Friday, October 31, 2008

Happy Birthday, Noah.

It's hard to believe, six years ago today our son passed on. In so many ways, it seems so long ago, but yet the sting feels just as sharp, the hurt just as poignant on days like this.

It's so hard having to juggle the present and the past. I have two healthy, beautiful girls whom are so excited and happy about Halloween tonight. There is a state of general madness around my home right now: the rush of carving pumpkins, the doning of costumes, the applicaiton of makeup, the snap of countless pictures, the haste to get it all done and have them fed before hurrying out the door tonight, not to mention hosting a block party of sorts in our drive once the neighborhood trick or treating hours end or the fact Hadleigh has to run off to be part of a haunted house around the corner and I need to go to the grocery store and I need to do laundry and dishes and workout and take a shower. The list seems endless...

And in the midst of that madness, I need the world to slow down long enough for me to take a breath, to pause so that I may remember my precious son and this special day.

Late this afternoon or early eve, we plan to send up a balloon again, like we've done every year since he died. It's alittle harder this year than last because Olivia asks so many questions. She's getting older and so understands a bit more, she understands the concept of sisters and brothers, but Heaven is a bit more difficult to grasp. Hadleigh, of course, if eager to talk about her little sister and brother and readily tells Olivia this morning that it was Noah's birthday.

Ah well, I just have to keep reminding myself of all the good in my life and the many blessings I do have. As sad as I might be about the loss of our dear Noah, life does go on and I must keep moving forward....

One step at a time.

So to my beautiful son up in Heaven,

Happy Birthday Noah! We love you and miss you, but know one day, we will meet again. Until then, sweet boy, rest well. I hope you are playing with your little sis Christina and having lots of fun. Maybe even throwing ball and playing chase with Shelby, she's such a sweet doggie. Thinking of you now and always.

Much love,

Tuesday, October 28, 2008

Staying on track

Sorry I haven't posted in a little bit, had other things on my mind. I recently got on Facebook and having friends from college and highschool find me again has been fun, but distracting.

I guess the distraction is good though, in a way. With Noah's 6th year anniversary coming up on Friday, being a little distracted isn't a bad thing. We are planning to do the balloon like we usually do. So hard to believe...six years. Wow, where has the time gone.

Also having some trouble lately in perspectives. That's an odd statement I guess. It's just...lately I've learned more about other people, friends, who have had their own brands of tragedy in thier lives and I am left feeling just a little depressed. Why does so much crap have to happen to so many people? Found out one of my college friends lost a baby she was carrying at 5 months, another just lost her husband and father of her children to ALS this week, I think of my friend John who was once so like Derek and me but after a horrible car accident several years back, he's confined to a wheel chair, had one leg amputated, fought so many battles with addiction and everything else. I hear about the friend of my mother who has cancer and only months to live. I hear all these things and I feel so badly that so many people have to suffer like this. I guess I felt better when I thought I was one of a few that had such hardships. It's a little disheartening to find there are far more suffering than I ever imagined.

Anyway, as my motto says, trying to take it day by day, step by step. I am trying to find the good and positive and wonderful in each day. Trying to remember to count my blessings and be thankful for what I do have and for what my friends who have been or are still suffering have. There is so much goodness in the world, so many things that are right, we must not lose focus of them and let the dark take hold. Rejoice in the small moments, connections with old friends, bright clear fall days, the beauty of the leaves as they start to change colors on the trees, the smile of a loved one, a hug, a random act of kindness from a stranger, our own health, the fact we have roofs over our heads and food on the table and jobs. There is much to be thankful for....just trying, trying to keep that as my focus.

Friday, October 17, 2008

Updating things

I hope you enjoy the music I am adding. The first song in particular, To where you are, by Josh Groban, really speaks to me. I played this song again and again and again just after losing Noah. You can even sort of see it's influence in the letter I wrote to him (posted here, but also read at his memorial.)

Here are the lyrics of this special song...I change only the slightlest litte bit when I apply it to my angels...simply changed forever love to loved.

"To Where You Are" - Josh Groban

Who can say for certain
Maybe you're still here
I feel you all around me
Your memory, so clear

Deep in the stillness
I can hear you speak
You're still an inspiration
Can it be (?)
That you are mine
Forever love
And you are watching over me from up above
Fly me up to where you are

Beyond the distant star
I wish upon tonight
To see you smile
If only for awhile to know you're there
A breath away's not far
To where you are

Are you gently sleeping
Here inside my dream
And isn't faith believing
All power can't be seen

As my heart holds you
Just one beat away
I cherish all you gave me everyday
'Cause you are my
Forever love
Watching me from up above
And I believe
That angels breathe
And that love will live on and never leave

Fly me up
To where you are
Beyond the distant star
I wish upon tonight
To see you smile
If only for awhile
To know you're there
A breath away's not far
To where you are
I know you're there

A breath away's not far
To where you are

Anyway, please bear with me as I try to add some sounds and maybe rearrange things visually a bit. (Special thanks to Beth Tanner for helping me with the sounds.)

In the meantime, I hope the day is a peaceful, hopeful one for each and every one of you who wanders by my little site. Thanks for coming by. Blessings to you all.

Thursday, October 16, 2008

Out of the gloom, a ray of hope.

Prior to losing Noah, I'd always enjoyed writing and had been told by many that I had some talent at it, that I had an ability to make people feel and see and smell the places I wrote about, to really help them connect with whatever it was I was writing. And so, when I lost Noah, I knew I had to write something. I knew almost instantly that I had to write something for him, a gift from my heart as surely as he had been a gift from God.

Writing the letter I made for Noah was a hard and painful thing, but also cathartic. As much as I cried writing it, it also brought me some measure of peace, knowing I was truly giving of myself, doing the most for him that I knew how. I never realized how far reaching that impact would be.

Back when I lost Noah, nearly some 6 years ago now, there wasn't anything like a blog out there in cyberspace. There were bulletin boards and websites with comments and articles, but that's about it. I did my research and found a loss group called SHARE. I think my genetic counselors might have even mentioned them, or my OB....I can't quite recall now, but I do believe someone pointed me in their direction. I found them online but was saddened to learn they did not yet have a chapter in Richmond. So what did I do? I did the next best thing and got involved online. I started posting to some of the message boards they had and in doing so, stumbled upon an unexpected blessing. I could help people.

