Grief is Forever

It has been ages since I’ve written in this blog.  Months.

Part of me feels bad because I want to document this process of grief that started…well, the grief started long before Luna, but my documentation started with Luna.  But what I’ve discovered is that grief is forever.

The way that my grief makes itself known is different now than it used to be, but it’s still there.  It’s a little monster that sits in my chest and waits until small tiny little nothings appear (like the perfect bite of pinto beans and cornbread or a Wonder Woman sweater that’s not my size) before it attacks and causes fresh pain all over again.

It will be six years in December since Jake died of his heart attack and I still pause before cleaning out his bathroom because I remember how I felt the first time I cleaned it after he died.  We found him on that floor.  He died in that room.  And the feeling I get is not disgust or sadness, it’s fear that I’m erasing evidence of his presence in that room.  Fear that I’m removing him from the space.  I still make my family call his room HIS room.  Not the spare room.  Not the blue room.  Jake’s room.  Uncle Bubba’s room.  Because he existed. He filled that space and to call it anything else ignores that…..doesn’t it?  (Forget the fact that my son, Bo, is like a mini-Jake in his interests and habits and personality.  Case and point:  he is currently working on a book of mythical creatures, now that he has finished his instruction manual for building a dragon robot.  I totally blame Jake for that one.)

Four years ago this month, we found out about Luna’s Turners Syndrome and started the whole medical rigmarole of appointments and ultrasounds and echocardiograms two and three times a week.  There are certain smells and sounds that I associate with that time in my life – medical tape, the rubber tubing of a stethoscope, the sound of velcro like a blood pressure cuff, the ppppbbbbbt sound of squirting gel out of a bottle.  It’s silly but every time someone squirts stuff out of a plastic bottle (ketchup, mustard, hair gel), it reminds me of the ultrasound where we found out Luna’s heart was no longer beating.

That means it has been almost four years without Jen.  I see so much of Jen in her sons that I miss her almost constantly. There is not a day that goes by that I don’t wish I could call her and talk to her.  Even to this day, I still forget sometimes that I can’t call her up.  Someone gave me some sad news this morning and my first reaction was to pick up my phone and call a dead woman!  The saddest part of this for me is that I find myself holding in a lot because she isn’t around to talk to.  That woman was so easy to talk to that I could vent about her TO her!  I have a collection of stories that I’m saving for her one day.  Maybe I should write them down.

And my dad.  Oh, Daddy.  I don’t even know where to start with my daddy.  I’m still not sure how I’m functioning without having hugged that man in almost three years.  I’m not ready to get in to that.

BUT, my point is that grief doesn’t ever go away.  It doesn’t stop.  Once you’ve experienced it, grief will always be a part of you.  Those of you grieving now?  Don’t wait for it to go away.  Don’t expect to “get over it.”  Don’t think there is something wrong if it still hurts after all this time.

It changes you forever. FOR.EV.ER. (How many of you said that like the kid from the movie Sandlot?)

But don’t let it change you for the worst.

Yes, I am sad more often now than I was.  But my happy is more happy than it’s ever been.  My joy is amplified to degrees that it never could have if I wasn’t given the opportunity to see and appreciate what God has given me.

I miss Jake and Luna and Jen and Dad.  I have these great big gaping holes in my life that cannot be filled up with anything or anyone else.  But I also have these amazing people in my life that love me and need me. My family.  My friends.  My students.  My coworkers.

Thank you God, for teaching me to love with more of my heart.  Thank you, God for showing me how to minister to my family, friends and students in ways I never could before.  Thank you, God for giving me the opportunity to help those who hurt.  Thank you, God, for making me more like you.  Continue to work in me, Lord.

Thank you, my loved ones, for loving me back.

Isn’t that what makes us grieve in the first place?  Our love?  What I mean is that I wouldn’t be sad about any of them if I didn’t love them in the first place.  I wouldn’t miss them if I didn’t love them.  I wouldn’t be upset if I wasn’t blessed by having them in my life in the first place.

Grief is forever.  But so is God.  And God is love.

 

The Big 4-0

Dearest Jen,

Today would be your 40th birthday, Nina.   If you were still around, we would celebrate with crabs and cake or pizza and movies or cuddles and ice cream cake from Hoffman’s.  We would gather together and pig out and laugh.  We all know that we would have started celebrating on the first of the month since you don’t celebrate your birthDAY so much as your birthMONTH.

