The first thing I want to tell you is that I do plan to continue what I wanted to do on my blog this month into November. I have so many posts that I need to write about, more giveaways to do, etc. If there's one thing I've learned on this journey throughout the last year it's to allow myself to do what I need to do when I need to do it. If that means staying up late to write a blog post in order to express something that's on my heart, then I do it. If that means forgiving myself and allowing myself an "extension" so-to-speak for "Jacob's month" (October), well, then I am doing that now. There is so much in a journey like this that you simply cannot plan for. You never know when the grief may hit you harder...you never know when the struggle to conceive again may overwhelm you...you just never know.
Tonight though, I simply could not go to bed without writing. One year ago today was a pivotal day in my life. It was the day that this blog was born. As grateful as I am for the chance to write and to reach others, I'd give it all up if I could simply change one key thing from October 21, 2010. I would change the diagnosis of my sweet little baby to one of "everything is fine" rather than the two words every parent dreads hearing..."I'm sorry."
Where was I last year at this time? I remember being so excited to be nearing the end of my first trimester. I hate to complain but I'm human and I remember being cranky from time to time during those early months of my pregnancy (maybe I was cranky a lot, who knows!). If you've been keeping up with my blog since last year, you might remember me saying that everything stunk. Seriously! It did! I was so sensitive to smells. I could smell things that the average person couldn't. And, of course, every smell made me nauseous.
Last year at this time too I had just recently announced my pregnancy on Facebook and to family and friends. The congratulations were so joyous and I truly felt like everyone was sharing in our good news. I had even been lucky enough to have made it back to my school for Homecoming and to participate in a ceremony to dedicate my sorority's new house. I was so goofy back then. I knew I was showing a bit--guess I'll blame some of that on my previous two c-sections!--and wanted to find a cute top to wear when I saw my sisters--most that I hadn't seen in almost 20 years! I didn't want to look like I was wearing a tent, but wanted to wear something to show where I was still skinny and well, where I wasn't so skinny.
I picked out a new blue shirt and remember having a wonderful time that beautiful fall day and just 5 days prior to Oct. 21. Here is a photo from that very fun Saturday...a picture of me (wearing my blue shirt, little belly sticking out) with some of my dear sorority sisters. Those of us in the photo were some of our chapter's charter members who were able to attend. When did we colonize at Kent? Sometimes 1990 seems like just yesterday!
We were all so happy to see each other. I loved renewing old friendships and catching up. The day was so much fun--we all watched the Homecoming Parade, I showed Alex where I used to live, we had a great time touring our chapter's new home (seen behind us in picture above) and then we took the boys to tour the part of KSU where the May 4, 1970 shooting had occurred. I had never seen all of the tour spots as they were new to the school. It was such a beautiful fall day to spend on campus with the leaves turning gold and the black squirrels darting about.
And then. Everything beautiful about fall turned ugly just a few days later on Thursday, October 21. Here's just a sample from my very first blog post which I started that evening after my appointment at 12.5 weeks for an in-depth ultrasound:
With a sigh, he (the doctor) looked at me and started by saying, "We have some serious issues here. There are some severe problems." He went on to list things like: thickness behind the baby's neck, extra digits, a protrusion in the abdominal wall and a cleft lip. Never in my life could I have imagined hearing such things. He said that while we didn't know for 100% sure, chances were highly likely that my baby had Trisomy 13 or 18, but he was pretty sure it was Trisomy 13.
Suddenly the the genetic counselor's information and diagrams came flashing back in my head. I was thinking, "Wait a minute, isn't Trisomy 13 the most rare of the chromosomal abnormalities that a baby can have?" People sometimes say that time stops when they receive horrible news. I wish I could say that time did stop. I'd give anything if it just would have stopped. It didn't. It just kept ticking on with each second, each minute getting more and more unbelievable and awful with what the doctor told me.
The doctor put his hand on my arm and said, "I'm very sorry." Again, more red flags went off in my head. It was almost like I had to pump him for the 'bottom line.' It was then that he told me that my baby had an 80% chance of not making it to term. It was difficult for me to form words at this point, but I asked, "So, are you saying I'm just waiting for my baby to die? That it's just a matter of when and how?" He said, "Yes."
