Disney and beyond

I returned to Disney World in February to once again run the Princess ½ marathon in Zoey’s memory.  I’m not going to lie—it was rough for a variety of reasons.  I’ve been fighting this foot injury for months.  As a result, my training was sub par.  I also lacked a bit of motivation to run so that didn’t help either. I knew I could make it through—I could meander and still have time.  But as always, I still wanted to do the best I could and make my little girl proud.  The 10k was a Saturday morning and as I started out with about 99% humidity, I decided just to walk it and save my legs for Sunday.  Made it and collected my first medal!  Spent the rest of the afternoon lounging by the pool.  Sunday morning arrived bright and early.  That’s a lie. It wasn’t bright. Nothing is bright at 3am.  On the bus ride to the start line, I met a lovely woman who is a nurse at a children’s hospital.  We chatted for a long time about life, her patients, Zoey and how their hospital has now started a pediatric palliative care program.  It was really a wonderful way to start my day.  We separated when we arrived to Epcot and I headed to the corrals on my own.  The race starts in the dark, but the sun starts to come up just as I head into Magic Kingdom.  I got to see my mom as I turned the corner to run down Main Street and then it was through the castle!  I’ve probably described it before, but the 2nd half of the race is pretty boring—you’re done with the parks until the very end.  It’s mainly on a highway.  It’s hot.  There are some ramps that are unfortunate.  It’s also when my foot started to protest.  Zoey and I had a few talks and while I mainly walked from that point on, I finished upright and didn’t need to stop in the medical tent.  And I collected three more medals: the half, the glass slipper and the coast to coast.  19.3 more miles complete for my little princess.

Every year I’ve gone, I’ve known Zoey should be there too—that things should be different.  This year it just seemed to really smack me in the face. She would have been almost 3.  In the years before, her experience at Disney would have been–let’s be honest– be more about me . But at 3 she’d be really excited to meet Belle. She would recognize Mickey from the Disney channel shows.  And she’d think Marie the Cat looked just like her kitty at home.  Everywhere we went there were little girls her age.  And I pictured myself with her.  Holding her hand as we walked toward the castle.  Holding her in my lap as we rode Dumbo.  Convincing her we didn’t need to ride “It’s a Small World” one more time. And buying her souvenirs.   Zoey has ears from Disneyland.  A dear friend of mine had them made for her before she was even born.  But I never got her a pair from Disney World.  I don’t know why.  So I did this year. Pink.  With her name stitched on them.  And I had my picture taken with them in front of the castle.  And she should have been there. They’d be awfully cute perched on her little head.

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My mom and I enjoyed our time at Disney (Joe stayed home).  We visited all 4 parks in two and half days.  Rode our favorites (the Haunted Mansion for my dad).  Kilimanjaro Safaris.  It was insanely crowded, but we made the best of it and enjoyed our time together.  My mom is a trooper—she had blood clots around the same time as Zoey died and her leg has never been the same.  But I took her from one side of Epcot to the other and then to Hollywood Studios and she never complained.  I think I come from a tough stock and I’m so thankful she’s willing to join me on these expeditions.

I also had the opportunity to stop by the beach while I was in Florida.  I needed that time to refocus, decompress before heading home.  The impending IVF treatment had been weighing heavily on my mind.  I had a lot of anxiety about the shots.  While I don’t usually get squeamish about things like that, giving myself shots in the stomach just didn’t sound like much fun!  When I returned home I thought I was ready to take on this challenge. But things quickly fell off the rails.  It was just a bad week.  Things at work weighed on me.  I was distracted and disjointed.  I spent a lot of time beating myself up about the state of things.  A friend had to gently remind me that I was kind of being a bitch to myself.  And that I wouldn’t tolerate it from my own friends so why was I doing it to myself?

A few weeks ago I started the injections.  First up was Lupron.  And then I added Follistem and Menopure. If you want a good laugh, google “how is Menopure made”.  Most nights the injections went well.  But some did not. I bled. I cried. I freaked out.  Sometimes I had to give myself extra injections because I couldn’t find the right syringe or the needle freaked me out and I wanted to use a smaller one.  Overall it went better than I had expected, but I don’t recommend it “just for fun”.  The real fun began when I went in for bloodwork and ultrasounds last week. These aren’t the fun ultrasounds where they goop your belly and show you a cute little peanut kicking around.  I won’t go into details.  But it sucks.  The ultrasound tech was measuring follicles at one of my appointments and I started to flashback to laying there the first time they started measuring things with Zoey.  The time we found out her nuchal translucency measurement was too high.  And then all those other times they were measuring amniotic fluid or head size or a million other things.   I didn’t want to cry at the office again so I kept it together. I’ve been concerned that the office thinks I’m a train wreck (they would not be wrong but they don’t need to see a full on display!).  My body responded well to the treatment and yesterday they retrieved the eggs.  Again, I won’t go into detail on how they do this, but feel free to google it like I did (mistake).

They retrieved 16 eggs. Many more than what I expected. They were fertilized yesterday and we’re waiting to hear a count of how many took.  They will sit in an incubator and on Day 5 they will be biopsied and then frozen.

I’ve often talked about hope and how we have had to hold on to it through this entire journey.  That is no different now, although I also balance it with a healthy dose of realistic expectation (ok, maybe more than a healthy dose).   It occurs to me that everything comes at a cost.  Yes, we have hope.  But it isn’t free.

Obviously there is a financial cost.  And while my insurance is covering most of it, I’ve still handed over my credit card multiple times for co-pays.  And we are lucky.  Many couples have to pay for this out of pocket.  It creates a tremendous amount of stress.  Do you take out a second mortgage? Dip into your savings or 401k?  Loans?  How many times do you willingly go into debt for this chance?  Success is not guaranteed.

Drugs like this will also take a physical toll on your body.  My side effects have been relatively minor.  I’ve been left bleeding and bruised.  Some women have much more serious side effects.

Emotionally this has been quite a journey too.  Balancing hope with realism.  Trying to stay positive without getting our hopes too high.  Waiting for the next phone call that could change everything.   All things we went through with Zoey.  And yes, it is worth it.  We wouldn’t be doing it otherwise.  But it is difficult.  And then there’s all the moral and ethical questions.  When does life begin?  Think that’s an easy topic?  If so, you’ve clearly you’ve been hiding in  cave somewhere!  Science is amazing.  It’s also terrifying.

I’m not saying any of this to get pity from anyone.  We knowingly and willingly went into this journey (although multiple times the unfairness of it all has hit me square in the face).  It does give me a new perspective and I feel for the other women that are on this journey too.

We potentially have difficult decisions in our future.  But until then, we wait.  For now, everything is completely out of our hands.  And our hope is with 16 tiny little eggs in a petri dish.

**Update since I typed.  We now have 12 embryos. They will be left alone to grow for a few days.  We don’t expect all to make it to the stage where they can be biopsied, but we’re starting with much better numbers than I anticipated. Quite honestly, I am not used to a doctor calling me and letting me know they have “good news” so it was a welcome change!

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