Who knew my worst nightmare would turn out to be an amazing blessing

Over the nine months I was pregnant with Hailey, I prayed for her development and health almost every day. I modified my eating habits and lifestyle so that I could be healthy and have a healthy baby. I took prenatal vitamins daily. I didn't drink or smoke (not that I do normally anyway) or have too much caffeine or engage in any other risky behavior for pregnant women. I prayed and did what I was supposed to do in order to have a healthy baby. According to statistics, because of my age, my weight, my health history, etc. the chances of Josh and I have a baby with a health problem was very unlikely.

But it all didn't matter. In the end, I was not in control of my daughter's creation or development or even life. God was.

In all honesty, having a baby that was 'retarded' or that had mental or physical problems was probably one of the things I feared and dreaded happening to me (or my baby) the most. Truth be told, I didn't want a 'retarded' child or a child with disabilities. Not me. I didn't deserve it. I didn't want it - for me, for my baby. I wanted her to be healthy and have a normal happy life. And I tried to do everything I could to make sure my baby was healthy and I didn't have that problem. Statistics were in my favor after all...

My greatest fear was realized the day Hailey was born. Initially, we didn't know what was 'wrong' with her, but the first thing I did know was that her left arm/ hand did not develop correctly and that she also had potential problems with her left hip and leg. Physical disabilities. I remember the cloudy thinking (due to the meds wearing off) in the hours after giving birth to her that it was okay if she had crippled arm or leg. That's no big deal. She's healthy otherwise...so I thought. And I remember thinking how crazy I was for worrying that I couldn't love my own child as much as I should if she had a disability...

The picture below is what she looked like the first time I saw her. Definitely not the dream that every mother has in her head of what her beautiful baby will look like. To all of you reading this out there, you probably almost cringe at this picture ... because a part of me always does ...



but I can't explain what I felt the moment I saw her and held her. She wasn't a 'normal' baby. She wasn't a 'healthy' baby. And she was going to have problems. My worst nightmare realized....But in that moment, I could not have loved her more. She was absolutely beautiful - even with all of the bandages and cords and things attached to her ...and her curled up little hand... I guess it's only something a mother can feel and see...but I loved her with my entire being and thought she was the most beautiful thing in the world...

I almost laugh back on it now thinking how I told God I was 'fine' with it if Hailey had physical disabilities. How selfish and shallow am I to say or think that? And then to learn later what was really 'wrong' with her - a chromosomal disorder - possibly Down's Syndrome or one of the other Trisomies... a 'retarded' baby...and I cringe when I write these things because I hate that label but that's the label I used in my head. I remember I kept thinking, not me, not us, not our baby. We didn't, she didn't 'deserve' this... we did all we could...we're 'good' healthy people...not us! like someone else 'deserves' this more than we did. ha... i really can't believe my own thoughts, they were so terrible...and every day I ask God and Hailey to forgive me for those thoughts and fears I had when I was pregnant...and I thank them for showing me how very wrong I was in all of my thinking...

Well Hailey ended up having one of the worst genetic disorders out there because it was lethal. There was no way she was would survive to be more than 1 year old no matter what we did. She had more health problems than I could have imagined my baby could have. What happened to Hailey was probably my worst nightmare, like I said. But that was my thinking when I was pregnant. Once I laid eyes on my beautiful baby girl...she was the best thing that ever happened to me. She wasn't a nightmare. She was an AMAZING blessing.

Many people find out that their child will have one of the Trisomy disorders while they're pregnant. And unfortunately, many of these parents will choose to have an abortion... All I can say to anyone out there who might be in a similar situation: your child is not 'retarded' or any less of an amazing baby than if s/he was a 'normal' baby. Your child may have problems and it may be very difficult. But s/he is a child nonetheless and is a beautiful creation - even if it's not in the 'stereotypical' sense. You will fall in love instantly. And your baby will bring you more joy than you could ever have imagined. But of course, you will experience more pain and sorrow than the average new parent, but the joy and the love overwhelms and conquers those negatives...

I also have to say...and this is me being honest and running the risk of offending people... but I've been looking into all those Trisomy organizations and foundations out there...and honestly, I haven't found one I like or agree with entirely. I really struggle with this. My problem with all of these groups is that most of them have in their mission to find a cure for genetic disorders like Trisomy 18. You might think I'm crazy that I don't want someone to find a cure for what my daughter died from. But I don't.

There is something 'wrong' in the thinking behind these groups that want to find a cure. Trisomy 18 is a genetic DISORDER- NOT a DISEASE that can be cured. Trisomy 18 occurs when life is created - when egg meets sperm and genetic material forms new life. Because of my faith, I believe that God creates all life - he knits together all those inner delicate parts of our body (like the Pslam says). Josh and I had no control over how Hailey was created - even science admits that Trisomy 18 is 'spontaneous' and is NOT the result of something the parents did or did not do. It is totally 'random.' But God isn't random. God is perfect in His plans. And I honestly believe that God created Hailey with Trisomy 18. I cannot find myself supporting an organization that wants to 'cure' Trisomy 18 or other genetic disorders. Because that gets into genetic engineering and manipulating God's creations and other things that I personally do not believe in.

God is in control and he was in control the day and days he created Hailey in my womb. Hailey was God's creation. God and Hailey taught me a lot (and I will do a separate blog on this another time..but for now...) my ideas of beauty and love definitely changed because of them.

So of course I wanted a healthy, 'normal' baby who I could raise and see become an adult...don't get me wrong... there are still days I wish that would have happened...and there are days where my life feels like a living nightmare...but in the end, it's not. My life is better because of Hailey. And God had a different plan than my own, and I trust in His plans for my life and for Hailey's. We don't always understand His plans, but thankfully He has been showing me a little of what His plan was with Hailey's life...

***********************
To my Hailey,
You were an absolutely beautiful baby girl with an amazing personality and bright spirit. (You were my very own Hailey's comet, a shooting star in my life). I thank God for blessing me with you every single day. You were simply awesome. You brought (and still bring) me immeasurable joy and love. Thank you. And thank you for teaching me so much...who knew that a child who only lived 36 days could teach an adult so much... but you did. You changed my life forever and I am forever grateful to call you my daughter. I love telling people about you and bragging about you. I try, but words just can't express how awesome you are and how much I love you.
Love always, your Mom

Who knew my worst nightmare would turn out to be an amazing blessing

Over the nine months I was pregnant with Hailey, I prayed for her development and health almost every day. I modified my eating habits and lifestyle so that I could be healthy and have a healthy baby. I took prenatal vitamins daily. I didn't drink or smoke (not that I do normally anyway) or have too much caffeine or engage in any other risky behavior for pregnant women. I prayed and did what I was supposed to do in order to have a healthy baby. According to statistics, because of my age, my weight, my health history, etc. the chances of Josh and I have a baby with a health problem was very unlikely.

But it all didn't matter. In the end, I was not in control of my daughter's creation or development or even life. God was.

In all honesty, having a baby that was 'retarded' or that had mental or physical problems was probably one of the things I feared and dreaded happening to me (or my baby) the most. Truth be told, I didn't want a 'retarded' child or a child with disabilities. Not me. I didn't deserve it. I didn't want it - for me, for my baby. I wanted her to be healthy and have a normal happy life. And I tried to do everything I could to make sure my baby was healthy and I didn't have that problem. Statistics were in my favor after all...

My greatest fear was realized the day Hailey was born. Initially, we didn't know what was 'wrong' with her, but the first thing I did know was that her left arm/ hand did not develop correctly and that she also had potential problems with her left hip and leg. Physical disabilities. I remember the cloudy thinking (due to the meds wearing off) in the hours after giving birth to her that it was okay if she had crippled arm or leg. That's no big deal. She's healthy otherwise...so I thought. And I remember thinking how crazy I was for worrying that I couldn't love my own child as much as I should if she had a disability...

The picture below is what she looked like the first time I saw her. Definitely not the dream that every mother has in her head of what her beautiful baby will look like. To all of you reading this out there, you probably almost cringe at this picture ... because a part of me always does ...



but I can't explain what I felt the moment I saw her and held her. She wasn't a 'normal' baby. She wasn't a 'healthy' baby. And she was going to have problems. My worst nightmare realized....But in that moment, I could not have loved her more. She was absolutely beautiful - even with all of the bandages and cords and things attached to her ...and her curled up little hand... I guess it's only something a mother can feel and see...but I loved her with my entire being and thought she was the most beautiful thing in the world...

I almost laugh back on it now thinking how I told God I was 'fine' with it if Hailey had physical disabilities. How selfish and shallow am I to say or think that? And then to learn later what was really 'wrong' with her - a chromosomal disorder - possibly Down's Syndrome or one of the other Trisomies... a 'retarded' baby...and I cringe when I write these things because I hate that label but that's the label I used in my head. I remember I kept thinking, not me, not us, not our baby. We didn't, she didn't 'deserve' this... we did all we could...we're 'good' healthy people...not us! like someone else 'deserves' this more than we did. ha... i really can't believe my own thoughts, they were so terrible...and every day I ask God and Hailey to forgive me for those thoughts and fears I had when I was pregnant...and I thank them for showing me how very wrong I was in all of my thinking...

