Monday, January 29, 2018

The Mark of Loss

This journey is painful. Emotionally. Physically. Mentally. Financially.


As I sit here, with no shots to take. No pills to gag down. No anxiety of the next test. Or the next transfer. Or the next...something. I wonder.


When did I turn into this person whose life is measured by how many embryos she has left? Or by how many weeks of shots she has left. Or by how many losses I've had?


I was first diagnosed with PCOS in 2014. We have been on this journey for almost 4 years now. Four years that has changed me. Changed my perspective. Changed my ability to see the good in situations. Because I've been disappointed. And I've been hurt. And sometimes you have to build a wall around yourself and around your spouse so that the next time something awful happens, it might not hurt as much. But the thing is...


Now you have a wall. How do you feel when you're constantly surrounded by a wall? The inside boils and the negativity stays around. And the outside, no matter if it's light or dark, can't get in. Without light, I think that we become a shell of who we once were.


It's hard to not let it affect you. In fact, it's damn near impossible. I know that I see things differently. It's harder to see the good in some things now. Sometimes I go days without having a happy thought. Some days are fine. Some days are pitch black.








I digress.


At one point I was worried that when this was finally over, when we finally had the family we wanted I would forget the babies we'd lost. But let me tell you a story...


...During the transfer part of IVF many doctors prescribe progesterone shots. These go in your butt and the needle is very long and very big. It has to get through a lot to get to the muscle. It hurts like hell.


So I ice it. Icing the area before getting the shot really cuts down on the pain. Then after the shot, I use a heating pad to warm the area so that my muscle doesn't knot. Unfortunately, this plan can backfire.


One night after my shot I put my heating pad on. It was a little too hot, but because of the icing beforehand I couldn't really feel the heat. Until it was too late. Not only had I given myself a huge bruise, but, and I didn't know this at the time, I had burned myself.


I tossed and turned that night. I couldn't sleep. I was in too much pain. My skin felt...prickly. That's not really what it felt like, but it's the closest word I can think of. Actually, that's not true. It felt like shredded skin. Like that area had been completed macerated.


For days it felt like that. And then one day I felt the area and noticed that I had a very large scab, like the area was healing. I realized then that I had burned myself, pretty badly. The healing area was half itchy, half hurting, and it had a very think scab over it.


Now, several weeks later, it's completely healed. I only get little pinpricks of pain every now then. But I have a scar. A scar in the shape of the burn. A scar, that I hope, will remain with me forever.


It's the only physical evidence I have of the most recent loss.


One day, I hope that I can tell my children how much we loved their older siblings. How they changed us forever. And how they were so wanted, but how they couldn't stay. One day, maybe I will show them the scar. One day I will tell them everything we did to bring them here.


But for now, I will look at that awkwardly shaped scar and remember everything we've lost. And hope, that everything we want, is coming.

Tuesday, January 16, 2018

Letter to an Embryo-Part 2

Another goodbye, another loss.


We buried you the other day. The ground was frozen so we couldn't bury you very deep. When it warms I want to put some nice flowers with you.


We were doing so well, too. Our numbers were high, really high. Everyone was excited. It felt different, too. I knew this would be it. We transferred two and I thought how great it would be to have twins, that way we'd be done!


But two days after Christmas, after my parents had left and Daddy went back to work something awful happened. I knew it was bad when I saw all the blood and it just kept coming and coming. We went to the doctor the next day and you were still there. It was just you. Your twin never implanted. But you were still there. But we were warned. Again. One week away from possibly seeing your heartbeat and we were warned that there might not be one. Warned that the likelihood that this pregnancy would continue was small. A small probability. Again. This would fail, again.


And they were right. If I never hear the phrase "This pregnancy is no longer viable" again it will be all too soon. I HATE THOSE WORDS. Instead of calling you an embryo they change vocabulary to "products of conception." I hate those words, too.


Our doctor's answer to why this was happening was chance. It's just chance that so far all the embryos that we've transferred have not been good. We went over options: should we PGS test or not? What are the risk of thawing and then refreezing and then thawing an embryo? No one seems to know. Then that little evil voice in my head kicks in "your eggs are bad." "You have eggs. The PCOS is your fault and now this is your fault. You are the reason you keep losing babies. You are what's wrong."