Purely for me, I had posted the letter I wrote for Noah. I just wanted a record of it somewhere, a testament to my precious baby. And then out of the blue, I started getting emails and comments from folks who had read it, all people who had suffered a loss of one kind of another. They thanked me through their tears, and sighs and pauses, telling me how much my words had meant to them, how much it touched them. I had folks thank me and say that they had read the letter at their own children's funerals or memorials, some had placed copies of my letter into their own memory boxes, others emailed it to their family and friends and told them to read it, that this was how they were feeling but didn't know how to explain. And with every thank you I received, my heart felt lighter and happier. Sure I was still devastated with the loss of my son, but it felt so good to be able to help others through their own dark and terrible times. It gave me such pride and joy and made me realize yet again what a blessing having had and lost Noah was. Through him, I was able to touch countless others and right then I knew someday I'd have to write about the whole experience. I knew somewhere deep down, that part of my mission was to help others through the pressing darkness of their own losses.

And the blessings came, whenever I happened to talk about it, I found I was reaching people, affecting them in ways I never knew possible. And the more people I helped, the better I felt.

I had a very humbling experience yesterday, one more blessing brought back around my way at an unexpected time. I was talking to my mother on the telephone. I'd only recently told her about this blog, but she knew of some other women I'd been helping recently through church and some other things, women going through their own losses. She said she'd heard something the other day on the radio or TV about the heroes in your life and how so many times we never tell them how we feel. I could hear her voice faltering on the phone as she almost shyly told me that I was her hero. Even just thinking about it now brings tears to my eyes. Never in my life had I imagined to hear I was any one's hero, much less my mother's. I didn't know what to say. I mumbled some sort of thank you and that I appreciated it, that I thought it was really sweet, but I was honestly at a loss of words. You know, like so many others, I am more content giving than receiving compliments and as adeptly as my words can flow from my fingers while I am writing, I find I am far less graceful in person and my tongue often trips me up.

So I listened quietly to my mother tell me that I was her hero. I was her hero for how I dealt with the loss of my children, for how I managed to hold everyone together during that horrible time and how I have been able to put aside my pain, even dwell in it so that I might help others.

Thank you, Mom. It meant more than words can say. You are a truly special person and I am thankful to have you in my life. I love you.

Monday, October 13, 2008

Monday, October 13th

I just wanted to take a moment to say thank you to all those who've passed by my little corner of the online world and taken the time to say hello or leave a comment. I truly appreciate them. Feel free to comment or email me at anytime. I am always glad to talk.

On to other things.....

POST LOSS doctors visits:

I have one bit of advice. Well, maybe a couple. But first and foremost, going back to the OB after having experienced a loss is an overwhelming thing. At least it was for me. During those days and first weeks post loss, the slightest thing would set me off crying and having to walk into a waiting room full of pregnant women was no picnic. I was blessed to have a great OB and nurses who as soon as they knew I was there and checked in, they pulled me into the back halls to sit and wait for my room to open up rather than have to sit out there and be surrounded by all those happy pregnant women.

Well, they weren't all pregnant, but it sort of seemed that way. When it's a sensitive issue, that seems to be all you see. I highly recommend making your appointments for first thing in the morning or just after lunch when the office opens again. Waiting around, even in back halls, is not an easy thing. Try to spare yourself that anguish and limit the wait if you can.

I also had a really hard time seeing all these other pregnant women. It actually made me mad sometimes when I saw them smiling or laughing or holding their plump bellies as the precious child within moved. Seeing an obviously new parents-to-be couple nearly set me over the edge. They were all happy and smiles, clearly excited. She wasn't showing the slightest bit. Obviously it was early on. They were beside themselves, so happy and expectant and excited and all I wanted to do was throttle them. I wanted to march right over there and shake some sense into them, yelling at them to not be happy, to worry, to worry all the time! Didn't they know how it could all go so terribly wrong?!?!

And then one day, while pregnant again and visiting my perinatal specialist for one of those early fetal scans we had to do, I changed my mind. Now granted...folks coming here were often already worried, for one reason or another. You could see it on their faces, sometimes in the tears freely falling down as they left in a hurry. And I suddenly realized. I'd been judging everyone else unfairly. How do I know that this happy pregnant woman across the way hasn't had a loss before this one? For all I knew, maybe she'd lost five and this one, this one was finally going to be ok.

The point is, I didn't know and it was unfair of me to look at them so sternly. And even those who were pregnant for the first time...they should be happy and excited. Looking back that is one thing I was blessed to have with my first pregnancy. I had no clue. Everything was fine all along. I was blissfully ignorant. I had no idea of all the horrible things that could go wrong. Oh sure, you worried about the normal battery of tests, the Downs, the Spinal Bifeda, the Glucose test, the AFPs....but as some of us out there know, that is only like the pin-point tip of an iceberg. I am glad I didn't know with my first. I worried alot as it was, like any mother to be does. At least I had one pregnancy (and half of a second) without the gloom and doom constantly hanging over my head.

So again, when looking at the pregnant woman you run into at the doctor's office, or in a parking lot, or in the crowded aisle of a store...remember...when that sudden anger flairs its ugly head...or jealousy, remember we don't know anything about them. For all we know they've tried for years and years and had one loss or setback after another before getting to this hopefully happy point. We don't know. We've not been in their shoes. Give them space if you need to, and perhaps if you can manage, even say a little prayer for their baby, hoping that all is well and one more sister in this world won't have to know the pain and suffering we have.

People do lots of different things to remember the precious children and babies they've lost. We do balloons.

Every year on the anniversary of their birth and death, we buy a balloon and write all over it with a permanent marker. We send up our messages of how much we miss them and Happy Birthday's and I love yous and all of that. My oldest daughter used to just draw smiley faces at first, but now she writes more. We don't direct or make her do anything. She can do as much or as little as she wants. My four year old is getting old enough now to understand something is going on, but she doesn't really get it yet. But that's ok. We all hold onto the ribbon at the same time and after one last round or goodbyes, we love yous, we miss yous (silent or otherwise) we let it go and watch the balloon sail upwards, up and up....floating off to Heaven to be caught in the hands of our precious ones so the message can be received. I know they see it. I like to imagine them there up in Heaven, all smiles and happy, running around with their decorated balloons.

