Another Baby {Choosing Life: Chapter 1}

November 2009

She didn't know for sure why after eight years she thought she wanted another baby, but the thought had crossed her mind numerous times over the past year. There were many things different now than when they had kids before. She wasn’t working. And she was getting bored. She knew her husband would be for it.  And her two boys were always saying they would love more siblings. So why not?

At 39, she went for her yearly “check up”, and her nurse midwife said something like, "If you are thinking about it, do it now before you are 40.  The odds of something going wrong go up so much after 40."

“Oh my gosh, I’m running out of time!" Plus, she thought, she could do so many things differently this time.

For one thing, they might have a girl! And she wouldn’t be working, so she could spend all that extra time taking her baby on walks, reading to her, teaching her all those extra things her other kids didn’t know before kindergarten. It would almost be like having an only child. They could be joined at the hip. She would do all the things she either didn’t do right or allow herself do with the other kids. She would feed on demand. She would nurse until the baby girl bit her. She would hold her as long as she wanted to. She would rock her until she fell asleep. She would get one of those wraps that holds the baby next to the mother all day long....

{Choosing Life: Chapter 2}

Whispers and Whistles

She literally thought she could just skip past the holidays as if they were just another day this year - as in - not participate. Thanksgiving came and went. She’d made a turkey and had family over, but, in a way, it was just another meal. She didn’t decorate. She didn’t make homemade rolls. She didn’t make homemade pies.

Everything is different this year. She now lives in a different state, in a different house, with a different climate, goes to a different church and has different friends. She and her husband relocated their whole life in hopes of more healthcare options for “the baby” as well as the hope of extra help from relatives living close by.

Shedding and falling apart, their tried and true Christmas tree didn’t make the cut during the move. All they had left of their Christmases past were old decorations, collections of photographs and fading memories. And now, she just didn’t feel like creating new traditions or decorating a new tree. This is not her home. This is not her real life. So when her husband insisted after Thanksgiving that she put up a Christmas tree, her heart balked at his request.

Just over three years ago during a routine ultrasound, they found out their anticipated third child had severe brain damage later described as a Dandy Walker Malformation as well as numerous physical anomalies. They were given the worst case scenario. First they were told he wouldn’t live to be born, but if he somehow survived birth, he would only live for minutes, hours or days. They were encouraged to abort. However, unable to murder their own child, they proceeded with the pregnancy encompassed by prayers of family, friends and even strangers.

At the time of his birth, they only stipulated that he would not be put on a breathing machine. If his brain and lungs didn’t want to work, then they would accept the outcome.

But he breathed. A shallow whisper, a wheezing whistle, the breath of life.

Thus began her journey as a “special needs mom to a medically complex child.”  A club she’s hated and resented being in. A club no one ever wants to join. And somehow, here she is, almost three years later, still in the club. While getting easier to accept, she wouldn’t wish it for anyone. But she also wouldn’t go back and kill her child to avoid membership. So everyday she feeds him through a g-tube inserted into a hole in his stomach, monitors his shunt placed for hydrocephaly, gives him medications for seizures and reflux, transfers his level 5 CP body from beds to baths to floors to wheelchairs, and drives him all over the city for therapies and doctor appointments.

Life has been an adjustment. She’d hit some lows this past year, really questioned everything. EVERYTHING. But finally, while everyday is challenging, it's not as upsetting. And while hard at times, she was trying not to question anything or wish for anything to be different and just live.

They go to Home Depot. She picks out the least expensive tree she can tolerate. It isn’t perfect, but at least they have a Christmas tree to satisfy her husband. Preloaded with lights, all she has to do is assemble and plug it in. She thinks she is done until her husband informs her he expects it to be decorated. She finds three boxes that are marked Christmas and forces herself to hang the old ornaments. It takes her all day not excluding a few tears as many ornaments remind her of a simpler life before “the baby”.

When she finishes, she realizes she doesn’t have an ornament with the baby’s name on it. Somehow he hadn’t made it into the life they once had; traditions had been put on hold; time had stopped. She starts to feel sad about this until, for some reason, the discovery gives her an idea. Beginning as a shallow whisper, a wheezing whistle, a tiny breath, she begins to feel more excited about the season.

