On the Oddities of Grieving

Grief is strange.  There is simply no other word to describe it.  It hits at odd times, in ways you do not expect.  Sometimes, the things that set you off make sense, but other times, there is simply no rational explanation for how you are feeling.  Every day is different and you really can't prepare because you don't know what is going to happen.  Sure, you expect sadness and difficulties on the "big" days--birthdays, anniversaries, etc.--but there's no way to know what will set you off, no way to know what things will make you feel as though, without them, you cannot function.

I have been going through Patrick's things and have had no trouble deciding which clothes to keep and give away--except for a few things.  Oddly, the things I can't deal with right now are things that were 24-month clothes he was given but never had a chance to wear, so they still have the tags on.  In theory, there is no sentimental reason to keep them--they aren't family pieces Mira wore, and he never wore them.  So, why can't I part with them?  Also, his bedding set--comforter, sheet, bumpers, bed skirt, diaper holder, curtain, clothes hamper--I have no attachment to any of it, except for the comforter.  Why just the comforter, when Patrick never even slept under it?  Whatever the reason, my current dilemma is whether to give all of the rest of it away without the comforter, or hang on to it until I am ready to part with the comforter so I can donate it as a complete set.

At the same time, Phil and I easily decided that we will turn the nursery into a playroom/family library.  We have had no trouble giving away car seats and strollers and bouncy seats and various other bits of baby paraphernalia.  I cannot fathom what the difference is, but I am trying to honor my feelings and just putting aside those things with which I am not yet ready to part and, hopefully, in time I will either understand why I need to keep them, or be ready to let them go.

Then there are the grief triggers--things that set you off that you weren't anticipating.  Things like the crinkly paper at the doctor's office that Patrick used to love to roll on and tear up to hear the sound.  The smell of a different deodorant than I usually use, which I bought in Detroit because I ended up there without my kit bag.  The party supply catalog that comes in the mail advertising all the necessities for Patrick's first birthday party.  The Amazon.com recommendations to purchase baby items because I have purchased them in the past.  I have no doubt that Mira's trip to the cardiologist in two weeks will back tons of memories and feelings because we were last there only days before Patrick went back to Detroit for the last time.  When you are grieving, life is like a Michigan road after a rough winter--full of potholes you don't see coming, can't avoid, and might put you out of commission for a few days.  And it's not going to get easier.  Next April, and indeed at least once a year for the rest of her life, we will have to take Mira to Detroit for a cardiology visit and will have to experience the hospital and see all of the doctors and nurses again.

Even so, there are things that bring me comfort--like sleeping curled up under Patrick's fleece froggy blanket, listening to "Happy," reading through the notes people left at the visitation and funeral, watching the videos of him on my phone, and looking at the amazing picture of him and his sister above the fireplace.

I don't understand and certainly can't describe or explain how my heart can feel so full and so empty at the same time,  All I know is that I love my baby boy.  My life is both brighter for having him in it, and duller for his having left it.  I will forever be caught in the duality of gratefulness for our time together and frustration and anger at how short that time was.

I am also caught between wanting to shy away from all things CHD and knowing that I have to keep fighting because I still have a child with CHD.  I find myself crying myself to sleep at night, fearful that her next trip to the cardiologist will reveal that her pulmonary pressures are increasing, meaning that the medications aren't working, which means a long, slow trip toward right heart failure and the eventual need for a heart/lung transplant.  I reach over and stroke her hair, snuggle her close, give thanks for our time together, and try not to borrow trouble.  But, with the wounds from Patrick so fresh, the trips to the doctor so frequent, and the medication reminders every day, it's a struggle.  Like everything else, all I can do is take it one day at a time, one hour at a time, one breath at a time.  In that way, grief seems a lot more like everyday life and feels more manageable.  Here's hoping.