If you were still around, I would have found some pretty yarn or a beautiful scarf or some fragrant tea to give to you. I’d have my kids draw you birthday cards and bake you a cake. We would come visit you and my sticky kids, smelling like summer, would snuggle beside you on the couch while Criminal Minds or Law and Order plays on the TV even though no one is watching.

If you were still around, your laugh would be more than just a memory and your smile would be more than a mental photograph.  Your hugs would still warm me up from the outside in.  Your raised eyebrow would still make me aware of my stupidity and your mom face would still even the most unruly child.

If you were still around, you would have opinions on the new Harry Potter book.  You’d have a list of summer reading books to tell me about and suggest to me.  You’d have a million knitting projects, some for my children and all of them for people other than yourself.  And I would still wonder how you have time for all of that.

If you were still around, I could talk to you about everything.  I could teach you all about what I learned in Botany this summer and we could compare our tiny gardens and jealously poke fun at Jes’ green thumb.  I would tell you all the goofy things my kids say during the day.  (Like the other day, Joe was wearing a skirt and he said, “I wearing girl clothes, but I still boy because I wiener.”)  You would make me miss my treadmill time because you’d come over too early or too late for me to get on it without being rude, just like you used to make me miss my nap times.  And I wouldn’t care.

If you were still around, I wouldn’t worry about people and relationships so much.  I wouldn’t be so self conscious about my introverted nature because I know you would fill me in on who is who and why I should care and what I should be praying about.  I wouldn’t be so isolated because you’d force me to do social things and go places. (I just hosted a LuLaRoe party because I thought it was the kind of thing you’d make me do.)

If you were still around, I’d be happy.  I had to delete that sentence a hundred times and rewrite it.  I am happy, Nina.  Without you here.  I am happy.  But that happiness was hard to come by.  That happiness took extra work.  This happiness was the hard-fought, snatched from the claws of anxiety and depression, sunlight through the storm clouds kind.  I think you wouldn’t want me to be sad without you, but you should know it’s a different kind of happiness.

Since you’re not around, I am teaching my children about strength.  I’m teaching them to love and cherish their siblings even when they are the most obnoxious people they know.  I am teaching them about the realities of the weaknesses of the human body and how they can’t stop us from being happy.  I’m teaching them to love reading and imagination and information.  I am teaching them to take care of each other and to always use “secret” ingredients in recipes.  I’m teaching them to hug and cuddle all the time.  I’m teaching them that one of the strongest, most amazing women I know was their Aunta Nina and that they have incredible lessons to learn from her story.  I feel the most sad for Maggie because I know that you two would enjoy each other so much (at least as long as neither one of you is pouting).

Nina, I love you and you are remembered.  You are cherished and adored.  You will not – CANNOT – be forgotten or ignored.  You are still a force of nature and an immovable object.  You are still incredible and beautiful and strong.  You still make everyone pale by comparison.  You were so brilliant with light while you were alive, that you still give off light years after your death – like a star who’s light is visible from Earth even though, light years away, it doesn’t glow anymore.

Happy birthday, old woman.  We love you.  Sending you kisses and steamed crabs in heaven.

Love,
Taters

What just happened?

While we were on vacation in the Poconos with our Korn extended family (plus my mom), I got my very first bloody nose ever. I really don’t remember ever having a bloody nose before even as a child. It was heavy and gross. The blood went down my throat making me vomit clots and spit out blood. It lasted about an hour before it finally stopped and I breathed a great big sigh of relief.

Until the next morning. And again later that day. And repeatedly over the next couple of days. They started on Monday night. On Wednesday we were checking out to come home and decided we should stop in an ER on the way. In the ER, the doc said these types of nosebleeds are not something to worry about. He gave me some medicated nasal spray, advised me to pinch my nose for 30 minutes instead of 10 and wished me luck.

My nose bled again before we even got home. I used the spray and pinched for longer and tried not to over exert myself. It maybe seemed to help a little. On Thursday, I had one nosebleed and on Friday I had none! I was excited until about 2pm on Saturday when I sneezed while bending over to wash my hands and, as Patrick says, “I blew a gasket.”

