the internet was very helpful in letting me know I'm not crazy and that perhaps I didn't fully grieve after Eli's death.  That seems possible, if not likely, considering I had three young children to look after and in the grand scheme of things my life only stopped for a moment for me to grieve before I was plunged head first back into the harsh reality of daily life outside my cocoon of sadness.  I can't pinpoint any particular thing that I didn't grieve but that's the funny thing about grief I suppose, it's different for all of us in every way, shape and form.  I'm different than the first time I grieved the loss of a son so my grief was very different the second time around.

I'm writing this though to let you know that it can happen and that if it does, it's important to tell someone.  I felt ashamed that this could be happening to me so far down the road but shame doesn't solve problems, it only creates more.  I'm looking at this like a very small and untimely speed bump on my road and I will work my way over it just like I have all the others.  One of many.  One of many.

Letting Go

I have a love/hate relationship with gardening.  I find it to be a very strong extension of the process of learning how to grieve, grieving and living with long term grief.   You see,  I live in a climate which has four very distinct seasons that are not always equal in length.  So each spring I wait for the soil to warm and then I get to see which of my perennials have made it through the winter.  Often, some of my favorites don't make it and others are unexpectedly prolific.  Plants die for no reason, die because of the season, some are expected to live short lives and others take a lickin' and keep on tickin'.  Sometimes there is just no rhyme or reason as to what goes on in my garden.  So I have to

Let Go.

Just like ten years and two months ago I listened as Wyatt's heart stopped beating and two years and five months ago I knew Eli's time on this earth would be very short.  Every fiber of my body wanted to hold on and never let go.  Yet I did.

Letting go was not just a matter of relaxing my grip.  It was a gradual process of relaxing my heart, relaxing my thoughts and letting the string unravel.  I still have that string but I don't need to cling to it to remember it's there.

My garden is my classroom.  It teaches me that I am not always the boss of things, even things that I feel are simple and well within my control.  No matter how many times I plant or replant, water, fertilize or pray, if that plant doesn't see fit to grow in the soil it won't grow.  Finding strawberry plants that I didn't plant in Wyatt's garden is proof that I am not the architect but merely a caregiver to nature's design.  My best efforts are just that, efforts to learn, grow and cultivate beauty.

Nature has been particularly cruel in my yard this year.  Wyatt's tree was ravaged by disease and was cut down.  The willow's absence has been a painfully sunny reminder of our loss this year.  Rabbits have ravaged our yard inside out it seems.  They have attacked my raised vegetable gardens and seem impervious to any deterrents.  But veggies are not enough for these furry fiends.  No, they have also stolen the beauty from my garden and kept entire flower species from blooming by chomping down the buds.  I can only hope the winter is long and food is sparse.

Yet even though so much is out of my hands and the unpredictability tends to drive me CRAZY, it is a daily comfort.  It still needs my help to thrive, even in ways that are unplanned.  I still have to work to let go enough to let go sometimes.  I've learned that sometimes letting go results in beauty growing in ways that I could never have imagined.

Change is Painful

Today I read the beginning of an unfinished story which reminded me that change is painful but worthwhile.  Congresswoman Jaime Herrera Beutler delivered a baby girl, Abigail, a few weeks ago.  Her daughter is a very special little girl.  A very special little girl born with Potter's Syndrome who is still alive.  Herrera Beutler received amnioinfusion treatments weekly for five weeks and Abigail has been receiving specialized dialysis treatments.  She was born at 28 weeks but doctors say she has fully developed and functioning lungs most likely due to the amnioinfusion treatments.  Her story remains unfinished but it brings hope and pain to those of us who have been touched by Potter's.

My initial reaction was a gut wringing ache as I thought of my own sons and my questions while pregnant.  Then I thought of all of the doctors who have told us this was not possible and the hours upon hours of research I did on my own.  I appreciate that Herrera Beutler frankly admits that many doctors told her survival of her baby was not possible.  But the pain comes in that she had medical treatment and connections available to her, likely in part because of her political position (but this is strictly assumptive), that were not available to me.  I sought that same treatment for Eli but because the medical professionals I saw had no proof of it working they were either unwilling or uninterested in finding someone who would try.  Without that help, as I am sure any other "regular" person can relate, it is extremely difficult if not impossible to find that extra level of medical care and treatment.  So this story is a double edged sword to me.  It is amazingly hopeful to hear of Abigail's survival and I pray she is the first of many Potter's babies.  But at the same time it is woefully sad to realize that perhaps had more medical professionals been willing to explore this avenue of treatment that Abigail would only be one of many to have survived Potter's to this point.

