Bullying

As the news continues to be filled with stories of children who kill themselves or others because they are being bullied, I worry about how to raise Lil' Bit to have enough self-esteem to survive these behaviors and to be open enough to tell me if things are going wrong.  Too often, the parents indicate that they didn't know anything was wrong.  More tragic is when parents have gotten involved and schools have done nothing to stop the behavior.  That leaves it to us parents to make our kids tough enough to withstand any such bullying, without teaching them to resort to violence.  In our culture, easier said than done.  Why, for goodness sake, do we live in a society where cutting other people down in order to feel better about ourselves is socially acceptable?

All of these stories also force me to deal with my own experiences with childhood bullying.  I got by with help from my friends and a few special teachers, but it wasn't easy--particularly when people I had thought were my friends were working behind my back, making things worse.  Being the subject of false rumors and having teachers believe them made for awkward classes.  I occasionally thought of killing myself, although I was probably too chicken to ever really do it.  But, I did reach the point where I was self-mutilating by scratching my arms with my fingernails until they bled.  I hated how other kids could make me feel.  I didn't need to be popular, but I would have preferred not being a pariah.  I can only imagine how much worse those experiences would have been if we had had Facebook, Twitter, or cell phones with cameras back then.  I hate that, even now, I will still occasionally question my self-worth based on things that happened then.  I have done so much, accomplished so much, have friends and family who would move the world for me, but under the right conditions, in a few seconds, I can be reduced to a puddle of insecurity.

Whether we're hardwired this way, or simply conditioned by society, it seems as though we believe negative things much more easily.  If we viewed ourselves from the outside, as a product being reviewed on Amazon, and there were 400 5-star reviews, numerous 4-star reviews, and 7 1-star reviews, we would probably think that this was a stellar product.  Why is it, then, that we internally believe the 7 1-star reviews?  Why is it so much easier to see how crazy it is when smart people think they are dumb and beautiful people think they are ugly if it is someone other than ourselves?  But, more importantly, how do we change it?  And how do I equip my child not only to withstand any bullying to which she might be exposed, but also teach her to stand with those who are being bullied so that they don't feel alone?

I have no answers.  But I have a theory on where to start--I can do my best to embody and model for Lil' Bit those behaviors, values, and characteristics I want her to have.  I will do my best to support her, love her, and build her up to protect her from the harmful things people can say.  But I still hold out hope that maybe, by the time she starts school, we, as a society, will have a better handle on how to stop this madness.

Finding My Humanity

Today was a difficult day.  This past weekend, we lost a very dear friend and today was her funeral.  She was such a wonderful, generous, loving person.  My life is truly better for having known her and I am saddened that Lil' Bit will only ever hear stories about her.  Her funeral was beautiful, but it was difficult.  Difficult in a way most people don't have to experience.  Difficult because my spouse was the officiant.  Difficult because I had to grieve by myself.  This is not to say I was alone.  I was surrounded by friends and one of them placed a loving hand on my back during the most emotional parts.  But even she had her spouse with her, whose hand she could hold, and who could comfort her in a way no one else could.

Looking around, I saw most of my married friends being comforted by their spouses and, in that moment, I felt envy.  Envy the depths of which I had not felt since I had to watch friends become pregnant while I struggled with infertility.  I did not begrudge them their comfort.  I just wished that I could have a spouse with a "regular" job, so he could sit there with me.  But as I sat in my grief for my friend, it occurred to me that if I had a spouse with a "regular" job, we would have never ended up here.  And I would never have met her.  It also dawned on me that there was at least one other person in that room missing the presence of their spouse, only their spouse would not be there to comfort them at the end of the service, or the end of the day, or ever again.

And I cried.  I cried in thanks for the blessings I had.  I cried at the injustice of the world losing such an amazing person.  I cried because I realized that I had things other people would envy.  And I cried at the humanness of my envy, of my self-centeredness at a time when I should have been thinking of my friends, of my guilt over having felt envy and self-centeredness, and of my joy at recognizing my blessings.  To quote Doctor Who, "Crying when you're happy-that is so human."   Today, of all days, my friend gave me another gift; she helped me see my humanity.