On Saturday and Sunday I had repeated choking on blood nosebleeds, keeping me from sleeping at night and walking me up from those few moments of sleep I did get. Monday afternoon, I had an appointment with an ENT (ear nose and throat doctor). Of course, my nose bleeds right before the appointment but not while I’m at the docs. He does a thorough exam and finds no blood vessels that are good candidates for cauterization (burning them closed so they stop bleeding). He says that like most pregnant women, I have a lot of engorged blood vessels – called hypervascularization and it should go away after the baby is born. He packs my nose full of gauze and says to come back in a week.

No bloody noses on Tuesday, but on Wednesday, while putting in a load of laundry, I blow a gasket again. I think I get them under control, but that evening I have one of my worst while Patrick is away. My kids basically put themselves to bed. 

We go back to the ENT on Thursday morning. We see a different doctor who says the same thing as the other guy and packs me again. She says that if this doesn’t work, we should go to the ER at Carroll so they can put me to sleep and find the problem.

On Friday, I get a small nosebleed while taking a nap but I get it under control and think maybe it was a fluke. That night around 12:30am, my nose bleeds again for real (including the clots and gushing and gagging) so I wake up a very flustered Patrick. He calls the ENT who is on call at Carroll and he says to come right in. My mom comes over to watch the kids while they sleep.

Once we get to Carroll, we get checked right in to the ER and they prepare an OR. My nose is of course not bleeding anymore. Everyone is super efficient and sweet and kind. They have a nurse from L&D come to monitor the baby while I have my nose looked at. We joke about how her job should be easy. I kiss my husband after bragging about how wonderful he is to all the nurses and docs.

I get a bloody nose as I’m lying on the table in the OR and the ENT is super excited because then he can see where it’s coming from. I fall asleep pretty quickly as people fuss over me in all directions.

Fast forward to when I wake up. I wake up in flashes. I remember having a hard time breathing. I remember seeing Patrick and my mother. I remember someone telling me they delivered the baby and I think I remember seeing him briefly before I was whisked away.

Saturday was rough. My hemoglobin was 11.6g/dL at the ER in the Poconos. Low is defined as less than 12g in women. When I get to the ER at Carroll, it’s just above 8g. After my nasal surgery, it’s just above 6g. Half what it should be to be considered normal. I spent the day adjusting emotionally to the fact that I had been rushed into an emergency c-section and my baby is not in my belly anymore. I am so tired from the general anesthesia and blood loss that I’m falling asleep every five minutes, in the middle of sentences, during conversations, even when I’m nursing baby Finn.

Let’s take a minute to brag about how awesome my baby is. The reason they decided to take him by c-section is because his pulse kept dropping (starting in the 140s and dropping to the 40s) and his oxygen saturation levels were troublesome. They had already extubated me from the nasal surgery and had to reintubate me for the section. But on Saturday when I was barely holding it together, my Finn was beautiful and gorgeous and seemingly healthy. He nursed like a champ and especially so considering I wasn’t up for helping him. The cardiologist had concerns because his pulse was still low so he was kept in the special care nursery with the oxygen on.

Overnight, they decided I needed a transfusion and I got 4 units of blood over the course of the night and Sunday day. Sunday morning people kept commenting on how much better I looked but I was still feeling very fatigued. Add to that nausea, gas pains, uterine cramps, incision pains and general grumpiness. Not to mention the residual swelling, pain and discomfort from the nasal packing and surgery.

They were promising me that Finn would be able to come join me, but we were waiting for a follow up echocardiogram and then we were waiting to have the pediatrician read that echocardiogram. He didn’t join me until 7:45pm on Sunday.

At some point on Sunday, much of my discomfort passed. I threw up and the nausea passed. I napped on my side and much of my gas pains passed. I worked with my mom and nurse to get out of bed and sit in a chair. Then my transfusions ended so I didn’t have to drag that IV pole around. And they took out my catheter so I could use the bathroom on my own. Finally, I finished the antibiotic, so they disconnected the IV on my left side. 

So here I am, late on Sunday evening, holding my Phinehas Aquinas, listening to him make little baby cooing sounds thankful because it could have been so much worse. I can look beyond the stuffy nose and how much it hurts to cough when I realize how awesome it is that my Finn and I are both okay.

image

Now….all I have to worry about are the pesky nosebleeds. Please pray with me that they won’t return.