Less than a week later you were gone. There was nothing left. At least this time I could find you. And we buried you, because that's what humans do. We like to remember our dead and visit them. We plant flowers and plants to keep you company. I wish it had been warmer, it was crappy putting you in the cold ground. But, I will get to see you every day and in just a few months we'll put a gardenia there, maybe.


How many more babies will we lose? How many more times will I be told "this pregnancy is no longer viable"? How much heartache does one person get? I don't know. I thought that we had our share, that maybe we were done.


There are lyrics to a song that I listen to a lot when I think of you:
Who would you be?
What would you look like,
When you looked at me for the very first time?
Today could have been the next day of the rest of your life.


Who would you look like? Whose eyes would you have? When you laughed would you sound like me or your dad? We'll never know, at least not on this earth.


You will always be in my heart. You will always be loved. And I will miss you forever.

Friday, October 6, 2017

Letters to an Embryo-Part 1

Are you ok? I mean, I know you're frozen. It's kinda weird, right? You're a frozen five day old embryo and I'm talking to you. I hope you're okay. I hope you don't end up loving cold weather and snow and things like that because of this. I mean, your dad would love that. He'd have someone to go skiing with. The only thing I like doing on cold days is staying by the fire wrapped up. But maybe you'll like that, too. Anyway. You and your eight brothers and sisters went into the cryofreeze together. I wonder how many of you we'll get to meet. I wonder how many of you I'll mourn.

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Well. It's been two months. We're thawing one of you little embabies out. I hope you survive it. My greatest fear going to the clinic today is that they'll try to thaw all of you and no one will make it.

But you made it! You, little embaby survived the ice age! It was so cool watching you go in. I feel so lucky to be able to have watched it, not many people get to, you know.

Here you are:

Our little thawed blastocyst.

Stick, baby, stick!

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This waiting is awful. Is that you sticking? Is that you burrowing deeper? Are you the reason I hate the smell of peanut butter now? I am so anxious. And so tired of waiting. I'd thought by now I have a strong feeling either way, but it looks like we'll have to wait until beta day to know. If I can wait that long.

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Am I a mother now? Technically I AM pregnant. They don't call us PUPO for nothing! But if you don't make it, either now or later, am I a mother? I have loved you, all of you, since the moment I knew there 9 of you. I mourned the 13 of you that didn't make it. Even though you have no consciousness, not yet anyway, no heartbeat, you're still mine. And even if I only get to carry you for two weeks, I will consider myself lucky.

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Tomorrow is the day! We find out if we are lucky enough to keep you with us!

I wonder what kind of person you'll be? In 9 months will I be able to kiss your nose? Will I teach you about kindness and how to be a friend? Will I watch your daddy snuggle you and teach you how to feed the dogs? Will I find you snuggled up with the dogs, all of you snoring? In 9 months will I be able to hold you, to smell you, to never let you go? Will you let me take care of you and love you forever?

I can't wait to find out.

