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!
Sunday, December 25, 2011
Monday, November 28, 2011
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!
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!
Friday, October 28, 2011
What if?? (and baby Quinn turns 1!)
This date, October 28, holds very special meaning to me as this date last year was Lily's due date. Without realizing the meaning of this date, I found myself thinking a lot about her this afternoon. Periodically, I'll catch myself playing the "what if" game. You know, what if she had been a full term baby?, what if she had been born alive?, what if we could have held her for even a few moments while she was still alive?, what if she had lived hours or even days?, what if she could have survived long enough to leave the hospital to experiene some of her life at home?....Then, I'll stop those thoughts by reminding myself of the very harsh statistics about Trisomy 18 and alobar holoprosencephaly.
We know that 50% of Trisomy 18 babies who make it full term are still born. Of these 50%, just over 90%die during their first year of life. If only this was Lily's only hurdle. We also know that most babies diagnosed with alobar holoprosencephaly are still born. It is this diagnosis that would have limited her significantly. With such a severe brain defect, she would not have had the ability to walk or talk. She may not have been able to eat, and could have easily required a feeding tube. While this should put an abrupt halt to my what if thinking, I still find myself wondering.
You may remember that Lily has a cousin, Quinn, who shared her exact same due date. He was born just a few days late, and is now approaching his first birthday. I think my family was concerned about how I would handle Quinn's birth after having to say goodbye to Lily. Admittedly, I was concerned about how I would handle his arrival too and truthfully, I wondered how difficult it would be to see him through his infancy. I worried that seeing him grow, develop, and learn new things would remind me of all of the experiences that our Lily would never have. However, I have noticed the exact opposite. He may never know how much I enjoy seeing him and watching him grow and change, and while that is mostly due to his uniqueness, I admit that it is also because he is a reminder to me of my baby girl. It is because he is going through the ages and stages exactly as she would have during the same months and seasons. I realize that it may not be fair for me to compare Quinn to Lily as he is obviously special on his own. It's just that if he wasn't here, Lily may be easier for others to forget about since she is no longer with us. Quinn is now learning to walk. He is getting to the point where I can't really compare my what ifs to him anymore because I know for sure that Lily would have never been able to walk. I'm not even sure if she would have been able to sit up.
While I succeeded in making it through the first year after Lily's death, I was also anticipating emotionally getting through Quinn's first birthday. As I was shopping for his birthday gift and looking at the toys that were the most age appropriate for him, I considered that if all of my what ifs came true, Lily probably still would not have been able to play with any of these toys as she would not have had the physical or cognitive ability.
I try to make an effort to change any negative thoughts into more positive ones, so instead of rambling on about all of the scenarios that are just not applicable or realistic, I'll end this post by wondering what if Lily knew how much I think about her and miss her. Now I think that is a what if that I can be positive about!
We know that 50% of Trisomy 18 babies who make it full term are still born. Of these 50%, just over 90%die during their first year of life. If only this was Lily's only hurdle. We also know that most babies diagnosed with alobar holoprosencephaly are still born. It is this diagnosis that would have limited her significantly. With such a severe brain defect, she would not have had the ability to walk or talk. She may not have been able to eat, and could have easily required a feeding tube. While this should put an abrupt halt to my what if thinking, I still find myself wondering.
You may remember that Lily has a cousin, Quinn, who shared her exact same due date. He was born just a few days late, and is now approaching his first birthday. I think my family was concerned about how I would handle Quinn's birth after having to say goodbye to Lily. Admittedly, I was concerned about how I would handle his arrival too and truthfully, I wondered how difficult it would be to see him through his infancy. I worried that seeing him grow, develop, and learn new things would remind me of all of the experiences that our Lily would never have. However, I have noticed the exact opposite. He may never know how much I enjoy seeing him and watching him grow and change, and while that is mostly due to his uniqueness, I admit that it is also because he is a reminder to me of my baby girl. It is because he is going through the ages and stages exactly as she would have during the same months and seasons. I realize that it may not be fair for me to compare Quinn to Lily as he is obviously special on his own. It's just that if he wasn't here, Lily may be easier for others to forget about since she is no longer with us. Quinn is now learning to walk. He is getting to the point where I can't really compare my what ifs to him anymore because I know for sure that Lily would have never been able to walk. I'm not even sure if she would have been able to sit up.
While I succeeded in making it through the first year after Lily's death, I was also anticipating emotionally getting through Quinn's first birthday. As I was shopping for his birthday gift and looking at the toys that were the most age appropriate for him, I considered that if all of my what ifs came true, Lily probably still would not have been able to play with any of these toys as she would not have had the physical or cognitive ability.
I try to make an effort to change any negative thoughts into more positive ones, so instead of rambling on about all of the scenarios that are just not applicable or realistic, I'll end this post by wondering what if Lily knew how much I think about her and miss her. Now I think that is a what if that I can be positive about!
Monday, September 12, 2011
Bless her heart
Ainsley had her follow up appointment with the pediatric cardiologist on Friday, and while we were hoping for news that the hole in her heart was smaller or even closed, we are trying to stay positive after learning that things have not changed at all. I suppose it is good news that the hole has not gotten larger or that there haven't been any further complications. Just when I catch myself feeling frustrated with all of the doctor's appointments or feeling sorry for our daughter having to endure the appointments, EKGs and the echocardiograms, I remind myself yet again that we are incredibly blessed to have her in our lives. I remind myself too that she, hopefully, will have no recollection of any of these appointments. She is just so little and so young to have this mountain to climb.
I mentioned a bible verse a couple of posts ago, and talked about my brother-in-law who used to sing "Never Let Go" in our church. My husband and I have been attending a different church for the last 2 years, and until recently, I don't remember ever singing this song there, but we have now for the last two Sundays. What an awesome reminder to me the week leading up to Ainsley's appointment that God never lets go of us, and another great reminder following he appointment that He is there through every high and every low, through the calm and through the storm. Even when the news we received was not what we wanted it to be, we know that she will be okay because God will never let go.
As I was taking my 3 year old to pre-k this morning, he started talking about heaven, completely out of the blue. Not even three minutes before he was asking if we could go for a bike ride and play baseball after he got home. Next thing I know I'm in the middle of a very interesting three year old train of thought:
Owen: "Mom, how will I get to heaven?"
Me: "When Jesus decides it is time for you to go to heaven, He will come get you"
Owen: "When?"
Me: "Jesus will decide when"
Owen: "Right now?"
Me: "No honey, not right now."
Owen: "What about Daddy?"
Me: "What do you mean what about Daddy?"
Owen: "Will he come too?"
Me: "When it is time for Daddy to go to heaven, he will go too"
Owen: "And you and Ainsley?"
Me: "Uh Huh"
Owen: "Is Mocha (our dog) in heaven?"
Me: "No honey, you just let her in before we left, remember? She's at home."
Owen: "Oh. What about that frog? Jesus came and got it and took it to heaven?"
Me: "Yes"
Owen: "If you and me and Daddy go to heaven, who will hold Ainsley?"
Before I could answer-
Owen: "And mom, I think Ainsley is too little"
Me: "Too little for what?"
Owen: "Too little to go with Jesus. So Daddy and I will go to heaven and you stay at home with Ainsely, k mom?"
