Thursday, December 31, 2009

Normal With A Side Of "Suck"

I know this isn't the most eloquent or politically correct way to say this, but sometimes, things just suck.  I know Shannon Wendt would tell me that the only proper use of the word 'suck' is to use it in verb form, in relation to your vaccuum cleaner.  But, I'm choosing to use it in the "this-is-no-fun" context for the time being.

Have I mentioned that I love my job?  I work at a pregnancy care center, where we try to provide men and women with the resources, tools and knowledge that they need to choose life for the unborn babies.  We have nurses onsite who do ultrasounds, and just this past week, they did an ultrasound on me so I could see little Whitney again.  It was so much fun!  We saw her tiny fingers, hands, toes and feet and watched her as she wiggled around inside of me.  For the longest time, we couldn't find her legs and feet... I knew they were there because they'd been kicking me, but we just couldn't see them on the ultrasound.  Finally, after moving the wand to a different angle, we figured out where her feet were... they were CLEAR OVER HER HEAD!  She was laying on her back (breech) with her hands and feet both up by her head!  Silly little pretzel girl.  :-)  But it was fun.  For just a little window of time, I felt like a 'normal' pregnant woman, just enjoying the reassuring sight of her baby's heart beating.  Of course i saw the things on the ultrasound that aren't 'normal'-- she has essential no amniotic fluid, some of her facial structures are a little 'off' and her belly is still smaller than her head and limbs-- but I was able to overlook that and just see the beauty that is her life.

Later that evening, I was telling Sean about the ultrasound.  (He wasn't able to be there- his best friend's wife had a baby that day so he was helping to watch their 2-year old little girl for a little bit!)  I told him that I felt 'normal' but that in everything related to our pregnancy, there is this underlying "suck."  No better way that I can really explain it other than there's always a part of it that sucks.  But I was surprised, because the "underlying suck" doesn't negate the moments of joy and happiness that I am sometimes able to feel.  I began thinking about the way I was feeling, and realized for the first time that this is what true joy feels like.  I know joy and happiness are different... joy is something we can always have, even in hard times, because our hope is in Christ.  But I have never experienced such polar emotions as I have lately... the "underlying suck" can best be described as intense sorrow.  But no matter how sad and sorrowful my cries of grief are (and they are always there), there is also an accompanying feeling of calming peace and actual JOY.  Its the strangest thing ever.  Experiencing true joy in this way is so new and so deep for me... another characteristic of God that I will cherish forever.  (Much like my recent epiphany with the power of his love.)

Years ago (more than a decade now), I struggled with an eating disorder.  I was in several hospitals for long periods of time.  One year, I spent Christmas through Valentine's day in a hospital in Kansas City.  I had a psychiatrist who was the weirdest guy I'd ever met.  He had this thick, Middle Eastern accent and always said the strangest things-- we'll call him Dr. S.  For New Year's Eve, I wanted to be able to stay up with the other patients until midnight.  (EVERYTHING  I did had to be approved through Dr. S.)  So, I told him (in my best 17-year old whiney voice) "I just want to be normal!  And normal teenagers stay up past midnight on New Year's Eve!"

Dr. S then looked at me and said (I'll never forget this... even with his crazy accent) "You vant to be normaaal?  Zhen eat ahm-burgers and french fries, coooookies and ahce cream.  ZHEN you vill be nor-mal."  So guess what I had for dinner that New Year's Eve?  A hamburger, french fries, cookies, and ice cream.  Probably the hardest meal this anorexic teenager had ever eaten.  But ya know what?  It felt good.  And it felt normal.  And it started my pathway to healing.  

So why do I say all that?  I guess just to say that 'normal' is subjective.  Really, feeling 'normal' can be whatever you make it to be.  Nothing these days seem normal.  It is not normal for us to talk about the birth of our firstborn in the same sentence as her funeral.  It is not normal to talk about coming home after giving birth with no baby in our arms.  Nothing about life lately is really 'normal.'  Things are unnatural, lacking closure and answers right now.  But then I think about what is normal in situations like our's... I guess there really is no 'norm.'  So in that sense, Sean and I are free to set our own 'normal.'  And if being 'normal' right now means just making it through the day, then crumbling in each other's arms at night, that's ok.  I know that to most people, it would not be 'normal' to feel sorrow and joy at the same time.  But because of our hope in Christ and the incredibly generous promise of New Life, we are able to make our "normal" be Joy with a Side of Suck.

