Memorial Day Memories

So, the hardest part about waiting so long between posts is not knowing where to start. This week marks the 2nd anniversary of that life changing sonogram and diagnosis. This anniversary certainly stirs up all of those feelings of grief that really have never gone away, but were residing quietly in my memory and in my heart. I can so clearly remember the denial and shock that I felt those days leading up to Memorial Day weekend 2 years ago as the unbelievable medical facts and statistics were thrown at me. Looking back on that time, I can vividly remember my tears all the way home from the first sonogram, during which we didn't really learn anything, but I had a suspicion that things were not as they should have been. I remember avoiding the texts and calls from my family who were excitedly waiting to hear if we were team pink or team blue. I remember waiting for the phone to ring to hear some confirmation that things really were just fine, that our sonogram tech was just having an off day and overreacted. I remember the uncontrollable sobs that shook me to my core and scared my then less than 2 year old son when that call finally came. I remember him looking at me with such confusion and fear. I remember the drive to Annapolis less than 24 hours later. We got pulled over for speeding, and the officer made some joke about the beach being in the opposite direction implying that we were going the wrong way. My husband told him that we were headed to a doctor's appointment, and when the officer looked over to see my swollen belly with a tissue box in my lap, and a sea of wet tissues covering the floor of the car, he looked at us with pity and graciously let us go with a warning. How I wish we were headed to the beach that day to enjoy some fun in the sun without a care in the world. I remember preparing myself to hear that our baby girl had Down Syndrome, as if that would be the worst news ever. I remember meeting with the genetic specialist who had on a pretty necklace and was so calm and nice. I very clearly remember seeing the framed pictures of her two beautiful children on her desk, wondering what my two children would look like posed next to each other for a picture since my daughter might have Down Syndrome. I still didn't get it. My two children would never meet. I remember using the last tissue from her box to soak up my neverending tears. I felt like the walls of the room were closing in on me as I looked at charts of chromosomes that took me back to high school biology. I remember wondering if maybe this was all a mistake. Maybe they got me mixed up with someone else. When I was growing up, there was another child who shared my same first and last name and even the same middle initial. My mother told me that our medical information had gotten mixed up once as we both had the same pediatrician. I think one of us even got the wrong immunization one time as a result of the mix up. Maybe the same thing was happening here. Maybe there was another Wendy in the waiting room carrying a baby who seemed likely to have Trisomy 13 or 18 because my baby was supposed to have Down Syndrome, which at least was compatible with life. I was in such denial about the reality of our situation that I thought we would still be leaving the next day for a weekend family getaway full of laughs and happy memories. I think amid my shock, I even asked the genetic specialist if we could still go, like she was my mom and I needed permission. She was so sweet. She didn't look at me like I had lost my mind, which clearly, she could have. She gently reminded me of some of the reasons why that may not be a good idea as I was expected to have severe cramping and discomfort from the amnio and was instructed to not do a lot of walking. The other obvious reason to not go was that we were planning to go to Sesame Place, which naturally, would have been filled with beautiful happy children, babies, and possibly, pregnant women. That would have been like torturing myself. Needless to say, we postponed our trip. I spent the weekend flooding myself with information, reading websites and blogs, emailing other Trisomy moms, crying more than I have ever cried, and waiting.... It's kind of crazy how vivid these memories and feelings still are 2 years later. Last year we planted Lily's memorial garden over the Memorial Day weekend. It's neat to see how her garden has grown and evolved over the last year. Some things have grown so much that I want to move a couple of things around and divide some plants that have really taken off. I'll probably spend some time doing that this weekend in preparation for her "birthday party". Last year, we celebrated Lily by hosting a balloon release and having birthday cake outside by her garden on June 6, the one year anniversary. It was a very touching evening for us. This is something we plan on doing each year. All three of our children have been born within 1 month of each other, so we are planning to spend some time this weekend preparing to celebrate each of them on their birthdays. Lily's birthday kicks off the summer birthday celebrations- we will celebrate her for the second year on June 6, our youngest, Ainsley, for the first year on June 18, and their older brother, Owen, for the fourth year on July 3. Just like most mothers, as we celebrate, I will be reminded of each of their birth stories as well as the precious time spent with each of them in my womb leading up to the first time I laid my eyes on them and held them in my arms, on the days of their births.

