Colby and Ellen

Yesterday marked another hard day for me on our journey with Judah.  It was his third consult with the plastic surgery department docs at CHO.  We had our first appointment in about a year last month and after leaving, I felt totally overwhelmed at the thought of surgery around Judah’s second birthday.  We made a follow up appointment with both of the Microsurgeons specializing in hands so that they could look at his anatomy and x-rays together and talk through how they would accomplish their “work of art” as one of the surgeons said.  Of course the only day and time where both doctors were available was a morning after I’d just worked a 12 hour night shift and Colby was in class, and therefore, unavailable to come with me!

Thankfully, God has placed some amazing women of faith around me that always come to the rescue!  Caitlin stayed with Eden and Megan drove from the City (aka San Francisco) to meet me at our house and drive all the way to the East Bay (aka Berkeley/Oakland) so I wouldn’t have to go alone.  Thank you so much girls, don’t know what I’d do withoutcha!  When we got there, they were running behind so even though our appointment was at 10:15, we didn’t get into the exam room until almost 11:30!

I was armed with my list of a million and one annoying “nurse mom” questions ready to walk out of there feeling victorious and prepared to face this surgery head on!  That feeling was shot down after about five minutes.  The plan we had become comfortable with on his right hand was a process called policization.  This is, in a very basic nutshell, turning his index finger into a “thumb” by making a bigger space between the index and middle finger and wiring the index finger to go under the rest of the fingers, like a thumb would.  On his left hand, they would try to do the same thing with his “tiny thumb” (what we have affectionately named the super small, somewhat deformed digit on his left hand).  We knew it would be harder on the left side, but still possible.

As they were looking yesterday, it became clear that the new plan of care for the left hand would be to amputate the “tiny thumb” and turn the index finger into the “thumb” making a three fingered hand…but one that would likely be much more functional.  Boom.  That was such a blow to hear the word “amputate” in a sentence talking about my little boy.  He went on to say that, of course, cosmetics were totally out of the equation and was totally beating around the bush…I finished his sentence knowing he was trying to say (in the nicest way possible, of course) that his hand already looked abnormal, so it would be better if it looked a little more abnormal, but was at least functional.  They went on to say that the plan would still be the same for the right hand, but they would probably want to do the left hand first since it had better blood flow to the index finger than the right.  I left the exam room feeling totally overwhelmed again with an appointment to come back in three months.

On the drive home, I was talking to Megan about everything and saying that I realized that if taking away his tiny thumb would be the best thing for him functionally then I would totally want to go ahead with it, but it was so hard!  It was just a tiny thumb, it’s never been able to move, it looks kinda funny, so why did it feel sad to hear that it needed to go?  Because, even though he never used it….that tiny thumb is part of him. It’s part of what makes Judah Brewer my little Judah Boy.  I tried to choke back tears as I said, “It just feels so wrong to think about changing something about your baby that God created.”  I know that God has allowed us to be in a place where Judah can get the therapies and surgeries to make his life better and his arms and hands more functional, but it is so hard to face the fact that Judah has Holt-Oram Syndrome, it will affect his life for the rest of his life….and there is nothing we can do about it.

We know he will overcome, learn to do everything his own way, that God made him this way for a purpose, that every child has their own individual challenges to face and on and on and on…we’ve heard all of these things from everyone since the day he was born and we know they are true.  BUT that doesn’t make days like yesterday any easier and some days, you just have to let yourself be sad…let yourself mourn the probable loss of a tiny thumb.  The mother’s heart beating in my chest just needs to take a day or so to cry a tear or two and be sad before I can buck up and face the next challenge, head on.  The mother in me has to deal so I don’t let anger creep in as I hear other parents talking about the issues they are facing with their kids…they seems so small sometimes and it is tempting to point that out!  But I don’t want to let jealousy and anger take root and allow bitterness to grow.  I need Judah to see that we are more than conquerers through Christ and even though we are pressed, we are not crushed.

We need prayer for strength as we get the paperwork together to get a second and possibly third opinion at Shriner’s Children’s Hospital in Sacramento and maybe Stanford’s Lucille Packard Children’s Hospital in Palo Alto.  We need wisdom about which surgeon will be best for for Judah.  We need to peace to know that even if we move away from the Bay Area after Colby graduates next year, God will provide a way for these surgical procedures to be completed with the surgeon that started them.  All and all, we just need to abide in our Lord, Christ Jesus.

After a wonderful day celebrating the Risen Lord on Easter with family (yippee for my sister being here!) and friends, I had a moment alone to contemplate what Easter means to me this year.  Everyone has a path that, in part, forms who they become and how they see the world.  It took me only a few short months working as a nurse to realize that I had a choice to make: harden my heart to the experiences I had at work in order to prevent being hurt again and again…or allow my heart to break again and again in order to minister and care for people right in the trenches of their hardship.  I never dreamed these hardships would become personal in addition to professional with my own child one day.

I often want to blog about my experiences at work but I always hesitate because it is often, in Colby’s words, so “morbid”!  I am also quite concerned speaking about particular times or circumstances for the sake of my patients’ privacy and my own professionalism…but tonight, I feel it’s important for me to let the flood gates open (a little…) about some of the general things I see and feel on a somewhat regular basis because the end of this sad story is such a happy one!

