Untethered

I've had a rough day.  Between witnessing the baptism of two adorable baby boys at church this morning--which reminded me of the two times we tried and failed to do the same for Patrick--and the realization that friendships have changed--resulting in feelings of loneliness and not belonging--I have just felt like running away and starting over.  Fortunately, I had someone who could talk me down from the proverbial ledge and got me through the worst of it.  And then I did what I do best--processed through writing.  Here, without further comment, is the result.


Untethered

I tried to put down deep roots.
I thought that they were strong.
Until the wind uprooted me,
And taught me I was wrong.

Like a kite, free of its flyer;
Like a tent, with pegs pulled free;
I have become untethered,
From the life I built for me.

My thoughts are unrelenting,
Regardless of their truth.
I hope things will get better,
Although I have no proof.

So, with a faith that's shaken;
With a heart shattered and frail;
I try again to take root,
Before the next wind gale.

On Grief, Metamorphosis, and Self-Excavation

What with my own personal grief; seeing friends in pain with various losses and grief of their own; feeling like things in the world are getting worse rather than better; not to mention the whole snow/winter/cold yuckiness that is January in Michigan, I am overwhelmed with sadness and despair.  I am done.  Empty.  Spent.  Broken.  I have nothing left.  It's not that I don't care.  Rather, I care so much that I have no energy left to care at all.  I am tired of being a responsible adult.  I want permission to be weak, but then rage against any perceived weakness as a failure of the strength label I pridefully own.  I want to run away for a while.  Explore the world.  Excavate me.  But I can't.  Not yet, anyway.  I have made too many commitments.  Obligations.  Maybe later.

I am tired of worrying all the time.  Tired of being afraid.  What is this weird new bump on my finger?  Is my extra weight killing me?  Are Mira's pressures getting worse?  Am I a failure for having a messy home?  Have I failed my family?  My spouse?  My children?  Do I worry too much?  Is it depression, or grief, or both, or neither?  All this worry sucks was what little energy I manage to acquire.  Ain't nobody got time for this.  Where is my joy?  What happened to the woman who could do anything she set her mind to?  Who achieved so much educationally, professionally, personally?  I miss her.  I need more smiles.  More hugs.  More laughter.  More beauty.  More stillness.  More free time.

As an introvert, I need time away.  But I am already so isolated; so alone.  Being out in busy places with people I don't know just makes it worse.  I need one-on-one time in quiet, familiar places with just a few people who can help fill my energetic bucket.  Who won't judge me.  Who don't care how I look.  Who don't have a vision of me that will shatter if I name my truth.  Who can take me away for a while.  Who can bring me back to to myself.

I need help.  I don't know what kind.  I just know I don't want to hurt.  I don't want to cry when I see babies.  I don't want to envy someone else's life.  I don't want to be alone.  I don't want to feel overwhelmed.  I don't want to feel different, or unworthy.  I want to feel connected.  Loved.  Valued.  Valuable.  Worth the space I take up.  But not because other people tell me so--that can be taken away.  No.  I want to know it to be true, deep in my bones.  Know it with every breath.  Feel it.  Remember it.  I want to be so caught up in the joy and love of my life that I am not threatened by what others have; what I don't have.  I want what I am and what I already have to be enough.

How do I get there?  What must I do?  Excavate me?  By making time?  By making me a priority?  By making me an obligation?  Oh.  I guess that makes sense.  How can I feel worthy and valuable if I refuse to value myself enough to make time for what I need?

This is where I am going.  Do you want to come with me?  It's okay if you don't.  I just can't stay stuck in this hole anymore, trying to find happiness in food, stuff, and other people's validation.  I can't stay the same, even though I don't know what I will be when I come out the other side.  Change is scary and difficult.  It hurts.  But, quite honestly, it hurts to stay where I am, too.

I can't promise that you'll still like me.  In fact, ultimately, that's up to you.  I can promise that I intend to like myself--to enjoy my own company--and that I will work to embody kindness, joy, patience, acceptance, strength, and love.  I have no idea where I'll end up, but I will share my journey with you.  You can find me here.

#Truth2015

Learning to Be Flexible With the Rules

I'm pretty much a rule person.  They keep the world tidy and orderly.  I believe in consequences for breaking rules, and I believe that we need to teach our children that there are consequences to their actions when the costs are small, rather than continuously bail them out and make their first experience of consequences come at a large cost.  I am also a pragmatist who also understands that pretty much every rule needs an exception because there will be circumstances that require it.

Parenting requires a fluidity and a balance between rules and exceptions.  Indeed, one of the reasons I said I wanted to be a parent was to learn flexibility and how to go with the flow.  Yes, the rule is generally "x," but because of "y," you can do/have "z" this one time.  There are times to hold fast to the rules, and times to bend (for some reason, I have Kenny Rogers' The Gambler running through my head), and parenting styles tend to dictate which rules we are more flexible with and under what circumstances.