Out of hibernation

I can't believe how much time has slipped away from me since I last posted. Let's see...I think I left off during a time of fasting, and I know I had all intentions of updating you all. I am ashamed to say that I failed to fulfill my promise of an update. As it turns out, our family situation that I was so vague about in one of my last posts has been completely changed, for the better. I firmly believe that once I completely let go of that situation and turned it over to the One who has the ability to change things, a transformation occurred. It never fails, yet I always have to remind myself to let go of the things I cannot control. On a more recent note, I think about this blog all the time. I think about the things I would love to write about, and the things that I don't really know how to write about. I also think about the things that I've been meaning to write about and pictures I want to post if only I had endless time to do so. I am working on figuring out a way to get back into this. I've been telling myself to write for some time now, and was encouraged to get back to it by my husband also. He must know how helpful it was to me in the past. So many events have transpired lately that I need to process and acknowledge. My next few posts may seem somewhat disjointed and fragmented, but I think that is fairly representative of my thought process right now, so bear with me.

Re-post from Small Bird Studios! Please read this!!

I borrowed this from another Mommy's blog that I follow. These words are so true. I can relate to so much of what is written here, as I'm sure that many other parents who have lost a baby can too. I just had to share this.

When you lose a baby...

You don’t know what to expect.

People surround you. For a couple of weeks. Making sure you are not going to kill yourself, refuse to get out of bed, or start rocking a baby doll like the crazy lady they heard about from a friend.

You get lots of sympathy cards, clearly written and designed to be sent to console a daughter losing her father. Not the other way around.

You get free baby formula in the mail. For months and months and months.

And free baby magazines. And free baby coupons.

You secretly envy every pregnant woman. But not without a tinge of guilt, because you know all too well that she might be one in four- expecting her rainbow child.

It seems like the whole world is expecting a baby.

You have baby stuff around your home. Because you never imagined you wouldn’t need it.
You feel jarred. In the grocery store. At a birthday party. At the dinner table. At Christmas. Driving.

The baby you never knew, but lost changes every part of your life. Every. single. part.
Forever.

You see baby clothes and it brings tears to your eyes.

You get sick and tired of crying. You never knew it was possible to cry this much.

You find yourself angry at God. Angry at yourself. Just angry.

You swear you can feel them kick but they’re gone. They call them phantom kicks. I call them painful, all kinds of painful. But sweet too.

You know, or you have a strong feeling of knowing what your child would have looked like, and been like. You see a child in the store, or on the street. Their hair color, dimples, smile, their personality and suddenly you are reminded of your child. You miss your child even more, if that’s even possible.

Your Babies R’ Us Registry is still active. There is no delete button on their site. The babies r’ us people don’t make a dime on people like us. Why bother right? You have to call them, plead with them to remove your freaking’ registry, because there will be no baby shower. There is an awkward silence. There is sadness. There will be no baby.

You get hospital bills about 3-4 months after you buried your child. You have to pay for the baby you delivered but didn’t bring home.

You find that moment of happiness in life for the first time, but the guilt swallows it up almost immediately.

You remember the size of the casket. The size of the plot. The face of the funeral director. The expression of those that attended the funeral. The feeling of raw pain, like your chest has literally been ripped open.

Somehow you convince yourself that you deserve happiness. Because you really do. But in the happiest, purest moment, there is still that hole that only they were meant to fill.

People compare your pain to their own pain. The loss of their grandmother, husband, their failed marriage, rebellious teenagers. Somehow this comparing leaves you stranded. If they can compare their pain of a situation to the loss of your BABY, they will likely never get it. Babies are not supposed to die. End of story.

You lost a dream. And it almost feels like you imagined their entire existence up. Their name becomes a distant memory on the lips of others.

There is awkwardness when you talk about your child in a crowd. No one knows whether to cry, walk away or pretend you never brought him or her up.

You lose friends. You find new ones.

You can’t believe that women have actually survived this and you never knew about it. Not really, anyway.

You would do anything for another minute with your child.

You cry when others bring up your child, not so much because it hurts but more so because it such a precious and rare gift.

You long for the rewind button, even after many many instances of acceptance.