Well Hailey ended up having one of the worst genetic disorders out there because it was lethal. There was no way she was would survive to be more than 1 year old no matter what we did. She had more health problems than I could have imagined my baby could have. What happened to Hailey was probably my worst nightmare, like I said. But that was my thinking when I was pregnant. Once I laid eyes on my beautiful baby girl...she was the best thing that ever happened to me. She wasn't a nightmare. She was an AMAZING blessing.

Many people find out that their child will have one of the Trisomy disorders while they're pregnant. And unfortunately, many of these parents will choose to have an abortion... All I can say to anyone out there who might be in a similar situation: your child is not 'retarded' or any less of an amazing baby than if s/he was a 'normal' baby. Your child may have problems and it may be very difficult. But s/he is a child nonetheless and is a beautiful creation - even if it's not in the 'stereotypical' sense. You will fall in love instantly. And your baby will bring you more joy than you could ever have imagined. But of course, you will experience more pain and sorrow than the average new parent, but the joy and the love overwhelms and conquers those negatives...

I also have to say...and this is me being honest and running the risk of offending people... but I've been looking into all those Trisomy organizations and foundations out there...and honestly, I haven't found one I like or agree with entirely. I really struggle with this. My problem with all of these groups is that most of them have in their mission to find a cure for genetic disorders like Trisomy 18. You might think I'm crazy that I don't want someone to find a cure for what my daughter died from. But I don't.

There is something 'wrong' in the thinking behind these groups that want to find a cure. Trisomy 18 is a genetic DISORDER- NOT a DISEASE that can be cured. Trisomy 18 occurs when life is created - when egg meets sperm and genetic material forms new life. Because of my faith, I believe that God creates all life - he knits together all those inner delicate parts of our body (like the Pslam says). Josh and I had no control over how Hailey was created - even science admits that Trisomy 18 is 'spontaneous' and is NOT the result of something the parents did or did not do. It is totally 'random.' But God isn't random. God is perfect in His plans. And I honestly believe that God created Hailey with Trisomy 18. I cannot find myself supporting an organization that wants to 'cure' Trisomy 18 or other genetic disorders. Because that gets into genetic engineering and manipulating God's creations and other things that I personally do not believe in.

God is in control and he was in control the day and days he created Hailey in my womb. Hailey was God's creation. God and Hailey taught me a lot (and I will do a separate blog on this another time..but for now...) my ideas of beauty and love definitely changed because of them.

So of course I wanted a healthy, 'normal' baby who I could raise and see become an adult...don't get me wrong... there are still days I wish that would have happened...and there are days where my life feels like a living nightmare...but in the end, it's not. My life is better because of Hailey. And God had a different plan than my own, and I trust in His plans for my life and for Hailey's. We don't always understand His plans, but thankfully He has been showing me a little of what His plan was with Hailey's life...

***********************
To my Hailey,
You were an absolutely beautiful baby girl with an amazing personality and bright spirit. (You were my very own Hailey's comet, a shooting star in my life). I thank God for blessing me with you every single day. You were simply awesome. You brought (and still bring) me immeasurable joy and love. Thank you. And thank you for teaching me so much...who knew that a child who only lived 36 days could teach an adult so much... but you did. You changed my life forever and I am forever grateful to call you my daughter. I love telling people about you and bragging about you. I try, but words just can't express how awesome you are and how much I love you.
Love always, your Mom

Time to mourn?

Well it's safe to say that the month of January has probably been the worst month of my life. I lost my daughter on January 6 from Trisomy 18 and my father January 22, the day before my 25th birthday, from cancer. They were two of the people I loved the most in my life, and it's so hard now that they're both gone.

In both cases I knew that I was going to lose them before they passed away...which is a blessing I suppose. I was able to say my goodbyes to them before they passed and was able to make sure that I had no 'unfinished business' I guess you could say. I loved them both with all my heart and I made sure they both knew it. I also have the comfort that not many people have in knowing that they are both in Heaven...that will be a separate blog topic I plan to write in the future.

I guess my problem that I'm having is that I feel sort of 'robbed' of having time to properly mourn my daughter and time to properly mourn my father. Some people think (including myself at times), that perhaps this is a blessing to have both of them pass so closely together so that all the pain is at once which makes it perhaps easier to deal with (?)... other people (including myself at times), think that this is just unbelievably cruel and almost unbearable having to deal with all the pain at once...

I spent about 2 weeks mourning Hailey and remembering her...and then that time was cut short by my dad's passing at which point all of my attention went to him and I barely had time to think about Hailey... now that my dad's memorial service is over and I'm back in AL... I'm back to trying to deal with both losses at once. When I try to remember Hailey now, it's even harder - which I attribute to the fact that my process of remembering and mourning her was interrupted to do the same with my dad.

As I mentioned in an earlier post... my thoughts went back and forth between Hailey's struggles and my dad's struggles when they were both alive...and now they go back and forth between Hailey's death and my dad's death.

I don't know how to mourn them both...I feel like I don't have time to mourn them both...which I know is weird especially since I have so much time on my hands...

Thankfully, I am able to think of them both when I envision where they are now: in Heaven together...both in perfect bodies, pain free, disease free... Hailey in the arms of her Grandpa...and that is a comforting thought.

Lately I've been thinking a lot about things like why did Hailey have to have Trisomy 18 and why did my dad have to have cancer and why did they both have to experience sickness and pain... and I've also been thinking about things like why do I have to feel pain in losing them and why is there death and why do I have to mourn...

Well because of my faith and my belief in the truth of God's word, God reminds me that I know the answers to those questions and those answers bring me some understanding and comfort:

-Pain and sickness and the like are a result of man's fall and evil entering the world (Genesis 3, Romans 8)
-God does not take pleasure in our pain or suffering, but He will allow it to happen (Job 1, 2)
-God helps us through our pain and suffering and can use it for good (Romans 8)
-God comforts those who mourn (Matthew 5:4)
-God wipes away suffering and sickness, etc. in Heaven (Revelation 21:1-4)

So I know that there will be a time to mourn and a time to be comforted (Ecclesiastes 3:4)... I just need to figure out how to feel like I can mourn and grieve both my dad and Hailey 'properly'...

Time to mourn?

Well it's safe to say that the month of January has probably been the worst month of my life. I lost my daughter on January 6 from Trisomy 18 and my father January 22, the day before my 25th birthday, from cancer. They were two of the people I loved the most in my life, and it's so hard now that they're both gone.

In both cases I knew that I was going to lose them before they passed away...which is a blessing I suppose. I was able to say my goodbyes to them before they passed and was able to make sure that I had no 'unfinished business' I guess you could say. I loved them both with all my heart and I made sure they both knew it. I also have the comfort that not many people have in knowing that they are both in Heaven...that will be a separate blog topic I plan to write in the future.

I guess my problem that I'm having is that I feel sort of 'robbed' of having time to properly mourn my daughter and time to properly mourn my father. Some people think (including myself at times), that perhaps this is a blessing to have both of them pass so closely together so that all the pain is at once which makes it perhaps easier to deal with (?)... other people (including myself at times), think that this is just unbelievably cruel and almost unbearable having to deal with all the pain at once...

I spent about 2 weeks mourning Hailey and remembering her...and then that time was cut short by my dad's passing at which point all of my attention went to him and I barely had time to think about Hailey... now that my dad's memorial service is over and I'm back in AL... I'm back to trying to deal with both losses at once. When I try to remember Hailey now, it's even harder - which I attribute to the fact that my process of remembering and mourning her was interrupted to do the same with my dad.

As I mentioned in an earlier post... my thoughts went back and forth between Hailey's struggles and my dad's struggles when they were both alive...and now they go back and forth between Hailey's death and my dad's death.

I don't know how to mourn them both...I feel like I don't have time to mourn them both...which I know is weird especially since I have so much time on my hands...

Thankfully, I am able to think of them both when I envision where they are now: in Heaven together...both in perfect bodies, pain free, disease free... Hailey in the arms of her Grandpa...and that is a comforting thought.

Lately I've been thinking a lot about things like why did Hailey have to have Trisomy 18 and why did my dad have to have cancer and why did they both have to experience sickness and pain... and I've also been thinking about things like why do I have to feel pain in losing them and why is there death and why do I have to mourn...

Well because of my faith and my belief in the truth of God's word, God reminds me that I know the answers to those questions and those answers bring me some understanding and comfort:

-Pain and sickness and the like are a result of man's fall and evil entering the world (Genesis 3, Romans 8)
-God does not take pleasure in our pain or suffering, but He will allow it to happen (Job 1, 2)
-God helps us through our pain and suffering and can use it for good (Romans 8)
-God comforts those who mourn (Matthew 5:4)
-God wipes away suffering and sickness, etc. in Heaven (Revelation 21:1-4)

So I know that there will be a time to mourn and a time to be comforted (Ecclesiastes 3:4)... I just need to figure out how to feel like I can mourn and grieve both my dad and Hailey 'properly'...

Temporary Hiatus

I will be traveling back to IL tomorrow to say goodbye to my dad and spend the last day or so with him before he passes...so blogging may be on a temporary hiatus for awhile...

Temporary Hiatus

I will be traveling back to IL tomorrow to say goodbye to my dad and spend the last day or so with him before he passes...so blogging may be on a temporary hiatus for awhile...

