She Brings Joy : Year One

Your fingernails would be clean, with moon-shaped beds. I would be tempted to polish them, even at only 10 months old. You have to forgive me; I have never been the mother of a baby girl before. I was so looking forward to caring for your fingernails.

You would have had dimples in your hands. They would be plump and sweaty. They would grab onto things that they shouldn’t be. Then they would hold tightly when I tried to take those things away.

All of my children show strong tempers, so it would become a battle of wills to remove anything you really wanted to hold on to.

I guess that’s kind of how I feel about you.

I should be holding your hands as you toddled around. You would wrap your little fingers around mine, hefting your weight as you take tentative steps- pulling your knees up high and setting your feet down softly, unsure of where you are taking yourself.

But then I remember- even if you were here, there would never be any first steps for you. Doctors called it sacral agenesis. I called it perfection.

Your hands worked just fine though. You usually kept them in front of your face. This made it difficult for us to get images of your face during ultrasounds.

Sometimes, you are so close, that I can almost smell your baby skin. If willpower could bring you back to me, you would have already arrived.

I want those hands, so desperately. I want those hands with little black marks in the creases, and playing in the mud, or in your food…. In all of the things that they’re not supposed to be touching.

I see other moms holding their baby girls. The baby will put her hand in front of mom’s face, and mom will bat it away. I want to say,

“No- stop. You are taking her hands for granted. Can’t you see how magnificent they are? What a marvel your daughter is, all put together with her organs neatly stuffed INSIDE of her body.”

If you were here, I would let you explore my face with your hands like a blind person. You would pull at my eyebrows. I know this because at one point in time, almost a million years ago, I have had babies who lived- and they pulled at my eyebrows. You would pick at the mole on the side of my mouth, trying to remove it because it looks like a speck of dirt.

I would close my eyes, while your fingers trailed over my face, feeling the contours of my skin, knowing me intimately.

I wonder what your hands would have done in the space of a lifetime.

I imagine all of the actions taken by my own hands, and I vow to use them more wisely. I vow to use my hands for things that I would imagine you doing.

But I won’t. After a while, I’ll forget about my promise, and go back to “normal.”

It is difficult not to idealize you, my baby daughter. You would have been perfect, I know. The exact person I thought you would be. All of things that I wanted for you, you would have. You would love my preference for long hair and books. You wouldn’t mind my old-fashioned ways. Your hands would be next to mine, kneading bread and making jam.

I want your hands, right now. Each tiny finger was so valuable to me. I would have walked around in the grocery store, pointing them out to strangers- “look how beautiful her hands are!” And they would have been so awestruck, that they would stand still, silent in reverence.

Your hands would have done so many lovely things. They may have nurtured children. One touch from them may have healed illnesses- or maybe they would have created stunning works of art. People would flock from the world over to gaze at them, in their pristine perfection.

Your hands are one great big missing link in the chain of my life. It is broken, just because I can’t hold them in my own.

And I think I am safe in assuming that I am not the only one who has lost out, in a world where your hands are missing.

Tuesday, October 25, 2011
2 Thank You For Visiting

The Contender

Baby Loss

Thursday, October 20, 2011
4 Thank You For Visiting

Absence of Fear

Baby Loss

My young son went on his first overnight, scouting camp trip. My husband is with him, sharing a tent and keeping careful watch over him.

I am terrified.

Of numerous things- there are 2,000 people at this campground.

He could get lost in a crowd- he is so very small and one glance away, and my husband could lose his visual.

There are woods nearby. I imagine him shivering a cold, dark place… hungry, frightened, and lost.

At any gathering where there are a multitude of children, you run the risk of predators. Someone could lure him away from camp with a promise that his tiny little comprehension of evil finds no suspicion in.

He could become hurt, far away from the modern convenience of almost immediate emergency room care. There may not be ready access to ambulances and other emergency transport.