At some point in time, I'd like to plant some sort of memorial garden too, but I am hesitant to do that just yet. I don't think I'd be very happy if we planted a garden (ie trees and flowers and shrubs) and then had to move. With my husband's job we sometimes move around and I know I would be very upset to leave something like that behind. I know I could do something in pots, but I have in mind something bigger, grander. Maybe one day it will all work out, but for now the balloons work and leave me feeling like I've done something special for them each year.

Sunday, October 12, 2008

Christina's Lullaby - From Mommy

Christina's Lullaby

Sweet and warm comes the whisper of the wind through the trees at night.
Bending, stretching, twisting, the verdant leaves glisten in shadowy play, quietly reflecting the silvery moon above.

Beneath lay a cradle, rocking gently in the heavenly breeze, not a kiss of coolness to touch upon the satiny cheek of the sleeping babe within.
She is perfect in her slumber as I look upon her.

Soft little pink lips and long lashes draping artfully down against those precious cheeks of softest ivory.

A blanket of white lovingly tucked in around her while the softly curving fingers of one tiny hand lay above.

Back and forth the cradle endlessly moves, rocking the precious babe within while the music of the night drifts all around.

She is safe, secure, sleeping so soundly, so peacefully.

But oh how I long to reach out and take her from that beautiful place, to take her into my arms and hold her once more, to feel that precious little girl in my arms, to give her all the love I can.

But alas, my arms are not so long.

I can not reach her where she is.

I can not hold my precious daughter as I might like, but instead I must give her over into the angels' care, letting them tend her crib through the night, keeping her safe as is their right.

Rest well my beautiful daughter and sleep.

May your dreams be filled with wonder and joy and may you know nothing but love and laughter until we meet again.

Know always that my arms are reaching, know always that you are in my heart and I will ache with the emptiness that only your presence can fill.

I love you, my sweet daughter.

We will meet again.
Hush-a-bye and sleep, my precious angel
Sleep, sleep while your loving brother tends your keep.
Angels are at your beck and call
My precious daughter, they shall never let you fall.
Enfolded in the Lord's tender care are you
A world full of wonder and love are what He'll show you.
Hush-a-bye and sleep, my precious angel
Sleep, sleep while your big brother tends your keep.
Mother, Daddy and Hadleigh love you so very much
Even if we are not there to show you such.
Hush-a-bye and sleep, my precious angel
Sleep, sleep while your precious brother tends your keep.
Safe and secure I'll hold you in my heart
Always and forever of my world you'll be a part.

The Bassient

A poem from my sister, written for Christina.

The Bassinet
By Debbie Cosentino

I entered the room anxious and nervous for myself, and my friends.
But what surprised me the most, was the bassinet.

There it sat, empty and waiting for the arrival of Christina Ann. I knew the bassinet was to hold the hopes and dreams for the future. Instead, the bassinet was but a brief holding spot, for an angel on her way to heaven. A stopping point, along her all but too brief journey.
The bassinet sits empty again. Our hearts feel empty, missing all we hoped for, all the dreams we dreamed. Who would have known how important that bassinet was? We do.
In memory of Christina Ann, and in honor of her remarkable parents.

Something my husband wrote for Christina

Derek wrote this and read it at her memorial. I think it's beautiful.

Thank you all for being here in such a difficult and trying time. I would like to spend a moment speaking with you all about the early hours of August 14, 2003. The moment I want to talk about wasn't really a quiet moment. The lights in Labor and Delivery Room 12 were low, and the peacefulness was only interrupted by the rhythmic humming of an IV machine and the occasional buzzing of an automatic blood pressure check. The nurse and our families had left to give us some time with our daughter, Christina. My wife Pam was sleeping gently, with her hands cradling Christina's tiny body. I knew that time with Christina would be short, and did not have the desire to interrupt that moment.

But that moment was a time for me to reflect deeply about what had now happened to us twice. This led my mind down a path of many difficult subjects; all rocks that had been turned over many times in my formal and informal studies of philosophy and religion: Why bad things happen to good people, and how unfair some things in our world are.
But as I watched Christina's body rising and falling with each of Pam's slow, deep breaths, a part of First Corinthians filled my thoughts. “And now these three remain: faith, hope, and love. But the greatest of these is love.” It occurred to me just at that moment, that those same sentiments--so often used in marriages, somewhat interpretively and not without a certain amount of irony, since it is the thirteenth verse of the thirteenth chapter--captured my thoughts as succinctly as anything could.

During college, I braved the slippery rocks of philosophy, often flailing in my struggle of understanding, and sometimes finding myself with a rather sore bottom from some particularly treacherous falls. One of those painful falls was a study of faith during a course called “The Philosophy of Religion.” After struggling with the existence of God, and the difficulty of proving His existence from an a priori perspective, a combination of Aquinas's Origins, Pascal's Wager and the Leap of Faith attributed to Kierkegaard came together to form the foundations of my beliefs. My beliefs have grown considerably since those days, but I still bear the scars of questions like “Why do bad things happen to good people?.” I acknowledge the existence of both good and evil in the world, and attribute it to a need for balance in order to allow free will. That same reasoning helps me understand the plight of Job. And it can also explain why bad things like the Holocaust happened. Evil people have free will to do evil things whether it be the Devil or a devilish man. But what about hurricanes, tornadoes and the death of two of my children? Things that are not the result of free will or actions with bad consequences. How can an all-powerful and all-knowing God allow those things to happen? Where is the fairness? The questions are hard, and the answers are even harder. In Luke 18:7-8 it is said “Won’t God give to his chosen ones, who cry out to him day and night? Will he delay long to help them? I tell you, he will give them justice speedily. Nevertheless, when the Son of Man comes, will he find faith on earth?”” As I consider those words, I wonder whether it is indeed hubris to think that we can ever understand God and all the things of our world. It is human to ask the question. The answer is divine. And it is Faith that will let us endure.