There are a handful of close friends and family that have the blessing/curse of helping me “debrief” from different scenarios at work…some are hilarious and some are just downright sad and sobering.  The first time I cared for a child that was dying was the first time I really felt like I saw the ugliness of sin, and the resulting broken world we live in.  Watching the struggle to hold on to life and the agony and sting that death holds even for some of the tiniest and most innocent lives is painful, heartbreaking…it’ll mess you up. The last couple of years since only doing neonatal resuscitations in the delivery room, having kids of my own, walking with friends through tough seasons of life, and continuing to research and pursue a life dedicated to orphan care- I feel like I’ve seen so much, too much.  And you know, keeping it inside just gets to you.

Hearing that dreadful alert for an emergency c-section and rushing to the OR to quickly prepare your equipment, almost holding your breath with the words “Uterine incision.” from the surgeon knowing it is almost “show time” and hoping it’s a “boring episode”.  Feeling the adrenaline pumping as you and your team literally hold the line between life and death…and the crash you feel afterward regardless of the outcome.  Comforting a mommy holding her sweet baby that was born into Heaven rather than staying on Earth to fulfill all of the hopes and dreams of their parents.  Being with people that I don’t know, people that I do know and even myself, experiencing the painful question of, “Why does disability exist in the world, Lord?!”  Thinking of my own sweet boy who is moving toward having his first big reconstructive surgery and knowing the intense pain that will follow.  Hearing the plight of orphans, both here and abroad, that must fight their struggles alone and afraid.  I’ve battled many a spiritual battle in my heart and mind going to the depths of sorrow with patients, with close friends, with my own family.  I’m not gonna lie, it’s a huge burden to carry around (when I try to do it alone, that is!).  But you wanna know what it all boils down to?  Death and sorrow and disability and orphans and pain and suffering and despair…what they all boil down to is the ugliness of sin and the Fall of Man.

There in the ground, His Body lay, light of the World by Darkness slain.  Then bursting forth in Glorious Day, up from the Grave He rose again!  And as He stands in Victory sin’s curse has lost it’s grip on me.  For I am His and He is mine, bought with the Precious blood of Christ.

What a glorious thought that all of these horrible things (as a result of sin in our fallen world) have already been defeated on the first Easter morning when the stone was rolled away from the Tomb!!!!!  I am humbled by my experiences and all of the hard things I’ve seen that many people never will because, although it sometimes seems that they highlight the dark sadness in the world, they also highlight the victory we have in Christ and his triumph over sin and the grave.  Lord, give me the eyes to see your victory in a world of so many injustices, knowing that You are coming again!

He is Risen!  He is Risen, indeed!

I have found myself wondering over the last couple days – once again!!!! – asking the question, “Why?!”  Why in the world are we going back and forth to the hospital again…and this time with our “healthy” child?  I’m not 100% certain I know the answer to that question or if I ever will understand all of the trials we’ve been through over the last couple of years, but I am certain that I have had so many wonderful moments being reminded of God’s faithfulness to us!  Today was no exception to that rule.

We are just so, so tired.  This makes night number three spending the night in the hospital with Eden and I think those two nights combined I’ve gotten maybe six hours of sleep and a couple short naps in the afternoon while Eden was napping.  I can feel my strong Momma walls begin to break down.  As much as I tell myself this is a cake walk compared to Judah’s hospitalizations, it is heart breaking to hear that tiny, hoarse little cry coming from the “jail cell” hospital crib, hold my sweet baby burning up with a fever and wipe away the little dried up tear crust from her eyes.  One of the worst parts about this hospitalization compared with all the others is that Colby and I are separated.  I’m here with one patient, and he’s at home with another patient…we don’t have each other to keep going and picking up the slack when the other is just too tired- and that’s hard. As I was driving back alone to the hospital tonight, I was reminded of a few verses in Proverbs…and I’m so very thankful for the girl friends in my life that come alongside me in hard times.

Proverbs 12:25 says, “An anxious heart weighs a man down, but a kind word cheers him up.”  and Proverbs 17:22 says, “A cheerful heart is good medicine, but a crushed spirit dries up the bones.”  I love the truth of Scripture!  Thanks to the kind words and deeds of good friends, I received a great, big dose of the world’s best medicine- a cheerful heart…my burden is not so heavy now.

Yesterday, Megan dropped any afternoon plans she may have had and crossed the bridge to come and stay with (a very grumpy) Judah so that Colby and I could have some time together at the hospital with Eden.  I left Colby with Eden for the evening so I could be with Judah for a little while and put him to bed.  I only spent a few minutes talking with Megan about this and that and updating her on the latest with Eden…but it lifted the heaviness of my anxious, tired heart (not to mention filled by belly with yummy Pioneer Woman tortilla soup she made for us!).  Then today, Caitlin came up to the hospital for a few hours just so I wouldn’t be so alone (I mean, we are literally the only patient in this tiny Peds unit!).  She held and loved on Eden and we talked about nothing super important…summer plans, their second baby, kids music and we made a quick stop in the super cute baby gift shop in the hospital and drooled a bit over the frufru, overpriced baby gifts.  Again, nothing extraordinary was imparted to me, just the fellowship of good friends.  Lately, I know God has been teaching me that no matter where we go (who knows if we’ll ever make it back “home” to Georgia?!) He will provide a loving family to care for us and pray for us.  He will place people in our paths that, when the going gets tough, we can call in a pinch and not feel paranoid about “inconveniencing” them simply because the Church is becoming our family- and you can do that to family!  This is the only way that we’ve made it through the last couple years being so far away from our biological families…we miss them dearly!!!  The kindness shown to me was just the right dose of medicine I needed!

