One Week Ago..

One week ago today I found out my baby was gone...I look back at that moment, and I honestly can't believe it has been a week already..where did this last week go? I feel like this is still all a bad dream and that I am going to wake up from it any day now..I wish that was true..I know it is going to take time to heal the pain, but I just feel so drained and so numb. I just can't understand how I am supposed to go on like nothing has happened..

I went outside with the kids this morning to play in the snow..that brought a smile to my face just seeing the joy on their faces every time they threw a snowball or went down the hill on the sleds. I really got a good laugh when Mike went down and hit a huge wall and actually got some air..the kids thought that was pretty funny too. Even Roxie was enjoying herself today which is crazy since she hasn't had much energy these days..she seems to be feeling my grief. She has always been really good about that..she knows when I am just not myself and when I need her the most. It is funny how dogs can be that in tune with your emotions..Thank goodness for that though!

I am just trying to keep on going...I am finding small tasks to be a bit easier these days...I just haven't been able to even do small things lately..my mind is just not there these days so any little thing that I get done is a major accomplishment for me. This sounds silly, but I was able to give my kids their vitamins last night..I was actually able to remember to do it.. I just feel so badly for Carley and Parker because I am not really their sense of security right now. I know I sort of checked out, but I am really trying to give them extra love every chance I get. I want them to know I am still here and that I am not going anywhere. I know Carley has some fears about all of this, but I need to reassure her that there is nothing to be afraid of. I can't promise her that I will always be here because that is a lie..we have no idea when our time is up..I just want to make sure she feels secure so she isn't afraid..

I feel like our life is just going on in one big blur...we are all just going through the motions without really feeling time passing. I know that each day will pass and that I will make it through each and every day in some way or another. The one thing that I don't want to do is to ever forget Aubree or to never talk about her..she is my daughter, and I want to make sure everyone knows that she is a part of my family. I bought Parker a shirt that says "Big Bro" on it. I contemplated giving it to my best friend for her little boy to wear since he is the right age and since he just recently became a big brother. I have decided to keep it for Parker and to let him wear it because he is in fact a big brother even if his little sister is not with us anymore..We are not going to forget her, and my kids will know every little thing I can share with them about her..Aubree is a Berk and they will need to know about her so they know who to look for once they get to Heaven...

Her Memorial Service

Today started out pretty rough..I couldn't even talk because nothing would come out but sobs and incoherent words. I really didn't know how I was going to get through her service in one piece. I had thoughts of grabbing her out of her casket and running off with her. I wonder how long it would have taken before someone tackled me...I really wasn't sure how to even handle seeing everyone since it was not exactly for a joyous occasion. We simply got ready this morning without saying much to each other and headed on our way to Ringgold.

We had to drop the kids off at my aunt and uncle's house before the service because we decided not to take them with us. Carley is really having a hard time with all of this so we didn't think that it would be a good idea to bring her into a room with even more sadness..Parker would have just caused too much of a distraction because he can't sit still for very long. The first person I saw this morning was my uncle...he hugged me and we cried a little bit together. I usually try to keep my self from crying in front of people, but this was just not possible today..I went inside to take the kids in to get them settled, and had to face the rest of my family that I had not seen yet. It is just so hard seeing people that you love crying for you..

We went to the small church in Ringgold (the church my mom and dad got married in actually), and on the way I prayed for strength to get through this day. I walked in the door and had to go and see my beautiful baby girl in her casket. The flowers that they put on top of her from us were perfect...a beautiful spray of red tulips..my favorite as well as a perfect flower for Aubree. A red tulip means true love...There were several other arrangements from people we know or from people that know of us..it was so nice of them to send flowers for my little girl. I cried just seeing the casket and seeing the Baby Be Blessed with her name on it. My mom got her a beautiful pink lamb from them that has the scripture verse Matthew 19:14 on it ("Let the little children come to me..the kingdom of heaven belongs to such as these."). My mom is planning on getting me one just like it to keep for myself. Her little lamb was placed in her casket after the service along with her mother and child angel from my sister and Jeff, and then a beautiful pink cross with her initials on it that Dan made for her..Mike's mom made her a beautiful pillow for her to lay on with a butterfly for Aubree, four red hearts (one for each of my family), and four white hearts (one for each of the grandparents). It is really nice that everyone wanted to include something from them in her casket. I of course gave her the blanket we made for her.

The service went very smoothly and was beautiful in every way. Pastor Brad did a beautiful job of making it something we will always remember. We did use the two songs I have mentioned in previous posts.."I Will Carry You" is probably the most beautiful and most difficult song to listen to. It is honestly perfect in every way though because it says everything I could ever say to my child..There were a lot of tears through that song from everyone. I honestly felt sick to my stomach the entire service. I even thought I might throw up at one point. I am not someone who has a weak stomach either..it was just that hard to handle. We did do something differently for her then what most people do because it was such a small group of people. When we had her committed in the church we had everyone lay a hand on her casket. It is customary that only the pastor does this, but I wanted everyone there to play a role since everyone there plays a huge role in our lives and in her life. After the service was over Mike and I spent some quiet time with her, and we told her how much we loved her. I was in a bad place at that point because I couldn't leave her..everyone just kept telling me it was just her body..she was gone. I know that, but I still wanted to pick her up and love her the way that I should be right now. The only complaint that I have is that her name was spelled wrong in the bulletin...not everything can be perfect I guess..

We went over to my aunt and uncle's house to have some lunch with the family. It was a nice distraction. I spent some time visiting with everyone, and I shared the beautiful pictures that we have of her thanks to NILMDTS. We got them rushed to us yesterday...so beautiful. I am carrying them around with me to show to anyone who wishes to see her. I know some people aren't comfortable seeing her, but she is my daughter, and I am just as proud of her as I am of my other two. We spent the day just sitting around and talking. It was pretty relaxing. I wasn't sure we were going to stay all day, but being at home alone wasn't really going to benefit us in any way I don't think.

Mike and I decided to go see her grave before we left. We weren't there for her burial because of the weather, but we wanted to see her before we left. As we walked out to her grave it reminded me of how wrong this way...My grandfather bought that plot years ago with every intention of his burial or my grandmother's being first and we would surround him..Aubree actually got the best plot...She sure does have a great "view", but she should not have been the first one buried. As I stood next to her grave I promised her that I would be by her side some day...As morbid as it is to think about it is really nice knowing where Mike and I will buried once we are gone. I don't really care just as long as I am with my daughter..Her tulips were placed on top of the ground and by the time we got there they were covered in snow..it was so beautiful in so many ways and so sad in so many other ways..Even her tulips were going to die quickly..

