a year in review

First, thank you for your prayers for us yesterday. We had safe travels and overall Ethan is doing extremely well! His potassium was high, and so we have to start him on a new medication to counteract that... which is tricky. It's a high volume of medicine, three times a day, and it has a very strong taste - grape salt water. Needless to say, Ethan is NOT a fan, and attempting to get this down his throat every day, 3 times a day, for the next few months is going to require God's grace - and advil for me. We go to the hospital on Friday to ensure his potassium level hasn't gotten any higher (pray it hasn't), because if it has, he will need an EKG to ensure that his heart is okay (high levels of potassium can affect your heart). But overall, like I said, he's doing fantastically well.

Which brings me to my post today...

Adam and I were talking the other night about the fact that for the first time in either of our lives, we can recall every inch of this year - 2008. That might sound strange, but if I look back on my life, I can remember certain "moments"... special days, or how a particular holiday was spent, a family vacation, an anniversary date, etc... but I can't honestly say that I can recall an entire year. For instance, the year I got my drivers license was 1995. I vaguely remember going to the DMV and I remember driving around town with an excited younger sister, but that's about it. 1995 - I don't remember much about it. Oh wait, that might have been the year my highschool cheerleading squad qualified and went to compete in the National Cheerleading Competition at Disney World in Florida. I mean, come on, for a small Christian school in Texas, that was a HUGE deal, and here I can't even remember exactly what year it took place! Well, what about my senior year of college? Sitting here now, I can't even remember what classes I took the semester I graduated! What about birthdays? There are some birthdays - even in recent years - that I can't remember how I celebrated them. Forgetful? Absent-minded? I don't think so... I think maybe it's more that in years past my focus wasn't nearly as concentrated as it has been this year.

But this year.... 2008.... I remember every day and month of it.

Looking back it seems like it went by so fast in a lot of ways, yet at the same time, I can easily re-live each day in slow motion.

We rang in the new year, this time last year (though I don't remember exactly what we did!), with me extremely ready to deliver the child who had decided to take up permanent residence on my sciatic nerve. Twenty-three days later, he was born. The adjustment period in the days that followed were so surreal and strange. All of a sudden there was this little baby boy, who only slept for 2 hours at a time (I do remember that) and I, Kasey Jean, was his mother.

Fast forward six weeks later to March - that's when I went back to work. Teaching my little kindergartners. Dropping Ethan off at my parents, stopping in to check on him during my lunch break... the whole routine. I remember all of it.

Then fast forward a mere 5 weeks to April 8th. I remember that day. The day. I remember dropping Ethan off at my parent's place just like I had done every day for the previous 5 weeks. And I remember thinking that he wasn't acting right but choosing not to worry. I remember checking in on him during lunch, just like I always had. He was still asleep from the time I dropped him off at 7:00 am and he hadn't eaten yet. I remember going back to work and not being able to concentrate. At 2:00 pm I was administering an Achievement Test for the 8th grade class and I felt an overwhelming urge to leave. A few minutes later, I did. I remember speeding to my parents, grabbing Ethan & taking him to the pediatrician. Crying the entire way, but not knowing why. I remember telling myself he had caught a cold. I remember calling Adam. I remember the pediatrician telling me to go down to the Children's Hospital for some routine blood work to see if he had caught a virus or something. I remember me waiting for Adam to leave work and go with me. I can't bring myself to write what all took place over the next 7 hours, but I remember.

All of it.

Especially the utter shock of hearing, "Leukemia cells are showing up in his blood work. The pediatric oncologist is coming in to see you, he should be here by 2:00 am. Right now, though, we'll need to go ahead and admit your son so we can begin the further diagnosing and treatment."

The weeks that followed.... there in the hospital room. I remember the obnoxious machines that would beep all night long. I still remember the code to the kitchen that patient/family had access to there on the floor. All of the unfavorable statistics, all the chemo, all the information, all the people, all the cards, all of the encouragement.... I can recall it all.