Thanks for everything, Connie.  You are loved and missed.  Someday, we'll understand.

One Last Ride

Well, it's official.  We've signed up to take one last ride on the IVF rollercoaster.  We've decided not to try until September because otherwise, either the shots, the procedure, or the due date would interfere with something else already on the calendar.  And, since we get to pick, why the heck not make it most convenient for us, right?

So, you probably have some questions.  Like, what made us decide we wanted to try again?  Or perhaps, how do you know it will be the last time?  Fortunately, we have some answers we're willing to share.  So, here goes.

When we did the FET (frozen embryo transfer) last time, we pretty much agreed that we would get what we get and be done.  So, if I didn't get pregnant, we would stop, but if we did, then we'd have however many kids we got and call it a day.  We hadn't planned on there being another alternative.  But, there was.  I can't speak for Phil, but for me, getting pregnant and then losing Oliver only made me really want to try again.  As heavy as the loss hit me, I knew that I wanted another child.  I reached my decision long before Phil did.  But, since this really isn't a solo endeavor, he had to be on board.  Otherwise, we weren't doing it again.  I was smart enough not to try to get a decision out of him during Lent/Easter or the few weeks thereafter.  But after that, we started to talk about where we were.  One problem both of us had was that we were so exhausted by Lil' Bit and the rest of our lives, we couldn't imagine having any energy for another child.  Then, as you may recall, I discovered anti-depressants.  Oh, brother!  I suddenly had energy for me, for Lil' Bit, for work, and some left over.  It was a freaking miracle as far as I was concerned.  Suddenly, I felt like I could handle another one.  At some point, Phil reached the same conclusion, and we moved forward and got our names on the calendar.

Another factor that played in to this decision for me was Lil' Bit's condition.  I finally broke down and asked her doctors what they thought her life expectancy was.  Obviously, because of her conditions, there is no real group of people to compare her with, but they both said the same thing.  Given how great she's doing and the fact that she has never showed any symptoms, they don't see any reason at this point why she won't grow to adulthood.  This was very important to me.  I didn't want to be having a potential "replacement" child, and I didn't want a child that would feel second-banana to a sick older sibling.  I also didn't think I could bring a child into the world knowing that they were going to have to experience the loss of their sibling.  Certainly, there is no guarantee.  There are many ways to lose a child, even a healthy one, long before they reach adulthood.  But that risk is inherent with all children and not unique to Lil' Bit.  So, it's one I was willing to accept.

And now we reach the million dollar question--how do we know this will be our last round.  Well, several reasons.  First, I am not willing to undergo another "fresh" cycle.  The cost monetarily, physically, and emotionally are more than I am willing to endure.  So what, you say.  You have seven frozen embryos left and you're only going to use two.  True.  But, given Lil' Bit's congenital defect and the high likelihood that Oliver miscarried because of a genetic abnormality, and given that the clinic always uses the best and strongest embryos each time, chances of a viable pregnancy with the remaining five would be slimmer each time.  Don't get me wrong.  There are people who utilize each and every one and get healthy pregnancies with "lower" grade embryos.  It's not a given.  But it's a percentages game and it's one I'm not willing to play.  So, this would be the last round I would want to use the frozens and I'm not willing to do another fresh.  (And, in case you're wondering, provided that the clinic is willing to accept them, our plan is to donate the remaining ones for others to use.)