This is the reality of my parenting, post-loss. My expectations for safety have been shattered. Part of me doesn’t trust anyone- even my husband or children, with this smallest member of our crew. I cannot bear to have him out of my sight.

Not to be underestimated is the fear I live with for each of my older children- one of my sons, living with friends in the city. My daughter away at her freshman year of college. The other son, here in the house but traveling and growing more and more independent every day.

If I had my way, all of my children would come home. They would stay in my house, getting fat and lazy, while I braved the world to bring them food. I have no need of colleges and apartments, and steady significant others who may break their hearts, putting them in another type of danger.

This is the world that I live in each and every day.

At first, I thought that since I had faced the most fearful thing that a person could face, and lived through it, that I would be fearless. I thought that nothing could touch me. That didn’t turn out to be the case.

I don’t know if I could live through it if it happened again. I tell myself, of course I would- no one really ever dies of a broken heart! But I imagine myself falling into the breakage, and being unable to crawl out because the chasm is so large.

The fear is partly based on family history- I have an aunt who lost a baby to SIDS when I was young. A few years ago, she lost another of her children in a car accident.

Lightning does strike twice.

They died on the same day, October 25, over 20 years apart.

October doesn’t scare me because of all of the Halloween decorations everywhere- it scares me because it reminds me that it can happen again. And because I have four living children- it could conceivably happen four more times.

I have to take hold of my fear- don’t let it overwhelm me. Don’t let it swallow me.

Pray.

When that doesn’t seem to be doing anything (from my end anyways), pray harder.

But I am still frightened.

I try not to let it consume me, but sometimes it almost washes me away. That is when I hold most tightly to my children. They don’t know it- how desperately I worry for them. How I have trouble sleeping at night, knowing that they are far away from me.

I have to actively distance myself from the worry. Every time that I allow my youngest son out of the house I must will myself not to follow him out the door. But I am watching like a hawk through the window.

That’s the problem with this type of loss. The type of loss that hits you like a sucker punch- babies aren’t supposed to die.

Except when they do- and who’s in control of that?

Where does prayer work in this equation?

I prayed.

Oh how I prayed, when I was pregnant with Beatrix- prayed for so many different things. None of the praying resulted in the answer that I wanted. None of the praying is evidenced by my baby being home. She died.

While I was writing this, I looked up the antonym of the word fear. Bravery was the most common of the choices.

But I am brave each and every time I allow one of my children to leave my side. My fear is not quelled. I think bravery is not the opposite of fear, but an appendage of it. You cannot have one without the other. Fear and Bravery are Siamese twins, joined at the core.

I am plenty brave and still afraid. It seems that the bravery required is in proportion to the fear I feel.

In dwelling on thoughts of how to conquer this fear, I turn again and again to how I am supposed to pray to a God who took my child? How am I supposed to come to Him in fearlessness?

I can’t.

I am afraid of Him.

I am frightened when speaking. I am humbled. I have lost control of the situation. Or rather, I have lost the illusion of self- control.

I am reminded that “every knee shall bow.”

I don’t like being in this position. I feel that not only have I been bowed at the knees, but there is a hand on my head holding me there.

I don’t like being humbled. I don’t like my life being in HIS hands

I want it in mine.

I want to be 100% certain that every time I say goodbye to one of my children, there will be a hello to follow at some point in the future- and a hello in this world, not the next. That’s one of those tricks of faithful people who don’t know this particular sorrow. It is so easy for someone who hasn’t lost to say, “you will say hello again- someday.”

I don’t like the trust that is implied in every beat of my heart. The day after day of a life slipped from my grasp. The trust that is required without my consent.

I think that trust may be the opposite of fear. And I no longer trust that my life will turn out the way I want it to. I don’t want to trust that this God who took my child has my best interests at heart.

We talk a lot about the purpose of suffering, as Christians.