I am feeling at peace in that the physical part of this whole ordeal is over..now comes the hard part though..the emotional part. I know our grieving has just begun, and I know that there are going to be some really rough days ahead, but I also know that God is going to guide us through this journey..he is going to make us a much stronger couple and family in the long run. Losing my daughter has taught me so many things, but the most important lesson we have learned is to never take anyone for granted...love every day you have with those you love and love them fiercely. I used to be so afraid of death...now I am jealous of whoever gets to meet her first..it is so strange how quickly we have grown up, and how such a small baby could teach us so much...

Did anyone notice that it snowed today??? God and Aubree were giving me the peace that I needed today in the gift of snow since they know how I feel about it..That alone made me smile..

We are listing these two sites that people can donate to in order to honor Aubree:

www.trisomy18.org/goto/aubreehope22
www.nowilaymedowntosleep.org

Fear

I am so thankful for all of the wonderful family and friends that we have in our lives. It has really helped having my sisters and their families here to distract me in some ways from what is to come tomorrow. I feel like I have been so strong this week for the most part. I can't say that I have been able to keep it together all of the time, but I have been trying to stay on top of myself for the most part. One woman who lost a child to Trisomy gave me this advice...you are doing ok as long as keep getting out of bed each morning. She's right. Each day that I get out of bed is a good thing because I am forcing myself to keep going.

I am starting to panic about burying her tomorrow. How do you bury your child? The thought of my beautiful baby girl being put in the ground is almost too much. I can't stand to think about her body decaying in the ground..I know it is just her body and that she is just as beautiful if not more beautiful where she is now, but it is just hard to think about as her mother...You never want to think of your child in that way. I know that tomorrow is going to be really hard for me..the songs we are playing at her memorial are going to be hard enough! I am just going to continue praying for strength. As I said before..God isn't going to abandon me now!

I have been receiving several sympathy cards and flowers..I truly appreciate it all. I can't say they are easy to get or easy to read..we are supposed to be receiving congratulatory cards and flowers...It is just all wrong in so many ways. I do have to say that we have received two cards in particular that have really made sense to me. Those two people were able to say exactly the right things. A special thanks to Dan's mom and dad as well as my Aunt Neasie.

I keep waiting for Aubree to wake up and for this nightmare to be over. I keep thinking that this can't really be happening. It doesn't really feel real in some ways. I know it is going to feel real when I am around all of the other babies that are due at the same time as Aubree was. I am hoping that I have strength to get through that as well. I know that we will be ok, but I also know that it is going to take time. I want to be a happy person again, and I am going to trust that God will keep me on the path of peace..

A Beautiful Gift

Click on her name to view a slideshow of the pictures the photographer took of her on the day she was born. The Now I Lay Me Down To Sleep organization provides such a wonderful service to those of us grieving the loss of our little angels. I honestly can't even put into words how grateful we are to have this as a memory of the one day we held her in our arms. I know this is hard to see, but this truly captures her beauty in a way that no one else can.

Aubree Hope

Our daughter...

Another Rough Day...

Today was going to be a rough day to begin with because we had to make funeral arrangements for Aubree..it didn't make it any easier that my milk came in overnight..not only am I in a lot of pain physically but it has been very emotional for me as well. I know my body is just doing what it is supposed to be doing, but I can't feed my daughter in the way that I am supposed to. I love everything about nursing..the closeness, the bonding, the feeling that I am providing my child with the best nutrition out there, etc. I have to miss out on that completely..I never even got a chance to help her grow or to bond with her in that way..it is just so difficult for me to get past this..I know I will, but there is just a big part of me that is grieving that alone.

I actually held myself together pretty well while we met with the funeral director. We just discussed the basic stuff and then we discussed her burial. I never in a million years thought I would be picking out a funeral plot for myself at 30 years old. I could never let her be buried alone though...It is nice to know we will be together not only in Heaven but in the ground as well.. I was fine until they showed us the casket..it really isn't what I wanted for her, but to be honest with you it will never be good enough for my little girl. The hard part was that her blanket (the one that my mom and I made for her) was in the casket...it was just so hard to see it again and to know that is where she will be placed...I get that she is dead, but there is still a part of me that is just waiting for her to wake up...I'm just glad I didn't have to see her today..I want to remember her as the beautiful little girl that she was on Monday. It also killed me knowing she was in a refrigerator somewhere at the facility...a refrigerator...that in itself is almost too much to bear as a parent..

We met with Pastor Brad to go over her Memorial Service. I think that went well, and I am happy with how it will go...the songs that we have included are almost too difficult for me to listen to, but they are so perfect for her and for this situation. I listened to the one tonight for the first time, and I cried so hard for my little girl..how will I keep it together on Saturday morning? So many people have expressed that they would love to come to her service. I would love to include everyone in this event because I know they want to be there for us, but I personally can't handle it..I am having a hard enough time being around my immediate family. Seeing my sister today was hard enough, and my other sister is coming tomorrow..I just can't keep it together, and I don't want anyone to see me like this. I truly appreciate the love and support we have from our family and friends. I don't want them to have to experience this service in so many ways..it is not going to be easy at all for anyone..I am so thankful for everyone who wants to be there for us so please understand that our keeping this service small is merely because I just can't emotionally handle large crowds right now.

We are just taking things one day at a time right now. I have set up two pages that anyone can donate to in honor of my beautiful girl. Her obituary will be in the paper tomorrow...I just can't believe I have to put an obituary in my daughter's baby book...this is all wrong in so many ways, but I know that God is bigger then all of this...he is going to hold me up and carry me through this...

This song is the anthem of my life right now, and it keeps reminding me I am not alone...

Your Hands by JJ Heller

I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That You would take my pain away
That You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crookedly lie
Oh Lord, before these feet of mine
Oh Lord, before these feet of mine

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

When You walked upon the Earth
You healed the broken, lost, and hurt
I know You hate to see me cry
One day You will set all things right
Yea, one day You will set all things right

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

Your hands
Your hands that shape the world
Are holding me, they hold me still
Your hands that shape the world
Are holding me, they hold me still

When my world is shaking
Heaven stands
When my heart is breaking
I never leave You when...

