He Carries Me

In Honor of one year without Olivia (05.14.09) ~

There were photographs I wanted to take; things I wanted to show you....

:: my niece and daughters, except for Olivia ::

:: an (almost) family Christmas picture ::

People say that I am brave but I`m not. Truth is I`m barely hanging on.
But there`s a greater story, written long before me, because He loves you like this.

So I will carry you, while your heart beats here.
Long beyond the empty cradle, through the coming years.

I will carry you, all my life.
And I will praise the One who`s chosen me to carry you.

Such a short time, such a long road. 

All this madness, but I know 

 that the silence has brought me to His voice and He says....

I`ve shown her photographs of time beginning, walked her through the parted seas, 

 angel lullabies, no more teary eyes.

Who could love her like this?

P. S. These words are taken from the lyrics of the song "I Will Carry You" by Selah based on Audrey Caroline's story, which you can read about at Bring the Rain. I think these simple words sum up the course of this last year better than any earthly words written by me could.

Blame

This will probably be a week of sharing a lot of my thoughts. The Good. The Bad. The Downright Ugly. They are starting to pile up. Here goes.




I blame myself.




For Olivia's trisomy and ultimately for her death. Even if that doesn't make sense.

Rewind....
It was two days before Thanksgiving when the pregnancy test read positive. I purchased the test, along with all the groceries needed for my Thanksgiving dinner for 20. Oh, how I wanted to just cancel Thanksgiving. Can we please just call all the guests & tell them not to come? I bawled. I locked myself in the bathroom. I didn't even tell Hubs what the test said. Guess the red eyes, blotchy face & hyperventilating when I got out of the bathroom gave it away. This pregnancy wasn't planned {not by me at least}; it wasn't even Sebastian's first birthday yet.

Fast forward...
The words no mother wants to hear, "Trisomy 18", "Incompatible with life", "Fifty-percent stillbirth rate". And so I blame myself. I deserve this suffering. If only I would've wanted Olivia from the very beginning, God wouldn't be punishing me this way. That is the biggest If Only. There are other smaller If Onlys too. If only I would've taken my prenatal vitamins. If only I wouldn't have said in the ultrasound room, "I don't want to raise a child that is severely disabled." If only I would've prayed harder. It must be my fault because I'm the Mama; she was inside of me. At least I could've carried her to full term so that I could meet her alive, face-to-face. But No. I couldn't even get that right.

I recently opened my journal & these are the words I wrote, nearly one year ago:

07.10.08
I do think, often, that suffering in my life is because I did something wrong or is a punishment from God. It's not too often that I associate suffering for doing good or what is right. I do believe that suffering strengthens my faith in the Lord. When times are extremely tough, I find myself praying more than usual. I don't think I have yet learned how to "embrace" suffering. I need to have a clearer mind now about the peace and purpose of suffering in my life.

One year and heaps of suffering later and part of me still believes that. And then I read parts of Job. And then I read 2 Chronicles 31:20-32:1. And then I read Ps. 103:10, "He does not deal with us according to our sins, nor repay us according to our iniquities" and Romans 8:1-2 "Therefore, there is now no condemnation for those who are in Christ Jesus, because through Christ Jesus the law of the Spirit of life set me free from the law of sin and death". And His Word tells me something different than what my sinful flesh {and Satan} wants me to believe.

So what does this mean for me now? That even if I did sin by not counting Olivia as an immediate blessing, that God does not punish me accordingly. It's still just so hard not to thnk that 'I got what I deserved'. Most of me knows that it really wasn't my fault. That there really wasn't anything I did wrong or could've done differently to change the outcome. It's easier when there's someone to blame though, don't ya think? Even if it's ourselves? Because the alternative, well........the alternative would be to wrestle with God about why He allowed this suffering to pass through His hand. The rest of my journal entry from nearly a year ago gives me a glimpse at the anwser:

"Testing and suffering are not our enemies. In fact, they may be our allies in producing in us the sweetness of the character of Christ and in deepening our dependence on Him."

With the socks?