In my great lack of sleep on that early morning, just two days ago, I also considered Hope. I thought of our first daughter, Hadleigh, and I considered how truly powerful a father's hope is. In fact, I even came to the conclusion that all parents shoulder both hope and disappointment, but it is traditionally the realm of the father to shoulder the greatest part of that burden. You might remember a movie from the early eighties called “My Life” starring Michael Keaton. In that movie, Michael Keaton's character is a father-to-be who has been diagnosed with cancer that will kill him before the birth of his son. The character decides to do a video tape to his son, containing his hopes and his advice, and his beliefs. It is a sad story, and at the same time uplifting. While the comparison is not exact, the hopes of a father are clear in that story. In Romans chapter 8 verses 22 and 23, it is written “For we know that the whole creation groans and suffers together until now. Not only this, but we ourselves also, who have the first fruits of the Spirit, groan inwardly as we eagerly await our adoption, the redemption of our bodies. For in hope we were saved. Now hope that is seen is not hope, because who hopes for what he sees? But if we hope for what we do not see, we eagerly wait for it with endurance.” There is a profound hope that has traditionally been associated with fathers that I had and will always have for Christina. And while she didn't have so many of the obvious things I would have hoped for, she also was never late for a curfew, never once had to go to time-out, and never dated that boy that I know would break her heart. In her own way, Christina lived a perfect life, even if it wasn't the life I had originally hoped for.

Love. In the same way that I think hope is associated with fathers, I feel love is associated in mothers. Neither is unique or monopolized by either, but as I have been witness to Pam's love for Hadleigh and Noah before, I know that a mother's love is truly a thing of its own. And just as we see in good and evil, faith and doubt, and hope and disappointment, love is paired with sin. Adam's original sin brought death into the world, whether interpreted literally or figuratively. But I don't fear sin with Christina. She was a true innocent. A child conceived in love. In John Chapter 4 verses 18 and 19 we read “There is no fear in love, but perfect love drives out fear, because fear has to do with punishment. The one who fears punishment has not been perfected in love. We love because he loved us first.” God gave us His only child, Jesus Christ, to die for us. It is not for us to judge why Christina has died. But we do have the chance to know love. And that in that love, know peace. And in that peace release our fears. It is right to grieve. I am convinced that no one will grieve more than Pam has. And will. And we can all take comfort that Christina will go on to a better place. And she will be loved. Because as I sat there in a shadowed room looking at my sleeping wife and the body of my second daughter, I knew that of hope, faith and love, the greatest of these is love.

Christina Ann Painter

Well, we got pregnant once more. We were excited and nervous. We had all the same tests as before but this time we were also seeing the perinatal specialist for regular fetal scans from early on.

With this disorder, you can't really tell anything is going well or going wrong until the bone growth takes off around 16+ weeks. That's typically the earliest you start to see some indictation of things going right or wrong. So I had to spend long months experiencing all the things of pregnancy, the morning sickness, the breast tendernous, the tiredness. All of that for months and months without knowing if things were going to work or not.

I was consumed with worry and dred from the beginning. Always nervous. I often cried. I even stayed on my antidepressants for a while to try to help. I tried to keep living, going on day to day caring for my daughter, trying to keep things regular and normal for her. We ended up telling both our families early on that we were pregnant again because I wanted the prayers. I needed them. Interestingly enough, it was our church ministers who we told first. We took solace in knowing we weren't alone. The senior minister at our church told us when we'd lost Noah that he and his wife had lost their first child full term. We encountered more and more people with similar background, different types of losses of course, but still losses.

I'd joined a loss support group after Noah. And ladies, I will warn you know...some people in those loss groups change after you get pregnant again. Suddenly you aren't one of them, even though you have so far to go and are not out of the woods yet. I had a very dear friend I made through the group and she never quite came to terms I think with the fact I was finally able to have another healthy child. And I don't fault her for that. If I had not been able to have Olivia, I probably would have been stuck in that same rut of pain and loss.

And not everyone understands. Shortly before Noah was delivered, but after we knew things were desperately wrong, we were supposed to go a baby shower for some friends back home. Or rather I was, it wasn't a couples thing. We got a lot of resentment because I bowed out. I couldn't take it. The thought of being there and trying to be all happy and excited for someone else, someone about to birth their first baby when all I wanted to do was cry and worry about my baby and how I was likely to lose him soon. I was in no frame of mind to celebrate anything. And people thought I was selfish. Maybe I was. But how can you really expect me to go and sit there while you oooh and ahhh over all your adorable little boy clothes when I know in a matter of weeks or days my child, the child in my belly, might be dead. I am sorry. I couldn't do it. I truly think it's one of those things that unless you've walked in those shoes, you don't know what it's like.

I didn't want to see anyone else's baby. I didn't care how cute they were. None of it mattered. It only reminded me more of all I'd lost or was about to maybe lose.

The months waiting were agonizing. We prayed. We prayed hard. Through it all I said I'd never do it again. If something happened and something were wrong with this baby, I was done. I couldn't go through it again. It was just too hard emotionally and physically. By this point I felt like I'd been pregnant two years. Between the first miscarriage and then Noah and then now being pregnant with Christina I was constantly in a stage of pregnancy or recovery or about to become pregnant.

Early fetal scans showed things not looking great. Measurements were off. We even went to my parent's church, a place we got married, to have a laying on a hands (our church didn't do that.) I was desperate. Anything I could try I would.

In the end, the worst happened and on August 14, 2003, Christina Ann Painter was stillborn in the same Richmond hospital her older brother had been nearly a year before. It wasn't the same room. As before, we got to hold her tiny body, take pictures, have some family there to hold her fragile litte body and say their own goodbyes. We elected to donate her remains to the International Skeletal Dysplasia Registry at Cedars Sinai like we did with Noah. And we had a memorial for her at our church after.

We were devastated once again and for a while, I thought my heart would never recover. Being around other babies was even worse than before. I didn't want to hear them, see them, smell them. Nothing. Everything reminded me of the precious babies I'd lost. I felt myself withdrawing more and more.

And then I kept on coming back to something miraculous that had happened at the hospital with Christina. I remember crying as they once more hooked me up to the machines, pumping medicine into my veins that would eventually make me deliver her. I remember being so upset and distraught one moment and then in the next, suddenly having this peace. Out of no where, this peace settled over me and I suddenly just knew that if I tried one more time it would be ok.

