Bursting into Spring!

I originally wrote this on 3/25/2010 but only saved it as a draft until today.

Ainsleigh and I have taken many walks together. When we lived in Davenport, we would take the bike path down to the park about a mile away. I would push Ainsleigh in the stroller. She was entertained without my help and my mind could wander. After Addie's death, this walk became my therapy. There was a sense of quiet and a break from my little world at home and all the reminders of my life and what had happened. I could just enjoy the blue sky, the green grass, the hum of activity going on around me, the sense of anonymity where no one knew the trauma that had just radically changed our lives. Ainsleigh and I watched Spring burst forth.

There was a section of the path where we passed underneath trees, crossing over a little bridge where the sky was shaded from our view. There in the darkness, all the emotions would swell up...the fear, the feeling of being so alone and so helpless, knowing that no one could really help me heal from this tremendous loss, but also knowing that I had to continue pushing forward, being the Mother Ainsleigh needed, the Wife Tim needed. And my needs, well, I didn't even really know what they were. As we walked beneath the trees, I found myself crying out to my God. Asking him why this had to happen, feeling completely exposed to Him, letting him see my tremendous grief and its impact on my heart. It was as if I had been stifling my screams of pain, but there I let them go.

As time passed and Spring turned into Summer I found myself looking forward to that section of our walk. I started to feel God's presence and peace under those trees and I felt him whisper on the breeze, He knew my needs and the desires of my heart and He would be my strength. I remember one especially difficult day when I felt so broken, we entered through the trees and hundreds of little white butterflies (moths?) flew towards us. It was so beautiful! I will never forget that feeling, the peace and the privacy. It will always be special to me.

Now we have moved away and I have thought a lot about our walks and leaving that place, that section of our walk where I felt God's presence so strongly and the sense that Addie was looking down on us from Heaven, letting us know that she was full of joy and peace and that she knew we loved her.

Last week we were driving to our new home in the country. I realized that there is a section where the tops of the trees cross over the road and the road curves beneath them. I remembered how beautiful it looked there in the fall as I drove through the shade. It brought back memories of our walks on the bike path and those moments in the shade. It was a beautiful day and the air smelled strongly of Spring.

I remembered also, how the day after Addie died, three years ago, we were leaving home to attend to the planning of her funeral feeling like it was all so unreal. As we walked outside we noticed that the daffodils had bloomed. Many people commented on it, how beautiful they were and how they weren't there the day before.

It spoke volumes to my heart. Just as Spring was bursting, my baby girl's soul was bursting forth into Heaven! I imagine it with a beautiful bright light, the singing of angels, and tremendous joy that she is with her heavenly father for eternity. It was three years ago, but I remember it as if it was yesterday. And every Spring brings with it reminders. They are semi-sweet in many ways. But it is amazing how God provides moments and places where we can remember them peacefully. I am so blessed that I can always associate my daughter's entrance to heaven with the blooming of the daffodils.

Imperfect.

December 4th, 2009 is quickly approaching. It seems like it keeps coming up in conversation for different reasons and I am ashamed that I have to think to myself, "December 4th...hmm...there is some significance to that date. What is it again?" Then I realize that it is my daughter's birthday. Oh, and it is painful because, as you know, she will not be present to celebrate. No candles. No singing. No birthday cake. I try to put off thinking about it until the date actually comes because somehow I always feel like I only have permission to grieve all over again on that actual day...as if I don't grieve her loss regularly.

One week from this upcoming Friday, on December 4th, it will be three years to the day that our precious Addie arrived by emergency c-section. I heard her cry for the first time from across the room, where she lay surrounded by a team of neonatology experts. It sounded like the tiniest kitten meowing for its mama. The doctor brought her to me, wrapped up with her little hat on, eyes wide open trying to take in the bright lights, in all her beautiful, beautiful glory. A tiny 4lbs worth of breathtaking sweetness, smelling of new baby. I didn't know then that she had red hair under her hat. I was only able to look at her for a few moments. I felt peaceful relief that she was here and she was safe. She was whisked away to be cared for by someone other than me. I did not know then, that we were in no way out of the woods or that my turn would come to care for her and it would be amazing. But it would end four months later.

I am shocked that it will be 3 years. She would be three years old.

Last week, I listened to a speaker discuss how she felt unusable to God after going through the difficult process of having a child diagnosed with autism. She said she felt "out of order." Feeling as if she was on the verge of a mental breakdown, she said she asked God if she would ever be able to be used by Him again. I cried as she spoke, realizing that was exactly how I have been feeling. It's been three years, God. Will I ever be fixed? Will I ever recover? Will I ever be the perfect mother and wife, who doesn't cry so regularly or feel so beaten down, but smiles and keeps everything in perfect order? Can you use me after so much has been broken and in disrepair for so many years?

Three years ago, I celebrated Thanksgiving with my family in my most comfortable maternity shirt, feeling my precious child dance inside my belly. I knew that day, that she would be born soon, but I could not have known how special that memory would be. It would be our only Thanksgiving together.

So this time of year, I feel nostalgic. Even though I am further from her in terms of time, this year I feel somehow more attached to those memories, and less confused. Yes. I am out of order. There are things that need to be worked out. There always will be. There is not a magic pill I can take that will make me better. I have lost a child and there are still many moments that I am taken over with grief. Those moments come often and without prior notice-in the car, in the middle of the night, in the middle of a church service, in the middle of a conversation (even with a stranger but more often with my sisters or my Mom). But I am realizing that many of the people that I meet who have the most depth and the most empathy are also in the state I am in; that of being or having been "out of order." So there is hope! Maybe I don't have to be made perfect. Maybe there is some sort of wholeness, or even beauty, in the pain and in the brokenness.

I am finding peace with what has happened and the person I have become, complete with my imperfections and even in my state of feeling out of order. In some ways, even my imperfections bear the fingerprints of my Creator, as He shapes me and molds me into that which He has created me to be. All these experiences in my past, the good, the bad and the painful are part of who I am. I feel much less apologetic about it. This Thanksgiving I am thankful for God's grace and love. He walked beside me through the birth and the death of my beautiful baby and He continues to use me. Even when I think I am out of order.

"Go down to the potter's house, and there I will give you my message" So I went down to the potter's house, and I saw him working at the wheel. But the pot he was shaping from the clay was marred in his hands; so the potter formed it into another pot, shaping it as seemed best to him...Like clay in the hand of the potter, so are you in my hand...Jeremiah 18:2-6

Moving

I can't believe it has been so long since my last post. We are so blessed to have our third child now. It as a little bit surreal, as Paige surpassed Addie's age, to think about the state of our family and the loss that we feel, at least in some small way, everyday.

I think that in some ways, I have come to terms with knowing that the pain and uncertainty will always be present, just under the surface. It will probably never go away completely, I just feel a little more numb. Sometimes it presents itself through fear, especially at times when Ainsleigh gets a strange bug bite and I worry, or when Tim is running late and I wonder what could be keeping him. My mind tends to travel to the worst possible scenario. But most of the time, I feel the pain by wondering and what could have been. I think about her red hair and how it turned blond, then brown, the fell out leaving her with a very stubbly little head that rubbed against my arm as I held her and I consider how, in a few months' time, I could have a three year old in the mix.

