I Wanted So Much For You...

We were given this poem at our infant grief group meeting last night.  It was written by Maria LaFond Visscher, as she grieved her child's death.  It speaks so much of what my heart cries, and so I wanted to share it here.

In honor of my baby who died:

I wanted so much for you, my sweet little baby,
I wanted to change your diapers, not my life.
I wanted to work with you, not my grief.
I wanted to dress you, not bury you in your last dress.
I wanted to hear the sounds of your crying for me at night,
not my own sounds of crying for you at night.

I wanted to see you grow, not the grass upon the grave,
I wanted to see you asleep in your nursery, not in the casket.
I wanted to give you life, not have you see death,
I wanted to show you off, not go on alone without you.
I wanted to comb your soft and silky hair, not save a lock of it.

I wanted to pick up after you, not put down my dreams of you,
I wanted to hold you in my arms, not have empty arms,
I wanted to walk late with you at night, and now I feel so alone.
I wanted so much for you,
My newly born, newly gone... baby and child that I longed for.
I wanted so much more... I wanted you.

How Am I Doing?....

When we were in the NICU I saw some t-shirts that said "Riding the roller coaster of the NICU".  It was so true - one hour good news and you feel on top of the world, full of hope, the next hour bad bad bad news and you have plunged all the way back down again.  I have never enjoyed roller coasters.  The last time I was on one was when we were on our honeymoon - I did it for my husband, but I kept my eyes shut the whole time and kept telling myself as my hands gripped the security bar in front of me that it would all soon be over, and it always was.  The difference between roller coasters that one chooses to ride and the emotional kind that we do not choose to ride is, well I guess there are several, first one is a choice and the other is not, and one we know is coming to an end soon and the other we don't know when or if the end will ever come.  As I would stand in line to get on a roller coaster on our honeymoon I would watch the people before me successfully complete their ride having survived, and tell myself that if they can do it I can too.  Isn't that true for most of life struggles, we want to see those who have gone before, what have they done, how are they surviving?  Seeing that someone else has been there before us gives us strength to go on.  That is why we are trying out a "infant loss" group/class that runs for six weeks to see if we can meet more couples who are there now or have been there before.  Many people often ask me, How are you doing?...I never quite know what to say, it really all depends on the day and where I am on the roller coaster.  Am I on the way up a hill (that I can handle) or am I plunging down the other side (that is much more difficult).  Every day is different and sometimes hours within a day are drastically different from the other.  I might be being silly with my boys and having great fun smiling over their antics or word choices one moment, and the other wanting to crawl in the corner under a blanket and cry my eyes out.  It is exhausting.  So, to answer the question.  I don't know how I am doing, but I do know that I am on the roller coaster - having chosen to stay and live through this.  Hoping that the upward climbs get more frequent, and the downward plunges are not as steep.  Hopefully one of these days I will be able to open my eyes and unclench my hands and find the roller coaster is slowing which can only mean that the end is in sight - though I fear that I might be on this roller coaster for a long long time - it will probably change its speed and dramatic intensity but I will still be in the front car holding on.