He almost said that like he was excited about it or looking forward to that day, and I guess I am glad that he sees it as a positive thing. I realize that I could have used this conversation with him in so many other, possibly better ways. I could have talked more to him about Lily, his baby sister or our cat who passed away a couple of weeks ago, but I really wanted to let him take the lead on this one, and quite honestly, I didn't want to draw out the conversation any longer than necessary as we were just a few minutes away from his school and I hated to leave him on this topic. It was interesting for me to hear my son acknowledge in his own way, though, that Ainsley has her whole life ahead of her.
I am so excited to parent her through every stage and every mountain. We will continue to pray for the hole in her heart to close, but we know that God's plan and His timing are perfect. Ever since we said goodbye to Lily, I try very hard to open my mind and my heart to learn whatever it is that God wants me to. I ask Him regularly to show me His will and to give me the patience I need to see it. I know there is a reason that He has chosen to use our Ainsley's heart in this way. While we pray for healing, we will wait as patiently as possible for her next appointment in December, and my son, who has been singing "Never Let Go" with his Lightning McQueen guitar and microphone has been keeping my thoughts in check and my hopes high.
I mentioned a bible verse a couple of posts ago, and talked about my brother-in-law who used to sing "Never Let Go" in our church. My husband and I have been attending a different church for the last 2 years, and until recently, I don't remember ever singing this song there, but we have now for the last two Sundays. What an awesome reminder to me the week leading up to Ainsley's appointment that God never lets go of us, and another great reminder following he appointment that He is there through every high and every low, through the calm and through the storm. Even when the news we received was not what we wanted it to be, we know that she will be okay because God will never let go.
As I was taking my 3 year old to pre-k this morning, he started talking about heaven, completely out of the blue. Not even three minutes before he was asking if we could go for a bike ride and play baseball after he got home. Next thing I know I'm in the middle of a very interesting three year old train of thought:
Owen: "Mom, how will I get to heaven?"
Me: "When Jesus decides it is time for you to go to heaven, He will come get you"
Owen: "When?"
Me: "Jesus will decide when"
Owen: "Right now?"
Me: "No honey, not right now."
Owen: "What about Daddy?"
Me: "What do you mean what about Daddy?"
Owen: "Will he come too?"
Me: "When it is time for Daddy to go to heaven, he will go too"
Owen: "And you and Ainsley?"
Me: "Uh Huh"
Owen: "Is Mocha (our dog) in heaven?"
Me: "No honey, you just let her in before we left, remember? She's at home."
Owen: "Oh. What about that frog? Jesus came and got it and took it to heaven?"
Me: "Yes"
Owen: "If you and me and Daddy go to heaven, who will hold Ainsley?"
Before I could answer-
Owen: "And mom, I think Ainsley is too little"
Me: "Too little for what?"
Owen: "Too little to go with Jesus. So Daddy and I will go to heaven and you stay at home with Ainsely, k mom?"
He almost said that like he was excited about it or looking forward to that day, and I guess I am glad that he sees it as a positive thing. I realize that I could have used this conversation with him in so many other, possibly better ways. I could have talked more to him about Lily, his baby sister or our cat who passed away a couple of weeks ago, but I really wanted to let him take the lead on this one, and quite honestly, I didn't want to draw out the conversation any longer than necessary as we were just a few minutes away from his school and I hated to leave him on this topic. It was interesting for me to hear my son acknowledge in his own way, though, that Ainsley has her whole life ahead of her.
I am so excited to parent her through every stage and every mountain. We will continue to pray for the hole in her heart to close, but we know that God's plan and His timing are perfect. Ever since we said goodbye to Lily, I try very hard to open my mind and my heart to learn whatever it is that God wants me to. I ask Him regularly to show me His will and to give me the patience I need to see it. I know there is a reason that He has chosen to use our Ainsley's heart in this way. While we pray for healing, we will wait as patiently as possible for her next appointment in December, and my son, who has been singing "Never Let Go" with his Lightning McQueen guitar and microphone has been keeping my thoughts in check and my hopes high.
Tuesday, August 16, 2011
My Rainbow Baby
Although I haven't written a post for the last several weeks, Lily's blog has been heavy on my heart. If you've been following my blog, you know that our second daughter, Ainsley, officially joined our family eight weeks ago. I think I was still in the hospital following her delivery when my husband asked me if I was planning to continue this blog. As I have said numerous times, Ainsely does not replace Lily and her being here should not interfere with me writing, so of course I am going to keep the blog going!... but then there's the reality of my time being consumed with caring for her and our toddler, and sleeping whenever I can, which has prevented me from posting another entry. Not that I am complaining for one second about caring for my new bundle of joy. In fact, my husband often tells me that I shouldn't hold Ainsley so much because she will get spoiled. If holding her and kissing her will make her spoiled, so be it. I just can't get enough of her!! So, be assured that while I may not be able to write as often as I would like, I am not ending this blog anytime soon.
Rainbows have been on my mind a lot lately, and seemed like a fitting topic for a blog entry. A good friend of mine, Beth, introduced me to the concept of "rainbow babies". For those who don't know, a rainbow baby is a baby who comes into a family following the loss of a baby. I hope she doesn't mind, but I have copied her words from a message she sent me several months ago that perfectly describes this concept. ""Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope." (Thanks again Beth!)
Ainsley is our rainbow baby, and, obviously, since this concept was introduced to me, rainbows have had a whole new meaning.
Just a couple of weeks before Ainsley was born, I took our son, Owen, to the hospital to visit my aunt. While we were walking to her room, we noticed the most amazing double rainbow. It was beautiful. Despite the fact that the definition of a rainbow baby would have referred to Ainsley, seeing this rainbow made me think of Lily. In addition to the rainbows, just being in the hospital made me think of Lily. Being there also made me think of Ainsley's pending arrival and the fact that I would be a patient in labor and delivery for a third time in just a couple of weeks. As I was staring out the window at the two rainbows, I thought of both of my girls.
A couple weeks later, Ainsley was born. We rejoiced when she finally arrived. I couldn't wait to bring her home. The very day that we got home, I noticed that the lilies that we planted in Lily's garden had bloomed for the first time. These gorgeous pink lilies seemed like such an obvious sign to me that Lily was smiling down on us and welcoming Ainsley into our family. I believe that she knows that bringing our little girl home would finally give me a sense of peace and comfort.
As I mentioned in my last entry, Ainsley was diagnosed with ASD, a hole in her heart. Since that entry, she has had some difficulty breathing and has also been diagnosed with VSD, a second hole in her heart. She is being followed by a pediatric cardiologist to monitor it. Upon learning this news, we were devastated. We don't want our little girl to hurt or suffer for even a second. After we finally met with the specialist and had a third echo done, we were told that if these holes do not close on their own, surgery may be required. In Ainsley's case, this would mean open heart surgery to put a patch over the hole. Our family and friends began to pray for our little rainbow baby, and we felt ourselves in the midst of yet another storm.
The day after we met with the specialist, Ainsley's big brother was coloring and drawing with a new pack of markers. He asked if I would help him draw a rainbow. Now, he has no idea that rainbows are of any significance or that they carry any special meaning. While we drew, we talked about the double rainbow that we saw about two months ago, and I thought about all that has happened in the last two months. Drawing rainbows with my son that day reminded me to think only of the calm and the peace that comes after the storm, rather than focusing on the storm itself.
I began writing this entry last week, but didn't get a chance to finish it. Last night, we had dinner with my family, which included my niece, Caroline. You may remember her paper plate picture that I shared in a previous blog entry. Well, I just have to share her artwork once again. I just can't help myself. It is the perfect ending to this entry. Before dinner, Caroline handed me an envelope with Ainsley's name on it written in pink marker, and she simply said "this is for Ainsley". We didn't open it until we got home, but once I saw her drawing, I couldn't contain my smile, and I just had to share it.