Honestly, it always seems as if I have three daughters, even though one is not physically present. I sometimes imagine the three of them, Addie in the middle, and what they would be doing together, what kind of trouble they'd be getting into.

Tim and I just closed on our first house this week. I have been slowly packing. My Mom packed up our bookcase and I looked at it to see that she left one thing unpacked. Little Addie's ashes. I am reminded that it is real. She came and she is gone. I will move her little wooden box of ashes to our new house. I will wish with all of my heart that she would be coming there in person, feeling the breeze on her face. I will place that little box in a new place and consider how much love I had for a baby I may have only known for a few months. And I will wonder what it all means, why I carry this little box with me when it is just dust, it is not my baby. But I will know, that it is sacred.

She is in Heaven rejoicing with the angels, radiating peace and joy. As I carry on with my earthly attachment, she is watching us from Heaven. I only hope that she will sense our joy and know that no matter how much space and time separates us, all we have in physical terms may be a little box of dust, but in our hearts she is coming with us.

Today

Today brought a few tears to my eyes. Ainsleigh and I were sitting in our sewing/computer/creative room. I was working on a new baby quilt for "baby Paige" and Ainsleigh was painting at her little easel. She had left the room and returned exclaiming, "Mommy, I've been blowing eighty kisses to baby Addie in heaven." Then a few minutes later she began describing to me how she misses baby Addie so much. This turns in to something I haven't really heard from her. She got really upset and asked asked why baby Addie had to go to heaven and why she had to have a bad heart. I gave all my typical answers and forced all the positivity I could, which usually works, saying, "But she was amazing Ainsleigh. We thought we'd only get a few days with her but we got 4 months and that's a long time. We were really blessed to spend that time with her, and you were there with me everyday. We spent every moment with Addie and you were right by my side helping me take care of her." But ultimately, I couldn't answer her why's. She wanted a better answer, or maybe she knew that there wasn't an answer.

I finally left it by saying that even I don't understand, and I ask God why this happened quite a bit myself. I told her we can only be happy that we know where Addie is and that she is happy there, and that we know someday we will get answers to these questions. Ainsleigh wasn't thrilled with that answer, but it seemed to make sense to her somehow. She was only disappointed because she didn't think Addie probably got to paint on an easel in heaven.

Maybe she is painting in heaven!

It is hard not to have answers and I asked Ainsleigh why she was thinking so much about these things today. Maybe it is because of all the talk of the new baby and wondering if the same thing is going to happen, or if this baby is going to stick around. I worry about the same things. I hope I'm doing the right thing by Ainsleigh. I try to as honest as I can. Hopefully that's enough!

His Faithfulness

I've wanted to post an entry I had written in my journal just a few weeks before Addie was born. We were scheduled to have another level 2 ultrasound and another echocardiogram at St. Francis. I was 35 weeks pregnant. At this point, all we knew of Addie's condition was that she had a heart defect called tetralogy of fallot and that it could be a symptom of a chromosomal defect called a 22q deletion. We had no idea that it could be terminal. I wrote this entry a few days before this ultrasound. I was in a state of complete distress, my heart would race and I just couldn't stop crying in anticipation of what we might find out. I was so afraid to see signs of a chromosomal defect and, up to this point, every visit had brought small signs (nothing concrete) that maybe something more was wrong. The previous ultrasound it had been the possibility of an enlarged kidney and her measurements being 2 weeks behind. There was still hope, but it just weighed so heavily on my heart that I knew I had to bring it to God. It was preventing me from having joy or hope and it was keeping me from letting go and loving my baby. We did end up getting bad news at the appointment. It turned out that Addie was only measuring 30 weeks, her abdomen only 27 and she would be born just a short 2 weeks later with a terminal chromosomal defect.

When I look back and read this entry, I am just amazed at how God was preparing my heart for what was to happen.

November 16th, 2006

"For you created my inmost being: You knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the Earth your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be" Psalm 139: 13-16

"God's character goes into the creation of every person."

As another ultrasound /echocardiogram is scheduled for November 21st, and baby girl's birthday gets closer (along with Thanksgiving and Christmas) I am finding myself getting suddenly anxious and fearful again. I am scared to find out bad news and scared of how I'll handle it. Will I be a good enough mother? I know that this fear and insecurity does not come from God and it is draining me - wearing on me.

Today this verse was running in my head, "...you knit me together in my mother's womb." I had to break out the Bible and get it in its context and entirety. I am just in tears because it is the Truth that I will teach to my daughters, no matter what. Even I can take so much from it. God has designed us with a plan.

I know this fear and anxiety of the unknown is preventing me from feeling 100% happy about meeting my daughter. I am ashamed to admit that. So I am making a commitment to God right now, and to my little girl.

I will be your protector! I will be proud of you and I will teach you to seek strength from God so that you can follow His plan for your life. I will teach you to be thankful because you are blessed. I will teach you, through my example, to trust God and to seek Him in times of fear and when you struggle. I will depend on Him to give me the strength and wisdom I need to be the parent and the teacher and encourager you need.

Praise God for bringing me to this scripture and reminding me of the truth. I know I am not in control but He is. I need to feel safe about falling in love with my daughter! I need to follow Ainsleigh's example - she is head over heels excited about "baby sister." This scripture also reminds me that this is part of God's plan for my life and He will provide me with the tools I need so I shouldn't be insecure.

I can't believe how this has been wearing on me and I will still be nervous about this doctor's appointment, but how wise of God to put it so close the Thanksgiving! I do have a lot to be thankful for! Soon - a beautiful baby!

On Being a Big Sister

"Only be careful, and watch yourselves closely so that you do not forget the things your eyes have seen or let them slip from your heart as long as you live."

Deuteronomy 4:9

We were witness to many miracles throughout Addie's life and one of them was watching Ainsleigh develop into a very loving caregiver and joyful big sister as she worked to understand the complexity of the situation. It is so hard for me to put it into words, how amazing and incomprehensible her love was for her family and her fragile baby sister although she was just two years old.

This picture was taken on March 25th, 2007, only 2 days before Addie died. I've been talking to Ainsleigh a lot about her new baby sister and finding myself and others saying things like, "Are you excited to be a big sister" or "You're going to be such a good big sister!" I always feel the need to follow it up with something like, "...just like you were a wonderful big sister to Addie." Its hard because I know she is already a big sister and I don't want to forget it, because of the amazing big sister she was. When I look back over everything, it is like Ainsleigh has been this constant source of joy and glimmer of hope, keeping us on track and forcing us to be joyful even when it was the hardest thing for us to do. I've always talked about what an amazing big sister she was to Addie, but I'm realizing how much we needed her too and how much she did to keep us, her parents, in check too! I am so proud of her and so thankful to God for providing us with what we needed. Ainsleigh was definitely one of his provisions for us, not only during our time with Addie, but through my pregnancy with Addie, and after our loss she continues to keep us in the moment and hopeful for the future. We always knew she was a blessing, but she has been so much more than that. She is a perfect example of unconditional love and that is what I see and remember when I look at these pictures.