Schedules, Belches, and Angel Kisses

Per my cousin's request - I will write my post today about some of the fun facts about Hailey and some of the things I loved about her.

First of all Hailey was the BEST baby a mother could ask for - honestly. Anyone who spent time with her, like both of her grandmas, could tell you she was one of the BEST behaved babies they've ever met - especially once she got out of the hospital. Don't get me wrong - she had her moments of fussiness but they were few and far between. She was pretty consistent and predictable in her behaviors and routines. She rarely cried. And this was all pretty amazing considering everything her little body was fighting to do and the problems she had...

Here's a bit of our daily routine we managed to have once we got home and settled with her - this is actually from an email I sent one of my best friends Jan 5th (the day before Hailey passed):

Our family is doing well. We've been on our own officially for 2 days now and it's going well... Josh and I each take a 4 or 5 hour shift during the night to take care of Hailey. I usually have her from 11p to 4am and he takes her from 4-9am. She sleeps in her playyard crib in our room - so we sleep but when she needs to be fed or changed in the middle of the night one of us takes care of her depending on whose shift it is. She's on a pretty consistent schedule. She eats about every 3 hrs and gets changed about every 2 hrs. She's taking about 30-40ml by bottle of formula each feeding (which is awesome considering when we first started bottle feeding her in the hospital getting her to take 10ml was an accomplishment). She gets about 50ml when we tube feed her - which we do twice a day. Usually when she's napping during the day we're cleaning or cooking or doing something. I actually feel like we have more time than I expected - like I can find time to read still and time to take Opie on walks so it's nice. We're busy but its not a stressful busy... But she's a cutie pie and is totally worth it. :) Can't wait to take more videos of her.

She does 2 really funny things - 1, she belches very loudly after eating and 2, she sticks out her tongue a lot when she's hungry - so i'm hoping to capture those with our new camcorder soon.

So Hailey's schedule was eating every 3 hrs, and we changed her about every 2 hrs. She didn't really have a sleep schedule. She did sleep a lot, as most newborns do. She was much more awake the last couple of weeks she was with us. When she was awake she'd just look every which way with wide eyes and was good at self-entertaining - so even when she was awake at night she didn't cry much or anything. She laid there contently swaddled in her little blanket.

I had gotten into the routine of waking up around 8 or 9am when Josh's night shift was over and do a feeding while he got another hour of sleep and showered. Then he would get ready for work and take over watching Hailey while I showered. Then Hailey would usually go to sleep and while Josh was gone I would wash her bottles and switch over her things from our bedroom to the living room. Then I'd move Hailey out to the living room and cuddle her until Josh got home for lunch. Once things were settled I'd work on brunch/lunch for Josh and I, and we'd eat whenever/however we could. Then we spent the rest of the day with her - feeding, burping, changing, cuddling, loving, kissing, etc.

I have to share about burping her... In the hospital burping her was somewhat frustrating for me. It was difficult to get a good position for burping her because of her stomach (stitches, bandages, etc.) - I was really afraid she would be in pain if she was put over the shoulder to be burped. The nurse suggested just patting her on the back while I held her and rocked her. The first time I tried this I was successful and did get a little burp! But after that, I was never really successful with it again. Josh's mom was in the hospital to help us, and she had more success with the burps - but it still wasn't easy. Even when we got home with her I had trouble getting her to burp while Josh and his mom became more and more successful. Of course, as a mom, I was getting frustrated with myself.

One day I asked Josh to show me how he got her to burp, and I will never forget what happened. He propped Hailey up in one of these positions (see photo) and just held her there for a minute or so after feeding - he didn't even pat her or move her or do anything - and all of a sudden a HUGE burp came out of her - I mean it was literally like a loud belch. It was hilarious. I was like are you kidding me?? You didn't even do anything and she burps like that?! But from then on that's mostly how we burped her - we propped her up, gave her a pat or two sometimes, and then these loud belches came out of this tiny little body. I loved it...



So another thing I want to share about Hailey is her angel kiss. Hailey had a sort of "birth mark" in between her eyebrows - it was a reddish mark. When the nurses and doctors were explaining all of the things "wrong" and "right" with Hailey, the NICU nurses explained that they called this type of birth mark an angel kiss (and they also explained that they called babies with birth marks like that on the back of their necks stork bites). :) Sometimes the angel kiss would disappear over time they told us, but Hailey's stayed with her. On the day Josh's family left from their Christmas visit, Hailey's angel kiss became the brightest we had ever seen it. To this day I don't know why it happened, but her angel kiss looked like a flame. It was like she was burning bright with love because of them or something! In this photo you can kind of make out her angel kiss if you look hard - I loved her angel kiss! (and she's taking a snooze in the photo if you can't tell...) :)



I could go on and on (and probably will some other time) but this post is already long enough and I need to get going...

"Thank you for all of the unique and wonderful things about Hailey Lord!"

Schedules, Belches, and Angel Kisses

Per my cousin's request - I will write my post today about some of the fun facts about Hailey and some of the things I loved about her.

First of all Hailey was the BEST baby a mother could ask for - honestly. Anyone who spent time with her, like both of her grandmas, could tell you she was one of the BEST behaved babies they've ever met - especially once she got out of the hospital. Don't get me wrong - she had her moments of fussiness but they were few and far between. She was pretty consistent and predictable in her behaviors and routines. She rarely cried. And this was all pretty amazing considering everything her little body was fighting to do and the problems she had...

Here's a bit of our daily routine we managed to have once we got home and settled with her - this is actually from an email I sent one of my best friends Jan 5th (the day before Hailey passed):

Our family is doing well. We've been on our own officially for 2 days now and it's going well... Josh and I each take a 4 or 5 hour shift during the night to take care of Hailey. I usually have her from 11p to 4am and he takes her from 4-9am. She sleeps in her playyard crib in our room - so we sleep but when she needs to be fed or changed in the middle of the night one of us takes care of her depending on whose shift it is. She's on a pretty consistent schedule. She eats about every 3 hrs and gets changed about every 2 hrs. She's taking about 30-40ml by bottle of formula each feeding (which is awesome considering when we first started bottle feeding her in the hospital getting her to take 10ml was an accomplishment). She gets about 50ml when we tube feed her - which we do twice a day. Usually when she's napping during the day we're cleaning or cooking or doing something. I actually feel like we have more time than I expected - like I can find time to read still and time to take Opie on walks so it's nice. We're busy but its not a stressful busy... But she's a cutie pie and is totally worth it. :) Can't wait to take more videos of her.

She does 2 really funny things - 1, she belches very loudly after eating and 2, she sticks out her tongue a lot when she's hungry - so i'm hoping to capture those with our new camcorder soon.

So Hailey's schedule was eating every 3 hrs, and we changed her about every 2 hrs. She didn't really have a sleep schedule. She did sleep a lot, as most newborns do. She was much more awake the last couple of weeks she was with us. When she was awake she'd just look every which way with wide eyes and was good at self-entertaining - so even when she was awake at night she didn't cry much or anything. She laid there contently swaddled in her little blanket.

I had gotten into the routine of waking up around 8 or 9am when Josh's night shift was over and do a feeding while he got another hour of sleep and showered. Then he would get ready for work and take over watching Hailey while I showered. Then Hailey would usually go to sleep and while Josh was gone I would wash her bottles and switch over her things from our bedroom to the living room. Then I'd move Hailey out to the living room and cuddle her until Josh got home for lunch. Once things were settled I'd work on brunch/lunch for Josh and I, and we'd eat whenever/however we could. Then we spent the rest of the day with her - feeding, burping, changing, cuddling, loving, kissing, etc.

I have to share about burping her... In the hospital burping her was somewhat frustrating for me. It was difficult to get a good position for burping her because of her stomach (stitches, bandages, etc.) - I was really afraid she would be in pain if she was put over the shoulder to be burped. The nurse suggested just patting her on the back while I held her and rocked her. The first time I tried this I was successful and did get a little burp! But after that, I was never really successful with it again. Josh's mom was in the hospital to help us, and she had more success with the burps - but it still wasn't easy. Even when we got home with her I had trouble getting her to burp while Josh and his mom became more and more successful. Of course, as a mom, I was getting frustrated with myself.

One day I asked Josh to show me how he got her to burp, and I will never forget what happened. He propped Hailey up in one of these positions (see photo) and just held her there for a minute or so after feeding - he didn't even pat her or move her or do anything - and all of a sudden a HUGE burp came out of her - I mean it was literally like a loud belch. It was hilarious. I was like are you kidding me?? You didn't even do anything and she burps like that?! But from then on that's mostly how we burped her - we propped her up, gave her a pat or two sometimes, and then these loud belches came out of this tiny little body. I loved it...



So another thing I want to share about Hailey is her angel kiss. Hailey had a sort of "birth mark" in between her eyebrows - it was a reddish mark. When the nurses and doctors were explaining all of the things "wrong" and "right" with Hailey, the NICU nurses explained that they called this type of birth mark an angel kiss (and they also explained that they called babies with birth marks like that on the back of their necks stork bites). :) Sometimes the angel kiss would disappear over time they told us, but Hailey's stayed with her. On the day Josh's family left from their Christmas visit, Hailey's angel kiss became the brightest we had ever seen it. To this day I don't know why it happened, but her angel kiss looked like a flame. It was like she was burning bright with love because of them or something! In this photo you can kind of make out her angel kiss if you look hard - I loved her angel kiss! (and she's taking a snooze in the photo if you can't tell...) :)



I could go on and on (and probably will some other time) but this post is already long enough and I need to get going...

