Monday, October 25, 2010

My grief is like a tidal wave...

Triggers, triggers everywhere.

Reminders of all you went through.
Reminders of all we went through.

Tonight it was a movie. I didn't know it was that kind of movie.
It knocked me through a loop.

Just know baby girl that I am missing you so much. And I am so sorry I couldn't save you. And that I wish I could make peace with all that needs to be made peace with, because I know you would want that for me, but I have not yet found a way.

I found this poem tonight. It made me think of this journey through life without you, though to be honest I feel my grief is more of a tidal wave than a river, stealing my bearings when it comes, but a river is a beautiful image nonetheless.

Missing you always.

My grief is like a river, 
I have to let it flow, 
But I myself determine, 
Just where the banks will go.
Some days the current takes me 
In waves of guilt and pain
But there are always quiet pools 
Where I can rest again.
I crash on rocks of anger 
My faith seems faint indeed 
But there are other swimmers 
Who know just what I need.
And loving hands to hold me 
When the waters are too swift 
And someone kind to listen 
When I just seem to drift
Grief's river is a process 
Of relinquishing the past 
By swimming in Hope's channels 
I'll reach the shore at last

~Cynthia G. Kelley~

Wednesday, October 20, 2010

On Bed Rest, Frustration, And Searching For Hope.

Yesterday I woke up feeling a little overwhelmed. I am ashamed to admit it, because in comparison to the other hurdles of these past few years what's a little bed rest right? That being said, it's like all of my frustrations hit me at once.

I am approaching 7 weeks of bed rest. I thought last week marked 7 weeks, and then counted again to find that, no, I had somehow lost a week in there somewhere, and though the actual number of hours/days/weeks on bed rest shouldn't matter all that much, realizing I had miscounted felt like I had been duped.

I know that I have countless (up to 20 more) weeks of bed rest ahead of me, and that's okay, I am willing to do whatever it takes to get these snowflakes here and healthy, but for some reason yesterday, among all that conviction, I felt the sudden urge to get up and run away from all of this.

Well... to be fair I didn't really want to run away. What I really wanted to do was hop out of bed and clean my house. 

Hubs has been working loooong hours this week (read 6:30AM to 11:30PM long with a few breaks in there to make me dinner etc.) and spent all last weekend doing construction on our house, so to say this place is a disaster area is quite the understatement. There are dishes in the sink that I want to go do. Floors I want to mop and vaccuum. A bored silly little black lab that I would love to take to run and romp and play in the leaves. 

There are so many things I feel up to doing, but I can't.

I think if I felt more like crap, bed rest would be somehow easier to swallow, but barring some achey/crampy feelings, and the unrelenting morning sickness that I have somehow grown accustomed to, I don't feel unwell generally (although the last few days have hit me especially hard and I am wondering if I somehow a- picked up a stomach bug even though I don't go out anywhere, and b- am going to eventually get a bed sore because my rear and hips are really, really tender from all this laying around.)

Yesterday we got some really nice news, and though I can't go into it here, I was excited to talk about it with hubs when he got home. A few minutes before I expected him, the phone rang. 

It was Viacord. 

For those who don't know, Viacord is a cord blood banking service. This is how our conversation went.

"If you bank your child's cord blood," the rep was telling me on the phone, "and they need stem cells, they will always have a perfect match available to them." 
"Yes," I said, "unless the child is born with leukemia in which their stem cells don't do them any good."
"Well," he continued, "babies aren't born with leukemia."
"My daughter was."
"Born with it?!"
"I've never heard of such a thing."
"Well I guess I am that lucky."

He proceeded to give me the rest of his spiel, and with every word that he spoke about cord blood and stem cells and leukemia, the reality of our situation sunk in deeper and deeper. We are not a "normal" expecting couple. We are a seemingly healthy couple who had a child born with leukemia and no one seems to be able to tell us why. 

I hung up the phone and it all hit me - an onslaught of worries and fears about leukemia that I have somehow kept at bay these last 19 weeks with the exception of a few restless, mind racing nights. Up until now, I haven't allowed myself to go there. I have lived in this fantasy world of "that could never happen to us again," and then this call came in and I was forced to go "there", to that terrifying place, and I hated it. 