I bet you these gals didn’t realize that they were in the medical field too.

Well, as predicted…I’ve totally not stuck to my “Thursday night goal” of writing.  Oops.  Anyway…  This past Friday was my birthday!  My 27th birthday.  Although not a typical “milestone” birthday, this one was especially nostalgic, in a funny way…

That is because about 7 years ago, I was getting ready to have a HUGE yard sale to help raise money for my first mission trip to Africa.  There was another someone preparing to go on the trip as well.  While tagging a million and one beanie babies, board games (even played a round of Hungry, Hungry Hippos!), and clothes, unbeknown to me, I somehow started falling in love with a man who had been literally right in front of my face my entire life.  While sitting outside ALL day long (and making $700!!) talking with Colby (he was the guy for those in the crowd that didn’t catch on), Tiffany and Jen; Colby made an offer and we shook on it.  If neither of us were married by the time we were 27, we would marry each other and move to Africa!  We had a good laugh and made a few more jokes and went on enjoying our time as Garage Sale hosts.  Oh boy, if I had only known!  Looking back at the irony of this statement makes me realize a couple things: 1) We must have thought 27 was semi-”old” if that was when the “back up plan” was to be implemented.  2) We actually thought we had ANY control of the direction our life adventure would take us!

Fast forward to my actual 27th birthday… I’m not old (but I did just see three verrrrrry ugly gray hairs sticking straight up while washing my hands a minute ago!) although I feel like I could never have imagined the life experiences that God would give me in that seven year period…He’s given me wisdom some folks will never experience- I’m grateful for that even if that means lots of tired days and a few extra gray hairs.  I also find my self married to my garage sale man and he is more than I could have ever dreamed a husband could be…God so knew what I needed.  We haven’t made it permanently to Africa (yet!) but we moved to San Francisco and boy does that ever feel like a different planet some days!  And I’m not 100% sure how it happened but somehow Colby and I are parents to the cutest and  sweetest little boy in the world and the cutest and sweetest little girl in the world!  (And no, we are not biased…at all…Ok maybe a little.)

Back to my b-day…  I was having a very “grown up” birthday that consisted of wearing an old t-shirt with jeans all day while wrangling two little snotty, grumpsters (more on that in a bit!) while Colby was gone and admittedly having a bad attitude that he accidentally turned in the 17th as an available day to work.  I knew he’d set up for a babysitter so we could go out to dinner (thanks DeeDee!!!) but I still had a bad attitude to work through.  I finally decided I was totally acting out of my selfish, sinful side and forced myself to have a good attitude so as not to ruin a nice dinner without the kids (and not be too upset that my b-day presents were a couple of clearance running shirts with a 50% employee discount from Colby’s work).  I’m glad I did… We had a great time laughing about stupid college stories and “the” garage sale.  I thoroughly enjoyed my first cheat on my Weight Watchers diet (no I did not even attempt to calculate the points for our appetizer of deep fried macaroni and cheese dipped in cheese fondue! mmmmmm!).  And we just enjoyed the company of some good, intelligent and complex conversation without feeding a little baby bird in a high chair and rocking the carseat hoping that Little Miss Sunshine would just stay Sunshine-y through dinner at the restaurant…and that was enough for me!

But as Colby was paying the bill, he put a little brown box in front of me!  It was a beautiful blue sapphire right hand ring.  I was so surprised!  I’d wanted one for a while now, but hoped to get one maybe for Mother’s Day one day or a milestone Anniversary.  He told me how much I deserved an extra special gift for all the hard work that has gone into the last couple years since moving out here – and I knew he meant it.  Man, I’m a lucky gal!

As for lesson #2- we were, once again, reminded that our steps have been ordered by our Creator and we are along for the ride to bring Him glory!  The very next day Judah’s little snotty nose cold and cough had gotten worse and his breathing treatments were no longer effectively treating his wheezing and Eden was now running a fever too.  Of course, they didn’t have anymore appointments at the after hours clinic so we were off to the ER.  Thankfully, they sent us home with some oral steroids in addition to his breathing treatments.  Eden’s appointment was the next morning where she was doing ok, but her breathing became labored later that evening so I was off to the ER with her the very next night!  Bummer we were not as lucky with her- she was admitted to the Pediatric floor.  So here we are going back and forth to the hospital, yet again…but hopefully she’ll come home tomorrow!

The Lord has taught me through my birthday reflections that periodically I may think I’ve got it figured out, I may think I’ve got it all under control…but then reality hits.  It’s so beautiful some days and it is so hard some days.  His way are truly higher than our own, and I, for one, am grateful.

Lots to say today…  This has been such a crazy, CRAZY season adjusting to life with “Irish twins”!  But we are trying to “normalize”: I started back to work this past weekend and Colby heads back to class this week.  Although don’t hold me to it AT ALL…one of my goals is going to be to write at least a short entry every Thursday night.  I don’t ever work on Thursdays and Colby has class at night.  So my idea is that on those nights after the two little buddies are tucked in I’ll have time set aside to write – if for no other reason than to chronicle my crazy life right now because I feel certain with all the sleeplessness that will occur with two tiny kids and working nightshift, I’ll never remember all the “stuff” I’ll be pondering