"Thank you for all of the unique and wonderful things about Hailey Lord!"

Now I Lay Me Down To Sleep Photos

These pictures were taken by an organization called "Now I Lay Me Down to Sleep" while Josh and I were in the hospital with Hailey.

Now I Lay Me Down To Sleep Photos

These pictures were taken by an organization called "Now I Lay Me Down to Sleep" while Josh and I were in the hospital with Hailey.

Yet I still dare to hope...

Some of the most comforting scripture I have come across. It brings me great comfort and I hope you may find comfort if you're reading this.

Lamentations 3:21-33 (New Living Translation) - Thank you Karen and your MIL for sharing these verses with me.

21 Yet I still dare to hope
when I remember this:

22 The faithful love of the Lord never ends![a]
His mercies never cease.
23 Great is his faithfulness;
his mercies begin afresh each morning.
24 I say to myself, “The Lord is my inheritance;
therefore, I will hope in him!”

25 The Lord is good to those who depend on him,
to those who search for him.
26 So it is good to wait quietly
for salvation from the Lord.
27 And it is good for people to submit at an early age
to the yoke of his discipline:

28 Let them sit alone in silence
beneath the Lord’s demands.
29 Let them lie face down in the dust,
for there may be hope at last.
30 Let them turn the other cheek to those who strike them
and accept the insults of their enemies.

31 For no one is abandoned
by the Lord forever.
32 Though he brings grief, he also shows compassion
because of the greatness of his unfailing love.
33 For he does not enjoy hurting people
or causing them sorrow.

Yet I still dare to hope...

Some of the most comforting scripture I have come across. It brings me great comfort and I hope you may find comfort if you're reading this.

Lamentations 3:21-33 (New Living Translation) - Thank you Karen and your MIL for sharing these verses with me.

21 Yet I still dare to hope
when I remember this:

22 The faithful love of the Lord never ends![a]
His mercies never cease.
23 Great is his faithfulness;
his mercies begin afresh each morning.
24 I say to myself, “The Lord is my inheritance;
therefore, I will hope in him!”

25 The Lord is good to those who depend on him,
to those who search for him.
26 So it is good to wait quietly
for salvation from the Lord.
27 And it is good for people to submit at an early age
to the yoke of his discipline:

28 Let them sit alone in silence
beneath the Lord’s demands.
29 Let them lie face down in the dust,
for there may be hope at last.
30 Let them turn the other cheek to those who strike them
and accept the insults of their enemies.

31 For no one is abandoned
by the Lord forever.
32 Though he brings grief, he also shows compassion
because of the greatness of his unfailing love.
33 For he does not enjoy hurting people
or causing them sorrow.

Empty House, Empty Heart

Josh and I left IL at 4am Monday to drive back to our home in AL. It was the drive that I had been dreading since we arrived in IL to bury our little Hailey. For one, I had to say goodbye to my dad who is dying from cancer and only has a week or so left, but I had to deal with coming home to an empty house, to a house without my daughter.

I knew it was going to be difficult to be back in the house where we had spent about a month with Hailey. On the day Hailey passed away, after the hospice nurse had carried her little body out of the house and into the car and before we left for IL, Josh and I slowly and sadly moved all of Hailey's belongings into her room. (I knew that when I came back that if I saw her crib by our bed or her bottles in the kitchen cabinet or her little bed that we kept in the living room...that it would be too much for me - and it was the right decision in looking back). But I really had no idea how hard it would be...

The house was so cold and empty when we walked inside. Josh had gone in with Opie before me...and he told me that Opie was going around the entire house looking and sniffing for Hailey. My heart broke. Josh told me that Opie laid down outside her bedroom door and whined for her. My heart broke again. Tears began to well up in my eyes. I had not remembered how bare our house was before we had Hailey. I was in the house alone as Josh unpacked the car. I looked around. Her pink bed was not on the coffee table, the pink organizer we kept her diapers and supplies in was not on the end table, her crib was not next to our bed, there was almost no sign of Hailey ever having been there. The emptiness overwhelmed me, and I immediately began weeping. I walked around the house - in and out of every room like I was looking for a sign of her. There were the pink roses our friend had brought us on the day she passed away still on the kitchen table and there was the sign I had made her on her 5 week birthday...more weeping. I just kept thinking she should be here... she should be here... I guess Opie and I did the same thing when we came home...

Then, I went into Hailey's room...that wasn't as bad as I thought it would be...it was actually comforting to see "her" again. The first thing I did was go to her hamper - that had one blanket and one onesie she had worn. I held her blanket to my nose and breathed in... a little piece of Hailey... her smell...what comfort to have again... But I know it won't last...

Our mail was laid out on our kitchen table and there was a stack of sympathy cards that awaited us. I sat down and opened and read the cards...another comfort to know and read about how many people are thinking of us and Hailey and to know people are praying for us. And in all of the mail on the table was an envelope that contained the CD of photos "Now I Lay Me Down to Sleep" had taken of Josh, Hailey, and me during our stay in the hospital. Another comfort - new photos of Hailey...and they were beautiful...

So as Josh and I unpacked and got ourselves settled back into our house, the ache and emptiness in my heart was unbelievably overwhelming and tears continued to flow...I longed for my baby girl...I longed to hold her in my arms again and rock her and feed her in the glider that had been in our bedroom...but I was home without her... and my tears came and went all night until I fell asleep...

The immediate rush of grief I felt when I walked into our house could not have been anticipated. Neither could the momentary sources of comfort that I found. And in the end, I had to remember and find comfort in the fact that Hailey is in a better place where she doesn't suffer from any of the effects of Trisomy 18 and where she is perfectly at peace and joyful. She is in a better place... I just can't wait to be with her again...

...and today was a better day...

Empty House, Empty Heart

Josh and I left IL at 4am Monday to drive back to our home in AL. It was the drive that I had been dreading since we arrived in IL to bury our little Hailey. For one, I had to say goodbye to my dad who is dying from cancer and only has a week or so left, but I had to deal with coming home to an empty house, to a house without my daughter.

I knew it was going to be difficult to be back in the house where we had spent about a month with Hailey. On the day Hailey passed away, after the hospice nurse had carried her little body out of the house and into the car and before we left for IL, Josh and I slowly and sadly moved all of Hailey's belongings into her room. (I knew that when I came back that if I saw her crib by our bed or her bottles in the kitchen cabinet or her little bed that we kept in the living room...that it would be too much for me - and it was the right decision in looking back). But I really had no idea how hard it would be...

The house was so cold and empty when we walked inside. Josh had gone in with Opie before me...and he told me that Opie was going around the entire house looking and sniffing for Hailey. My heart broke. Josh told me that Opie laid down outside her bedroom door and whined for her. My heart broke again. Tears began to well up in my eyes. I had not remembered how bare our house was before we had Hailey. I was in the house alone as Josh unpacked the car. I looked around. Her pink bed was not on the coffee table, the pink organizer we kept her diapers and supplies in was not on the end table, her crib was not next to our bed, there was almost no sign of Hailey ever having been there. The emptiness overwhelmed me, and I immediately began weeping. I walked around the house - in and out of every room like I was looking for a sign of her. There were the pink roses our friend had brought us on the day she passed away still on the kitchen table and there was the sign I had made her on her 5 week birthday...more weeping. I just kept thinking she should be here... she should be here... I guess Opie and I did the same thing when we came home...

Then, I went into Hailey's room...that wasn't as bad as I thought it would be...it was actually comforting to see "her" again. The first thing I did was go to her hamper - that had one blanket and one onesie she had worn. I held her blanket to my nose and breathed in... a little piece of Hailey... her smell...what comfort to have again... But I know it won't last...

Our mail was laid out on our kitchen table and there was a stack of sympathy cards that awaited us. I sat down and opened and read the cards...another comfort to know and read about how many people are thinking of us and Hailey and to know people are praying for us. And in all of the mail on the table was an envelope that contained the CD of photos "Now I Lay Me Down to Sleep" had taken of Josh, Hailey, and me during our stay in the hospital. Another comfort - new photos of Hailey...and they were beautiful...

So as Josh and I unpacked and got ourselves settled back into our house, the ache and emptiness in my heart was unbelievably overwhelming and tears continued to flow...I longed for my baby girl...I longed to hold her in my arms again and rock her and feed her in the glider that had been in our bedroom...but I was home without her... and my tears came and went all night until I fell asleep...

The immediate rush of grief I felt when I walked into our house could not have been anticipated. Neither could the momentary sources of comfort that I found. And in the end, I had to remember and find comfort in the fact that Hailey is in a better place where she doesn't suffer from any of the effects of Trisomy 18 and where she is perfectly at peace and joyful. She is in a better place... I just can't wait to be with her again...

...and today was a better day...

