Colby and Ellen

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

I am a bit ashamed that I have not made it back to the keyboard since JANUARY!  (Not that I’ve been busy or anything).  It feels a bit silly to imagine that people out there in the black hole (that I like to think “blog world” is) have been sad and waiting for me to write…really I’m just doing it for myself.  I have had so many thoughts on my heart over the last months and I’ve wanted so badly to sit down and write them out, but I just couldn’t do it until today!

I’m sitting here at the desk with the most terribly messy bedroom you’ve ever seen behind me (my mother would be ashamed of my unmade bed and all the clothes strewn everywhere!) and a kitchen with a sink full of dirty dishes, but I am taking this (nap)time to break my months of silence in an attempt to bring you up to speed with our life, but also just to let go of some things.  It’s a bit difficult to even know where to begin…

As I reflect on our lives over the last year the only word that I can really use to describe it is overwhelmed!  We were so overwhelmed by the lovingkindness poured out to us during the initial shock of Judah’s diagnosis and subsequent hospitalizations and I will never be able to express our gratitude for that precious time.  I think in my mind we just had to get home from the hospital and start our (new) “normal” life.  Not really sure why I thought that after being born 7 weeks early with physical disabilities that coming home from the hospital would somehow make him a “normal” newborn (as we like to refer to them in the medical world…I do personally believe that normal is such a subjective word…especially when referring to children!).  I know you are all shocked, but that never happened.  It’s been exhausting and sad at times coming to the realization that our sweet little Judah Boy is in an uphill struggle to make it to the “normal” milestones.

And sometimes I am so ashamed of myself for feeling so down in the dumps occasionally when I look at his sweet face!  Never once has he shown (an abnormal amount) of frustration that he can’t reach a toy or sit up on his own or prop himself up with his arms when he’s on his tummy.  Instead, he is one of the most determined little guys you’ve ever seen and comes up with his own way to get things done…it really is amazing and I feel blessed that I don’t take his accomplishments- however small they may seem- for granted like some with “normal” kids may do without even realizing it.  I imagine him at preschool or kindergarden (or high school and college for that matter!) graduation and I already know that I’m going to be the proudest mother in the crowd.  I am taking one day at a time and some days are great, some days are hard.

Big surprise…I have been overwhelmed at God’s provision for support through this season.  Our closest friends here at seminary, Joe and Megan Fraser, were blessed with a sweet little boy, Liam James, on April 21st who was also born with a syndrome.  And although it is very different than Judah’s, I cannot express the joy and relief that Megan and I have brought to one another as we exchange triumphs and sorrows over the last few months.  How great is God in mercy and kindness to place us on one another’s path and make us great friends before either of us knew the journey our families were about to embark on?!  I cannot understand His ways: in his Sovereignty, grace and love He knew that we would need friends like these to hold us up and walk with an rare understanding of “been there, done that”.  If you read my blog and are not from “around here” you should look up Megan’s blog ( www.myquestforjoy.blogspot.com ) to read about their journey with sweet Liam- they are such a blessing to our family and could really use your prayers and support as they begin collegiate ministry at SF State in the midst of trial in their own family.

There are so many wonderful things that mom’s get to do on maternity leave: spend quality time with their new baby, go on walks, get a great schedule going, readjust to motherhood…and the list goes on!  Well, let’s just say I chose the “path less travelled” and the very week that I returned to work found myself in our bathroom at home face to face with a positive home pregnancy test!  Yet again, overwhelmed!  (also, notice how many months it has taken to write about this experience with a hint of humor!)  Let’s just put it out there, no it was not planned, but I am thankful that we are not in 100% control of our lives because there is so much to celebrate about a new life coming to our little family.  After several (and by several, I mean a WHOLE lot of) weeks, we moved past the total and utter shock and this week we found out it’s a girl!!!!