Now on to something totally unrelated.  This is also a season of a lot of “soul searching-ish” stuff for Colby and me.  We are beginning to see the time wind down for our life at Seminary now that he only has a year and a half left to go (maybe two years, but we’ll just have to see).  What in the world are we going to do after that?!  Our plans for moving overseas are on hold until Judah Boy’s medical care is a little more stable so we are just a little stumped.  It’s led to endless thinking and “what if’s” and what I like to call “window shopping” on Craigslist for an apartment in the City (aka San Francisco) just because I’m getting so tired of life without a dishwasher, washer and dryer in the house and maybe a place with enough room for a real dining table for family dinners?!  It’s been easy to complain and get sort of a “poor me” attitude.  So I’ve reluctantly been praying for God to change my heart and perspective (I mean, it’s sometimes kinda hard to let go of being the “victim”…right?).  The past few days I’ve really felt led to write this entry, with this specific title- Heroes of the Faith- as some sort of tribute-ish/encouragement/edification to the Body of Christ about those that I find myself surrounded by that truly humble me to my knees and spur me on to finish up one more sink of bottles with a good attitude, and labor on in my role as Colby’s ministry support, knowing that this is where I’m called (for now, at the very least- maybe for a long time?  I’m glad God knows!).  Some of these folks I know very well, some of them I hardly know at all, but they encourage me, challenge me.  I hope that for those of you nestled in a comfortable lifestyle, maybe they’ll ruffle your feathers a bit too and motivate you to sacrifice more!!!  I’m finding it a bit hard to even know where to start, so bear with me…

When I look around me, this is what I see:  singles, couples, and families that sold almost everything, packed what they didn’t and moved across the country to answer a call.  I see large families living in tiny apartments on even tinier budgets to the Glory of the Father.  I see intelligent (I mean genius, really!) people with multiple degrees working at Starbucks, grocery and retail stores, babysitting- whatever it takes- to financially support themselves as they labor in ministry jobs where there is not enough funding for pay.  A woman who left the comfort of a successful career to answer a crazy call to do more than she thought possible of herself for the Glory of God, the Father.  Several families that sometimes wonder if there will be enough in the bank account to cover all their food and bills but somehow bring meals and encouragement to those in need around them.  Couples who are patiently awaiting God’s answer to the next step for their plans to do International missions, while working really hard jobs…and some that cannot find jobs at all!  Families that left the “creature comforts” of home where grandma was just down the street to babysit, lived in a nice, big home, and business was booming, so that they could mend the brokeness of a congregation in great need.  I see dads who have the courage and love to care for their children and wives unashamedly in a culture where men are largely absent from the home (I’m married to one of these!).  Women who trust their Lord first and then their husbands to lead and guide them when it is totally socially unacceptable to be a submissive wife.  A family affected by a special needs child that could have retreated home where it would be easier with family support, but are weathering the storm and beginning a ministry in obedience to our Great God.  Those suffering from the pain of infertility on a campus where every other day someone else is expecting.  A couple who sees the opportunity to share the Gospel rather than embrace bitterness towards a doctor that had an “I told you so…” attitude after loosing a baby when they refused certain tests.  A family that sacrificed a two income household so that hundreds of meals can be served to the hungry poor coming in off the streets of San Francisco every week.  A man who delivers pizzas so that his wife can be a stay-at-home mom to foster kids.  I am surrounded by those who humble themselves to what the world may see as a low status in order to influence a City that is so empty, yet filled with so much hopelessness.  These are not the folks who read books like Crazy Love and Radical and nestle back into their comfortable lives…these are the people that are living radical, crazy loving lives while serving the Bride of Christ.  These are the people that keep pushing me to keep my head up, keep going- running toward the Prize, step out in faith to do things I never thought were possible and, to be honest, never cared.

These are my Heroes of the Faith.

I’m finally getting back to blog!  After a way too long break with WAY too many things to update on…I’ll give the brief short version and then move on to the star of this blog- Eden!  **I’m already feeling the pressure as a mother of two to keep things “fair” or “equal”…so I’m making myself include this little disclaimer:  I share some honest feelings about my pregnancy with both kids in the post…but would like to include upfront that although sadness and shock and many other emotions were felt, I was never sad about the life of either of my kids and have rejoiced at the thought of them since the day I knew they were on the way!  In our family, I never want Judah to feel sad because he’s not “normal” but I also never want Eden to feel left out or in the shadows because she is “normal”!  God, give me the wisdom to parent my children that “normal” is not what matters, but rather, that their aim be to bring Glory to Your Name!

At about 34 weeks gestation in my pregnancy, I found myself having regular contractions in the middle of the night and thought to myself, “Here we go again!”  Some super sweet friends came down to be with Judah (thanks Joe!) and we headed to the hospital.  They were able to stop my contractions, but I was told no more work and to be on “modified bed rest”.  (That is super hard with a 10 month old at home!!!)  At 35 1/2 weeks, same thing…they were able to stop contractions and we went back home.  Thankfully, my mom thought this was a good indication that she better come out a little early!  And it was a good thing because at 37 weeks, same thing happened again and this time she was “cooked” enough to come on out!  I had a repeat c-section on October 27, 2011 and our sweet girl made her way into the world at exactly 6:50 a.m.  Now, onto Sweet Eden.

If you know me well, then I’m sure you’re not surprised that there is a bit of a story and meaning behind her name- and I thought it was time to tell it!