Fast forward again to August. After months of searching, a cord blood donor had been found. The temporary move to Boston (7 weeks to be exact), the radiation treatments, more chemo, more information, more encouragement and more cards/gifts.

Every thing. I remember.

Wow. These tears feel so fresh. Simply remembering - actually unable to forget - still feels like opening a wound. I can still feel now, exactly how I felt going through each step. The tears are still hot as they stream down my face. The tears are still vulnerable. The tears are still in awe.

Yes, I remember this year so well that my tears cannot be contained. But what I haven't yet mentioned is how well I remember the beauty.

• A thriving little boy who overcame each obstacle put before him... one answered prayer after another.
• The love and support of family.
• The love and support of friends.
• The love and support of strangers.
• The days we were able to be at home in between initial chemo treatments.
• Having the life changing opportunity to put faith into action.
• Believing for a miracle in a way that actually changed my life.
• Seeing the miracle look up at me every single morning - and all day long.
• Seeing God work in ways that even my own guilt and fear couldn't stop.
• Paying severe attention.... Seeing God. Feeling God. Knowing God.... a craving.... more than I ever had before.

Even in spite of our son being diagnosed with a rare form of leukemia (cancer!?) at only 11 weeks of life, I can't say that 2008 was an awful year, because how can you say that about a miracle. But I can certainly say it was unforgettable. In many, many ways.

I don't know what 2009 has in store. I will honestly say that I hope there's a bit more time and opportunity to enjoy life (aka: have fun!) as a family. But, if we are to learn from history, then I walk into 2009 tomorrow with the knowledge that my Lord is exactly Who He says He is... my son is in His powerful hands... so is Adam.... and so am I.

And if you know Him, then so are you.

Luke 1:45 "Blessed is she who believed, for there will be a fulfillment of those things which were told her from the Lord.”

2 Corinthians 9:15 "Thanks be to God for His indescribable gift!"

Thank You, Lord. You know the words in my heart... Thank You.

Happy New Year. And thank you... We cherish what you give and do for our family with your prayers and kindness. 2008 wouldn't have been the same without you.

road trip

Ethan and I are heading to Boston this morning for his check-up. Join us in prayer (again) that his electrolytes (aka: sodium & potassium) remain in stable condition - or even better condition! And that the rest of his blood counts continue to look good! His rash hasn't been nearly as inflamed over the past week or so, and that's been a nice blessing. Thank you for your prayers for us today - especially for Ethan. We can't thank you enough!

p.s. - I feel a long post brewing.... I think that with 2008 quickly coming to an end there's a lot on my mind.... it will have to wait until tomorrow, though! I'm off to Massachusetts today.

Merry Christmas, Ethan!

We had such a wonderful Christmas Day!

The Lord blessed us with so very much.

And Ethan got to enjoy both sets of grandparents

and all of his new toys!

All in all, I think little E made

out pretty good for his first Christmas...

and this doesn't include all the

fun clothes & books & DVD's he got!

Although, it is true - he was more thrilled

about pulling at the wrapping paper

(and putting it in his mouth)

than anything else!

Hope your day was just as special as it was for our family!

joy to the world!

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Joy to the world, the Lord is come!

Let earth receive her King;

Let every heart prepare Him room,

And heaven and nature sing,

And heaven and nature sing,

And heaven, and heaven, and nature sing.

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And she brought forth her firstborn Son,

and wrapped Him in swaddling cloths,

and laid Him in a manger,

because there was no room for them in the inn.

Now there were in the same country

shepherds living out in the fields,

keeping watch over their flock by night.

And behold, an angel of the Lord stood before them,

and the glory of the Lord shone around them,

and they were greatly afraid.

Then the angel said to them,

“Do not be afraid, for behold,

I bring you good tidings of great joy

which will be to all people.

For there is born to you this day

in the city of David a Savior,

who is Christ the Lord.

And this will be the sign to you:

You will find a Babe wrapped in swaddling cloths,

lying in a manger.” And suddenly there was with the angel

a multitude of the heavenly host praising God and saying:

“ Glory to God in the highest,

And on earth peace, goodwill toward men!"