Shopping for an ornament means she has something to look forward to, something to add this Christmas that will symbolize their new life here in this new place, something that could tie them to this house and help it become a home, something that would become part of new traditions, and something that would include their precious little boy miraculously approaching his third birthday.

(Originally written as a guest post at bethmorey.com, now sheofthewild.com)

Epic Fails

What do you do when you can't seem to get anything right the first time anymore? I feel like I'm having too many FAILS these days and keep having to go back and redo and correct things. I thrive on being successful at things. I won't usually attempt if I think I might fail. And now the things I'm normally confident in doing are failing. Nothing is within my control. What's wrong with me?

Elusive Freedom

What do you do when you look around and see other people living out what you thought you would be doing by now?

What do you do when you realize you might not be as interesting or talented as you once thought?

What do you do when you keep thinking eventually things are going to change and they never do?

How can you feel alone when you are surrounded by family and friends?

I have no idea.
I'm feeling very unsuccessful today.
I feel lost. And sad. And alone.
And uninspiring. I think I once wanted to be inspiring.
I don't know what I want anymore.
Maybe nothing.

What would happen if I didn't pursue or yearn for anything?

Would that be the elusive freedom?

A Breakthrough In Group

I've decided to post this here as a reminder to myself, a sort of looking back, building an alter, and thanking God. 

A meeting with my pastor was set up by my husband after he witnessed a day of despair in me where I spoke openly of giving up, not that I think I would ever actually do anything more drastic than talk, but apparently enough that he felt I needed more help than he could give me. This is the email I wrote my pastor several days later:

"I've been wanting to share with you something that came from our meeting. It was a very exciting "revelation" for me, if you will (or as I've been calling it "a break through in group"), and I shared it with my husband after a couple days thinking about it, also telling him I was going to email you too. 

I wanted to write my thoughts down to document them as well as let y'all be involved in reminding me because I know Satan will try to get me to forget and go back to my old way of thinking. However I kept putting off writing, and now I'm starting to have to fight to remember. The old voice in my mind, and unfortunately, [a family member's] voice are still strong and continue to try to convince me otherwise.

What I found so freeing (literally, in a mountain top high kind of way) came from our discussion about our personalities, and being reminded that I had always identified most with the melancholy trait. However, I had always thought of it as the negative trait (as I think society does too since it tries to medicate everyone who feels deeply), and I have wished, prayed, and tried hard to be one of the others. 

But then you pointed out that David and Moses had melancholy personality traits, and I've been mulling that over ever since (I really don't remember much else that we talked about that day). If God loved David and Moses and was able to use them despite the melancholy trait then perhaps that trait is not a curse after all. 

Unfortunately, I have been told and the seeds have been planted since I was a kid that "depression runs in our family" and "I pray you don't get it" and "you'll probably need antidepressants like I did" and "I hope your kids don't get this". I have believed that the deep sadness and/or angry emotions I feel over circumstances and injustices is wrong and is a sickness. 

But now, I believe that God is revealing to me that that is a lie (and yes, I'm almost crying as I write this b/c it saddens me so much that I have spent so much of my life listening to these curses whispered in my ear). He made me this way, and it is a blessing and a gift, not a curse. If I were to write poetry right now, Psalm 18 (specifically the Message version) would sum it up.

So there you go. You may have had a totally different direction you thought you were leading me, and there is probably more to be gleaned from future discussions, but I believe the Holy Spirit led you, whether consciously or unconsciously, to say those things to me. So, thank you."

"The hangman’s noose was tight at my throat;
    devil waters rushed over me.
Hell’s ropes cinched me tight;
    death traps barred every exit.
A hostile world! I call to God,
    I cry to God to help me.
From his palace he hears my call;
    my cry brings me right into his presence—
    a private audience!" Psalm 18:4-6 (MSG)

Queasy

Her stomach keeps doing flip flops. Since last week's decision, they've made an offer on a house and have signed a contract. Next week will be the inspection and appraisal. They've spoken with a realtor and will be putting their current house on the market soon. Things are moving so fast now. She's excited and scared at the same time, making her stomach queasy.

She felt the same when 21 years ago, she and her husband decided to go ahead and get married within a few months of getting engaged instead of waiting three to four years until they graduated from college. She remembers lying on her a parent's living room carpet, listening as her parents and future husband discussed the possibility of not postponing the inevitable.