When my world is shaking
Heaven stands
When my heart is breaking
I never leave...
I never leave Your hands

"Aubrey"

What I have never told a lot of people is the real reason we decided to use the name Aubree..There was a very popular song by a group called "Bread" from my mom and dad's generation. I have always loved their songs, and I spent many hours listening to the one cd that I had while in high school. I always liked the song "Aubrey" but I vaguely recalled it being a sad song..My dad wanted to name me Aubrey when I was born so I promised my dad that if I had a little girl with red hair I would name her Aubrey for him...I had Carley who had dark hair so she didn't get the name, and then along came Parker..Mike and I decided we just really liked the name and we didn't care if the baby had red hair or not this time around so we were going to use it as our girl name regardless for my dad..My dad just recently told me I needed to read the words to the song...I did that today, and I now realize why we named her Aubree...it was all a apart of God's bigger plan...

Aubrey

And Aubrey was her name,
A not so very ordinary girl or name.
But who's to blame?
For a love that wouldn't bloom
For the hearts that never played in tune.
Like a lovely melody that everyone can sing,
Take away the words that rhyme it doesn't mean a thing.

And Aubrey was her name.
We triped the light and danced together to the moon,
But where was June.
No it never came around.
If it did it never made a sound,
Maybe I was absent or was listening to fast,
Catching all the words, but then the meaning going past,

But God I miss the girl,
And I'd go a thousand times around the world just to be
Closer to her than to me.

And Aubrey was her name,
I never knew her, but I loved her just the same,
I loved her name.
Wish that I had found the way
And the reasons that would make her stay.
I have learned to lead a life apart from all the rest.
If I can't have the one I want, I'll do without the best.

But how I miss the girl
And I'd go a million times around the world just to say
She had been mine for a day.

Overwhelming Sadness..

The last post I wrote I really had a bad feeling about Aubree..she was just not the active little baby that I knew her to be...I decided to hold out until Sunday to see if maybe she was just having a lazy day...Sunday morning we got ready, and I called the doctor. He said I could wait until Monday morning because it doesn't usually happen that quickly. I didn't think I could hold out another day so he agreed to let me head up to Labor and Delivery to be hooked up to the monitors. Once I was there the poor nurse looked for about half and hour..hearing nothing...I can't even imagine how I would have felt if I hadn't known this was a possibility..She finally called my doctor who was already on his way in. He hooked up the ultrasound to take a look..sure enough her little heart was not beating anymore. I knew it, but to hear it is just devastating..We made the decision to just induce because I really didn't want to walk around with a dead baby for another day or so..too much to bear I think. They did some kind of pill to stimulate labor since my body was not ready at all. They said that it should take at least 3-4 pills for labor to really start. As soon as he inserted the pill I was contracting within minutes. I guess it was a little gift from either Aubree or from God himself. Another gift I didn't mention was that Miss Aubree turned for me..she was head down and ready which made a lot of things easier on all of us. I decided that I didn't want to feel any pain with this labor so I decided to try Stadol..didn't like it at all..it made me feel extremely tired and almost dizzy. The pill had to be inserted every 4 hours so we had a long night ahead of us. I really wasn't comfortable at all since I had a lot of pain with contractions that never stopped..back to back. I requested an epidural, but for some reason the guy wasn't getting his pages so it took him about an hour or so to even get in there. I was given another dose of the Stadol to take the edge off the pain. In the meantime I was feeling sick to my stomach probably because of the stress and probably because it is a side effect of the pill that was causing the contractions. The did put me on meds. for that thankfully so that at least went away temporarily. I went to almost 1 cm. with the first pill and then 2 cm. with the second pill. The third pill was inserted around 10:00 so we decided to try to rest a bit. I ended up getting a really bad headache that was due to a high fever from the darn pill...they gave me Tylenol to help, but it didn't take away the headache unfortunately. I heard a little noise and felt a popping sound so the nurse decided to check me. I was at 5 cm. at around 1:30. They said that my water was about to break so it would all happen very quickly from here on out. We called my mom so she could be there for the birth. I was very tense and scared since I wasn't sure I was ready to see her or to face the whole event. I kept asking God to give me strength to do what needed to be done...At around 1:50 or so Dr. McCoy came in and they saw her head. The broke my water and one half of a push she was out at 1:57. She was so beautiful and so tiny...She had a full head of dark hair. I guess that is the one thing I was wrong about..I really thought she was going to have red hair..I guess she just had the red head personality..a little fiery! My mom got there right after her birth. They wrapped her in a blanket and finally gave her to me to hold. I was amazed at how perfect she was in every way..and how much she looked like her big sister Carley..I can't imagine how much hair she would have had if she had been born full term with as much as she already had at 31 weeks! She was beautiful and really had no physical signs of Trisomy at all..only her ears were a little flag...they were down a little bit farther on her head then they should have been. As we looked at her little 2 pound, 13 1/4 inch body we took in everything about her. She had Parker's lips, the same nose as both of my kids (still not sure where the button nose comes from..), my eyebrows and eyelashes (blond as can be), her daddy's toes and legs, and she shares several of the same characteristics as Carley..facial structure, hair color, long legs, big feet, and her long fingers. We spent most of the day holding her and loving her. I know that might sound a bit morbid, but it was so beautiful to just hold her and get to spend some time with her. I never wanted to let her go. The funny part about all of this is that she isn't tongue-tied..Everything else in her body was wrong, but she got that one right! A little humor from God I guess. She did have the umbilical cord wrapped around her little leg three times so that is why she ended up going as quickly as she did...This was of course was a result of her being so wild! As horrible as this whole experience was it was made a little bit easier by the hospital staff. They were so amazing with us and with her. They treated her like she wasn't gone. There was one nurse in particular who deals with this stuff as part of her job description. She bathed her in the room with us and she dressed her in clothing made by volunteers in the community..What a wonderful gift they can give to families in our situation. They honestly made things as easy on us as they could. It took me a little while to feel my legs so we didn't get moved until around 8:00 or so. I honestly think that was the best epidural I have ever had..I felt nothing at all and the doctor made sure of it before he left.

We were put in a room at the very end of the hall so we wouldn't hear any babies crying..my hearing is too good so that really wasn't the case for us. It was ok though..babies are a gift even if it is difficult for us right now. We had a photographer come in from Now I Lay Me Down To Sleep to take some pictures of her around 9:30...she was so wonderful and she shared that she too lost a baby at 32 weeks so she knows how we feel. I always wondered how some people can be so strong in these situations. I think it is a wonderful gift that you can give to a family, but I also think it would be so hard to physically do it. We talked to her for a while, and then Pastor Brad came in and met with us. He listened and then he gave us some resources to begin planning her Memorial Service. My mom and dad came in so he could annoint/baptize her. I know she is already with God, but it still meant a lot to us to have her body go through the process. We spent the remainder of the day taking turns holding her and loving the time we had left with her. Mike and I had our steak dinner last night to celebrate her birth..it's just too bad we didn't really feel like we had much to celebrate. We are both having a hard time finding our appetite these days.