The Loss of a Child

I'm amazed to find out how many women (couples) have lost a baby. It really is like some "secret" or "taboo." I bet if you're reading this there are several other people in your life who have lost a child and you might not even know about it - a relative, a co-worker, a neighbor. Before I lost Hailey I didn't know anyone who had lost a baby from anything, but since I've lost Hailey 5 people I know (some whom I have known for my most of my life) have come forward and shared a little bit of their story of loss with me.

Josh and I aren't close to any of our neighbors here in AL, but we do the occasional casual conversations and the waves, etc. Well today out of the blue one of our neighbors (an army wife) appeared on our doorstep with her two little kids. To keep it simple, I'll just say she cautiously and nervously managed to ask us if we had lost our baby and apologized for not knowing and not being able to do anything to help us. So I told her all about our little Hailey and how she was born with Trisomy 18. She told us that she doesn't usually tell people or talk about it, but she lost a baby also. I asked if she minded telling us how old her baby was when she lost it. She said he died at birth. Her eyes were welling up with tears and I could tell how hard it was for her to come to our door step, so I didn't pry any further. I don't know how he died or what his name was or how long ago it was... But I appreciated her sharing her story with me and caring enough to come to our doorstep - it had to have taken a lot of courage.

It surprises me that many mothers don't talk about their babies who they've lost - but I think it's just because my perspective is different from theirs and everyone handles loss differently. I just have to say that I am not like that - obviously you probably know that since you're reading my blog. I love talking about Hailey - I think I've mentioned that once or twice before. :) I absolutely love talking about her - not just the fuzzy, warm memories of her, but I will talk about Trisomy 18 and any difficulties she/ we had... because it all makes up Hailey's story. And like I've said before, I want the world to know her. I respect mothers who don't wish to talk about their baby if they lost him/her, but as the same time, I wish they would...

I should also mention (forgive me if I've already mentioned this in a prior post - my mind is mush these days) that there is another army couple in our town who lost their son from Trisomy 18 - I believe their son lived to be a few months old. We might be getting in contact with them at some point.

Anyway, Hailey's grandma was given an article from someone at our church in IL about a couple whose daughter only lived for 2 and 1/2 hrs. The article contains a section about how to help someone who has lost a child and thought I would share the advice that the article shared because I think it's perfect! This is the paraphrased version from The Thriving Family, Jan.-Feb. 2010 edition, the article is titled "Hours with Audrey: Celebrating Life in the Shadow of Death" by Pam Woody:

-Be available - help, pray, do whatever they need
-Be a good listener - sit in silence, weep with those who weep
-Allow them to be honest - even if their thoughts/ feelings aren't "theologically accurate" don't jump to criticizing them
-Send letters, cards, and e-mails - acknowledge significant birthdays and anniversaries
-Don't avoid asking them how they are doing
-Talk about the baby by name - "you can take cues to continue talking or change the subject according to the response of the grieving parent"

The Loss of a Child

I'm amazed to find out how many women (couples) have lost a baby. It really is like some "secret" or "taboo." I bet if you're reading this there are several other people in your life who have lost a child and you might not even know about it - a relative, a co-worker, a neighbor. Before I lost Hailey I didn't know anyone who had lost a baby from anything, but since I've lost Hailey 5 people I know (some whom I have known for my most of my life) have come forward and shared a little bit of their story of loss with me.

Josh and I aren't close to any of our neighbors here in AL, but we do the occasional casual conversations and the waves, etc. Well today out of the blue one of our neighbors (an army wife) appeared on our doorstep with her two little kids. To keep it simple, I'll just say she cautiously and nervously managed to ask us if we had lost our baby and apologized for not knowing and not being able to do anything to help us. So I told her all about our little Hailey and how she was born with Trisomy 18. She told us that she doesn't usually tell people or talk about it, but she lost a baby also. I asked if she minded telling us how old her baby was when she lost it. She said he died at birth. Her eyes were welling up with tears and I could tell how hard it was for her to come to our door step, so I didn't pry any further. I don't know how he died or what his name was or how long ago it was... But I appreciated her sharing her story with me and caring enough to come to our doorstep - it had to have taken a lot of courage.

It surprises me that many mothers don't talk about their babies who they've lost - but I think it's just because my perspective is different from theirs and everyone handles loss differently. I just have to say that I am not like that - obviously you probably know that since you're reading my blog. I love talking about Hailey - I think I've mentioned that once or twice before. :) I absolutely love talking about her - not just the fuzzy, warm memories of her, but I will talk about Trisomy 18 and any difficulties she/ we had... because it all makes up Hailey's story. And like I've said before, I want the world to know her. I respect mothers who don't wish to talk about their baby if they lost him/her, but as the same time, I wish they would...

I should also mention (forgive me if I've already mentioned this in a prior post - my mind is mush these days) that there is another army couple in our town who lost their son from Trisomy 18 - I believe their son lived to be a few months old. We might be getting in contact with them at some point.

Anyway, Hailey's grandma was given an article from someone at our church in IL about a couple whose daughter only lived for 2 and 1/2 hrs. The article contains a section about how to help someone who has lost a child and thought I would share the advice that the article shared because I think it's perfect! This is the paraphrased version from The Thriving Family, Jan.-Feb. 2010 edition, the article is titled "Hours with Audrey: Celebrating Life in the Shadow of Death" by Pam Woody:

-Be available - help, pray, do whatever they need
-Be a good listener - sit in silence, weep with those who weep
-Allow them to be honest - even if their thoughts/ feelings aren't "theologically accurate" don't jump to criticizing them
-Send letters, cards, and e-mails - acknowledge significant birthdays and anniversaries
-Don't avoid asking them how they are doing
-Talk about the baby by name - "you can take cues to continue talking or change the subject according to the response of the grieving parent"

"this is not how it should be"

Today was a bittersweet day in some respects. My husband and I spent the evening with my family -my mom, brother, sister-in-law, and nephew. We barely get to spend time with them since we live in Alabama so it's really a treat for me when we can all get together. I also love seeing my nephew who is getting so big! He's a year and a couple of months now so every time I see him he's grown bigger and has learned how to do more things. For instance, the last time I saw him he was a wobbly walker, but now he's running all over the place. It's incredible!

Being around babies and young children are hard for me right now, so I knew that tonight could be difficult. I had a great time while we were there, but in the car on the way back to Josh's parent's house tears suddenly welled up in my eyes. It was like they had been hiding and couldn't wait any longer to come out. It kind of took Josh back when he heard me quietly crying as we drove - he didn't know what was wrong because minutes earlier I had been smiling and laughing.

I was able to run from my true feelings the entire time we were with my family, but I couldn't outrun them any more. The hole in my heart felt enormous. I missed my daughter. My heart ached...and the tears poured out.

All I could think was that Hailey should have been there. Hailey should have been with us. Hailey should have been able to meet her cousin. I should have been taking care of Hailey like my sister-in-law and brother were taking care of their son. Hailey should have been there...

And that's when I get back to the issue that bothers me which is how I'm afraid of the moments where it's like she never existed. She wasn't there. It's like she was never even born...

We had Hailey buried in IL because that's where we call home even though we live in AL and that's where all of our family lives. I hate that when we brought Hailey "home" we brought her home to IL in a casket...not a carseat...and I can't even write this right now without crying. She never got to come home to Josh's parent's home or my mom's house. She never was held by one of her aunts and many other relatives and friends. The first time they met her was when she was in her casket at the funeral chapel. And it absolutely breaks my heart.

I keep thinking this isn't how it's supposed to be. We weren't supposed to come home to bury our daughter. We were supposed to come to IL to celebrate Christmas with our newborn daughter and our families....it wasn't supposed to be this way.

So tonight... the hole in my heart feels incredibly large...and words can't express how badly I miss Hailey...

But I know...that this is how it's supposed to be - even if I don't like it...and I'll end with these lyrics by Steven Curtis Chapman:

"This is not how it should be
This is not how it could be
But this is how it is
And our God is in control"

...oh and one more thing I want to add... one of my friends (you know who you are) told me yesterday how she admired me for my faith and trust in God and how she can't imagine what this is like and how I do it... and I told her this: It's like my life is the footprints in sand poem - I literally feel like I have collapsed and God has picked me up and is carrying me each and every day. The only way I'm getting through any day, hour, or minute, is not me - God is literally carrying me and I have no other choice than to turn to Him and let Him carry me - I wouldn't survive otherwise.

So tonight will probably be a tough night with many tears involved, but God starts to fill the huge gaping hole in my heart when I talk to him at night... and I'll let the world in on a little part of the conversation I have with Him. First, I imagine Hailey doing incredible things in Heaven in her perfect healthy body - having so much fun doing things I can't even imagine. I imagine Hailey happy and in complete peace with her Heavenly Father. Then I say to Jesus, "Give her a hug from me, hold her tightly in Your arms for me, and cover her in kisses from her mommy"...I love you my little munchkin...

"this is not how it should be"

Today was a bittersweet day in some respects. My husband and I spent the evening with my family -my mom, brother, sister-in-law, and nephew. We barely get to spend time with them since we live in Alabama so it's really a treat for me when we can all get together. I also love seeing my nephew who is getting so big! He's a year and a couple of months now so every time I see him he's grown bigger and has learned how to do more things. For instance, the last time I saw him he was a wobbly walker, but now he's running all over the place. It's incredible!