Eden
This is the name that we’ve chosen for our sweet little girl.  I love thinking about the Biblical Eden: a place where no pain, striving, shame, want, brokeness, fear or sadness existed.  But most poignantly, there was the unceasing, unveiled Presence of God, Himself.  Can you even imagine?!  I long for the day when our Lord returns and we are taken home to a place where all of these things will be restored to those who know and serve Him.  My prayer for our little girl is that she would grow to be a graceful woman whose spirit embodies the hope we have in Christ Jesus, and that her life would reflect the precious redemption we have in Him.  I am getting more and more excited thinking about the new addition to our family and although when I look at: our lack of space (think 2 cribs in a tiny bedroom!), wonder how we are going to make it with two when some days I feel like we are barely hanging on with one, and have no idea what the future holds I DO get overwhelmed…I am trying to focus on the overwhelming reality that God is blessing our family more than we know what to do with!

We are finally home!!!! (And I’ve finally got myself together enough to write about it!)  It ended up that we were not able to come home last Tuesday (more tests needed to be done!), but we were able to come home two days later on Thursday!  So, it has been a day shy of one week and I am just now starting to feel like we have sort of got our things in order!

The only word that comes close to describe how we both feel since he’s been home is overwhelmed.  Overwhelmed with love, thankfulness, joy, at times fear/paranoia, doubt, can we really do this?!, “I can’t believe that’s our kid!”, and of course, Love, love and more love!

Although we are so, so, so glad he’s back home, I’m not going to pretend it’s been 100% perfect with no breakdowns and little moments of freaking out.  Even though they did more tests than you could imagine(!), they were still never able to say 100% what caused the “incidents”, therefore, they could not guarantee they would not happen again.  They did find that Judah sometimes has an irregular heart rhythm where his heart beats too fast (Atrial Ectopic Tachycardia, a type of SVT) and also that the “holes” we already knew were there that we are waiting to “close” are also putting extra strain on his lungs with fluid retention, so he came home on a couple new meds (in addition to the reflux meds)to correct these problems.  The ride home was scarier than any roller coaster, haunted  house, scary/suspense movie all rolled into one.  It felt like we were both holding our breath and didn’t really let it go until we were at home (actually in the house!) for a couple hours.  He is doing great though…we are getting into a little routine and Mom and Dad are trying to get the hang of organizing the normal stuff like feeding, changing, baths, etc. and the “special” Judah stuff like meds, splint wearing, the entourage he needs for his stuff when going out in public and a bazillion doctor’s appointments.  It is really overwhelming to juggle all the specialists appointments, all the phone calls and paperwork: yes, I did have a small breakdown about this.  It is tiring, overwhelming and if I look too far into the future to realize it is not going to change any time soon I can hardly stand it, so I am trying to learn how to take it one day at a time and train myself to not compare myself to other moms with “normal” newborns.  I never want Judah to think that I wish he was any other way than just the way he was created.

With all of these overwhelming feelings, we are increasingly thankful for our “family” out here!  Ever heard the phrase, “It takes a village…”?!!!  This was definitely put into action this week as Judah went to church for the first time.  When he was discharged from the hospital, his doctors told us that we should not drive alone with him in the car (as if we would!) so this made for an interesting Sunday morning.  There was a Children’s ministry training this week, so Colby really needed to be up at the church extra early to get prepared and stay late to “run” the meeting, but we did not want Judah to be gone from home all day long, so we recruited some helpers!  Colby rode to church with our friend Deanne (who was going early to set up sound/media stuff), then one of our other friends, Megan, drove our car so that I could sit in the back seat with Judah.  On the way home, Deanne drove so I could sit with Judah and Megan rode home with Colby in Deanne’s car after the meeting was over!  All this just for little Judah Boy…let me reiterate how thankful we are!!!!

