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.

Frustrated Expectations and Tough Choices

So today we took Lil' Bit to the cardiologist for another echocardiogram.  Although her pressures were slightly elevated from earlier, it was generally the same--in December Dr. S got 42 and Dr. R got 48 and today Dr. S got 49.  Still better than the 60s she was at, but 20 is normal.  So, what does that mean?  I asked what purpose the meds served if the pressures weren't going down.  The answer was that they may be what's keeping her pressures at the level they are currently at.  So, instead of her having a heart cath this November and getting weaned off her meds, she's going to get a full-sedation echo this December and a heart cath next November when she's three.  That means we have to keep medicating her 6 times a day for at least the next 18 months.

The difficulty is that it's extremely hard to do anything when your child needs meds at 5, 6, 10, 2, 5 and 6, and it's extremely hard to find babysitters who you trust to medicate your child properly and timely.  It makes scheduling trips and just figuring out how to get in nap time and meal times really difficult.  Although we still plan to make our scheduled trips this year, it's going to take a lot more planning.

Don't get me wrong.  The fact that her pressures haven't increased is great news, and I'm lucky that there are meds that keep her healthy.  I just had thought the light at the end of the tunnel was this November and now it's been pushed out a year, with no guarantee that that's the end either.

And so, as I drove home today from the doctor's office, I asked myself several questions to which there are no easy answers.  We had attempted to schedule my pregnancy with Oliver so that I would be due after everything was done with Lil' Bit.  Now that the end won't come until almost 2014--if at all--are we willing to try having another child in the midst of all this craziness?  Can I take the risk of having another child knowing that, at least currently, I lack the capacity to cope if the next one also has medical issues?  How long do I have the patience and ability to wait while we try and figure out the answer to these questions?  The longer we wait, the older I get; the more we pay for embryo storage fees; the longer we make our child-raising years; and the longer we delay my hysterectomy.

I know that I don't have to (and shouldn't) make any decisions today.  But if I had to, I would say that I've hit my squeal point.  I think Lil' Bit will have to be enough.  I just don't have it in me right now to cope with pregnancy and Lil' Bit's meds and the lack of a guarantee on the health of any subsequent baby.  And that makes me even more sad.  Because I feel like I've lost everything all over again.  I am overwhelmed.  I am tired.  I feel like a complete failure.  I feel like I just can't catch a break and the world is dumping on me and I don't know why.  It sucks.  And all I can do, is just keep going.  Because really, at some point, I have to reach a tomorrow that is better.  I just hope it's sooner rather than later.

Birth Control

My apologies about the controversial nature of the following post, but I have reached the point where I can no longer stay silent on this topic.

Women's increased access to birth control has been in the news a lot recently.  Honestly, it never occurred to me that a mandate that insurance cover birth control would be so controversial.  Why?  Because it was always medically necessary for me.  Indeed, it still is.  As I previously mentioned:

Whether it was ruptured ovarian cysts, extremely severe Mittelschmerz, endometriosis, or excessively long and heavy periods, I have always felt at war with myself.  My cycles started when I was 9 and I was on birth control by age 16 to regulate my body and stop the cysts.

Flash forward to yesterday.  Yesterday, I ovulated.  (Honestly, before all this crap broke out in the media, I might have thought telling people that bit of information was TMI.  Now, it seems rather tame.  And, given how interested those in politics appear to be in what happens in my uterus every month, now they know.)

For most people, ovulation isn't a big deal.  There are women who pay big money for digital kits to tell them when it's about to happen.  Not me.  I just wait for the giant pain that feels like my appendix rupturing.  Yup.  Totally serious.  When my appendix ruptured in 1996, I didn't go to the hospital for 24 hours because I honestly thought it was my regular ovulation pain and only realized something was wrong when it didn't get better.  I dread every month wondering where I will be and what I will be doing when it hits me.  I keep heating pads and Aleve in my purse, my car, and my home so that I am likely to have them at a moment's notice when the pain starts.  And when it starts, it just hits.  There's no real build up.  I have roughly one minute to decide if this is about to be "it."  And Lord help me if I'm wrong.

So, back to yesterday.  As I sat on the sofa last night waiting for my husband to bring home my child, "it" began.  By the time Phil got home, I was curled up in a ball in the hallway, crying quietly so as not to freak out my daughter.  Phil fed Lil' Bit and gave her her first evening medication, but he had to leave to lead Wednesday night services and I was in no condition to take care of her.  Fortunately, my dear friend was nearby and came over to give Lil' Bit her meds, bathe her, and get her to bed while I lay on the couch waiting for the pain to stop.  We got lucky someone was available yesterday.  That won't always be the case.  And not knowing when and where I am when it hits is an even bigger problem now that I have to think about being able to take care of Lil' Bit.

And so it was that today, the infertile woman who cannot get pregnant from having sex went on birth control.  Why?  Because the way that birth control works is by making you NOT ovulate.  For me, it is a singularly magic pill that will make my life so much better and does what no other medication can.  But, because insurance is NOT required to pay for it, I have the privilege of paying roughly $50 a month so that I don't become incapacitated and feel like my appendix has ruptured.  Because it's OPTIONAL.  Because it's not medically necessary.  I call bullshit.  Insurance covered my accutane to get rid of my severe cystic acne and that was WAY more optional than birth control.  [Incidentally, it was while I was on accutane that insurance HAD to cover birth control--because it was medically mandated that I be on it given the severity of birth defects associated with pregnancy during accutane use.]

