Better Than Life

I've been reading through the Psalms and have been finding great strength, hope and comfort from them. However, a couple of nights ago I came across one that has been giving me fits ever since I read it. Here it is:

Psalm 63:3 (New International Version)

³ Because your love is better than life,
my lips will glorify you.

You may wonder what my problem is with this verse... afterall, I've read it countless times and its even in the lyrics of many songs. Every time I have read this verse in the past or called it to mind, it has been during a tough time in my life. Its always been a comforting reminder to know that my God's love is so much better than this sometimes messed-up, difficult, painful life we live. Because God's love is better than our pain, we will sing his praises.

However, in light of our current trial, I am really having a hard time with this verse-- just being honest here. I'm reading this verse from a completely different perspective. You see, there is nothing that I would love more right now than for my little girl to have life. I desperately want to hold her as she breathes in her first breaths of life, lay her on my chest and feel her body move ever-so slightly as she sustains that life, and put my ear on her tiny chest and listen to the rhythm of her heart beating. Right now, in my human brain, there can be no better thing than life for my little girl.

But this verse is telling me differently. This verse means that God's love is EVEN BETTER than Whitney ever taking a breath, ever crying a tear, or ever falling asleep in my arms. This tells me that yes, God's love is better than all my pain and all the sorrow that this life brings, but it also means that God's love is even better than the best thing that I can imagine at this moment. And that's hard for me.

Please don't think for a second that I am losing my faith or becoming bitter at God because I'm not. Of course I know in my head that His love truly IS better than anything. I know that, I feel that, I believe that. I know that God is not causing any of this to happen, and that our trials do not change the fact that God is good all the time. But the thought of losing Whitney adds a whole new dimension to my understanding of God's love. His love is ... deeper... stronger... better... and far more intimate and personal than I have ever imagined before and because of that, I can praise Him thru our storm. I also have my dear daughter to thank for helping me to see the true greatness of our God's amazing, unfailing, never-changing love. And that is knowledge that will live with me forever.

Amnio

Today we went back to the Children's Hospital. I wasn't able to meet with the neonatalogist, as she had an emergency come up. So we are going to reschedule for another time.

They were, however able to do the amniocentesis today. Whitney's fluid level is up a little, and her cord wasn't totally in the way like it was last time we tried. We didn't have the same radiologist doing it (Dr. H) that we did last time, and I was kinda bummed about that, but this Dr. was just fine. Except for the fact that he kept calling Whitney a "fetus"... I wanted to say "Can you see the heartbeat? Yeah, that's my daughter, not just some 'fetus.' " However, I decided against saying anything hostile, seeing as how he was the one piercing a big fat needle through my belly. :-) He was able to get a clean sample and so now we are just praying that the lab will be able to get us some answers. (Believe it or not, sometimes, even after doing an amnio, the lab is unable to come up with a conclusive diagnosis. With our luck, that would be the case. But we are really praying not!) I'm home for the rest of the day just taking it easy. We won't know the results of our amnio for atleast 8-10 days. I'm not really anxious about that wait, as we aren't really expecting good news anyways. We are just hoping for more knowledge that will aid us and the doctors in caring for Whitney before, during and after her birth.

Thanks for your prayers, all! We appreciate them!

Whitney!

I thought you all might like to see some pictures of this little girl that Sean and I are so madly in love with. So... here she is in all her black-and-white ultrasound photo cuteness. :-)

Profile Pic:
This is my favorite of her... a front-on shot... you can see where her eyes are, too! Isn't she beautiful?

And here's a weird 3-D one... she has a hand in her face and her neck is tucked into her chest a little bit. :-)

Praise for this Appointment!

Through my job, I have been able to meet some really neat people in the medical community. One of them is a doctor I met in a nearby town, where we will be taking our mobile medical unit. He runs a clinic in a very poor town, and never refuses to see a patient if they are sick, regardless of their ability to pay or not. He loses millions of dollars every year, just seeing patients for free. He is a strong, Christian man who is very pro-life and is extrememly well respected in the area. Also through the course of making contacts for our mobile unit, I have gotten to know the VP of this doctor's medical board very well. (She's one of the women I had a meeting with yesterday!) This doctor's wife also 'just happens' to be the head of the neonatal unit at the children's hospital we have been going to.

This morning, our genetic counselor called and said that she would like for us to meet with one of their neonatalogists to talk about what can happen if Whitney makes it to birth, what to expect in the mean time, etc. So we set up the appointment for Thursday at 12. Then I remembered the connection between the doctors I know and immediately called our genetic counselor back and requested that we meet with the doctor who's husband I know. I have no doubt that she is as genuine caring and committed as her husband is. We shuffled the appointment to a time she can be present, and if there are no emergencies that she needs to be at, she will be at our meeting! Praise the Lord!

I know it is a little thing, but this is the first doctor we've had that I know is a Christian and will not recommend again that we terminate our pregnancy. I hope that this meeting goes well... again I'm not really sure all this meeting will entail, but hopefully it will give us more information. And I am learning that in this situation, information is key. We will also try on Thursday to do another amnio. Thanks for the prayers, friends.

Words from Friends

When I first found out I was pregnant, I immediately began a new tab on our bookmarks bar on our computer. This is the bar at the top of our screen, just under the internet address, where you can "bookmark" frequented websites. I started a new tab called "Baby Stuff." I put websites like Babies R Us, The Bump, April 2010 Birth Club, My Pregnancy Calendar, SafeFetus, Cribsheet Patterns, etc. In my free time, I'd browse various websites and add bookmarks to this new tab. I never imagined that by mid-way through my pregnancy I would be adding bookmarks like this: Share Pregnancy & Infant Loss, Poor Prenantal Diagnosis, Pearl's Story, Audrey Caroline, and Centering Corporation.