Rainbows have been on my mind a lot lately, and seemed like a fitting topic for a blog entry. A good friend of mine, Beth, introduced me to the concept of "rainbow babies". For those who don't know, a rainbow baby is a baby who comes into a family following the loss of a baby. I hope she doesn't mind, but I have copied her words from a message she sent me several months ago that perfectly describes this concept. ""Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope." (Thanks again Beth!)
Ainsley is our rainbow baby, and, obviously, since this concept was introduced to me, rainbows have had a whole new meaning.
Just a couple of weeks before Ainsley was born, I took our son, Owen, to the hospital to visit my aunt. While we were walking to her room, we noticed the most amazing double rainbow. It was beautiful. Despite the fact that the definition of a rainbow baby would have referred to Ainsley, seeing this rainbow made me think of Lily. In addition to the rainbows, just being in the hospital made me think of Lily. Being there also made me think of Ainsley's pending arrival and the fact that I would be a patient in labor and delivery for a third time in just a couple of weeks. As I was staring out the window at the two rainbows, I thought of both of my girls.
A couple weeks later, Ainsley was born. We rejoiced when she finally arrived. I couldn't wait to bring her home. The very day that we got home, I noticed that the lilies that we planted in Lily's garden had bloomed for the first time. These gorgeous pink lilies seemed like such an obvious sign to me that Lily was smiling down on us and welcoming Ainsley into our family. I believe that she knows that bringing our little girl home would finally give me a sense of peace and comfort.
As I mentioned in my last entry, Ainsley was diagnosed with ASD, a hole in her heart. Since that entry, she has had some difficulty breathing and has also been diagnosed with VSD, a second hole in her heart. She is being followed by a pediatric cardiologist to monitor it. Upon learning this news, we were devastated. We don't want our little girl to hurt or suffer for even a second. After we finally met with the specialist and had a third echo done, we were told that if these holes do not close on their own, surgery may be required. In Ainsley's case, this would mean open heart surgery to put a patch over the hole. Our family and friends began to pray for our little rainbow baby, and we felt ourselves in the midst of yet another storm.
The day after we met with the specialist, Ainsley's big brother was coloring and drawing with a new pack of markers. He asked if I would help him draw a rainbow. Now, he has no idea that rainbows are of any significance or that they carry any special meaning. While we drew, we talked about the double rainbow that we saw about two months ago, and I thought about all that has happened in the last two months. Drawing rainbows with my son that day reminded me to think only of the calm and the peace that comes after the storm, rather than focusing on the storm itself.
I began writing this entry last week, but didn't get a chance to finish it. Last night, we had dinner with my family, which included my niece, Caroline. You may remember her paper plate picture that I shared in a previous blog entry. Well, I just have to share her artwork once again. I just can't help myself. It is the perfect ending to this entry. Before dinner, Caroline handed me an envelope with Ainsley's name on it written in pink marker, and she simply said "this is for Ainsley". We didn't open it until we got home, but once I saw her drawing, I couldn't contain my smile, and I just had to share it.
Wednesday, June 22, 2011
Blessed!!
I am truly blessed. That word actually seems like an understatement right now. I gave birth to a beautiful baby girl, Ainsley, just four days ago. Every mother who brings a child into this world has a story to tell of their own very personal and unique delivery experience. Most mothers I've come across love to talk about their childbirth experience. I have now had 3 deliveries, and each one has been quite different from the others. My pregnancy with Ainsley was great! I was relieved to have very regular appointments with specialists who kept a close eye on her as a result of our experience with our little Lily. All signs looked positive at each and every appointment. Despite the consistent good news, I couldn't completely cast my anxiety away. As my due date drew closer, I began to feel more and more nervous about the endless possiblities I may be confronted with during delivery.
Ainsley's birth was another reminder to me of how precious life is. Not that I needed another reminder of that, and certainly not in the delivery room, but God chose to use this experience to demonstrate His faithfulness and to remind me, yet again, that He is in control. Ainsley made her way into this world with a knot in her umbilical cord. When the Dr. was asked if it was a problem, she replied "No, but it could have been". I didn't completely realize at the time the potential danger this could have posed for our little girl. We were so relieved to see her, hold her, and hear her make her first noises. While I was surprised to hear that her birth weight was so much smaller than her brother's had been, I was proud to learn that her Apgar score was a 9.9/10. She was healthy, and by Dr. Sweeney's early description, "perfect"!!!
I had anticipated an emotional delivery as I prepared to bring my second daughter into the world. Instead I felt peace the moment she was placed on my chest. Remember the woman who had commented to me that Lily was coming back to me? Well, Ainsley reminded me of Lily right away. Among my most treasured posessions are pictures of Lily taken at the hospital. Most likely they will never be posted on this blog because they are far too personal, but you must believe me when I say that the similarities between Lily and Ainsley are undeniable.
After I came down from my delivery high, I began to think more about the knotted umbilical cord. I later asked the doctor for clarification on her comment that the knot could have posed a problem. She explained that this could have caused restricted oxygen flow, which could have resulted in a "demise" or death. Wow.
The reality of that statement hit me like a ton of bricks. When she left the room, I let out every bit of pent up emotion that I had been carrying around for the last nine months. I cried in my husband's arms as I thought about how I would have survived another loss. Of course he reminded me that our little miracle was healthy and not going anywhere, and I know he's right.
I don't think I took any bit of this pregnancy for granted, and I definitely didn't think about the delivery lightly, but this experience, in my opinion, was such an obvious reminder from God to never ever take this child's life for granted. He gave us this tremendous gift, and in that moment in the delivery room, He instructed me to cherish it forever.
Two days after Ainsley was born, as we prepared to leave the hospital, the pediatrician told us that he had detected a heart murmur the day before and that it seemed to be louder and more pronounced. He had ordered an echo to get a closer look at her heart. The echo found that Ainsley has ASD, atrial septal defect, which is a hole between the top two chambers of the heart. A pediatric cardiologist will see her in a couple of months to follow up on this, but it appears as if it isn't a situation to be overly concerned with at this point. Surprisingly, I took this news rather well. I have survived my own daughter's death and had just absorbed the fact that my second daughter could have died. I can handle this. My husband was the strong one when I had my meltdown the day before, but I needed to be there for him on this day. After receiving this news, he felt discouraged and he commented "we just can't seem to get a break". I can see where he's coming from, but as I'm typing this blog entry with just one hand, I am glancing down at our beautiful six pound ten ounce creation in my other arm and I know that we got way more than a break this time. We got a blessing in every sense of the word.
Ainsley's birth was another reminder to me of how precious life is. Not that I needed another reminder of that, and certainly not in the delivery room, but God chose to use this experience to demonstrate His faithfulness and to remind me, yet again, that He is in control. Ainsley made her way into this world with a knot in her umbilical cord. When the Dr. was asked if it was a problem, she replied "No, but it could have been". I didn't completely realize at the time the potential danger this could have posed for our little girl. We were so relieved to see her, hold her, and hear her make her first noises. While I was surprised to hear that her birth weight was so much smaller than her brother's had been, I was proud to learn that her Apgar score was a 9.9/10. She was healthy, and by Dr. Sweeney's early description, "perfect"!!!
I had anticipated an emotional delivery as I prepared to bring my second daughter into the world. Instead I felt peace the moment she was placed on my chest. Remember the woman who had commented to me that Lily was coming back to me? Well, Ainsley reminded me of Lily right away. Among my most treasured posessions are pictures of Lily taken at the hospital. Most likely they will never be posted on this blog because they are far too personal, but you must believe me when I say that the similarities between Lily and Ainsley are undeniable.