Her prayer for her new baby sister has been, "Dear Jesus, we pray that this new baby will be healthy and strong. Amen." She even interrupted Grandpa, on the day we got together to celebrate her birthday. He started to say a prayer and stopped as we heard this little voice in the background. I looked over to see Ainsleigh's head bowed, hands folded, quietly saying her prayer; "Dear Jesus, we pray that his new baby will be healthy and strong. Amen." My heart overflowed! I was proud, but I was also sort of heartbroken for her and happy at the same time. She has seen so much. She has been on this journey right alongside us. And she has been so faithful and so trusting. We told her to pray for her baby Addie and now we have prayed together for this new baby and she is praying right beside us, and even on her own. Last week, on several occasions, out of nowhere, she mentioned baby Addie. One time, raising her hands towards heaven and joyfully saying, "Mommy sometimes I can see baby Addie in heaven and I can blow her kisses." Then later saying, "Mommy, I bet baby Addie is having so much fun in heaven. I bet she will be so happy to see us when we go to see her in heaven!" Then one night before going to bed, "Baby Addie was so beautiful Mommy! What a beautiful baby!"

She has not forgotten her and maybe she is thinking of her more now as we expect this new baby. She is reminded of her other baby sister. I am really thankful that she is not jealous or worried about her place in our family. Instead she is excited and proud of all she did with Addie and all she will do with the new baby. I opened these pictures and watched the video below with Ainsleigh and I wish I could show you the huge smile on her face. She isn't sad or worried or confused. She seems to understand so completely and I am glad for the memories we have preserved for her and with her.


This picture was taken on Addie's last day on Earth. Little did we know she would be in heaven that night. Ainsleigh had a song she would sing to Addie and I made sure to record it that day. I am still surprised to remember how little Ainsleigh was then. She was only 2 years old and a little of a baby herself. I forget how her little voice sounded. She has always seemed so grown up to us. Addie was really suffering this day and it took all I had not to really break down in front of Ainsleigh, although it would be nothing new for her to see. I felt like God gave me some peace in these moments even as I knew in my heart that our time together was ending.

"I will always remind you of these things, even though you know them and are firmly established in the truth you now have. I think it is right to refresh your memory."
2 Peter 2:12-13

And how we thank you God for these memories!

Introducing little girl #3

Thanks so much for all of your prayers and well wishes! We had our ultrasound on Monday and were pleased to see that everything looked normal. We got a good look at the baby's heart and everything looked healthy, we saw all four chambers pumping away. Tim wasn't too disappointed to learn that his prediction was wrong. No boy for us! But we're really happy about another little girlie. Now we've just got to come up with a name. This will be a challenge because we thought we'd exhausted them all in finding Ainsleigh and Adeline. We've got to keep looking, but there aren't any frontrunners now.

It is hard to process that there will be a new little girl in our home that Addie will never meet here on Earth and who will never meet Addie. Somehow, when Tim had me convinced it was a boy, it seemed easier to separate Addie from the new baby. But having another girl makes it seem strange, not like I am replacing Addie, but it brings up more things that remind me of her, especially since their due dates are at the same time of year. I can't imagine what it would be like if Addie was still here and we had THREE little girls to chase around. We go through our days just accepting the reality of what is but it really seems like there is this hole where a life and all of its possibilities are missing. It's hard to wrap our minds around and it is almost confusing, how time just keeps going by, pushing us further away from our time with Addie and now into a future with another little girl. I'm glad that one day it will all be revealed to us when we see Addie again. It is kind of neat to imagine Addie watching us from heaven and rejoicing with us as we get to know this new little life!

Ainsleigh is really happy. She has told me many times that she is going to help take care of this new baby sister. I can't wait to see them together. She was such an amazing sister to Addie and I know she will be the same way with this baby, only now she will be older and even more capable to actually help. I'm so glad we'll have some time together before Ainsleigh starts school, that all of us girls can spend time with each other. Ainsleigh is preparing. She told me this morning that the new baby can sit next to her in her carseat in the car so that she can make sure she's okay.

We're realizing that this is really going to happen now! I'm almost 21 weeks. The baby is moving around more and more everyday. Even though I've done this twice before, it still amazes me!

Fear

Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these."

Matthew 19:14

Dear little Addie, I am so happy to know that you are safe and joyful where you are!

Addie is continually in our thoughts, especially in each step in this new pregnancy. It is bringing up so many memories that we had forgotten about. We have accepted that losing her is something we will never completely recover from and we probably shouldn't. I have been thinking about the fear that has set in since our experience and I just want to say that it, in no way, determines our feelings towards little Addie! We still love her, are amazed by her, and are thrilled that we were blessed with the opportunity to be her parents. This fear we are facing is of our own creation, not caused by Addie. With that said...

We are approaching the halfway mark of this pregnancy, 20 weeks! It seems so hard to believe that this is my fourth pregnancy when I used to wonder if I'd ever have children at all. I think there was a part of me that couldn't imagine life without them, but there was also a part of me that was afraid because I didn't have the patience or even the desire that other people seemed to have instinctively. I know I could have let that fear determine my future and there are many times in the past that I did exactly that.

Tim and I were talking a few weeks back and came to the realization that it is this sense of fear that we have allowed to guide us, rather than hope or faith. There is so much fear in the unknown, of what COULD happen. Before having Addie, we knew fear was something that could hang over us if we let it and although there were times that it seemed to be a very present force, it didn't take away our joy.

Now, all of that has changed and we can definitely sense the point at which it all started to happen; sitting in the room, watching the sonographer spend way too much time looking at our baby's heart. Then the aftermath. And now we live as though we are just waiting for the next bad thing to happen instead of living and trusting in a God who has been so faithful.

I am so glad that we can at least acknowledge together that we have a real struggle on our hands. It is a very active battle against the tendency we're having to let fear dictate and reign over our lives. I just thought, after all of this time, that things would be back to normal. They sort of are normal, but the definition of "normal" is different. The new normal is full of anxiety, hesitancy and the need for constant reassurance.

It is a scary thing to realize that there is something in your life determining your choices that isn't rational or truthful. It is pushing out optimism and joy and surrounding us with negativity. We have concluded that it is something we must take seriously and pray against everyday, sometimes many times a day!

I could also list the many good things that have come out of our experience with Addie. Fear is definitely not the only thing we have taken from it, but right now it is the most consuming. Please keep us in your prayers and we prepare for our "big" ultrasound on Monday, June 30th. Pray that we will be peaceful and not robbed of our hope or our joy because of fear.

"So do not fear for I am with you;

do not be dismayed, for I am your God.

I will strengthen you and help you;

I will uphold you with my righteous right hand."

Isaiah 41:10

or like another amazing woman wrote on her recent blog post

"Because even if He killed me...I'd keep on hoping..."