When hubs came home he did not find his happy wife ready to talk about our good news, but instead a a petrified mess blurting out in tears that maybe I was a fool. That maybe God tried to send me a clear message by destroying my tubes and I was too cocky and too proud to listen. That maybe He was also  making this pregnancy so difficult for a reason, and I was just too damn thick to understand.

Hubs listened patiently, in his normal agnostic-married-to-a-guilt-ridden-catholic sort of way of not understanding my relationship with/fear of God, yet totally respecting my right to my feelings, and then he told me he didn't think that was the case, and that it's okay to believe the snowflakes will come here healthy, and happy, and whole. He told me this in a way that felt somehow rehearsed, and showed me that beneath his tough exterior he was scared too, and when he left a few minutes later to start dinner, I felt like crap for having gone "there" with him, because I know he, too, tries so hard to push those fears from his mind.  

So there I was - not feeling very well, sad, overwhelmed, frustrated by the belief that I can't be like the seemingly 99.99% of this world who say to themselves, "let's have babies," and nine happy months later are blessed with crying pooping wonderfully healthy little children, and then the anger rolled in, and the depression and anxiety, and I re-traced every step I have taken on this struggle paved road to motherhood and sunk deeper into my hole. 

Basically I was having a pity party.

An out and out, true blue, feel sorry for myself and nothing and no one are going to get me out of it pity party, and that's when I saw it - a message posted by my amazing friend Lisette to her status. 

It read:
"Don't let the sadness of your past and the fear of your future ruin the happiness of your present." 

And as I read those words, something amazing happened - they started to feel true. So I read them again, aloud, over and over. I read them until they pushed away the clouds of self doubt, and fear, and anxiety, and though I had been shaken to my core by my frustrations of the day, and the conversation with Viacord, and these last two years- I allowed them to sink it. 

Yes I lost my child to leukemia and no one knows why.
Yes I am scared.
Yes I don't know what the future brings.

But right here, right now, I am pregnant, and these snowflakes are growing and doing well, and that is a blessing not to be overlooked. 

Yes it is okay for me to allow myself to feel hopeful once again.

**This Friday is our big anatomy scan. If you would be so kind, please send my snowflakes your good thoughts/prayers/positive energy/happy karma etc. etc. 

Thursday, October 14, 2010

Reflecting On My Journey Through Infertility

Last Spring, I stumbled upon a video about infertility entitled "What IF?"

At the time when I first saw it, we were knee deep in grief over Peyton and had been trying desperately for nearly 9 months, without success, to achieve another pregnancy. The previous December, I had gotten the news that an infection from my c-section had left both of my tubes scarred beyond any usefulness, and that my only option, and not a guaranteed option at that, was IVF.

I was in shock.

For over a year after Peyton's birth I had complained to my doctor that I wasn't ovulating or menstruating. When she gave us the green light to try again last June, and I failed to conceive, I knew something was wrong. Through it all, my OB explained my infertility away as the result of me "grieving too hard." "If you don't get over this," she would tell me, "you will never get pregnant."

Lying alone and half naked on a steel table at the hospital, my unresponsive tubes glaring down at me from a monitor overhead, a sympathetic doctor delivered to me the news that I would never again be able to conceive on my own. "There is no justice in this world," she told me, taking a deep breath, and as she did, any last shred of hope that I had held onto for a family of my own, flowed out of my eyes and down my cheeks.

In that moment: grief stricken and infertile - I felt my life was over.

Discovering that I had lost my fertility after losing my only child undid several months of healing, and brought a million questions to my mind. Hard questions. Painful questions.

Was I still a woman if I couldn't conceive?
Was I still a mother if my only child was dead?
Was I still a Catholic if I was willing to pursue IVF when the church is so strongly against it?
Was I still a wife if I couldn't give my husband a family?
Were we still a couple if making love could never create a life?

For someone who just a year and a half prior had been a confident 28 year old, with a promising career, thriving social life, happy marriage, and first child on the way - the downward spiral of those 18 months took me to the darkest depths of my life. Everything I believed would be suddenly felt like a lie, and the truths that I was facing were hard to swallow:

I had lost our child.
I had lost our fertility.
I had lost our hopes.

That's not a typo. I HAD LOST these things, or at least that's how I felt. In my mind, the blame for all of our losses and failures, were mine and mine alone.

I don't know why I always viewed hubs in a different light than myself. In many ways, I saw him as a victim in all this. He had married me and I had failed to hold up my end of the bargain.