Coming Full Circle--How My Hysterectomy and Complete Infertility Made Me Pregnant Again

Almost five years ago, on October 28, 2009, I wrote a note on my Facebook page that ultimately began this blog.  This date sears my heart as I read it.  All I have been through in less than five years:  the struggles to get pregnant, miscarriage, failed IVF, two children, CHD diagnoses, open-heart surgeries, and the death of my baby boy.  We are 11 days away from what would have been his first birthday--the same day that will begin year six of our journey: October 29, 2014.

These past five years have altered my life, and me, in ways I had never imagined.  Back when we started, I honestly believed that just fighting to become pregnant would be the hardest thing I would ever have to face.  Instead, it's moving forward as a family of three after having been a family of four.  I am physically and emotionally exhausted.  I was not prepared for this journey.  I have been lucky for the support of friends, family, and my spouse.  I know that each one of these challenges has tested and destroyed other marriages.  That mine has survived all of them is something of a miracle, for which I am eternally grateful.

Speaking of miracles, we have been asked whether we believe in miracles and why we think Patrick didn't get one.  Here's the thing.  God did not look down and say, "Oh, it's the Hobsons, this can't happen to them, we'll fix it right away."  That's not how it works.  God does miracles in His own time for His own purpose, not on demand.  And the truth is, we had tons of miracles already.  Two successful rounds of IVF--miracle!  Our daughter's health in spite of her serious CHD diagnosis and open-heart surgery--miracle!  Patrick's birth--miracle!  The surgeon's ability to unifocalize Patrick's pulmonary arteries without a patch during the first surgery--miracle!  Ten months with the most adorable, cuddly, smiling boy--miracle!  That Patrick died is not evidence of a lack of God's presence or the lack of miracles.  It is not evidence that we did not believe hard enough, or that we sinned somehow.  It is not evidence of failure or inadequacy.  Patrick's death is proof of life.  To paraphrase Braveheart: Everyone dies; the task before us is to truly live.

I am still figuring out how to do that.  I am coping with survivor's guilt.  There are so many things we are going to be able to do now that we couldn't do if Patrick had lived--like my return to work.  But it's important that I find a way to move forward; to make my life meaningful.  Because maybe, just maybe, Patrick did me a great honor.  Maybe he sacrificed his time here so that I would not have to give up my career to become a full-time caretaker for him, so that we wouldn't have to split up the family, or potentially destroy the family we worked so hard to create.  Figuring out whether this is true is not important.  What is important is to figure out how to live authentically and honor Patrick's life as best I can with mine.

Which brings me back to my hysterectomy.  I am now wholly and completely infertile.  There will be no more children.  That part of my life is irrevocably over.  But I am not sad.  I am completely at peace.  Not only am I finally free of the physical pain and suffering my conditions caused me, I am free of worry, free of monthly reminders, free to take all of the energy that has been tied up in these other things and channel it into--or birth--something new.  Maybe a new me.  Maybe finally start to turn all of this into a book.  I am using this recovery time to try and figure it out.  What I do know is that I am excited to find myself pregnant again--not with child, but with possibilities.  And, as sad as I am, and will continue to be, about the loss of my baby boy, I can be excited about what is ahead; excited to move forward in this new phase of life; excited to figure out how best to honor Patrick's memory.

My New Theme Song

Lying awake at 2:00 a.m., feeling equal parts exhaustion, pain, and insomnia, I find my thoughts once again turn to silly songs and parodies to make light of my situation.
So here, without further adieu, is my latest creation:

(Sung to the tune of "WKRP in Cincinnati")

Baby, if you ever wondered
Wondered, whatever became of me
I'm lying on a bed down in the guest room
Recovering from a hysterectomy

Got kind of tired of pain and medications
In the store, up and down the aisle
Babies were the best thing my womb gave to me
The rest I will forget after a while

I'm recovering now from a hys-ter-rec-to-my.

(Goodnight everybody!)

