Why don’t we talk about it?

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So I know it’s been a LONG time since I have posted, and though I feel there are many reasons for this…Busy life of a mom. Life being extremely normal, even boring at times, (I know!! How could life with Down Syndrome be normal?! 😉 Summer heat of Rome with no air conditioning means less time sitting at the computer. Wanting to spend every waking moment exploring Rome and finding hidden treasures with my adorable and quite entertaining babe. Months of endless visitors. I could go on and on. I think the main reason is that I didn’t feel like I could sit here and continue our family’s story, our journey, without telling the truth.

And the truth is something that for generations we women have NOT openly talked about. Something we have been told to keep private. Yet, something that happens to SO many of us.

The truth is that one week before Annie’s first birthday, I had a miscarriage. We were seven weeks and I know this is early and extremely common. I know this is exactly why doctors tell us to strongly consider keeping the news private until the magic 12 week safety mark (which we were planning to do, Mike and I and a very close friend here in Rome were the only ones who knew). I know that it could have been so much worse. That many women lose pregnancies at much later gestation, which I can’t even imagine. My mother lost her sixth pregnancy at 8 months and had to carry the baby in her belly for a full week before they could schedule an induction. I remember being ten and being so confused as to why my mother was crying and telling me that I wasn’t going to have a little brother or sister anymore when her belly was just as big as the day before.

I know that having a miscarriage without a baby at home and in your arms is a much harder pill to swallow. Though I feel extreme pain and loss, I have my Annie. I can’t imagine the women who have to go through this never knowing if they will ever get to hold a baby of their own. And the ones who have miscarriage after miscarriage, feeling so alone over and over and that they can’t talk about it; I cannot even begin to feel their pain.

I also know Annie is young and people might’ve thought we were crazy for having two babies so close in age. But the truth is, it is what we wanted, not only for us as parents, but for Annie. We know that a sibling close in age for Annie can do wonders for her development. We, both coming from extremely big and close families, believe that there is no greater gift to give your child than a sibling. Or in our world, a best friend for life. Though I know that we will most likely be able to make Annie a big sister in the hopefully near future, it doesn’t take away the pain we now feel. I also understand that you can’t always get what you want. And I feel that I understand deeply that the “unwanted” events in life can come with the most beauty and are often our greatest gifts.

And as a woman who believes that everything happens for a reason, that the hard things in life make us greater and teach us the most important lessons; that sharing one’s experiences can not only lighten the load, but can help others going through similar situations; I am choosing to share this experience. Though society might see it as the wrong thing to do or not politically correct or whatever. I am SICK of feeling alone. I am SICK of the other people in my life that are going through or have gone through miscarriages feeling alone, like something is “wrong” with them, with us. So I am sharing my story.

I lost the pregnancy four months ago. We would’ve been past the half-way mark and would’ve been getting ready for another bundle of joy to add to our tiny apartment in early November. But we’re not.

On Sunday March 24, two and a half weeks after we were definitely sure we were pregnant. After  two weeks of the first symptoms of constant overnight trips to the bathroom, insane magnified sense of smell, and pangs of nausea; I started bleeding. We were scheduled to see our OB the next day to see the heartbeat. Giorgia told us to relax, gave me strict orders to stay off my feet and that she would see us the next day at our scheduled time. She said that whatever was going to happen would happen, that we couldn’t stop it and to try to stay calm. I knew though. Just as I knew the second they placed Annie on my shoulder the moment she was born that she had Down Syndrome; I knew I was losing this baby. And it was SO much worse than getting a diagnosis of  Down Syndrome.

We went in in the afternoon the next day and my HCG levels indicated that I indeed had lost the pregnancy. Giorgia sat us down and told us not to cry. She rambled statistics and told us our grandmothers wouldn’t have even known they lost a pregnancy. That miscarriages are much more common than people think and that they occur in as many as 1 in 3 pregnancies. She told us I would probably bleed for 7-12 days and that we could and should try again next month. That I would most likely be pregnant again by May. I left the office feeling empty, sad and exhausted, yet much more at peace than when we walked in.

In the meantime, my husband was unavailable. He had serious deadlines for his dissertation proposal and it was important that he keep his work pace. He’s amazing, don’t get me wrong. It’s just that the miscarriage couldn’t have come at a busier time for him. We spent more time apart than together and felt a distance between us that we’d never experienced. Thank God for Annie. Her birthday was one week away, and though we were sad, we had SO much to celebrate. We threw a huge party and celebrated the amazing first year of our daughter. We focused on our MANY blessings and we tried to move on. I spent my days rocking and snuggling my beautiful babe. She got me through and we talked together of the day she would be a big sister  and all the adventures we would have as a growing family. I was fine, would be fine. I looked forward to the end of the bleeding, feeling like once it ended I could move on and focus on the future. But it didn’t stop.