After I came down from my delivery high, I began to think more about the knotted umbilical cord. I later asked the doctor for clarification on her comment that the knot could have posed a problem. She explained that this could have caused restricted oxygen flow, which could have resulted in a "demise" or death. Wow.
The reality of that statement hit me like a ton of bricks. When she left the room, I let out every bit of pent up emotion that I had been carrying around for the last nine months. I cried in my husband's arms as I thought about how I would have survived another loss. Of course he reminded me that our little miracle was healthy and not going anywhere, and I know he's right.
I don't think I took any bit of this pregnancy for granted, and I definitely didn't think about the delivery lightly, but this experience, in my opinion, was such an obvious reminder from God to never ever take this child's life for granted. He gave us this tremendous gift, and in that moment in the delivery room, He instructed me to cherish it forever.
Two days after Ainsley was born, as we prepared to leave the hospital, the pediatrician told us that he had detected a heart murmur the day before and that it seemed to be louder and more pronounced. He had ordered an echo to get a closer look at her heart. The echo found that Ainsley has ASD, atrial septal defect, which is a hole between the top two chambers of the heart. A pediatric cardiologist will see her in a couple of months to follow up on this, but it appears as if it isn't a situation to be overly concerned with at this point. Surprisingly, I took this news rather well. I have survived my own daughter's death and had just absorbed the fact that my second daughter could have died. I can handle this. My husband was the strong one when I had my meltdown the day before, but I needed to be there for him on this day. After receiving this news, he felt discouraged and he commented "we just can't seem to get a break". I can see where he's coming from, but as I'm typing this blog entry with just one hand, I am glancing down at our beautiful six pound ten ounce creation in my other arm and I know that we got way more than a break this time. We got a blessing in every sense of the word.
Monday, June 6, 2011
Birthday Girl
My dearest Lily,
Happy 1st Birthday baby girl!! We had such a great time celebrating you and your life on your birthday! Mommy misses you terribly, but I tried really hard to stay focused on making today a celebration of you rather than a time to mourn your absence. We spent the evening with your grandparents, aunt, uncle, and cousins. They all came together just for you, to celebrate you. We each wrote you a message on a pink balloon to send to you in heaven. I hope you received each one of them. You know, your brother was adamant about sending you a green balloon from him since that is his favorite color. He had such fun drawing pictures and writing messages to you on his very special balloon. He knew that it would reach you in heaven, and he was intent on watching it soar until he couldn't see it anymore . It brought tears to my eyes to hear him acknowledge that it was on it's way to heaven to be with you. I am so proud of him for understanding where you are and knowing that you are with Jesus, who loves you and protects you. After all, this is what brings us peace everyday.
I look forward to every occassion that we can celebrate you Lily! Your life has meant so much to me, and I treasure every single memory that I have of my time with you. I've expressed so many times what you have done for me. Your short time here with me gave my entire life meaning. You brought me closer to the things that are most important in this world. You have taught me more than I could ever imagine that I would have taught you. You have been such an inspiration and source of strength for me.
I look forward to the day that I will see you again, but in the meantime, I remain grateful for your life and your influence on me. You know that Daddy, Owen and I are preparing to meet your baby sister really soon. I am really looking forward to seeing her and holding her because I believe that she will remind me of you. I imagine that the two of you would have had so much in common, and that you may even look a lot alike. I'm sure I will think of you often as I watch her grow and develop. She will be a very special reminder to me of you in so many ways. You have both brought such precious and significant meaning to each other's lives in my eyes. Although it is still sad for me to think that you had to join Jesus before she could come into our lives, the two of you will always be my very special little girls.
I pray that you felt the love of your family on your birthday as much as we all felt your presence with us. The same God who loves you and holds you close has been watching over us to offer us comfort and strength when we feel weak. He is our common bond, and it is through Him that I feel most connected to you. You consumed my mind and heart all day long, just as you have so many other days throughout this past year. You are always loved, and will never be forgotten.
Remember Psalm 23: 4 Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. Your Uncle Steve introduced this verse to me through music. He used to sing it in church, and it has always had special meaning to me. It is a song that I now think of you when I hear. Lily, God never lets go. He is always there, and I will be too. I love you to pieces.
Happy Birthday sweet baby girl!
Love always,
Mommy
Happy 1st Birthday baby girl!! We had such a great time celebrating you and your life on your birthday! Mommy misses you terribly, but I tried really hard to stay focused on making today a celebration of you rather than a time to mourn your absence. We spent the evening with your grandparents, aunt, uncle, and cousins. They all came together just for you, to celebrate you. We each wrote you a message on a pink balloon to send to you in heaven. I hope you received each one of them. You know, your brother was adamant about sending you a green balloon from him since that is his favorite color. He had such fun drawing pictures and writing messages to you on his very special balloon. He knew that it would reach you in heaven, and he was intent on watching it soar until he couldn't see it anymore . It brought tears to my eyes to hear him acknowledge that it was on it's way to heaven to be with you. I am so proud of him for understanding where you are and knowing that you are with Jesus, who loves you and protects you. After all, this is what brings us peace everyday.
I look forward to every occassion that we can celebrate you Lily! Your life has meant so much to me, and I treasure every single memory that I have of my time with you. I've expressed so many times what you have done for me. Your short time here with me gave my entire life meaning. You brought me closer to the things that are most important in this world. You have taught me more than I could ever imagine that I would have taught you. You have been such an inspiration and source of strength for me.
I look forward to the day that I will see you again, but in the meantime, I remain grateful for your life and your influence on me. You know that Daddy, Owen and I are preparing to meet your baby sister really soon. I am really looking forward to seeing her and holding her because I believe that she will remind me of you. I imagine that the two of you would have had so much in common, and that you may even look a lot alike. I'm sure I will think of you often as I watch her grow and develop. She will be a very special reminder to me of you in so many ways. You have both brought such precious and significant meaning to each other's lives in my eyes. Although it is still sad for me to think that you had to join Jesus before she could come into our lives, the two of you will always be my very special little girls.
I pray that you felt the love of your family on your birthday as much as we all felt your presence with us. The same God who loves you and holds you close has been watching over us to offer us comfort and strength when we feel weak. He is our common bond, and it is through Him that I feel most connected to you. You consumed my mind and heart all day long, just as you have so many other days throughout this past year. You are always loved, and will never be forgotten.
Remember Psalm 23: 4 Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. Your Uncle Steve introduced this verse to me through music. He used to sing it in church, and it has always had special meaning to me. It is a song that I now think of you when I hear. Lily, God never lets go. He is always there, and I will be too. I love you to pieces.
Happy Birthday sweet baby girl!
Love always,
Mommy
Tuesday, May 31, 2011
Memorial Day weekend
As an American, I am humbled, honored, and full of pride for my country when I think about Memorial Day, and all that it means. With that said, I will forever have memories about what this holiday weekend has meant to me personally over the last year.
On Wednesday of last week, I remembered my 18 week sonogram appointment that I had when I was pregnant with Lily. It was the Wednesday before Memorial Day weekend that this appointment took place. Last week, I thought about the conflicting thoughts and emotions that I had when I left that appointment. I wanted so badly to feel hopeful and to cast out fear, but I had such a sinking feeling that, unfortunately, turned out to be my reality.