You want to know what went wrong, and why…

You find a new appreciation for moments in life that make you laugh… you laugh harder and love stronger.

You know that you can die bitter, or die thankful. There is no in between.

You never ever, EVER get over your child. The one you hoped for, prayed for, carried and loved for the weeks and months they were with you.

You learn to live with the pain.

You are better for having known them at all.

21 Day Fast Update

Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is- his good, pleasing and perfect will. Romans 12:2

It's been nearly two weeks since I made the decision to be more aware of my thought patterns and to spend more time with God whenever I have the instinct to think something that coud have a negative impact on my feelings or my family and their feelings. In my last blog post, I referenced a situation that my family is facing right now that could be perceived as a negative life event, but I have chosen to think of it in a different way during this fasting period, and hopefully even after that.

Let's just say I've been spending much more time praying than I was in the past, and I can verify that there really is so much power in prayer! Typically, my prayer time occurs in the car as it is one of the few places that I spend time completely alone. Sometimes I pray in the shower or just before going to sleep at night, but I'd really like to dedicate time each day that is specifically for God. If I'm praying while I'm driving or bathing, I am sharing my time with God with other tasks. Like many other women, I multi-task everyday to accomplish all that needs to get done, but God deserves much more than half of my attention and focus, doesn't He? Over the last 11 days, I have prayed at times and in places when I might not normally, and it has been rejuvenating for me.

While I think I'm on the right track, I haven't reached my final destination just yet. I am a work in progress and I'm trying to stay focused on fulfilling God's purpose and His will for me. This fast couldn't have come at a better time. I'm looking forward to the final 10 days of this fast, and all of the time that I will spend strengthening my relationships with God, my husband and my children.

New Year, New Me?

It seems like it's been a while since I've really written out what's on my mind. The month of December was so hectic, as I know it is for countless others. It really has been a bittersweet time for us. We've received some awesome news this month as well as some awful news. We had a week just before Christmas that was such a roller coaster of emotions.

We attended the STAR program's memorial service for a second year. It was so nice to dedicate that time to remembering our angel. I met a fellow STAR parent who has chosen to make a quilt for all of the STAR babies. I was excited to be able to share the five quilt squares that were designed by my family members in memory of Lily for her to add to the quilt. I will post some pictures of our squares soon. They are amazing!

Prior to this service, we had been going through the motions of the typical Christmas preparation and activities. We were decorating the house, shopping, wrapping, seeing Santa, checking out the Christmas lights, going to Christmas parades, getting involved with the Christmas drama at our church, and planning a little Christmas party at our house. We were excited to experience our first Christmas with Ainsley, who is now 6 months old. Our son, Owen, who is 3, was so much fun this year. He embraced the holidays wholeheartedly, and it was such a joy to watch. It was a little difficult to balance my feelings this year as I was so happy to see my two little ones experience the magic of the season, all the while wishing that Lily could be part of the fun too. This would have been her second Christmas. However, the memorial service was a great way to block off a special period of time to celebrate and remember her. I look forward to the year that we choose to take Owen and Ainsley to this service to remember her as a family.

The morning after the memorial service, as I was still a little emotionally drained from the night before, we received some bad news that has negatively impacted our family. We are still digesting this news and learning how to cope with it. Obviously, it is never a good time to receive bad news, but two weeks before Christmas really put a damper on my holiday spirit this year.

Later that same week, we took our 6 month old, Ainsley, to the cardiologist for a follow up appointment to check on the status of the hole in her heart. We are beyond excited to report that the hole is closing!!! While it is still slightly visible, it is significantly smaller, and is now the size of a pin hole. We were told that surgery is definitely not indicated given this progress!! I couldn't have asked for better news at a better time. Just weeks before Christmas, I finally felt at peace about this issue that has been seemingly unresolved for the last 6 months.

Upon learning about her condition in June, I naturally worried about my daughter's health, and the effects that her condition could have on her teeny little body. I recognized after her last appointment that I could not control this issue and that in order for me to be the best mommy I could be for her, I needed to turn it completely over to God. After all, He is the ultimate healer, not me. I wish that this had been my initial reaction, rather going through four months of worry, stress, and anxiety because as soon as I made this very conscious decision, a peace came over me, much like the peace that I feel when I think about Lily and the fact that I know she is okay.