I know I must have been a sight to see on Sunday!  I had Judah strapped in front, his backpack diaper bag strapped on back and carrying his pulse oximeter with the long cord coiled up so as not to trip myself or anyone else!  I woke up a bit later than I anticipated so I didn’t have time for make up or breakfast, so we were out the door, stopped at McDonald’s for oatmeal (the only drive thru in Mill Valley!) and looking less than glamorous, but none the less…we were out the door!  I made it up the stairs to the balcony of the sanctuary (admittedly to avoid the hoards of germy well wishers!) and I was overwhelmed with joy as the sun shone through the 100+ year old stained glass windows, and happily worshipped along with the other Believers at FBCSF and I still cannot get over how you can be in the middle of life’s chaos and storms and find such peace, joy and rest in the Lord and in the fellowship of His followers.

No matter how overwhelmed I get sometimes, I am frequently reminded to look back at Matthew 6:25-27:

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?”

We are trying to be brave and put him in his “big boy bed” (aka the crib in his room) starting off with day time naps…it might take a little longer for the overnight stays!  Here he is yawning after waking up from a lovely morning nap!

Hello all!  This is going to be really quick because we are just finishing up getting ready to head to the hospital for (hopefully!!) the last time.  We are still not 100% sure if he will be discharged today, but as long as the results from another Holter monitor test come back ok, we think that today is the day.

I’m writing to ask you all to pray for this day and the coming days of our little boy at home.  We are asking the Lord to go ahead of us and prepare the way, go behind us in protection and walk beside us to give us peace, strength and confidence to take care of Judah without fear.  I think I am most afraid of the drive home and I have really been battling “re-living” the first trip home from CHO and I can sort of feel myself mentally preparing for another resuscitation “just in case”.  I know that this fear is natural, but I am in desperate need of Supernatural peace…this is what we are praying for.  We really need to close this chapter of life and move forward and the strength to love and live with our son without the constant worry and fear of losing him or something horrible happening.

All of this said, we are so thankful that we serve a God who is already victorious!  The Enemy has tried so hard to defeat and damage this little family, but we are claiming 1 John 4:4 today!  ”You, dear children, have overcome them because the one who is in you is greater than the one who is in the world.”  We will post pictures of our little man at HOME as soon as we can!

We love you all and appreciate your prayers, as always, but especially today!

We are quickly approaching the two week mark of Judah’s second hospitalization…which means we are also approaching having a two month old son!  Both are so hard to believe…  We are hanging in there, and I feel like this time around is easier than when he was born and was just a “growing preemie”.  We have seen what this little boy is capable of (twice!) and we want to get to the bottom of it before he comes home again, but I’m not gonna lie…it’s hard!

Our days are comprised of waking up and getting ready as quickly as possible to drive to the hospital in time to feed Judah and hear morning rounds with the Doctors to see what “the plan” for the day is, then eating lunch in the hospital cafeteria (and loading up with caffeine!!!!), then staying as long as we can stand it, drive home and try to keep our household together (sort of, at least) go to bed and repeat the next day.  And all you people with kids out there thought it was exhausting having your newborn at home!  (We have now done both and I think the hospital thing is much more tiring.)

It’s hard to believe it is only Wednesday…it has been a busy, test filled week so far!  Monday morning Judah had a video swallow study where they “looked” (using radiological equipment) at the anatomy in Judah’s throat to make sure he was not aspirating (getting milk in his lungs) while eating.  This test was negative so that was a victory.  Next, the GI (GastroIntestinal) docs came to put a pH probe down his nose and it rested in the back of his throat to measure how much acid was coming up and how frequently he was having episodes of reflux…this stayed in for 18 hours.  He was getting so tired of all the testing and was working a lot harder to breathe, it is so hard to watch your baby struggle.