Luke 2:7-14

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For God so loved the world, that he gave his only

begotten Son, that whosoever believeth

in him should not perish, but have everlasting life.

John 3:16

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Merry Christmas!!

11 months

Someone is 11 months old today... I'll give you one guess who! And thank you for your prayers for his appointment yesterday. Ethan's counts came back showing everything to be where it should be. His electrolytes (aka: sodium & potassium) still hovering around the borderline, but that's okay. They are still in the "safe zone" and that's all that matters. We're taking another new approach with his skin rash, so hopefully this new cream doesn't further irritate his skin. AND we're taking a different approach to get him to eat more solid foods. Right now, he's still fully on formula - however, not from a lack of trying from mommy! We practice "big boy" food every day, several times a day... he's just not interested (which is to say he screams and throws a fit until you give him a bottle). HOWEVER, we're trying to encourage more "self feeding" items which he seems to take to a little bit better, so I was encouraged yesterday with these new tactics. The doctors want him to be steadily growing/gaining weight and at this age formula alone won't cut it. But again, like I said... we try! Hopefully this approach of "independent" feeding will open his willingness (and his mouth!) towards a more variety of things to eat.

There's always more I could say, but I'll save it for Christmas! However, before I go, I'd like to once again thank anyone and everyone who has ever donated blood, platelets or organs. Lives are changed, lives are sustained, and lives are given another chance at living because of people who donate. Some of you may remember when Ethan was extremely dependent on blood transfusions and platelets just to survive another day. It's a daily miracle that's needed every single day by someone in this world. Our little man being one of those people. So thank you. And let me encourage everyone to give of yourself in this way. Donate blood. Every chance you get. Donate platelets. Give your personal stamp to someone else. I assure you that you'd not only be changing the one who receives it, but the lives of their loved ones.... because there's no words to describe how grateful we were that any time Ethan needed a transfusion of blood or platelets, there was always a supply in his blood type. How grateful we were.

How grateful we are.

prayer requests

Tomorrow (Monday), Ethan and I will embark on our weekly trip to the hospital (this week it's our local hospital, not Boston) to see how well his counts/levels are doing. I have no reason to believe that his counts won't be excellent, however, it'd be foolish of me not to ask the Lord's blessing regardless. As you may remember, Ethan's potassium and sodium levels have been teetering on the brink of requiring a step of action (meaning a re-admission for a few days to get the levels back to normal and further investigate the root cause of the problem). In case you're curious, high levels of potassium can cause kidney failure and low levels of sodium can cause seizures, can affect nerve & muscle function, and can have affect blood pressure.

Ethan's numbers for each of these electrolytes are in need of a significant boost (in opposite directions!) in order to completely alleviate the very thought of there being an concern. SO with that said, I'd like you to pray once again that today his potassium level would be LOWER than it was last week and that his sodium level would be HIGHER than it was last week. And maybe a prayer that there'd be no other surprises pop up that would put us in the hospital, keeping us away from home over Christmas - or any other time for that matter :-)

Thank you for the blessing of your prayers for Ethan. If he knew how to say "thank you", I know he would! But, his mommy and daddy sure know how and we THANK YOU very, very much!

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p.s. - A friend recently brought to my attention, another beautiful child in need of our prayers. Her family's website shows so much strength and dependence on the Lord... but I'm sure there are moments of weakness and fear mixed in as well. The young lady's name is Catie & she is struggling with a very rare brain tumor. I've added her website to my side bar on the lower right with the other children we've been praying for, but will add it here for you as well. http://catiesstory.com/

picture time

I thought I'd post some new pics of our soon-to-be 11 month old (the day before Christmas Eve!) I can't believe we're nearly one month away from his 1st birthday!!

Whew... time flies!

In these pictures, you'll see that we were testing out his "big boy" car seat ... ya know, the "front-facing" seat. We think he likes it, but you be the judge (wink-wink).

Oh, and let this be your initial warning. With Ethan's first Christmas coming up next week, and his 1st birthday coming up in January... well, you can imagine all the pictures that will be posted, right!?