Given all that is going on in our lives right now, I felt like this was one issue that I could safely check off of our list of things to worry about. So, that takes me back to our newest source of stress....I've been talking a lot to my sister, Tracy, about this issue and the wide range of feelings that I am experiencing. After much venting on my part, and attempts to boost me up on her part, she finally suggested that I pray about it. Such simple advice really. Any of you who read this blog recognize that I am a Christian and that my faith is very important to me, so why didn't I think of this?! I know how much I have relied on God throughout my journey with Lily, and I realize that He is the One who has been my constant source of support and encouragement. It is only because of Him that I was not a complete wreck every single day for the months immediately following Lily's death. He allowed me to think more positively and to be hopeful during those times when I could have felt hopeless. I realized recently how much He has helped me to get through the waiting time that was so necessary for Ainsley's little heart to heal itself. It is abundantly clear to me that He is always faithful. So, while Tracy's advice may seem quite simple, as soon as she suggested that, I was speechless. Of course, prayer is the answer! Why do I feel the need to solve this issue, or to analyze a situation that I don't have any control over? For me, it's not even so much about the bad news that we received as it is about the way that I am thinking about it and responding to it. Then I realized, why am I wasting my time with negative thoughts or negative energy? I am here to fulfill God's purpose, and the way that I was responding to my situtation was certainly not something that I think He would be proud of.

I posted some of my thoughts about New Year's resolutions last year, and the fact that you don't need to wait until a new year to make a change. Every day is a new opportunity to make changes and improvements. It just so happens, though, that the new year coincided with my immediate need for change and a new perspective. So, I am, in a sense, taking back the words that I posted just one year ago, and making a New Year's Resolution. It's a big one.

My church just started a 21 day fast yesterday, and after much thought and prayer, I have decided to fast negative thinking. I haven't shared this with anyone, and now that I've put it out there, I know I must hold myself accountable. I wouldn't necessariy describe myself as a negative person overall, but I have tendencies to focus on the potential problems given a less than ideal circumstance, and it just so happens that we have had a few of those over the last couple of years. Given our current situation (which I realize I've been extremely vague about), it will be a challenge for me to remain optimistic, but I believe that God doesn't want for me to focus on the obstacles or the challenges. If I rely on Him, all of my needs will be met. I am reminded of a restaurant manager that I worked for when I was in college waitressing at a crab house in Ocean City. Anytime someone went to him with a problem, he would respond "there are no problems, only opportunities". Fifteen years later, I am still reminding myself of this. I am making a decision to focus exclusively on the potential opportunities. I will be praying diligently for patience and the ability to control my thoughts. This is a skill that I teach others to do everyday, so it's time I practice what I preach, so to speak. Stay tuned for updates on my progress. I have a feeling this could be incredibly eye opening and life changing for me.

Merry Christmas!

Merry Christmas my sweet baby girl!! This was the second year that you celebrated Christmas with Jesus. I missed you tremendously and wished that you could have been here with me and Daddy and your brother and sister. The joy on their faces was magical as they both took in the wonder of Christmas day. I can only imagine the experience that you have every day to celebrate not only Jesus' birth, but also His everlasting life. What a gift!
Speaking of gifts, we have added four new ornaments to our tree just for you! You are such a huge part of my heart, and it just isn't Christmas to me without thinking of you. I love having these reminders of you on our Christmas tree. I often gaze at our tree and admire all of our oraments as each one seems to have some significace or special meaning, especially yours. A couple of donations were made for you this Christmas to the Trisomy Foundation, which brings me such joy! While you are on my mind and in my heart every day, you have other family and friends who love you too.
I'm thinking of you always, and remembering you a lot today. I love you Lily!

Thanksgiving

This week marked the transition from Thanksgiving to Christmas, and I was surprisingly hit with feelings of grief while we celebrated such happy occassions. Of course, I continue to think about Lily consistently, probably still on a daily basis to some degree, but this past week, she was ever-present in my thoughts, and it finally all hit me Wednesday night, the night before Thanksgiving.

