One month milestone

The night before everything, we were at my mom’s house, celebrating her 55th birthday.

Among topics of conversation were my growing belly, how we would handle special visitors after our child was born (my mom, Tyler’s dad & step-mom, and Jordan being the first we’d like to introduce to our newborn in January), and how excited we were for our first ultrasound the next day.

On the 19th of September, we drove around, feeling  a bit lost and nervous as we tried to find Lasalle Hospital where our ultrasound was to take place.

Once inside, a kind guide showed us where to go, and we waited until my name was called.

When it was our turn, I walked into the dark ultrasound room, hopped up on the table, told the doctor that we didn’t want to know the gender of our child, then, at around 11 a.m., we had our very first glimpse of our beautiful baby.

Those were our last minutes of peace and joy with our child.

Our first photo of Henry. Our beautiful son.

 

I’ve written about what happens next in detail in other parts of this blog (here and here and here).

I just wanted to remember our happy anticipation of this day, because it has now been exactly a month since I’ve really felt happy, calm and peaceful in life. It’s one of many firsts that are coming up quickly, including my one-month physical separation from Henry.

Be well, thank you for reading.

Mel

Advertisements

A story of lost hopes and dreams, or, the little things

When you lose a child before he or she is born, parents like my partner and I often aren’t recognized in our grief and sorrow.

Even though we have been sheltering ourselves from the world, we have still managed to hear the stinging, slap-in-the-face comment from some well-meaning friends and family of “you can just try again.” Or people liken our experience to a miscarriage.

I even had one family member call me the other week – it was a nice intention, checking up on his niece, but he did all of the talking. He went on and on about things that are not meant to be, and how he and my aunt actually went through the same thing when they were young and weren’t ready to have kids, so they had an abortion long before my cousins were born. He then told my mom that I sounded fine, and didn’t see what the big deal was. I’m young, and it was just a fetus – why don’t I just try again?

How am I supposed to talk to someone like that, though? He called with a certain agenda, to “make me feel better” but I felt he was so out of touch with what actually went on, and he gave off a vibe of “been there, done that, it’s not a big deal,” so I just said “uh-huh” until he felt like he gave me sufficient ‘help’ and I could just hang up and get back to my mourning.

I know it’s difficult to talk to us. It’s difficult for us, too. I know there are no words to adequately express anything. There isn’t anything nice anyone can say about losing a child. Any silver lining this dark cloud has has already been exhausted by us (yes, we ended Henry’s life before he could really suffer, yes, we at least had five whole months of being happy expectant parents, yes, it wasn’t meant to be, bla bla bla). We don’t need to hear filler, we don’t need to be distracted from our pain – that’s only going to make us feel guilty for leaving Henry behind. We’re not there yet.

Let me gently spell it out for anyone who has thought of, or wondered these things:

No, it’s not the same thing as a miscarriage or electing to have an abortion because you’re not ready to be a parent (absolutely no judgment for those who have had an abortion for whatever reason, and we do feel terribly sad and sorry for you if you had a miscarriage, which is also an enormous loss – I’m just saying what we’re going through is in no way the same thing as these).

No, we’re not going to “just” have another kid – we didn’t lose a puppy that we can just replace, and we didn’t simply “lose” our baby. We actually chose to end the life of our son. He had a fatal disease. His life was ripped from my womb through dose after dose of medication, and I gave birth to a tiny, non-viable, dead baby. We gave him a name. He is part of my family. We love him and cherish him, and, we already have to stick up for him as a baby that counts in this world.

And our grief is real. We’re not going to just ‘get over it’ and make another one to fill the void Henry has left. If we have other kids, it will be on that kid’s terms, and not as a replacement for the one we had to say goodbye to.

The type of loss parents like us experience is a loss of dreams and hopes and the little things we did in preparation for Henry in our lives.

I had a closet full of maternity clothes that I had not even had the chance to wear. When I picked out those clothes, I had bigger, winter-sized me in mind. And another full set of clothes sent to me from a dear, beloved friend. I was even starting to look for a winter coat that would encircle my rotund shape.

We even had a package in the mail that was en-route from a dear friend in New Zealand for our baby. It arrived after Henry was gone, and I didn’t open it. All the maternity clothes are packed away and hidden at my mom’s house to stave off any reminder of the ignorant bliss we lived in for nearly half a year.

We had an entire bedroom set up, and a few months prior, we rearranged our house to make room for baby. We moved the rabbits downstairs, and my step-son in to the rabbit room. My step-son’s old room became the baby room. The room had been filling up with so many wonderful gifts of clothes, furniture, books, baby monitors, and many other useful things. It still smells like a baby room, and even though it has now been emptied, I can’t go in there.

We were looking in to daycares here and in the city we might be moving to in a few years, and were giving hints for the baby shower friends and family were planning for us and had a registry all drawn up.

We were wondering what this little person was going to be like, and were already figuring out the types of books we would read to our precious little one. We definitely wanted him to be well-versed in imagination and happiness, with an early introduction to good music and science.

We were preparing for months of sleeplessness, and rearranged our room so that our bassinet would fit on my side of the bed. We even bought a new dresser that better fit the new setup. We had everything planned for how long we were each gong to take off work once baby was here.

We thought we passed the first trimester miscarriage danger mark that all parents-to-be endure. We assumed we were in the clear. I could feel baby kick nearly constantly, which brought me so much joy. My food preferences and body had all changed for baby. I visualized daily play and snuggle time with baby on my living room floor on a blanket I was making for the occasion. I pictured myself spending my days outside walking, introducing Henry to animals, trees, and how the outdoors smells and feels, and couldn’t wait for Henry to meet and play and grow up with two other newborns of my partner’s best friends.

This baby was real and already the most important part of my life.