NEVER ever had it been in my plans to try again. During the entire 21 weeks of Christina's pregnancy I swore I would never do it again. If the worst happened, either we'd settle with one child or possibly look to adopt. And if we adopted it would have to be internationally because I could not stomach the possibility of someone coming to my house to take a baby from me because they'd changed their mind. I could not handle another loss. If we had more children, it would have to be adoption.

So never, never ever had I thought of trying again and suddenly I had this knowledge, this feeling that if we tried one more time it would be ok. The induction process that early on is a rather lengthy one (around 24hrs) and so we saw a parade of doctors from my ob and the perinatal specialists, 6 of them in all...I remember them coming in at various times but all saying the same thing. "If you can bear to try one more time, the odds are with you."

Each time another doctor came on duty and told me that, it stuck in my mind. Someone was trying to tell me something. Another and another and another, hammering home the point. It would be ok.

After Christina, I just knew...early on...I needed to try again. Derek needed more convincing. He wasn't so sure. He was hurting badly and didn't know if he could go through it again. And there just wasn't us to consider, but also our families and friends who had to ride this roller coaster with us. Going through the uncertainty and loss is almost too much to bear.

But I knew...I knew I would never have peace unless we tried. Derek took a leap of faith, believing in me and my convictions. As soon as we could try to conceive after Christina, the very first time, we got pregnant. And from the beginning it felt better. I had so much more hope and peace. Yes, I had moments or worry and concern and doubt, but I just felt better.

I still remember...when we were really early on....having Christmas at my parent's house. I was helping my mother get some linens out for Christmas Eve dinner the next day and she was talking to me about how we were holding up and if we thought we might consider adopting one day, or if we were done. Just talking really. And I was saying I didn't know, we'd just have to see. My mom was kneeling by a buffet, getting a table cloth out of the bottom drawer and she suddenly looks up at me and asks, "Are you pregnant?"

I was stunned and my look of stunned disbelief must have been answer enough, because her immediate response was, "Oh..good." She said she didn't even know why she'd asked if I was pregnant, as it popped into her head she just blurted it out, even though she'd never even considered it a possibility before. And her initial reaction was happy and good instead of fear and dread. I guess even then somehow we knew.

Derek and I moved from Richmond to Charlotte during the middle of that pregnancy. It was hard and sad to leave my trusted doctors, but we stayed just long enough to get through the critical weeks and scans, confirming that everything was looking ok. They wanted so badly to see me through to completion, to see that happy ending, but were happy to know things were looking up when I had to leave. One more scheduled ultrasound once in Charlotte to confirm things were still looking up and then we felt it was ok to finally breathe. Well...sort of. I never really relaxed totally until she was delivered safely and I could hold her in my arms and see and hear for myself she was really ok. And she was. Our beautiful little Olivia Nicole. Born August 2, 2004, just shy of the 1 year anniversary of losing Christina.

People ask how I did it. How could I bear to try again after all those losses? How could I manage? I know for certain, I could not have done it alone. God's grace helped me through it. He gave me the strength I needed. I know HE was there in the miracle of peace and knowledge that came over me in the hospital that day. A day and time I was facing another crushing loss. A day, like so many other before, I'd sworn I was done. I'd never be pregnant again. I simply couldn't take it again. It was too much to bear.

And yet...with HIS guidance, my world changed and a new blessing came into my life. My youngest daughter. And as crazy as it sounds, I would not change any of it. As horrible as those losses were and are, they made me who I am today and I can promise you I am a much better person for it.

The time after Noah

I cried alot. I cried often. And at first, because I didn't want my husband to see how much I was hurting and get upset too, sometimes I even hid the extent of my grief from him. I realized early on though, that that wasn't doing either of us any favors. We needed to share in our grief. Yes, we each dealt with it in our own ways, but we both needed to see and feel the depth of each other's grief.

It was hard having a three year old to care for. It was hard trying to hold it all together when I just wanted to break down and cry so many times. Some people questioned how much she'd understand and know, but she was closer to four than three and she understood alot. Alot more I think than people gave her credit for. We were told to give her a high level reason for why her baby brother died. But also to be specific. We didn't want her thinking that people died when going to the hospital or doctor or that she could just suddenly die in her sleep either (if we said the baby just went to sleep in mommy's tummy and didn't wake up.) We were cautioned to be realistic without going into to much detail and so we ended up telling her Noah died because his lungs were broken. That the doctors tried to fix them but they couldn't and so he died. But we were quick to reassure her that her lungs and Mommy and Daddy's and everyone else's were fine too.

She had some questions naturally. Like why couldn't Jesus fix Noah's lungs? Why couldn't Noah come back alive like Jesus did? It's hard to explain about miracles and hope and faith under those circumstances.

I'll never forget a couple weeks later when I was having one of my usual sad times and was awake, but laying down in our bed, just having a bit of quiet. She came in to the room and went right to the window and pulled up the blinds, I watched as she peered up from under them, looking up into the darkening sky. This little three year old, who so many people thought didn't really get it or understand, proceeded to say, "Star lite, star bright, first star I see tonight, I wish I may, wish I might, have this wish I wish tonight. I wish Noah could come back and that his lungs wouldn't be broken and that he could be here and Mommy and Daddy could be happy again." It was one of the most beautiful and sincere things I'd ever heard and while it broke my heart to hear her making such a request, it touched it as well. How sweet and amazing was my little girl to make a wish like that! And then I had to sit up, crying by now, and call her to me, trying to explain that while wishing on stars is great and fun and wonderful, sometimes those wishes just can't come true.

Hard times.

Eventually we got the results from Noah's autopsy at Cedars Sinai and they confirmed what we had suspected. He had, as best as they could tell, Asphyxiating Thoracic Dysplacia. Well, at least we had a name for it now. And with a name we found that my husband and I were each apparently recessive carriers for his bizarre disorder and that one in every four pregnancies had a chance of this occurring for us again. 1 in 4. That's still 75% chance of a healthy baby. If someone told you that you had a 75% chance of winning the lottery, most of us would probably go by a ticket. The doctors and specialists further told us that the chances of it occurring back to back was 1 in 16. So, theoretically, the chances were even greater we could have a healthy baby the next go round. Yes, it was still a 1 in 4 chance, but back to back was 1 in 16.

