Good first morning Lily Belle Litchford!

Easter Lily

March 31st, 2013 11:00am

    Happy Easter! Another first for Lily.  We are so proud she made it to celebrate our risen Lord with us today!  This morning, once again, my heart is full.  I have in my arms, as I type, my very own Easter Lily.  More beautiful, pure, and glorious than any other that graces the alters and crosses in countless churches around the world this morning.  

    Although I had done it before, last night I couldn't help reading all about Easter Lillies on the Internet. The trumpet shaped white flower, that shares a name with my daughter, has over the centuries, come to symbolize purity, virtue, hope, and life.  I can't help but to draw the obvious parallels to what my Lily means to me.  One only needs to lay their eyes on her sweet, serene face to see that she represents the picture of purity and virtue among all of human kind.   This brings me to something that our pastor said while praying with us the other day.  This stuck in my mind, because I don't think I had quite thought of it this way before.  He was thanking God for everything about Lily, and he said "thank you Gracious Heavenly Father that Lily will never know sin."  What a wonderful, relieving thought!  To experience this life without ever knowing the darkness of sin!  Even though Lily's battle with her broken and imperfect body, (which like all disease and death, is ultimately the result of all mankind's sin,) she will never be able to understand and experience the darkness that comes with willingly disobeying God.  This gives me great joy, as a father, for her.  It frames a picture of her as representing, like the Easter Lillies, the most pure and virtuous among us.  It also serves to reveal  by contrast my own filthy sins.  Oh how I, like my Heaven Father, hate sin.   I reflect the sentiment of the apostle Paul "O wretched man that I am! Who will deliver me from this body of death?" (Romans 7:24).  Why do we do it?  Why serve self, when we have the opportunity in this life to serve Christ and others?  Because we like Paul, and everyone else, wrestle with our depraved, self serving, sin nature, and we cannot overcome it.  But, there is hope.  The love that fills me for this perfect child with a broken body reminds me of the love of my Heavenly Father.  He looks on us with uncomparable compassion and love. This hope, is where my Easter Lily points me.  The hope we have in Christ. Who loved us so much that He took on the full consequence of our sin for us.  He fought and won the battle we cannot win, the battle of sin and death.  Just as I would, in a heartbeat, take the burden Lily carries so that she could have life,  so Jesus did for all of us.  She helps me to understand that better than I ever did before.  

    Lastly, Easter Lillies symbolize life.  It is not just this  physical life, but the eternal life promised to those who believe on Christ unto salvation, and sealed by his defeat of death which we celebrate this morning.  Jesus rose from the grave, and he has promised that we also will live again with Him, and those believers who have gone on before us, forever.  My Lily has made me begin to think about life a little differently than before.  First to appreciate the gift of this life, because the measure of it is so short.  Just this morning we had another breathing episode, and for a full 20-30 minutes Heather and I again held her hands, and did our best once again, to make sure she knew that, if this was her time, she would pass directly from our arms to those of her Savior Jesus, and not for one second would she be alone.  It was a tough battle, and she fought bravely.  And once again she decided not yet.  Almost immediately, the other kids were up and in the kitchen digging through their Easter Baskets.  The three of us got up and went in to join them, not wanting to let that experience go by without all of us being together.  I hope we continue to appreciate the present like that even when Lily has gone on.  Also, she brings me to think about the eternal life we have in Christ.  I find so much comfort in knowing we will be reunited again with her someday, and that she will be in the loving care of Jesus until then and forever.  Our Easter Lily  continues to minister to us every second. Thank you Lily Belle for ministering to me yet again.  And thank you Lord, once again for revealing yourself through her.

-Brian (Lily's Dad)

Mornings with Lily

March 30th, 2013 9:15am

    It is Day 3 for Lily Belle, and as I sit here holding her, and listening to the rain falling outside, it occurs to me that a tradition has developed, which is that mornings have become  daddy and Lily's time together. Mommy usually stays up with her as long as her body will allow, but "although the spirit is willing, the flesh is weak", and even the super human strength of Lily's mom is subject to shear exhaustion.  For anybody who knows me, will know, that this is extraordinarily ironic. For I am NOT a "morning person".  But, Lily has changed that for me in these last three days.  The mornings are the only extended time we have alone together, just the two of us, and I love it, as I love her so very much.  

    That first morning in the hospital, we got to watch her first sunrise. From our  fifth floor room with an beautiful eastern view, it was a full experience. She looked so incredibly serene in that newly born sunlight.  I simply had to snap some pictures in an attempt to capture that image.  Pictures never do seem to fully capture beauty quite as well as I wish they would.  But, I suppose that is why God gave us memory.  Her face is perfectly preserved in my mind, in that moment, forever, and that perfect image belongs only fully, to me.  Speaking of special moments that are only her's and mine, later that morning I got to take her to the nursery to give her, her first full bath.  I won't lie, the nurse did most of the work on that one, but I helped, if only in that awkward "dad way" when it comes to caring for a child. Then something surreal happened, a lady with a full sized harp came in and began playing for us during bath time. Lilly loved it. So did dad.  When we finished, the nurse handed me the prettiest girl in the world, (it's a three way tie for me really).  And while her nurse went to get some paperwork, I asked the harpist if she could play "Canon in D" by Pachelbel.  She  said nothing and only smiled, and then began playing the most beautiful rendition, of my favorite classical piece, that I'd ever heard.  And Lily and I shared her first dance.  This belongs to just Lil and me, and I will cherish it forever. God is so very good, thank you.