Job 13:15

As we begin this new pregnancy

So we are 16 weeks pregnant and very happy to be hopeful for a new life, a new joy. It's been a very hesitant journey so far though, as it is for most parents who have experienced loss. I ran across this poem today and I'm not sure why I want to share it, but I just want to have it here to keep. I have a doctor's appointment on Tuesday, it is also our 8th wedding anniversary! We will schedule an ultrasound at this visit. The ultrasound will mark the same point in my pregnancy when we had our ultrasound with Addie where her heart defect was found. Please pray for us to have good news.

A Different Child by Pandora MacMillian

People notice
There's a special glow around you.
You grow
Surrounded by love,

Never doubting you are wanted;
Only look at the pride and joy
In your mother and father's eyes.

And if sometimes
Between the smiles
There's a trace of tears,
One day
You'll understand.

You'll understand
There was once another child
A different child
Who was in their hopes and dreams.

That child will never outgrow the baby clothes
That child will never keep them up at night
In fact, that child will never be any trouble at all.

Except sometimes, in a silent moment,
When mother and father miss so much
That different child.

May hope and love wrap you warmly
And may you learn the lesson forever
How infinitely precious
How infinitely fragile
Is this life on earth.

One day, as a young man or woman
You may see another mother's tears
Another father's silent grief
Then you, and you alone
Will understand
And offer the greatest comfort.

When all hope seems lost,
You will tell them
With great compassion,
"I know how you feel.
I'm only here
Because my parents tried again

a video

I just had to post this video here because it means a lot to me. It's a reminder of how strong Addie was and all she accomplished. Every time I watch it, it brings a smile to my face.

One Year Without Her

Today marks one year since our Addie left us. I thought it would be a difficult day and I’ve been feeling almost guilty for not thinking of it more introspectively. Then I realized that I’ve been missing her and thinking of her everyday and that one day isn’t sadder or more significant than the other. This day also marks the most difficult moment for me, the moment when I actually watched her life leave her body and had to let someone take her out of my home, knowing that she would never come back.

Those who talk to me a lot know that I don’t concentrate on that moment because if I do, it just seems to sum her life as being short and ending. That seems so inadequate because her life was the most significant life I have ever witnessed. My pregnancy with her was probably the most stressful thing I have ever gone through. I felt that I was treated like I had a disease rather than a baby. But our time with Addie, although it was a rollercoaster, was just amazing. It was like witnessing a miracle everyday and wanting so badly to scream it all to the world, but being alone, stuck in an apartment while the world just passed by unaware.

It seems like so much longer than a year to me. It feels like it has taken so long to feel normal again, and I’m not sure I ever will get out of this state of shock. I have been given a whole new perspective on life and how precious and awesome it really is and how seriously important it is to treat it as sacred. That is just the most basic principle our society MUST maintain and protect if we want have true love and empathy in any capacity. I also have a new perspective on disability and love, our love for our children and how selfless it can be and God’s selfless love for us, no matter how imperfect or wounded we are, even when we cannot love ourselves. Let me tell you, finding out you have a child with a disability is difficult. BUT. It is not the end of the world. It does not change how much you will love them, how much joy they can give you, and how much they will love you. It does not mean they were created without purpose or by accident. They were born to live, however long their life may be, and their life has just as much purpose as yours or mine. We cannot see, through our eyes, the true value and meaning of a life and what God has intended it for.

Today I miss my daughter. I tear up when I hear Ainsleigh tell strangers about her "beautiful baby Addie" who "passed away and is in heaven." Then I also laugh when I remember her hugging Addie close and saying, "Beautiful little tiny baby fingers, beautiful little tiny baby toes, beautiful little tiny baby feeding tube." How awesome that her love was without condition! I am so proud of the big sister she was! I am proud of my husband who stood on his principles throughout my pregnancy and Addie’s life and also was amazingly strong at moments when my strength was gone, like when I was given the news in the hospital and didn’t think I could even visit my daughter in the NICU again, knowing I was going to lose her. We are all so much stronger than we think we are, I have to remind myself of that! I am proud of my family whose love for Addie just overwhelms me to this day. They were so immediately able to see past her potential problems and love her for the amazing child she was.

What an awesome little girl. What an awesome life to witness. There were sad moments but to many more sweet moments. Thank you God for giving Addie to us! We are so lucky to have met her!

Dear Addie,
Today I remember the day you left us. Wow, how we miss you. We wonder what you would look like if you were still with us, what would you be doing? You were so strong! You wanted so badly to live and we were so blessed because of that. I am so happy to know that you are with God and that your understanding probably far outweighs my own now. It is hard to comprehend. I am remembering the day you left, but I mostly think of the day you came and the months that you LIVED! You have a big sister who is so proud of you. She tells everyone she meets all about your life. On this day, I thank God again for the wonderful masterpiece he made in you and for giving us the gift of your life. We just can’t wait to be reunited with you again, and free from our own imperfections! Until then, we will continue to blow you kisses as Ainsleigh does quite often. It truly will always feel like a member of our family is missing. I love you, my amazing child!

Thanks Mom

I've been thinking about how Mothers are possibly the only people on Earth who will ever appreciate how unique and special we are. Few others care to hear boring stories about how sick you were last week, that funny thing you said when you were little, that one time you....blah blah blah. Few others think of you and get a true feeling of appreciation for your entire person; what makes you laugh, what makes you cry, what inspires you, what brings out the best in you, and what brings out the worst. 

I can't even imagine how other people could look at Ainsleigh and just dismiss her as another little girl. Can't they see how amazing she is? How funny? How creative? How smart? How intuitive and perceptive? Maybe they do, but there will probably be few people in her life who know her like I do. Hopefully I'm wrong, but I think maybe that's just the way it goes, hence God's design for mothers in the first place. As mothers, we know how amazing our children are and we want so badly for them to not be dismissed or overlooked, but to be appreciated for the unique people that they are. 

I've been thinking about this and how it relates to Addie. Maybe the reason I created this blog is to attempt to describe her as something more than a child with a terminal birth defect. She wasn't just a "sick" infant with a short life. There was so much more to her. I don't want her to be defined by the words "trisomy 13" or "incompatible with life." She had beautiful dark blond-red hair and dark eyes. She liked to hold on to the finger of the person holding her or her blanket. She smiled, she looked up at us earnestly, she cooed, she kicked, she nestled her little head into you as you held her, she sucked on her pacifier and her thumbs, she cried when she was hungry (in between sucking on her little hands in hopes they might actually be a bottle), and when she slept she looked so beautiful, peaceful and healthy that you would never have known she had anything wrong.

I know Mothers aren't perfect. We are still selfish at times and we don't always know what's best for our children.  It is the most difficult struggle to achieve that balance. But I think it is my instinct to want Addie's life to be acknowledged as something more complete. It is just so important to me. I guess none of us want to be defined by our limitations, especially those we have no control over. I've just been thinking about that a lot. When I say to people, "My daughter passed away because of a chromosomal birth defect," I just feel like there's so much more to say than that. Hmm. I'm going to work on that one, Addie's life in two sentences. I'm not sure it's possible.