I don't think any woman ever wants to use the words, 'baby' and 'die' in the same sentence. It should be illegal. It was almost surreal as I used the words. The doctor said I would more than likely miscarry. Again, more shock. Don't the statistics say that once you see the baby's heartbeat, once you reach the end of the first trimester, you have something like a 95% chance that everything is good and that you won't miscarry? What good are statistics like that? Again, I asked, "So, I'm waiting for my baby to die? Is that what you're saying?"
My mind raced ahead through the next 6 mos. Trick-or-Treating is next weekend. My mom's birthday is this weekend. Thanksgiving. My husband out of town for various November weekends. Christmas. Do I just continue to live my life waiting for this awful thing to happen to me? It could happen at any time. How? How do I do that? How do you continue to get bigger, wear maternity clothes and at a time when you should be getting things ready for the baby, instead prepare yourself for your baby's death?? How? How do I do that?
If you'd like to read more about the start of my journey, please feel free to read the rest of the post from October 21, 2010 by clicking on that link in the sidebar.
How fast things change. Here I had just announced my pregnancy right before my trip home to school, I had just seen my sorority sisters who were full of congratulating hugs and I came back to what I thought would be a fresh start into my second trimester only instead to be forced into a journey that I never asked to take.
Who does ask to go on this journey? Not many people would, I don't think. While I didn't choose this journey for myself and my family, I would not change a thing that's happened in the last year. Well, obviously if I could have had Jacob live, that's an easy one--of course I would have done that. But, aside from that, I do not have any regrets. For whatever reasons, God chose me for this journey and I am taking it one day at a time. In the early days of losing Jacob or on some bad days, I take it one minute of a time. That's all I can do and so far it's worked. I have no idea what the "end" of this journey will look like or even if there is one.
I think one thing that's helped me make it through the past year since receiving Jacob's fatal diagnosis and then losing him has been to not fight this journey. As much as I would have loved to have denied what was happening, to hide from it or to lash out at it constantly, what good would it do me?
I think back to Oct. 21, 2010 when I was so blunt in telling Sammy that his baby brother was going to die. In his caring way, he had told me, "The baby will be okay, Mommy. Don't cry." I wouldn't have it. I told him, "No, honey. The baby is very sick and is going to die." Sometimes I cringe when I think about my response. How could I have been so insensitive to my sweetheart Sammy? But then other times when I think about it I know I did it because I had to. I had to face this journey head on if I was going to make it through. Even my mom was in utter shock when I called her with the news in the car. Again, she tried to provide the ever supportive, "Well, I'm sure he'll be okay." I remember yelling and crying, "No! No, he won't, Mom! He is going to die!" I needed everyone around me to know the truth. I needed them to share the truth with me. Only in sharing in the truth about sweet Jacob would I or would any of us make it through...and make it through together.
From that day on, everyone was concerned and supportive. Well, most everyone. We'll leave that lie for now. Even my loving Sammy offered me hugs to catch my tears. I knew he loved his little brother too and together our family shared in the uncertainty that came with that dreaded doctor visit and Jacob's fatal diagnosis.
Of course I prayed for the opposite. I prayed constantly that God would show all of these doctors with their stupid statistics. That God would save my baby--that he would be a miracle baby and would live to be born and to be kissed in his mommy's arms. I dreamt about it too. How much I wanted to show them all that they were wrong! Jacob would live and be an example of God's wondrous saving power and love!
I knew in my heart though that God had a plan. I just didn't know my part in that plan. Would his plan include my son living for a bit longer? Much longer? To be born? To only live for a few months into his first year? I had no idea. It was like I was setting sail into an unknown sea where there was a tumultuous wave everywhere I looked. How would I make it through? I had no idea.
But I had to try. For the sake of my family--for Alex, for Sammy, for Benny...even for Jacob--I had to try to make it through that storm. I had to be strong.
I tried to start planning for all of the "hows" and "what ifs" that very day. Do we go out of town for my mom's birthday? How do we celebrate mom's birthday with my brother and sister-in-law who also just announced they were pregnant? What happens if the baby dies while Alex is out of town? What if the baby makes it past 20 weeks only to die shortly after? Will I have a c-section? Will I be able to have more children? What if he made it to be born only to die immediately after he took his first breath? What if he only makes it a few days or weeks? How would I cope? How? How? How?