And now let me brag about a couple of other people. My mother continues to amaze me. Here we are at a hospital where she doesn’t even work and most of the nurses and techs know her anyway. She’s spending the night with me tonight to make sure I can get around okay. She gives me her opinions, helps me make decisions and gets me the best care I can get. I really could not do this without her.

And last but not least, my amazing husband Patrick deserves some sort of medal. The night I was rolled into the OR, he sat in the family waiting room. Someone came out to tell him that the baby was delivered and was okay, but when he asked about me, they said they didn’t have any information about me at that time. Can you imagine what was going through his head? Then he watched me struggle through those first hours while I was still fighting the anesthesia and overcoming the blood loss. He arranged child care for the three big kids, taking a few shifts himself to put them to bed and cook them meals. He is an incredible man and I can’t believe God chose me to be his wife. Thank you God, for Patrick.

10 Lessons I Learned in My Big Family

The whole family can get in on this silly face thing.  Even the in-laws are adept at these skills.

When you are raised as part of a big family, you feel a sense of pride in the number of siblings you have.  I would feel angry when I wasn’t the student in the classroom with the most siblings.  (I have vivid memories of meeting a girl in high school Spanish class who had 9 siblings when I had 8 and I probably missed out on having an awesome friend because I swore to hate her forever after.)

It becomes a competition after that. “Oh yeah?  You have more siblings?  Well, my mom is one of ELEVEN children!”  Or you qualify your numbering by saying, “And none of those are twins or triplets” like multiple births is cheating.  Or you say, “And those are all from the same set of parents” like having one set of prolific parents counts for more points than multiple sets of prolific parents.

Regardless of who wins the biggest family competition, you realize after talking to your competitors, that they understand you in a way your other classmates just don’t.  There are aspects of their personalities that just make sense in your big-family-minded psychology.  And this is because living with a big family teaches you lessons.  Makes you special.

Lesson #1:  You have strengths and weaknesses.  Partner up accordingly.

When you have enough siblings to make teams, you learn to very quickly size up the people around you so that you can form the best possible team for the competition.  Whatever that competition is.  An argument.  A game.  A manipulation.  A chore.  Whatever.  Not only that, but your siblings are not shy about explaining to you why they chose someone else for their “team” and so you become (sometimes painfully) aware of your weaknesses.  Instead of making you feel helpless because of these weaknesses, it reminds you to find someone to compliment them and make your team stronger.This also makes you feel valued for your strengths because they are equally bold in explaining why they want you on their team.  

This is not limited to formal and official competitions.  If you were in a room and an argument over what to eat for dinner begins, you automatically pick sides based on who is in the argument.  I learned fast to always pick Jen’s side in an argument because she was ruthless and never pick Jes’ side because she would fold in a heartbeat. (I love you, Jes.  You fold out of love, not out of weakness.)

Lesson #2:  Someone is always watching you.

Seriously.  ALWAYS.  You can’t do anything without someone knowing about it.  You have older siblings who want you to toe the line and younger siblings who want to emulate you. And if your parents are good at this big family thing (and mine were) your younger siblings have been trained to innocently spy on you.  It’s not that we’re trained to tattletale, it’s just that a simple statement like “Go check and see how Bo is doing” or “Can you make sure that Jake is doing okay?” makes a younger sibling feel like they’re helping an older sibling in a very special way.  So when we come back with, “Bo is great!  He’s showing Jake how to mudwrestle in the backyard,”  we have no idea that we’ve just betrayed them.  And younger siblings remember EVERYTHING.  At least mine do.  (Ahem, Joe.) So you learn quickly to make better decisions and you also learn that you will eventually get caught.  Almost inevitably.

Lesson #3:  Figure out who is in charge.

In a big family, there is always someone in charge.  This is a big thing that I’ve noticed about smaller families – there is no desire for someone to be in charge.  They can sit in a room and have very little power-play because they are comfortable with everyone being in charge of themselves.  Not in a big family.  In a big family, you are trained from birth that your older siblings are in charge of you simply because they’re older than you.  Sometimes there are events that occur that disrupt that age hierarchy, but that’s rare.  For example, my older brother Jimbo did not like to be in charge.  He wanted to be alone.  So when he was left in charge, he put me in charge and locked himself in his room to play Savage Garden at an unhealthy volume.  I think in some ways this has damaged me in a way that makes me believe that I am permanently in charge….