This morning

This morning Ainsleigh says to me, "Mommy, when I get a big house I will get a new baby and a new doggie, okay? And I will call the new baby 'Addie Jo' just like my other baby."

I always wonder what she thinks about everything that has happened. Comments like these, so out of the blue, always give me a little insight!

We went camping this weekend for my Dad's 60th birthday. It was so much fun and we met another little Addie while we were playing on the swings. Maybe God knew that I was missing her with all the other cousins around. Or it might just be a coincidence. ;)

More Addie

I've been thinking about Addie, as always. I'm not sure if I shared this with all of you, but it's worth sharing.

When Addie came home, we prayed she would just make it through the two hour drive from Peoria to Davenport. We were so wary of taking care of her. We didn't even learn how to tube feed her until the morning before they sent us home with her in a tiny, tiny "carbed" (the carseat equivalent for babies under 5 pounds, I have photos of our journey here). The expectations we had of her were so small after hearing that the average lifespan was less than a week. I sat by her in the car, constantly checking to see if she was still breathing or having any difficulty. She seemed like a porcelain doll, so fragile and tiny. She was two weeks old. I didn't know her. We spent as much time in the NICU as we could with Tim having to return to work and me trying to make life somewhat normal for Ainsleigh. I loved her intensely, this child that I had dreamed about, made plans for, felt moving inside me. But I did not have time to bond with her as I had with Ainsleigh when she was born. I didn't know the noises she made and the meanings they had. I didn't know what comforted her or how she smelled without the smell of purell dominating the air! Addie was locked inside a little isolette, inside a little room, being taken care of by nurses who seemed much more prepared to do the right thing for her than I, the non-medically minded, emotion-driven mother. I was afraid to touch her or even pick her up without help. She had tubes everywhere and rarely even opened her eyes. To say that I had little faith in my own instinct, and that I didn't know what to expect from her are both huge understatements.

We had to sign legal documents along with our doctors for both states of Iowa and Illinois, called "DNR (do not rescusitate) orders." We were told that we must carry these papers with us always. In case Addie was to die in transit, or even at home, these papers would essentially clear us from any legal responsibility for her death. They stated that she had a terminal illness that was (again the phrase) "incompatible with life." Having these orders made us feel awful but we couldn't be released from the hospital without them. Obviously, we made it home. Why is it so hard to remember that we are not in control?

From there we had many short term goals. "God please keep her here until Christmas...then New Year's, then my birthday, then Easter." I really, really wanted to celebrate Spring with her. I wanted to take her outside and show her all of the beautiful new things that had bloomed, just like she did! I did get to take her to the local park just a few weeks before she died, on an abnormally warm March day. We had been stuck indoors all winter, rarely leaving the house. I am so grateful for that one day she spent a few minutes outside at the park with her big sister.

Addie's heart deteriorated quickly as she began to gain weight. We were taken by surprise. Everything happened so quickly. She was continuing to grow and develop even the day before she died. She was talking more and seemed to be reacting to noises and changes in light. She was holding her own pacifier and interacting with Ainsleigh more, she even found her thumbs.

The day before Addie died, Ainsleigh and I had noticed that the spring flowers around our area were growing, but hadn't bloomed yet. The morning after Addie died, we left to make arrangements at the funeral home and as we pulled out of the driveway we noticed the daffodils had bloomed! What a cool sign from God. It was so comforting. Addie came before Christmas and left before Easter. She was so amazing and something about that timetable is really comforting. It seems like throughout our whole experience with Addie, time just stopped for us. Then Easter came; that cliche time of new beginnings. And it was time for Addie's new beginning, as we explained to Ainsleigh, in her "new body" that knows no sickness or suffering. How wonderful that I can associate that time with the blooming of the Spring flowers and the celebration of Easter.

I am sad she isn't here for me to love and hold and watch grow, but that sadness pales in comparison to the gift that she was to us and the gift that her memories continue to be. I feel almost speechless when I try to describe her and all that she accomplished. I try not to dwell on her loss. I take hope in knowing that she is with the One who created her as He created us all; not by mistake. Just as she was meant to be.

So overwhelming.

Tomorrow Tim is picking up Addie's ashes and bringing them home.

I'm going to be honest.

Sometimes I feel terribly weak and intensely overcome with fear. I couldn't have an amnio for fear of bad news. I was afraid I couldn't take care of Addie when they told us we could take her home. I was scared when I thought about how I would handle her dying in our home. I was scared to hold her after she died. I was scared to let them take her from our home after she died, knowing she would never come back. I was scared to hold her after her funeral. I was scared of the moment when they had Tim and I cover her and put the lid on her tiny casket as we carried her out of the church. I was scared that I would remember her that way, instead of beautiful and alive. I was scared to make decisions as to what to do with her precious little body. I was scared to imagine her alone, cold, in the ground but I was scared to imagine her little body being cremated. Once we made that decision, we were both too paralyzed with fear to decide what to do with her ashes, or even go get them for that matter. The funeral director assured us that it was normal and that we should take our time, but seriously. How awful is that? I am her parent, I have loved her so intensely. Why is this so hard for me? How could I leave her at the funeral home for 3 months?

I can't believe I am posting this, but I realized today how much strength I need to get through this. Other parents go through this and they don't put it off. Why have I had such a hard time? When I look at the list of my fears, I realize that I made it through all of them, and most things came naturally to me as Addie's mother. Still I'm so scared of that moment, when Tim walks in the door holding my baby's ashes in a tiny little box. There is a part of me that is really okay with it. I feel like this is where she belongs. But will the realization that it isn't really her be too much for me? What do I do with that little box? I am afraid of the closure this will bring. I miss my baby so much.

If you can, please keep us in your prayers tomorrow. I know it will happen and we will get through it, but I'm so overwhelmed.

Maybe I'm crazy but...

Sometimes I find myself coming to my own page just to see the pictures of my beautiful little baby girl who is gone and watch my own videos of her. It reminds me of how sweet and how alive she was and I am overwhelmed with a feeling of joy and love. I always find myself smiling. Then it always seems to changes to tears and the sense that I can't even understand the loss I feel. So I close my eyes, rock in my chair, and try to imagine her still in my arms, her little finger wrapped around mine, making her little noises and little movements. With my eyes closed, I remember how her skin felt, how she smelled, the shape of her head, smoothing down her strawberry blond hair.

I miss her so much and I feel so lucky to have gotten to know her. My daughters are such gifts. I was

 putting Ainsleigh to bed the other night. We were reading books on her floor and she turned to give me a hug. That hug, the feeling of those little arms around me and her hair in my face, just reminded me of how lucky I am to have this cool little person to love and be loved by. Nothing can ever replace that hug. It's awesome. So I've made my decision. Having children is definitely worth it. It's hard work, but the relationship I'm establishing is indescribable.

Today Addie would be 6 months old.

We miss her so much!

It's been a month

Addie has been gone for a little over a month now. How can it be? In some ways it seems like it cannot have possibly been that long, but in other ways it seems like ages ago. It's been a hard day today. I'm not sure how I'll ever accept her absence in my life. I know I cannot put into words how much my heart aches for my daughter, for the future that might have been, but mostly for chance to hold her close and comfort her; just be her mommy. But it helps to come here and write it out.