For we are His workmanship,

created in Christ Jesus for good works,

which God prepared beforehand

that we should walk in them. - Ephesians 2:10

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time for an update on my boys again

Thank you so much for your prayers over us. They are certainly being put to good use and I can't thank you enough for your kindness!

My hubby (Adam) is adjusting to life with one fully functioning arm. He's quite a trooper, himself... I see where Ethan gets it from. He has started physical therapy, and though it's painful, he knows that successful therapy will significantly decrease the chance he would need a second surgery. The primary damage is to his index finger, but obviously it has affected the use of his whole hand. He has to wear a fairly large splint, that covers his hand and his wrist, as added protection... but like I said, he's learning to adjust. Thank you for praying for his healing!

As for Ethan, his appointment in Boston yesterday was fairly uneventful - which is GREAT! That means that all of his blood counts and levels were good and we got to go home for another week! His electrolytes (potassium and sodium) are still hovering on the borderline, but they haven't crossed over into needing any action/intervention, so that's a blessing to my heart right now. His rash is still with us, however, my main concern was how it was irritating his eyes and I must tell you that almost instantly his eyes cleared up the day I asked you all to pray. Thank you, Lord!

I've actually decided to take a different outlook on this rash situation. It's annoying to me, but it doesn't appear to really bother our little man too much (now that his eyes are under control), and according to the doctor, this type of rash is extremely normal after an umbilical cord blood transplant. It can be mild to severe, but it's just his body accepting and getting used to the new cells. And when I think of it that way, I'm reminded of the on-going miracle at work inside Ethan's little body. So in an odd way, the rash is a visual aide to help me remember what is going on "behind the scenes"... and really, how precious it all is. I would still like the rash to go away, obviously, but while it's taking up residence on his sweet skin, anytime I feel annoyed at it or how often I have to put topical cream all over him, I'll instead think about what the rash means.... he has new blood flowing through his once cancer-filled body.... he's alive and strong.... his body is working.... God is working.

When I look at it that way, I've never seen more beautiful red patches in all my life.

I have a confession to make...

No, there's no need to contact the authorities... it's not that kind of confession. But, one that needs to be stated, regardless. I've touched on bits and pieces of this before, but I've not gotten it all off my chest and really - for my own sake - I need to.

Before I get going, I put forth a disclaimer at this time: this post could be all over the place, so fasten your seat belt!

I've mentioned recently that I can be quite reflective. But, whatever it is I'm trying to focus on at that particular time can sometimes come and go as quickly as it takes for a red light to change to green, for a dry diaper to get wet again, or my seemingly content child to get disgruntle (which is sometimes only a matter of seconds)! My train of thought gets interrupted quite frequently in the course of a day. I'm sure most all people could say the same. Except when I'm here. Here, my attention is captured and I'm able to bring all the scattered pieces together, in one place, for me to think about, think about, and think about again. Here, I type and sit. Then type some more. Followed by more sitting, reflecting oh yeah, and thinking. All-the-while trying to "figure it out" as I go. Like a true quiet time for me.

This blog started (and still continues to be) as a giant prayer request for our then 11 week old son who, we were surprisingly told, had a rare infant leukemia. I clung (is that a word?) to my laptop those early days in the hospital last April, pouring out details that we'd learn each day, begging for any eyes reading the words to pray for Ethan's healing. And somewhere in the midst of the requests for prayer, I noticed the Lord morph Ethan's site into much more. It's still a place in which I come to you sweet hearts, asking for prayer over our family, but it's also now a place in which I come to wait and hear from the Lord. My words are only as strong as the truth He has given me. And I sit here tonight, truly amazed at how much He has spoken to my heart through this very site.

But that's not the confession.

The confession is that I've been ignoring a prominent problem in my life. Surrender. Not the type of surrender that would require me giving myself over to the enemy - such as it is in war or something - but surrender (or in my case, the lack thereof) of the "me" factor.