Holding the Line, Part II

I have often wondered whether Lil' Bit has learned the lessons I intended her to from our punishments/consequences.  From this morning's actions, it appears Lil' Bit learned an entirely different lesson than I thought from yesterday.  We woke up this morning and she was all sunshines and rainbows.  She pops off to the bathroom (she was dry all night!!), and while she's going potty she says, "Mommy, what day is it?"
"Tuesday."
"What does that mean?"
"Another day-care day."

The words were no sooner out of my mouth than she flung her legs to kick off both pajama pants and pull-up in my direction.  She stretches her legs wide, pushes herself backwards again the toilet seat, and grabs hold of it, giving me a look that says, "I dare you to take me off here" and "Let's see you put this in the car" all at the same time.

My first thought was, "Oh goodie.  Another stand-off."
My second thought was, "Well, at least she learned something from yesterday's encounter."
My third thought was, "Hey.  Maybe I did too!"  Rather than escalate the situation and demand answers from her, I tried something different.

I began by says, "It looks like that made you really upset.  Do you want to tell me what's wrong?"  Silence and glares.  "Well, if you decide you want to talk about it, let me know."  Silence.  "Would you like to put your pull-up back on?  I see it's still dry.  Way to go!"  Silence and glares.  "Ok.  Well, when you're done, you let me know."  And I left.  I went to my bedroom and began going through my closet to look for something to wear.  I would occasionally hear noises from the bathroom--flushing; washing hands; pulling the shower curtain.  After 10 minutes, she shows up in my doorway wearing the pull-up and pajamas.

Score one for me! I said inside my head.  Outloud, I asked, "Are you ready for breakfast?"  We went to the kitchen, got her her "hero cookie" for going potty, and settled in for some Bubble Guppies.  I asked her what she wanted to wear, and she told me.  I got the clothes for her, along with her breakfast.  I brought her meds and she took them without blinking.  I am so awesome, I thought to myself.  Ooops!  Never a good idea.

When it came time to leave, I waited for a good stopping point and paused the DVD.  Cue BIG FRUMP.
"Time to go."
"But I want to watch it."
I was willing to negotiate and let her finish the episode, so I asked "Will you be ready to go when it's over?"
*shakes head no*
Well, no reason to let her watch anymore of it, then.  I turned off the television.  "Are you ready for your gummies?"  (Vitamins, but they are a special treat because she can only have one per day).
"Yes, please!"  She hops off the chair and heads upstairs.  Halfway up, she remembers she's mad and stomps the rest of the way up.
Ok, I think.  She's angry, but still doing what I want.  This is good, but maybe we can do better.
I stomp after her.  "Oh, that's great stomping!  I'm gonna stomp, too!  Stomping is so much fun."
Lil' Bit stopped stomping and turned around to look at me with another glare.  I cheerfully got her her gummy and some crackers for the car rise, and she happily walked out to the garage, got buckled in, and we left.

Part way there, she starts telling me that the trees are making faces at her.  I told her to smile at them.  She said, "No.  They have to smile at me first."  I said, "Well, I'm going to smile at them anyway.  They can't being me down.  I can be happy no matter what the trees do.  Haha trees!  You can't bring me down.  I'm gonna smile at you even if you don't smile back."
After about 30 seconds, Lil' Bit says, "Mommy!  I smiled at the trees, and they smiled back."
"Oh good.  Your smile always makes me happy.  I'm glad it made the trees happy, too."  Te remainder of the drive and drop-off had happy Lil' Bit.  Yay!

Phew!!  I'm really glad I used non-engagement and redirection to get us through to a fairly happy morning without the drama from yesterday.  Still, I'm a little afraid of what she's going to try tomorrow.

Holding the Line

Today was Lil' Bit's return to daycare after being gone to her relatives in Tennessee for a month.  Last night, she was quite excited to return.  This morning, not so much.  When I asked her what she wanted to wear, she sat down on the bathroom floor in a frump and refused to speak.  I brushed her hair and gave her choices on what to wear.  She said no to everything.  I told her that if she didn't pick, I would pick for her.  Receiving no response, I went in search of an outfit for her.