A month later I was still bleeding. We went in to see Giorgia who demanded that we stop breastfeeding immediately. This was hard for me, because Annie doesn’t drink from bottles. We would try and try and she would go three days without drinking anything, and I would cave because I am her mom and it was scary seeing her not drink. Part of Annie’s having Down Syndrome is low muscle tone, which contributes to feeding issues. I am sure it was a combination of this and a stubborn baby who just wanted her mom.  We focused on the fact that we would have to stop eventually anyway. We tried every type of bottle, sippy cup, you name it, she only could drink from me. Fast forward another 2 or 3 weeks…still bleeding and finally stopped nursing. Annie doesn’t drink anything for 15, yes FIFTEEN, days. She stayed hydrated solely on pureed food. This was stressful to say the least. The bleeding continued.

We went back to the doctor and had our upteenth ultrasound which showed nothing and suggested that the continual bleeding was hormonal or from the stress. Fast forward another two weeks, still bleeding. Though I hadn’t nursed in 5 weeks my doctors believed it could still be hormonal. Yes, at this point multiple doctors were involved to crack the case. By this time I could’ve performed the fancy ultrasound myself. I am not angry with these doctors, as I watched them look and order higher definition ultrasounds on more than one occasion, I knew they were doing everything they could. There was nothing. And they wanted to avoid a D& C, even more, I wanted to avoid it.  I was put on the pill to regulate hormone levels and told the bleeding should stop. It didn’t.

All this bleeding got me thinking. And I have decided that when a woman has to go through the extremely terrible experience of a miscarriage, they should be thrown a huge party. A “New Underwear Shower.” That women who have to go through this should be showered in new, fun, sexy, feel good underwear to replace the underwear that will forever be stained and remind them of the baby they lost. That they should not have to replace these pieces alone, but their friends should pitch in by purchasing one pair to help us move on. The same friends that, had a miscarriage not have taken place, would be throwing us a baby shower. I mean, we need this kind of support at sad times too, right?  Just a thought.

But back to my story.

Because of all this bleeding I was finally, two weeks ago, scheduled for a scope. They would put me under anesthesia and use a camera to look more closely just to make sure they weren’t missing something. I went in on a Monday morning at 7:30 and was given an overnight room, though I would be leaving early that afternoon. I met my anesthesiologist who spoke English, mega plus. I was wheeled up to surgery and couldn’t help but think, “YES! Maybe this will mean this is finally over and we can move on.” That maybe it WAS nothing and once I heard that it was nothing my stress would diminish and the bleeding would stop. I tried to keep my mind off of the bleeding. As I laid in the surgery prep room awaiting my turn I just watched everyone coming and going and tried to eavesdrop on the Italian conversations around me. I couldn’t believe that a hospital existed that looked exactly like the ones on television. EVERYONE, every single employee at this clinic, is stunningly beautiful. And maybe it was the drugs, but I couldn’t stop telling every doctor and nurse that came in that this is the best looking group of medical professionals I had ever seen.

After a procedure that took about an hour, I woke up and Giorgia and another OB (he was also there when Annie was born) came to talk to me. They had indeed found something. They performed a D&C and removed it. They were running a biopsy and we would find out in a week or so. It could be something serious or there was a possibility that it was fetal material left from the pregnancy. They also had to remove something from my cervix, they sealed the wound. But more bleeding was expected. They told me to try to sleep and that I would go home in about an hour.