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Well, here we are. Moments after two phone calls. One that brought a little hope. And the other than smashed it all away. The HCG test came back. It was 12. Technically, it means that you're there. But really, it means that you're there and not doing well. We're going to test again in a few days so grow, grow, grow! What could I have done differently? Did I eat the wrong thing? Did I not drink enough water? Could I not provide a nice home for you to snuggle into? Did you know that I started looking at onesies? I thought, since you were making me feel all these things, that you'd get to stick around. And I got my hopes up. I got them up too high and now they're crashing down. But there's still a twinkling of a possibility that you're in there. Really in there.  So come on little embaby, grow!
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Still waiting. The waiting is the worst. At least it's active waiting; we're still doing progesterone shots, I'm still taking medications. But we're still waiting. It's hard waiting, too. Because we're basically waiting to hear if you're real or not. In just a few days we'll know. This is the meanest trick of all. To KNOW that you're there, and to feel all the symptoms. But for there to be the possibility that you're not going to be there for much longer. Your daddy (is he a daddy yet?) is hoping that you're in there. We're all hoping you're there. There's so many people praying and wishing and hoping for you.
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Little embaby!! You are growing so much! We got our second beta back and it was 87! That's almost EIGHT times what it was! You're definitely letting your Mama know you're growing because she is feeling just a little bit nauseated most of the time. But that's okay. You just keep growing and growing and getting nice and big and strong so we can meet you in 9 months! We are so excited that our numbers went up; we're so proud of you and are so happy that you're sticking!
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You are definitely letting your Mama know you're in there today! Nausea and some cramps-but you keep growing! Keep doing what you're doing! Don't you worry about me-I'll do all this and more if it means I get feel you grow over the next 9 months! Keep growing, little one!
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Well, little one, you did it! I am very proud of you! Beta went up to 466!! We're doing an early ultrasound to make sure you're where you're supposed to be. I can't believe this is happening. I am so excited and so scared that something will happen. Keep getting bigger! We already love you so much and can't wait to meet you in 8 months!
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So we had our first OB ultrasound today! We saw your little home for the next 8 months! We couldn't see you, you're a little too small right now. But it was so nice to see where you are! We go back to see your little heartbeat in a little over a week! Your Daddy thinks he knows what your name will be but I promise you I won't let him give you ALL those names! We love you so much little peanut!
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This is my last letter to you. We had an ultrasound today and you're gone. I'm so sorry. I'm so sorry I couldn't keep you safe. I'm so sorry that I couldn't give you what you needed. We are absolutely heartbroken. Your Daddy says that it was so nice having you for the 7 weeks we did. I wish I had enjoyed it and hadn't worried so much. But I am so so grateful I got to be your mommy. I wish that we could have taken you home. I wish that I could have kissed you goodbye. I'll never know what your laugh sounded like, or whether you like crunchy or creamy peanut butter. I'm so sorry my love. I'm sorry I've failed you. I hate that you're going where I can't follow. I'm your mother, I'm supposed to take care of you. Goodbye, little one. We love you.

Thursday, July 13, 2017

What Have We Been Up To?

These last few months have flown by. I meant to do a post all about the Race to Parenthood, but I looked up and it's mid-July! So, I'll have to sum up all that we've done these last few months.

The Race to Parenthood was such a wonderful success! It was so much fun and Trey and I were so touched that so many of our friends and family showed up for us. We ended up getting a $4500 grant towards our IVF!

In May we spent the month TRYING to relax in preparation for our upcoming treatments. We spent a week with my family in Ocean City, MD. It was nice to be away for a bit and see some places we normally don't get to see.

I had hoped to start our IVF medications a lot earlier in June but we had a minor setback. At the time, I was devastated. It wasn't the first time I've wanted to cry in my doctor's office, and I'm sure it won't be the last. It felt so huge at the moment, but looking back, yes it was disappointing news, but it wasn't the worst thing that could have happened.

We were finally able to start our IVF medications at the end of June. Having already experienced giving myself shots last year when we were doing injectables I thought that I wouldn't be nervous the first night.

Well. First of all I had been warned by my nurse that one medication burns. So there was that anxiety. Then, I felt just really jittery and anxious and excited because we were FINALLY starting.

Last year I never would have thought that we would need IVF. Signing up for the Race to Parenthood grant was really just something to do, since I was positive that we would be pregnant way before the actual race. Even when we were chosen I still had a teeny tiny bit of hope that we wouldn't actually need it. Fast forward six months and I am excited about starting IVF, something I never, ever thought we would need. When I first started going to support group meetings I remember hearing these women talking about going through two, three, four IVF cycles and using all this terminology (that now seems like a fluent language to me) and thinking how brave and amazing they were, but also feeling thankful because *I* would never need it. HA. Oh sweet, naive Lara.

Anyway, back to the injections. We were finally starting! And I was nervous. I prepped my needles and held them in my hand and had to cheer for myself while I stuck them into my stomach. And yes, it burned. AND IT KEPT BURNING. People told me that ice packs would be my friend-and I wish I had understood what they meant that first night.

It eventually got easier and easier. Take everything out of the box, mix the one med, insert cartridge for the other med, stick needles on, pinch skin, stick it in, and throw away said needle. Simple.