The waves come and go. The panic is kept at bay if she keeps busy, taking the steps necessary to accomplish the final goal. Or when she sleeps. But it floods over her when she just stops to rest or lets her mind dwell on the seemingly overwhelming task of getting everything done.

Sleep

Lying down the weight of the world sinks into the mattress.

Heavy. Release.

Her eyes close as images from light fade into darkness, her mind still yammering.

Escape. Disappear.

One thought over another overlap in a complex myriad of consciousness.

Constant. Noise.

She pulls a blanket over her body as her temperature begins to drop.

Warmth. Softness.

The blessed numbing fog begins to wash over her as her inner voice fights for one last word.

Shhh. Sleep.

A Winter Morning

It's completely quiet now. She has turned off the sound machine and the ceiling fan. The room is gray with the morning winter light. She stands over his crib watching him sleep, waiting for him to wake. 

His breathing sounds fairly clear, just hints of something that might need to be suctioned. Every now and then his arm jerks up to his face and hits his mouth or nose. She wonders if he is intentionally trying to touch his face and yet failing because of his lack of muscle control.

It's been two years now. Two years since her life and the life of her family changed forever. This baby, yes, they still call him "the baby", born with a Dandy Walker Malformation, undiagnosed as to the reason why, is still alive. His mother tries not to think back to the past, a time before g-tubes and shunts, doctor visits and therapies, risk of aspiration and pneumonia. A time before the baby. But unfortunately her mind often goes there anyway. She is getting better at not doing that, working towards living in the present, but finds it challenging.

He stirs in his crib, little moans and stretches, sounds of waking. The arm spastically hits his face repeatedly now as he tries to move around. She goes to his side and gently lifts off each blanket one by one. He looks at her and tries to focus his grey-blue eyes.

"Good morning, good morning, doot doot doot doot doot...", she sings. Their morning ritual begins.

Winds of Change

Another cold winter day in Montana. The sun is bright for a change, but the temperature is down right frosty in her opinion. No desire to venture outside for errands or entertainment so she spends another day either playing with the baby on the floor or browsing around on the computer on the couch. Occasionally she gets up to get the older kids food or to do a chore because she knows she should, but it's hard to get outside of her head.

She thinks too much. Her mind is a steady stream of noise that won't stop. Not even for a second. Her thirteen year old son tells her boys have a "nothing box" where they go in their minds and think about absolutely nothing. She googled that because who can trust what a thirteen year old says, but according to the internet, he's right. Girls don't have one. And that sucks. She wants one. No, she needs one.

Change. She hates change, but it's coming. This past weekend she and her husband have decided to "go all in" in a direction they believe God has been leading them. They have had hints of how it might work out, but kept putting off the decision, waiting for "doors to open".  They had one foot here and one foot there with lots of contingency plans to back out at any minute.

"But what more information do you need?" her brother, who also happens to be in the counseling business as an associate pastor, asked her husband. "God is leading you to do something so my advice is to do it - I keep getting the feeling while we are talking that God is telling y'all to 'go all in'."

Crap. That is scary as all get out. But in some sense, once they made the decision, she felt waves of relief. Relief to finally have a direction, to be off the fence. It fits into her desire to learn to live in the present, not five years in the past or five years down the road, but the now. And she can do a direction. Set her mind on a goal, problem solve, make it happen.

But that doesn't mean she likes it.

Change, that is.

Sorrow and Suffering

"...God knows in great detail the devastation caused by tragedy. He understands the pain and sorrow acquainted with grief and loss. He understands because He is all knowing. Furthermore, Jesus endured suffering (see Isaiah 53), and experienced pain, even the pain of feeling abandoned (see Matthew 27:46). And because God is with you always, He knows that you are hurting. He sees your pain, and hears the cries of your heart. You are not alone in your suffering; He is there for you..."
(God Has Not Forgotten You A 31 Day Devotional)

In response to a prayer request on my little boy's FB page, a friend wrote "May The Lord heal him in His time, and may you remember the suffering he does on behalf of those souls in need."

I am pondering what "the suffering he does on behalf of those souls in need" means.  It may just refer to a Catholic belief regarding purgatory that I don't understand, or it may refer to the fact that in the midst of his suffering, God will use his story to bring others to Himself?

Hmm. I'm not sure I'm unselfish enough or love others enough to take comfort that his suffering could aid another soul.