50,400 minutes...

I can't believe it was one year ago that we had to say goodbye to Ava. She was such a fighter. The doctors didn't even think she would make it full term. She actually scored a 9 on her apgar (whatever that is:-) I just know it's a good number. And she cried! I burst into tears when I heard her cry. I didn't expect to hear her. I was expecting the worst, I guess. For her to be already gone. She proved everyone wrong. If asked, I think 99% of doctors would simply say that holoprosencephaly is not compatible with life. That's not true! She had life! Is one's life more significant just because they live longer? She lived for 35 days. Pair that with the 283 days that she lived inside of me and that is a whopping 318 days of life! I remember praying for even 5 minutes before she was born just to get to hold and feel her and look at her. Just 5 minutes. God gave us 50,400 minutes! Our family was so blessed to have that time. I miss her so much. I think about her all the time. There is not a day that goes by that I don't feel her missing from our lives. Especially when I do a "kid count" to make sure everyone is with me. I always come up one short. Then I remember, she's already home...

He is faithful

It has been awhile since I've wanted to say anything. This road is so hard, so very, very hard. Most of the time I want to scream. But at who? I don't want it to come out on people around me, which usually happens. Maybe not that they are aware of it but inside I am screaming at them. I get very angry. Why? I don't know what to do with all this pain. Everyone is a target.

Then I want to scream at God. Why did you allow this when you could have stopped it. I found myself screaming at God the other day because my little boy spilled his milk on the floor. I thought, "God you could have prevented this milk being spilled all on my clean kitchen floor, but I guess that was too much to ask, too!" Crazy, I know. But now I had to mop my kitchen floor for the third time this week! And this was 15 minutes before we had to be at church.

So after these bouts of anger who is there to embrace me? Jesus. The very same Jesus that I was screaming at earlier. At church on Sunday (we got there on time even with having to mop the floor) I was singing with joy. It has been four weeks since I was able to sing to my God and actually mean the words coming out of my mouth. He is good. God is good no matter my circumctances because he doesn't change. I praise you Lord that you are faithful...that you don't change. You love me even when I scream at you. Your love for me is consistent, never ending, and unchanging. You are a merciful and faithful God.

Satan is so cunning. Sometimes I am convinced that God is the one I should be angry with. This is a lie. God can handle it, sure. But it was not God's original plan to have all this death and destruction. We live in a fallen world. Jesus is coming back and all will be restored. Until then...

Jesus be a fence all around me.

A Few Moments

Today I have been hit with moments of literal, physical pain. Throughout the day my stomach would all of a sudden hurt as if someone punched me and my head was pounding. It wouldn't last long but it would come in waves. I was trying to fall asleep when it happened again so here I am. I actually feel nauseous. My body is physically grieving for my baby girl.

Five weeks. That's how much time we had. Well actually for 45 weeks and three days she was held either in my womb or in my arms. Moment by moment is how we lived out those weeks. Especially the five weeks that she was here with us...in our arms. I wouldn't have closed my eyes if utter exhaustion hadn't won over. I think I was surviving off of 3 or 4 hours of sleep. I would hit a wall and God would hit me over the head and knock me out. I slept very deeply and then my eyes would pop open a few hours later and I needed to have her back. I needed her in my arms.

I remember realizing that we had to make each moment count...that we weren't going to have many moments. When Ava made it to one week I made birthday cupcakes for her. I don't remember where everyone went but it was just me and Ava. I cried as I realized that this was the day for her mommy to make her a birthday cake. We weren't going to have the opportunity to celebrate the typical "first birthday". I was thankful for that moment.

Throughout our five weeks together I was deliberate about creating special moments. I had to cram a lifetime into days. I didn't know how long I had with her but I knew it wasn't going to be long...it was never going to be enough. So...Ava and I danced together. I turned on some music, held her, and swayed very gently around the living room. We listened to music together while I held her on the couch. I read the bible to her aloud. Not all of it- just some of the Psalms. I sang to her and read books to her with the other children. She even got in the bath with me. I wanted so bad to be able to take her for a walk and to go to the park but she just wasn't well enough. But once, on Wednesday March 12th to be exact, we sat on the porch swing for about 20 minutes or so. That night she had a very tough time and we thought we were going to loose her the next day. Needless to say I didn't take her out of the house again. I studied her toes, her fingers, her eyes, her mouth. I planted more kisses on her than stars in the sky.