Phil and I have been very lucky that we are pretty much on the same page about things.  We've been even luckier that the few times we have disagreed, it wasn't over anything big, and we still backed each other up in front of the child, and waited until later to discuss and reach consensus on whatever it was.  One thing which we agreed on before Mira was born was that she would sleep in her own room from the start.  And, except for when we were on vacation and there was only one room, we held pretty fast to that.  Even when she was in our room, we had her sleep in a separate pack-n-play.  We both held the line on this rule, with few exceptions.  Even so, there were some.  When she was scared on the cruise to Alaska, we let her sleep with us, and we all shared a bed for nap times during GenCon one year.

When I was pregnant with Patrick, we decided that it had been a pretty successful rule and planned to implement it with him as well.  In many ways, it was easier with him--no sleep training was necessary, as he was used to sleeping in his own bed away from us after a month in the hospital.  Moreover, he had too many tubes and wires to allow us to sleep with him even if we wanted to.  However, once we started being gone to Detroit for long periods of time, it was clear Mira needed reassurance, and we began to let her sleep with whichever parent was at home.  It was a rough time and making her feel safe was more important than holding the line.

When we brought Patrick home, we tried having her sleep in her own room, but she is scared of shadows and noises.  More than anything, though, she is scared she will wake up and we won't be there.  Scared of being taken away to live somewhere else.  Knowing the number of times she went to bed and I ended up taking Patrick to Detroit so she woke up to no mom or brother, and the multiple times she was taken by her grandparents for extended periods of time to Tennessee, these are not really irrational fears on her part.  So, we have allowed her to continue sleeping with us.

It's been difficult, to be sure, but there are some lovely moments--when she rolls over, drapes her arm over my shoulder, and says, "I love you, mommy," or when she scratches my back or smooths my hair with her hands in a soothing motion.  There are heartbreaking moments, too--when she wakes up crying because I am not there (I have been sleeping in the guest room so I don't get kicked in the stomach by her while I am recovering).  Each night, we let her choose where she wants to sleep--her room, our room with daddy, or the guest room with mommy.  Last night, she picked sleeping in the guest room with me.  I could tell she really missed me because she ended up putting a blanket over her face so she could not see the shadows made by the headlights of passing cars; she was willing to brave shadows to stay with me!

And then, there are the moments when I know I can't force her back to her room.  When she reaches out, multiple times, every night, to make sure I am still there.  If I have gotten up to go to the restroom, she wakes up to figure out where I am.  Once, she went walking through the house in the dark to find me and, when she did, she climbed up in bed and snuggled in next to me.  When Phil woke up and she wasn't there, he went on a search and found her snuggled up with me.  I love that she loves me, and wants me near, but it breaks my heart that she feels so scared, and her world feels so unstable to her.

In October, we had talked with her about having her start sleeping in her room every other night in November, and she was really excited about the plan--until it was time for the first night away.  Then it wasn't fun; it was scary.  Phil and I talked and we agreed that we would rather her feel safe and secure than rush her back to her room and potentially make things worse.  After all, it's only been since April that we've been allowing this.  Even if it lasts six more months, one year--even two--isn't long in the scheme of things.  We would much rather figure out how to make her feel secure enough to go back to her room willingly than force her to go back there now.  The world is scary enough when you are three--it's even scarier when your parents disappear at what seems like random, and your brother comes and goes and then is gone forever.  I can't even imagine.

So we bent.  Our firm "no co-sleeping" rule had to adapt, because, when we made it, we never anticipated the current circumstances.  None of this is to say that there are no more rules.  There are still rules, expectations, and consequences.  She figured out pretty quickly that people would treat her differently and let her get away with things if she said, "I'm sad because my brother died."  She discovered the words were a magical incantation that, once uttered, changed how the world worked.  We reigned that in pretty quickly (we think), and she is doing amazingly well for all she has been through, particularly given her age.  But things like this remind me that good parenting is a moving target.  There is no one single set of rules; no one perfect way that everyone should do it.  We learn; things change; we adapt.  It drives my type-A, OCD brain crazy, but I am learning when to be flexible, in hopes that it will keep me from breaking.

Catching Up

Dearest Readers,

I apologize for the radio silence.  Life got quite complicated, quite quickly.  We have been in and out of the hospital with Jellybean since March--a few weeks here, a month there, soon you're talking about real time!
I have been updating at our fundraising page and on Facebook, and have failed to keep you in the loop.  In an effort not to duplicate too much, you can find a few updates on Jellybean's feeding issues and hospitalizations at our GiveForward page.  (And if you feel like donating, please do!)