This year, we spent this weekend together as a family. We planted a memorial garden for Lily at home. We've been talking about doing this ever since we moved here last year. My mom took me to a local nursery, and helped me select the perfect things to put in the garden. I love that Lily's grandmother could be a part of making her garden so special. We even included a couple of plants and flowers that were able to be moved from my parents' yard to her garden. Nearly everything we planted has some special meaning, whether it is one of my favorite flowers or its name simply brings me peace and makes me smile (Touch of Heaven and Lily of the Valley). Creating this garden has given me a special place at home that I can look and instantly think of Lily. Doing this also allowed me to give this weekend a different meaning, and to feel inspired and hopeful.
I have a different perspective now on what Memorial Day may be like for so many other American families. I've thought a lot this weekend about all of the parents who have lost their children. Although I never experienced life with Lily, she was still in my life and will always be huge part of my life. She is my baby, and losing her has been like losing a part of me. Although Lily didn't fight in a war, she was fighting the battle of her life before her life even began. Memorial Day, like so many other days, will never be the same for me.
On Wednesday of last week, I remembered my 18 week sonogram appointment that I had when I was pregnant with Lily. It was the Wednesday before Memorial Day weekend that this appointment took place. Last week, I thought about the conflicting thoughts and emotions that I had when I left that appointment. I wanted so badly to feel hopeful and to cast out fear, but I had such a sinking feeling that, unfortunately, turned out to be my reality.
I remembered the phone call that I had with the doctor later that same afternoon. She began the conversation by saying "I'm very concerned". She proceeded to list the many abnormalities that showed up on the sonogram earlier that day. She rattled off information about dilated ureters, a thickened nucal fold, and brain structures that were not clearly visualized. I listened intently and took notes as she spoke. I very clearly remember her saying that this was definitely not an isolated birth defect, and that due to the multiple abnormalities, our baby likely had some kind of "chromosome abnormality or syndrome". She went on to suggest a higher level sonogram, and she suggested that we get it done as soon as possible. Her urgency hit me like a ton of bricks. I hung up the phone and sobbed.
Thursday of last week, I remembered the appointment that we had in Annapolis last year just 24 hours after we found out we were having the baby girl we always wanted. It was there that I had the very surreal experience of meeting with a genetic counselor who educated us on the many chromosome abnormalities, all while I wondered why she was going into so much detail about such horrific birth defects. Surely, this couldn't apply to us, I thought. I had myself convinced that our baby had Down's Syndrome, not a life threatening condition. I remembered her very sincere and patient approach. Although our local doctor had mentioned that the brain structures were not clearly visualized, I minimized this assuming that it was due to a faulty, low quality sonogram machine. I didn't realize that it was because the brain structures were not there. The reality was that our baby only had one "brain structure", not two. I remembered the way she looked at me, as I sat in disbelief listening to the facts and looking at her DNA charts. I remembered the way she hugged me after I used the last tissue from her box. I thought about the way the doctor delivered the worst case scenario news to us. We left the examination room to be greeted again by the genetic counselor who offered me another hug in the hallway. She knew that the doctor was only confirming her suspicions, and that we were now faced with a very harsh reality. I thought about the ride home, and the way that we delivered the news to our families. I thought about their reactions. Although this all occurred one year ago, these details will be forever burned in my memory.
Needless to say, the remainder of this weekend last year felt nothing like a holiday to me. We cancelled the plans that we had to go out of town. We had planned a fun-filled trip for our nearly 2 year old son to enjoy the remaining time that we would have with him as an only child. Little did we know that he would never meet his sibling, and that he would have much more one-on-one time with us in the months to come. Instead of watching him smile and laugh all weekend, he watched me cry and grieve.This year, we spent this weekend together as a family. We planted a memorial garden for Lily at home. We've been talking about doing this ever since we moved here last year. My mom took me to a local nursery, and helped me select the perfect things to put in the garden. I love that Lily's grandmother could be a part of making her garden so special. We even included a couple of plants and flowers that were able to be moved from my parents' yard to her garden. Nearly everything we planted has some special meaning, whether it is one of my favorite flowers or its name simply brings me peace and makes me smile (Touch of Heaven and Lily of the Valley). Creating this garden has given me a special place at home that I can look and instantly think of Lily. Doing this also allowed me to give this weekend a different meaning, and to feel inspired and hopeful.
I have a different perspective now on what Memorial Day may be like for so many other American families. I've thought a lot this weekend about all of the parents who have lost their children. Although I never experienced life with Lily, she was still in my life and will always be huge part of my life. She is my baby, and losing her has been like losing a part of me. Although Lily didn't fight in a war, she was fighting the battle of her life before her life even began. Memorial Day, like so many other days, will never be the same for me.
Tuesday, May 10, 2011
11 Months
With my pregnancy hormones in full swing, this has proven to be a very difficult month for me as I find myself just one month away from the time we lost our Lily, as well as the time we will meet our second daughter. It seems strangely conincidental that the timing of the one year anniversary of Lily's death is so close to the pending birth of our baby girl, who is due to arrive just a week and a half after Lily's delivery date.
Over the course of this last month, the realization that June may be an overwhelming month for me is an understatement. Although this pregnancy has gone by fairly quickly for me, especially once we were reassured that our baby appeared healthy, the realness of another delivery is upon me and has hit me hard. Once I hit the 30 week milestone in my pregnancy, I was immediately overwhelmed by emotion. I found myself fearing the worst possible outcome, and thinking about it at the most random times. It could be that I would remember pieces of another mother's tragic story of loss or that I would hear lyrics in a song that made me think of Lily, and next thing I knew, I was wiping away tears as I drove myself to work or to pick Owen up from daycare. These moments almost always hit me when I am alone, which always seems to be when I'm in the car. I am 35 weeks pregnant now, and thankfully, some of this has eased up a little.
Over the next 5 weeks, I anticipate many more ups and downs, waves of irrational fear, and emotional meltdowns. It was during this time in my pregnancy with Owen that I began to fear the labor and delivery process. I wondered how bad it would be, how much it would hurt, and how strong I would be. After experiencing the physical pain of labor and the emotional pain of delivering my deceased child, I now know how strong I am. That is no longer in question.
In preparing for my third delivery, I fear how healthy my child will be and if anything will go wrong during delivery that could jeopardize her health or her life. I realize that the statistics are in my favor, and the chances of something going wrong are slim; however, I also know what the statistics were that Lily would have Trisomy 18,and I never would have guessed that my family would be a part of that very small number, so I know that anything is possible.
I spent the majority of Mother's Day alone with my son, yet surrounded by all three of my children. I thought for a moment about the fact that while Owen was here with me, Lily was here in spirit, and our newest miracle was in my womb. They each consumed me physically, mentally, and emotionally throughout the day, and I was full of gratitude. I kept myself busy, and tried not to focus too much on the fact that it was pretty quiet and peaceful with only one child to play with instead of two.
My husband recently pointed out that I have been pregnant now for 13 out of the last 16 months. I thought about this a lot on Mother's Day, and realized that the experience of growing and nurturing your child while patiently anticipating their arrival into your world is the best gift you could ever have on Mother's Day, and I have been blessed to experience this feeling three times. What an amazing gift.
As I remind myself of my pregnancy mantra...Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God... my fear disipates and I am full of HoPE.