More than that, though, is that whatever result we get, we'll be emotionally and physically done.  There are three possible results:  no pregnancy; miscarriage; baby.  If I don't get pregnant, we'd be looking at another procedure.  Even if we did another FET, there is a high physical and emotional cost and I'm not getting any younger.  As I creep closer to 40 and with Phil being five years older than I, it doesn't seem right to spend more assets on attempts for children that, if successful, would result in their reaching college age around the time we want to retire and, if not successful, simply depletes our assets when we have a child who requires ongoing medical care.  If we miscarry again, I will be done.  There is no way I could put myself through that again.  And any new attempt would invariably have that risk.  I am willing to take that risk once more, but that's all I can take.  Finally, if we get pregnant and have a baby (or babies), we'll be done.  We will have achieved our goal.  No reason to do it again.  Finally, attendant with each of these decisions is also the fact that, once we're done, I can finally have my hysterectomy and stop having all these problems.

So there you have it.  Why we decided to try again, but why this will be our last try.  Welcome to our one last ride.  Come along and join the fun.

Free Will

As I watch Lil' Bit grow and learn, I have come to understand why God would want to give us free will.  I have also come to understand the metaphor of God as father and us as children.

Infancy is wonderful.  It is full of snuggles and coos and cute faces and learning your child's personality.  But the real fun and joy, at least for me, has come as Lil' Bit got older.  The way her face lights up when she sees me.  The feeling of her little arms hugging me back.  Her crawling into my lap to read her a book.  I love that she is choosing to share time with me, choosing to give me love.  As an infant, she didn't really have a choice.  If I wanted to snuggle, we snuggled.  And there's something amazing about snuggling a little, warm lump.  But I wouldn't trade my sassy toddler who can show me affection, for anything.  I imagine that for God, it's much the same way.  The relationship is so much bigger, so much more meaningful, when it's by choice.  Both He and I get more out of a relationship where I choose to be part of it, in the same way that Lil' Bit and I have a much more intimate relationship because she can choose whether she wants me in her personal space.

I imagine that the first time she tells me she hates me, I will have a small glimpse of what God must feel like when we yell and rage at Him because we don't understand why things happen.  Getting upset is normal.  But, ultimately, we have to trust that, in the same way that we are trying to do what we think is best for our children, knowing that they will get upset because they don't understand, God does the same.  God has more knowledge and a bigger picture to look at than we do.  But we still have free will.  We can tell a child 100 times not to touch a hot stove, but ultimately, if they are persistent and choose to ignore the warnings, they will find a way to touch one.  In the same way, God attempts to guide and nudge us in the right direction, gently at first, then in less subtle ways.  But He will allow us to burn ourselves if we are persistent enough and ignore the warnings.  So, the next time I feel like God is telling me "no," I will take time to rethink my position and see if it's because God is trying to gently guide me down another path.

This new-found understanding will not prevent me from getting angry at God in the future over things I feel are wrong or unjust.  Just as it helps our children to get the anger out, it helps us to get it out, too.  But, in the end, I hope to be able to say:  "I'm sorry I got angry.  I just don't understand.  But it doesn't mean that I don't love you.  And it doesn't mean that I don't want you in my life."  And God will tell me, "Someday, you'll understand."

Adjustments in Perspective

Last week, it occurred to me that I had never researched Lil' Bit's pulmonary hypertension.  When I found out she only had one pulmonary artery, I scoured the web for information.  But, somehow, when the doctor said she had increased pressure in her heart and labeled it "pulmonary hypertension," it did not occur to me that it was A CONDITION.  Imagine my surprise when I found gobs of information, including a Pulmonary Hypertension Association, which included (wonderful!) resources for parents of kids who have it.  Sadly, one of the things I discovered is that they don't know much.  Part of the problem is that the research generally involves adults, making it hard to know if the same will hold true for children.  In addition, research and treatment are pretty new.  Thus, much of the information still talks about a 2-3 year morbidity rate for adults who leave the condition untreated.  It is extremely hard to find any information about morbidity rates for those receiving treatment, let alone for children receiving treatment.  But, even in my frustration at not finding all of the information I had been hoping to find, I did learn a few things.