That night, I stayed with him in the sleep lab for a sleep study.  He was such a brave boy while the tech in the lab put over 30 leads all over his head (26 of them were on his head!), chest and legs.  She wrapped his head with a bajillion bandages so that the leads would stay in place.  Then there were two foam bands, one around his chest and one around his belly, to measure when he took a breath.  Lastly, he was wearing two pulse oximeters on his feet and a cannula in his nose that measured the force of his exhalations and carbon dioxide.  When she put in the cannula, he just lost it…he couldn’t take any more!  I couldn’t really pick him up to comfort him because of all the crap all over his head and body, so I tried to “hold” him by practically laying in the crib with him trying to rock and pat him the best I could.  I knew he was hungry, but he was so upset that he didn’t even want to eat.  I finally got him to calm down enough to eat a little and I thought he was finally going to go to sleep, but he got so upset again.  I just sat there with my head resting on his little metal hospital crib and cried too…I needed Colby so bad to help me, but only one of us was allowed to stay!  We finally ended up giving him Tylenol because he was so uncomfortable – it’s sorta hard to get results from a sleep study if you never go to sleep!  It felt like some sort of weird torture being in a room to be the one to comfort your baby, yet not even able to pick him up.  But we got through the night.  Colby got to the hospital really early and we got Judah fed and tucked into bed and went back home.  Both Judah and I slept pretty much all day (he in the hospital and me at home) and we returned to the hospital that evening.

I’ve had some sad moments in the past few days.  Last night I leaned over to kiss Judah’s nose and when I leaned back up, I had something like a “flashback” and the emotions of seeing his blue face as I leaned up from giving him breaths while preforming CPR on him came back.  It was frustrating, all I could think was, “How messed up is it for a mom to have a flashback like that when she kisses her baby?!”  And it is all of the little things: an empty sleep sack in his bed, his little hooded towel hanging on the back of the bathroom door, and the little playmat with no little boy doing his “tummy time” or the empty carseat (well, empty other than a bag/mask that the manager of the NICU at Marin General gave me “just in case”!).  It is weird to feel like the only people “out in the world” that know I’m a mom are the people at the hospital: I feel sad when I see someone at Target or the grocery store with a tiny baby in a stroller and it’s hard.  But at the same time, he is “making friends” at the NICU at CHO and there are a few nurses that want to take care of him each time they are there… that makes me feel proud of him and so happy that he is loved even when I can’t be there all the time.

I have been so encouraged by all of the Facebook posts, e-mails, blog comments, texts, and cards…it is the reminder that there are literally hundreds of people praying for us that have given us a little boost just at the right time.  Every meal, visit, and package from Georgia have meant the world to us…it is an overwhelming feeling to be such a small part of the Body of Christ.  Romans 12:4-5 comes to mind, “For just as each of us has one body with many members, and these members do not all have the same function, so in Christ we, though many, form one body, and each member belongs to all the others.”

Last night, Colby was praying as we were in bed about to go to sleep and was talking about how God, the Father, understands better than anyone else the pain of being separated from His Son.  I am so thankful to be married to a man that shifts my perspective from sorrow and pain to peace through prayer.  I looked at him last night and asked if he could have ever imagined that on September 22, 2007 when we said, “For better or worse…”  it would be anything like this.  We just smiled and said, “No way!” but it is an incredible thing to feel the pain of the Refiner’s fire, knowing that you are making it only through dependence on His strength.  We are daily defeating the Enemy’s plan to destroy this family…Colby and I are closer than we have ever been and I have to brag a little on what an incredible man he is.  He has been my rock: letting me cry when I need to, but knowing when and how to re-shift my focus to the Lord and his plan for our family.  Continue to pray that our marriage and family would continue to be protected and strengthened each day.

The Lord is so merciful and knows when we need a break from the super hard stuff.  Today, that came in the form of a really alert little boy!  We had such a good visit with Judah – I’ll post some of the pictures.  He is starting to really look at us and enjoy looking at toys and the mobile on his bed and it’s the cutest thing you’ve ever seen!  We are beginning to get some preliminary results from a lot of the tests, but nothing definitive enough for them to mention when he may come home, so we are trying to be patient!

We love you all and appreciate your prayers, care and concern for our family.  This past week, we got a 2010 review from our blog host that stated we had over 10,000 viewers on our blog for the year!  May God be glorified through our lives and the life of our little boy.