While driving home from work one day (before we had kids) I was listening to my new Phil Wickham album, and the first song is called “Eden”.  It was one of the first times that I had really thought in depth about the concept of the Biblical Eden.  A place with no pain, shame, fear, sin- but, most poignantly, never ending, physical communion with God!  I thought about the devastation that The Fall brought to every aspect of life as we know it here on Earth and the deep sorrow that we would never get to experience Eden like Adam and Eve did…but the joy that filled my heart knowing that the story did not end there was almost overwhelming.  We humans totally screwed it up, but thankfully, it doesn’t end with our screw up…

I then started to think of how the concept of perfection and Eden and how, on hard days, I just longed to be in that place rather than the reality of the world that we live in.  Meditating on perfected communion with God, the Father reminded me of the redemption that we have in Christ and that although we will never be in Eden, one Day, Believers will experience the same serenity of a painless and perfect world, unmarred by sin and shame- and all of this through the Blood of Jesus Christ!  I still love to think back on Eden, because it points me onward to persevere through the hard days in life.

Fast forward to about 9 months ago when we (SURPRISE!!) found out we were pregnant again!  I couldn’t have imagined all that this sweet girl would teach my heart about miracles and the Redeeming Lovingkindness of God, the Father.  In fact, I think I sort of just assumed that it would be another boy, since that was my only point of reference…I’m so glad that His way are higher than our own!  We had talked about names before, so when we found out it was a girl, we immediately knew that she would be Eden Elizabeth (Elizabeth is a very strong family name on both sides).

Looking back, it was a scary pregnancy where, around every bend, I was waiting for something bad/similar to the complications I had with Judah to appear…but they never did!  I wanted to make this pregnancy one without regrets, though…I wanted to embrace the good parts!  It may sound stupid, but after Judah was born early, I so regretted being too cheap to buy cute maternity clothes because they were “temporary” (boy, if I had only known!).  I was sad that the fun things about being pregnant were stolen from me when we found out that Judah may not even live after he was born…everything was tinted with sadness and fear of the unknown as much as we tried to overcome, and each doctor’s visit was so disheartening because they ALL brought more bad news.  Having my little one taken to the NICU instead of watching happily as he got his first bath and then came to cuddle with mommy, the joy of being wheeled out to the car with my beautiful, healthy baby in his carefully selected “homecoming outfit”; the opportunity to nurse my baby at home from birth and on; my very health jeopardized and, therefore, clouding my perception of when Judah was born and many other “happy” moments- ALL of these stolen by the Enemy.  I feel like I’ve never felt the heaviness of Truth in John 10:10 more than in those dark days, “The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.”

I am so glad that I serve a God who never thinks any heart break is silly or unreasonable and that He seeks to give perfect gifts to His children, because after all the sadness and loss felt in my pregnancy with Judah, in comes little Miss Sunshine!  Practically no morning sickness, nothing negative or scary at any of my check ups and…I bought some cute clothes!  My little girl stayed with me right in the OR until they were finished with surgery and I got to watch as she screamed through the first part of her bath and loved her shampoo!  I got to hold her in the recovery room, and on the stretcher down the hall to my post partum room and say, “Thank you!” as everyone that passed by congratulated me…she never left my side!  She’s been a GREAT eater from day one, sleeps well and is happy almost all the time!  I got so choked up putting on her “homecoming” outfit (complete with girlie accessories, of course!) and I felt overwhelming mixed emotions of pride, joy, thankfulness as I was wheeled out to my car…this time with my baby in my arms and everyone ooo-ing and ahh-ing as they passed!  All of the things that had been taken away from me, God had restored to me and healed my heart of so much pain…He knew we needed her in our lives much more than we could have ever guessed.  I feel like this time around, I’m learning the meaning of Ecclesiastes 3:11, “He has made everything beautiful in its time.  He has also set eternity in the hearts of men; yet they cannot fathom what God has done from beginning to end.”

I know that his whole life, Judah will hear that he was a miracle baby and that God (literally!) saved his life several times, and that is so true.  But, I want my daughter to hear that she was a miracle baby too!  I feel like I’ve learned that the miracles she brought to our family were the simple joys of a newborn that most people take for granted…but not me!!  I’ve thanked God so many times for these simple moments that I may have otherwise completely overlooked.  I marvel at this because the Lord is already weaving the story of their lives as individuals and as members of this family together…they each have such powerful truths that they have taught their Mommy (and Daddy!), and already, both their lives are testimonies to God’s goodness and grace over our lives.

I can only pray that every time I look at the sweet face of my beautiful little girl or hear someone call out her name, that I would be encouraged to look back at the redeeming love God gave us in her and to look forward to the promise of our coming King to restore the beauty and perfection that were once found in Eden.

I’ve been on a journey the last maybe three weeks or so where I feel like I have closely identified with the Psalmist.  Reading through Psalms, you find so many chapters that begin almost in lament or “Why?!” “How long?” or expressing discontent and by the time you get to the end of the chapter, he is praising God for victory and for who He is!

So many times over these last few weeks, I’ve been comforted by the words of 2 Corinthians 4:8-9.  ”We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.”  Let me explain…

Judah was scheduled to have a procedure done in the “Cath lab” to close one of the holes (his PDA) in his heart on September 26th.  Although this is a relatively “simple” procedure (on a heart anyhow!) and he will only have to be in the hospital for one night, it was still a major stress point for mommy and daddy!  I’ve had nightmares about watching the OR doors close behind Judah with me on the other side since I was pregnant with him and knew some type of surgery would be in his future.