It must be around here somewhere. In the hall closet? Nope. Junk drawer? Uh-uh. Kids' overflowing toy box? No luck. Maybe it ended up where all the socks mysteriously go to when you put two in the washer but only one comes out in the dryer? Not a chance. What am I looking for?


My old life.


I know, though, that it is gone for good. Never to be seen again. I miss it though. And I am still adjusting to this new one, trying to at least feel comfortable in my own skin. I feel like I'm trying to put together a 5000 piece puzzle, except without the picture on the box as a reference. There is some frame here {I *always* put those straight-edged pieces together first}, but it seems like it will be a long time before I figure out what this new life is supposed to look like & how all the pieces will fit together.

There was a time when I just desperately wished I could've turned back the clock to a time when my life was less painful & complicated. I know, of course that that isn't possible, and besides, there is an appreciation and spiritual awareness to this new life that I'm living. I feel like there is a certain beauty to the different person that I've become {is it conceited to say that?} because of the sweet brokenness that Olivia has brought to my life. But at the same time, there are so many rough and broken edges to me that just feel so....unfamiliar. I apologize in advance if I accidentally hurt you with one of those jagged pieces of me. I really would never mean to. There have also been plenty of times, from our T18 diagnosis up until the present, that I wish the clock would just spin forward a year or so, but I know, yet again, that there would be so much that I would miss. So much that I need to go through, not just get over.

And so I'm just gonna stop looking for it, my old life. Hopefully, wherever it went, it has some nice, clean unmatched socks to keep it company.

One Month Ago...

One month ago today, I awoke to a seemingly normal day. Showered. Got dressed. Had breakfast. The usual. My mom arrived late morning to care for our munchkins & Hubs and I headed off to our level II ultrasound appointment. I remember the weather being unseasonably nice. We stopped at Panera and grabbed some lunch, eating in the car as we drove along. I got us lost {I thought I remembered the directions.....} and we arrived at the hospital a few minutes late. We didn't wait too long before being ushered into the ultrasound room. We got to see our beloved Olivia on the BIG flat-panel screen, which Hubs was quite impressed with. They were short staffed, so the tech left and returned several times, trying to get the doctor to come and discuss our results. I remember Hubs saying, "You're not worried, are you?" I did feel a little silly for maybe being too concerned about something that could turn out to be nothing. And then the doctor came in. Rick remembers him saying, "Has anyone talked to you about anatomy?" As he scanned, the doctor typed all sorts of terms on the screen: Dandy Walker. VSD. Left cleft lip/palate. Most of what he said next was a blur, but I remember how he began.

There's a lot going on here.

And that's the moment when I felt like my whole world came crashing down around me. All I could do was scream, alternating between "NO" and "GOD". Unless you've experienced it, I'm not sure I could describe it. It's as if that noise was coming from somewhere down deep in my soul and I just. couldn't. stop. My dear husband, bless his heart, did the best he could. He cried. He held me fiercely. I remember him telling my mom on the phone, "Just pray. It's really bad." I remember that I couldn't bring myself to look him in the eyes. To this day, I still don't know why. Maybe if I could avoid the pain and fear in his gaze that I knew was there, I could convince myself that things weren't so terrible.

No amount of convincing, though, could change the path that our lives had so suddenly careened upon. Trisomy 18 had entered our lives and would change them all forever. And as I sit here, exactly one month later, only 4 weeks between diagnosis and Olivia's death, I'm still shaking my head at the.....suddenness of it all. What happened to my old life? Did it really change in the blink of an eye? Is life truly that fragile?

Since many of you tell me, "Let me know if there's anything I can do....", I think today I will take you up on that offer. Here's what you can do for me: Hug your babies extra tight. Be a little more patient with everyone. Let the dishes soak a little longer and go play in the grass. Give your husband that extra dose of grace that you may not think he deserves, but so desperately needs. Call that friend that you've been estranged from and make things right.

And then, come back and tell me about it. If you don't want to tell me specifics, feel free to simply write: I celebrated life today. It'll give me blessings to focus on, instead of thinking about where I was one month ago. And I think you might just get blessed in the process as well.