We are sometimes given, as an illustration of God’s reason for suffering, the relation between gentle punishments of a parent towards a misbehaving child. If that’s the case, I feel like at some point, social services should have been called- someone else should have been involved in the decision making process. I wasn’t gently chastised and sent away to nurse my wounds, I was ripped open.

We are alternately told that suffering allows God’s glory to shine through us. Martyrdom- and make no mistake, this was a martyrdom- is seen as an admirable trait- but those old Romans were given options. I wasn’t. Well, I was, but I still would have lost my child- so I was given an option-less option. Maybe I wouldn’t have chosen to have God’s glory shine through me, if I had known that this unceasing fear would be mine.

I don’t want platitudes. I don’t want theological resonance. I want my daughter. I want my life back.

Or at least some reasonable explanation of why she’s gone. Something that I can grasp onto with a firm hold. I want the capability to nod my head, and say “a-ha- that’s what’s going on.”

I don’t want to have my choices in relation to trust forced on me. How desperately I have tried to adjust myself to this, and I just can’t.

I know that I need to trust… but with willingness.

Right now I am clinging to trust, because there really is nothing else to hold. Sometimes I don’t know if I am holding onto an anchor or a life preserver.

I only know that I am on the verge of drowning.

Sunday, October 16, 2011
3 Thank You For Visiting

Special Needs

Beatrix Elizabeth

Lately I've had something on my mind. A question which I've asked myself repeatedly since Beatrux died --

Am I the mother of a special needs child?

Have I got the right to call myself that?

Tonight I did. The words rolled out of my mouth flawlessly. But at the same time I was mentally berating myself. Telling myself that I wasn't really the parent of a special needs child. I don't know what it's like to change a feeding tube, or to have to fight for overnight nursing.

Because she died.

And my experience doesn’t count.

The original comment came up in conversation with a customer at the retail store where I work evenings. He was a young guy who was telling me about his plans to move to a big city. He just got his first “real job” working at a children’s hospital with special needs kids.

He was so excited. I kind of jumped in there -- I was excited for for him.

But I also wanted to make it real for him. I wanted him to see this opportunity as so much more than just a job. I wanted him to visualize how life altering his services would be for some family. I wanted to put in my two cents worth, as a parent….

But did I have the right?

We certainly spent more of my pregnancy expecting a baby who would have difficulties than one who would live life without the challenges associated with her differences. Had she lived she would have needed so much more care than a typical babies.

She was most certainly a special needs child, and I am most certainly her parent -- but am I the parent of a child with special needs?

I’ve gone back and forth about this and I can’t decide.

I am her parent. But does carrying her qualify as parenting?

I can tell you the ins and outs of the different medical specialties. I have a long list of doctor’s names that I saw…. Does that qualify me?

Does knowing the names of the rare and lethal defects that other mothers carry with, and being able to talk to them about it make me the mom of a special needs child?

Am I just an interloper into this game?

Because I didn’t have to work with therapists, tubes, and wheelchairs.

Because she never came home.

Where does that leave me in this equation?

I know that in relation to her, I am not the mother of a “normal” child (whatever that means.)

So, can anyone tell me- am I the mother of a special needs child? Are any of us who choose to carry to term with these awful anomalies?

I think sometimes, I am the one with special needs.

I need to have acknowledgement that she lived, and her life was worthwhile. That all of this pain and suffering is valid and useful.

I grasp on to this title, because it allows me to be a part of a bigger group of people whose babies live.

But do I deserve it?