Mike decided that as long as we were given the ok we would be going home asap. I of course didn't want to leave her, but I really didn't think I could ever leave her. We got discharged and got ourselves changed. I of course couldn't breathe, but Mike kept saying how we needed to do this...They finally came and got her, and I had to say good-bye which was probably the hardest thing next to delivering her that I have ever had to do in my life. I left the hospital carrying my pillow..not the infant carrier that I should have been carrying..The pain we feel right now is unbearable at times, and I sometimes feel like I can't really keep going. I know my hormone levels are dropping so that really isn't making this any easier...I know God is not going to abandon me now since he has already brought me so far, but I am truly grieving the loss of my daughter. I don't get to set up a nursery like my friends do, and I don't get to nurse my little girl, and I don't get to see the color of her eyes, or see her smile at me..I know she is smiling in Heaven, and I guess that does help to know she is in no pain at all. My little girl is an angel..Mike made me realize that she honestly has it better than we do right now...he's right..I just have to keep on going...I am going to take things one day at a time, and I am going to hope and pray that each day it gets a little easier to breathe..

You Just Never Know..

Today was my great aunt's 95th birthday...wow..how many people get to live that long and still look good? She is really doing well for her age, and she is so thankful to have lived to spend so much time with all of us. They had a small party for her today at the place that she lives..I wasn't sure if I was going to go since I wasn't really ready to see all of my family just yet, but my new mentality set in, and I just thought to myself..you just never know...I didn't want to be selfish and let my emotions keep me away from such an important celebration in someone's life. She is 95...you just never know when that might be the last time I get to see her living. I put on my brave face and went to celebrate this wonderful birthday with her and the rest of my family. My kids really helped me through it, and it also helped to talk about my house..thank goodness that is what people asked me about..I just can't talk about Aubree especially today..My kids really had fun exercising at the senior center and "playing" Checkers. Parker mostly had fun eating the chocolate covered apples out of the edible arrangement..in reality he really only ate the dark chocolate off of the apples and handed the rest to me..He is my son that's for sure! I laughed so hard at Parker when he brought out some resistance cords from the exercise room because he actually stood on them and tried to use them correctly..he really does pay attention to what I am doing! That kid is way too smart for his own good sometimes! He sure does brighten my day though with all of his laughter and his smiles. Carley has really turned into a little mother these days..she is always so concerned about me, and she wants to make sure I'm taken care of....what would I do without her to get me through? I look at my entire family, and I can't help but be thankful for what I have...they all are special in their own way, and they all have a way of bringing a smile to my face even when things are rough..

As for me today..I have been in a bit of a panic since this morning because I haven't really felt much from Aubree. I know that her time could be up at any minute, and that is so hard for me to accept sometimes. I just keep thinking that she is going to make it for a while, and after today I'm not sure that is the case..I know that every day is a gift, and I know that there is never a guarantee to how long she will live...I just keep thinking..not today, not today..I haven't had enough time...I have no choice in the matter when it comes to this or to anything really...I just don't feel like I am ready to let her go just yet..I'm not really sure I will ever feel that way though..I did go for a walk with Mike just to get out in the sun for a bit, and as I was walking I had a sense of peace wash over me..I know that I can't change this situation, and I know that God is in control so if he is ready for her then I have to accept that whether I want to or not. All I ask is that you pray for us right now because we are going to need a lot of support and strength to get through this...This verse really helps me to remember what a gift she is to me..

"For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them."
Psalm 139:16-18

So Thankful

I am so proud of myself for forcing myself to go to play date this morning...it was so nice to see my friends and to just get out of the house with the kids for a bit. They had so much fun too! It had been way too long since I had seen anyone or their kids. It was nice to just relax and talk about happy things. I did tell them that my only requirement was that we not talk about it. We talked a bit about it, but I didn't cry! Yay me! They were commenting on how strong I am, and everyone keeps saying that they don't think they could be strong like I am being...how do you know? We are so much stronger than we think we are. I also reminded them that they would do the same as me...we can't crawl into a hole and die..we are mothers who have families who depend on us. They did agree to that statement! Also..the one thing I have noticed the most about people who have been through this (at least the ones who talk about it), and are still positive is that they all have one big thing in common..faith in God. Every single one of the people who are willing to share their story and are still functioning in a normal fashion are people who have God in their lives. Hmm..wonder why? Every time someone asks me how I am getting through this that is my number one response. I can't do this alone...

I guess more and more people are reading this blog..I started it for myself and didn't even tell anyone I was doing it because it was more for myself than anyone else. It is a good way for me to express how I am feeling since I am not really good at doing that verbally. I also wanted to express my feelings without anyone listening because everyone just wants to fix how I am feeling..there is no fix for this kind of pain. I know everyone thinks I am so strong...I'm not always that strong..I cry several times a day, and I sometimes feel like I can't breathe, but I have to hold myself together as much as I can because it truly upsets Carley. I get depressed thinking about all of the little clothes that I will never get to buy for her or all of the fun memories that we won't get to have with her, the excitement of her first smile, her first steps, etc...I know reading all of this is tough for many of you, but like I said..I wrote it for myself to express my feelings..I never really thought anyone would want to read this, but the more and more people who find it are thanking me because now they know how I am doing and what I am thinking. I guess I never really thought about it like that..see..we learn something new every day! Even Mike said to me, "Good grief Amanda..you didn't tell me I needed a tissue to read it." Believe it or not I didn't even give him the address for a while..He is one of the worst for me in that he just wants to fix everything...He along with my mom and several others just want to take away the pain. Mike is probably one of the best men out there in my eyes...not only is he a fantastic father, but he is a wonderful husband. There is never a day that goes by that I don't feel love from him. He is sensitive, caring, Godly, and he loves us with everything he's got...Boy am I lucky..I feel like I won the jackpot in the marriage department...