All I can say is from October 21 on I started thinking about all of this. I didn't have answers but I was going to get them as soon as I could in order to regain some sort of control because when I left the doctor's office last year, I felt like I was caught up in a whirling tornado that was thrashing all over the place. I had so many questions. Scenarios in my head. Fears. Tears. Anger. Sadness. And what did I leave the doctor's office with? Pamphlets? Support groups? Anything to help me make sense out of what had just happened?
Nothing. For the most part, I left that awful place with nothing. I left only with three ultrasound pictures that I had to ask the technician for over and over--I still think that she wasn't going to do them because of Jacob's fatal condition. Did she really think that I didn't care to have them after hearing the news??? I also left with stupid printout that the genetic counselor ran to get for me when she saw me come out of the ultrasound room. I remember asking her if she had anything about Trisomy 13 so I could begin to educate myself on what was happening to my son. She said no but that she'd find something. Do you know what she gave me? A one-page sheet which was a technical summary of Trisomy 13. It's all she could find. You are a genetic counselor who grills people on their genetic family history and you don't even have packets of information assembled to hand to patients when they need the information? I couldn't even understand what she gave me. That's what I walked out of there with. More questions than answers and certainly no help from the doctor's office. So I was going to get the answers myself.
One question that I've yet to find an answer to is about the "odds" in pregnancy. What are the chances for a miscarriage/stillbirth/etc. The "1 in 4" at times seems to be conflicting with so many things that you read. To this day I find myself HATING statistics. I will never forget how after I had sat through an hour-long meeting with a genetic counselor answering every question under the sun that she told me, "Don't worry about all of this. You have a 98% chance everything is fine." This was just prior to my ultrasound. Ninety-eight percent. That's pretty good, huh?
Really??? How is it that I fell in the 2%? I guess someone has to, right? Unless I'm the "1 in 4?" And then of all things for my precious little one to have, it's one of the most rare chromosomal abnormalities? Well. Let's just say when someone now quotes statistics about how rare things are, I frequently react with sarcasm.
So. It's officially one year since I received the horrible news that my precious son wasn't going to make it. One whole year. One year of tears, of sadness, of anger, of confusion, of questions...and also one year of discovery, of learning, of reaching out, of helping others...and lastly, one year of love and of hope. I love my son. I love Jacob so much. I will never stop loving him nor will I stop talking about him. He was a gift from God and I treasure him daily. I never regret that we got pregnant. I carried my son for 13 weeks and I now treasure every one of those weeks.
October 21, 2010? A day of horrible sadness for sure. But also a day that I CHOOSE to remember something else. I CHOOSE to remember Jacob when he was alive and showing his mommy that he was very much ALIVE during the ultrasound. I CHOOSE to remember those moments with a smile on my face. Jacob was kicking. He was squirming. He was punching. He was opening and closing his mouth to practice for when he would breathe someday. I loved every minute of that part of my ultrasound! How I wish I had a video of it! That was the last time that I saw my sweet little baby alive. But it's not the last time that I will see him, for I will see him again. And I will kiss every squirmy inch of him when I do.
Much of this year has been about choices. I have learned that I must choose how I will react to things. Sure, some days I will cry because that's all I can do. Crying is the only choice sometimes...like on the day you find out that your baby probably will not survive. That's what I did last October 21. I cried. I panicked. I yelled. I moped. But other days when I can make that choice, I choose to be grateful for my baby, for the 13 weeks that we had with him and for the opportunity to see him so clearly that day.
October 21, 2010. Where were you on that day? I was at the very beginning of my journey and one that is common to so many, unfortunately. It's not just my journey. It is "A Mother's Journey"...full of loss, full of love and full of hope.
Thank you for sharing in this journey with me, my friends.
With love to my sweet little Jacob--Mommy remembers seeing you on October 21! I know you wanted me to see you. You wanted me to watch every movement you made--to laugh, to cry because I loved watching you so much. You were here, my sweet baby. Mommy loved seeing you and always will dream of the day when I can hold you in my arms.
*Special thanks to Small Bird Studio for the beautiful graphic about strength!