Thursday, October 13, 2011
1 Thank You For Visiting

Dancing in the Snow

Baby Loss

Sunday, October 09, 2011
3 Thank You For Visiting

Death Barged In

Beatrix Elizabeth

Sunday, October 02, 2011
0 Thank You For Visiting

Too Many Shoes

Beatrix Elizabeth

Thursday, September 29, 2011
0 Thank You For Visiting

Missing Peace

Baby Loss

Sunday, September 25, 2011
1 Thank You For Visiting

Choosing Hope

Constructive Grieving

This is an entry for Small Bird Studio’s Blog Hop. The subject is “Hope”

I enjoy blog hops, because they stretch my mind muscles a bit. I am still writing as “me”, but because the subject is dictated, I end up exploring aspects of “me” that I may not always pay attention to. They also help to push me out of my more figurative style of writing. It can be interesting and frustrating, but in the end, the blog hop blogs usually end up being full of gratitude. I like that- being able to express that other side of the grieving process.

So- Hope.

At first, it seemed like I had too many choices to make- there is so much to write about when it comes to the subject of hope. Where to begin?

One idea I had, was to write about this:

“He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.” Rev. 21:4

There is a scene in the movie Titanic. The ship is sinking, I mean, it’s the end- anyone who isn’t in a lifeboat by this point, isn’t going to make it. There is a priest standing at the top of a hill of people. Chaos is all around them. They are crying at his feet, reaching up to him. He is delivering the Last Rites, and at this point, the sea and the sounds of humanity become almost inaudible, as he reads this verse.

It is a stunning piece of visual imagery.

I haven’t seen the movie in years, and my imagination may have added some small elements to my memory. The idea of what I recall in this scene tugs at something so deep in me that my heart literally aches with emotion. The Gospel message was displayed very powerfully here- the {hope} that these people had, in this stunningly silent portion of this film awed me. The {hope} that the Salvation story was true- that even though their lives were ending here, something infinitely more glorious was waiting for them on the other side of the dark veil.

But… that’s not what I want to write about.

Another idea I had, was to tell you all about the study that we are participating in. It is a national study to help figure out why babies are affected with certain birth defects.

It was extremely difficult to help with this study. While anyone who hasn’t been in our position may believe that we would feel good about helping people out, the researchers go into great detail about your life for the year prior to the birth of your child. Not only did I have to answer some personal questions about my Bea’s short life in the womb, but I also felt the self- recrimination begin.

They asked a number of pointed questions about certain foods (cereal, bread) that I don’t eat- how much I ate per day, etc. They asked about my work environment, medications I may have taken, if I had a cold at the beginning of my pregnancy, etc. These may seem like relatively benign questions.

When you are racked with guilt, the questions become accusations.

If I ate cereal, would I now be enjoying a slobbering, toothless girl? Would I be too tired to blog because she would be keeping us awake at night?

But in the end, it was so worth it because we are helping to contribute to knowledge- maybe someone, someday, will be helped with our knowledge. Who knows- maybe one of you?

So, I {hope} that this study can bring some good to someone, and help women to grow more healthy babies.

But…. That’s not what I want to write about either.

I could write about the {hope} for another child, at some point… but I am of “advanced maternal age”, and my husband is almost a decade older than I am. So, we’ll just say that most of our {hope} for a new baby to love is invested in our adult children.

I have learned to be cautious in my hope for children. I haven’t held a baby since Bea was born. It would just bring my {hope} into a dangerous place of want.

So I will not be writing about that.

I think what I am going to write about is choice. The choice to hope.

The subject matter of the blog hop was actually more along the lines of “what has brought you hope this week”. All of the above apply, but this gave me pause:

This, gave me hope this week. It made me think a little more deeply about the choice we all make to hope.

Hope is making an active decision to believe in something that may or not happen- but to believe with the expectation that it will. To believe in the positive outcome-positive being relative to the person doing the hoping- of a situation.

When people lose all hope, they have allowed something precious to slip out of their hands. Something fragile is gone. Without hope, the impossible will never happen- and miracles become extinct.

When looking at this flower bud, please understand that this photo was taken today, September 22, 2011, in upstate NY. It is cold here. Fall is fast approaching, and winter with all of it’s coldness will soon follow. Most of the leaves have begun to change colors. The summer flowers are dying away. Here and there you see a bright burst of color as people set out mums to hold onto the growing season for as long as they can.