I know that several of our friends have been praying that Sean and I will really be able to enjoy the little things during this time.  And friends, can I just say thank-you so much for that?!  We are truly finding the joy in everyday moments with each other and with Whitney.  She's been moving around a lot and I have been loving that feeling.  We are taking maternity photos next week, and are really looking forward to it.  We are trying to keep the joy in our marriage, and not let the Enemy drag our love down with sorrow.  So thank you, friends for those prayers.  They are working and God is mighty!  Love you all and hope you have a happy new year!



Sunday, December 27, 2009

Desert Song

A girl sang this song at church this weekend and I think it is so beautiful and SO pertinent...

You can listen to the song HERE

The Desert Song

Verse 1:
This is my prayer in the desert
And all that's within me feels dry
This is my prayer in the hunger in me
My God is a God who provides

Verse 2:
And this is my prayer in the fire
In weakness or trial or pain
There is a faith proved
Of more worth than gold
So refine me Lord through the flames

Chorus:
And I will bring praise
I will bring praise
No weapon forged against me shall remain

I will rejoice
I will declare
God is my victory and He is here

Verse 3:
And this is my prayer in the battle
And triumph is still on it's way
I am a conqueror and co-heir with Christ
So firm on His promise I'll stand

Bridge:
All of my life
In every season
You are still God
I have a reason to sing
I have a reason to worship

Verse 4:
This is my prayer in the harvest
When favor and providence flow
I know I'm filled to be empited again
The seed I've recieved I will sow

For Christmas, I got Sean a couple of books by his favorite author, John Piper. Sean has about 10 books in his reading queue, so I started reading one that of the books I gave him. It is called Spectacular Sins (and their gloabl purpose in the glory of Christ). In true Piper fashion, it has taken me two days just to process the introduction! This is no weak sauce, folks. But I think this book is going to be right up my alley.


All along, I have known and proclaimed that God is still God. God was the same good God on July 31 (the day I found out I was pregnant) as he was on December 31 (the day we got new it was Triploidy). In the past, Sean and I have been personally hurt by the sinful choices of men around us, but have held to the truth that God is ultimately in control. In the sins of other people, though we may be affected, it is easy to know that God is still God.


But when something like this happens, and there is seemingly no one to blame, what then? Do you just consider the pain is a result of sin in general? Or do you blame God? This book is making it abundantly clear that even in the midst of pain and sin, God is still God. And not only that, but God's glory shines through in the aftermath of even the worst sins. Piper, of course, puts it better than me:


"God did not just overcome evil at the cross. He made evil serve the overcoming of evil. He made evil commit suicide in doing its worst evil...the apex of evil achieved the apex of the glory of Christ. The glory of grace." (intro p. 12)


(see what I mean? Not weaksauce, people!)


"It seems to me that Christians in the West are being coddled. We suffer little in the name of Christ. Therefore, we read the Bible not with a desperate hunger for evidences of God's triumph in pain, but with a view to improving our private pleasures." (ouch) "People who don't like Christians are all around us. Only a strange providence keeps our chruches from being bombed. It is only a matter of time till the reality of the rest of the world comes home.... The coddled Western world will sooner or later give way to great affliction. And when it does, whose vision of God will hold? Where are Christians being prepared for great global sorrows?... Christians in the West are weakened by wimpy world views. And wimpy worldviews make wimpy Christians. God is weightless in our lives. He is not terrifyingly magnificent. His sovereignty is secondary (at best) to his sensitivity." (intro p. 13)


"My aim is to show that sin and evil, no matter how spectacular, never nullify the decisive, Christ-exalting purposes of God. No, my aim is more than that. These spectacular sins do not just fail to nullify God's purpose to glorify Christ, the succeed, by God's unfathomable providence, in making his gracious purpose come to pass." (intro p.17)


In the Desert Song, I love the part that says:

I will rejoice! I will declare: God is my victory and he is here!


That's my prayer for this week... blessings to all!



Friday, December 25, 2009

Happy Merry, Everyone!

Cmas2009 pic
Merry Christmas to everyone, from our house to your's.  We're having a bittersweet holiday as we remember our Saviour's birth try to make the most of this Christmas with our sweet baby girl.  Sean and I have each other by our sides, our baby in Shey's belly and Jesus forever in all our hearts.  We read the Christmas story for Whitney this morning, and to say the least it was very special.  We are beyond blessed with excellent friends and family, both near and far.  Have a great weekend! 

Wednesday, December 23, 2009

Ain't no Superman

Nacho 


Just in case anyone is wondering, we are not super-heroes.  Today sucks.  Last night sucked.  Not very elegant I know, but that's what the heart feels right now.  We are sad and hurting and there is no way around it.  On the positive side, I think I would look better in that outfit.  To really spike hits on this site, I might even put up a picture of my new PJ's after Christmas. 