Over the course of this last month, the realization that June may be an overwhelming month for me is an understatement. Although this pregnancy has gone by fairly quickly for me, especially once we were reassured that our baby appeared healthy, the realness of another delivery is upon me and has hit me hard. Once I hit the 30 week milestone in my pregnancy, I was immediately overwhelmed by emotion. I found myself fearing the worst possible outcome, and thinking about it at the most random times. It could be that I would remember pieces of another mother's tragic story of loss or that I would hear lyrics in a song that made me think of Lily, and next thing I knew, I was wiping away tears as I drove myself to work or to pick Owen up from daycare. These moments almost always hit me when I am alone, which always seems to be when I'm in the car. I am 35 weeks pregnant now, and thankfully, some of this has eased up a little.
Over the next 5 weeks, I anticipate many more ups and downs, waves of irrational fear, and emotional meltdowns. It was during this time in my pregnancy with Owen that I began to fear the labor and delivery process. I wondered how bad it would be, how much it would hurt, and how strong I would be. After experiencing the physical pain of labor and the emotional pain of delivering my deceased child, I now know how strong I am. That is no longer in question.
In preparing for my third delivery, I fear how healthy my child will be and if anything will go wrong during delivery that could jeopardize her health or her life. I realize that the statistics are in my favor, and the chances of something going wrong are slim; however, I also know what the statistics were that Lily would have Trisomy 18,and I never would have guessed that my family would be a part of that very small number, so I know that anything is possible.
I spent the majority of Mother's Day alone with my son, yet surrounded by all three of my children. I thought for a moment about the fact that while Owen was here with me, Lily was here in spirit, and our newest miracle was in my womb. They each consumed me physically, mentally, and emotionally throughout the day, and I was full of gratitude. I kept myself busy, and tried not to focus too much on the fact that it was pretty quiet and peaceful with only one child to play with instead of two.
My husband recently pointed out that I have been pregnant now for 13 out of the last 16 months. I thought about this a lot on Mother's Day, and realized that the experience of growing and nurturing your child while patiently anticipating their arrival into your world is the best gift you could ever have on Mother's Day, and I have been blessed to experience this feeling three times. What an amazing gift.
As I remind myself of my pregnancy mantra...Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God... my fear disipates and I am full of HoPE.
Wednesday, April 6, 2011
10 months and a new perspective
Wow- 10 months. I'm not even sure where to begin this time. I've had lots of random thoughts recently that I will attempt to express in some organized fashion, but I can't promise that this entry will even make much sense.
First, I want to address the fundraising ideas that were discussed several months ago. Just to clarify, I am still very interested in coordinating an event to raise funds for the Trisomy 18 foundation. This interest and passion has not gone away; however, my originial intention to host something on or around Lily's birthday will not happen this year because our baby is due to arrive about a week later, and, even I realized that this is too much to handle this year. I do not want to let this dream go, though, so I will continue to brainstorm ways to make this happen in the future. I still appreciate every one of you who has offered ideas and suggestions, and volunteered to help. I haven't forgotten you, and I'm sure that I will re-enlist your help when the time comes. For this year, though, we are hoping acknowledge Lily's birthday and remember her in a smaller, more intimate way. Many of you know that we were never able to put together a memorial service for her, and that is something that we have regrets about. We were hoping that hosting a fundraiser in her honor would allow us to have a positive memorial for her, and because it won't happen this year, I already have mommy guilt about Lily's baby sister overshadowing her. I have made it a point to be clear on a number of occasions that another pregnancy and another child will not replace my experience with Lily. I have reminded myself repeatedly that this baby certainly will not ease the pain of Lily's death. I think that I've been so rigid about this way of thinking, though, that I have failed to see other perspectives.
I recently had a conversation with an aquaintance who didn't realize that I lost my Lily last summer. After seeing my pregnant belly, she asked "Oh, is this your 3rd?". Now, let me deviate momentarily to discuss my thoughts on the many variations of this question. I know for certain that the inevitable question of "How many children do you have?" is one of the most dreaded questions any parent who has lost a child can face. We all struggle at times with how best to answer this. Do I answer with the number of living children that I have, or do I go on to explain that I have one child in heaven. Sharing this information will no doubt alter the rest of the conversation and the way the other person responds to you, even the way they will look at you. I am always very mindful to not make others feel uncomfortable, however, by not acknowledging my daughter, it is as if she was not real or not important enough to talk about, and that is not acceptable to me. I'm not sure that others realize the impact that this seemingly simple question can have on people. The internal struggle, debate, and dialogue that happens in my mind before I let out an answer seems to go on for minutes, not the second that it probably takes for me to answer.
So, I responded to her question truthfully, and she offered me the most heart felt and genuine reaction I think I have ever experienced. She didn't look down or look away or apologize for asking. (A word of advice for anyone else in this situation- please don't apologize for asking the question. Most of us in this situation love the opportunity to talk about each of our children, living or not, but we just don't want to make you uncomfortable.) She immediately reached over and placed her hand on mine, and seemed interested in hearing about my daughter. She referred to her as my angel. The conversation moved back to my pregnancy and the feelings that I have had throughout the pregnancy, and when she learned that I am having another girl, she made the comment that Lily is coming back to me. It took me a second to process this idea. I smiled and nodded, but have since thought about this a lot. I've been so careful to see this baby as a completely separate individual, and I've honestly been somewhat struggling with the balance of processing my ongoing feelings about our experience with Lily and trying to not let fear have a negative impact on my pregnancy. I never once considered the idea that Lily is "coming back" to me. I've been so worried about leaving Lily behind and the fact that this baby's arrival is preventing me from celebrating Lily's life the way we intended to. I still don't really know how I feel about the idea that she is coming back to me, but it has brought me a new perspective that makes me feel a little more peace and joy.
First, I want to address the fundraising ideas that were discussed several months ago. Just to clarify, I am still very interested in coordinating an event to raise funds for the Trisomy 18 foundation. This interest and passion has not gone away; however, my originial intention to host something on or around Lily's birthday will not happen this year because our baby is due to arrive about a week later, and, even I realized that this is too much to handle this year. I do not want to let this dream go, though, so I will continue to brainstorm ways to make this happen in the future. I still appreciate every one of you who has offered ideas and suggestions, and volunteered to help. I haven't forgotten you, and I'm sure that I will re-enlist your help when the time comes. For this year, though, we are hoping acknowledge Lily's birthday and remember her in a smaller, more intimate way. Many of you know that we were never able to put together a memorial service for her, and that is something that we have regrets about. We were hoping that hosting a fundraiser in her honor would allow us to have a positive memorial for her, and because it won't happen this year, I already have mommy guilt about Lily's baby sister overshadowing her. I have made it a point to be clear on a number of occasions that another pregnancy and another child will not replace my experience with Lily. I have reminded myself repeatedly that this baby certainly will not ease the pain of Lily's death. I think that I've been so rigid about this way of thinking, though, that I have failed to see other perspectives.
I recently had a conversation with an aquaintance who didn't realize that I lost my Lily last summer. After seeing my pregnant belly, she asked "Oh, is this your 3rd?". Now, let me deviate momentarily to discuss my thoughts on the many variations of this question. I know for certain that the inevitable question of "How many children do you have?" is one of the most dreaded questions any parent who has lost a child can face. We all struggle at times with how best to answer this. Do I answer with the number of living children that I have, or do I go on to explain that I have one child in heaven. Sharing this information will no doubt alter the rest of the conversation and the way the other person responds to you, even the way they will look at you. I am always very mindful to not make others feel uncomfortable, however, by not acknowledging my daughter, it is as if she was not real or not important enough to talk about, and that is not acceptable to me. I'm not sure that others realize the impact that this seemingly simple question can have on people. The internal struggle, debate, and dialogue that happens in my mind before I let out an answer seems to go on for minutes, not the second that it probably takes for me to answer.