Furthermore, even assuming that every woman in the world used birth control only to prevent pregnancy and not to treat any other medical condition, it would SAVE insurance companies money because they wouldn't have to pay for all the medical costs involved with pregnancy and it would SAVE taxpayers money by having fewer women with unintentional pregnancies requiring welfare, medicaid, and other social safety nets.  And, quite honestly, if birth control were covered by insurance and more widely accessible, resulting in significantly fewer unintentional pregnancies, wouldn't that go a long way toward making abortion unnecessary?  I can't understand why on earth anti-abortion advocates aren't running around fighting harder for insurance companies to cover birth control!

But, back to my main point.  Birth control is prescription medication that treats multiple medical conditions.  Whether it is appropriate is a medical decision made between a patient and her physician.  Anyone who says otherwise is selling something.  And I'm not buying.

Sweating to the Movies

Today I went out to lunch with two of my good friends.  We used to all work together, but now that we all work different places, although we're all still downtown, we have a standing date for lunch together once a month.  Today's lunch was different for me, however, because in between our last lunch and this one, I had both gotten pregnant and then lost Oliver.  I had emailed them when I got the good news, and Facebook provided them with my grief, but I never got to share my brief joy with them personally.  We talked about many things and I managed not to cry when I answered their questions and told them what had happened.  And I had pie, which almost always makes me feel better.  As we were heading our separate ways, we talked about wanting to go on runs together and making plans to try and do a 5k together sometime.

Many moons ago when I lived in Texas, I would run/walk a 5k every weekend.  I did a few after I moved to Michigan and even managed to complete three half-marathons while I've been here.  But I haven't done anything like that recently.  Today I was reminded that running makes me feel better--this was even easier to remember given how beautiful the weather was.  Anyway, I was also aware that I had put on a fair amount of weight eating things like pie, biscuits, jellybeans, m&ms, and various other comfort foods to make myself feel better.  So, tonight I bit the bullet and got back on the treadmill.  I only walked 1.25 miles, but I also walked to and from lunch today which was about 1.5 miles round trip, so I totaled 2.75.  Go me!

Walking on the treadmill is not terribly interesting, however, so I use my portable DVD player to either watch movies or hook up my iPod for some tunes.  Because I had just swapped out my VHS copy for a DVD (I hear you snickering), I decided to watch Prince of Egypt.  I LOVE that movie; especially the music.  I haven't finished it yet (because I didn't walk long enough for that), but I did learn a few things during the parts I watched.

1)  The music is still amazing.
2)  Watching that movie as a parent is an entirely different experience.
3)  I cannot imagine having the strength or courage or living with the angst of placing my child in the river and leaving its existence to God.
4)  I totally get why a woman pulling a baby out of a basket in the water would want to keep it and raise it because I understand how you can love a baby from the moment you pick it up and never want to let it go.
5)  I cannot fathom the mental disconnect it takes for anyone, pharaoh or otherwise, to decide that killing children is okay because the children are slaves, or a different race, or the wrong gender.

I knew that being a parent would change my life, but I find myself discovering almost daily that there are so many more ways in which being a parent has reshaped or altered experiences that I thought would remain fixed.  What new lessons or experiences will I get from other pieces of the movie?  Only the shadow knows...  Well, okay, maybe not.  But, it does create an interesting incentive to keep on working that treadmill.  And, hey, there's the added bonus of getting back into shape in case we decide we want to try again.  Funny how that works.

A Grief Divided

There is an old saying that has come in many forms, but boils down to:  A joy shared is a joy multiplied; a grief shared is a grief divided.  I have come to understand this "proverb" a little better this week in two ways.

First, I found out that my blog has helped several people dealing with similar issues.  I was so pleased to hear this because that was one of the purposes of my blog.  Although the main purpose was to have a place to get my feelings out so that I could deal with them, opening the dialogue so that other women did not have to feel alone has always been part of this process.  So, even though my blog posts don't usually generate a hundred hits, the fact that it is helping someone is wonderful news to me.

On the flip side, I have been blessed and humbled to read blog posts by other women who experienced loss that, in retrospect, seems so much more difficult than what I faced.  I am amazed at their strength and grateful that they took the time to share their grief with the world because, just as my stories have helped others, their stories have helped me.  They are both women who had the courage and hope to try pregnancy again after having stillborn children.

Here are their stories:

Erica Crum - Remembering Kinley

Lucy - What I Never Knew I Wanted

One of the things I have struggled with as I consider whether I am willing to try again is, how do I not be anxious?  How do I experience joy when I know it can be gone in an instant?  At what point will it be "safe" to prepare for the child?

Recently, I heard another story about a baby born at 27 weeks to a couple who had undergone infertility treatments for several years.  The baby weighed less than 2 pounds and had severe medical issues.  All of these stories together made me realize something.  There's never a safe month.  Babies can miscarry, be stillborn, die shortly after birth, early in childhood, as teenagers, young adults, or adults.  They can die from medical problems, accidents, or other people's intentional bad acts.  There is nothing safe about trying to bring another life into the world and there is no point at which the loss does not hurt.  The trick is in finding the joy in each day, loving them as hard as you can, as much as you can, every moment you have them.  This truth was shown to me in the most recent post from Erica Crum in which she stated:

Today, I'm 29 weeks pregnant, the same day in pregnancy that Kinley was born. Every single day from now on is a day longer than I got to have with Kinley. Thank you Lord for the blessing of each and every day with her for years and years to come!!!!!

This, to me, is an amazing affirmation of living in the moment and taking joy in each day.  We never know how long we, or our children, will be in this world.  So let's all make sure we make the most of it.