We know people are praying and I believe that is the only way we get through each day.  I guess I wanted to share my weakness.  Love you all!  Merry Christmas Eve eve!!



Tuesday, December 22, 2009

The answer to the tests...

I am going to attempt to explain in this blog what has been confusing the doctor's since we began.  Forgive me if I am too technical, all I am doing is copying information from other websites so that you may be informed.  So here we go:


A few weeks ago the doctors took some amniotic fluid from Sheyenne's belly (that's real technical I know) so that they might run some tests in order to determine what is wrong with Whitney.  They called us yesterday with the results.  They determined that our baby has a genetic disorder called Triploidy.  Here's the best way I can describe it... Genetic abnormalities such as Downs Syndrome or Trisomy 18 are conditions caused by an extra copy of one particular chromosome. Triploidy is an extra copy of ALL the chromosomes.  Here's a more technical explaination:


"Triploidy is a rare lethal chromosome abnormality caused by the presence of an entire extra set of chromosomes. A fetus with triploidy has 69 chromosomes, rather than 46. The majority of fetuses with triploidy are spontaneously miscarried during pregnancy. Those that survive until birth will have severe growth retardation and multiple birth defects. This condition is incompatible with life." 


"Triploidy is a devastating condition caused by having a full extra set of chromosomes. This extra set of chromosomes causes a variety of serious birth defects, placental problems, and severe growth problems in a fetus. In fact, most pregnancies in which the fetus has triploidy end in a spontaneous miscarriage. Very few infants with triploidy survive to term. Of those that do, most are stillborn and those that are born alive usually die shortly after birth. Infants with this lethal condition are generally small due to severe intrauterine growth retardation (IUGR) and they have multiple birth defects, including facial abnormalities, such as cleft lip, heart defects, neural tube defects (spina bifida), and other serious birth defects. The exact pattern of abnormalities depends on whether the extra set of chromosomes was inherited from the mother or from the father. Unfortunately, there is nothing that can be done to treat or cure triploidy."


It is said that Triploidy happens in only 1-2% of ALL conceptions, which makes me laugh because it feels like that makes sense for us.  Another stat is 1 in 10,000 make it this far in the pregnancy because most babies die after only a month in the womb. 


So where does this leave us now?  That really is a great question because we don't really know that answer.  As we have been, we will continue to wait and see what happens.  We know that the doctors will not do anything "heroic" to save Whitney if she is born alive.  I think I can speak for both me and Sheyenne that all we want is to hold our baby girl.  So that continues to be our prayer to God, that he would allow us to hold this precious life that we have been so excited to see. 


Last night I got to feel her move in Sheyenne's belly for the first time!  It truly warmed my heart and now I know that my Christmas wish has come true.  If you have any questions please email me (seanwilson8552@gmail.com).  Thank you for continuing to read and we will continue to update this as God continues to teach us what we need to learn.


 



Sunday, December 20, 2009

Why us God?

To be honest this is a question that creeps into my mind from time to time, and I am ashamed of that.  It would be easy to say, "Sean, that is a perfectly good question to ask and no one could fault you for asking it,"  but the question of "Why?" feels so empty.  Living in America we are accustomed to asking this question to God as if he were obligated to answer us in an apologetic way.  Frankly it makes me laugh out loud thinking I can push God into a corner and force him to explain the reasoning behind the woes of my life.  God is loving and understanding and I am thankful for Jesus living on this earth for he knows where that question comes from for he cried out it too on the cross 2,000 years ago.   


Recently I heard someone talk about the Virgin Mary and her thoughts after she conceived Jesus by the Holy Spirit.  Many have said that Mary must have been so distraught in her current situation, and that she would have cried out to God "why me and why now?"  This thought goes back to our American based theology that everything centers around us and that God is to do everything possible to make our lives better.  Do I think that Mary never doubted what was happening in her life and that God was watching over her?  No, she was just as human as you and me, but I do not think that she lived in the question of "why me" either.


In Luke chapter 1 we read words that came straight from her heart and we can see her true motive in her relationship with God.  It says,


"My soul glorifies the Lord
47and my spirit rejoices in God my Savior,
 48for he has been mindful
  of the humble state of his servant.
   From now on all generations will call me blessed,
49for the Mighty One has done great things for me—
  holy is his name.
 50His mercy extends to those who fear him,
  from generation to generation.
 51He has performed mighty deeds with his arm;
  he has scattered those who are proud in their inmost thoughts.
 52He has brought down rulers from their thrones
  but has lifted up the humble.
 53He has filled the hungry with good things
  but has sent the rich away empty.
 54He has helped his servant Israel,
  remembering to be merciful
 55to Abraham and his descendants forever,
  even as he said to our fathers."