Anywho, the last update there indicated that Jellybean had gotten a G-tube.  We were home about a week from that stay when I received a call from Jellybean's heart surgeon that he wanted to do Jellybean's "full repair" sooner, rather than later, and we scheduled it for June 20.  We had barely adjusted to the idea of surgery being a mere weeks away when, five days later, Jellybean had a crappy night.  He vomited up an entire feed and became inconsolable--a very difficult thing to watch, particularly when he's such a happy guy all the time.  A trip to the local ER, an ambulance ride, and back to Detroit we went.  We arrived at CHM at about 6:30 a.m., and Jellybean had been screaming pretty much non-stop for almost 9 hours by that point. There was quite a flurry of activity upon arrival.  I repeated my story more times than I can count to goodness knows how many people.  One of the doctors with whom we had become familiar on Jellybean's first stay, Dr. K, was the one in charge, and Dr S, who did my fetal ultrasounds, performed Jellybean's echo to rule out a clot in the shunt.

I remember standing by the wall, watching everyone, and feeling comfortable because "our" docs were there.  I heard a phone ring.  Dr. K answered, and I heard him say, "We have a sick kid here."  I kept waiting for everyone to rush off to take care of the sick kid.  I saw Dr. K talk with a nurse, who then left, so I assumed she was off to take care of things.  When his phone rang again, and he said again, "We've got a very sick child," I don't know what it was about how he said it, but it suddenly sunk in that Jellybean *was* the very sick kid.  I was so used to taking him to the hospital, having them put him on oxygen, and just waiting, that I had no idea.  Having been unable to get his oxygen saturations where they needed to be, they intubated him and discussed taking him to the cath lab to see what was going on.  I signed paperwork and waited.

Suddenly, I noticed a large group of people down the hall, most of whom I recognized.  Physicians, residents, nurse clinicians.  There must have been 20 people or so gathered there.  Realization dawned on me--it was a massive discussion between cardiology and cardiovascular surgery about what course of action to take Jellybean.  I was floored.  Just as quickly, I noticed Dr. W, Jellybean's surgeon, and Dr. T, who did both his angioplasty caths, walking swiftly down the hall towards me.  Dr. W sat down next to me and indicated that he felt they should not do a cath, but should just move his repair surgery forward.  Three days later, Jellybean had his shunt taken down and his heart "repaired."  Surgery took all day, but when we saw him before they wheeled him up to the room, he was pink!!

It is now 20 days post-surgery. He's a tough, but fragile, little boy, wrapped in an adorable smiley package. He has had some ups and downs, but is improving overall.  Phil and I have been living bifurcated lives as he mostly stays at home with Lil' Bit while I stay with Jellybean in Detroit (what with being the food source and all).  We have experienced enormous amounts of support and unexpected moments of grace throughout all of this, and we are so grateful to everyone who has played a part in getting us through this.

Last weekend, I took a mini-vacation to get in some mommy/doodlebug time and attended a CHD symposium in Indianapolis.  It was so amazing, and soon, I plan to write a whole separate blog post just about it.  But, one of the things it reinforced for me is that I want to turn our experience into something more.  I want to help advocate for those CHD kids yet to come, as well as those already here.  I want to use my writing ability to communicate and transform my experiences into more than just a story; more than just another set of obstacles I have managed to overcome.  I want it to be meaningful and useful.  I want to use it as a catalyst for change.  I haven't figured out exactly how, but am taking baby steps in that direction.  I have started creating a website that will house this blog and, once up and running, will be the future solitary place for updates, as well as my platform for advocacy.  I have also started trying to turn the blog posts, Facebook updates, and memories into a cohesive story that can someday become a book to guide and support others on their journey.

Having limited free time as it is, I will now have even less.  So, please be patient with me, dear readers, if I am away more than I am here while I try to sort all of this out.  I hope you'll stick with me.  But, either way, thanks for having been here so far.  It's meant the world knowing that I am having a conversation with you, even if it has been mostly one-sided.  It has helped far more than you know.

The Final Countdown

[Those of you who listened to pop music in the 80's probably now have a song cootie stuck in your head.  You're welcome :)]

Although I've been somewhat quiet on the IVF front, recently, we've actually been doing a lot behind the scenes.  Now that we've made some decisions, I thought I would share those with you.

First, we spent the last month or two talking about how many embryos we wanted to use.  We talked about using three since this was our last round and we wanted to increase our chances of a "take home baby" (as opposed to simply achieving pregnancy).  We spoke with our doctor and he calculated that the increased risk of multiples was 4-5% and the increased chance of success was 5-10%.  So--the increased success rate was greater than the increased risk.  He had no objections to our using three.  The choice was up to us.  We prayed, thought, and talked about it for a while and we both reached the same place.  We don't think we can handle three.  Although the risk is small, there's no fraction of a kid.  If we hit the jackpot, we come home with triplets.  We agreed that twins would be tricky, but are willing to take that risk because both previous cycles we used two embryos and only one implanted.  Obviously, there's still a chance of triplets, even with two--one or both could split into identicals.  But, that chance is extremely slim.  Like, lightning bolt thin.  Certainly, much slimmer than the risk of multiples when transferring three embryos.  More important, we both still believe that we'll get what we're supposed to have.  If we really trust that, we'll stick with the regular plan.  Changing things up now really feels like inviting trouble.  So, we both agreed to stick with two.