Something else I was warned about was a feeling of "fullness." Fullness, my patootie. It became hella uncomfortable in there. It felt like I was carrying around a whole bunch of golf balls. I couldn't sleep because I am a stomach sleeper. When I tried sleeping on my side gravity tugged all the golf balls down causing extreme discomfort. The only way I could sleep was on my back, but I HATE sleeping on my back so in short-I didn't sleep very well.

The following is an in-depth account of my egg retrieval (it's mostly for my recollection but y'all feel free to read it, too!):

I wish I had a picture of my last ultrasound y'all. There's a term called "hyperstimulation." It can become dangerous, but the doctors are pretty good about managing those of us who develop it. At my last ultrasound, 3 days before my retrieval, I saw the coolest thing. Usually when I get these done, the doctor has to move the wand from one side to another to capture each of my ovaries. This time, my ovaries were so enlarged and swollen that they were literally smooshed together and he didn't have to move the wand at all to go from one ovary to another.

At egg retrieval I was super uncomfortable. I was grumpy because I was tired because I couldn't sleep well and I was grumpy because I was uncomfortable. I had to pee all the time. I was so tired. And I was so ready to get those eggs out of there!

We arrived at the clinic really early in the morning, signed some papers, changed into a gown, and got an IV situated. One of the nurses found a vein in my wrist and she made it pop up so that I could feel it. That bad boy was rolling all around-it felt really, really weird. Once the IV was in (in my hand, not my wrist) I started to feel off. My BP had been elevated when they initially took it so I'm pretty sure they gave me some meds to calm me down. And then I started to feel really overwhelmed. I don't even remember what I was thinking about, if I was thinking about anything at all, but I started to cry. I tried to hold it in because I didn't want to worry Trey (I mean, I was about to go into a room and have things cut open so that eggs could be sucked out, should I really worry him more??!) but he was sweet and so comforting. He let me feel what I needed to and was strong enough that I was ok just letting go.

Then it was time to go in; Trey had to go do his thing so I went in alone. Once I got in there things went very fast. People were scurrying around doing this and that. The anesthesiologist put an oxygen mask over my face and then stuck a tube in it that had a weird smelling gas coming out of it. After several days of thinking about it I now know that was the thing that knocked me out initially.

When I woke up, groggy groggy groggy, the nurses were trying to get me into the chair to wheel me back into the room. Um, hello?? Literally JUST woke up. Turns out they were hurrying because there was another retrieval behind me and we had been there in awhile.

I was really uncomfortable. Actually kind of in pain. They offered me a ginger ale for any nausea I had and I drank some. Then they made me stand up and walk to the bathroom. Apparently I had to go pee before they'd let me go. It seemed like each step the nurse was telling me to open my eyes. Keep your eyes open. Why won't you let me go back to sleep???? Keep your eyes open. Aaaarrrgghh. Sitting was not fun. Going to the bathroom was not fun. In fact, going to the bathroom became my least fun activity for a whole week.

I finally made it back to my room and at some point indicated I was hurting. They gave me a teeny tiny bit of fentanyl which I will NEVER ask for again. My BP dropped and I felt so lightheaded and nauseas. They immediately gave me some zofran which helped immensely. Apparently I had lost quite a bit of color in my face as everyone was remarking how nice it was that I was getting some color back. When I was finally starting to feel somewhat better and they liked where my BP was I was able to get dressed and go home.

Riding in the car-not fun. Every bump and jostle and small movement of wind felt like a knife tearing through my abdomen. That was probably one of the longest car rides home. And the clinic is only about 20 minutes away.

When I got home I parked myself on the couch, in a semi-reclining position, took some pain medicine and went to sleep. Over the next several days I remained on the couch, if I wasn't in the bed. I took my pain medicine. I slept through television and movies. The few times that I really had to pee I prayed for the strength to walk and sit through the pain and stumbled the five feet to the bathroom. I don't know how these women are who go to work the next day but I was not one of them. We retrieved on a Wednesday and that following Monday I went to work, but I really don't think I was ready to.

One of the funniest things that happened at the retrieval was how adamant the nurses were that I not make any legal decisions for 24 hours. I had to sign a piece of paper stating that I would not make any legal decisions. Trey and I could not get over how weird that was!