Today I ran out to pick up some food and saw a little girl and her father running back into the restaurant to get something they had forgotten. They stepped in front of me and picked something up off a table. As they turned, I noticed that it was the little girl's name tag, probably from preschool. I glanced at it and read the name, "Addie." My heart skipped a beat to see that name. I felt like I should say something. I wanted to say, "I have a little girl named Addie," but I hesitated. It's that weird feeling of knowing I have Addie, but I don't really have her. Then, I hate to accidentally burden a stranger with my loss. I don't really believe in coincidences lately, so I really think it was a precious little reminder of my daughter and her existence. She was a person, she will not be forgotten.

I wanted to post some of the things that were said at her funeral, for those of you who may not have made it. I was so proud of my family that day. Carly did a beautiful job singing and Chris and Meghan spoke. I know it was so hard for them, but it continues to mean so much to me.

My brother, Chris wrote and read the following:

Life is Precious

The gift of a child is something that is taken for granted by a good portion of society today. But that is not the case in this family. We take great joy in every little blessing that God gives to us. Personally I have been blessed with some fantastic family including some great uncles. And I have looked forward to each time that I get to be called Uncle Chris. I just love it. I know that we all looked forward to the day that Adeline would be born. I could not wait to get the chance to hold her. The chance came a little earlier than expected. And she had more health problems than were expected. Still she was here, and she was a beautiful little girl. I am so glad that I got to hold her. That has been such a blessing to me. She held on to this life longer than the doctors expected. She gave me the chance caress her and look into her eyes as Uncle Chris. And I loved it. It was hard to believe that she had such serious health problems. She seemed so healthy in so many ways.
There was some question of how well she could hear. But the last time that I got to hold her something happened that really struck me. I was holding her and she was looking in my general direction, but she was not looking directly at me. So, I was trying (in my best "Uncle Chris way") to get her attention. I was saying her name, telling her what a pretty girl she was, and even making baby talk. But I could not break her attention from the light next to me. Then Stephanie (who was standing behind Addie) spoke quietly to someone else in the room. When Stephanie spoke Addie immediately arched her back, lifted her head, and turned her eyes toward her mother. It was the voice that she had heard from the time that she was held safe and secure in the womb. It was the voice that had soothed her, that had calmed her, and that had spoken to her with love. I know for sure that she could hear because she heard and recognized her mother's voice.
In this time of grief and loss it is hard to understand why this would happen. Why would she have to struggle so hard in this life? And I don't know why. But there is comfort in knowing that even though we still suffer here on earth she has heard the voice of her heavenly Father as He has called her name. And He is holding her close to Him. He is telling her how much He loves her, and how beautiful she is. He has healed her, and she will know no more suffering. She is in the arms of the Everlasting Father. And heaven's light shines a little brighter with her presence.


My sister, Meghan wrote and read the following:

Stephanie, you know that you and Addie are loved very much. She is the most amazing and powerful addition to the Hatch family and she is one of our defining moments. It is as if all our lives we have been in preperation for her birth. The closeness we have always shared is even deeper now and I would not change how things have played out. The last 3 months have proved to me that she is not incompatible with life...as the doctors have said, she is the most life we have ever had with us. She has rallied love, prayers, support, faith, sacrifice...she has brought us so close to the hope we all must live in...the hope of salvation and a future. Even before she was born I knew that she was going to be a miracle and she was going to have purpose, that whatever all the doctor's words meant she was not going to have to live out what they said. It is amazing to know the impact she has had on lives all over the place, people that we don't even know, that hadn't even met her . She is a part of something much greater than herself, greater than all of us..and God knows her name...it is not Trisomy or Tetralogy to him...it is precious and she is precious. We will just keep praying for strength and for healing and for doctors who love her and are interested in her strength and growth and in treating her like an individual patient. God doesn't expect you to have to fight this alone and be responsible for the outcome...you have an almighty advocate!
I just love you so much...we are all blessed to have family with faith and love the way we do and that is only through God's love working in each one of us and through each one of us. I think Addie is a lot like her mommy...you have both added so much to my life and I don't know where I would be without either one of you! I don't know if you remember Stephanie but I have a clear memory of being about 4 years old and you telling me about Jesus loving me and dying on the cross for my sins and forgiving me. You prayed with me to accept Him as my savior. God has also used used Addie to play a huge part in my spiritual life she has been such a blessing from the start...she has challenged my perception of God and lead me closer to Him and given me a greater understanding of what life is...I knew when you first told me the doctors said she may have some problems that this was going to bring all of us closer to life and the presiousness of what it is. And that we would all love her deeply and find great joy in her! She was going to bring us deep understanding that every life is valuable and purposeful. And even though now there is sorrow and struggle where would we be without her...it is a joy to hold her, to see her beautiful eyes look up at you and feel her fingers grasp tightly around yours. It is a joy to know I get to go up and see her and you all and to see her fight for life despite all odds...that that fight comes so naturally for her! And no matter when the time comes it is a joy to know we will see her someday when we will all be free from the chains and limitations of our earthly bodies and we can dance with her and hold her and eachother and understand what all of this life was for!!!

Stephanie and Tim I don't know what else I could do but love you and be there for you and your children! I love you so much...you know this but Stephanie you are not only my sister but my best friend and one of my greatest encouragers! I just want to hold you both and tell you that you are a wonderful parents and you never need to question how you feel or how you are doing at all this!!

I am so thankful to know my little niece Adeline Josephine... Stephanie said that she was very peaceful when I was around...she would let me hold her while I walked around the house doing dishes or whatever else...something she normally wasn't happy about. I feel special that she would be content with me and even when she was tired and I know she was ready to fall asleep I would start talking to her and she would open her eyes wide again to listen to what I had to say to her. One day she spent almost a half hour listening to me and talking back to me. She always wanted contact with those around her...to hold your fingers with her hands while you fed her or gave her the pacifier...I believe that was her way of telling you she loved you back! I am so proud of the way she proved so many people wrong and kept surprising us with her strength. I am thankful that we were able to celebrate so many milestone with her...every ounce gained and every new development she made. How could I forget the first time they let you feed her in the hospital Stephanie or the time she pulled her feeding tube out twice in one day, I think to get your attention...hello everyone, I want a bottle!!! Her first bath, the first time she held her head up, her first shopping trip at target and even a first day out at the park. She was always so alive and we are all blessed to remember her that way...full of life and growth and love. I am not saying goodbye but instead want to tell her, thank you Addie for being a gift of life to us!! We love you so much and we will see you again soon!!