I am so thankful that we have so many people who love us...We truly are blessed, and we thank you all for being there for us through this.. This road is not going to be easy or short unfortunately, and I can't promise you that I won't be ugly at times, but I am going to try my hardest to keep my eyes looking upwards and being thankful for everything that God has blessed me with. My sister recently found another song that is perfect for Aubree's memorial service. It is by a group called Selah..The lead singer to this group lost his fourth child Audrey because she was "incompatible with life." I guess they were able to spend two hours with her after she was delivered. His wife wrote a book that I might just get for myself, and she also wrote the words to this song..you might want to grab a tissue...

I Will Carry You-by Selah (Audrey's Song)

There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies, wipe your teary eyes
Who could love you like this?People say that I am brave but I’m not
Truth is I’m barely hanging on
But there’s a greater story
Written long before me
Because He loves you like this

So I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And I will praise the One Who’s chosen me
To carry you

Such a short time
Such a long road
All this madness
But I know
That the silence
Has brought me to His voice
And He says…

I’ve shown her photographs of time beginning
Walked her through the parted seas
Angel lullabies, no more teary eyes
Who could love her like this?

I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All your life
And I will praise the One Who’s chosen Me
To carry you

It's Been a Bad Day...

Today started out really well since Carley was finally going to get to go to preschool..She was so excited to be going, and I was happy for her since she loves it so much. As we were got in the car I found a couple bags of chips (a special treat in some ways to me) in my front seat thanks to Mike. Carley asked why he got them for me, and I told her daddy was just trying to cheer me up. She of course asked why and we had to go into the whole discussion about how mommy was going to miss Aubree when she went to be with Baby Jesus. She then goes on to say, "But we will always love her..." I'm not even out of my driveway yet and I am crying...great..it was going to be one of those days...She then went on to ask why Aubree was going with Jesus and where he was and how we got there..it was quite a discussion on our way to school. She did tell me that God made all of her friends, things, etc, in this world. She also told me that she learned that at school...thank you Miss Carey! After I dropped her off I had to run a few errands. I decided to go order Parker's mattress first for his new room. The lady of course asked me if I was having another baby and when I was due. I told her, and then she continued to say how small I was...I thought for a moment...how do I handle this? This has been my main problem when dealing with the public..how do I traumatize them with my news? My mom says I have to either do it now or later when I run into them without a baby..I figured I would try out the tactic I haven't used yet...being honest..I told her that that the baby was actually really sick, and she probably wouldn't make it (with tears in my eyes of course). I told her I don't like to tell people about it because it is such an awful thing to hear..she in the meantime is telling me how sorry she is as she starts to cry...She said that is just horrible news, and she will keep me in her prayers..I guess being honest might not be the way to go..I feel so badly because I just ruined her day, and her day had just begun..I am at such a loss at how to deal with this...This is my life right now, and I can barely keep it together to even talk to people about it..I hate when people ask me about Aubree because I am so sad about her fate..Life is just not easy these days..I am also so paranoid about Carley telling random people about her baby sister going to live with Baby Jesus..I know she is going to talk about that for a long time..she told random people about my mom and dad's dog Tyson going to be with Baby Jesus for the longest time...I guess I might never get my answer here..I just have to pray for strength when answering these types of questions.

I can't tell you how many people have said about how sad it is that such a bad thing has to happen to good people..I'm glad that people see us as being "good." :) As for Aubree...she is not bad in my mind at all..she is a blessing. Sure it is hard, but she is a gift from God that I only get to keep for a short while. We get blessings every day and there is not a time limit set with them...we don't know how long we have them..some are longer than others, but what we do need to remember is to be thankful for the time we have them..God is not punishing me..in fact he is doing just the opposite. He has blessed me with an angel that has taught me so much and is teaching others in the meantime. Sure, I would love to keep her, and sure I would love to not have to go through this, but guess what...I don't have a choice in the matter, and I am going to make the best of this situation. I can remember when we were going through infertility treatments, and I witnessed a beautiful sunrise on my way to work...I remember thanking God at that moment for such a beautiful thing..When did you last thank God for things like sunrises, snowflakes (just had to throw it in there), your children, or even the food that you eat? Life is so precious..remember to be thankful for every minute of it that you have...

God has really been speaking to me through songs these past few days..I know that is a big part of how I feel close to him so I guess he has chosen that method to speak to me more clearly so I can understand. I have XM radio in my car..too bad we can't just pay for one channel though! I only listen to the Message because not only is it wholesome for me, but it is good for my kids to listen to as well. I find Carley singing along to several of the songs on the radio..and they say that kids don't listen to the words! I heard several songs this morning that really lifted up my spirits and made me cry of course, but they were just what I needed to hear. The song "Shadowfeet" by Brooke Fraser reminds me that no matter what happens I am going to turn to God to get me through...

Walking, stumbling on these shadowfeet
toward home, a land that i've never seen
I am changing, less and less asleep
made of different stuff than when i began
and i have sensed it all along
fast approaching is the day


when the world has fallen out from under me
I'll be found in you, still standing
when the sky rolls up and mountains fall on their knees
when time and space are through
I'll be found in you

Theres distraction buzzing in my head
saying in the shadows it's easier to stay
but I've heard rumours of true reality
whispers of a well-lit way



You make all things new
You make all things new
You make all things new
You make all things
You make all things


When the world has fallen out from under me
I'll be found in you, still standing
Every fear and accusation under my feet
when time and space are through
I'll be found in you
when time and space are through
I'll be found in you
when time and space are through
I'll be found in you

Perspective

I need to vent a little bit for the moment...I am so sick and tired of everyone complaining about how awful the snow is..I understand it isn't fun to shovel, and I understand it isn't easy to always drive around in it, but seriously? How can you not look at the snow and find peace? There is nothing better than walking out in the snow especially at night after it has just fallen. There might not be any sounds at all, but there is definitely a sound that is associated with freshly fallen snow..It brings such a sense of peace in me, and sometimes I wonder if God is really trying to give me some extra peace these days with all of the snow he is blessing us with...Yeah, I know I am a skier, and I appreciate the snow because of that, but I also just appreciate it for all of it's beautiful qualities...Think about how beautiful the trees look when they are covered and the houses...it is almost like God sending his love down to us to blanket us in beauty...he is showing us a glimpse of what Heaven will be like..perfect and beautiful..Remember..no two snowflakes are alike..if that doesn't show God's power and beauty then you have truly missed something...If snow is the worst thing in your life right now maybe you should put your life into perspective...I wish we could all just have that "problem." Ok..enough about the snow..