A couple weeks ago, I found out that a TON of hospitals in the Bay Area chose this time frame to go on strike!  This included Children’s Hospital and also the hospital where I work (which didn’t effect me work wise because my department is non-union).  But this meant the idea of “travelers” that were not familiar with the area/hospital would be taking care of my sweet boy!  This made me very nervous, but I have a friend who works at CHO who volunteered to cross picket lines to take care of him- crisis averted!  I called our Cardiologist just to make sure it would not be better just to reschedule (which we did end up doing for tomorrow, September 27, once the strike is over) and left word for him to call me back.  When I got a call back from him, I was surprised to hear that he wasn’t specifically calling to talk about Judah’s surgery, but rather the results of a test called a Holter monitor (a box that Judah wears that records his heart rhythms for 24 hours).  He was calling to say that he saw periods of what they call Complete Heart block where the “electrical work” of the heart is not properly working so the atrium and ventricles beat off sync with one another.  He explained that although Judah’s did not look serious now, it was a possibility for him to need a pacemaker when he’s a big boy and closer, long term monitoring of his heart rhythms.  Wow, what a blow.  I was sitting in our office at work and had such a hard time being brave and fighting off tears.  Although it wasn’t dangerous now…it was something else!

Later that week, I was trying to get all my paperwork ready for my maternity leave and got some really disappointing news from Human Resources.  Since my maternity leaves are so close together, I am short 35 hours for being eligible for extra bonding time off from work after my medical recovery from my c-section.  So while I was expecting close to 4 months off work to get our crazy new life settled, it looks like I’ll have to be settling for about 2 months instead!  Also, part of this will likely be totally unpaid leave and they’ve changed policies so the rest will be 2/3 of my salary instead of 100% like I had with Judah.  Again, sitting in the office at work, I couldn’t hold back the tears on this one!  I have to admit that I’m pretty terrified about the difficulty level of this transition and feel so sad for Colby having to “go solo” so soon in the game.

Lastly, everything in my pregnancy with Eden so far has been textbook perfect…something we have not taken for granted and have been SO thankful for!  The last week or so, though, I’ve noticed that I’ve started itching…all over!!! At first it started out as occasional on my back and I could pretty easily ignore it, but as time went on, it’s moved on to my arms, legs, face…everywhere!  I was thankful to have an OB check up appointment today as the itching is worse than ever today!  After talking with her, my fear was confirmed…she thinks that there is a good chance I’m developing something called cholestasis.  Simply put, it is a liver problem that causes you to have a high level of bile salts in your blood stream that cause you to itch.  This can also put me and Eden at higher risk for a stillbirth.  I had some lab work done to confirm one way or the other if this is what we are dealing with and should know by the end of the week.  If the labs come back positive for cholestasis, then I’ll have to begin going to testing twice a week to make sure Eden is doing ok in there and likely deliver a week (maybe two) earlier than planned or if she were in distress, of course.  If the itching gets really bad, then there is a medication I can take to help alleviate some of the discomfort.

Throughout all of this, I’ll have to admit that I’ve said to the Lord a time or two, “How much more do you think we can take?!”  And the 2 Corinthians verse came to mind every, single time.  What a relief to know that we can be stretched to the max, but God would never crush us, destroy us, allow us to suffer in the depths of despair or abandon us!  And how have we seen this play out in our everyday life?  The Body of Christ coming alongside us and helping carry the burden when we just cannot even pretend to put up a front of “being ok” with all of this.  Several of our sweet friends, Caitlin and Stephen as well as Sarah have insisted on sharing the responsibility of bringing us meals the first whole week after Judah’s surgery!!!  It is sometimes hard to humble yourself to accept gifts and acknowledge that you don’t have it all perfectly together, but it will be so nice to have one less thing to be concerned with (even though they say Judah will be totally recovered by day two, I may be in a corner somewhere scratching to death !!!!)  Knowing that people around us who have heard each step of the way all our challenges are praying for our strength to take one day at a time is worth more than gold at this point.  Also, this week on September 22nd, Colby and I celebrated our 4th wedding anniversary.  Another one of our dear friends, Deanne, volunteered to watch Judah so we could go out to dinner and it was such a blessing to look back over the last four years and see the Faithful Hand of the Father in our family’s life.  We both agreed that, while we would have never chosen the road we’ve been down, the closeness to one another and the Lord that it has brought are a treasure that many may never experience!  Just four years in and we’ve already covered a lot of the “better and worse” parts in our vows!  I must say that I feel like I’m truly in a place where I have to trust in the Lord for each day- one at a time!!!- because tomorrow and the next day seem to hold uncertainty and too much to handle…and besides, who by worrying has added a single hour to his life?  We are being refined like silver in the fire of many trials, but we are also being molded more into who He is calling us to be during that process!  So here I am, at the end of my lament and “How long?!” rant, being thankful for our endless blessings and all I can do is resound with the Psalmist when he says over and over again, “Praise the LORD!”

I intended to write this short little entry last MONDAY, but life got the best of me and I thought, “Better late than never!”

I’ve really struggled in a season of life with so many, “Whys?” or better yet, “Why now?”  I was so in shock when we found out I was pregnant with Eden that I had a really hard time letting reality set in.  So many people would give their kinds sentiments, such as, “You are going to have your hands FULL!!!” or “Wow, you didn’t waste any time.” and even evoked a few expletives from some shocked co-workers.  I was just thinking to myself, “Um, duh!  I KNOW it’s going to be SO hard, but I’m here now…what else am I going to do but just keep going?!”