After much prayer and thought and discussion, we decided to try again once we got the clear for trying from my OB.

Pretty much as soon as we could get pregnant, we did. This time with Christina. And so, another chapter unfolds....

More on Noah

Losing Noah was a horrendous, gut wrenching experience. But remarkably, I was blessed to experience moments of grace through it all. As devastating as it all was, it was rather amazing to find the depth of the care and concern I felt from everyone around me, those I knew well and even strangers. It was during those awful days and moments that I realized how blessed I was in other ways. I had the prayers and support, thoughts and concerns of those who knew me, but also others who didn't. Someone would find out about our situation (while in the midst of it) and ask if they could say a prayer request for us at their church. And then someone else would ask if we could be added to their prayer list at their church. And then another and another. I can't begin to imagine how many people who I never even met were praying for us during those times. People from Wisconsin to Minnesota to California to North Carolina to Virginia and beyond. Anyway who seemed to know anyone was asking for prayers on our behalf. It was a very humbling experience to be sure. And one we were grateful for.

In those dark and depressing days, I learned to count my blessings rather than focus on what I'd lost. You feel pretty guilty focusing on one awful aspect of your life when you have so many other things going for you. We had our health, a good marriage, a beautiful healthy daughter, our parents were healthy, our sisters and brothers and families, I had two of my grandparents still living. I had friends who cared for me. A house to live in. Food on the table. My husband had a good job. We were blessed to have a church home we loved. On and on...there were so many good things and when I was down I just kept counting and counting until I felt better.

Though, I will be honest and upfront in saying I did need some medical help too. I started some antidepressants and took them for a couple of months. I am not sure if they really helped or not, perhaps it was more in my mind than anything.

Losing Noah. It was such a hard thing. I still remember the night before the procedure. I went to bed upset and crying, as to be expected. I had a very fitful sleep, but somewhere in the middle of all that tossing and turning and crying, I did manage too fall asleep. And then the dream happened.

In the dream I saw my grandmother who had only passed some 6 months or so prior. She was with my grandfather who had passed some years before. They looked younger than I'd last seen them, but full of health and happiness. I remember crying to my Grandmother in the dream, saying I didn't want to do this, that I didn't think I could. All the while she was calm and peaceful and happy, almost always smiling as I remember it. She smiled and quietly told me that it was going to be ok, everything was going to be alright, that didn't I know HE was going to take care of him. And then she motioned with her head to one side and in almost slow motion I turned to follow where she was designating and I saw HIM standing there. Jesus. He was so bright and beautiful, the light radiant on his face, it was almost too bright and too beautiful to look at, but in an instant I knew it was him. I was so freaked out, I actually woke up right then and there, but I took some comfort, believing it was a message from HIM, a way of letting me know it was ok. I was doing the right thing.

I took the vision of that dream with me to the hospital that next morning, holding onto that image in my times of grief and despair. I prayed for my grandparents to be there, to help take care of my son until I could see him again. My grandfather had wanted so desperately to see his great grandchildren and now he'd have one to help hold and love.

As I mentioned before in a previous post, they would not put a heart rate monitor on my tummy because they didn't want me to know when Noah passed, but I like to think I know when it occurred. The morning he was delivered, I remember feeling him move in those early morning hours. As heart wrenching as it was, it still gave me comfort to know he was there and we were connected. Some 30 or so minutes later, when all was quiet around us save for the repetitive buzz of the blood pressure machine going on and off every so often and the hum of the machines dosing medicine to me. My husband was dosing in a chair across the way. I was laying there on one side and suddenly I felt a section of my hair on the back of my head slide to one side, as if someone had taken a finger and just gently slid it partway through my hair, making it move and fall a bit to one side.

My closed eyes opened and I became alert, even reached back to smooth my hair back down, thinking it was really odd since my bed was backed up against the wall and there was no way anyone could walk behind me. No air vent was above or beside me. It was curious and I had no explanation and so I started to tell myself I'd just imagined it in the first place. With a sigh, I closed my eyes again and tried to force myself to rest while my body labored. (By this point I'd had an epidural and was given pain meds so it was a matter of simply waiting until my body was ready to deliver.) So there I was, still resting on my side facing my husband, my eyes closed as I tried to rest and wait for the most unpleasant of events to eventually happen. Suddenly, out of the blue, as clear as day I hear the bright and cheery sound of a little girl say, "Hi!" just beside me. It was only one word, but I heard it clearly and the inflection of the voice sounded so happy and sweet.

This time I called out of my husband, asking him if he heard that. He confusingly asked what. I asked if he heard someone say 'hi' or if any of the machines made some weird noise or anything. Nothing. He said it was silent, not a thing was heard. I told him what happened then, a few minutes earlier with my hair and we both sat in relative silence, wondering what it all meant.

And then in a flurry of happenings, I seemed to go from nothing happening to delivering all at once. Within 30 minutes of hearing that Noah was stillborn.

Looking back, this is what I like to think happened. I like to think my hair moving was when his guardian angel came in, preparing to greet him and take him home. And the sweet little 'hi' I heard was her saying hello as she reached for his tiny little hand to take him with her. It was only one word, but it was so sweet and happy sounding and I imagine in that final moment when those of us who are blessed enough to go to Heaven finally do go, what else would that welcoming sound like but sweet and happy and joyous?

Monday, October 6, 2008

For Noah

This is a letter I wrote to Noah after coming home from the hospital without my baby. There is nothing quite like leaving the maternity wing alone, or having your milk come in for a baby who isn't there. This is for Noah, I read it (through tears) at his memorial.

For Noah,

How does one even begin to address the gift of you? That is like asking what is it about the ethereal brilliance of a thousand trillion stars beckoning at night from their blanket of blackest velvet that makes us stare. What is it in the innocent smile of a child that makes us smile? Why does the scent of fresh cut grass make us breathe a little deeper and think of our childhood? Why does the crackle of a fire on a cold and blustery night fill us with a sense of peace? Why does the magic of a rainbow and the promise of what is at its end captivate us so? And why do the first wet, feathery touches of perfect little snowflakes upon our cheeks at winter so often make us smile, turning up our faces as we stick out our tongues for the hope of more?