I've noticed it pop up occasionally in the course of my lifetime, however, the true confession is how terrible it has become as of late. ME. It's all about me. Obviously, this is not a pretty picture to paint of myself, but truth be told, it is the skeleton in my closet.

Shall I go on? Unfortunately, yes. Because if I don't do it now, I won't face the fact and deal with the problem... Ethan will need my attention, my favorite TV show will come on, or the phone will ring - anything will and has kept me from owning up to what I know God is asking me to confront. MYSELF.

Honestly, I don't even know how to describe what I'm talking about. So even now, I'm asking the Lord to help me process it all. Basically, I have been getting in the way of being able to have what I claim I know is available to me through God's grace. Peace. Strength. Faith (as opposed to Fear). Joy. Expectation. Anticipation. Hope. A beautiful Future with my Family.

Instead, lately my actions and reactions show that of one selfish, fearful, and "I give up" type of person. Maybe it's hard for another to notice it. Maybe it isn't. Maybe I'm really good at knowing when to smile and maybe I'm not. But whatever the facade, in the deep down darkness of it all, you would see a young woman desperately trying to hold on to whatever little bit of control she thinks she has left over her life and the lives of her son and husband... and you'd find her backed into a corner, with a Louisville Slugger in hand, waiting in a determined panic for Fear to come ask her to join him. And instead of swing the bat at him, she just stands there, buying into every last thing he says. It's not just Fear, though. She entertains Self-Pity, too. In fact, if you were looking closely, you'd see that Fear and Self-Pity looked very much alike. And together, they present a very convincing message:

Cancer has been known to relapse, ya know. We suggest you not get too comfortable. There's always a new trial lurking around the corner. Case in point, you've seen the rock of your family suffer an accident - next time it could be worse - for either of you. So, we wouldn't get our hopes up about enjoying life like you thought you would.

Imagine a much larger version of this diatribe and you can begin to understand how easy it has been to entertain such horrible mind games. There I've been content to be. And on top of that, living with such a selfish, selfish attitude. Being afraid and being so focused on how all of the events that have happened in our life over the past year have affected me - well, suffice it to say, it's not the best combination.

Which brings me back to the word - Surrender.

Whether I've made a decent point here in this post, or not. The root of my being so focused on myself, and so focused on the fearful "what ifs" is that fact that I've been extremely unwilling to fully surrender my life into the Hands of God. Not my eternal life. But my daily life. I've been so scared to "let go" because I've been so afraid of what else He might ask of me. Which leads me to think about all that I want from/out of my life that I've become extremely self-focused. If you get trapped in that train of thought, I assure you, it's a vicious cycle that is very hard to stop.

So... there you have it. Or better, there I have it. A call to surrender the "details". I could tell a fib and pretend that by the end of this post, I've successfully done it. "Thy Will be Done, Lord!" But, if the truth were to make its way from my typing fingers, it would reveal that though I've admitted the problem, I'm still in the stages of the struggle in correcting the problem.

Definition of Surrender: "To relinquish control... To submit or yield... To give over oneself into the power of another."

Oh the details.... the wish lists.... the nervous prayers.... they are all there. He sees and hears every last one. I know He's trustworthy. I know He is. The question is, am I'm willling to let go of what I think is best for my life, my future, my "right now" and fully & finally give Him my willingness.... myself?

quick update

Ethan's appointment went well on Tuesday. He had to get a shot - which he didn't like - but it's a preventative step against pneumonia and such, so it was good for him. His sodium is borderline too low, and his potassium is border line too high... meaning they are still in the "safe zone" (thankfully!), but are close to a slight dip in the wrong direction. Pray that they each get back to their respective & "appropriate" levels.

And one quick thing, can you pray fervently with me today about this rash on Ethan's face? It's starting to become very red and inflamed around his eyes (upper and lower eye lids) and he's rubbing them all the time - making it worse. Pray with me today that the irritation around his eyes specifically would go away even this very day.

Adam goes back to see the hand doctor tomorrow to have his cast removed and to have an assessment since his surgery last week. He's been quite uncomfortable. Pray God's blessing over his hand and the appointment.