Anyway, once you’ve read a room and figured out who is in charge, this will help in case of arguments or if one of your siblings tries to tell you what to do.  Only the sibling who is in charge can tell you what to do. If there is an argument, the final decision goes to the sibling in charge.  If you can’t decide what to watch on TV or what to eat for lunch or what to do for fun, the final decision goes to the sibling in charge.  And everyone else has to respect that.  (How do you small-family people make decisions if no one is in charge?!  I guess everyone makes their own decisions independently?  You mean, you don’t make ONE thing for lunch and everyone has to eat it without whining?  Everyone can make their own lunch?  No way….not possible.)

Lesson #4:  Make your expectations known.

When there are so many people in the same house, it would be stupid to assume that everyone knows what you want all the time.  Maybe in a small-family house, everyone would know that you like your cereal in the big orange bowl because you eat it that way every day, and they would stay away from it.  But in a big-family house your younger sibling wants to use that bowl too just because you use it every day and you have to make sure they understand it’s off limits.  You never assume that they’ll understand without your say-so because they won’t.  I would get a monster box of Frosted Mini Wheats for Christmas every year and even if I would write my name on box, the only time my brothers wouldn’t eat them was when I would write “DO NOT EAT” on the box multiple times.  So you just get used to telling people what you want and how you want it.  You can’t blame them for not living up to your expectations if you never told them what you expected!

Lesson #5:  Go with the flow.

When there are too many people to accommodate everyone’s every whim, you get used to rolling with the punches.  Sometimes you get it your way and sometimes you’re the one who gets disappointed, but you NEVER get upset when it doesn’t work out your way.  It’s all about what works for the majority.  You want to do Christmas on Christmas morning?  Okay.  Who else does that work for? If it doesn’t work for most of the siblings, then you figure out another time.  Even if it doesn’t work the best for you.  You just learn that things don’t have to be perfect and you don’t throw a fit when they’re not.  Can you imagine what it would be like in a house with 11 people if everyone threw a fit when it didn’t go their way?!  Goodness.

Lesson #6:  Take care of each other.  Sometimes that means you drop everything.

You definitely learn to take care of each other in a big family.  In the obvious ways, like helping your sibs find their shoes or pouring them a cup of milk, but also in less obvious ways like making faces at them while they nervously prepare for their band solo or bringing your obviously uncool sister to parties with your friends because she’s scared of public school.  You know exactly what to do to make each one of your siblings feel better after a bad day and you know exactly how to do it.  To this day, I know when my brother Joe is having a bad day and I’ll sometimes say to his wife (even though she knows better than I do) “He needs to watch a movie.  Any movie.”

Sometimes this means that what we need is for all of us to get together and we’ll end up making some excuse for a party and staying up way later than we wanted to and keeping our kids up past bedtime just because we need to be together.  It’s all about taking care of each other.  There is an intense connection in big families and we don’t question it when the spirit moves us to be together.  It’s like we’re all connected by these elastic cords and when they’ve been stretched too far too long, they snap us back together and we have no choice but to obey.    

Lesson #7:  Do unto others as you would have them do unto you.

My mother would ask us all the time growing up, “What is the golden rule?!” usually out of desperation and exhaustion.  But it really hammered into our brains that we should treat people the way we want to be treated.  When you live in a house that is constantly full of people who can recall at any moment any of a thousand things you have done wrong in the past, it really helps to try to be nice to them.  I remember one time I was arguing with Jen (because she was in charge and I don’t respond well to not being in charge) and Jake was in the next room keeping score. (He literally had a paper and pencil and was making tallies every time someone said something particularly good.) At the end of the argument, he told me I won and, after a brief pause to sift through some mental files, I said, “You know that time you drew with permanent marker in one of my books?  You’re forgiven.” I just remember thinking that maybe he’d forgive me one day.  Or maybe Jen would forgive me one day.  Or maybe ANYONE would forgive me one day.  

So I remember this when I am tempted to do something awful to someone.  If I do this awful thing, I am opening myself up to the possibility of awful things being done to me. Like when Jes locked Bo out of the house and then he broke a window coming back into the house and they both got in trouble. Or when I let my cat kill Bo’s snake and he farted into a jar and left the jar in my room for me to find…and open….(P.S.  Never open a seemingly random empty jar.)