Holding On,

Dare to Hope?

First I want to thank all of you for your prayers and support and encouraging words and offers of help. They mean more to us than you could know. As my wife says, you have been “Jesus with skin on” to us.

As many of you know, when you get a lot of information in a really short time, something gets missed, so I wanted to share some more details with you all that I forgot two days ago. One detail is that Olivia also has a cleft left palate, and a misshapen head. All of the previous things and these things put together lead the dr in Rockford (dr R) to believe there is a chromosome problem. Also, many might not have known, but Beck had high blood pressure from the beginning of this pregnancy and was recently put on blood pressure meds. The dr R from Monday believes that this indicates chronic hypertension which would definitely affect the placenta and therefore Olivia’s growth.

Yesterday, I spoke with dr R and he did tell me that Olivia did grow between ultrasounds, but nowhere near the minimum amount that they like to see. But that is better than absolutely zero growth. At this point, we are waiting at home and waiting for the first result from the amnio, which should arrive between Thursday and Saturday, and then dr R will call us.

As I have had time to think and pray and absorb the information, I feel all sorts of things: fear, anxiety, pain, questioning, doubt, … I don’t know but the LORD reminded me the following lyrics:

I’ve walked the valley of death’s shadow
So deep and dark that I could barely breathe
I’ve had to let go of more than I could bear
And questioned everything that I believe
But still even here
in this great darkness
A comfort and hope come breaking through
As I can say in life or death
God we belong to you.

--Steven Curtis Chapman, “Yours”, 2008 Radio Version

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. --Philippians 4:6-7

Many of you have asked how to pray, so I ask that you specifically pray for the following:

Pray for Beck’s blood pressure, for the placenta to work right, for the umbilical cord to open up and supply Olivia’s needs, for Olivia’s heart to work right, for Olivia’s brain to develop right, for Olivia’s hands to open. I want to dare to hope for the healing only the LORD and trust the Him that Olivia belongs to Him, as does Sebastian, Sienna and Tatiana. Thank you all for your love and prayers.

Rick

PS-Beck is reading the comments is very thankful for all the support.

Baby Olivia

Hello to those who follow Beck's blog. Unfortunately we got some pretty bad news yesterday so this is her husband posting today. As some of you know, Beck has been pregnant for 25 weeks now and the baby has not been growing very much, so we had an ultrasound yesterday at a hospital in Rockford that specializes in high risk pregnancies. After the ultrasound, the doctor comes in and reviews the results right away.

The dr spoke in percentages and probabilities but is pretty certain that Olivia has Dandy Walker, which is a form of mental retardation affecting motor skills in varying degrees. It is a problem with her cerebellum and has most likely affected her hands at the least as one is in a fist and the other in a half fist, which indicate neurological problems. There is also a heart problem, which is VSD or tetri something or another. Then her umbilical cord has 2 arteries and 1 vein but only one artery is supplying blood, which leads to the original reason for going: slow growth. As a result of all these things put together, this dr is not optimistic that Olivia will live and that she has probably not grown at all over the last several weeks.

We decided for an amniocentisis to find out more information and hopefully be able to make better decisions, and the first test will/should return on Friday and will tell us if Olivia has a 13 or 18 chromosome problem, which if she does, will mean she has a "lethal" genetic problem. Meaning Olivia won't live and probably won't go the full term. Even if that is not the case, the doctors seem skeptical because Olivia is not getting all the blood she needs and isn't growing.

How to pray? Well, we are just trying to soak it in. Don't know what to think exactly but we know the LORD loves Olivia, even more than we love her. If she goes to be with the LORD there is no better place for her than in His arms and if the LORD wills for her to stay, we pray for a miracle, just like in the Bible when Jesus healed the lame, the blind, the deaf, the sick...

Already, many of you have called and comforted us as well as prayed and we appreciate you all at this time. I only ask for patience if my wife doesn't answer or talk much. I can't imagine what she must be going through, but we must trust that the LORD knows what is best and why, even when we are in the midst of the storm. Please continue to pray for wisdom for us as we make decisions for Beck and Olivia. God bless.

Rick