I got my official results of my amnio today...She (yes there were definitely two x's) has Full Trisomy 18 which is what they found in the Fish test. I know this might sound strange to some of you, but I am so relieved. I am so glad that they found an 18 in every cell because that means my other children are ok..I would hate for them to have to go through any kind of testing or even have to experience this as a result of us passing an extra 18 on to them..Aubree just got really unlucky in how her cells divided. I guess you can look at it either way though..we are really lucky to have her be a part of our life because she has taught us so much about life and how we need to be putting things into perspective. I can't say I was good at putting things into perspective before Aubree, but I have really learned how important that is from her. I have also really learned about material things and how they mean nothing in the grand scheme of things...I would give up my granite countertops that I so desperately had to have in order to get a few moments with her..Life is so much more than things..we can't take any of it with us when we die, but we can take all of the love and memories we have had with others..

My mom found a beautiful song that I think we might just use at Aubree's memorial service because it is so perfect for her. It is called "Visitor From Heaven" by Twila Paris. I am attaching the lyrics because it is so fitting for my little angel..

A visitor from Heaven
If only for a while
A gift of love to be returned
We think of you and smile

A visitor from Heaven
Accompanied by grace
Reminding of a better love
And of a better place

With aching hearts and empty arms
We send you with a name
It hurts so much to let you go
But we’re so glad you came
We’re so glad you came

A visitor from Heaven
If only for a day
We thank Him for the time He gave
And now it’s time to say
We trust you to the Father’s love
And to His tender care
Held in the everlasting arms
And we’re so glad you’re there
We’re so glad you’re there

With breaking hearts and open hands
We send you with a name
It hurts so much to let you go
But we’re so glad you came
We’re so glad you came

Just Another Snowy Day

Today was just another day in the Berk household...my kids were a bit cranky thanks to not being able to get outside or get their way for that matter..I can say that I think I have only teared up once so far..what a big accomplishment for me! I am still not really ready to go out into the "real" world and talk to a lot of people..I am still not answering the phone when it rings unless I feel like I can talk to whoever is calling, and in all honesty it has really only been one person that I have been able to talk to or even see..I keep hoping that each day will get easier for me. I have a great group of moms that I get to see every Friday for coffee, and one of those moms asked me if I would be up for a play date on Friday..I would really love to see them because it has been a while and because they have been so supportive of me..I just don't know right now..I know I can't stay hidden forever. Everything I have read says to keep seeing people in order to help with the grieving process. I just don't know how to carry on without crying about everything..So many people have told me they would just cry with me if need be...that doesn't sound like much fun to me! Why would I want to have people over to cry? I feel like my life is morbid enough as it is..I would love to just laugh again like I used to..I might just try and push myself for the play date..it might be good for me and for my kids.

We took the kids over to the house tonight so they could see the carpet that was installed today...they were so excited...they were also out of control! I am not sure I want to move in with them if they are going to be like that! :) They are truly getting excited about having a new home. I am starting to get more and more anxious about it. I was in such a rush before because I had to get ready for the baby...I am not really pushing anymore..I feel like we don't really have to prepare for her because she probably won't come home..I hate thinking that way, but I know we have to be prepared for that. It breaks my heart every time we go over there and Carley has to go see the baby's room..It is right at the top of the steps so every time we come up them that is what we see first. We painted it a beautiful green color that is honestly my favorite room in the house..My mom said that she was glad I liked it since I would be spending so much time in there..not really the case anymore. I don't even know if I will be able to keep the door open for a long time. Do I set up my nursery or do I do something else with that room? Mike still says he wants another baby..I just don't know at this point. I need to see how we come out on the other side first. Aubree's room will always belong to her in my mind..how do I give it to someone else or even put anything else in there? I know you get through that, but I am still at the beginning stages of this whole grief process. I told my best friend yesterday that I think I might be in denial for years..

As for now Aubree is very active. I had to go pick out a countertop for over our washer and dryer. I had a tile with me to match up the colors and when I bent down she actually kicked the tile through my shirt..it actually moved...Isn't it crazy how something so small can be so strong? She really is a Berk...:)

Reality

Today I had to go see my regular OB/GYN for my routine check-up...I got in relatively quickly which was a shock since there was a whole waiting room full of people once we got there, maybe one perk in this whole mess? I then didn't have to do the glucose test because she is already so small already, and I never had problems with diabetes with my other two..not really the main concern I guess! I was being so strong until my doctor walked in..he asked if I had the results of the amnio, and I just broke down...He actually held me and cried with me..he just kept saying how sorry he was...This is the reason I chose this man to deliver my children..he is one in a million, and he knows the pain better than anyone since he too lost his child...He did share a bit more with us today about those times, and it is obviously something that still rocks him to the core..I am not sure you ever really get over losing your child...Regardless..he made it very clear that he will stand by me, and he will get me through this. He also made it clear that he did not think a c-section is even an option for me being that I delivered my other two vaginally, and he doesn't want to do that to me. He is such a wonderful man, and Aubree deserves to have him as her doctor just as much as my other two did..

I then went over to visit with my best friend since it is her 30th birthday today..I haven't seen her since we found out all of this, and I was excited to finally get a hug from her since our only contact was through the phone...I was sad that I had to miss her birthday party on Saturday night, but I was just not ready for a crowd..I am still not for that matter! It was so nice to spend the afternoon crying, laughing, and just plain catching up. She thinks she isn't a strong person...she is so wrong about that..she is an amazing person who doesn't give herself enough credit. I couldn't get through this without her help. She has been so supportive and she has done so many things for me already..I know she is going to be doing a lot more in the future for us in terms of holding me together! It was so nice being able to spend some time with her kids too..they are such blessings, and I am so glad that I have had the opportunity of watching them grow thus far! She has felt so much grief in her life, and she knows what is coming for me..she is scared about it as am I, but I know that we are all going to get through it together with God's help.

As I was leaving she gave me two gifts for my kids, and a gift for Mike and I...I had no idea what to expect. As I got up the courage to read all of the cards (I was a bit tired of crying today..) I was amazed at how many people truly care about us..Each and every card said such beautiful things to us, and their support is so amazing...We truly have found some wonderful people in our small town... I am so thankful for the prayer shawl and for the gifts for my children...I will be getting a lot of use out of the shawl I'm sure...it is a good reminder of God's love for us..For those of you out there...you know who you are..thank you for your love and support..your kindness truly means the world to us, and we are so thankful to have you in our lives...