Finding Myself

Have you ever heard the saying "I have left to find myself, if I return please keep me here until I get back."  Cute, but true.   As a busy mother, wife, and business woman I have often felt that I had lost who I was - those important details that make me comfortable and happy being me.  I suppose that comes from giving to and encouraging others so much throughout my day that I do not have energy left over for myself.  This journey that I am currently on is forcing me to find myself again.  It all really started as a crisis of faith, as I began questioning everything that I have ever believed to be true about God and my relationship with Him.  As I travel this road I know that that part of my journey is very important, but not, interestingly, the only aspect of it that needs a renewal.  I have come to the realization that I need a realization of spirit.  In that process I have begun doing things again that I have loved, hobbies I guess you could call them, but thing that have been put aside over the past 7 years in favor of meeting the needs of my husband and children.  Don't get me wrong, I am still meeting their needs, but the difference is that I am admitting that I have needs too, and I am taking the time to meet them.  If that means that I need some time alone to journal and cry then I let them know I need quiet time.  The thing that I have learned through this process is that amazingly I have lived for years believing that they wanted me to go go go and do do do and I was growing resentful which really affected my marriage and my relationship with my boys.  Now that I am honest about what I need for myself and am guiltlessly taking that time I feel renewed and am able to be a better wife and mother even as I am on this journey of sorrow in my life.  And have found that they do not resent that, but actually encourage me to do so.  My oldest has given to asking me, when he can tell I am tired or out of sorts, "Mommy do you need to go to the Japanese Garden?" (my favorite place of rest) :)  So what am I doing for myself?  I am embroidering again - making fun surprises for people I love.  I am reading again, for fun, not just for knowledge.  I am taking black and white photos again.  And, ready for this....I am exercising again - it has been 7 years since I really did anything "real" in that area - it hurts, but is amazing!  It took this, this moment of sorrow to completely change my life and my perspectives in it.  I wish it hadn't.  I can see that I let the pressures that I felt or put on myself take over who I was in my daily life, and the results were all negative.  Those things also kept me from a deeper relationship with God, and I pray that that relationshipw will be renewed stronger then ever, even though I am very confused and angry right now, I am still seeking.  Now, that I feel there is nothing I could loose or nothing anyone could say that would affect me as greatly as what I have experienced I feel the freedom to re explore me; and so far I am liking what I am finding.  My hope would be that anyone reading this will take the time to examine who they are and live their lives in joyful freedom - celebrating the gift of who you are as a person both to yourself and the people around you.  You are here for a purpose - find it - live it - love it!

Jesus Wept

I have to confess that the hardest part of being in the place of immense sorrow is holding on to Faith.  When we were in the NICU and posting daily, sometimes multiple, updates per day I felt a sense of calm and peace, and I knew it was only by the grace of God.  I was shattered on the inside and scared out of my mind but we kept going.  I remember saying to both my husband and my mother that I thought that God had gotten me mixed up with someone else because I was not strong enough for this.  I am sure many of you have heard the staying, "God does not give you more than you can handle."  But every moment of every day, though the swells of sorrow threaten to overwhelm me, I am still here.  Since Ethan's death I have cried out to God over and over again asking for his Peace to comfort me, and begging to feel him near.  The year before Ethan, when we miscarried our third child, I cried out to God and begged him to let us keep our baby, and as that precious life slipped away I was overcome by grief and anger.  I had believed in a loving and just God.  I had worked with abused and neglected kids - I saw those children whose parents did not know how to even to begin to love them, and God has now taken away two children from a family who would have poured out so much love upon them.  Being a big believer in justice in our world, I find it difficult to fathom how a God who is justice and love can turn away.  I have been struggling and angry and yelling and crying all at the same time, and our pastor friend told me that was okay, because God is a big God.  So I have been letting him have it, but it hasn't helped.  Then two days ago I went to our local Christian bookstore - desperate to find something to help me deal with my grief and growing depression.  I found a book by Beth Forbus, "When Love and Sorrow Embrace."  I wish I would have found it after I miscarried, but it has come into my life now.  It is directed towards women and men whom have lost a child through miscarriage or stillbirth.  Our story is close enough to that to make sense to me as well.  I was reading in it today and found a verse that I had read many times before and heard many times before.  In the story of Lazarus being brought back to life it says, "Jesus Wept."  He wept with those he loved, not because he was helpless to change the situation and would, but because he loved them and felt their pain.  What a comfort - in that  moment I felt the arms of Jesus go around me, shaking with his shattered tears as his wept with me.  But the true glory is this:  just as Jesus knew he was about to reunite Lazarus with those who loved him and he relished the thought, so he knows that just as we planned and waited for the baby we miscarried and Ethan's arrival, but had to say "good-bye" before "hello"; now in the arms of Heaven, they are both planning and waiting for my arrival - when there will be no more "good-byes" but only joyous "hellos".  Hope though dim yearns to stretch toward faith relying on the comforting grace of my savior's arms.