When I first found out I was pregnant, I used phrases like:

- On her first birthday

- nursery decor

- late night feedings

- developmental milestones

All normal, warm fuzzy things that every new mom dreams of day in and day out.

I started to make decisions about:

- breastfeeding or bottle feeding

- cloth diapering or not

- cry it out or answer each peep

- natural birth or epidural

Not really life or death issues, but just as important to this first time mom who just wants to do everything right.

When we found out Whitney was sick, our vocabulary phrases quickly changed to phrases like:

- incompatible with life

- chromosomal genetic abnormality

- extreme medical intervention

- autopsy

Words I never dreamed I would associate with my first (and only?) unborn child.

In the weeks since we found out about Whitney's multiple conditions, we've had to make decisions about:

- terminate or not (lucky for us, this was a no-brainer, but none the less a difficult thing to face)

- amniocentesis or not

- carry to term or not

- switch doctors of not

- should we do more tests or not

We've never faced this before, and literally everything is left up to Sean and I to decide. While I am grateful that we have total say in our baby's life, it is difficult to know what to do, being in such uncharted territory. One thing I've learned is that there is not always a simple yes or no to any given situation. There's always a little nuance somewhere that throws a loop into each decision to be made.

Though we are facing such foreign circumstances and often feel like we are just drowning in a sea of the unknown, on thing that God is faithful in doing is bringing people into our paths to lift us up.

I had a meeting at work today with some colleagues I will be partnering with on a major endeavor. Throughout the course of our (long) meeting, I received 5 phone calls from different doctors, hospitals and nurses. Each phone call presented a new direction for my pregnancy care, a new person to talk to and consult with, and a decision that had to be made on one thing or another. Luckily, the women I was meeting with were very gracious and understanding of the interruptions.

Throughout our meeting, they shared with me several different gems of phrases that brought peace and strength to me. The biggest thing I came away with from them is don't limit God. I do believe that God will heal Whitney. I know it may not be in the way I want it to, but he will heal her. And for right now, I am believe that at this very moment he is healing inside of my womb. Whether or not that is really happening I have to wait and see... but either way, God is still God. Its not my job to determine the outcome... its just my job to believe he can do it.

One of the things shared with me was about a Jewish tradition... in Jewish tradition, there is an unspoken principle that whenever a visitor crosses the threshold of a friend's house, they are submitting to the owner of the home-- a respect thing. But in return, the owner of the home is giving his protection to his visitor. The same is true on our journey with God... when God opens a door and we cross that threshold, we are in submission to Him. However, God is promising His protection in return. God has graciously opened the door for Sean and I to become parents. And as He always does, he has promised us protection. Of course I know protection doesn't mean freedom from pain, for we live in a fallen world. Over and over in the Psalms, we are reminded that the Lord is our shield, our rock, our fortress, our deliverer. And I am claiming that for us as we are on this journey.

Finally, my friends and colleagues remidned me that God has purposely entrusted us with the life of Whitney Jill because He knows our (Sean's and myself's) hearts and he knew we would make the right decisions regarding her life... he knew that we would love her with all our might until His mission for her is accomplished. Her name is already written in the Book of life, and therefore, I believe He has a plan for her. I am honored that God is allowing us to parent Whitney and love on her for as long as we can. That is what is going to make the next weeks and months possible for us.

Sean started the tradition of celebrating St. Nick's day last year. Its something he did as a kid. As Sean was getting out the stockings and filling mine with candy and a gift, we were both hurting with the knowledge that our daughter may never have her own stocking, or open a St. Nick's gift. That saddens me, and it hurts. But we've decided to include Whitney in our Christmas traditions this year. It may be the only Christmas we have with her, so we want to make the most of it. I know that all of this is really more for Sean and I, but that's ok.

Alright... enough for now... time for hot chocolate and a little TV catch up. :-)

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You Are Not Alone

Of course this phrase automatically makes me think of one of my top 10 fave MJ songs, but that's beside the point....

Several times today, I have been reminded that I am not alone in my suffering. And not that I ever thought the world revolved around me or my problems, but sometimes, in the midst of our pain, it is easy to forget that there are hurting people all around us.

Just with my co-workers, there is so much going on in their lives... one colleague's loss of a young college student, another who had heart surgery yesterday, a woman dealing with the loss of loved ones and the grief that holidays bring, injury and illness in the family... I could go on and on. While it does not make me feel better or change my circumstances to know that so many around me are also hurting, I do take heart in knowing that I am not the only one fighting a daily battle.

The joy that I can see through all of these circumstances, is the hope and joy of Christ. Though many of our situations are difficult and riddled with grief and pain, we are all sisters in Christ, walking through this life together, knowing that this truly isn't the end. Knowing that any trials we may face are ultimately for HIS glory. And can I just tell you how cool some of these stories are going to be when God's full plan is revealed? For the young man who lost his life, I am praying and believing that because of this, his father will come to know the Lord. For my friend who is grieving her loved ones at this time of year, I am rejoicing with her in the promise of eternity where she will be able to catch up on all the years she's missed with those loved ones. And through our baby, Whitney, I am praying and believing that God will reveal his goodness and his glory to those who do not already know him.

We have yet another doctor appointment tomorrow... this time with a high risk OB. I thought my OBGYN was going to just transfer care to this new doctor, but it turns out this new doctor has to do an "assessment" of our situation to see if he will indeed take me or not. Don't really know what that means, other than we will get to see our beautiful baby again tomorrow morning. And right now, that's all that really matters.