Lesson #8:  Beauty is in the eye of the beholder.

I first heard this phrase in that classic episode of The Twilight Zone where an ugly lady goes in to get her face surgically altered so that she could be attractive again.  I won’t ruin it for you, but they talk about how beauty is in the eye of the beholder and I had to have my dad explain it to me.  He also used to say “One man’s trash is another man’s treasure.”  Or once (when eating a bowl of cereal that was all crumbs because it was the bottom of the box) “One man’s crumbs is another man’s cereal.”  

This was something we definitely experienced in our big family.  A joke I used with one sibling would fall flat, but the same joke with another one would be quoted decades later.  I used to play this game with my younger brothers where I was a psychiatrist and they would come to me for therapy sessions. Jake and Joe played along because it made me happy, but eventually they told me it was stupid and they wouldn’t play anymore.  But Rico honestly enjoyed his sessions and he would totally dive head first into his therapy.  I’m not certain, but I think he actually thought I was qualified to provide psychiatric help.  It’s the same with just about anything.  Jes and I are completely addicted to my mother’s pies, but Jen thought they were no good.  We learned very quickly that not everyone is going to love everything you love.  And sometimes that meant you had to sit through The Iron Giant AGAIN because Jack just couldn’t get enough. But eventually you will probably find someone who agrees with you and loves what you love, if you just ask enough people.

This also means we are not quick to share our opinion about everything.  You know those people who just have to tell the room how they feel about every single thing?  We don’t do that.  We wait to share until our opinion might add to the conversation.  Well…this is true for all members of big families except the oldest sibling, because they were alone long enough to think their opinion is the most important.

Lesson #9:  Why do anything alone?

The only thing I did alone growing up was bathe, use the toilet and change my clothes.  Every other time, there was someone around that I had to interact with.  When I was reading a book, my brothers would ask me questions about the people on the cover or what was happening in the story.  When I was making dinner, my brothers were providing their suggestions for what it needed or whining about what they wanted to eat instead.  When I was cleaning, my brothers were complaining about the fact that I was making them clean too.  But we never did anything alone.  We went to the library as a group.  We went to the store as a group.  We walked to the bus stop as a group.  We went to school as a group.  We did church events together.  We ate meals together. If we asked to go somewhere, the answer almost always included, “Take so-and-so with you.”

How this looks in my life now is that I like it when people tag along at the grocery store.  I turn the television on to make my home a little more noisy while I’m doing housecleaning or grading or napping.  My gut reaction to a party invitation is “I wonder if Jes is going” or “Maybe I can ride with mom.”  Even now with three small children, I wonder if I would enjoy some alone time, but I have a hard time imagining what I would do then.  Maybe take a nap (with the tv on).

And I feel weird when I talk to my youngest brother Jack because he’s the only one at home with my mom now and he does quite a bit alone.  I don’t know what that’s like at all.  When I was a junior in high school, Jake was a freshman, Joe was in 7th grade, Rico was in 4th grade and Jack was 2.  There was no chance I’d get a moment alone.  But I think Jack still has some of the same habits.  He is constantly listening to music because it’s “too quiet” otherwise, for example.  On days he doesn’t have to go to school, he sometimes chooses to come to MY school just because.  

Lesson #10:  Do your part.

When there are a billion people living in one house, the mess can be enormous.  Seriously monumental.  We found very quickly that if one person refused to do their chore, everyone would refuse to do their chore and chaos quickly ensued.  Not only that, but when we have to get something done – anything done – we are quick to divvy up the responsibilities and delegate.  Part of this goes back to knowing strengths and weaknesses, so we know who to put in charge of what, but we definitely break it up.  We never have a party where one person is in charge of food.  No way.  We never plan something without everyone’s input and we definitely don’t forget to invite people to participate even if we know they won’t come.  This means we have huge whole-family conversations on Facebook where our phones are buzzing and beeping every minute for an hour and a half.  My husband can’t keep up with these conversations and by the time he sits down to read them, he has 50 unread messages and most of them are inside jokes or personal insults aimed lovingly at each other.  He waits for me to tell him the important parts.

But there is a distinct understanding that you are going to carry your load.  That you are going to uphold your end of the bargain.  And you expect everyone else to do that too.  And again, you’ve made your expectations clear so there is no confusion.  I think I’m starting to repeat myself.