This is all speculative I realize.  I don't know how Abigail's story will end and I don't know how her story will impact others.  What I do know is that change is painful but necessary.   Without bravery, hope, persistence and enormous amounts of fortitude in the face of failure, change cannot be realized.  Herrera Beutler's family, Abigail included, have already accomplished more change than they may ever realize.  I pray that this change extends far beyond medical journal articles to the lower tiers of medicine where it is desperately needed - to Potter's families.

I am missing my sons more than ever today.

Ushering in a New Period of Mourning

My littlest little girl is going to turn one next week and I find myself not only now sleeping mostly through the night but also feeling that old pull.  The one that catches my eye as I pick out our infant daughter's clothing in the morning.  Those little boy outfits that have been hanging in that same closet on the same hangers, untouched, for about nine and half years now.  The ones for my son.  The baby blue Winnie the Pooh outfit lovingly washed and hung, ready to wear.  Frankly, those outfits have done nothing but make me angry lately.  Angry because even though those outfits weren't for Wyatt, they were for Eli.  He was the son that came after Wyatt.  He was my boy.  I knew it soon after he started growing in my belly.  I knew he was a boy.  I knew it just as surely as I knew that something was wrong with him before I even walked into that ultrasound room.  What I knew then doesn't matter now.  I now know that I will never again hold another little boy from my own body and that I will forever mourn those two little boys I did get to briefly hold but that I will also forever mourn the absence of another son.  At the same time there is great peace in my heart knowing that I will not carry another child.  There is a very real possibility that we could have had another child with Potter's syndrome.  I am so thankful to have welcomed our healthy little girl one year ago.  It has been healing for all of us.  After Eli died I wrote about how heartbreaking it was to watch our three daughters love him and then have to say goodbye.  They had empty arms too.  I have now filled their arms and their hearts.  They still miss Eli and talk of him often.  We know that Baby cannot take away all that hurt but we did not expect that she would.  She just fills a different place in our hearts.

Healing is a Recurring Theme

I'm Mandy, I've had six children, but only enjoy two on earth because my two precious sons died the days they were born almost eight years apart due to Potter's Syndrome bilateral renal agenesis.  This blog is my story and in telling that story for the past two years I realize that I have a recurring theme - healing.  That's because in the almost ten years - yes, ten years (which caused me to tear up when that hit home today) - since I lost my firstborn, Wyatt, I have been in the process of healing.

I'm preparing to go under the knife (dental bone grafting to help fix a lovely congenital defect on my side of the family - ugh!) today and find myself thinking a lot about healing.  My gums will close up around the graft and with the most minimal help from me and my hygiene, they will heal and hopefully grow lots of bone thereafter.  Most wounds will do that.  They just heal so long as we keep them clean and undisturbed.  Which makes me wonder if the human brain has a similar capacity.  How does our mind heal from such a damaging wound as a child's death?  Would my brain heal these wounds much easier if I would just stop sticking my finger into them?  But how can I not?  How can I not remember the days of my sons' births?  How does a time of year, outfit, flower or even a scent not remind me of moments when I carried them in my belly?  I don't know but it interests me.  The human body has a remarkable capacity for healing so it's logical to believe that the human mind does as well.

I'm a healing in progress.  Imperfect.  Broken.  But healing.

Something Different About a First Child

Eli's second birthday is quickly approaching and I find myself this year, for the first time in two years, not pregnant in February.  The memories of the last two years haunt me during these few weeks.  My husband's birthday and our second daughter's birthdays are also rapidly approaching so it is hard not to remember our celebrations last year and how joyous (and plump) I was compared to the year before when I was just a little less plump and a whole lot less joyous.

But the pregnancy, birth and loss of Eli was different from Wyatt's.  The knowledge of what was to pass made things easier but so did my children.  For all of my worry about what Eli's death would do to them and then when he did die, having to watch my children suffer through the same emotions that I felt, it was nothing like watching our first child, Wyatt, die, and living through the aftermath.  I now know why.  Because when Wyatt died, in a way, so did my motherhood.  I had nothing but pictures, a few clothes, blankets and stuffed animals to remember him by and to identify myself as a mother.  But without the baby those things could not be so readily displayed and I found myself visibly robbed of claiming that identity.