My soul glorifies the Lord.  What a wonderful thought and prayer for us in our times of need and trial. What if we started focusing on that first, God how can my soul still give you glory in this time of pain, God how can I praise you when all seems to be falling down around me? 


I know for me this is hard, as it is for anyone who truly puts the focus on God first and not themselves.  I have been thinking a lot about Mary lately and have a few more thoughts to share, but they will have to wait because this post has been too long and I would be surprised if anyone has read the whole thing  :)


Seriously, Christmas is the best time of the year because the focus can truly be taken off of ourselves and placed in the One that it belongs.  This Christmas I ask you (and myself) to put your trust and hope in the One that loves you and created you.  Trust in his plan no matter what is going on around you.  Pastor Dave had a great analogy this weekend about how with God we don't always know why things are happening but in the end God always comes through.  Trust in him.



Thursday, December 17, 2009

Dancing with my baby

This has been a rough week.  Early this week I had my first dream about my baby.  I wish that I could remember it clearly, but all I can tell you is she was beautiful and had gorgeous brown hair and rosie cheeks (like me) and a heart melting smile.  How, you may be asking, did I know it was my baby girl?  That is a good question and the only way I can answer is I woke up right after the dream and began praying for her again.  

It has been about a month since we found out all the difficulties with our girl.  The days have been different and difficult in their own ways.  There have been many different things that have set off emotions that I cannot explain.  Being at home with my family was great but difficult in its own ways.  It was hard being with them having the thought lingering in the back of my mind that they will never get to meet the "new" addition to the family.  It is hard living in the hope that everything can be alright but with the reality of what the doctors are always telling us.  

We had another doctor appointment today with the same old results.  NOTHING!  Whitney's heart is still beating which is wonderful, but the doctor again has no news for us and we are still waiting on the results from the amino.  This pregnancy has been nothing but waiting and waiting and waiting.  I thank God for the Psalms which has ministered to my heart throughout this whole process.  The many words of David crying out to the Father comfort me in letting my true emotions out as well, which if you know me is difficult because those true emotions come in the form of tears.  

Tonight I got to watch my best friend dance with his baby girl.  It was obviously bitter/sweet to me.  My friend has been a huge support to me and a great role model in being a dad.  What's funny is without him I would have been so incredibly scared about being a dad to a girl, but because of his great daddyness I knew I could do it.  I loved watching him and his daughter dance, and I continue to pray to God that I might get the chance to dance too with my baby here in this world, but if not I know that my day will come in heaven where all imperfections are taken away.  Whitney we all love you and continue to lift you up in prayer to the one who knits you in the womb.



Saturday, December 12, 2009

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.



Thursday, December 10, 2009

Amnio Appointment

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 mydaughter, 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.

Several people have asked why we decided to do the amnio, even though we are not going to intervene in this pregnancy, regardless of the diagnosis.  The reason that we chose to do this was mostly for knowledge.  There are certain chromosomal abnormalities that are completely incompatible with life (Trisomy 18 & 13, just to name a couple).  If we know before she is born that she has such a condition, we will be able to just hold her and be with her in the moments after her birth, as opposed to the doctors whisking her away and trying to work on her to keep her alive.  If we don't know what kind of condition she has, the doctors will have a legal obligation to take her away and immediately start treatments.  Of course, if there is any chance she will survive, we want the doctors to do whatever they can.  But we also realize there are just some cases where life is not able to continue after birth.  Also, if we know Whitney does have a condition that will allow her to live but may need specific, specialized medical care, we want to know so that we can get her that care as soon as possible.  Even seconds count when dealing with such a fragile, young life.  So, the results of this test won't change our actions, but hopefully it will help us to prepare our hearts and prepare our medical care team, if necessary.

Thanks for your prayers, all! We appreciate them!



Tuesday, December 8, 2009

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. :-)







Monday, December 7, 2009

She can hear!

Well, another whirlwind of a week is over and we are now into another week with more unknowns.  Last Friday we went and saw another doctor who wanted to do his own ultrasound.  To be honest this is becoming so exhausting knowing that every time we see Whitney we know that something is wrong and there is nothing we can do to fix it.  This last ultrasound really took the wind out of our sails (not that there was much to begin with).  The doctor told us that she had noticed that a part of Whitney's brain was missing, which we really have no idea what that means other than its missing.  We are also in limbo between doctor's and who is going to continue the care for Sheyenne and Whitney.  As always we know that God is in control and that he will be glorified through this process.


