Apr 27

Tough Choices

I got a text message, this morning, from a family member who’s expecting.  They just found out the sex of their baby.  I’m so excited for them.  So happy!

As happy as I am for them, I can’t help thinking about the day that we found out about our baby girl.  It was great news.  We were so excited!  And then we got the other news.  We had already had some suspicions that there was something wrong, but we weren’t expecting what we heard.  The day I first heard “Trisomy-18” will be etched in my memory until the Lord calls me home.

I’ve been praying, as I’m trying to establish this ministry, for families who are hearing what we heard (or any difficult prenatal news).  Today, especially, they’re on my heart and mind.  I am rejoicing for my family’s good news, grateful that they are not going to need any of the things I’m trying to establish here, and remembering what it was like to find out that we did.

Every pregnancy comes with tough choices.  Naming a child is equivalent to labeling them for all of their natural lives.  Are we going to breast-feed or go with bottles?  Is it better to co-sleep or set up a separate bed for baby?  How do we feel about vaccines?  Are we favoring natural birth, homebirth, hospital birth with medical assistance…how do we feel about Caesarean birth?  There are always choices and it complicates everything when we’re responsible for another person.

Prenatal diagnosis comes with a different set of choices, though.  Even if the problems show up on ultrasound, there is the decision about amniocentesis, for confirmation.  Then there are decisions about whether to terminate or carry to term – supposing that the baby even survives.  And if carrying to term is chosen, how severe the complications are can affect the selection of birth facilities…

When my husband and I found out that Zoe wasn’t developing normally, we were offered the opportunity to have an amnio.  Having been through 2 miscarriages the previous year, knowing the rates of inconclusive or false positive results, and being aware of the increased risk of miscarriage, we decided against it.  We weren’t sure what purpose it would have served, anyway.  We were already in love with our daughter, making her life infinitely more valuable than words can say.  Termination was never on the table.

Even without those choices, though, we had difficult decisions to make.  And we knew there was the possibility, however slim, that our daughter would be a survivor.  Many parents of prenatal diagnosis aren’t so lucky.  They know that their child is receiving a death sentence.

How do you face the decisions that come with the knowledge (usually a blindside, by the way) that your child (children, in some cases) has one or more serious physical problems?  No matter what choices you make, you relive them thousands of times in the coming days, weeks, months, years…

I don’t have any answers for these questions.  I don’t know how I faced those decisions.  I know I spent a lot of time in prayer, allowing my faith to influence me.  I know I had a great support system – in my husband, my church, my family, my friends, medical staff, total strangers – that helped a lot.  I know that the decisions my husband and I made were the right ones for us – from the decision to carry Zoe to term to the decision to sign the DNR to the decision to hold her in our arms, surrounded by our family, while her beautiful soul flew home to eternity.  But I don’t know what decision is right for anyone else.  I know there isn’t a formula to help answer the questions.

Here’s what else I know.  I know that God is Sovereign.  He knows what’s going on and He chooses to allow it.  That doesn’t mean it’s His plan, though.  He never intended for death, fear, pain, or separation to be part of our existence.  He made us to have eternal relationships, while we walked with Him in a world that was perfect.  All of the pain was part of the curse, resulting from the Fall; it didn’t come until later and wasn’t part of the plan.  I know that He can use the pain and loss (here I am!), but not because He intended it.  I know that, no matter what, He loves us.  I know it’s okay to be angry and feel betrayed.  I also know that I will probably never understand.  But I still choose to believe.  And that’s been another difficult choice.  It still is, sometimes.  It’s a tough choice I have to make every day.

My prayers, as I wrap this up, are with those who are there now.  I know what it’s like to face those choices.  I’m still facing some of them, two and half years after Zoe’s death.  I hope and pray that the Lord can use the choices that I made.  Even if He does, though, there are still people making those tough choices right now.  And they need help!  I don’t know how much help I can be, but I’m out here.  You’re not alone.  My thoughts and prayers are with you today, and you’re always on my heart.

Apr 26

Today’s checklist

Well, I’m back!  For anyone who wasn’t sure I would be, here I am!  Praise God, by His grace, I’m back!

For those of you just checking in, this is only my second post, so you haven’t missed much. Basically, I’m researching the possiblity of  launching a ministry, and I started a blog as a way for people to keep up with what I’m doing and offer feedback.  In the interest of said feedback, some notes: 1) any comments you post have to be approved (by me) before they’re published (so if it’s personal, I won’t make it public); and 2) if you’re interested in contacting me, you can e-mail me at: zoesmom@aplaceforzoe.com    Okay! Here we go!

Today was a busy day for me. I made a ton of phone calls. I’m reading a book (as always! This one is on grief in Christianity).  I am going to be receiving, tomorrow, some video resources (on loan) from a local pregnancy center, as well as additional resources that they have available.  I set up a meeting with my pastor, to present the ministry a little more formally.  I contacted our local hospice office, establishing contact and requesting resources; someone from their development department is going to get back to me.  I got a phone number for another local (hospice) office.  I announced the blog’s launch on Facebook.  Hmm…that might be it.  I’m probably forgetting something.

I’m looking forward to tomorrow.  I have an informal blog lesson set up, so I can learn a little more about how to set things up the way I want them.  I’m hopinig to be able to keep a current reading list up, and gets some resource links posted, so that people can use this as a jumping off point.  I’m also excited about figuring out how to rearrange an post some of my own pictures.  This is gonna be fun!

Update: I added a page for Scripture this evening.  It isn’t finished yet, so check back often to see what’s been added. 🙂

Apr 23

I’ve Got A Blog!

Well, I’m officially a blogger.  I never thought it would happen.  As I’ve been doing research, though, a friend suggested that I set up a place to organize my thoughts.  Doing it a little more publicly (or a LOT!) adds a level of accountability that I find helpful.  And it allows a lot more accessibility for those who are interested in what I’m doing.  Perhaps more importantly, it makes my thoughts available to people who don’t necessarily know me personally.  While I find that somewhat intimidating, I still think it’s a step I need to take.  So, here I am!

The research that I mentioned above is explained a little better in my about page, but I’ll say a little here, too.  In 2010, my husband and I had a daughter, Zoe Sophia, who was born with Trisomy-18.  She was diagnosed prenatally, which forced us to make some choices.  Whether to continue the pregnancy was never an issue; we loved her before we knew anything was wrong.  Knowing she was only going to be with us for a short time only made us love her more fiercely.  It made every day priceless, because we had no idea how many more we would have.  As a result, it because almost an obsession, for me, to make a place for her.  I wanted everyone to know that she was precious to us, and deserved as much investment as any of our other children.

Zoe’s life lasted only 7 and a half weeks.  The first two were spent in NICU.  We didn’t know, for sure, if she would ever be able to come home.  Preparing a place for her was always a step of faith, because we didn’t know if she would ever use it.  Telling our other children that “this is going to be Zoe’s room” was always bittersweet; what if she never used it?  We chose to focus, instead, on the possibility that she would.  We prepared for her cautiously, and differently (we didn’t buy her any clothes bigger than 6 month sizes…), but we prepared as purposefully as for each of other little ones.

The reason I chose to name this blog “A Place For Zoe” is because I think that life is a lot like our prep for her.  We don’t have any guarantees.  None of us knows how much time we have with the ones we love, or how much influence they’ll have on us, or vice versa.  We chose to name our daughter “Zoe” because it means “spiritual life.”  And we spent time making a place for her.  She’s gone now, but I still find myself needing to make a place for Zoe – it’s just a different kind.