I was driving home in yet another snowstorm when the song "More Beautiful You" by Jonny Diaz came on the radio. As I was listening to the words I was reminded of Aubree...There could honestly not be a more beautiful little girl in the world...I smiled through my tears, and I agreed with the artist on so many levels...What a gift she is to me and to everyone that knows of her...I will leave you with the lyrics to the chorus which are what speaks to me the most...

THERE COULD NEVER BE A MORE BEAUTIFUL YOU
DON’T BUY THE LIES DISGUISES AND HOOPS THEY MAKE YOU JUMP THROUGH
YOU WERE MADE TO FILL A PURPOSE THAT ONLY YOU COULD DO
SO THERE COULD NEVER BE A MORE BEAUTIFUL YOU

Aubree might not be perfect in body, but she was made perfectly in God's eyes..she has a purpose in this world...we just don't know exactly the extent of that just yet..we are only just learning little bits and pieces of it..

Valentine's Day

Today is Valentine's Day, and I am sitting here just thinking about all of the love I have in my life, and how lucky I am to have the best husband, kids, family, friends, etc..The overwhelming support we have had through all of this is amazing. It truly means a lot to have people on your side because you don't have to go through this alone. Everyone keeps telling me how strong I am...they only see the outside of me..The inside of me is slowly breaking into little pieces, and I am trying so hard to hold them all together for the sake of my family. Sure..I am sad, and sure I am having a hard time accepting that Aubree is going to die...but I need to stay strong because others are depending on me. Carley is already wondering why we have to say good-bye to Aubree, and she really isn't understanding that she can't live with us for very long if at all. Her questions are really hard for me to answer right now because I really don't understand it all either. I know the reason why, but I don't understand why it has to be this way..I know God is in control of this, and I know he has his reasoning, but that really doesn't make things any easier right now. I keep waiting to wake up from this nightmare....

Mike and I went out to eat last night at a Japanese Steakhouse called Robokyo. It was pretty good, but it was not the happy date that I would liked to have had...We then went to see Valentine's Day. It was pretty good, and we were excited to be able to see a movie together since the last one we saw together was probably Sex And The City..it has been a long time! We rarely go out on dates these days so it was nice to not have screaming kids in tow and for food not to be thrown at us...It was so quiet and peaceful, but I still couldn't get past the overwhelming feeling of sadness that seems to come along with me everywhere I go these days. I feel like a part of me is dead, and I wonder when I will truly be happy again...I know that might take a while..I like to be happy so that is hard for me to even think about...

We have been learning about Heaven in church the past few weeks, and it really helped me to know that she is going to be in a place that is perfect in every way..she will have no pain and she will be able to live her life there for eternity. Isn't it funny how you can go to church one day with all of these things on your heart, and it seems as if the message was written just for you? I find that so many times at our church or any church we have ever gone too..I even find it in some of the sayings that the local churches put on their signs...I will just drive by and what is on them is what I truly needed to hear that day...God is everywhere, and he is speaking to us if only we would take the time to listen... I think I might just try to listen a bit harder to him so he can give me the strength I need to pull through this..

Red is the official color of Valentine's Day because it is the color of our hearts...I think of red as being a color that symbolizes strength...It is a color that stands out in a crowd and it is a color that you never forget...I picked out Aubree's blanket the other day, and guess what color it is...red...She is a fighter and her heart is so strong so she deserves a red blanket. I gave Aubree my middle name for two reasons...She will not only share my initials and be a part of me, but she does not give up..she has taught me the true meaning of "hope." Aubree's name means "Elfin King." I know the name was originally a male name, but it has gained in popularity on the girls charts these days...She is going to be "elf-like" because she will be so small so that name even fits her..she might not be a king, but she will be a queen to me..

Two Balloons

I brought two Valentine balloons home for my two little valentines yesterday afternoon. I never thought a balloon could bring so much joy to someone...Wouldn't it be wonderful if we could all get so excited about a balloon? For us it seems to take so much more to bring us joy...kids have the power to show us how it can take so little to make us happy if we allow it...Those same two balloons also gave my kids intense grief last night. Carley ended up popping hers somehow and she just couldn't get past that her balloon was gone...I sort of share Carley's feelings right now only my grief is a bit more real in the whole scheme of things. She just wanted to replace that balloon with a new one that wasn't broken. Wouldn't we all love to do that for Aubree? I would love nothing more then to fix her heart and to fix every other problem that she is facing...I would love to make her perfect again...unfortunately just like the balloon the only way to fix it would be to replace it..I don't want to replace Aubree...she can never be replaced because she is perfect and beautiful and such a blessing to us...How could you ever even think about replacing something so perfectly made? I can sit here and wallow in self pity all day long, but where is that going to get me? I had a very good friend tell me one time about how she looked at her life once she her son was diagnosed with another rare disorder known as Dandy Walker...she told me she kept thinking "why me?" She then started thinking "why not me?" She felt that if God thought so much of her to give her a son who would need the extra love and support she was going to be honored..What an amazing way to look at things...She might be the strongest woman I know, and I am so thankful for her example. Her life is by no means easy, but she is a fantastic mother and she is able to look at the bright side of life instead of always being negative. We need more women like her in this world. I want to turn out like her...

As for me..I think I am going to take joy in something simple..maybe really enjoy the balloons with my kids or maybe just enjoy watching the snow fall outside...Life is full of blessings..we just have to realize that everything we have and every experience we go through is one of them even if it might not make sense right now...

Aubree Hope

How It All Began...

Forgive me...I am new to all of this, and my mind isn't exactly working in the way that it usually is...I am here to tell you our story that is unfortunately just beginning...I have been happily married to my best friend for almost seven years. We started out our marriage wanting to start a family quickly, but God obviously had other plans for us...we tried for about 2 1/2 years to get pregnant with the help of fertility treatments, and then I got pregnant with my first child...We were so excited that our dreams were finally coming true until I lost our first child somewhere between 5-6 weeks of my pregnancy. We decided to try again, and we were blessed with a very healthy pregnancy that resulted in our beautiful daughter Carley who is now almost 3 1/2. When Carley was about 9 months I found out that I was expecting Baby #2...we were very shocked because I was still nursing and because it was so easy! We had another healthy pregnancy that gave us our son Parker who is still to this day one of the best surprises we have ever received! We have been very busy raising our two active kids, and we decided last summer to build a new home in the country. We ended up selling our house very quickly which was a big surprise to us, and we had to move in with my parents...shortly after we moved in we found out we were expecting Baby #3. We were very excited and overwhelmed by the thought of having another one at this time even though we have always wanted three. My pregnancy has been going along really well except for the fact that everyone kept telling me how small I was...which is unusual for me since I always gain a lot of weight! We went in for a routine ultrasound at around 27 weeks just to make sure everything was ok. This is where my nightmare all began..