I will leave out the gory details, but the decision was made to keep me overnight because Giorgia could sense that Mike was nervous about the amount of bleeding he was seeing. Mike helped me to get as comfortable as possible, brought Annie in for a kiss and then headed home. At 9:30 p.m. I asked him if he could get a sitter and come back because I was really uncomfortable and couldn’t sleep because I kept bleeding through everything and it wasn’t easy trying to fall asleep laying in puddles. The nurses changed shifts right before Mike got there and they both couldn’t speak English, but I saw the concern in their eyes. Mike arrived around 11 and not ten minutes later in walked my two OBs. They had been called in from the comfort of their beds. They pulled the sheets back and realized they would have to move me in order to see what was causing the hemorrhaging. Luckily they got there in time. They wheeled me down to a pitch black and closed clinic so they could put me in stirrups. They spent 20 minutes soaking up blood so they could even see what was causing the bleeding. They then informed me that the wound at the top of my cervix had opened and that we didn’t have time to wait for anesthesia. That they would have to give me stitches right there while I was awake. I have never felt more pain than I did in that office. Mike and I held hands as the doctors “fixed” me. And we cried together for the first time since we lost the pregnancy. Once they were finished I fainted. It was the most traumatic and painful thing I have ever experienced in my life. A week later Giorgia called to tell me that it was indeed fetal matter and that we didn’t have anything to worry about as far as cancer or something serious.

For the first time in over three months, I finally feel like myself again. I no longer feel empty. I don’t feel like there is something wrong with me. I feel like it’s over, FINALLY. And we can move on. Though it was a terrible experience, and I wouldn’t wish it on anyone, and maybe some would argue that I should feel angry, that it should’ve been taken care of earlier so I didn’t have to go through this for so long. I am at peace with the sequence and dragging on of events. I will forever remember how in that moment holding Mike’s hand while I felt every stitch, how close I felt to him. That though I was the one enduring the physical side of things, we were going through this together. And I know it has made us stronger. The distance once present has disappeared.

I want women who have experienced this to know that they are not alone, that there is nothing wrong with them. That if keeping it to themselves helps them that is just fine; but that sharing my loss, the small act of sitting and writing this is helping me enormously. It is helping me to let go. It is helping to validate the emotions I have felt. At the very least, getting it of my chest and sharing it is making me feel better.

I don’t know why hard and sad things happen in our lives. I only know that we have a choice in our reactions to them. After going through what most would think are two “hard and challenging” things in under a year and a half. The birth of a daughter with Down Syndrome and the loss of a pregnancy with complications. I can assure you that the prior is a piece of cake.

Some people believe that having a child with Down Syndrome is a terrible thing to go through. That terminating a pregnancy of a baby with DS is the best decision. I have had people ask me why I didn’t have testing, and how could I have been so irresponsible? (This really happened)  That the quality of life decreases with the presence of an extra chromosome in the family.  I am not the one to judge their opinion or choices. It is not my place. But I would like them to be aware, to know that there are much more terrible things. And if they can look into my world, and the worlds of other families who have been blessed by Down Syndrome, they will realize that we won the lottery. That by chance, our lives are different. But that difference enriches our lives in a way we couldn’t have dreamed.  That with Down Syndrome, and the lessons, laughter, and inspiration these beautiful individuals bring, the world is a much better place.

Our experience of loss through miscarriage  is 100,000,000 times worse. I am glad it is over. And so blessed that I have my beautiful baby girl. We are ready to move on and to catch up on The Amazing Adventures of Anne Kathleen! There are many, many happy reads ahead.

7 responses »

  1. You were an amazing child, finding you are an amazing woman is no surprise. Thank you for allowing all of us a window into your pain and your healing. Your voice is for so many others..hopefully they, too, will consider opening up and allowing those that love them help shoulder their pain and healing as well..love you !!

  2. Oh sweetheart, that’s so terrible, and I am so incredibly sorry for your loss. I am sending you lots of love and prayers. I am so glad that you and Mike and Annie all have each other. ❤

  3. As usual you survived this with grace and an open heart. Thank you for trusting your friends and family and yourself enough to share this. Looking forward to the Annie and family stories to come. I love you Colleen!

  4. Colleen….I’m telling you again that you are such a gifted writer…I actually felt as if I was there with you thru this experience and that says alot. I am truly sorry for your loss and know you will experience more joy tripled in the future for what you’ve been thru. I have a friend who has a Down Syndrome son who wanted to rename it “Up Syndrome” due to how special their lives are with him…all our love…Lauri Hannan and family

  5. I am so glad you finally sat down and wrote again. It made me unbelievably happy to get an email from ourromababy and couldn’t wait to read your post. I love that you shared your truth story since it just shows everyone how open and honest you are about everything. I heard your voice with every word and cried again. (Sorry it happened!!) Love you! Missing you, Annie and Beaz!
    xoxo

  6. Colleen – I love you. Thank you for writing so eloquently about what is so difficult to put into words. I share your loss and knew without being told exactly why you needed hugs and lots of prayers. You are an inspiration. God Bless You, Be Well. Love, Melissa

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