Being around babies and young children are hard for me right now, so I knew that tonight could be difficult. I had a great time while we were there, but in the car on the way back to Josh's parent's house tears suddenly welled up in my eyes. It was like they had been hiding and couldn't wait any longer to come out. It kind of took Josh back when he heard me quietly crying as we drove - he didn't know what was wrong because minutes earlier I had been smiling and laughing.

I was able to run from my true feelings the entire time we were with my family, but I couldn't outrun them any more. The hole in my heart felt enormous. I missed my daughter. My heart ached...and the tears poured out.

All I could think was that Hailey should have been there. Hailey should have been with us. Hailey should have been able to meet her cousin. I should have been taking care of Hailey like my sister-in-law and brother were taking care of their son. Hailey should have been there...

And that's when I get back to the issue that bothers me which is how I'm afraid of the moments where it's like she never existed. She wasn't there. It's like she was never even born...

We had Hailey buried in IL because that's where we call home even though we live in AL and that's where all of our family lives. I hate that when we brought Hailey "home" we brought her home to IL in a casket...not a carseat...and I can't even write this right now without crying. She never got to come home to Josh's parent's home or my mom's house. She never was held by one of her aunts and many other relatives and friends. The first time they met her was when she was in her casket at the funeral chapel. And it absolutely breaks my heart.

I keep thinking this isn't how it's supposed to be. We weren't supposed to come home to bury our daughter. We were supposed to come to IL to celebrate Christmas with our newborn daughter and our families....it wasn't supposed to be this way.

So tonight... the hole in my heart feels incredibly large...and words can't express how badly I miss Hailey...

But I know...that this is how it's supposed to be - even if I don't like it...and I'll end with these lyrics by Steven Curtis Chapman:

"This is not how it should be
This is not how it could be
But this is how it is
And our God is in control"

...oh and one more thing I want to add... one of my friends (you know who you are) told me yesterday how she admired me for my faith and trust in God and how she can't imagine what this is like and how I do it... and I told her this: It's like my life is the footprints in sand poem - I literally feel like I have collapsed and God has picked me up and is carrying me each and every day. The only way I'm getting through any day, hour, or minute, is not me - God is literally carrying me and I have no other choice than to turn to Him and let Him carry me - I wouldn't survive otherwise.

So tonight will probably be a tough night with many tears involved, but God starts to fill the huge gaping hole in my heart when I talk to him at night... and I'll let the world in on a little part of the conversation I have with Him. First, I imagine Hailey doing incredible things in Heaven in her perfect healthy body - having so much fun doing things I can't even imagine. I imagine Hailey happy and in complete peace with her Heavenly Father. Then I say to Jesus, "Give her a hug from me, hold her tightly in Your arms for me, and cover her in kisses from her mommy"...I love you my little munchkin...

Today's posts...

So today's blog posts weren't very "upbeat" I know... but I needed to get those thoughts out to help me deal with them and get back to the more "upbeat" things I have to share.

Today's been kind of a rough day - feeling emotionally overwhelmed as I think of Hailey and mourn for her and as I deal with things surrounding my father who is dying from cancer... so this is where I'm at. Not very "upbeat" today.

I'll wrap up today's posts with these lyrics by Steven Curtis Chapman... they clearly express where I'm at today... I'm clinging to You, God.

"I am broken, I am bleeding
I'm scared and I'm confused
But You are faithful, yes,
You are faithful
I am weary and believing
God please help my unbelief
Cause You are faithful, yes,
You are faithful...
And with everything inside of me
I am choosing to believe
You are faithful..."

Today's posts...

So today's blog posts weren't very "upbeat" I know... but I needed to get those thoughts out to help me deal with them and get back to the more "upbeat" things I have to share.

Today's been kind of a rough day - feeling emotionally overwhelmed as I think of Hailey and mourn for her and as I deal with things surrounding my father who is dying from cancer... so this is where I'm at. Not very "upbeat" today.

I'll wrap up today's posts with these lyrics by Steven Curtis Chapman... they clearly express where I'm at today... I'm clinging to You, God.

"I am broken, I am bleeding
I'm scared and I'm confused
But You are faithful, yes,
You are faithful
I am weary and believing
God please help my unbelief
Cause You are faithful, yes,
You are faithful...
And with everything inside of me
I am choosing to believe
You are faithful..."

Awkward (?) moments

It's funny how shocked people are when they find out we lost a daughter - well I know "funny" isn't the right word, but you know what I mean...

My first story to share - the day Hailey passed away we left AL to drive back to IL. Before we left I stopped at a store to buy an outfit for her memorial service. I was in the store (looking terrible, no make up, glasses, sweats, and I had been crying for hours), and I, of course, was carrying around black clothing items to try on. The first thing a salesperson says to me - "Are you shopping for a school uniform?" Seriously lady?? You could tell by looking at me that I had been crying and wasn't very happy, and I'm carrying black clothing - and she thinks school uniform?? I'm sure some of it stems from the fact that I look young - but I'm almost 25 - do I really still look like I'm in high school? But it was an honest mistake I know. It just shows that no one expects me to be a mother and no one expects that I'm a mother whose daughter passed away.

Second story to share - at the store where Josh and I bought our lockets to keep Hailey's picture in the salesperson asked us what occasion we were shopping for... this gets kind of awkward... and Josh kindly explains to her that our daughter passed away...the look on her face was perhaps a mixture of shock, disbelief, and sadness...she kind of gasped quietly and said the usual "I'm so sorry" etc.

And we have more stories like this, and I'm sure we'll continue to have more stories like this... and I can understand it. People don't really expect such a young couple to have had a daughter (especially when I look like I'm still in high school I guess) and to have lost her already...

And this is what bothers me sometimes. I want to tell the world about my daughter, I want the world to know I'm a mom and that Josh is a dad, I want the world to know we're not just a married couple anymore we're a family - it's just that one member of our family is not with us anymore... I don't want it to be where everyone we meet just assumes we're a young married couple that hasn't decided to have kids yet...I don't want it to be awkward when we tell them we had a daughter, but she passed away... But what stranger would know that I'm the mother of a child in heaven? ...I can't blame anyone or expect it to be any different I know...

Awkward (?) moments

It's funny how shocked people are when they find out we lost a daughter - well I know "funny" isn't the right word, but you know what I mean...

My first story to share - the day Hailey passed away we left AL to drive back to IL. Before we left I stopped at a store to buy an outfit for her memorial service. I was in the store (looking terrible, no make up, glasses, sweats, and I had been crying for hours), and I, of course, was carrying around black clothing items to try on. The first thing a salesperson says to me - "Are you shopping for a school uniform?" Seriously lady?? You could tell by looking at me that I had been crying and wasn't very happy, and I'm carrying black clothing - and she thinks school uniform?? I'm sure some of it stems from the fact that I look young - but I'm almost 25 - do I really still look like I'm in high school? But it was an honest mistake I know. It just shows that no one expects me to be a mother and no one expects that I'm a mother whose daughter passed away.

Second story to share - at the store where Josh and I bought our lockets to keep Hailey's picture in the salesperson asked us what occasion we were shopping for... this gets kind of awkward... and Josh kindly explains to her that our daughter passed away...the look on her face was perhaps a mixture of shock, disbelief, and sadness...she kind of gasped quietly and said the usual "I'm so sorry" etc.

And we have more stories like this, and I'm sure we'll continue to have more stories like this... and I can understand it. People don't really expect such a young couple to have had a daughter (especially when I look like I'm still in high school I guess) and to have lost her already...

And this is what bothers me sometimes. I want to tell the world about my daughter, I want the world to know I'm a mom and that Josh is a dad, I want the world to know we're not just a married couple anymore we're a family - it's just that one member of our family is not with us anymore... I don't want it to be where everyone we meet just assumes we're a young married couple that hasn't decided to have kids yet...I don't want it to be awkward when we tell them we had a daughter, but she passed away... But what stranger would know that I'm the mother of a child in heaven? ...I can't blame anyone or expect it to be any different I know...

Struggling with selfishness

Yesterday Josh and I had a busy day. We spent the day with our dog, Opie, visiting two of my bestest friends. We spent the day at my one friend's house just chatting and hanging out while Opie played with her dogs. Then we went out to dinner with my other friend. After dinner Josh and I went shopping at a mall, just the two of us. We went so that we could each buy a locket (to put Hailey's picture in of course) and have it engraved with her name - something so that we could each feel like she was still with us... something else to help us remember her and so that other people know she is still a part of our life...

It was the first day since Hailey passed away* (correction from the first version I posted) that I had a really good day. I laughed and smiled more than I had in a very long time. It felt good. And the hole in my heart didn't feel so big yesterday. It was nice...

But at the same time, it wasn't. I'm now able to do all of the things I couldn't do when I had Hailey - and many of the things I couldn't do when I was pregnant. A part of my mind tells me I shouldn't be out shopping all night with my husband, I should be at home taking care of my baby girl. I shouldn't be able to go to the movies, I should be at home taking care of my baby girl...

I'm able to get lost in a book for hours at a time now that Hailey's gone - something I had longed to do when I had her. I'm able to go wherever I want whenever I want - something I had longed to do when I had Hailey. I HATE that I wanted to do so many things when I had Hailey. Why couldn't spending time with her be enough? But no. I had Hailey, and I longed to do the things I could pre-pregnancy, pre-Hailey...

