Another Baby {Choosing Life: Chapter 1}

{Choosing Life: Preface Part 2}

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 for a past deliverance. 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.

Overwhelmed With Information

Beginning around the first of October, I began to notice that I felt very calm about things. I wasn't as emotional and it all felt very peaceful.  I don't seem to feel the need to blog when nothing is churning in my mind.

But now all the old feelings seem to be creeping back up on me. I'm so overwhelmed with information and tasks to do for the baby. I come across new things constantly on the special needs forums of things to try that work for others. I have advice and suggestions given to me by therapists and friends.

How can I possibly learn about and try every little thing that others suggest? How do I pick through them? Do I try everything? Do I try a few but risk missing something? How do I know what supplements to try and how do i get them all into him as well as what little food I'm getting in?  How do I know what therapies are working? How do I know when to throw caution to the wind and spend the money to get alternative therapy that sounds promising? How do I weight that with my other kid's needs? How do I fill out all the forms for potential reimbursement?

I just want to give up!  It's just too much!  And now all I want to do is cry.  I keep feeling like I'm living some else's life or one day I'll wake up and find it was a bad dream...

Mulling

I always have stuff that I am mulling around in my head. This is just another one of those topics that I have been thinking about for quite some time now (let's say around two years).

I think because we cannot always answer hard questions like "Why did this happen to me?", Christians have come up with benign cliches, perhaps taken from scripture out of context, that we say to each other in an attempt to explain away the tragedy, sickness, and loss we may still experience even after we have accepted Christ's redemption for us on the cross.

"God has a reason for this..."

"God chose you to be a "special" mom..."

"God will only give us as much as we can handle..."

But I don't believe these statements are benign at all. In fact they give the impression that God causes tragedy, sickness, and loss for our good or so we will grow closer to him. It seems Christians accept and almost embrace the ick that happens to us as a blessing rather than a curse. But we know the difference between blessings and curses because many are listed in Deuteronomy 28.

So I don't know if tragedy, sickness, and loss are from God to teach us a lesson. Maybe they were under the Old Covenant - before Jesus, but we are under the New Covenant - and Christ redeemed us from the curse. Maybe God might allow things to happen and will bring about good for His own through them, but I don't know if He causes them to happen. I wonder if its all just a result of living in a fallen world, results of our own actions, or maybe Satan asked God permission to sift us like wheat. I wonder if we should hate these things and draw on the power of the Holy Spirit given to us by Jesus to rebuke/resist these things while in the midst of turning to Him for healing and restoration.

Christ redeemed us from the curse of the law by becoming a curse for us, for it is written: “Cursed is everyone who is hung on a pole.” He redeemed us in order that the blessing given to Abraham might come to the Gentiles through Christ Jesus, so that by faith we might receive the promise of the Spirit. Galatians 3:13-14

Just thinking out loud...

Ick and Fear

Sometimes I wish I didn't have access to so much information. I mean, there is only so much time and energy in the day to deal with the stuff in front of me (or in my head), much less to take in and deal with the stuff happening all over the world, or in my own city or neighborhood even.

I can't believe how much ick is out there. It's downright depressing. My self-centered nature just wants to hide.

But others don't.

How in the world do people even get it into their heads that they could make a difference in the midst of it all? Do they not have that voice telling them that nothing they do is really going to matter anyway; that no one wants to hear their opinion? Are they truly not afraid of criticism or being wrong?

I'm amazed when I randomly jump from blog to blog how many things people can believe in passionately from politics to social issues or whatever. And often the things they choose to speak out about aren't necessarily things I would agree with, but just the fact that they believe in it and feel the need to address it publicly is amazing. It's impressive and overwhelming that they are willing to take on more than what is immediately in front of them; to go beyond their current little sphere of influence; to think that what they have to say or what they think might make a change; to risk getting on a soapbox and be seen and heard.

And I'm afraid to even put my name on my blog when I am blogging about virtually nothing.

I hate fear.

Normal vs. Special Needs Fussing

She sits there watching him, willing and telling him to "use his hands" to get a toy. They lay at his side. Sometimes his arms jerkingly raise towards the item and his hands grasp at air only to fall again back to his sides. And then he screams and fusses.

Or he is chewing/sucking (not quite sure which) on his teether which is built like a pacifier. The only teether they can use for him since he is not able to grasp and hold something to his mouth like a regular teether. It falls out. Upon noticing (noticing is good, right?), he wildly swings his head back and forth, screaming.

Or he is on the floor, trapped there by the sheer weight of his over-sized noggin. Unable to lift his head off the floor, he screams and struggles with great effort sometimes to change positions. And if by chance he makes it onto his stomach, he's stuck. Glued in one position until someone rescues him.

Her ears have been bleeding for the last few days from the sound of the baby's (20 months old now) fussing/crying. It can be incessant. Never-ending. Grating. And she sits and wonders if this is "normal" fussing or "special needs" fussing. Because if it is "normal" (which at 20 months it could be), then she can endure it. It will end someday like it did with her older kids. He will eventually be able to communicate his wants and needs, and he won't have to resort to fussing and crying.