Then after (most) of the initial shock wore off (some of it is still there!), the guilt set in.  I felt guilty that I had not been just as happily surprised as when we found out Judah was on the way.  I let in so much fear about having another child with a genetic syndrome, or a preemie, or becoming deathly ill again that I found myself going between fear and guilt.  Something is wrong with this picture, huh?!  I kept being reminded of  2 Timothy 1:7, “for God gave us a spirit not of fear but of power and love and self-control.”  That meant that, I was reading this right, then not only did I not have to live in guilt or fear, but I had the power to overcome these thoughts through His love and self-control of my heart, mind and thoughts…how freeing!  Of course, so much easier said than done.

But, I find myself here on the “home stretch” of my last trimester and, although I am pretty intimidated, I am getting excited and I’ve learned to try to drown out the opinions of the rest of the world and hold tightly, instead, to the truth I find in Scripture.

So that brings me to the whole point of this post…  Sunday before last, Colby and I were in the balcony at church.  Our church meets in an historic building in downtown San Francisco and when you sit in the balcony, you can really appreciate the beauty of the craftsmanship: stained glass windows, the huge pipe organ, the dome ceiling… you get the picture.  Surprisingly for SF, the sun was shining through the colored glass in the windows and an old familiar song began to play, Doxology:

Praise God, from Whom all blessings flow;
Praise Him, all creatures here below;
Praise Him above, ye Heavenly Host;
Praise Father, Son and Holy Ghost. Amen.

The words are so simple, yet they struck me so hard… Praise God, from whom ALL blessings flow.  That line alone sent my mind on an endless list of things in my life – right now!- that are worthy of His praise.  I looked over at the hand I was holding of a man who, over the last 6 years together and nearly 4 years of marriage, has listened to endless dreams and fears, dried billions of tears from my eyes with loving comfort, given me the best laughs of anyone else in the world and, more than anything, shown me the true meaning of a man of God who stands with integrity even in the storms of life.  I thought about the little boy I’d just dropped off at the nursery, who was happily smiling and sitting (all by himself!) playing with toys and the other kids in his class and couldn’t help shed a few tears as I thought about everything that little boy has overcome in his short life: this time last year, we were just receiving the news that he might not live after he was born and, if he did, it could be with major handicaps and a life-threatening cardiac condition.  And just 7 months ago, I held his nearly lifeless body in my arms- on two separate occasions!- and God, in His mercy, gave the the self-control and power to keep myself together enough to perform CPR to save his life…I know he is only here today because the Lord Almighty is the Keeper of his days here on Earth.  Then my mind went to the little jumpy baby in my belly and all of the fear and guilt were gone as tears continued to run down my face in praise and thanks thinking about how blissfully uneventful this pregnancy has been thus far!  I barely dealt with morning sickness this time around (BIG change from last time!!!) and what a great feeling to walk out of our ultrasound and echo appointments and bypass the check out desk to make a follow up appointment- something so utterly foreign to us.  And thinking of the delight in having a little girl…all the fun pink stuff, dolls, tea parties and the sweet bond that only a mother and daughter are capable of sharing (a big happy birthday to my own momma today!!!).

All of this from one line of one, short little song!  I felt so thankful and proud of Christ’s accomplishments and of my life being laid at the foot of the Cross.  At the Cross, life’s struggles and challenges can somehow mysteriously turn into life’s greatest blessings and that is why as “creatures below” together with “heavenly hosts” alike must give praise and honor to the blessed Trinity: Father, Son, and Holy Ghost.  Amen.

We are on day one of an intense sleep training program and (conveniently) Colby already had a Men’s Prayer Breakfast commitment this morning, so I’m writing to try to drown out my breaking heart over my little man “crying it out” at the first nap time

I’ve been holding out on the blog world, avoiding writing and (as usual) mostly because I want people to think I’m doing so well that I just don’t feel the need to write about all my struggles…not true!  I’ll admit it, I’m a fraud.  Even after 9 precious months with our boy, we still have little battles everyday.  Now, I realize this is true for every parent, but ours just look a little different.  I’m tired.  And while that could have something to do with the fact that I am fast approaching my 27th week of pregnancy, and therefore, my third and final trimester, I’m tired.  It’s hard to work three 12 hour shifts a week only to come home to appointments with our regular pediatrician, specialists and therapists.  We are still struggling with our insurance company to cover what our policy states they should cover for his hospitalization at Children’s…almost 8 months later!  It’s hard to watch other babies reaching milestones effortlessly, only to watch Judah struggle and fight for each of his.  The big one right now is eating solids.  We’ve been working for a couple months and had advice from his pediatrician and special mouth exercises prescribed by his OT and have yet to get down a whole bowl of any type of veggie mush, so yesterday we were referred to an Oral Motor Therapist.

People are so sweet and I hear all the time, “He’s going to be fine and do everything a normal baby would, just in his own time.”  And while I know this to be true more than anyone (I’ve got one stubbornly determined little boy!) and appreciate the concern and comfort, it’s hard to be the mom and dad.  It’s hard to battle guilt and struggle with striking a balance over letting him play independently vs. working with him on exercising his core for balance since his arms don’t help with this, or feeling defeated after only two tiny bites of food, or letting him “cry it out” at nap time/night time when we’ve had to be so careful about getting the max amount of calories in him for so long.  (Which P.S. he’s just fallen asleep after only 22 minutes of crying…go Judah!)  I KNOW he’s going to get there, but the journey is hard!  On the flip side, each little milestone seems like we’ve just summited Everest.  So many friends posting such cute and sweet photos of there little people sitting with hands in front in the “tripod” position with captions like, “Look who’s sitting up by themselves!” and I know that they must be proud, but there is no way I could express the pride in seeing Judah’s proud little face when he (finally!) sat up independently using only his rock hard abs for balance!  All the OT appointments and “therapeutic” playtimes seem worth it all and even if it is not true or not even fair to make this judgement, I feel like I must be the proudest mother on Earth.