My dreams and hopes shattered at around 11:00 a.m. September 19 when that first ultrasound doctor didn’t tell us that our baby measured just fine. Now, we’re that couple, walking the nighttime streets with our heads bowed low, just wandering, just the two of us – no longer three. We’re mourning Henry and the dreams and hopes he brought with him when I first saw that positive pregnancy test.

We lost our child before we got to know him. We’ll never know what he would have looked like, sounded like, what foods he would have preferred, what hobbies he would have picked up, and the relationship he would have had with this step-brother. We mourn our son as though he has always been here, and our nerves are sensitive and raw on some days.

Please feel compassion for us before asking us if we’re going to try for other kids, like Henry never mattered. Please don’t wonder how long it’s going to take us to move on. We move with – not away – from the child we made and love who is walking on the other side.

This song has been with me since last night, thankfully replacing the “I lost my baby” torture song. I don’t understand what Grimes says in the song, but the feel of the tune is about right, and the video is interesting. And, because sometimes I feel like a mad-woman, I like watching the ladies mess up their faces with makeup, or paint, or whatever, and their dancing.  Enjoy.

With love,

Mel

Two weeks

Two weeks ago today, we had our first ultrasound. September 19, 2012 is the day we found out that everything was not OK.

While an ultrasound uses sound vibrations to get an image of babies inside their mummies, these sound waves crashed into the depths of our lives and reverberated throughout the universe in a spiral until it came to a deafening halt on September 28. We’re now trying to pick through the rubble and aftershock.

For today’s entry, I am sharing the note that I wrote on facebook once we had a diagnosis for Henry, which was the Monday following our first ultrasound.

Henry’s first ultrasound photo, before we knew.

My news from the last week

Friends,

Mine and Tyler’s lives have changed drastically in the last week. It began in May, when we had the wonderful news that we were expecting a little one to grace our homes with joy sometime in late January. We eagerly anticipated our first ultrasound, which happened last week, on September 19. We had no idea anything had been awry during my pregnancy – no false contractions, bleeding, or anything else – just a regular, easy pregnancy to date that brought us a lot of joy.

During our first ultrasound, we were, at first, elated. It was our first time seeing our child. We found him to be the most beautiful little baby, and we were so proud. He was funny because he moved away from the ultrasound wand when the doctor pushed in a little harder to get a clearer picture of some part of his anatomy.

Unfortunately, this and the feelings of him kicking and wiggling from the inside will be our only memories of him.

The doctor informed us that our little boy’s limbs were really under-developed, and his skull was too large for what a typically growing baby at 20 weeks measures. So much so that they actually pushed my due date to the end of February. We were then handed over to St. Justine’s Hospital to see a genetic specialist, but we had a few days to wait before getting the phone call that would confirm our appointment.

For the next few days, I was a zombie. I cried nearly constantly, and only ate for the benefit of the baby whose diagnosis we had yet to learn. We had no idea what could be wrong, and tortured ourselves by Googling what he could possibly have. The doctor speculated that it could be thanatophoric dysplasia, or one of many forms of dwarfism. We prayed for any form of dwarfism, hoping that we’d be one of the lucky families that learns that everything was actually okay withour son – that he was just growing a little slowly and would need more time, or that it was because of me – sometimes, women with non-typically shaped uteruses show smaller babies who are actually growing healthy and strong. But this wasn’t the case.

I forced myself to think positively for a few days – what could it hurt? I was dismayed at the challenges our child would experience at being different, but anything was better than hearing a death sentence for our unborn child. But we were not so lucky.

Finally, our appointment to see the genetic and fetal bone-formation specialists at St. Justine Hospital came this past Monday. We sat around nervously waiting to hear if we could get a diagnosis so that we could either stop worrying, or, at absolute worst-case scenario, be faced with a tragically difficult decision.

Our ultrasound doctor – who as also our fetal bone growth specialist doctor, was simply fantastic. She said she would go piece by piece, organ by organ, and see if she would be able to let us know why we were there. Not long after investigating, she was able to definitively diagnose our son. It was the worst news we could possibly hear. She said that our son has osteogenesis imperfecta, type 2a. It was fatal, and she was very sorry.

His bones had not been growing properly because they kept breaking – even in the safest place for him to be – in my squishy womb.  But we can’t even protect him from harm in there. Ater we left, four specialists met to go over the results of our ultrasound, and they unanimously ageed that he had this deadly disease, where bones don’t grow properly – the mineral foudation that makes bones rigid simply wasn’t there. His ribcage wasn’t growing in a way that would protect his lungs, and, because ears are made of bones that let us hear, he is also likely deaf. If we carried him to term, the birthing process would re-break every bone in his body, even with a gentle C-section, and he would then die of respiratory or heart failure. We wouldn’t even be able to hold him to comfort him when he cried.

We spent a good few minutes wailing inconsolably in the room, and will be every day, likely for the next few weeks, days and months. This was NOT what we wanted to hear. Not our baby. Not our sweet, little innocent perfect, beautiful baby, who we were so looking forward to raising, introducing to butterflies, music and reading. Who we were going to teach to walk, hear his first words, hear laughing and crying. Instead, we had an impossibly hard decision to make.

No words exist to truly express the deep and dark sorrow that we have been living with. One week ago, everything seemed to be fine. All of my blood and urine samples, and fetal heartrate were excellent. We were joyously waiting to meet our little one. Instead, we are preparing to say goodbye.

Thank you to everyone who has already shown us their love and support. We have kindly been asking to be left alone in our sorrow, and we very much thank you for respecting our wishes. This isn’t something we feel ready to discuss or explain.

At a later date, when we feel ready, we will hold a memorial service for our little Henry. We know that he will soon be with his Grandpa Richard and Grandma Arlene, and that we’ll all be together again someday.