Our daughter, Lily Grace, was born to heaven on June 6, 2010. She was diagnosed with alobar holoprosencephaly (HPE) and a rare arrangment of trisomy 18 (isochrome 18q). To learn more about our experience, you may want to start at the beginning. Read Lily's Story: from Beginning to End, which is one of the first blog entries on June 24, 2010.

He heals the brokenhearted and binds up their wounds. Psalm 147:3

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 2 Corinthians 4:16-18

He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. Psalm 46:1

Sunday, August 19, 2012

Ainsley's Surgery

What a mix of emotions the last couple of months have been! We have been mentally preparing ourselves for Ainsley's upcoming open heart surgery while at the same time trying really hard not to think about it. We tried to squeeze in as many summertime activities as possible as if we would never have another opportunity to do them all again. We stayed so busy that I was doing a fairly good job of not focusing on the what was to come...until we met with Ainley's surgeon. We requested this meeting to have the opportunity to ask some of the questions that we had without having to wait unti her pre-op meeting the day before her surgery. It was a good meeting with a lot of information to absorb. After a lengthy explanation about the procedure itself and all of the reasons why it is needed at this time, the Dr. went on to explain some of the associated risks. The surgery itself is generally very successful. In fact, there is 99% success rate. The surgeon had drawn a visual aid of the heart chambers and focused on the area of her heart that is in need of repair, and he used this same drawing to write out some of the potential risks such as a faulty electical system, which would require a permanent pacemaker, blood clotting or other blood related issues, brain damage and death....next to each one, he jotted down 1% or 2% indicating that there really is such a small chance that any of these could occur. He acted as if these statistics should make us feel more at ease about the surgery, but as I listened to him talk and I watched him scribble 1% next to each risk all over the picture meant to indicate my baby girl's heart, I kept thinking of Lily. There was only a 1% chance that we would have a baby diagnosed with Trisomy 18, and we were in that 1%. Just because 1% is a small number doesn't mean that it can't happen to us. Because of Lily, I can never live in complete ignorance to the possibilities. I know that I am not immune. We shared our experience with the surgeon that day. We knew that Lily's circumstance has nothing to do with Ainsley's condition, but he listened intently, looked into our eyes, then back down at the paper, and he noticed how many times he wrote 1% next to a devastating potential risk of a surgery that we chose him to perform on our baby, and he got it. That felt good. I know that the doctor doesn't have complete control over the potential risks of her surgery, but at least he knows who we are and where we've been. He empathized with us that day, and hopefully, on surgery day, he will acknowledge that our fears and worries may be a little more heightened than someone else's, but I don't think that any parent would feel overjoyed to face an open heart surgery on their baby, and I'm sure he is used to dealing with parents who are scared. I will continue to post updates on Ainsley's surgery and recovery on her caring bridge for anyone interested in following our journey.

Monday, July 2, 2012

Caring Bridge

As promised here is the link to Ainsley's caring bridge page. http://www.caringbridge.org/visit/ainsleyholder

Sunday, July 1, 2012

Update on Ainsley

I have one of my favorite bible verses posted at the top of this blog, and I think of it often when I think about our experience with Lily: He heals the broken hearted and binds up their wounds. I always thought about how this verse spoke directly to me, and I found comfort in those words because God has healed and continues to heal my hurting heart. Until the last couple of weeks, though, I never thought about these words as literally as I do now. I've written about our youngest daughter, Ainsley's, heart condition, and I last gave an update 6 months ago in December. We were so relieved after her last appointment with her cardiologist when the hole in her heart was closing and was posing no imminent risk to our baby girl. We rested comfortably knowing that surgery was not in our baby girl's future. I recently took Ainsley back to her cardiologist for a 6 month follow up assuming that the good news would continue and that I would be able to say goodbye to her cardiologist forever, but her appointment did not go that way. I heard the words "unfortunately" (which is never a good thing coming from a doctor), "leak", "further testing", and "open heart surgery". I left that office with my baby girl in my arms feeling defeated. As I was walking out of the office, I let myself go to a place in my mind that I wish I didn't...I felt a pang of deja-vu. Two years ago, I received the lowest blow, the worst news ever in a doctor's office located just a block away on the same street where I was at this moment. I can't drive by that office or even be in the town of Annapolis without thinking about that. That day, I walked down the hallway of the medical complex and thought "here we go again". What is it about this town and these appointments? Haven't I been through enough? Why am I being punished like this? Why is my baby being punished? Why does my innocent baby have to go through this? I don't know if I can handle this. How will I ever be able to get through this? How will I be strong enough to help my daughter get through this? These thoughts resonated in my mind for a couple of minutes before I managed to pull myself together. Through everything that I went through after Lily's death, I never once questioned God's will for me and my family. I never questioned His purpose, His plan, or His faithfulness. I never asked "why me?" because I knew that God's plan for me and my baby was perfect. I confess that the thoughts that I had as I left this appointment with Ainsley are thoughts that I never wish to have again. Just writing them makes me cringe because I know that in those moments I questioned God's will for me and for my daughter. For those couple of minutes, I challenged Him, and I felt bitter and angry. Although, I was able to slip back to a place of reason and faith, I got a little glimpse of the other side. I felt what it is like to lose faith, and it was not pretty, not even for a minute. As I drove home that day with my baby in the backseat completely unaware of her fate, I remembered the verse: He heals the broken hearted and binds up their wounds. And, just like that, I felt peace. She will be okay. I will be okay. Our family will get through this. It was not in our plan, or our desire, but it will serve a purpose, and I will try my best to glorify God as His purpose for me gets clearer and clearer. Our baby may have a broken heart, but thankfully, I know the One who can heal her, and I have faith that He will. If you are interested in reading more detail about Ainsley's heart condition or following our journey, I am in the process of creating a Caring Bridge page for her. I will post the link to her page once I publish it. In the meantime, we would greatly appreciate prayer for our baby girl and our family during this time.