The Lost Brotherhood

I run a childcare out of my home.  I started it 5 years ago so that I could spend time with my own children and still generate income - it is hard for a social worker to work from home. :)  Running a childcare has been interesting since loosing Ethan, but for the most part I have been able to separate my grief of loosing my own child from caring for other people's children.  The part that is proving difficult is my reflections.  As I hold another infant and knowing I was cheated from seeing Ethan make developmental progress or never got the chance to feed him.  But even sadder still, is when I see my older two interact with the little ones and how caring and gentle they are.  They are always the first to sing a song or dance a silly dance to help calm down an upset infant.  They will search high and low to look for a missing toy or pacifier.  I weep tears on the inside as I am smiling and encouraging them on the outside.  They have missed the opportunity to be Ethan's big brothers - and they would have been good at it.  They will never know the joy of teaching him things and helping him learn.  All those things that go along with being brothers - the secret languages, inside jokes, and crazy creative things they come up with to do.  I miss that for them.  Instead they blow their baby brother kisses  up to heaven each night and still cry from time to time.  We have pictures of Ethan around the house and they recently requested one for their room.  I am glad that they had the chance to meet Ethan twice while he was still living - it was hard to explain to them why he would never come home, and their grief was shattering to my heart, but, despite that, it was the right thing to do.  They wanted to bury Ethan with the beanie baby chick and bunny that they picked out for him, so that he would have toys in Heaven.  He is very real to them and is their baby brother, present tense.  My three year old has had a more difficult time understanding the whole thing.  After Ethan's burial he kept asking to go and get his baby brother out of the ground so that they could play.  He no longer asks that, but understands that he is in Heaven.  They are excited about sending Ethan a balloon with a love message on it for his birthday.  I don't think they will ever truly understand the fact that they are missing a relationship with their baby brother - they have one.  A very unique and special relationship from here to heaven, evidenced as my oldest says, by the dragonflies, moon, and stars.

Well Meaning Family...

Today we first have to answer the question of, What is family?  There are the blood relatives yes, but then I have always felt that our family is the greater body of people that we have around us.  Those whom we interact with on a consistent basis and have an impact upon your life.  Maybe this isn't true for you, but it seems to be to me, that my relationships with the none blood relatives in my "family" are healthier than the ones I have with my blood relations.  My husband's family functions under the auspices of another culture, and that has created very unique interactions during this grief process and is a topic for discussion another time. 
Back to family, and do they mean well?  Why is it that when a tragedy strikes someone people swarm and care for 20 minutes and then back away at the end of the conversation and never mention it again.  It is as if, if they do not say anything then they can make it go away.  Is it their desire to not cause distress or to not be distressed themselves?  And the role of family in this situation.  Is it my job to reach out and say "I am sad today"  or "I am angry today", or do I wait for them to call and check in?  Or, does all of their lack of contact mean they just do not care.  Even when we have been together as a family, no one asks, no one.  Am I just supposed to announce to the room how we are doing?  I always thought that when people loved each other they demonstrated caring when clearly the other person is going through a hard time.  Or, maybe they think we are over it already. 
I guess my point would be - we are relational beings and we need each other.  When people we love the most, do not seem to care when we are hurting the most or at our lowest point that makes it WORSE not better.  So if you know someone who is hurting or low pick up the phone, drop an e-mail or go over.    Do not be afraid you will say the wrong thing - open yourself up to feeling with them.  No one should have to walk alone.  Not that you have to take on someone's pain, but giving them some of your hope is what matters.  Show someone that you care because that very simple act will help someone see a ray of light in a very dark world - and it may be the light that saves them.

Hope...or lack there of...