While I was looking through a pile of clothes, she came downstairs and sat on a kitchen chair.  I held up the outfit I had selected for her and told her she would wear it unless she picked something else.  She declined to pick anything.  I attempted to put the kort on, but she pulled her legs back under the chair and gave me a look that dared me to try to put it on her.  Because I want "no" to mean "no" when it comes to respecting her body, and I told her that she is the boss of herself when it comes to her body, I refused to get into a physical fight.  I placed the clothes on the table and told her that she could wear the outfit I selected, or I would take her to daycare in just her pull-up.

Receiving no response, I packed her clothes, along with her meds and put them in the car.  As I was making trips in and out of the house to get my purse, I noticed she had turned around backwards in the chair.  By the time I was done, she had her arms wrapped around the top, her legs through the back, and she was hanging on.  It was clear she was anticipating me trying to pull her off the chair.  Rather than fight her to pull her free, I wordlessly picked up the chair with her hanging on and carried it to the garage door.  I moved my car so I could get her and the chair into the garage, came back into the house, picked up her and the chair and carried them out to the garage.  I placed her--still naked--and the chair to which she was clinging into the back of the car.  I placed the clothes on the back seat next to her car seat, started the car, backed out of the garage, and sat in the driveway.

I heard occasional cries for attention, but nothing serious.  I watched as she attempted to lay down, but there wasn't enough room in the back with her and the chair.  I rolled down the window, parked the car, and told her that her options were to get dressed and go to daycare, or to stay in the driveway all day.  I told her I would stay in the car with her, so she wouldn't be alone, but that I was going to play Frozen games on my phone until she decided what she wanted.  I asked her a few times if she was ready to get dressed, but my question would prompt a defiant look, a vigorous head shake, and it was clear she wanted to "win."  I would nod, say, "ok," and go back to my phone.

I finally quit asking anything and, after a 15-minute period where I never said anything or looked her way, I heard her moving around.  Watching in the rearview mirror, I watcher her climb out of the back into the back seat and begin to play with some toys she had left back there.  I turned around, picked up the shirt, and tentatively began dressing her.  She did not fight me, so I continued.  She began to cry, so I pulled her into the front seat and sat her in my lap and just held her while she cried.  She helped me finish dressing her, but continued to cry.  I asked her if she could use her words to tell me what was wrong, but she was crying too hard.  We snuggled for a while, and when she would quiet down, I would try again.  At best, I got a few "no" headshakes, but no words.

After a long, quiet period of snuggles and hugs, where I just spoke to her reassuringly about anything I could think of that might be bothering her, I told her that if she could talk with me, maybe we could reach a solution to her problem.  I told her that I needed to get work done and that I couldn't do it without her going to daycare, but that I would come pick her up when it was over, and we would get her a movie and pizza for dinner.  She nodded "yes."  A breakthrough!

I asked if she was ready for me to put her in her seat and didn't receive any objections, so I held her close, got out of my seat, opened the back door, put her in her seat, and buckled her in.  She answered me when I asked what kind of music she wanted.  I got in, put on the requested tunes, and we drove off.  She didn't say anything the whole ride, but she wasn't crying and didn't have the angry look in her eye.

When we arrived, I asked her if she wanted to walk in, or wanted me to carry her.  She said "carry," so I did.  When we sat down, her friends were happy to see her.  She smiled and volunteered the names of some of the other kids by way of introduction for me.  She sat in her chair, began to eat her donuts, smiled, gave me kisses goodbye, and told me she was ready for me to go.