A little stripe of anger came out yesterday that sort of surprised me…still moving through coping stages, I suppose.  CAUTION:  I’m about to delve into a topic that, while I have strong feelings about, I normally would not write about, but I just couldn’t help it.  In the last few weeks, I’ve run across several articles that address the issue of terminating a pregnancy on the basis of a genetic syndrome diagnosis, even if it is known that the syndrome would not be life threatening.  Here’s a quote from one of those articles from the New York Times:

“I couldn’t have imagined reducing twins for nonmedical reasons,” she said, “but I had an amnio and would have had an abortion if I found out that one of the babies had an anomaly, even if it wasn’t life-threatening. I didn’t want to raise a handicapped child. Some people would call that selfish, but I wouldn’t. Parents who abort for an anomaly just don’t want that life for themselves, and it’s their prerogative to fashion their lives how they want.”

WHAT?!  I feel like I’m in a strange “no man’s land” on such a delicate issue because I feel like my frustrations are coming from two directions.  The first is pretty obvious…it hurts to hear someone say that about a handicapped child, as if they are too good and too intelligent to raise a child just as they were created because it would somehow be “inconvenient” and those that do make that choice are just too ignorant or “under evolved”.  The second, not so obvious.  I feel like as one coming from a Christian worldview, it is so easy to demonize a person with this viewpoint and aimlessly rant into the blogosphere about how terrible our society is and God’s judgment (which I believe strongly in!) and so on, but I feel like these rants to people they will never meet or see and also will not be seen by those they may offend must be the easy way out!  Being in the field that I’m in (and the geographic location) I come face to face with ethical issues like this on a somewhat regular basis with patients.  Although I will never understand this type of logic, I can reason that people who make choices like this see the world through a different viewpoint than my Christian worldview, and I am a medical professional.  So with much prayer and continual asking for humility, I can honestly say I really don’t judge patients who have made such choices, although I cannot understand them.  Several weeks ago I was sitting in the break room in Labor and Delivery after a “team meeting” chatting with one of the nurses who I know professionally, but not very personally.  Somehow we got on the topic of babies with “anomalies” and she was saying that with her fourth child, she told her mother, “If there is anything wrong with this baby, we are just going to tell people that I had a miscarriage because I just can’t deal with the idea of raising a special needs child.”  Ouch, this was a little more personal.  I squelched the fleshly temptation to lash out in anger and hurt and simply told her of Judah’s story and that our first impression was that he may not even live or have a severe mental and physical handicap, and although it was not easy, that he is the biggest blessing anyone could ever ask or hope for.  Rather than talk (because talk alone is cheap, of course) I am trying and struggling to live the lovingkindness and endless long-suffering of our Savior King out on my sleeve daily…and boy is it hard!  It’s hard to swallow anger after hearing comments like those.  It’s hard to hold my head up high and not feel I owe the world an explanation when I can see them staring at Judah.  It’s hard to keep saying, “No, not yet.” to a long list of developmental milestone questions at the doctor’s office.  It’s hard to live in a world broken by sin awaiting the return of Christ when those who know him will be given a fully restored body, but I am determined to let my life, my family’s life and the life of my son to testify “against the grain” and new expectations of the culture we live in so that the Name of Jesus may be glorified.

I challenge others who share a Christian worldview with me to also be unsettled by mere talk and do something!  Offer to babysit for a family with a special needs child (even if their “baby” is an adult!).  Don’t give in to the temptation to avoid families with special kids, therefore isolating them, be bold and (kindly!) ask them about their child…trust me, they are proud of them and would love to brag!  Does your church have a special needs ministry?  If no…then why not?  I feel the need to challenge folks to put the energy that is currently being used as anger towards people who chose not to keep their kids and use it to love and support those who did! We love our kids just as they are, but we need the Body of Christ to do the same because it can be tiring and sometimes, we just need a break.

(FYI: Colby and I feel so blessed to go to a church where Judah has been loved and accepted just as he is since day one.  FBCSF family, it has meant the world to us that there is always a place we can go knowing he is loved and accepted, without explanation or exception.  I look forward to the future growth of our special needs ministry

Whoa, was that ever a mouthful!  (I feel a bit hypocritical talking about ranting blogs in the middle of a rant in my own blog!)  I feel better, though.  It’s something I’ve wanted to write about for quite some time but just didn’t know how to start.  If you are interested in getting involved in a Special Needs Ministry, shoot me an e-mail!  For those in the Bay Area, First Baptist SF has a respite care program that always needs volunteers and for those in Georgia, my sister, Jacque Daniel is the president of a non-profit organization for children and adults with Special Needs and has a lot of networking for a place where you could get involved or start your own ministry!

I hope this entry will be received well as an encouragement, not as a chastisement.  I have nothing but love in my heart for my readers (whoever and however many -or few of you!- there are) but I am willingly admitting that I’m just not 100% ok all the time.  In addition to the highest heights of joy, love, praise and thankfulness, I also walk through valleys of sadness, anger, frustration and loneliness.  Thanks for lending me your ear- I feel better already