Soon, everything except the evergreens will be dead.

It is no time for flowers to begin to bloom. But these are.

They are morning glories. When I took the photo, I had no idea when their normal blooming season was. Since then, I have found that it is perfectly normal for them to be blooming this late into the fall. It was a bit disappointing, as I thought I had found the perfect subject to write about, as far as something that inspired me to hope this week.

The little flower that could. But this little flower always does.

So, what is this supposed to say to me? What deep and meaningful message is hidden here, in this late blooming flower? This flower that blooms on instinct at a time when most flowers are dying away?

I don’t know.

Now, you may read this, and think- “she missed the entire message!”

I was so excited to see these tiny buds, thinking it was an “a-ha” moment. But it wasn’t. It was just an ordinary flower, on an ordinary day, doing it’s ordinary thing.

But now, as I write this, I think I’m selling myself short. There are a lot of things I could attribute to this flower- I could make it a sign of something. A fetish of sorts- it does seem kind of symbolic- a flower that blooms in the cold wet fall.

It could also be that idea that sometimes things are different- that even flowers sometimes march to the beat of a different drummer. That even babies that don’t look so “normal” when they are born, are still part of the whole big picture.

Maybe the “message” was less about the season, and more about the flower itself- a morning glory. Or about the color of the blooms…

Again, I don’t know.

So, this is what I will write about hope this week.

There is no special thing that teaches us to hope. There is no symbol that makes us believe in the impossible. This flower was not a symbol of awakening like I thought it was.

It’s better than that.

Hope is normal. Hope is average. Hope is just an everyday occurrence for all of us who want to grasp it by the tail and hold on for the ride.

Hope is part of the human condition that has been pummeled out of us by negative experience.

We don’t need symbols and signs, in order to have hope.

Hope is the difference between childlike innocence and adult cynicism. When hope is lost, cynicism is what takes it’s place.

Hope grows where it’s planted.

It is a choice to reject the way that things seem to be, and to believe in the goodness of what life has to offer- every day. Hope isn’t about one specific thing- in the sense of “I hope I get that job,” or, “I hope he asks me out.” It is about everything. The natural rhythm of your life. The way you choose to greet each day. I choose to greet each day with my joy.

Hope is everything you thought you couldn’t feel any longer.

Hope is always looking to the future. Always looking forward, instead of backwards.

Hope is the companion of Joy.

And of Love.

And of Peace…..

Hope is the twin sister of Gratitude

Your gratitude is expressed in the way you choose to greet each day.

I am choosing to greet each day with my joy, as tenacious as those vines. Barely clinging, fragile and easily crushed.

Blooming when you least expect it.

What will you choose for today?

1. real beauty	2. My Angel Baby. . . . Aiden William
3. From Under the Weeping Willow	4. Finding My New Normal- hoping for a rainbow
5. My Hope Endures	6. nicholastouch. blogspot. com
7. On Choosing Hope	8. The Croley Gang
9. Heaven Is For Real	10. Through Grey Skies
11. Message 4 Mommys - Where is my hope. . .	12. Our Breathtaking Life
13. She Brings Joy/Choosing Hope	14. Hope

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1. real beauty	2. My Angel Baby. . . . Aiden William
3. From Under the Weeping Willow	4. Finding My New Normal- hoping for a rainbow
5. My Hope Endures	6. nicholastouch. blogspot. com
7. On Choosing Hope	8. The Croley Gang
9. Heaven Is For Real	10. Through Grey Skies
11. Message 4 Mommys - Where is my hope. . .	12. Our Breathtaking Life
13. She Brings Joy/Choosing Hope	14. Hope

This linky list is now closed.

What is a blog hop?
Get the code here...