And so, when I was still very young (after I was in my I’m-going-to-be-a-nun phase and right before my I’d-rather-remove-my-own-ovaries-with-a-spoon phase) I decided that I was going to have a big family.  I knew that these were lessons my kids needed to learn and that I wouldn’t teach them as well as a house full of people would teach them.

And I’ve discovered something since then.  I don’t have to fill my house with my own children to make them learn this.  I can fill my house with my brothers and sisters and their children and they can learn the same lessons.  The more my house is full – of ANYONE – the more my children learn about people and how to handle them.

That said, we are expecting #5 in August.  Yay to full houses!  (We NEVER forget to count our Luna.  Even though she doesn’t get to fill our house physically, she fills our house emotionally and losing her taught us and our kids just as much as having her would.)

Celebrate Good Times

The past week has felt a little different than the weeks before. It has only been about a month since we found out that Luna is not a perfectly healthy baby but it is very hard to remember what it felt like before that. Hopeful. Excited. Normal.

The further along we get, the more inevitable it seems that something will happen soon. And I guess that makes sense because we are getting closer to it no matter what that something is. It’s a totally different kind of preparation for a baby you don’t think you’ll get to keep then for a baby you expect to bring home and raise.

If Luna was healthy, we would be looking at cars that could fit three car seats and trying to get our one-year-old to sleep in a bed instead of the crib. I would be writing up lesson plans for my maternity leave and pulling out all the baby girl newborn clothes to wash and fold. I would have bought a new breast pump from my sister who could get me a good deal on a good brand.

But she’s not. So we are trying to prepare our three-year-old for the fact that we might not get to meet her. We are scheduling a million doctor appointments and hoping that we see or hear a heartbeat at each one. My baby “bump” is measuring about three months bigger than I am, so even though I am only 24 weeks next Monday, I am measuring at about eight months. So all the fatigue and discomfort that comes in the third trimester is already here. And I am starting to feel bitter that I have to go through all this and might not get a baby to snuggle at the end. Then I feel guilty for my bitterness.

Praise the Lord for small pieces of normalcy. This morning we had a maternity photo shoot with our dear friend Kim. It was a beautiful day for some outdoor shots and even if my kids weren’t easy to control, at least we got a couple of smiles out of them. I am very excited to see these pictures, but even more I am excited that we could do something that I would have done if Luna was healthy.

The whole time my husband was convincing my son to cooperate because it was something that mommy wanted, and “we want mommy to be happy.” It wasn’t about doing it special for Luna or doing it to remember Luna. As if we could forget. We were a family celebrating and recording a new baby and the family that baby is being born into. We were enjoying the tiny life that God blessed us with even if it is only for a few months and even if I am the only one that gets to feel her movements or if my heartbeat is the only one she gets to hear. It was a celebration and not an opportunity to mourn.

Just like my parents raised us all to remember and love Joshua who died of SIDS before I was born, all of my children will know and love Luna. They will count her in the sibling count just like I still count Josh and Jake. They will talk about her without apology and without fear because they will know all about her and what happened to her. We are not ashamed and neither will they be.

Today’s photo shoot reminded me to be thankful for every moment and celebrate ALL of God’s blessings even if they are not the blessings that we expect. Or the blessings that anyone expects. And I have already been blessed far beyond what I deserve. And I have so much to be thankful for.

Thank you, Kimmy for that reminder.

On the Horizon

When we visit the perinatologist at the high risk radiology place, we always leave with pretty grim news. We still praise God every time we see that tiny heart beating, and we always seem to end with the same conversation about trusting in the Lord. And we stayed true to this pattern.

Luna was moving around more than usual which was pretty fun. Her swollen chubby legs and arms waving around to match the bumps and swishes I felt.

The hygroma is still there and probably a little larger than the last time. The fluid buildup is pretty much the same if not slightly worse. But the most recent concern is her lung development (or lack thereof). The cardiologist on Monday described them as “nubbins” and the perinatologist said they were pretty nonexistent. This is a serious concern because for Luna to survive after any kind of delivery, she would really need those lungs.

The doctor said we had three options since the legal age of viability (24 weeks) is fast approaching:

1) Go home and check in again in two weeks, keeping in mind that a stillbirth is a distinct possibility.