Second, we agreed to go ahead with this round.  I can hear you now--"That's not news."  Well, actually, it is.  Although we previously agreed to one more cycle several months ago, we decided that it would be a good idea, now that the time is upon us, to reconsider our decision and see if that was still where we were, rather than just move forward because of the momentum of a choice previously made.  I wanted to honor any second thoughts either of us was having.  It's much easier not to start a cycle than stop it, and we certainly couldn't return a baby.  So, this was the time to decide whether we still wanted to go forward.  We know it's going to be hard.  We know everything about our lives will change again if we're successful.  But, there's so much that we want for ourselves and Lil' Bit that just doesn't happen without another child.  So, we've reaffirmed our decision to move forward.

That brings us to today.  Today is day 1 of the pre-procedure month.  Twenty days from now, I will take the first of my last rounds of shots.  This is it!  The countdown to our final attempt.  The countdown toward change.  The countdown toward shots!  The countdown for our last ride on the roller coaster.  After this, the park closes and we go home.  It's joyful and sad all at the same time.  I am nervous, anxious, excited!  I can't wait to find out what's going to happen.  But, as we move through the corrals, listening to the shrieks and cries of those already on the ride, waiting for our turn to board, I want to take time and wish luck to all those in line with us--whether in front or behind.  None of us knows how this will turn out.  Just know that I hope for your success and I wish you joy and happiness no matter what the outcome.  If you need it, you will always have a friend here on the ground who has been there, who knows what it's like, and who sends you love and comfort.  Here's to you, wherever you are in your journey.  And here's to me, as I set out on a final ride.

Already?!

As you know, we decided to do one last round of IVF in September.  As it's still June (although just barely), September seems so very far away.  Summer just started; September means school.  That's forever away.  Now, I would be lying to say I haven't been thinking about our last time--it consumes much of my free thought--whenever I actually have some, and I keep getting frustrated that I have to wait so long.  But, this week brought me back to the now.  Because, you see, I had forgotten something.  Something that is both exciting and terrifying.  In the world of IVF, it's already time to start gearing up!  Ack!  I'm not ready!

I spoke to one of the IVF coordinators this week about getting the meds ordered and they will be sending me my folder and consent forms within the next week or so.  We're doing the long protocol again, so in roughly one month, at the end of July, we start the process.  Granted, the first 21 days are more waiting, but we have to actively and accurately count those 21 days.  On day 21 (roughly August 18), the shots start again.  Holy cow!  I am less than 2 months away from starting shots!  And I haven't even thought about what to put in my feel better bucket this time!  Breathe.  *gasp*  Breathe.  *gasp*  BREATHE! *pant pant* Okay.  I'm okay.

Ten to fourteen days later (last time it was 12), we start the additional meds and begin what they call "procedure month," i.e. the 18-day countdown to transfer.  Since they only do transfers Tuesday through Friday, we'll make sure that day 18 falls on one of those days before we start.  That means we're looking at a transfer maybe September 14, but more likely September 19, 20, or 21.  All of which means a June baby. June.  It's June now!  If we're successful, in less than a year I will have another child!

All of this is so crazy to contemplate.  I am so excited (you can tell by the fact that I got to plan out all those numbers up there)!  I'm also terrified.  Although I am still absolutely certain that this will be our last round, it's bittersweet.  It means we've reached the end of our journey in creating our family.  All of the time, energy, and resources we have been utilizing to make decisions and plans and take care of all the medical stuff necessary to make it happen will be over.  No more shots.  No more calendars.  No more agonizing decisions.  I can have my surgery and we can work on settling in as a family of whatever size--3, 4, 5(?!).  And whether that event occurs October with an unsuccessful try, sometime thereafter with a pregnancy loss, or next June with another baby, it's going to happen within the next year.  It means change.  It means loss.  It means growth.  It means time is moving on.

I know everyone always said that time moves so much faster as you get older and even more so once you have kids.  I am discovering how true that really is.   So, as I kick myself into overdrive, trying to lose that last bit of weight, planning things for my feel better bucket, and getting myself physically and mentally prepared, I want to also take a few extra minutes each day with Lil' Bit and enjoy her just as she is.  Be amazed at who she is becoming.  Because whether she's an only child or a big sister, change is coming, and it will be here soon.  In fact, it's almost already here.