We started pulling out our Christmas decorations, and we were optimistically trying to have our Christmas tree up and decorated by the time we left for Thanksgiving dinner Thursday afternoon. We were ahead of schedule, as the process of putting up the tree and untangling the lights went much smoother than in years past. I always enjoy putting the ornaments on the tree as I have so many that are special to me. Not only is Christmas a time when feelings of grief may be stirred up naturally, but since Lily died in June, December is a 6 month mark, which feels noteworthy to me. This will be our 2nd Christmas without her, and it will mark the one and a half year mark since we last saw her. We have accumulated a handful of Christmas ornaments dedicated to Lily, and I cherish each one of them.

Our hospital's STAR program has given us two glass star ornaments. We received one of them before we left the hospital following Lily's delivery in June, and the other one was given to us at the Christmas memorial service last year. A friend of ours made an ornament for Lily last year that we were able to use in our family Christams pictures last year to remember her. I smiled immediately when I saw that one, and my heart was full of gratitude and appreciation for the thought that went into that. My mom gave us an "Always Remembered" Hallmark ornament last year. My family loves Hallmark ornaments, and each member of the family receives a special ornament from my mom every year. I love that Lily could be included in that tradition. Finally, the funeral home that we used for Lily's cremation offered ornaments to the families who had lost a loved one within that year. It is a dove with a banner that reads "Lily Grace".

I strategically placed the Hallmark ornament and the two star ornaments near the top of the tree to reduce the risk of my son taking them off or breaking them. Since the handmade ornament is not breakable, it was given prime real estate, in the front and center of our tree. When I got to the dove from the funeral home, I hesitated. As I placed it closer to the top on the side of the tree, I couldn't help but think that never in a million years did I think that I would be putting an ornament from a funeral home on my Christmas tree. Ugh- did I really want to include this on our tree? I took it back off, and considered it again. Do I really want this reminder? Of a funeral home? At the risk of sounding snooty, it looks kind of cheap and like something you might imagine would come from a funeral home. Although I never would have imagined ornaments coming from funeral homes in the first place, but you get my point. It's a little weird. I decided that I did want to include it after all, and while it may seem strange to have this on our tree, it is what it is. This has been our journey, and this is our life. Funeral home and all.

While the tree decorating was in full swing Wednesday night, I kept checking my computer for news from friends of ours who are expecting their first baby, and we couldn't be happier for them!! She has been eagerly waiting for her sonogram appointment to learn the gender of their new bundle of joy, and I was anxious to hear their news. I have been really excited for her, and I don't know if I realized it, but I guess I had been a little anxious, and maybe even worried for them.

I remember being so excited to find out if Lily was the little girl that we were praying for, but I never really wondered if she would be healthy. I just assumed she was. I feared for this couple who so obviously want this child. I hate that fear comes to my mind at times like this. I wish I could just be excited and positive, but it was this same 18 week sonogram appointment for us that forever changed our world, and anytime I know of someone going to a similar appointment, I try my best to act like I'm excited about their baby's gender, but really, I'm more excited to hear that their baby is healthy. I often wonder how another couple would deal with a tragedy if they were faced with the same situation we were. I know first-hand how devastating it is to go through, and I certainly don't wish that on anyone, especially people we know and care about. It's just something I often consider. I had been praying for my friend from the time I found out about her pregnancy. I realized just how anxious I was for her when I caught myself checking my computer for about the third time. What is my problem??! Between staring at Lily's ornaments and rearranging them on my tree, and checking my friend's facebook status, I was driving myself crazy. After moving the cheap looking funeral home dove for the third time, there was finally a new post... They were expecting a "HEALTHY baby GIRL"!!!

I couldn't be happier for them!! But, then, why do I feel like I'm about to cry...My husband noticed my emotion, and for the first time in a long time, we talked about Lily with each other. It was the way she capitalized those two words in her status update that hit me the hardest.

It was good to talk about her out loud. I think about her a lot, and continue to write about her (although not everything I write makes it to the blog), but we don't often talk about her. The holidays are always a special time for our family, and may always bring up these feelings as I wish that she were here to celebrate with us.

Overall, it turned out to be a very productive evening. The tree got done. We shared our friend's joy, via facebook. Most importantly, we remembered our daughter. What a great way to celebrate the night before Thanksgiving!