It has been four months since we were in the heart of the struggle, and two even three months ago I would have told you that we were coming through the grieving process amazingly well.  I even read a book in that time that shared another mother's story and she said it gets harder, and I thought we were not going to experience that.  But, as I have recently found out she was completely right.  I don't know why or what has happened to really change things, other than the realities seem so much clearer.  Which is odd in a way - I knew the same information before and had the same  feelings, but now they are just so much more pronounced.  Every time my thoughts turn to Ethan and the realities of life now, I feel a sock to my gut - my ability to breath is taken away and I turn into a faucet of tears.  Not tears I can silently control, but gut wrenching, soak through a Kleenex box, and end up with a headache tears.  Everything is overwhelming and I just wish I could get past it or get rid of the feelings, but as more people as my husband how I am doing and they share with him their personal experiences of loosing a child, they always share that the pain never goes away and that for many, even though it is years later, they still cry some nights.  I am not excited about living in this for the rest of my days...how to get beyond the despair and find hope and joy again?...  That is another thing that I have found.  People are quicker to come up to my husband and ask him how I am doing, then ask me directly.  I DIDN'T DIE!  MY CHILD DID!  They maybe are doing that to spare me or themselves the emotions, but it actually hurts more.  It makes me feel so very alone, and that everyone else has forgotten Ethan and no longer cares about our pain.  I know that life goes on, but I don't get to go on beyond this pain and reality, I take it with me wherever I go into the future.  It has become a part of who I am, the question is how do I let it define me now?  How to I find hope from the sorrow?  Is it a matter of time, or something I have to learn how to live with through time?...

In Memory

It was not until we were leaving the NICU for the last time that we began to think about how we were going to celebrate Ethan's short life.  Even though we walking through one of the times of greatest sorrow in our lives we wanted to celebrate the joy Ethan had brought us.  He had been prayed for, hoped for, and loved from the moment he was conceived.  It was the funeral director who asked me to write something for his in memory booklet, really encouraging me to remember that Ethan had been a part of our lives for the last 8.5 months not just 13 days.  This is what I wrote:

"Our precious Ethan, so full of  strength and courage, is our little angel sent from above full of wonder and full of love.  We are so blessed to have had Ethan as part of our family for 9 months here on earth.  He made sure that Mommy ate a lot of salad and grapefruit daily.  He love to wake up and kick Mommy at night when she was trying to sleep.  Ethan love to snuggle in Mommy and hear stories from Baba and listen to him play the piano.  Most of all, Ethan enjoyed the nightly shouting into Mommy's belly button by his big brothers, and the kisses good night.  Ethan's 13 days outside the womb were spent cuddling in Mommy and Baba's arms, sucking on his pacifier, and sharing his incredible strength, courage, and love with everyone around him.  We will forever remember our little "tiger" and hold his "piano" hands, caressing his thick black hair, and kissing his soft little face.  We know that God has many purposes for Ethan's life, and thought we do not understand them all right now - we know immense love and peace in the knowledge that Ethan now rests in the arms of Heaven - beautifully perfectly whole."

As we prepared for remembering and sharing our Ethan with so many who had never met him, we were given a prayer that really meant a lot to us and we shared it with others at the memorial:

"It seems we must now give our beloved Ethan back to you, O God, who first gave him to us.  Yes, as you did not lose him in giving him to us, so we do not lose him fully by his return to you.  For you do not give as the world gives, O Lover of Souls.  What you give, you do not take away; for what is yours is ours also, as we are yours.  And life is eternal and love is immortal, and death is only a horizon.  And a horizon is nothing but the limit of our sight.  Lift us up, strong and healing God, that we may see further; cleanse our eyes that we may see more clearly; draw us closer to our Ethan who is with you.  And while you are preparing a place for each of us, prepare us also for that happy place, that where you and Ethan are we may also be forevermore.  Amen"

We decided to have a private family burial prior to the memorial service, so that the service could be a celebration of his life.  At the service a good friend of ours read  "The Dragonfly Story", my brothers sang a hymn, and we had the whole group sing a bunch of well known hymns ending with "I'll Fly Away". 