Thank you so much for taking the time to pray for us. I'm so honored that you do.

lady in waiting

I assume it's only natural, given the circumstances we've encountered this year, but in the rare quiet moments I find, I notice that I am quite reflective. My personality is a bit reflective anyway, but lately, even more so. I'm forever looking for the reasons to things. Believing, as I do, that all things enter our lives for a reason, when something strange, difficult, or even earth-shattering happens, I'm looking around - and up - for the reason. What's the purpose of ______ happening to me? What's the lesson to learn here? What is so necessary that such a thing needed to happen to get my attention, mold my life, etc.

However, with this mindset, I tend to over-analyze things as well. Why did I just stub my toe? What was the purpose of me forgetting my wallet at home? As my husband has tried to convince me many times, not every thing that happens in a typical day has a life-changing meaning. True. But, there have been enough life-changing moments in this year alone, that cause me to constantly wonder.... the reason, the purpose, the lesson.

Looking back on my life as a child, a teenager, high school, college, post-college - there's really nothing that I can focus on that has been as lengthy a trial as most of 2008 has been. Sure, I've had embarrassing moments. One of the most embarrassing being when I was a freshman in high school, having just made the Varsity Cheerleading squad. It was Friday. Pep Rally day. We needed two more chairs for the football players to sit in as the principal announced them into the gym to start the "show". I grab the two needed chairs (not the fold up kind - very sturdy chairs), and seeing that our principal was about to welcome everyone to the rally, I run across the gym - from one end to the other - with one mildly heavy chair in each hand. About 1/2 way across the gym floor, I trip. The chair in my right hand goes flying across the gym floor. The chair in my left hand is what tripped me, and I fall directly on to it, its four legs up in the air, and my body perfectly in between them... and sliding across the floor I go. I eventually stop and I just lay there. Nothing hurt except my ego. Did I mention that my skirt was completely raised up and I'm laying face down... so my rear end is posing for all the camera flashes that immediately took place (thank goodness bloomers were a part of the uniform!) Our principal comes over to me (with the microphone) and asks me if I need help getting up.... to which I say "I'd like to stay here". I was so embarrassed that I didn't even want to get up and face the crowd, the football team, or my fellow cheerleaders. Eventually I did, and the whole "the show must go on" took over the rest of the excruciatingly long 40 minute pep rally.... but I was mortified. Come on! That's rough stuff to a 15 year old girl!

And then a few years down the road, of course it's easy to remember relationship drama. The inevitable heartbreak. The kind you don't think you'll ever be able to bounce back from. The kind that makes you remember that STRESSED spelled backwards is DESSERTS!? This scenario has made it's way into my life twice - both in different ways - but neither any less painful to experience, but.... who's counting.... the third time is the charm, right? Right! Adam and I are certainly a match made in Heaven.

And sprinkled throughout the rest of the years, there's the unusual memories of being disappointed by something or someone, being rejected, getting into a fight with a friend over something silly, feeling lost the first day of school, having a problem at work, your car won't start the day of an important exam/interview, and so on.... I can think of a hundred things that have interrupted my "flow" at any given time in my life.

However, this year it's all so different.

The trial hasn't been minor. It hasn't been a result of something I said or did.... or the result of something someone did or said to me. It's not a situation in which I can say "well, this will be old news next week". It's not something I can pretend didn't happen, or ignore until it goes away. I can't reason my way out of it. And I can't do anything to change its existence in my (our) life (lives).

It's a trial of acceptance that I've really never known before - at least not to this degree. Yet, even still, I know that the reason, the purpose and the lesson are more important and needful than I've ever known before. I've not been brought into full understanding yet, and I've also not been brought into a time of full restoration yet.... but I know they are coming. I don't know when the Lord will choose to reveal Himself to me/us in those ways, but I still believe that He will.