I was selfish. And now, as I'm doing these "fun" things, a part of my mind - the not so good part I know - cruelly tells me - "You got what you wanted. Are you happy?" The same dark part of my mind tells me Hailey died because of my selfishness - like it was God saying, "you really wanted those things, well now you have them - how does it feel?"

When I step back and become logical again - I know those thoughts are not true and not from God... but I have to be honest, I still have them. And I know that getting out of the house and having fun is not a selfish thing right now - it's actually good for me. But I still feel selfish sometimes...

Forgetting...Remembering...

If you ask me what my biggest fear is right now, I would say it is forgetting Hailey. She was with us for such a brief amount of time... only 36 days...gone so fast... I feel like I barely had time to make memories to remember.

Only a day after Hailey passed away I felt like my mind went blank when I was trying to remember her. Crying, I remember telling Josh I can't remember her, I can't remember what she looks like, I can't remember what she smells like...It was like a panic attack.

Thankfully that moment passed, and I can still remember her - although it's like all of the memories are kind of foggy. Sometimes God blesses me with incredibly clear, vivid memories of her - sight, smell, sound - everything. But my biggest fear is forgetting. I'm thankful I have pictures to remember what Hailey looked like - but really, her pictures don't do her justice...the videos of her do help somewhat.

Right now I can remember the feeling of the baby soft hair and skin on her head - even her soft spot... love it...

But one of the things I loved the most about Hailey was her smell. I loved her smell. This is one of the things I fear forgetting the most because how can you remember a smell? When she was still with us, I would hold her in my arms as she slept swaddled tightly in her blankie, and I would put my face in the space right between her cheek and her blanket and just breathe in and out... I honestly could breathe her in forever....That memory is really hard to hold on to. We don't have her clothes or blankets here in IL since they're all back at home in AL - otherwise I'm sure I would turn to those to remember her smell.

But last night, just when I was having trouble remembering and I was starting to forget, Josh gave me her giraffey (we brought it with us and kept it). And I held it close to me and breathed it in...and well let's just say the link between smell and memory is ridiculous! Her giraffe had her smell...her wonderful unique baby smell...and in smelling that completely unexpected smell it was like I had a little part of Hailey back again. It was a little piece of Heaven on earth for me.

Tonight when Josh and I walked into his parents' house after being gone for over eight hours, the smell of flowers (from the memorial service) filled my nose and it was almost overwhelming how it hit me and took me by surprise (especially considering I'd been smelling the flowers all week!) and how it reminded me of Hailey. We were given flowers very similar to the ones Josh had bought Hailey on her 1 week birthday. Those flowers were so fragrant and filled the tiny little hospital room we were in so much that I swear it is where Hailey got her flowery baby smell from. So smelling the flowers from the memorial service at his parents' house instantly brought me back to those days in the hospital with Hailey...almost like she was here again...

Slide show tribute to Hailey

This is the slide show Josh created for Hailey's memorial service - pictures of her set to the song "Heaven is the Face."

My journey of expansion...

I've started following the blogs of Eliot's parents (99 balloons...)... I love this part of what Ginny, Eliot's mom, wrote when they started the new blog about life after Eliot - oh how I can relate to this!!!! Her words become my words...

"i spent 3 months & 10 days staring at the cutest "not normal" there ever was.
he left us for the much better 15 months ago. in his absence, my husband & i live with a constant ache in our hearts of missing him. this blog is about my learning to live with that ache.

an author named jerry sittser talks about how loss & saddness actually expand the soul. this is my journey of expansion."

Time is a funny thing...

One week ago today Josh and I awoke to find that our baby girl had passed away... The thing we had been dreading had happened. So today is a hard day...

Time is a funny thing. During the 9 months I was pregnant with Hailey, time seemed to crawl at a snail's pace. I couldn't wait to be done being pregnant and hold my little girl in my arms. Hailey's birth couldn't come soon enough.

And then all of a sudden, the 9 months were over and Hailey was here. Instead of seeming like it took forever for her to get here - it seemed like time went by too quickly. During the first week of Hailey's life when we spent it in the NICU and a private room at the hospital and we knew she was fighting against time - because it was only a matter of time before she'd be gone - time was so precious and fragile. I was desperate to hold on to every second.

Then Hailey became better and better, and it seemed like maybe we'd be one of the few lucky parents of a Trisomy 18 baby who would get to spend months - maybe even a year with her. I loved the good days with Hailey - when she seemed like a "normal" baby - but I hated those days at the same time. It seemed like a false hope those days, and I had to remind myself she could pass at any moment even if it seemed she was doing well.

When we were first learning of Hailey's condition, we asked the doctors what would be the cause of her death. They told us it would be either apnea (when she forgets to breathe) or the result of an infection - it would be too much for her little body to handle. We asked how long she'd have with us if she got an infection, and the doctors told us that she would likely pass within 24 hrs.

Well, on January 5, 2010, we noticed something slightly amiss when we were tube feeding her. We called the pediatrician and brought Hailey in. The doctor informed us that Hailey was fine, but she did have a fever of 100.2. The fever would just have to run its course. To this day I can't believe I didn't put all the pieces together so to speak. I thought that Hailey would be fine - she was doing so good - not even acting different or sick or anything - she was actually the most successful with feeding from the bottle that day! I really thought the fever would be gone within a day...

But in retro spec I ask myself how did I not know? The fever was likely the result of some type of infection that she had - the doctor told us that. The other doctors told us that if she got an infection that she would have less than 24 hrs. How did I not know it was her time? Well I didn't... and it was. She passed away the next morning.

The entire time we had Hailey I knew she could go at any minute - and yet I treated those final hours of Hailey's life like she was a "normal" healthy baby who could fight off an infection...

When the realization that Hailey was gone set in that day, it was like the last 35 days were gone in the blink of an eye. She was gone already? I tried to treasure each day and each moment and make it last and last and stretch time out... but in the end, I couldn't hold on to time or slow it down like I wanted.

And now, time is a funny thing. Some days this week time has once again crawled to a snail's pace, and I just want to speed it up and get through with the day. But then today, 1 week since she passed, time seems to have passed too quickly. Can it already be a week? It feels like she passed away just yesterday - not a week ago.

Time really does move on - whether you're ready for it or not...Oh how I've longed to just pause time. I think of how many times I had Hailey in my arms, cuddling her, holding her, breathing her in, memorizing her face, and just being desperate to pause time and live in that moment forever... but I couldn't.

It seems like time speeds up when you don't want it to and then it's gone before you know it. And when you want time to speed up and pass quickly, it seems like it inches along...

So anyway, today, on the 1 week anniversary of Hailey going to Heaven, I will remember the time we spent with her - and thank God for the pictures and video we have of her as we tried to capture each moment, each memory and freeze time...

Really God?

God has really been speaking to me lately through my online devotional "Girlfriends in God." Today's truth: Philippians 4:4 "Rejoice in the Lord always. I will say it again: Rejoice!" How interesting of a truth to be shared with me right now. Exactly a week after Hailey's passing and after learning that my dad is really sick. Rejoice when it seems like my life is being ripped apart? When it seems like the people I love the most are suffering or being taken from me? Rejoice God?? What timing for me to be reminded of this Biblical truth. But what timing it is! God is perfect in his ways and his timing. And while one may wonder how can I possibly praise God and rejoice in Him at a time like this... well God knows that's exactly what I need to do.

So today will be a day of mourning Hailey - but I will listen to what God needs me to hear - and today will be a day rejoicing. What could I possibly rejoice over? I will rejoice in the 39 weeks Hailey spent in my womb and the 36 AMAZING days God gave me on Earth to spend with Hailey. I will rejoice in God's perfection and love and peace and his sovereignty.

Letting go and holding on...

So I just uploaded the last pictures I took of Hailey to facebook...(sigh)...that was hard. They were taken January 5, 2010 on her 5 week birthday, which was also the day before she passed away.

As the number of days increase from when she passed away, the harder it seems to get. I have less and less to do that involves her, and I have to try to transition back to "normal" life - whatever that is...but I know that it doesn't include her anymore. :( That's one of the reasons this blog is so helpful to me - because it's kind of like the one thing I can hold onto that has to do with her.

I know that when people in my life have lost loved ones - like my grandma losing my grandpa or my friend losing her dad, etc. - that I've been afraid to bring up the person they lost to them because I don't want to make them sad. I know that many people feel afraid to broach the subject of someone who has passed away because they don't want to make anyone's grief come back, etc. But for me on the other side now, I LOVE talking about Hailey. My fear is not that someone will bring her up and make me sad, my fear is that no one will bring her up and I'll never get to talk about her again...

So by all means, if you're reading this and want to talk to me about Hailey, please DO! I really can't say it enough - I LOVE talking about her and remembering her...

Not to us, but to Your Name... (Facebook Note)

While Hailey's memorial service was beautiful, there is one thing that has been bugging me about it - and just one thing I want to make clear with all of the comments we keep getting from people...

Many people have told us how impressed they are by how we're handling Hailey's death and how strong and mature we are, etc. And the thing that is bothering me from Hailey's service was when the funeral director had everyone there applaud us for our strength, etc. I really felt that was inappropriate to be honest.