Noah, I can't think of you and not feel the heart ache for all that we will miss. Even now, I have only but to close my eyes to see the impish smile of the toothless grin you would have had as a baby. I shed a tear and can hear the echo of your laughter in the image of a young boy, gleefully running down the hallway from your father at bedtime, watching you pretending to be some superhero in your pajamas as you wildly dive into your bed. I think of the Christmases and Thanksgivings we will miss. I think of all the birthdays that we will never get to see you hold your breath to blow out the candles as you make a wish. We won't ever get to see you dressed as a cowboy, pirate, or some hero at Halloween nor ever get the chance to cheer you from the sidelines of a little league game as we might have liked. Never will we have the chance to kiss the tears from your cheek and gently place a Band-Aid upon your wounded knee. But always, dear Noah, always you will be loved, and always you will be missed.

I shall miss the warmth and joy of walking hand in hand with you. I will miss those first teetering steps, those first babbles and wonderful coos. I shall miss all those wonderful little hugs and kisses. I shall miss all the "Mommy's and Daddy's" I will never hear uttered from your lips. I shall miss the joy your father would have had in teaching you all about sports, and games, and life. I shall miss seeing you grow up and yes, I shall even miss you fighting with your sister. I shall miss the rambunctious child you surely would have been. I will miss the wonderful man I know you would have become.

I know to ask why is a difficult question. I know it is not one I should really ask. But being human, it is one that comes to mind nonetheless. The truth is I don't know why and I honestly don't think anyone else really knows and so we have to console ourselves the best we can. I do know there is a greater plan in this life, one greater than we could ever hope to comprehend, and sometimes things happen we can't explain; things sometimes happen differently than we would have wanted. But God knows the plan and holds us all in the palm of his hand. He will love us and protect us, even in the things we do not yet understand.I know without question you are in a better place, and though I will miss so very much every thing you could have ever been, and done, and seen, I know you are safe and happy. I know the Lord will hold you close and protect you. I know He will let you know how very much we love you and how much we wanted you here with us. But you are at His side now, and so hand in hand with Him you shall walk, within His protection and love you will always live. Instead of a mother's hands to hold and guide you, you shall have so much more. You are blessed with the hands of the Lord to catch you when you fall, and a million angels to be there at your every call.

You will always be in our hearts and minds, dear Noah. In every sunrise I shall see the warmth of your smile. In every sunset I will see the majesty of the gift of your short presence in our lives has provided. With every twinkle of the stars in the endless night, I shall know you are watching over us. I will know the whisper of your voice in the wind and be content for I know you are safe and happy. Noah, there is such much I would have liked to have shown you, so many things I would have liked to have said, but for now those things must wait. In the meantime, rest well my son and be at peace, sleep well in the assurance you are loved and missed. You may be gone from our lives, but you will never be forgotten, the light of your love and precious life will always live within us and glow ever steady until we shall meet again. I thank God each day for the gift of you and feel so very blessed and privileged to have had the chance to have you in our lives, no matter however brief that time may have been.

Rest well, dear son.
I love you.

My story

Hmm, where do you begin with something like this? How do you begin? Even now, nearly 6 years later, my eyes well up as I think about all I've gone through and all I've lost. Losing a child is an experience that changes you forever. There is no forgetting. There is no getting over it. And honestly, you don't want to. From the moment you know you are pregnant that child forever changes your life, their whole life seems to flash before your eyes as you imagine everything they could do and become. And when that is suddenly gone, when in the blink of an eye it all vanishes, it is not something you just 'get over."

My husband and I were blessed to have one healthy child before any of our problems began. We had no clue how lucky we really were or how easily something could go wrong. Oh, we loved our daughter for sure, more than anything, we were just blissfully ignorant about the struggles and devastation that others had to endure.

Our lives forever changed when I was about 19 weeks along with our second child (though we'd had one early miscarriage between the two.) Everything in the pregnancy had gone well, the AFPS, the screenings, everything had been normal and just like you'd want it to be. We had no inclination that anything was wrong and so went to our routine ultrasound halfway through the pregnancy with hopeful hearts and expectant eyes. We even had our three year old with us because she was eager to see if Mommy had a girl or boy in her tummy. All through the ultrasound things looked great, at least to our uneducated eye. The baby, a boy, had two arms and two legs, all the fingers and toes were there, the heart was beating nice and strong and the little guy was just swimming around, kicking and moving like you'd expect a healthy baby to be doing. Everything seemed so great. We are ecstatic to have a son on the way. Derek couldn't have been prouder. What man doesn't want a son to carry on his name?

And then, since little three year old girls are squirmy and impatient, he took her off to go to McDonalds and play while Mommy waited for her regular Dr. visit and the official ultrasound review. Again, never dreaming in our wildest dreams anything was wrong.

I still will never forget the Dr. coming in to the room, the dull fluorescent light beating off the white painted cinder block walls, me sitting on the end of the examine table, swinging my feet back and forth as I felt the baby move inside me, still doing somersaults. I was happy and ready with a smile when the Dr. came in, clipboard in hand. To her credit, she never really let me see the panic she must have been feeling in those moments. Or the dread. After the cursory how are you, how are you feeling today things, she said there were a couple of things that showed up on the ultrasound that were of concern. My smile faded and I felt like I suddenly couldn't breathe. What do you mean 'of concern?'

She went on to point out that the baby's femurs (upper thigh bones) were measuring a little small and there was some sign of fluid in the kidneys. Already I was freaking out, what does that mean?! It meant that there was an increased chance of Downs, though she was quick to reassure me that maybe it wasn't, maybe it was just a fluke since the AFP and other tests had all come back normal, showing low risks of just that. I wasn't over 35, so many of the things you'd be concerned about simply weren't there.

All the while I am doing my best not to cry, to try to stay calm even though my heart was breaking and I wanted to scream. No! This can't be right! This can't be happening! My baby is fine! My son is fine!