I had to go in the room all by myself to get the baby's measurements which is standard at our hospital..they then bring the husband in to see the baby once they are finished with all of the measurements. The ultrasound tech. was taking a really long time, and then she said she needed a few minutes before she brought my husband back...15+ minutes later I am completely freaked out because she has not returned...She finally returns and brings the radiologist in. I watched in horror as they explained they needed to look at the heart a little bit better..in the meantime they tell me I have extra fluid, the baby has a cyst on his/her brain, the umbilical cord has one artery instead of two, and the baby is measuring really small...I am all by myself and horrified that something could be wrong..they of course can't give me any more answers because it is beyond their expertise. We end up being scheduled for a Level 2 ultrasound in Pittsburgh with a Reproductive Geneticist. We have been praying like crazy that all would be ok for this poor baby, and that they were not able to see things very clearly because the baby was being so active. We luckily got in for the ultrasound rather quickly..about a little over a week later. We met with a Genetic Counselor first who took all of our information and family history..we both have clean bills of health in that department! We discussed what they would be looking for, and she answered all of our questions before we went in for the ultrasound. We went in and got to see the baby in great detail..in fact we even got to experience some of the ultrasound in 3d which was a new thing for us! The baby was beautiful and perfect in every way...The doctor came in and looked at everything with us, and she explained in great detail what she was seeing...The great news was that the cyst was gone, and my fluid level was back to normal...The bad news was that the heart looked like it was not formed correctly, the baby might possibly have a rocker foot, and the baby definitely was missing a part of the brain that sends signals back and forth from left to right. They felt that we should go see a Pediatric Cardiologist to see the heart more clearly, but they also felt like we would benefit from Amnio...I of course could not even think about doing that because it would not change the rest of my pregnancy..I also didn't want to take the chance of losing the baby at this point because he/she was so small. We were then introduced to a diagnosis that you never want to hear as a parent..Trisomy 18. We had no idea that this might even be a possibility for our baby since it is so rare, and we were told the only way we would know for sure is to do the amnio or wait for the baby to be born. We opted to go see the Cardiologist first to see what they said about the baby's heart. We left the office in shock and completely horrified that our child might not live due to the diagnosis they suspected. We spent that day and most of the next just walking around in a fog until we saw the cardiologist on Wednesday..they needed to see me right away I guess. I was assuming that meant that the baby's heart was not good. We went to Pittsburgh again (this is about an 1 1/2 drive for us) on Wednesday for the ultrasound of the baby's heart. The Cardiologist was not exactly the most personable person in the world. I would think that since they work with children they would be! She didn't say much as she looked at the heart, and then she got a bunch of diagrams to show us what was wrong. We found out that there are four main problems with the baby's heart that would require 3 major heart surgeries. The first would have to occur in the first week of life, and there would only be about a 50% survival rate...The baby had to weigh at least 5 1/2 pounds, be full-term, and the one valve that was small already would have to be bigger because the other valve was not working at all. If any of those options didn't pan out the baby would have to have a heart transplant..not really likely for a newborn..She recommended getting the amnio because she also suspected Trisomy 18..the baby's ventricles were switched too so that made things a bit more difficult. We left that office knowing we needed to do the amnio because we were told our own doctor could deliver the baby at our hospital if in fact the baby had Trisomy 18 because there is nothing that can be done to save the baby. My doctor is such a wonderful man, and I couldn't think of anyone better to deliver this baby than him since he himself lost a child to childhood leukemia..I thought he might be able to help me get through this.

I went away for the weekend with my mom and daughter to go visit my sister and her girls in Chicago to get my mind off of what was to come. We ended up getting a huge snowstorm at home so we couldn't get home on Sunday because they canceled all of the flights into Pittsburgh (yes I was back in Pittsburgh again). We decided to drive the 9 hours home so I could make my Monday amnio appointment in Pittsburgh. Mike (my husband) and I drove back to Pittsburgh for our appointment at 1:00 to do the amnio. I wasn't really scared of the procedure itself..I was more scared of the outcome I guess. They explained everything that they would do, and they also made it very clear that I was doing the best thing for myself and for the baby by doing this test. We had decided to find out the sex of the baby with this pregnancy since we didn't know how long we would have this child with us. This was new to us since we never have found out before. The ultrasound tech went straight to that area and took a picture for us and told us it was a girl. I was not at all surprised. I knew it was going to be a girl. Her name is Aubree Hope...she has my initials. The doctor actually ran an extra test for me that would give us results in about two days which is much shorter then the usual 2 weeks. I was relieved that we might know for sure in a shorter time frame. We left that appointment with several of our questions answered, and we tried to keep our mind off of things. I got the call around 11:30 on Wednesday morning that my daughter did in fact have Trisomy 18. I knew in my heart this was coming, but I was still holding out hope that she might just have a bad heart. I cried for most of the day, and I tried to make sense of this mess...she was going to die, and now I just had to wait for when that might be. She is still so very much alive right now, and she is as active as ever. She is such a fighter, and I hope she fights until I get to meet her alive.

This is where I am now..I go between being so thankful for her every movement and for the time that I have already shared with her to breaking down whenever I remember she is probably not going to come home to her new room. She is such a blessing to us, and she has taught us so much about life already. We learn that we should never take any day for granted because you never know when it might be your last. Aubree has really made that real to me. She has also taught me to love my children even more...never take anyone you love for granted. I am also looking at this in this way...she must be really special if God is ready for her to come back to him already. I am a firm believer that there is a reason for this even if it doesn't make much sense now to us. I am not angry about it either. I am just sad that my time with her is going to be short. I am writing to celebrate her life and to let others know about this rare chromosomal abnormality. I have learned so much about it already, and I know I still have so much more to learn. I go to bed each night and I wonder if tomorrow will be my last day with her..she can die at any time, and most of these babies die before even reaching their due dates unfortunately. Her official due date is April 24th. Everyone keeps asking me how I am getting through this..the only way to put it is my faith. God has been holding me up, and he has been reminding me every day of what a gift life is. I hope that I get to hold my daughter alive, but I know that God is in control so his will be done. I love my little girl so much already, and I just pray that she does not have to experience any pain. And now our journey begins....