I am glad people are seeing our strength during this difficult time, but I need to make something clear...
all of the joy and hope and strength we have is supernatural - God-given. So it's like the Chris Tomlin song "Not to Us" : "Not to us, but to Your Name be the glory."

So I appreciate everyone's comments praising us for our strength, etc. and I truly appreciate that - but really it's not us - this is all a God thing. We are weak and grieve and are sad. But God has given us strength and hope and joy and everything we need to get through this.

There are several Biblical truths that I am seeing played out in my life that speak to this issue:
2 Cor. 12:9 "But He said to me, "My grace is sufficient for you, for My power is made perfect in weakness." God is definitely displaying His power in our weakness right now...

and..."Now all glory to God, who is able, through His mighty power at work within us, to accomplish infinitely more than we might ask or think". Ephesians 3:20

God is accomplishing more in us and Hailey more than we EVER could have imagined.
So don't praise us - PRAISE GOD and give the glory to God!

And keep praying for us because we need prayers and God to get us through this.

Hailey's Story

If you are someone who just came across my blog or just started following Hailey, I will quickly share her story - if you want more information you can read the facebook notes I posted below - and if you already have read the facebook notes this next section will probably be repetitive for you.

My husband and I are 24 years old and had been married for a year and half at the time Hailey was conceived. We started trying, or "not trying not to have a baby," in January 2009. We found out at the end of March that we were pregnant. We were so excited! At this time Josh was living in Georgia for BOLC II and I was finishing out the year teaching in Illinois. Therefore, I had to go to my doctor's appointments alone. At one of the early doctor's appointments I had a multiple marker screening done - I really had no clue about screenings and in retro spec wish I had never done that first screening. I was surprised to hear my doctor tell me that the ultrasound for the screening came back positive as showing something potentially wrong with my baby. The ultrasound showed that Hailey had some more fluid than normal in the back of her head. Alone, this did not mean that Hailey had a genetic disorder (which is what the screening detects) but it meant that the chances she had one were greater than normal. To further determine the chance of Hailey having a genetic disorder the doctor had blood tests done. The bloodwork wasvdone the same day the ultrasound was done, but I had to wait a few days for the results to come back.

The doctor told me that if the results came back normal, then Hailey was fine. If the bloodwork came back positive, then that combined with the ultrasound suggested Hailey had a genetic disorder. The doctor asked me what I would do if both the ultrasound and bloodwork suggested that the baby had a genetic disorder - would I keep the baby or would I terminate the pregnancy? I remember thinking to myself, did she really just ask me if I would "terminate" the pregnancy or have an abortion? But she did...This was the last conversation I expected having at what I thought was a routine doctor's visit. She explained that even if everything came back positive, there was really no way of knowing Hailey had a genetic disorder unless I did an amniocentesis, which runs the risk of a spontaneous abortion.

Because of my beliefs and faith, I told the doctor that no matter what happened I would keep my baby. I also would not have an amnio because of the risks associated with it. It didn't matter what that showed anyway because I really didn't care about knowing if I was going to keep my baby no matter what and there's nothing that they could have done to "treat" or "cure" a genetic disorder anyway...

I left the office terrified and worried. I had to call Josh and tell him that our baby might have a genetic disorder like Down's Syndrome or something...that was one of the hardest phone calls I've ever made, and being so far away from him was very difficult - for both of us. Days past and I never heard back from the doctor's office. A week later I called to ask about the results of my bloodwork - they told me that if I hadn't received a call that meant that the bloodwork came back normal and there was nothing to worry about, but I wanted them to check just to make sure. The nurse confirmed that my bloodwork came back normal. So since the ultrasound was positive and the bloodwork was negative, the entire screening was negative. Therefore, I was told that the chances of Hailey having a genetic disorder were very low, and she should be a healthy baby.

So the rest of the pregnancy continued as normal and everything looked good. I felt confident that we would have a healthy baby especially because we ourselves were so young and healthy, but in the back of my mind was always the thought that there could be something wrong with Hailey.

There were no complications other than my high blood pressure the week Hailey was born, which is something that happens to many pregnant women. On December 1, 2009, when I was 39 weeks and a 3 days along, my water broke after being induced for 2 days. Hailey arrived at 6:04pm. On my birth plan I had made it clear I wanted Hailey put on my chest, skin to skin for bonding purposes, immediately after delivery, even before the umbilical cord was cut, which Josh was to do. After I delivered Hailey I waited to hear what all parents want to hear, the beautiful sound of a crying baby - and I got it. However, I knew something was wrong when she wasn't being placed on my chest, and I knew they were cutting her umbilical cord. I kept asking Josh and whoever else what was going on and what was wrong with Hailey. I didn't get any answers. Hailey was then rushed off to the NICU and I never even saw her.

Eventually I learned that it appeared as though Hailey's intestines were on the outside of her body and physically there were some things wrong with her. They told me that she had to be flown to another hospital that had a level 3 (I think that's what it's called) NICU because the hospital I was at didn't have the capabilities of taking care of a baby like Hailey. (If you want to know more about this you can read one of my facebook posts). The the doctors from the Children's Hospital ran a FISH test to try to determine what was wrong with Hailey and by the time the results came back a few days had passed. Right before Hailey was to undergo surgery to stitch up her stomach from having her intestines put back in, the doctors told us Hailey had Trisomy 18. We really didn't know anything about it, and they had to explain to us that it was a lethal genetic disorder - basically, she was going to die...

We received the worst news a parent could possibly ever hear. The future for Hailey looked pretty dark, and we learned more and more about Trisomy 18. Hailey's birth was a miracle in itself since most babies with Trisomy 18 don't survive birth. We also learned that most don't even make it out of a NICU or the hospital. So the fact that Hailey was able to do so well and come home with us was a huge blessing from God. And the fact that Hailey lived to be 36 days, over a month old, was also a miracle and a blessing.

We knew the entire time we had Hailey that we could lose her at any minute. I had a hard time mourning the future loss of her while she was alive. But we cherished every minute we had with her and did everything we could to make sure she was comfortable and happy. Even if she lived a short life, I wanted to make sure it was a full life and the best one she could have. While we were in the hospital and out of the NICU in a private room with her, we made sure she was held every minute - she was held in someone's arms for almost a week straight. When we got home we made many memories with her - car rides in her car seat, a walk outside in her stroller, Birthday parties, baths, reading books to her, singing to her, dancing with her, showing her Christmas lights and the Christmas tree, etc. I made sure she smelled the smell of flowers and felt different textures - I ran her hands along my face, across our dog's fur, across her stuffed giraffe, etc. Her daddy even wiped chocolate cake on her fingers and face... :) We covered her in kisses - eskimo and butterfly included. We gave her tons of fun nicknames - from munchkin to alien to booger... :)

The joy she brought us the 36 days she was with us and the continued joy we receive in remembering her is indescribable. We tried to give her everything we could as her parents, but she gave us so much more than we ever could have asked for...

So in looking back, I am glad that God worked everything out how He did... I'm glad the screening didn't show Hailey's Trisomy 18 because I probably wouldn't have enjoyed the pregnancy as much and I would have been labeled "high risk" and had more complicated prenatal care that wouldn't have done anything helpful in the long run. Also, I'm glad that the doctors didn't pick up her intestinal problem in an ultrasound because then I wouldn't have been able to have the natural, vaginal birth that I wanted and had.

For anyone who knows or has a baby with Trisomy 18 or is pregnant with a baby that has Trisomy 18 - I know that no parent wants their child to be sick or die and how devastating the news can be when you learn that your baby has Trisomy 18 - but know that that child is still AMAZING. Yes Hailey was sick and had many problems. Yes I was devastated to learn she had Trisomy 18. Yes I was devastated to lose her... and yes I wish she had been a healthy normal baby... but she wasn't...and that's OKAY. She was created how God wanted her to be created. I never imagined that she could be as amazing as she was since she was so sick... But she was the BEST baby and daughter I could have asked for. She brought me so much joy my heart overflows, even after her death when my heart is broken and she's not here, the memories I have of her make my heart overflow with joy. She was simply awesome. So to anyone out there who knows someone who is pregnant with a baby that has Trisomy 18 or another genetic disorder - please encourage them to not be afraid and keep their baby because their baby will still bring them so much joy and will touch and bless their lives forever...

I'm officially a blogger

So today I decided to start a blog about Hailey, Trisomy 18, and all of my related experiences, thoughts, and feelings. One of the reasons I became an English teacher is because I love writing, and one of the reasons I love writing is because of how therapeutic I find it. Therefore, I'm hoping this blog will not only give me something to do, but will also help me through the grieving and healing process.

Today I transferred all of my Facebook notes into my blog so a lot of the posts from today are old information for those of you who have been following Hailey. I also included the song and poem from Hailey's memorial service.

Oh and a disclaimer, just because I'm an English major / teacher does not mean this blog is going to be grammatically correct. :)

99 Balloons

Here is the "99 Balloons" video about Eliot a Trisomy 18 baby. His parents did an amazing job telling his story. It's clear that God sent this child to this specific couple for how loving they were! I imagine him playing with Hailey in heaven. :)