Maybe it was because our IF issues were with my body?
Maybe it was because when he proposed he told me he wanted to "grow old together and have lots and lots of children," and the realization I couldn't give him that made me pity him for staying with me?
Maybe it was because I was Peyton's mother, and our miscarried baby's mother, and mothers always blame themselves.

All I know is that when I stumbled across this video, it struck a deep chord with me. I had, for months, been asking myself many of the same questions posed in the video.

What IF I lost my sense of self to my infertility?
What IF I lost my sexiness to infertility?
What IF I lost my spouse to infertility?

What IF?
What IF?
What IF?

Today I was looking around on the internet, and once again came across this video. As I did, the tears came, but they were different somehow. Today I cried tears of gratitude. Though I had felt so sure just six months ago that infertility would beat me, today I realized that I have beaten infertility.

It took over a year of trying, months of hormone injections, the pain of twisting an ovary, Ovarian Hyper Stimulation Syndrome, 4 weeks of bed rest for the Ovarian Hyper Stimulation Syndrome, the heartbreak of learning our first cycle had failed, many, many, MANY hours of therapy to deal with the above mentioned feelings, facing a second cycle after failing the first with no explanation, a bleed that has kept me on bed rest since week 12 and in all likelihood will continue to keep me bed ridden for the next 20 or so weeks, tens of thousands of dollars, countless tears, fears and anxieties, and all the emotions that go into having a high risk pregnancy after loss, but I am here - pregnant - full of hope - and very grateful.

I guess that is why I am writing this post. To let others on their own infertility journey know that I get it. I have been there, at the bottom, the very bottom. I have questioned every aspect of myself, my worth, and my life. I have wondered if joy would ever again return to my heart. If I could ever give my husband a family. If I could ever survive this, and the answer is yes.

There is always a chance.

Sometimes we have to wrestle with these big questions to find our way, but in the end, we can all get there. For us, a couple who lost their fertility to birthing a dying child, our chance came with IVF. For others it comes with surrogacy, or IUI. Medications, or adoption.

I don't know what the future holds for us, but I do know that it is looking brighter once again, and that is something that once felt impossible.

I guess that what I am trying to say is that it is only when we open our eyes and our minds to all of the possibilities in front of us, even those that we fear or resent or are unsure of, that we can find pathways to hope.

Here is the video that had such an impact on me. I am sure for those of you haven't seen it before, or are viewing it a second time, you will feel it resonates at some level with you too. (Be sure to pause the music player in the right column of this blog to hear the video.)

Tuesday, October 12, 2010

These pictures are worth a thousand words...

As you all know, I am never short on words, 
though I thought today I would try a little change of pace.

Warning - this post contains belly shots and ultrasounds. 
I am putting a little space here 
for anyone dealing with loss/infertility who would rather not see.
(Keep the faith, I have been there too.)


Baby A who we are pretty darn sure is a boy.

Baby B is too modest for us to know for sure, 
but we think B is a girl.

I love this one!

 The snowflakes are growing...
and so am I!

Feeling very blessed - 
though a little makeup in this picture would have done a world of good :)

Thursday, October 7, 2010

Walking The Line

Thank you so much to all who reached out with support on the 2nd as we dealt with the anniversary of Peyton's passing. The weekend was a hard one for me, mostly because I couldn't get out to the cemetery and be with her, and thinking of my little baby laying neglected up on that hill since her birthday a month ago just breaks my heart. I learned earlier this week though of a visit some friends had made, unbeknownst to me, to leave fresh flowers on her stone, and thinking of them taking the time to honor her that way really did my heart some good.

The weekend itself was full of ups and downs. There were moments where I felt fine, laughing and getting along, and then others where grief hit me like a ton of bricks and the loss of her felt so new, and raw, and permanent, that I struggled for my breath the way I did last year, and the year before. I am coming to terms with the fact that the Fall will always feel this way for me.

At one point on Sunday I went back to the blog that my sister had authored to keep friends and family informed during Peyton's life (and at the news of her death), and re-read the comments that had been left there for us. They were desperate and encouraging, hopeful and then grief stricken. After that I went to the funeral home's site and re-read the messages from there as well. I don't know why I did that to myself, it was torture reading words left for a poor couple upon hearing the news that they had lost their baby, and knowing that poor couple was us made it even harder to take. I can't explain why I put myself through that, I just felt compelled to do it, and as I read the sympathies expressed there by family, friends, and strangers alike, I couldn't help but to feel sorry for her, and for us, and to just feel so robbed, robbed, robbed. 