So, I responded to her question truthfully, and she offered me the most heart felt and genuine reaction I think I have ever experienced. She didn't look down or look away or apologize for asking. (A word of advice for anyone else in this situation- please don't apologize for asking the question. Most of us in this situation love the opportunity to talk about each of our children, living or not, but we just don't want to make you uncomfortable.) She immediately reached over and placed her hand on mine, and seemed interested in hearing about my daughter. She referred to her as my angel. The conversation moved back to my pregnancy and the feelings that I have had throughout the pregnancy, and when she learned that I am having another girl, she made the comment that Lily is coming back to me. It took me a second to process this idea. I smiled and nodded, but have since thought about this a lot. I've been so careful to see this baby as a completely separate individual, and I've honestly been somewhat struggling with the balance of processing my ongoing feelings about our experience with Lily and trying to not let fear have a negative impact on my pregnancy. I never once considered the idea that Lily is "coming back" to me. I've been so worried about leaving Lily behind and the fact that this baby's arrival is preventing me from celebrating Lily's life the way we intended to. I still don't really know how I feel about the idea that she is coming back to me, but it has brought me a new perspective that makes me feel a little more peace and joy.
Tuesday, March 15, 2011
Timeline
Have you noticed the Lilypie timeline on the right side of the screen for my blog? It documents how long it's been since our baby went to heaven. I'm really starting to resent that timeline. I remember when I was putting this blog together, and I added this feature, the image of the baby was not even up to the number 1 yet, and I wondered what things would feel like as she progressively moved forward getting further and further away from the 1. I thought things would be easier. People say that times heals all wounds, and that grief gets easier with time. In some ways, I can see the rationale behind these statements, but this is not something I would ever choose to say to someone experiencing grief.
I've caught myself a couple of times recently checking out this visual symbol of my grief timeline, and I find myself feeling angry because I don't feel a sense of accomplishment that I am further away from the 1. I remember when this angel was in the midst of the image of the tree, and I thought that was the eye of the storm for me. She has since moved pretty far away from that tree, and there is nothing left, nowhere for her to go. What will happen when the tree is completely off of the screen? It's like the storm is that much further behind me, but I don't really want it to be that far behind. I actually wish I could reverse time. I would intentionally choose to re-experience all of my feelings of grief and sorrow to have those hours with my baby in the hospital again. I would go through all of the agony again: the harsh reality of an imperfect sonogram, the appointments with the doctors, the discussions with the specialists, the dreaded walk into the hospital, the labor and delivery, the surgery after the delivery, the drive to the funeral home to pick up my daughter's ashes by myself, and the subsequent drive home with her in my lap (which really could be a post all by itself) because all of that was so closely related to the time I spent looking at her face and feeling her weight in my hands.
It's kind of strange how something so insignificant can cause such a profound emotional reaction, but looking at that silly baby angel on my timeline really just reminds me how long ago it was that I saw her face, and that feeling sometimes overrides the "benefits" of nine months of grief time under my belt. Every once in a while, something like this hits me so out of the blue that I never saw it coming and others around me would probably not understand. Maybe this is a just fleeting bout of negativity as this image struck me wrong today, but I do feel better after venting about it. I'll keep the timeline up for now, and re-evaluate how I feel about it again sometime in the next few months.
I've caught myself a couple of times recently checking out this visual symbol of my grief timeline, and I find myself feeling angry because I don't feel a sense of accomplishment that I am further away from the 1. I remember when this angel was in the midst of the image of the tree, and I thought that was the eye of the storm for me. She has since moved pretty far away from that tree, and there is nothing left, nowhere for her to go. What will happen when the tree is completely off of the screen? It's like the storm is that much further behind me, but I don't really want it to be that far behind. I actually wish I could reverse time. I would intentionally choose to re-experience all of my feelings of grief and sorrow to have those hours with my baby in the hospital again. I would go through all of the agony again: the harsh reality of an imperfect sonogram, the appointments with the doctors, the discussions with the specialists, the dreaded walk into the hospital, the labor and delivery, the surgery after the delivery, the drive to the funeral home to pick up my daughter's ashes by myself, and the subsequent drive home with her in my lap (which really could be a post all by itself) because all of that was so closely related to the time I spent looking at her face and feeling her weight in my hands.
It's kind of strange how something so insignificant can cause such a profound emotional reaction, but looking at that silly baby angel on my timeline really just reminds me how long ago it was that I saw her face, and that feeling sometimes overrides the "benefits" of nine months of grief time under my belt. Every once in a while, something like this hits me so out of the blue that I never saw it coming and others around me would probably not understand. Maybe this is a just fleeting bout of negativity as this image struck me wrong today, but I do feel better after venting about it. I'll keep the timeline up for now, and re-evaluate how I feel about it again sometime in the next few months.
Monday, March 7, 2011
9 months
For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. Psalm 139: 13-16.
I love this!! As much as I like to think about how these verses apply to our newest blessing still being formed in my womb, I like to think about this even more so with Lily. Given the circumstances, I could see how someone else in our situation might doubt these words, but I have no doubt that Lily was, quite literally, fearfully and wonderfully made. God had complete control over her body and her life. Her imperfections are what made her perfect. Her unformed, even deformed body, though difficult for others to see were easily seen by Him. To Him, and me, she was beautiful.
I love this!! As much as I like to think about how these verses apply to our newest blessing still being formed in my womb, I like to think about this even more so with Lily. Given the circumstances, I could see how someone else in our situation might doubt these words, but I have no doubt that Lily was, quite literally, fearfully and wonderfully made. God had complete control over her body and her life. Her imperfections are what made her perfect. Her unformed, even deformed body, though difficult for others to see were easily seen by Him. To Him, and me, she was beautiful.
Monday, February 7, 2011
8 Months
Yesterday marked the eight month anniversary of Lily's death. It was Superbowl Sunday. One year ago, on Superbowl Sunday, we found out that I was expecting. I can vividly remember the rush of feelings that we experienced that day as we stared at the row of pregnancy tests on the bathroom counter. We were beyond excited, and there was something kind of powerful about the two of us being the only ones who knew that I was carrying a child. I'm sure most other mothers can also remember how they felt on the day they found out they were pregnant. I don't ever want to forget those feelings. It was magical. Lily was loved and cherished from the very beginning. So, on the eight month anniversary, I am choosing to think only about that and nothing else because that makes me smile.
Sunday, January 23, 2011
19 weeks and 3 days on a Sunday...again
Today, I am 19 weeks and 3 days pregnant. I was exactly 19 weeks and 3 days pregnant with Lily when she left the safety of my body and went to the glory of heaven. Last night, I kept thinking about that since I was in labor at the hospital at that point in my pregnancy with Lily. It would have been at 3:25 this morning that she was born, also on a Sunday. I woke up a few times throughout the night last night thinking about it. I've thought about it all day today. I've anticipated having these reminiscent thoughts on June 6, which will mark the one year anniversary of our baby's death. It has come as a surprise to me to have these feelings now, on a random cold day in January, but obviously this pregnancy has brought up a range of emotions that I experienced throughout my pregnancy with Lily.