Linky Tools | Linky Blog 2013

1. real beauty	2. My Angel Baby. . . . Aiden William
3. From Under the Weeping Willow	4. Finding My New Normal- hoping for a rainbow
5. My Hope Endures	6. nicholastouch. blogspot. com
7. On Choosing Hope	8. The Croley Gang
9. Heaven Is For Real	10. Through Grey Skies
11. Message 4 Mommys - Where is my hope. . .	12. Our Breathtaking Life
13. She Brings Joy/Choosing Hope	14. Hope

This linky list is now closed.

What is a blog hop?
Get the code here...

Linky Tools | Linky Blog 2013

Thursday, September 22, 2011
3 Thank You For Visiting

Good Company

Baby Loss

So, I wanted to write about the good days.

I want to write about the sun so bright it shocks me out of my pain and about the magic in holding my son's hand.

I want to write about my husband, with his stillness in this storm. My husband who has lips so like hers that when I look at them I die a little inside.

I want to write about the sunsets, and the long walks and about how my life is altered, but how I am going on. How I am living for today. I want to write about how it is getting better every day. About how God is carrying me through this. How my faith has been strengthened and how I am telling the truth when I speak of the joy in holding her for a few short moments. She was a joy.

I began this as an almost sarcastic list of all of the lies that swirl around my head. All of the points where I feel sorry for myself, and I lament my loss. I began this in order to tell you that there really are no good days in this post-Beatrix world. That there is no happiness, and that faith, for the time being, is slowly creeping out the window,

But I got stuck at that last little bit.

My God- that God who caused this thing to happen to my child. The God who gave her this- who gave me this. That God. In all of everything that I have been thinking and doing. In all of what I have emoted and kept quietly within me, I have never once doubted the existence of God. I have never once thought, there is no God who could do such an enormous thing to me. Who could snatch away what was mine, after only letting me hold it for a short, sweet moment.

I have been angry. Oh so very angry. There is no room sometimes for anything else but the anger.

But anger is not disbelief.

I have called out, and not felt Him near me. While “Footprints” is a lovely poem, and a sweet sentiment, there are times when I have felt so removed from Him. My grief has been like some wide chasm. I have been left panting for relief. He has not been walking, carrying my burden easily through the sand.

But distance is not disbelief.

I have allowed myself to sink. To sink so slowly that the quicksand which is grief feels like a hot bath. So warm, so inviting. I sink in and I just want to go further. Let the liquid cover my head, suffocating me. Let it leave me breathless. Sand filling my mouth- how tempting to let this be my end. Loosened in that feeling of total abandon.

But sinking and hiding are not disbelief.

I would like to give some smart remark to fix this in my mind. Some way through this where I come out sounding like one of those women who get beauty from ashes. I would like to avoid being seen as the raging maniac that I’ve become. I would like to be packaged up in a neat box, with wrapping and a bow. I can fit in the Christian grieving mom spot. I can fit in the “I know the Lord is working a great plan in me” spot.

I’m tired of pretending that it’s the spot I’m in.

But being tired of being faithful is not disbelief.

The good days consist of being able to put one foot in front of the other. The good days consist of being able to laugh with my child without imagining him playing with a younger sister who never made it home. The good days consist of understanding, somewhere in my fuddled mind that life does go on. That happiness is never going to be complete here. That serenity is a quality I may never again possess….. that joy has to be sought out. It hides. Most people don’t realize that.

In between those moments that take my breath away with their fragility, I rage and argue and bargain with God. I question Him. The good days consist of acknowledging that while I argue with and rage at a God who takes children from their mother’s arms, so did Moses argue. Jacob wrestled. Jonah disobeyed. Mary questioned.

I am in good company.

Sunday, September 11, 2011
7 Thank You For Visiting

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She Brings Joy

Sick

Spoken word retake....

Spoken Word Blog Round-up

Your Lovely Hands

The Contender

Absence of Fear

Special Needs

Dancing in the Snow

Death Barged In

Too Many Shoes

Missing Peace

Choosing Hope

Good Company

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