All in all, we retrieved 32 eggs, 26 of which were mature and could be fertilized, 22 of which were successfully fertilized.

And then we waited for the call to find out how many embryos we had frozen.

I'm so thankful that we had the means and support to be able to do IVF. There's a part of me that's still angry we had to do it at all, but if this is what it takes to get us a baby, we'll do it over and over again.

More later on some other stuff. Remembering all of this, even though it was just a few days ago, has left me feeling overwhelmed again.

Monday, April 24, 2017

Listen Up! Infertility Doesn't Just Affect Women

This post during NIAW is written from my husband's perspective. Even though he is biologically "fine," infertility affects him as it does me. This is his essay he wrote for a grant we applied for. As you can see, while I am the more serious one, he definitely brings laughter into my life. He has been my rock over the past several years and has kept me sane. He's reminded me that it is still ok to laugh.




 My path to attempted parenthood started off similar to others, and for the same reasons.  Lara and I had been talking about having kids ever since I got out of the Navy and had a regular work schedule.  Our family includes two goofy and sweet dogs, but I always wanted to add children to the mix.  Every time we visited our nieces and nephews, after holding and playing with them, I always felt longing and wishing that we could have children of our own.  But since we made the decision to start trying, we could never figure out Lara’s ovulation cycles. 


“Wait, ok,” she would say while hovering over a calendar, “I ovulated last time two days early, which altered the ovulation moving average to 3.567 weeks, but my basal temperature hasn’t changed just yet so that means I’m a day late, which means I should be ovulating…let’s see…tomorrow?!”  I’d scratch my head at the charts and graphs she had sprawled out across our kitchen, not to mention the kooky equations she was using. “Why not worry? We could just try every single day!” I added with a smile.  The face melting look I got told me that my suggestion was not a viable option.


Despite repeated attempts to predict Lara’s ovulation cycle (and a chicken bone necklace on my part), we sensed something was amiss, but couldn’t really determine what it was.  Lara would watch television, and a generic nuclear family with 1.5 kids and a baby would be featured.  Lara would look at it wistfully and sigh, “I wish I had a bun in the oven.” Because I am a proud male descendant of Neanderthals, I am completely oblivious to subtlety and remarked, “Oh, buns are gross. I prefer biscuits.”


It wasn’t until I was in bed, after hours spent puzzling as to why Lara pelted me with pillows, that it hit me: “By golly, you were talking about wanting a child!”


So after months of trying, our gynecologist finally gave us a referral to a fertility specialist who officially diagnosed Lara with polycystic ovarian syndrome.  “What does this mean?” I asked. “It means it’ll be difficult for us to get pregnant.”


I was devastated. Did this mean we’d have to resort to dressing the dogs up in baby clothes? Who would I tell my awesome dad jokes to? “Stop being so dramatic,” Lara replied. “It means we’ll have to start seeing the fertility doctor to check if I’m ovulating regularly.”


As it turns out, Lara was not. Despite my chicken bone necklace, we’ve had to resort to hormone therapy with no success.  After the fifth round of therapy and numerous test, we’re slowly starting to come to the realization that we may have to resort to IUI or IVF as the end point, as well as paying for a majority of the costs out of pocket.  But as I explained to Lara, my view is that it’s just one more hoop to jump through to have a kid and totally worth it.

As most of you know, we've decided to skip IUI and to try for our first IVF round, hopefully soon! And as my husband says, whatever hoops we have to jump through, we will, because in the end, having a baby will be worth all the hoop-jumping in the world.

Sunday, April 23, 2017

Listen Up! The Lonely Journey of Infertility

Today marks the official start of National Infertility Awareness Week or NIAW. Throughout this week I'll be posting on different topics and different experiences on my infertility journey. The first post is a hopeful post on how infertility doesn't automatically mean loneliness. 

The journey of infertility. Oh how to explain this to people who don't understand? 

A year ago I was asking my GYN for a referral to a fertility specialist. I remember sitting in my car, alone, crying after that appointment. Even though I wanted to move forward, I hated that I had to take this step. I thought I would be joining the ranks of sad, angry women who thought all the time about stealing children from hospitals or who were so drugged up from infertility injections that they couldn't function. 