I realized that our newest miracle is now older than Lily will ever be. I can no longer compare this pregnancy to my pregnancy with Lily because I stopped being pregnant at this point, so prematurely. I almost feel like I am leaving her behind. I've read many blogs of women who have gotten pregnant after the loss of a baby, and it seems that feelings of guilt are not that uncommon. I can't say that I feel guilty for being pregnant with this baby, but I do often wonder if this child would have ever been a part of our lives if Lily were here with us. It is a strange feeling. I want to love all of my children equally and unconditionally, and I believe that this child is a blessing and a miracle because Lily's life and death allowed her to be a part of our lives at this time.
I remember how unnatural it felt to be nearly 20 weeks pregnant with a swollen belly, walking into the hospital feeling as if I were facing my own death, then leaving not pregnant anymore. I sometimes wonder how I ever made it through that experience. I talked to myself trying to convince myself that I was strong enough and brave enough. I remember thinking that I wasn't emotionally prepared to be in labor that soon. I was only half way there. I can't imagine being in labor today because I should still have 20 weeks to prepare myself. In addition to the odd pregnancy dreams that are to be expected, I dream often about going into early labor and giving birth to a baby who has prematurely passed away.
I pray every week for God's will to be done as He sees fit, but meanwhile I selfishly hope for at least one more week with my child in my womb. The weeks have slowly added up, but I still have nearly 20 more to go, and that's a lot. What would have been the final 20 weeks of my pregnancy with Lily were spent grieving. At times it felt like time stood still, while other times, I couldn't believe how quickly my due date came and went. I have prayed more for my unborn child during this pregnancy than I did with either of my previous pregnancies, and it has brought me much needed peace, especially when I'm 19 weeks and 3 days.
I realized that our newest miracle is now older than Lily will ever be. I can no longer compare this pregnancy to my pregnancy with Lily because I stopped being pregnant at this point, so prematurely. I almost feel like I am leaving her behind. I've read many blogs of women who have gotten pregnant after the loss of a baby, and it seems that feelings of guilt are not that uncommon. I can't say that I feel guilty for being pregnant with this baby, but I do often wonder if this child would have ever been a part of our lives if Lily were here with us. It is a strange feeling. I want to love all of my children equally and unconditionally, and I believe that this child is a blessing and a miracle because Lily's life and death allowed her to be a part of our lives at this time.
I remember how unnatural it felt to be nearly 20 weeks pregnant with a swollen belly, walking into the hospital feeling as if I were facing my own death, then leaving not pregnant anymore. I sometimes wonder how I ever made it through that experience. I talked to myself trying to convince myself that I was strong enough and brave enough. I remember thinking that I wasn't emotionally prepared to be in labor that soon. I was only half way there. I can't imagine being in labor today because I should still have 20 weeks to prepare myself. In addition to the odd pregnancy dreams that are to be expected, I dream often about going into early labor and giving birth to a baby who has prematurely passed away.
I pray every week for God's will to be done as He sees fit, but meanwhile I selfishly hope for at least one more week with my child in my womb. The weeks have slowly added up, but I still have nearly 20 more to go, and that's a lot. What would have been the final 20 weeks of my pregnancy with Lily were spent grieving. At times it felt like time stood still, while other times, I couldn't believe how quickly my due date came and went. I have prayed more for my unborn child during this pregnancy than I did with either of my previous pregnancies, and it has brought me much needed peace, especially when I'm 19 weeks and 3 days.
Tuesday, January 11, 2011
18 weeks
I've been thinking a lot about Lily the last couple of weeks. I was 18 weeks pregnant with her when we learned the devastating news of her condition. I am 18 weeks pregnant with her sister now. It feels like a major emotional milestone for me to be at this point. Sometimes I perceive that others compare Lily's death to an early pregnancy miscarriage. I don't think of it that way at all. Not to minimize a miscarriage because I am certain that it is equally as devastating to lose a baby earlier in the pregnancy, but I didn't lose an embryo or just a fetus. I lost my daughter.
If you could see me now, you couldn't deny that I am growing a life in my womb. My pregnant belly is quite obvious. I can't disregard my daughter's existence merely because she has not been developing for 40 weeks. During these 18 weeks, she has grown limbs, fingers, toes, ears, eyes, a mouth, a nose, a brain, a heart, a stomach, kidneys, and the many other parts that make her human. She is here now, and I am remembering my feelings of guilt following that very memorable doctor's appointment during my pregnany with Lily. This time, I am reminding myself how fortunate I am to have had the last 18 weeks with my daughter. This time, I am embracing each day and each week as it comes, and feeling an overwhelming sense of gratitude.
I still wonder what things would have been like had Lily been a healthy baby girl. Obviously, I will never have the opportunity to have the answer to that, but I do know how my life has been blessed and enriched as a result of her 19 weeks of life, and this week, during my 18th week of pregnancy, I'm thinking of her a lot.
If you could see me now, you couldn't deny that I am growing a life in my womb. My pregnant belly is quite obvious. I can't disregard my daughter's existence merely because she has not been developing for 40 weeks. During these 18 weeks, she has grown limbs, fingers, toes, ears, eyes, a mouth, a nose, a brain, a heart, a stomach, kidneys, and the many other parts that make her human. She is here now, and I am remembering my feelings of guilt following that very memorable doctor's appointment during my pregnany with Lily. This time, I am reminding myself how fortunate I am to have had the last 18 weeks with my daughter. This time, I am embracing each day and each week as it comes, and feeling an overwhelming sense of gratitude.
I still wonder what things would have been like had Lily been a healthy baby girl. Obviously, I will never have the opportunity to have the answer to that, but I do know how my life has been blessed and enriched as a result of her 19 weeks of life, and this week, during my 18th week of pregnancy, I'm thinking of her a lot.
Wednesday, January 5, 2011
7 months and birthday cake
For the most part, I happily welcomed the new year this year. I've never really been one to get too excited about a new year. I'm not big on new year's resolutions or the idea of starting a new year fresh. I like to think of each day as a fresh start, no matter what year it is. This year was a little different. 2010 was not my best year, although, it also happens to be one I never want to forget. So, to see it come to an end was bittersweet.
We had a wonderful Christmas with our son despite the obvious hole in our family. Our son seems to understand the meaning of Christmas, which makes me proud. He knows that Christmas is Jesus' birthday, although he kept asking where Jesus is and whether there would be birthday cake involved. This gave us the opportunity to have an incredible conversation a few weeks ago. I tried to explain that Jesus is in his heart, but that didn't seem to satisfy his curious little mind. I went on to talk about Jesus being in heaven, and this intrigued him. His interest in heaven compelled me to share that Jesus is in heaven with Lily. I've been thinking more and more lately about how and when the time would be right to tell him about Lily, and now that he is aware that he will be having a baby sister, I'm thinking about it even more because I want him to know that she is not his only baby sister. Before Lily died, he was aware that there was a baby in my belly, and he had decided on his own that it was a girl. I've wondered recently if he thinks I am carrying the same baby that we've made mention to for nearly a year. I certainly don't want to confuse him by saying more than he can comprehend, but I also don't want to dismiss the life that she had when he was so aware of it. I have pointed out that his baby sister, Lily, is in heaven with Jesus, and his other baby sister is in my belly getting big and strong just to make sure he isn't confusing the two.
Who knew that the explanation about the meaning of Christmas would open the door to talk to my two year old about Lily. I had a feeling that when the time was right to talk to him about her, I would know it, and I'm so glad that it happened that way. It was heart warming to look into his big blue eyes as he listened very intently and nodded his head as I talked. He even asked to pray for Lily that night, which was incredibly touching since his recent prayer requests have been for things like the characters from Madagascar and Cars.
So, if Lily and Jesus were in heaven together on Jesus' birthday, do you think they shared birthday cake?
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