I was so thankful God put it on my heart to grasp at the moments we had. To be deliberate. How often do we just go through the motions of the day without being deliberate. How often do we take the time to look into our children's eyes when they ask us a question or when they have something to tell us. There are so many things that I won't get to do with Ava on this side of heaven. That hurts deeply BUT I choose not to dwell on those things. I CHOOSE to dwell on the moments we DID have. And I CHOOSE to continue to grab hold of the moments I have NOW. Love the moments you have with your children, your husband, your family. Good or bad, be there in the moment because you don't know how many you will have.

We were a complete family for five weeks. We were whole for five weeks...we were six. Living life together. Loving, laughing, and living together. Now there's always one missing. I'm seeing three, counting three, and I keep trying to count to four. There are supposed to be four. For a few moments we were six...for a few moments we had four.

Thank you Father for your promise of eternal life.

Do you know...?

I don't even know how long it has been since she left us. I don't really want to know. It hurts so bad. Right now I could just scream at everyone I come in contact with. I can hardly stand to be around people. It is too draining. I just want to tell everyone to SHUT UP! I want so much to be ok for everyone around me. But really I am not and I never will be ok. None of this is ok. It will never be ok. Life just doesn't go back to what it was. It doesn't get fixed or "get all better". That part of it is fine with me. I don't want to go back to where I was. But it is really frustrating when everyone around me is on the same path they were on before Ava was born. I know my friends are sad and hurt for me but nothing is the same. It can't be the same. I am barely breathing here and the world just keeps on spinning. Nothing holds the same weight it did before Ava was born. Some of this is wonderful because it has changed my perspective. I am grabbing moments with my children because we don't know how many more we will get...holding my husband closer and tighter. But what about the stuff that I thought was important before. So much has become so unimportant to me. And I can't imagine it becoming important again. And it really takes alot for me not to scream at people around me for not seeing that some things, most things, are just not as important as one may think! I wouldn't trade places for anything. I am humbled and honored to have my eyes opened and my heart opened like never before. Probably more than alot of people may ever experience. But honestly, it can be lonely. And this is not pride or self-righteousness. It is truth from a perspective of great loss and tragedy and from being striped almost completely bare of self. To go through something like this...to have all these feelings and emotions...I just don't have the words. Even if I could find some words it wouldn't do any justice. And I won't be able to make anyone understand. You don't know what it is like to hold your baby as she slips away. Death is ugly. It is not pretty. Do you know what it is like to hold your baby while she is having seizures? Do you know what it's like to have to stop feeding your baby because she refuses it and it causes her distress? Do you know what it is like to have to give morphine to your baby to help with the pain of her little body shutting down? Knowing that it should be lasting four hours but it only lasts for one? Do you know what it is like to see her color change from pink to blue or purple because she isn't getting enough oxygen and you know there is nothing you can do? Do you know what it is like to have your baby stop breathing for three minutes, or five minutes, or seven minutes and to then see her whole body arch back and gasp for a breath? Do you know what it is like to feel the warmth of her skin give way to the coldness of death? To see her pink skin turn ashen gray? Do you know what it is like to see the glaze come over her eyes and you know she is no longer looking at you but passed you? Do you know the smell of death on your sweet baby's breath? Remembering the day we lost her is enough to make me sick. It is strangling. So don't blame me for not caring about what you care about. I don't blame you for not knowing what it is like. What else is there to do but surrender. God, I surrender. There is nothing else to do.

Suffocating

It has been two weeks and four days since our Sweet Ava passed away. Right now I am feeling like I am suffocating from the pain. I just don't know what to do. I try to busy myself but at this moment every task seems too overwhelming. I really just don't know what to do. I remember when we first got the diagnosis at 18 weeks feeling something similar. Somehow I came upon this scripture that gave me some words to what I was feeling.

My heart is in anguish within me,
And the terrors of death have fallen upon me.
Fear and trembling come upon me,
And horror has overwhelmed me.
I said, "Oh, that I had wings like a dove!
I would fly away and be at rest.
Behold, I would wander far away,
I would lodge in the wilderness.
I would hasten to my place of refuge
From the stormy wind and tempest."
Psalm 55:4-8

My hope

This blog is an attempt to share the amazing journey that God has set before our family. So far it has been a journey of faith and trust on a road marked with anger, sorrow, peace, joy and love. My hope is that these words will bring further glory and honor to the Creator and Sustainer of life.
-rachel