Daughters

Daughters are just so awesome. I'm sure sons are too, I just don't have much experience with them! I thought Ainsleigh had taught me so much about love, strength, God's love for us, how much I can really give of myself, and how much more depth life can have. Then Adeline came and I have an entirely new persepective on life, on the value each life has. Each PERSON. I never realized the connectivity between all of us, and how much we all need each other and what we each have to give. So many people have helped us throughout the last year and in so many unique ways, some have been through posts and emails on myspace by people I've never even met. Asking for help hasn't come easily for me and I'm not always good at helping other people, but sometimes you really do have to look beyond yourself. Sometimes it even requires ridding yourself of self-consciousness and trusting your instincts, not being afraid to do what you think may help. I'm so glad that so many people did that for us, and weren't afraid of overstepping or persistently calling. We didn't always know what we needed, but amazingly, other people sometimes did.

But even more amazing...back to my point...is how much my children have taught me about myself. When you're explaining to your child why her sister can't drop back down from heaven through a crack in the ceiling and land back in her bassinet, it really challenges your true perceptions of life, death, heaven, faith and God. What is God's true character? What are his real intentions for us? Why was Addie created to die so soon? I think everyone who has heard about her has a new understanding of God. She was created to glorify him, and SHE DID! I know my life has changed and so have the lives of everyone in my family. It is worth it to love deeply even if it means allowing yourself to be hurt or to experience loss.

It amazes me that I can say with honesty, that I would not have changed a thing if it would have meant that Addie wasn't Addie. I would have loved it if she could have been healed, but I would not change her. She was Addie. She was beautiful, strong and the most amazing life I have ever witnessed. She was the embodiment of a miracle and an example of how unique and complex our bodies are. God has given each of us a unique DNA that is never replicated or duplicated. It means that no matter how much we learn about genetics scientifically, we still can't predict the human body and how it will handle its own unique genetic material. There is truth beyond our understanding, still.

My sister wrote about how Addie was not a disorder, but a person. She said, "God knows her name it is not trisomy or tetralogy...it is precious and she is precious." My sister has a gift of insight. Really. I think Addie is that gift for Ainsleigh too, she was witness to so much and although she is only 2 and a half, she is wise in ways some adults aren't because of the gift of her sister, even if it was only for a few short months. Addie also had such a loving sister who prayed for her before we even knew she was a she. Ainsleigh continues to pray each night and thank God for taking good care of Addie in heaven. Children are just so amazing and capable of having so much wisdom! The day Addie died, Meghan left my apartment with her little Eden. It was dark and Meghan explained that they had to leave because we needed to get to sleep. Eden said, "Baby Addie is sleeping in heaven tonight."

wow.

Now I just ask myself what does it all mean? What do I do with this experience? Addie's life was valuable no matter what I do, but still I feel like I am so changed, life can't go on as it was.

Ainsleigh will continue to challenge me. I see my habits, my traits being repeated in her and I am so much more aware of things I didn't think much about before. I am convinced that I need to teach her that she can determine her own reality, she does not need to have it decided for her by horrible role models she will be bombarded with on television shows and magazines that are trying to profit off of her loss of innocence. I guess I also need to make sure I am living in that truth myself!

I wanted to talk about how much I love Addie, how much I learned from her, how beautiful she was, how sweet, how much I miss her smell, her eyes, her cry, her little coos, the way she kicked and moved her little arms, waking with her at night, how she would be so wide-eyed and so sweet, how Ainsleigh would kiss her head and say, "oh, baby Addie, you're so boo-i-ful" and how Addie would often cringe a little no matter how gentle Ainsleigh tried to be. It was so neat to see. I miss Addie so much. Things that are happening now are so unreal. As the many cards come to an end, we get the death certificate...cause of death "cardio-pulmonary arrest brought on by trisomy 13, tetralogy of fallot." Could it have been different? What kind of person would she have been? what other lessons would she have taught me?

And I rambled on about so many other things. I will always be in love with her, always thinking about her, re-analyzing everything. Relationships are so amazing and in times like these, they are always changed, relationships between family, sisters, friends...cousins, strangers! Life is deeper than we know

Remembering Addie - Services

Addie passed away this morning at 1:13 a.m. in her Daddy's arms. She fought to live until the very last breath.

She will always be loved and we will always feel like a member of our family is missing until we see her again. Thank you for all of your love, encouragment, and for all of your prayers. We will never, ever forget it.

Addie's services will be Monday, April 2nd at Bethel Baptist Church in Galesburg.

We will have a visitation at 1 p.m. and Service at 2 p.m. and I can't believe I am writing this.

We were so blessed with nearly 4 months with our precious daughter, but it went by much to quickly.

Here's a poem I found that somewhat explains what I'm feeling. I thought some of what is says is very fitting of little Adeline.



God sent an angel to the earth...
The sweetest angel too
and for such a tiny little thing,
she had so much to do.
She knew she did not have
much time upon this earth to stay,
so she did not waste a second;
she got started right away.

Her eyes were bright and sparkly,
she took in every turn.
She did not miss a single thing,
because she came to learn!
God sent her here to touch the
hearts of those he could not reach...
She taught them courage, strength and faith,
because she came to teach.

Her tiny little body
was so full of God above,
you felt it when you held her,
because Addie came to love.

In three short months she managed
what many never will.
When she went home to Jesus,
her purpose was fulfilled.
She learned and taught, loved and played,
she learned her lessons well.
I know he was so proud of her
when she went home to dwell.

But when I miss her OH-SO-MUCH,
I can almost hear him say,
please understand, her work was done...
Addie did not come to stay.

Poor Addie

Well, I don't really have any good news to report. The nurse just left. Addie is really struggling to breathe. We had hoped the doctor would prescribe something to thin out her mucous so she wouldn't struggle so much to breathe, but apparently he doesn't think it will help. She's coughing a lot and sounds horrible.

Please pray for her, if she is to go, I really don't want it to be like this. But then, I know that I just really don't want it at all. We are in need of some serious strength right now. I am so in love with my baby. She is a beautiful person. I am holding my breath over how the future is going to play out. My heart breaks for Ainsleigh and the idea of her losing her baby sister.

Mom and Meghan have been alternating coming to help me. Without them I would have lost my mind a long time ago. Carly is coming on Friday. Please pray that Addie hangs in there long enough so that Carly can meet her. I feel so helpless to do anything for my poor child and I feel like the doctor has given up on her.

We have been blessed to have all of this time, but it makes it so hard to let go. I have to tell you all that I am so amazed by how you and so many others have reached out to us and I hope we can do the same if you ever need anything.

Keep her in your prayers tonight.

Before I try to get some sleep

Addie's somewhat stabilized again. She's definitely more blue than she was before and her heart rate is higher. She seems to slip in and out of good times, then bad. Sometimes she takes her entire bottle. Sometimes she doesn't have the strength to eat at all. She has problems with, well, certain bodily functions, and that scares me. She has apnea spells sometimes at night. All signs that her heart is failing.

I am so, so exhausted. My in-laws and my family have been so helpful. I'm too tired to think about meals or cleaning or laundry or bill-paying and I can't remember the last time I truly grocery shopped for anything other than diapers, snacks, or formula. My brain is in a constant struggle over how I can let my child die and not have surgery to fix her. No one else understands this either. But the doctors insist that, because she has trisomy 13 (a disorder they term "incompatible with life"), she will only continue to have problems. The statistics do point to this, but she's already beat so many other odds.