Thursday, June 7, 2012

2 years

We celebrated Lily for the 2nd year yesterday. Naturally, I thought about her and lots of the what ifs throughout the day, but my overriding feeling was love and gratitude for my child. We invited the same intimate group of family over to send balloons to heaven and to enjoy "birthday cake". Last year, this was the best way we could explain to our 2 year old son what we were doing. We told him it was Lily's birthday party. I anticipated having to elaborate on this as the years went on, but it wasn't necessary this year as he vividly remembered the celebration from last year. He wanted to make sure that there would be cake, and that he could have a green balloon just like last year. He was emphatic that everyone else would have pink and he would have green. He stated that next year, he will send her a blue one, but this year, it must be green. He asked me if she would get a birthday card in heaven. I explained that just like last year, we could write her a message or draw her a picture on our balloons and those would be like cards for her. He was satisfied with that, and initially said that he would like his balloon to say "Happy Birthday", but when the time came, he chose to draw on it and leave it at that. Some may think that it is strange that we choose to celebrate her in this way each year because we never experienced life with her. We never laid our eyes on her while she was living. We don't choose to do this out of grief for our loss. We choose to do this to remember that she was alive. I could never discount the life that she had, regardless of how brief it was. She was a blessing from God. She was a part of me. There is a portion of the evening that has an awkward feel to it, though, as we all know why we are gathered together, but we don't really talk a lot about it. There isn't much to say. Our family's presence says it all to us. So, instead, we watch our children play. We watch the lives before us while we remember the one who is missing from it all. We independently focused on our own balloons and we watched the children among us embrace this new tradition without questioning it. For the 2nd year, I had my own moment of discomfort (although, I'm not really sure that is the best word to describe it) when I knew that everyone was done writing their message or drawing their pictures, and it was nearing the time to let our balloons go, and I just wasn't ready to let go. I enjoyed watching the kids run around with their balloons in their hand, tied to their wrists, or attached to the steering wheel of the motorized vehicle they were riding in, and I wanted to imprint those images in my memory because during those moments, Lily's memory was present. The evening was for her and about her, and while each person held on to the string of their balloons, we all thought about her. I wanted to make it last. When it was time to let our balloons soar, we gathered together and with few words spoken, we released the 1 green and 12 pink balloons and watched them inch their way to the clouds. With my camera ready, I snapped pictures of our balloons in the sky because it really is a beautiful sight and that is the image that I want to have to remember Lily's 2nd birthday celebration. This year has brought some changes. Owen referred to his baby sister as "Illy" last year, but sometime over the last 12 months, he has improved his ability to pronounce his L's, and he is now calling her "Lily". That was a little bit sad for me to be honest. I loved hearing him say "Illy". Another change this year is that Lily's baby sister, Ainsley, was born so she enjoyed the festivities for the first time. Lily's cousin, Quinn, is always fun for me to be around because he is an every-present reminder to me of Lily. Lily would be exactly the same age, and doing many of the same things. This time last year, Quinn wasn't yet walking. He had just started sitting up, and I remember propping him up in the wagon for a ride. This year, he was walking, running, and riding along with the big kids. What a difference a year makes! Tonight, as I reflected on the events of last night, I saw a beautiful rainbow in the sky. I have talked before about the significance of rainbows as they relate to our youngest child, Ainsley. She is my "rainbow baby", my peace and hope after the devastation and the storm. I felt grateful for this obvious reminder of God's faithfulness, and it couldn't have come at a more fitting time. God's timing is perfect; He's been with me every step of the way, and has never left my side.

Thursday, May 24, 2012

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.

Thursday, April 26, 2012

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.

Thursday, April 5, 2012

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.

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.