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!