2) Check into the hospital and go on full monitors in case the baby’s vitals drop, in which case they would do an emergency delivery. They would probably give me steroids to encourage lung development and Luna’s survival is unlikely in an emergency delivery with her current issues.

3) Check in the hospital and get steroids. Monitor the baby for a while and go home after a time if there are no significant changes.

My gut reaction was to go home and wait, but we didn’t want to miss an opportunity to give Luna a better chance. We discussed the pros and cons of each. Going in the hospital would not be fun because any minor change or drop in heart rate would make the docs decide to force delivery. I would be stuck in that bed away from my family, my students, my friends. (Jen, I have more sympathy for you now than I did. Sorry for not visiting more.)

We chose to wait it out at home. Besides feeling really huge and getting run down and exhausted way easier than I like, I am doing just fine and don’t think being confined to a hospital bed is really the answer. We understand the situation with Luna is pretty dire and that, in all likelihood, we will lose her in the coming weeks. Any efforts are last ditch.

And according to the pattern, we ended the appointment by talking with the doctor about how we have peace knowing that God is in control and everything will go the way it should. Those were the doc’s words and we relished the opportunity to agree wholeheartedly.

So, Luna will probably not survive delivery even if she makes it there, but we definitely know that she has a purpose in her tiny, short life and God is already using her in amazing ways. If God can use an unborn baby girl in such awesome ways, how much more should we be convinced that He has a purpose for each of us?

Thank you all for your love and support. It means so much to us and we know that it would be very different without it. Please keep praying as the further along we get, the closer the end feels and the harder it is to keep our eyes on Christ instead of our own selfish wants and feelings.

Matters of the Heart

Although the answers we got at the cardiologist weren’t the most favorable, I feel better knowing just a little more about our Luna.

Luna has what is called an AV canal which is a large hole between her heart’s two upper chambers and another hole between the two lower chambers. She is lucky in that she has two independent valves and her heart function seems to be very good. The doctor was not super concerned because he said these structural issues are easily fixed with surgery and they are not contributing to the build up of fluid in her chest or abdomen. He couldn’t get a good look at her aorta, but said that it is possible that there is something called a coarctation where the aorta narrows or pinches a few centimeters away from the heart which can cause dangerous pressure in the aorta. This is also easily fixed with surgery.

It was nice to talk to him because he took some time to get to know our situation before talking to us and was careful to explain everything he saw on the ultrasound and even to explain what he was looking for and what it might mean. He was friendly but thorough and didn’t seem to worry about upsetting me, which I appreciate. I can’t really trust people who are too worried about upsetting me to tell me the whole story, you know?

He made some suggestions about where we should deliver if we get to that point and was very careful to explain to us that the heart issues alone were not life threatening at this point. All very good things. And more comforting than “we don’t know what to tell you.”

The next step is figuring out what is causing the fluid build up – the hydrops – in her abdomen and chest. We will probably look at her kidneys next and determine if they are doing a proper job of filtering the blood. So we have an ultrasound tomorrow.

I am just so relieved and ecstatic every time I see that tiny beating heart on the screen. I am anticipating a day when I won’t see that and I am never sure how I will react in the moment.

When Jake had his heart attack at 16, I was a senior in high school. I found him on the floor outside my room and he was telling me that his chest hurt. That day I felt like I had a purpose. I had to call the ambulance and I had to wake my dad up. I had to take care of my younger siblings. I stupidly went to school that day because I felt like it was part of my duty and purpose and it gave me something to focus on while my brother had open heart surgery.

That day was so different from the day I found him lifeless on the bathroom floor. Dying Jake was relatively easy. Dead Jake, not so easy.

I feel much the same way about Luna. I know that God is going to take her one day and it’s almost the same way that I knew He would take Jake. For years, I knew in the back of my mind that Jake could have a heart attack and die, but I never really prepared for it. The only difference is that, having lost Jake, I know that I will be okay if I lose Luna. Life will continue and this experience will shape me and mold me more into the person that God wants me to be.

Do you ever think about that? What we go through in life is God’s way of making us into a better image of him. This situation with my Luna is only molding me into someone who is better equipped to share Christ with others. And no matter what happens – if we get to keep her or if she gets to go to heaven and meet up with Jakey – it is going to make me the person that God wants me to be. And that is the person that I want to be.

I am always praying for that miracle, but ultimately praying for God’s will to be done.