I have a true moral dilemma. I am not ready to give up on my child, but I am also not ready to have surgery. it truly frightens me to hand my child over, not knowing if I'll ever hold her again, unable to comfort her if something should go wrong. I'm so scared of her dying in a cold, sterile environment, when she could be in my arms. We've been through that already, when she was in the NICU. She would also have a tremendously difficult recovery, even for an otherwise healthy child. Even if I demanded surgery, I would have to struggle to find a doctor that would even refer me. Then there would have to be a surgeon who would be willing to perform the surgery and an anesthesiologist who would put her under, in a facility that would legally allow the surgery in the first place. Everyone is afraid of litigation. My health insurance might not cover the surgery under the circumstances. All of these are things I do not have the energy to fight. I'm ashamed to admit it, but I really don't. I'm scared to even make a decision.

I have this conflict going on in my mind non-stop and I can't believe the stress it causes. Between taking care of Ainsleigh and Addie, fighting with our Healthcare providers, and visits from hospice, it's really hard to even have a conversation with Tim. I'm trying to be strong and focus on Adeline. It's only fair since she has been such a strong little girl. She is so beautiful. She's getting these beautiful long eyelashes and she talks all the time now. She grabs her blanket and holds on while she sleeps. We know she is seeing something because she's starting to look up at people who come to see her. I just wish I could cuddle her without feeling like I'm making her uncomfortable.

I go through this list of things I want to do but can't under our circumstances. I keep thinking to myself, "once this is all over, we can do that again." It's just little things, like buying my own groceries and cooking meals, visiting friends and family, going for walks, taking weekend roadtrips, taking Ainsleigh to story-time at the library, going on vacation, seeing some bands play, staying up late at night once in awhile, leaving the house without having to find someone who's comfortable watching Addie and then staying out as long as we want, sleeping at night. I know that sounds so selfish and I feel awful for admitting it, when I know that it probably means that Addie won't be with us anymore. That ISN"T what I want!! I just wish she could be healthy and do things with us. I just want life to be normal again, in some sense. I just don't want to lose her. I'm scared that I will forget the way she smells, the way her voice sounds when she talks or cries, the way it feels to have her little fingers wrapped around mine, and how incredibly beautiful her little eyes are when she looks up at me. She has the sweetest little face and tiny baby body. Ainsleigh loves her so much. She prays for her every night. I tried to explain that Addie was born with some problems and she is getting sick because of them. Ainsleigh said, "no, mommy. Baby Addie isn't sick. She'll be okay because I prayed for her." How do I handle that?

I always hoped I wouldn't have a child with special needs, who doesn't? Now that I do, I'm surprised at how you sort of separate your love for the child with the struggle over how to care for her. I love Addie in such an awesome way. She's amazing to me, because I know how hard she struggled to come as far as she has.

I'm going to bed now, but I feel a little better getting that all out. I really shouldn't blog late at night. It's that time when I kind of go over everything and try to unwind.

Thanks again for everyone's concern. It's so neat that people love little Addie when so few of you have even met her. It's awesome and it keep me going just to have her existence as a person acknowledged by someone other than Tim and Ainsleigh and I.

About Addie

Addie took a little turn for the worse yesterday. It was very sudden. It was very difficult. She stopped being able to eat during the night and I knew something was wrong. The dr came and saw that her liver was enlarged, which is a sign that her heart is failing. She was having awful apnea spells that lasted for over 10 seconds. It started to seem like she was not breathing, more than she was breathing. She's doing better this morning and is really bright-eyed but we can tell she is struggling to breathe. Thanks for keeping her in your prayers and thoughts. We feel blessed to see her recover a little bit this morning.

I added some new pictures. The first is from last night, the others are from this morning. Addie's hospice nurse, Carol (who has been amazing and treated Addie like her own) is in a few. I think Carol has cried as much as I have. Ainsleigh is asleep in the blanket a hospice volunteer made for her. It has Disney princesses. She doesn't know who they are yet, but thinks it pretty "warm and comfy cozy."

oh no

Addie's not doing so hot. Her oxygen saturation is the lowest it has been in months. Her heart rate is super high and she's been much more purple lately. I'm at a loss. I'm tired, sad, and unable to fix her.

Please keep her in your prayers. It's tough and surreal. Could I really lose a child? She's getting such a personality and is alert all the time. She makes sweet noises and looks up at me and tries to suck her thumbs.

I'm just not ready. Oh, oh no. That's all I can say right now.

Almost 2 Months Old!

On Monday Addie will be 2 months old! We are so amazed and so blessed to have our little miracle. That is truly what she is. We never imagined she would make it this far, and be doing so well. She was 4 lbs, 2 oz at birth and is now 6 lbs, 14 oz...almost 7lbs! When we were told she had trisomy 13, the geneticist told us how most babies are miscarried or still born, most die within the first 7 days, and VERY few make it past one month, we've seen statistics ranging from 5 to 10% of live births making it that long. She suggested websites but warned us that those were the rare cases and not to have false hope. So, we basically had NO hope.

Here we are, God is proving once again that the doctors aren't in control. She is doing so well just to be able to eat from a bottle, with no supplementation from a feeding tube. It is also amazing that she has the ability to see, although we're not sure how well, and she holds up her head pretty well already...for a 9 week old baby who was so underweight and early. Next week we are even starting therapy for her so she can have the best chance and to make the most of her life, however long it will be. Sunday a proffesional photographer is coming to take bereavement photos of our family. Check out their website at www.nowilaymedowntosleep.org. It will be such an amazing gift for us and at no cost.

We have been amazed by our baby. From the photos of her at birth, you may be able to see why the doctors had no hope for us. But she is beating odds. We have already learned so much from her. We were told she probably couldn't digest food due to ruptures in her intestines, but they healed! We were told that once she gained weight her body would have trouble managing it and we would see major changes a few weeks after leaving the hospital. We did see changes, but all for the better. We were told she might not leave the isolette if her brain couldn't regulate her body temperature, but she did just fine. We were told she wasn't eating from a bottle and that trisomy 13 babies often don't want to eat because their brains don't let them know their hungry. They don't develop a swallowing reflex. Now she takes over 2 ounces all on her own, loves her pacifier and screams when she's ready to eat. We were told she had apnea spells and once she was weaned off the caffeine she was being given through the IV she would probably have spells again. So far, she has not had to have any severe spells that require artificial respiration, and even the spells she has may be normal for babies as they typically have irregular respiration! We were told that she might not ever gain weight. Now she isn't too far from doubling her birth weight. I could go on and on. The doctors were great and I'm sure were reacting the way they did because of their past experience, but it was so difficult to hear her referred to as a "fluke" or simply a bunch of cells that didn't form correctly, rather than a human child. We all have our imperfections! But these children can experience joy, then there's the tremendous amount of joy she has brought to us already. She is really such a normal baby right now.

Thanks to everyone for being such amazing friends and family and for all your prayers. We wouldn't have made it through this without you all, really. Continue to keep her in your prayers. She is so loved!