I've had a great life. Disappointments, yes. Junk to deal with, yes. Sadness, yes. But the seasons were always quite short. In hindsight, revitalizing change or blessing was always relatively quickly around the corner. But this... this has been a season of waiting. And the waiting has been long. Don't misunderstand, the blessing has been miraculous, but the whole story still continues. How will it unfold? I don't know. But I know we're still being ask to wait. Ethan has been fully protected. I'm in awe of God's power and faithfulness over him. But in the midst of such a miracle, I must say that there has also been pieces of our lives broken in the process. Hear my heart though, I'm overly satisfied (and grateful, and amazed, and blown away, and humbled, and excited, and the list goes on!) with the miracle of my son's chance and ability at daily life. But, deep inside, I know there's more. It's just that we're being asked to wait. Wait on Him. And trust Him along the way. So... I'm waiting. Trusting. For the rest of His rescuing to come. Things have not been easy, but.... I know that He knows. Lately it seems like I do not know much else, but at least I do know that.

He knows.


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winter is here

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We had our first snow here in Connecticut today! Ethan got a kick out of looking at all things "winter white". I thought I'd post a few pics of him in his Boston Red Sox winter hat, that he had to wear on our outing to the hospital last Friday. When I was trying to put it on him, he thought it was a game and kept pulling it off!

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We had a nice quiet weekend. Ethan's personality is coming out more and more... especially when he doesn't get his way. And Adam was unfortunately quite uncomfortable due to his hand still recovering from surgery. He goes for a follow-up visit on Friday, and hopefully the full cast he is in can be removed and replaced with a smaller splint. If you know my husband, you know that it's a bit difficult for him to lay around all day. He's the personality that must be doing something at all times. So this necessary "time out" is proving a bit challenging for him. We appreciate your continued prayers for his overall healing and swift recovery! Oh, and yes, I did get the Christmas decor up... finally.

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My heart is full of things to share, but my eyes are extremely heavy. I do believe it's time for bed. Oh, Ethan's regular "Monday" appointment, got moved to Tuesday. Be in prayer that all is well during that check up AND that they can come up with a new strategy for this persistent rash all over his face & head.

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I greatly appreciate you....

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God be merciful to us and bless us,

and cause His face to shine upon us,

that Your way may be known on earth,

Your salvation among all nations.

Let the peoples praise You, O God;

let all the peoples praise You.

Psalm 67:1-3

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good news

Late last night... very late. As I was trying to fall asleep, I just found myself give in. If it was necessary for Ethan to have to spend the weekend in the hospital, then so be it. We'd make it work. And ultimately, I want him healthy. So I took him in late this morning, not having any idea whether or not we'd be back up there later tonight for his admission. I went on with our day, knowing that regardless, God would work out the details. But of course, secretly hoping that the low sodium number was simply a mistake. I didn't want there to be another issue with Ethan's overall health that would spark further questions and tests over the next couple of weeks. This horrible rash is enough for now. And.... within a couple of hours of his nurse taking Ethan's blood this morning, we got the phone call with the results.

It was in fact a fluke! His sodium showed to be normal today and his potassium even went down another point from yesterday - which is more good news. I was so relieved. So very relieved.

All I've been repeating to myself this afternoon is... when God's people pray...

Thank you for being one of those people. God continues to use you to minister to our family and He continues to provide beautiful answers to our prayers.

Adam is recovering somewhat comfortably.... Ethan is a feisty 10 1/2 month old.... and we all get a (hopefully) quiet weekend at home - together.

Who knows... maybe I'll even get Christmas decorations up.