It took an hour, but I think I held the line.  She ended up dressed and at day care.  I never issued any threats, but just gave her choices and consequences.  I probably could have done things differently earlier in the process that would not have escalated us to sitting in the driveway and necessitated the stubborn-off, but I did my best to manage the situation as I had helped create it.  Hopefully, I reinforced that there are choices she gets to make--what she wears, etc--and choices I get to make--whether she goes to daycare, etc.  Since she was ultimately happy shortly after arrival and there was no yelling, no physical altercations, and no idle threats, I'm calling this one a win.

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.

Mother's Day

It's Mother's Day, and I will mark it the same way I have for the last two weeks--sitting in Jellybean's hospital room, worrying about his oxygen levels and heart function.  And I've been thinking about how much of a representation of motherhood that is.  Giving up "my" day for my children.  Certainly my mother and mother-in-law have done it for me.  College graduation and law school graduation were both on Mother's Day, and this year it was going to be Jellybean's baptism (turns out he made other plans).  But they both gave up, and were willing to again give up, their day to share it in celebration with me.

Still, I think celebrations are easy to share; it just means a bigger party.  As I sit in the hospital watching all the other moms (and all of this is certainly true of dads and Father's Day), I am reminded of the sacrifices we make as parents.  The very thing that makes tomorrow "my" day--my reason to celebrate--is the exact same reason I don't get to celebrate.  None of this ever crossed my mind.  Not when I was fighting so hard to become a parent.  Not when I knew my kids needed surgery. 

I have spent Halloween and Thanksgiving in the hospital with my kids.  I spent numerous Easter mornings in the ER with my kids.  I have spent my birthday on bed rest, trying to save my pregnancy.  But not once did I ever think I would have to give up Mother's Day.  Why, I can't say.  And why it matters is even harder to pin down. This week will see my 15th wedding anniversary, but missing that to take care of my child at the hospital doesn't phase me--I missed the first one for my grandfather's funeral, and we have missed many more since.  Phil and I have celebrated numerous occasions on alternative days because of crazy schedules or other various reasons.

So I admit to being flummoxed.  Why Mother's Day?  Why a moving holiday manufactured to sell greeting cards?  Why does it matter?  The pre-mom me would be shaking her head and ranting that I should be grateful just to be a mom--and I am.  I am humbled every year that I am able to label myself mother, when that label is denied to many.  And maybe that's it.  I didn't fight for my birthday, or my wedding.  I didn't struggle and wrestle and rage and weep to earn any label as much as I did to be called "mom."  So maybe I don't want to spend Mother's Day in the hospital watching over my baby because being in the hospital means I could lose the very thing that makes me a mom.

And I know that I will always be a mom, regardless of whether I outlive my children, but having two kids with heart issues keeps the reality of that happening ever present.  I am reminded daily of the fleetingness of human life and how precious it is and how important it is to make the most of every moment.  And I struggle and berate myself when I get angry or frustrated with my children because I don't want to regret those moments when my kids do pass.  But I have to balance that guilt with the reality that I have to rest.  I have to give myself permission every afternoon to leave Jellybean's room to go take a nap because self-care is important.

Moms are very bad at self-care.  We feel selfish when we do nice things for ourselves, or put ourselves first.  But Mother's Day gives us an excuse.  No one will begrudge us nice things, or time for ourselves, on that day.  Viewed in that light, it's easier to see why losing the one day society tells me I can loaf off on my motherly obligations is frustrating.  But the solution isn't in the holiday.  The solution is in changing to dynamic.  What if I took 30 minutes a week for self-care?  I would get roughly the same amount of time as the 24 hours of Mother's Day, but spread over the year.  I could have guilt-free me-time that would make me a better mom/wife/employee/self all year round.  I'm not sure how it would work.  It will take some time to refine the idea, but I think it's a good jumping off point.  A place to begin the conversation with myself.  Maybe I can work on it tomorrow, as I sit in the hospital, holding my precious, snuggly, sleeping Jellybean in my arms.  Because, you know, as a mom, I can multi-task. :)

Happy Mother's Day to all moms--but especially to those of us spending it with kids in the hospital.