They scheduled me to have a fetal scan (really long ultrasound) the next day with a perinatal specialist and meet with a genetic counselor (something you had to do when meeting with the perinatal specialist.) I managed to hold it together until I got outside and opened the car door. I lost it was soon as I did and let out the most heart wrenched cry/sound I've ever uttered in my life. I can't explain it, I just couldn't control it. I started crying hysterically as soon as I got in the car, completely freaking out and panicking my husband who didn't know what just hit him. I tried to explain through my uncontrolled sobs, I couldn't even mask the pain and fear from my daughter in the backseat. It was just too painful. Too unexpected.

We get home and I somehow manage to tell my husband what was said at the Dr.'s office. We are devastated. Everything, the life we'd imagined for our child is changing before our eyes. But through it all, as bad as it was, as unnerving, we somehow managed to console ourselves. Even if it was Downs at least he looked healthy, his heart looked strong, he was moving and active, he had two arms and legs, fingers and toes. If something was wrong, if he had Down's, it would still be ok. We could manage. We'd take our son in whatever form God gave him to us. They were probably wrong because he looked just fine to us and all the earlier tests had been negative, but if he did have Down's, it would be ok. We did a lot of praying and crying that night, but in the end...felt hope. The worst we'd hear the next day was that he had Down's and it would be ok. Everything would be ok.

The next day, scarcely able to breathe, we went for the fetal scan, all along thinking it was some mistake soon to be rectified. The fetal scan was long, and all during the time it was being done and the technician was telling us which bone she was measuring, the flow of the blood, the placenta, all of it...we kept thinking it was all some horrid mistake. Our son looked beautiful and healthy, moving and kicking and squirming, the heart beating so strongly. My husband and I exchanged more than one look, thinking in our hearts it was all fine. He looked great.

Of course the technician was not allowed to tell us anything, other than what she was measuring. And again, to her credit, she never let on anything was wrong and so we were utterly unprepared for the Dr. when he came in (after reviewing the ultrasound images and notes outside) and he picked up the wand and started whizzing it over my rounded belly, saying there were several things of great concern (first shock) and then he uttered that most dreaded of words, one that forever changed my life, "Possibly lethality."

OMG, how was this happening?! What was happening? It was all too fast, too sudden, too shocking. How could this be happening to us, to our precious baby? To a baby we so desperately wanted and loved? To a baby who'd seemed healthy for 19+ weeks?

Naturally, I lost it and started crying amid the Dr.'s apologies for being so abrupt, my husband clinging to my hand as I tried to hold still and let the Dr. point out this bone or that, all things pointing to something majorly wrong. In came the genetic counselors, a room full of virtual strangers all talking and staring at the screens while the wand passed over my shaking belly (I couldn't stop crying.) Apparently what was wrong with our son was so rare, everyone was wanting to see it and talk about it. I felt dizzy and sick. I felt like I couldn't breathe, like the world was collapsing around me.

There was something dreadfully wrong. The baby's upper arm and leg bones were measuring alarmingly short for the gestation. The rib cage was under developed, the heart was already taking out about 50% of the space, and not because the heart was enlarged but because the chest cavity wasn't big enough. There was some concern the heart we'd thought was beating so well and strong had a major problem.

The next few days were a blur, scheduled for more tests, amnio, blood tests, ultrasounds with perinatal cardiologists. More ultrasounds. More fetal scans. More waiting and more dismay and heartbreak.

At the end of it...they thought they'd narrowed it down to one very rare, but usually lethal type of skeletal dysplasia. Asphyxiating Thoracic Dysplasia. Basically, it is characterized by a shortness of the upper arm and leg bones, but most importantly the ribs and chest cavity. There isn't enough room for the lungs to grow to a sufficient size to support life outside the womb. As long as the baby was inside me, he could live and breathe through me, but the moment he'd be born and umbilical cord cut, he'd suffocate and die. It was such a rare disorder there was no genetic test for it. And it is only really confirmed in xrays and/or autopsy. We had the Xray, but they still couldn't say for sure. We had to wait and monitor the bone growth to watch the trends, all the while running the risk of my body realizing something was wrong with the baby and turning against the pregnancy at any moment. Time was against us.

More fetal scans, more tests and it was pretty much decided, the baby had what they thought he had. They said they couldn't tell us what to do, but warned about my body turning against the pregnancy. In the end, it was something the Dr. said that helped up make that fateful choice. He said the baby would never leave the delivery room alive, regardless of when that would be. The longer we waited, the greater the chance I was endangering myself. And in VA, if you get beyond 24 weeks I think it was, they are obligated to try to resuscitate the baby and try to save his life. I couldn't stomach the thought of my precious baby being poked and prodded and everything else while he suffocated or was in pain or discomfort. I couldn't do that.

And so, they induced me. I had to walk into the hospital with a living, breathing, kicking and squirming baby inside me to be induced at 22 weeks. A baby so desperately wanted and loved. A baby I did not want to have to let go of. It was the hardest thing I ever did in my life.

We had the choice to do a D&C or birth him and it wasn't a choice at all for me. He was a living breathing baby, the birthing was the only option my heart would allow. We were told he'd most likely pass during the labor, the stress of it would be too much for him and he'd die. I can't begin to tell you how horrible it is to be hooked up to IVs pumping poison into your veins, medicine that will cause the premature birth and death of a baby you so desperately want. He was moving and kicking inside me. He was so loved and wanted. It was agony.

Around 24 hours later after being induced, Noah Adam Painter was delivered on a quiet October morn in room 13 of a Richmond hospital. He was tiny, only 9.5" long and 14 ounces. He was tiny, but beautiful. He looked just like a little doll. We got to hold him and say good bye, but after he'd already passed. That had happened during the birthing process. We weren't sure exactly when because they didn't want to monitor his heartbeat because they knew it would upset me. I like to think I know when it happened, but that's another story for another time.

We held him in those quiet moments, snuggling our tiny son in our arms, cradling his still body against our hearts, willing him to feel the love we felt, so reluctant to say goodbye. We had a minister from church come and say a prayer with us. Some family members came to see him and hold him too. Eventually, with one last kiss upon his forehead and whispered I love you, I handed him over to the waiting nurse so his remains could be flown to the International Skeletal Dysplasia Registry at Cedars Sinai in California. We were told it was the best institute in the world when it came to studying this sort of thing and we thought that the best way to honor Noah was to try to help others. A few days later, we had a memorial for him at the chapel of our church.

It will be six years ago this October 31st.