It was over the next few weeks after the service was over that I read a book which told the true story of another family saying good-bye to their 7 day old baby girl.  She shared something in that book that I thought was a really neat idea - at the Burial - the parents had a pink helium balloon and wrote a love letter to their daughter on it - they let it go at the end of the service.  Then during the memorial service they had everyone there go outside and send up their own pink balloons.  I thought was a really neat idea and even though we couldn't do it anymore for Ethan's Memorial - we have decided to do it on his birthday. 

We had lived life with Ethan, gone through the whirl of burial and memorial, and now had to find a way to live without him.

Neonatal Hemochromatosis

If anyone has ever had a child ill and the doctors just look at you and keep saying "they are a real puzzle", you know what we went through.  The constant uncertainty, and just wishing and hoping for a good word.  We started not really caring "why" our precious baby boy was so sick, but just wanted to make him better.  We never left his side, and my hand never left his fingers or his precious head willing him to keep fighting, to stay with us, so that we could bring him home.  His brothers were so excited for his arrival - for 8 months they had been kissing mommy's tummy and yelling good night to him.  They had helped pick out baby clothes and stack the diapers.  My two year old wasn't so sure what was coming but he understood the concept of a baby.  My five year old had been praying every night for mommy's baby since we had miscarried in the spring of 2009.   And yet throughout my pregnancy I was filled with a sense that something wasn't right, everyone helped me brush that off that this pregnancy was so completely opposite of my first two because it was going to be a girl.  And Ethan wouldn't cooperate for the four ultrasounds that we had, so we were never sure.  Yet, every night as I talked with him and rubbed him through my skin, I prayed that he would be well - I had never felt  that before and told myself it was as a result of the pain from our miscarriage.  The day I went into labor, went so fast it is almost a blur.  The first shock came after two hours in labor they went to break my water and there was no fluid, and there had been no evidence of ferning - that my water had broken previous to labor starting.  Then he was only 4 lbs, 6oz - the same weight he had been estimated to be at the last ultrasound - six weeks before.  Then the NICU staff whisked him away - but not before telling us he wasn't breathing well for a 36.6 week gestation baby, and I could see the looks of concern and confusion on all the doctors faces.  Right before they left the room they brought him to me and I reached out to touch his little hand, said his name, and he looked right into my eyes.  I will never forget that look - there was so much wisdom in that look - I felt the depth of him and knew that he was looking into the depth of me.  What followed was a true roller coaster of information, surgery, and medications.  All the while they were seeking answers and I just wanted to hold my little boy.  Four days before Ethan left us, we were told their working diagnosis was Neonatal Hemochromatosis - which meant nothing to me then, other than that there was nothing they could do for him, and they had never diagnosed a baby with his rare condition before.  We were faced with the reality that Ethan was leaving us, he would never sleep in his cradle, wear his going home outfit, play with his brothers, or crawl into my lap and call me mommy.  The days that followed were spent saying good-bye.  Making sure all of his relatives met him, held him, and kissed him.  We were blessed with one last full day with Ethan before he left us - the nurses left us alone, checking in every once in a while letting us have our final moments with our son alone.  When he breathed his last and left us, there were conflicted feelings of peace knowing he was no longer in pain and the relief of that.  But, also a more intense pain then anything I have ever known.  It was only after he was gone, and the rush of his memorial service and burial was done, that I began searching for answers.  Only to wish that I hadn't, for what I found compounded my pain even more.  Neonatal Hemochromatosis or NH is a disorder that probably happened within Ethan because my blood somehow had contact with the baby's blood whom we had miscarried the year before.  My body formed an anti-body against the fetal liver protein and targeted it in Ethan, essentially taking his life.  The worst of it was that I found out that if we would ever become pregnant again, every other child would have a 95% chance of having NH.  I felt robbed - this wasn't my life choice.  I did not choose to not have any more children.  Then I found through my doctor that there is an experimental treatment, and all trials have been successful, but it is expensive and it feels hard to believe that everything would go right.  Right now the pain is a deep well - not only loosing Ethan, but loosing my hope and dreams for a daughter or another son.  I know that I am blessed, but that doesn't change the question of why has so much of what I desired been ripped from me?