A year ago I sat in my car, alone, crying because I thought that I would lose all my friends, that my family would shun me and that my husband would eventually give up on me. I sat in my car crying because in the span of a few minutes I had completely changed, my life had completely changed and I was about to go back to work to people who would never know what this felt like. How would they react? How would I get through this? 

A year ago I sat in my car ,alone and crying, and made the first, of a lot, appointment with my RE. A year ago I couldn't have imagined how far I would go, the friendships I've made, the thing I've done, the strength of my marriage. A year ago. So much has changed. 

The lonely journey of infertility can be really lonely. And I know that sounds redundant so let me explain. Everyone's journey is different. Everyone has a different reason for joining the infertility family and so in that way, everyone is "alone" on their journey. Even though another woman may have PCOS, her journey and mine are not the same. But you don't have to be alone in the walk. You don't have to be alone in the darkness. 

I felt alone for a long time after that day. For weeks I tried to make sense of what was happening. Why it was happening. I tried to atone for my sins, because surely that would stop this madness. Each step we took, each new treatment we tried was always I step I had felt for sure we would never have to take. I was angry and frustrated and I hated myself. I couldn't understand why my husband stuck around. 

And then I went to my first Resolve support group. I was late, because why not? When it was my turn to share I could barely get through the first part of my story before tears came. I felt shame and embarrassment that I couldn't even hold it together for strangers. And then I looked up. They were all looking at me but not in a judgmental way. Some even had tears in their eyes. They all were looking at me in empathy-they had all taken this same step before. All of a sudden I felt like I could breathe again. I stopped screaming at myself. The hurt in my heart lessened a little bit. I was surrounded by people who knew. With them I didn't have to sensor my feelings, my frustration. And I didn't want to. Each month I went to a meeting and each month I connected with someone who knew what I was going through. Each month I met another amazing person. And each month I felt more hopeful. 

I am lucky enough to live in Richmond, VA where there is a very active infertility community. In fact, we are so active that each year for the past four years we've held a race to raise grant money to help sponsor the journeys of five very lucky parents-to-be. 

This year, my husband and I were so fortunate to have been chosen as grant recipients for the 2017 race. We, along with four other couples, spent the past several months planning the race, sharing it with family and friends, and spreading infertility awareness. 

Yesterday was the day of the race and it was one of the best days of my life. While I can't say that this journey has been easy, I do not regret the people that I've met, the friendships that I've made, the experiences that have made me a stronger person. It's taken me a long time to accept infertility as part of who I am. I have come to love my journey, I wouldn't change it for anything. The people I've met in the past year are some of the strongest people I know. They have held my hand as I struggled, they have let me cry with them. My infertility family means everything to me. 

And just like that, I'm not alone anymore. 

Sunday, April 9, 2017

Anxiety

Lately, I have been feeling anxious. I have been trying to think of things to do so that it feels like we're moving forward. The race is in less than two weeks (!!!), which means that we'll soon start the "getting ready" portion of IVF. I am excited and terrified. I was reading back through a text conversation with a friend last night. Hard to believe that just a few months I was so sure that we would never have to try IVF. And yet here we are. Just a few short weeks away.

I realized why I have been so anxious the last several weeks. IVF is not even remotely close to other procedures we've tried. We WILL be making babies, they'll be only 3 or 5 day old embryos, sure, but that's more than anything I've ever had. And I think that's why I'm anxious. Because before, even if there was fertilization, I never knew it. But this time, I will KNOW that there are embryos in there. And if they don't stick, I will have actually lost something.

Did you know that you can see your embryos before they're transferred? You can actually see the little tiny microscopic embryos before they go in. There's an acronym that's used for women in between transfer and confirming a pregnancy two weeks later: PUPO. Pregnant until proven otherwise.

So there you have it. The reason for my anxiety.

I sincerely believed we would never have to utilize IVF. I really did think that the other things would work. But they didn't and here we are.

Just a few more weeks. A few more weeks until, what I think will be, the most emotional roller coaster time of our lives.

Another "hurry up and wait." I hate "hurry up and wait."