    Our second morning together was a little rough. That was our first night at home, and nerves and worry kept both Heather and I awake most of the night. Lily had several of her apnic episodes the early part of the evening, each time we hold her close, hold her hand, kiss her and talk to her, and do our best to make her know we are with her. So far, each time, she has managed to fight her way back. She is so strong. It comes from her mother. But these repeated traumatic, and fully mortal events had left us physically and emotionally spent.   As a result, that second morning was a blur. Lots of exhaustion, lots of emotion, but still rewarding. Lily and I both spend that morning contending with the flesh, and both of us, at times, felt we were losing. The most positive emotion I felt is best described as love and thankfulness. The other emotions are far to dark to share.  In the most intense moments, the words that pour out are that; my heart is so indescribably full, and yet breaking at the same time. I can tell you that one of the many things that God has shown me through our experience with Lily is how to pray in the Spirit. I had never really and truly experienced that Biblical concept until my second morning with Lily. Left broken of any and all will of self, and totally submissive to the will of my savior I could only point my face toward heaven and call out the words given to me by the Holy Spirit of God. I have nothing worthy of offering to The Lord, so I offered up what the Spirit gave me, and found myself truly repentant and grateful for His grace and His mercy, and for giving me even one moment with this perfect child. And then my body could take no more. My mother came over to watch her and Heather and I finally slept, if only a couple of hours. We went on to have a decent day, with several visitors, and lots of commotion. We even had a little photo session with the kids.  And, the evening ended without any breathing episodes. We actually started to feel like we had shared her a little too much that day. I know that may seem selfish, but that is how we felt anyway.  Its's just that time is so limited, and although we want to give her a little to everyone, we want to keep most of her for ourselves. To savor each millisecond with her and her family.  And so I find that even in this selfish way I find myself infinitely blessed, because the mornings are only mine and Lily's.

   This brings us back to Day 3, this morning, here we are together again. It's quiet, her mother is finally sleeping, it has started to rain, and we are spending our time together. I'm praying again this morning, this time that there will be no lesson missed as we spend more time, gifted to us by the Almighty Creator, with my daughter. She had a little apnic fit a while ago, just in case I forget, for even a moment, that I am being taught to live fully in the present. However, she recovered quickly this time, and I didn't even have to wake her mother. I could sit a watch her for hours and hours and not even begin to get bored. I can't stop kissing her, every time it occurs to me, which is alot. I suggest, that anyone who can, do the same with  their own children. You just can't comprehend how precious it is to have the opportunity to kiss your children, so don't ever let a single chance go by without indulging. When I do, I think my prickly old whiskers must tickle her little cheeks because she smiled a little at me this morning. This revealed her little dimple on her right cheek. A little hereditary gift from her papa Litchford, and shared by her brother. She makes it look prettier than they do, sorry, but she does.  She has another photo session this morning with a photographer who is a friend of a friend, and who's services were provided to us for free. So many people have been so gracious to us these past few weeks, and especially these last few days. It encourages me, and gives me back some hope in humanity to see genuine compassion from so many people.  Everyone knows how cynical I tend to be. Here is yet another way Lily has ministered to me, by showing me that there is good in people, and particularly people bought by the saving blood of Christ. What would this world be if Jesus had not come when he did to bring light and love back into this dark and self-serving world? Thank you, to everyone who has shown genuine love and concern for our family, and thanks and praise to our Savior, who's ultimate act of love, has made it possible for us to reflect that love to others. 

Thank you Lord for Lily

    Many of you know, although some of you may not, at around 34 weeks, Lily was diagnosed with a genetic condition called Trisomy 18, also known as Edwards syndrome.  This is a chromosomal defect that occurs at conception when there is an extra chromosome present in the 18th position so that there are 3 chromosomes instead of the usual 2. It is the second most common chromosomal defect behind Trisomy 21 aka Down's syndrome.  It occurs in 1 in 5000 to 8000 pregnancies and is a random occurrence with no correlational ties to outside causes, and is not hereditary. Unfortunately, the prognosis is the worst for babies with Trisomy 18, with most pregnancies that make it to term being stillborn. A small percentage of babies live for several hours, days, or some even weeks, however greater than 90% pass away before 2 to 8 weeks. Those very few that live beyond that period will suffer from severe physical deficiencies affecting nearly every vital organ which makes them unable to sustain life for any extended period.  I would like to point out that it is not a disease, or an illness which can have a cure, but is genetic defect affecting every cell in her body.  This means that it is as much a part of her as the color of her eyes or the shape of her feet.  I point this out to say this; although we believe that The One who created the stars with a word, has the power to remake her  whole again, we must accept what He has shown us that He has for Lily and us.  Although we continue to pray for healing, we know we must accept the burden God has chosen to allow us to carry, and we submit to His will, as He "works all things together for good." (Romans 8:28).
    Having summarized the condition, let me say that by the grace of God, Lily has already beaten the odds. Having been born alive, and staying with us for nearly three days now, she as proven to be exceptional, (90th percentile). I love to brag when any of our children achieve such a status in any aspect of life!  But this is not the only thing exceptional about Lily Belle.  She has proven to be such an important part of our family.  We give praise to the Creator and our Savior for allowing us to have some time, no matter how short, with Lily. And we are so thankful for what she has already added to our lives.  I don't want to pretend that we are not devastated and severely heart broken about the circumstances of our inevitably coming loss.  It hangs in the air every moment. However, we want to do everything we can to fully savor every moment God allows us to have with Lily.  Therefore, we will do our best to be obedient to God's word, and resist the urge to mourn until God's appointed time for us. (Eccles 3:1-8).  We fail a lot, but by God's grace, we continue to try.  I am setting up a blog so that I can share my thoughts from time to time with any and all who care to read.  It is my attempt, in some small way, to share a part of what God is showing us though his vessel Lily Belle.  This message will double as the first post.  Thank you all in advance for all your prayers, and the compassion everyone has already shown us.  God bless you.

- Brian (Lily Belle's dad)