This past weekend was special for me.  We went to church as usual for our Saturday night service and we were blessed to have a guest singer, who was so so good.  He began the service singing my absolute favorite song "O Holy Night," and then for our special music time he sang my second favorite Christmas song "Little Drummer Boy."  During the service I really enjoyed those songs and loved worshiping Christ though them.  After church Sheyenne and I went out to eat dinner at a little sushi place by our house and somehow she mentioned that our baby can now begin to hear things that are going on outside of the womb.  I then began to think that she is totally apart of our lives and everything going on around us.  I love that my baby got to hear such beautiful music that is directed towards the birth of another baby, one that left perfection and came to this world. 


This Christmas season has already been more challenging than I could ever have imagined.  I was drawn to tears yesterday as I got out our stockings and hurt so badly inside knowing that all I want is to put one up for my daughter, and in that moment I lost hope.  I must remember that this is the season of hope, the time when God sent His son into the world, the time when hope finally was given a face.  The first verse of this song sums up this season, and I pray that we all may not forget what this is truly about.



O holy night! The stars are brightly shining,
It is the night of Our dear Saviour's birth.
Long lay the world In sin and error pining,
'Til He appear'd And the soul felt its worth.
A thrill of hope The weary world rejoices,
For yonder breaks A new and glorious morn.


Thursday, December 3, 2009

My Baby Girl

My name is Sean and I am married to the most wonderful woman in the whole world.  This past July we found out that we were pregnant for the very first time.  This was wonderful news since we had been trying for the past three years with no luck.  In fact, we had given up trying and were beginning the process to adopt a baby boy from Africa.  While we were waiting to hear back from the adoption agency we found out we had finally conceived! 


When we found out we were having a baby we became so excited.  My wife told half the world before she even told me!  Then she told me that we weren't going to tell people, which really did not stop me from being the most excited dad in the world.  We were able to tell my dad in person he was going to be a grandpa.  We gave him a shirt that had the word "grandpa" on it and he quickly glanced at it and then said thanks.  Sheyenne and I looked at each other and laughed because he had not read what it said, so I told him to look again and then it clicked and we all laughed. 


From the very beginning I knew we were having a girl.  No part of me ever expected to see a boy part and when we went for the ultrasound, and my feelings were confirmed when the doctor said, "you are having a girl."  In that moment I became excited and all of the arguments that I had with my wife about girl names ended and I saw my baby girl Whitney.  After we were done with the ultrasound the nurse asked us if we would wait in the waiting room while she showed the pictures to the doctor.  We knew what that meant and we began waiting to find out what was wrong.  The doctor came out and we began talking with him as he told us that our fairy tale  would not play out the way we imagined.  He told us that Whitney had a few soft markers that might lead to down syndrome and he wanted to get a second opinion on the ultrasound.  So we planned another appointment at Valley Children's Hospital. 


When we arrived two days later we had no clue what was waiting for us.  In those two days we prayed that our baby would not have downs and that all that was wrong would not be seen.  Well, three hours of looking at ultrasounds later, the doctors confirmed all that had been previously seen and found even more wrong with our baby girl.  Two meetings later and five hours total we left the hospital with our hopes dashed on the ground.  We were given very little hope that our baby would survive all that she was up against.  We had to go back two weeks later for a follow-up appointment to see if anything would get better.  Lucky for us, we had a trip planned to visit family and that visit was just what our souls needed.  God was able to fill our tanks up with great family, great friends, and great food! 


Yesterday we went back to the hospital for our follow up appointment only to find much of the same from our last.  Whitney has grown a little, but the areas where growth was needed she seems even more stunted.  The same complications were still there and the doctors gave us no new hope.  We rejoice because yesterday I got to see my baby girl yet again, and I long for the next meeting we get to have.  We have no clue how long we have with her and if we will ever get the chance to see her alive but I thank God for the few moments I got yesterday to see her again. 


We truly have no clue how this will play out, again the doctors really give us no hope.  But I do know one thing.  God loves my daughter more than I will ever know.  My prayer is for the miracle of life, to be able to see my girl and hold her in my hands and my eternal hope is that if I can't in this life I will in the next. 


The 145 Psalm verse 9 comforts me and reminds me of God's true nature.  It says "The Lord is good to all; He has compassion on all He has made."  This is my daughters story and I hope to be able to write more about her in the coming years.