First, I learned that Lil' Bit had a chronic condition.  I know this seems like a "well duh," but actually it was was hard to accept.  Back when we were told she needed surgery, we assumed that once she had the surgery, she would be fixed.  Then, we ended up having to do meds, which we thought would be for one year.  Now it looks more like two.  The truth is, we don't know how long she'll need the meds.  It may be forever.  And so, I have decided to treat it like it will be forever.  If I tell myself that she will need meds 6 times a day for the rest of her life, I can quit waiting for the next disappointment.  I can figure out how to schedule my life so that I can do things and get out of the house instead of telling myself that, if I just hold out until X date, things will get easier.  If she ends up getting off meds, or has fewer, BONUS.  But, if not, I'm not stuck in a holding pattern.

Second, I learned that we were doing a good job.  When I went to my doctor to get my anti-depressants, since he is also Lil' Bit's GP, I asked him if we were doing a good job with her.  I certainly thought we were, but I had no frame of reference.  I have never raised a "regular" child, let alone one with special needs.  I could tell myself that we were doing well all I wanted, but it would not calm me.  I needed someone who knew what he was talking about to tell me so.  I can believe an expert.  What he told me made me cry.  He said we were doing "phenomenal."  He said that when he had other people bring in children who had semi-serious conditions, he would hold us out as example parents.  Me.  An example parent.  Huh.  We thought we were failing at normal.  Turns out, we're exceeding at very hard.  Which leads me to...

Third, what we are doing is very hard.  We talked with Lil' Bit's cardiologist recently about what he thought Lil' Bit's long-term care needs would be in an effort to factor that in to our consideration of whether we would have additional children.  We also talked to him about the increased risk of additional children having heart issues.  Like Dr. R, Dr. S was extremely complimentary on how we are doing.  He acknowledged that the social aspects of giving meds to anyone, let alone a child, 6 times a day is difficult and admitted that he had a hard time taking one med once a day for 10 days.  He said he understood that he made recommendations and wanted people to follow them, but he also understood that it was difficult to do so, and that we deserved a medal for doing as well as we were.

Fourth, I learned that what we are doing is very hard.  This lesson is listed twice because it cannot be over emphasized.  I have to stop comparing myself to parents with children who had no or few health issues.  I also have to stop comparing myself to parents whose children have more difficult conditions than mine.  You know, I think the lesson here is to stop comparing myself.  But, I digress.  I need to, and must, allow myself to acknowledge that what I am doing is not easy.  Only by doing so will I schedule time for my own self-care.  Otherwise, I will just try to power through because I should be able to.  If it's hard, there is no reason to power through.  I can give myself permission to be tired and exhausted.  These are reasonable feelings when dealing with "something hard" and allow me to take time for me.  

With these lessons, I have two choices.  I can accept them, or I can ignore them.  I have opted for the former and am working to adjust my perspective to the "new normal."  I don't know how bad Lil' Bit's condition will ultimately be, so I am going to enjoy every day I have with her.  I don't know how long things will be difficult, so I will make time for me in the craziness that exists instead of waiting for the calm that may never be.  And, I don't know what it's like to parent any other child, so I won't try; I will just work on being the best parent I can be to the child I have.  If I can do those three things, it will be enough.

Returning to Myself

The last month has been really hard for me.  I finally sucked up my pride and went to the doctor for some antidepressants.  I was exhausted and burnt out.  I had reached the point where I was nonfunctional and that wasn't helping anyone.  My morning routine was shot.  I quit making real breakfast and just ate cereal.  I stopped taking full showers every morning.  All I wanted to do after dropping Lil' Bit off at daycare was drive home and curl up under the covers.  I ate potato chips and Snickers bars for lunch.  I almost never ate dinner, and if I did, it was likely ice cream.

I always thought of myself as a strong capable person.  And, truth be told, I still am.  I was just dealt an extra heavy dose of life recently.  Still, I HATED having to get meds.  Nothing makes me feel weaker and less in control than having to medicate myself.  But none of that changes the fact that I needed it.