When Eli died I suffered through many of the same emotions and difficulties.  Some of the worst for me was my milk coming in and still looking pregnant but not having that baby to make it all worth while.  But I was still a mother to everyone else.  I had three little girls at my bedside the day I gave birth to him and every day after.  They needed me and more than they'll ever understand, I needed them.  They gave my days purpose and eventually they helped me to see the little joys again.  After Wyatt died it was just my husband and I.  But he went back to work and then it was just me alone with my grief and my wounded body.  Physically and mentally I probably healed more peacefully since I was really able to go at my own pace.  But it was so lonely and overwhelming that I ended up going back to work as soon as my doctor would let me.  We tried to fill our hearts by getting a dachshund puppy but her needs and our abilities to meet them did not quite match up so we made the gut wrenching decision to find a family who could make her happier.  That didn't exactly help my grieving process.  But neither did banging my head against a brick wall over a five pound puppy!  It just wasn't the same.  My husband gives me an identity as a wife but only my child could identify me as his mother.

So with Eli even though it was physically, mentally and spiritually exhausting to care for our children while going through a pregnancy that would end in loss and then experiencing that loss and trying to heal from giving birth via c-section, it was those three girls that saved me.  They kept me afloat and for that I am so thankful.

Lenten Observance

Tomorrow is Ash Wednesday or the beginning of the Lenten period in the Catholic Church.  Yesterday marks the one month countdown to Eli's second birthday.  Sunday was weekly mass.  Sunday I found myself thinking about one month from yesterday (Eli's birthday) and how appropriate it is to me that his birthday falls during Lent.  Lent to me is a heavy time.  For me, it is a time to prepare for Jesus' death and as a mother who has experienced two of her own sons' deaths I can really relate to the time and to Mary's loss as Jesus' mother.  Now, more than ever, I feel that heaviness in my heart and my bones.  And apparently I will for at least the next five years.  You see, I looked at the calendars through 2018 and Eli's birthday during each of those years, and likely for all of the following years, will always fall during Lent.

Giving up chocolate or other sweets, even television, seems so silly in light of what I gave up just two years ago.  Lent has now become an acute observance of mourning for me and there is no earthly deprivation that could hold a candle to the deprivation of my sons that I live with every day.  I would live that one day of Eli's life just one day every year if I could.

Untangling the Knots

I feel that I am just navigating a complicated web of knots lately much like an unraveled ball of yarn.  Some strings are loose and easy and others have inexplicably wound themselves into the tightest of knots.

I think it has a lot to do with number four.  More than ever, watching her grow up and move through the babyhood stages has made it crystal clear what I am missing and what I will always be missing.  When I went through this stage with number one I was so overjoyed just to have a living baby it really didn't matter as much whether she was a boy or girl and though her babyhood was bittersweet it was also elating in the celebrations of each little milestone.  With number four I know what's coming and I know what has passed.  The surprises aren't what they are with a first living child.  There is still joy and celebration but there is also a level of comfort and knowledge.  I've done this three times before so the little things don't send me into a tailspin of doubt and worry like they used to.  There's an ease to raising a fourth child and that ease has paved the way for my mind to wander down a different path.  A path on which I have at least one little boy, though hopefully both, in my life.

It probably doesn't help that Eli's birthday is just two months away.  Last year at this time I was pregnant and all of my focus went into getting this little girl here safe and sound.  I focused on a little person wriggling in my belly.  She didn't have a face, a personality, a smile, a laugh or a cry.  I couldn't make her happy or scare her or soothe her bad times away.  This year that is most of what I find myself doing and it's just too much sometimes.  I wonder how things will feel once his birthday is passed.  As my four year old says, "One, two, three, wait and see".

My Christmas Family

So I've been feeling this sadness settling in like it does each year right around this time since our first Christmas without Wyatt in 2003.  My mood and temperament noticeably dip so I found myself trying to explain it to my husband last night.  It took alot of nonsensical descriptions before these words came out.

Christmas makes me sad because it's about family and that only reminds me of how incomplete my family is and will always be.  It is the one time of year when my family never seems so incomplete.    I can't say it any better than that.  The boys' birthdays come and go and those days are about them individually and how much I miss each of them.  But Christmas.  Christmas is the time when their presence in our family is so obviously missing to me.  Everyone else in our family (parents and siblings) have all of their children.  I am missing two and I just don't know how not to miss them.  The heart of Christmas, truly the meaning of Christmas is family.  Christmas is the celebration of Christ's birth and the creation of the Holy Family.  It is also the creation of God's own family as he welcomed his only son into this world.  So, you see, any which way you look at it, it's family.  The one thing I value above all else.  My blessed and blessedly incomplete family.

He tried but had no answers.  There are none that I have found over the last ten years since Wyatt's birth.  I don't know that Christmas will ever be the same for me.  It is a very conscious effort to recognize and appreciate the joy that is going on all around me each and every holiday season.  Today I find myself in need of a silent night to spend in quiet reflection and sorrow to make more room for joy from the world tomorrow.