I guess there is a reason I have let those messages go unopened for the better part of two years. 

Sitting in bed, reading and crying (hubs was out back doing some construction) I started feeling guilty for my grief, that in some way it was doing a disservice to the joy I feel over my little snowflakes. It's a complicated feeling, and hard to explain, but I find myself struggling for footing in this balancing act between expectant mother and grieving mother. 

I am hopeful - I am heartbroken.
I am overjoyed- I am full of sorrow.
I am planning for a future of what ifs - I am mourning for a life that never can be.

I rubbed my belly, and apologized to the snowflakes for whatever they might be feeling of my tears, and told them about Peyton, their big sister who they will never meet in this life. I explained that though she is not here, and they are,  I still love her as I do them, and that sometimes, even as we  celebrate in joy the blessings of our lives, there will come the time to shed tears for the little girl, our first little girl, who was taken too quickly and too permanently from all of our lives. It might sound crazy (as I often do here) but for some reason I got the feeling that they understood, and once that feeling had washed over me - my tears halted and I was at peace. 

This past Tuesday I went in for a higher level ultrasound of the snowflakes. I was under the impression that it was to be my first anatomy scan, but I was wrong, that comes a few weeks down the road. At this ultrasound they did measurements to make sure the snowflakes are growing appropriately, and got some good looks and pictures of my SCH (uterine blood clot). This exam brought with it lots of good news, and some not so great news. 

The good news is that both of my little snowflakes are growing and growing and growing! The average baby at 17 weeks is 5 oz, and despite the fact that I have struggled to gain weight in this pregnancy because of unrelenting morning sickness, pregnancy nose, and nauseating food aversions, I am happy to report that baby A is weighing in at a whopping 9 oz! while baby B is just about where (she) should be at 7 oz. 

All of the measurements the ultrasound tech and Perinatologist took, showed these babies to be right in the appropriate ranges, though it has become fairly clear on ultrasound that Baby A is our future NBA star, with long legs and big old feet like his daddy.

Always one for keeping up the mystery, Baby B decided to hang out in the shadows of my belly button a bit longer, keeping (her) parts hidden from clear view. The docs have told me that they really think A is a boy, and B is a girl, but like any modest little girl should, when they went to get a good look, B covered up with her hands (what a little lady haha) so a definitive determination of B's gender has not been made. The Peri assured us that at the anatomy scan, we will definitely find out for sure. 

The news about my SCH was pretty good. I had a few more brown bleeds since the last time I blogged about it, and the SCH that they have been watching seems to be down to about 6.5cm which is great news (it was 12.5cm at its largest.)

The not so wonderful news is that they think I may have developed a second SCH measuring 4cmx4cm, and this one was not as far from the babies as the first so that made us sort of say ugh. The tech told us they weren't absolutely sure that it was another SCH they were seeing, explaining that it could possibly be a blood vessel, so only time will tell.

My placenta previa also seems to be doing "okay." When I am having a contraction, I have full placenta previa, but when I am not contracting, Baby A moves up a little bit and makes some room for the cervix. I asked the Peri if she thought it would correct itself, and she said that while there is still a chance that it might, at this point I am pretty far along for that to happen, so that, too, may be something they have to watch for the remainder.

Overall I have to say that I am feeling pretty good, though I am officially the size of a house, okay maybe not a whole house, but a condo at least. I am still throwing up just about daily,  but not nearly as much - and though I hear talk about some mysterious energy boost that is supposed to be here in the second tri, the rain we have been having here in the northeast these last few weeks has kept that from happening. 

I guess that if there is one good thing to be said as I approach my now 6th week of bed rest (I can't believe it, I mean I can because it is boring and redundant and I have lived it every day, but I can't believe it still) is that there is a lot of free time to partake in some good naps.

I was going to share some ultrasound pics with you today, but hubs still needs to get them scanned for me, and we are overdue for a belly shot, so that will come soon too. 

Instead I thought I would share these lovely goodies that I have been so lucky to receive over these last few weeks, for which I am truly, TRULY, grateful.