So, I go talk to my doctor and he prescribed me a mild, entry-level antidepressant.  It gave me nausea and insomnia the first week (not helping!), but those finally went away.  However, new and more problematic side effects started to occur and I ended up in the ER the Saturday before Easter (really not helping!).  I stopped that med immediately and when I went to my doctor last week he put me on a different class of anti-depressant.  This one has been amazing.  I felt better after two days.  I've even had a few bouts of baby fever--proving I'm feeling better!

In fact, yesterday I not only felt like my old self again, but I felt like I did before I had Lil' Bit.  I felt like a capable parent.  And as that awareness dawned on me, it occurred to me that maybe I had been dealing with depression longer than I thought.  See, I knew being a parent made you feel tired and overwhelmed, so when I felt that way after having Lil' Bit, I assumed it was just the lack of sleep.  I never felt sad or anything that I thought of as "depressed."  But, given how much better I feel now, I think I was suffering from mild postpartum depression.  Nothing huge, and nothing that wouldn't have gone away with time, EXCEPT for suddenly having all of Lil' Bit's medical issues to deal with, and a miscarriage, and, and, and.  Stress and grief piled up to create situational depression that exacerbated the postpartum depression I didn't know I had and *poof* the world was a horrible place that kept dumping on me and I just wanted to hide until it stopped.

Now that I have come out from under the clouds and feel so much better, I wish I had done this sooner.  I hate that my pride and stubbornness prevented me from seeking help.  But, rather than beat myself up about it, I can take pleasure in the fact that I did, eventually, do something about it, and now, I am loving being a parent again.  I *might* even consider doing it again.  But even if we ultimately decide not to try again, I feel like I'm in a better place to accept whatever we decision we make because it won't be made from what felt like a place of defeat or resignation, but from a place of comfort and acceptance.  I know this will sound crazy coming from a planner and control freak, but I'm finally looking forward to what lies ahead without knowing what it will be.  Who knew surrender could be so freeing?!  Oh, right...  Well, at least I finally got here.  Welcome to MWS 2.0 (Mommy, Wife, Self).  Let's take her out for a spin!

Dayenu

With Easter approaching, and having just watched Prince of Egypt, I have been thinking about Passover--the celebration of the Exodus from Egypt.  As I have been working through my dark night of the soul  recently, I have been reminded that each of us has periods in our lives that feel like exile; when God does not seem to be present.

Less than three years ago, I was in a period of exile, angry at God and the world, struggling to understand my infertility, and wondering if and how I would ever have children.  God took me from exile by blessing me with Lil' Bit.  Frustratingly, exile returned as we coped with her medical condition and surgery, although we also felt many blessings during that time as well.  Blessings overflowed as she got better and we achieved pregnancy again.  Alas, exile returned with the loss of Oliver.  But, as I have mourned the loss of Oliver this last month, occasionally, I remembered to give thanks for Lil' Bit.  See, these last 16 months with her made it easy to forget that once I wasn't sure if I would ever have any children.

And so, as I struggle to reconcile my emotional need for additional children with the knowledge that, with Lil' Bit's needs, I don't know that I would be a good parent if I had more, I try to remember God's presence.  I remind myself that it is there, regardless of whether I can see it or feel it.  And, as frustrating as it is, I try to relinquish control; to let go and let God.  I try to let His will be done, whatever that is.  And I try to remember to give thanks for all that He has already done for me.

Which brings me back to Passover.  As I understand it (since it's not my tradition), at Passover, there is a song that is often sung called Dayenu, which means, roughly, it would have been enough.  Each of the stanzas of the song celebrate what God has done and are followed by "dayenu."  Any of these things would have been enough, but God did so much more.  And as I reflect, I realize that the same is true for me.  Which brings me to my own, personal, Dayenu:

It would have been enough...if He had brought me out of a bad marriage.

It would have been enough...if He had led me to Phil.

It would have been enough...if He had provided a full scholarship to law school.

It would have been enough...if He had led me to the job of my dreams.

It would have been enough...if He had granted me children.

And He did.  He granted me Lil' Bit.  And so, ultimately, if she is all I get, she is enough.  She is more than enough.  She is dayenu.