But what if it is "special needs" fussing. What if he will never be completely able to convey his thoughts and feelings? What if he actually knows what he wants to communicate, but can't? What if he feels trapped forever? What if the incessant, never-ending, grating fussing and crying continues for, well, the rest of his life?

So how do special needs parents stay sane through stuff like this? She knows she's not the only one out there experiencing this, although she may be the only parent selfishly asking the question.

How do I endure?

Courageous, Brave and Fearless

Who writes and doesn't envision themselves as one day being published and all the world appreciating their amazing ability to put into words an experience, feeling or observation that others can relate to? Words that conjure up emotions or empathy. Words that spur others to take action.  Words that inspire. Words that are honest. Words that make you think. Words that make you want the writer to write more.

I've wondered if I could be that kind or writer. I've wanted to be that kind of writer. I've tried to be that kind of writer.

Am I even allowed to admit this out loud?

In the past couple days I have tossed around the idea of submitting something to a local magazine.  Maybe the story of our baby, maybe something else. And then there are the voices of fear - rejection, criticism, failure. And I don't do it.

Stupid, I know. To listen to these voices. Which is why I had to write about them. Perhaps if I name them and point them out, they will relinquish their hold on me. Perhaps I can be courageous, brave and fearless instead.

That's what I really want to be.

The Rain Came Down

DH woke up last Tuesday morning at 4:30 with intense chest pain. Got up and tried to walk it off, see if it was heartburn or something. The pain got worse and brought him to his knees. He got dressed and woke me up and told me to get dressed, get Michael (12) down to take care of the baby, and we were going to the ER. By the time we got to the hospital, the pain had subsided so we debated whether to go in. Decided might as well since we were there and the pain was back by the time we got to the check in desk. He was in intense pain the whole time they were getting vitals and history, etc. Gave him baby aspirin and then a nitro. The pain subsided briefly, and we were rehearsing the verses we were memorizing together.

“Therefore everyone who hears these words of mine and puts them into practice is like a wise man who built his house on the rock. The rain came down, the streams rose, and the winds blew and beat against that house; yet it did not fall, because it had its foundation on the rock.”  Matt. 7:24-25 NIV1984

The pain came back with a vengeance. Second nitro pill and then a nitro drip did not stop it. Cardio doc showed up and was examining when DH's heart rate shot up over 200 and then went into v-fib. Doc called for cart. They told me to leave and they paddled him once and got his heart back to beating more normally. They then rushed him upstairs and he got a stent within the hour. He spent one night at hospital for observation, mainly watching the stent entry site down near his leg for problems. He came home on Wednesday and is supposed to rest for a week before returning to normal activities. He had one 100% blocked artery which they were able to get 100% open. Since he got to the hospital so quickly and the major stuff happened there, the doc thinks his heart muscle is just stunned and should completely recover. God has taken care of us. I believe He was responsible for waking DH up in time. They said if it had happened at home, he probably would not have survived for 911 to get there in time.

Hope

Now see, so far today I feel like I'm on the downhill side of a lot of these ugly feelings. Like things are going to get better.  Is it the sun shining outside that causes this? Did I eat differently yesterday? Did the baby not puke today (actually he did, but not very much)? In my half-assed attempt to stand on the Word and trust God, did something finally click with me?  Did I get an extra dose of peace this morning b/c God feels sorry for me?

Is this hope?

Special Needs Forums

The special needs forums and Facebook groups try to build us mom's up by constantly telling us how special we are. That we are hardworking, tenacious, advocates for our little ones.

Unfortunately, I know better.  I'm not like a lot of other special needs moms. I don't see how they find the time and energy for anything beyond taking basic care of the child/ren. I have probably the minimal amount of therapists involved, and I try to avoid the doctors if possible. I hate paperwork and phone calls. I'm not trying to start any support groups or foundations to bring awareness and acceptance to my child's disabilities. I'm just trying to survive the day to day and keep him alive and happy.

So when I read those little quips? I just end up feeling guilty.

Peace

I have virtually nothing in my head to unload right now. Nothing majorly traumatic has happened in the last few days, nothing that has gotten my emotions in an uproar.

Is this what peace is?

Tired of Me

Selfish life. Selfish thoughts. Story of me.

I get on here to unload all the awful thoughts going through my head, and then I just end up sitting here feeling guilty and unable to confess them.  It's too embarrassing. The things that go through my head.  The things I know I should be believing and thinking vs. the things I actually think.  I wake up everyday day praying for a new outlook, praying and expecting healing and progress - for my thoughts and the baby.  But it doesn't take two minutes of just listening to the things around me, specifically when the baby is struggling, to bring me back to "earth".  I am starting to hate earth.  I must be one of the weakest humans because it's too hard for me.  I'm tired of crying everyday. I'm tired of sickness and disabilities.  I'm tired of therapists and doctors.  I'm tired of other people's pity.  I'm tired of me.

I'm tired of when I'm in the midst of my pity party, the baby will laugh at something and make me feel even more guilty.