This lovely painting actually came more than a few weeks ago, isn't it beautiful? It is a watercolored butterfly sent to me from my beautiful friend Jill at Footprints on Our Hearts!

Jill was also kind enough to send me this care package to get me through bed rest, as well as some twin books which unfortunately I don't have a pic of ...

And for Peyton's birthday, a lovely blog reader named Denise H. sent me the most perfect butterfly chimes... aren't they amazing?  They hang at our front porch now, and make the most beautiful wind-song when a soft breeze blows.

Well I guess that's all I have to report... please continue to keep my sweet little snowflakes in your prayers, that they continue to grow, and thrive, and come into this world healthy and strong. 

Friday, October 1, 2010

Two Years Ago Today - In Flashbacks

Two years ago today, the fungal infection from the chemo had spread, and you, my perfect pink little Peyton, looked bruised and battered, tired and old.

Two years ago today, Daddy held you in his arms calling you his "Little Sugie Sugie", and we joked through the tears about who had lost more hair over the previous month, Daddy to stress, or you to chemo.

Two years ago today, I saw a group of doctors in the hallway. And then your social worker Mary appeared looking concerned, and I knew bad news was to come.

Two years ago today, more white coats than I could count shuffled into your room. They told us about a plum sized mass that they found in your brain, and I wondered how that could be possible when you showed no signs outwardly.

Two years ago today, you stayed awake with us for hours, staring deeply into our eyes. This was the greatest gift you ever gave us - these moments of bonding with us one last time.

Two years ago today, I received a prayer shawl with a prayer to Our Lady of Mt. Carmel in it from my boss. The note said it was "never known to fail," and I wrapped you in the shawl, praying and rocking and crying and begging in a way that was desperate and pleading and manic all at once.

Two years ago today, the look in your eyes told us not to worry. We believed in you, our little prize fighter. That you would pull through, and be that 1%.

Two years ago today, you stared past me at the wall, to an area where a red painting from your cousin Emily was hanging just over my shoulder.

Two years ago today, the neurosurgeon told us not to worry. He assured us the mass was not affecting anything, and that in two days, on that Friday, it would be easily removed.

Two years ago today, we felt hope and promise about your infection. The surgery the day before had been successful, or so they told us. It still makes me ill knowing what chemo did to you.

Two years ago today, you tried one last time to root. And I told nurse J that you were hungry, and she in turn broke my heart. She said you didn't know what you wanted. That you were only rooting because it came naturally, and that feeding you was impossible because of the blackness that had spread to the roof of your mouth. I am so sorry baby girl. I had no idea it was to be our last chance together in this life for that.

Two years ago today, I still held out hope for your future. I continued to pump and store milk, believing my antibodies delivered through your feeding tube would help you get well and be strong.

Two years ago today, you had come through your first white blood cell transplant with flying colors. We had been up with you all night the night before, hadn't changed in days, and were exhausted.

Two years ago today, the greatest regret of my entire life. At the nurse's urging and reassurance we left you at the hospital around 10PM, to rest up for the two long days of surgery you had scheduled ahead.

Two years ago today, your favorite Nurse Katie and the doctor on call spent all night with you having a "girl's party." I learned about this weeks later, in a handwritten Papyrus condolence card.

Two years ago today, your last night on earth before dying. I had no idea what I would have to do the next day, or how even years later, I would still be struggling to live with it.

Two years ago today, I didn't know yet what it was to hold my dead child. I didn't know how small you would look in your casket, or how permanent your absence from our lives would be.

Two years ago today, we listened to John Legend on the ride home. He asked "where did my baby go," the cruelness of this foreshadow still unknown to us.

Two years ago today, I wasn't that woman who cries out for you on a hilltop. I had never clutched the earth wanting to dig and get my child back, or cursed God for what he had done.

Two years ago today, I went home to rest still believing - that God and prayers and miracles could save you, holding onto my last bit of innocence.

Two years ago today, I still roamed this earth complete. I have since learned to walk on once again, but it is with the limp and struggle of an amputee, adjusting to a new awkward stride while never again feeling fully whole.

Someday it will be five years, and ten, and then fifty, and even then every moment of your life, every decision, every everything, will remain as clear in my mind, as burned into the core of my being, as it was when it happened two years ago. 

I miss you baby girl. I am so sorry I didn't see it coming. If I could go back I wouldn't have put you down for even a second.

If I had just seen what was coming, two years ago today.