thank you for praying

Adam's surgery went well. It took quite a bit longer than we were initially expecting, but that's because when the surgeon opened up his hand (from the stitches the ER set for him last week) he noticed that Adam had indeed cut the tendon running through his index finger, in addition to a major nerve. The tendon and nerve were able to be repaired, but the artery couldn't be fixed - but we already knew that. Thankfully there are two arteries in your index finger, and he only cut one. Because if he had cut both, he'd have lost the finger. So when the doctor said that, I really didn't have a comment, other than, "oh..." (long pause) "okay"..... (long pause) "uh that's a decent amount of perspective, huh". (not my finest moment in adult conversation, but what can I say... I was a bit stunned and thankful that stupid pickle jar didn't slice open both of those arteries! Anyway, back to the point. So the surgery went well. He did say that the way the tendon was injured, Adam will need quite a bit of physical therapy to help it heal correctly. Another surgery may be necessary down the road if his mobility doesn't regain itself completely, but we're going to pray against that needing to happen, (right?)! Adam was in quite a deal of pain when they moved him into recovery, so we were there for a couple of hours as they tried to get his pain level down. He's much more comfortable now, however, it's a different story when those pain meds wear off. All in all, he's doing well. He wanted me to tell you all a big THANK YOU for your prayers for him today. He certainly felt them...

As for Ethan.... well, I'm very happy (and thankful!) to report that his potassium level did in fact go down! We need this to continue over the next several weeks, but it's a blessing to me that it went down since Monday. But.... (don't you hate it when there's a but?!?) his sodium level also showed a very low number - which is not good. Low sodium can indicate kidney problems and cause seizures. I have to take him back up to the hospital tomorrow (Friday) to have his blood work re-done to ensure it wasn't an error from the lab. Since the number is much lower than usual, they are hoping it's just a fluke and that the re-test will show it to be fine (pray that it's a fluke!). However, (don't you hate howevers?!?!) if his sodium is in fact that low, he will have to be admitted for IV fluids and to have tests run to see what causing the sodium deficiency.

Needless to say, this probability did not make me happy. Spending the weekend in the hospital with Ethan, while Adam is at home alone still recovering from a pretty intense surgery... *sigh*... well, doesn't it make sense that I just want to stay home. Of course. I do. And I can't tell you how much anxiety there is at the thought/reality that at any given moment, for any given reason Ethan could be admitted again. I want so much for all of this to be behind us. To focus on Ethan being a little boy and concentrate on his development, milestones, growth. But unfortunately, most of his life, those things have had to take the back seat to a disease that I don't even feel like typing out right now. And yes, don't get me wrong, he has done AMAZINGLY and MIRACULOUSLY well (thank you, Jesus!). And I'm so thankful I could cry! But right now, I'm just an emotionally worn out chick who feels like feeling sorry for herself. Who is letting the thoughts of all that's been taken away from her (being a first time mom & wanting to experience certain things) get the best of her... instead of focusing on all that she's been given.

But don't worry... I've already told the Lord I'm sorry for my attitude.

today's the day

Please say a prayer for my hubby's hand surgery today. He has to check in at 10:00 this morning, and the surgery starts at noon. We're told the surgery should last about an hour and he should be able to go home shortly thereafter. As I've mentioned before, the surgeon won't know the full scope of damage until the surgery begins, so please continue to pray that there are no surprises and that the surgery can be done easily & the recovery, quickly.

Ethan will be having his potassium level checked today - at the same hospital, around the same time - so please also pray that the level has not hit the "danger zone". I pray it's either gone down, or at least stayed the same as it was on Monday.

My heart & mind have been back and forth this past week, somewhere between faith and fear. Not about any one thing in particular, but all of a sudden, about everything. There's a lesson in the midst of all of this for me, and truthfully, I'm hesitant to want to learn it. I actually have much more to say about this, but with the hustle and bustle that today brings, I feel it best suited that I save those thoughts for another day. I guess the bottom line is that I'm really struggling. And it's much more than Adam's injury, or Ethan's on-going monitoring. I'm being forced to examine and accept things that make me uncomfortable - at least, initially. That un-settle me. And I don't necessarily like it. But I know it's necessary. Because if the old Vacation Bible School song is true, then "He's still workin' on me, to make me what I ought to be".... and in all honesty, I know that He is. But I feel my need for "control" being asked of me. Among other things. And if you want to know a secret, I'm having a very difficult time with it all.

Pray for my boys today. I can't thank you enough.

update on my boys

Thank you all for praying for our little family.

I'll start with the hubby.

Adam's appointment with the surgeon went well. The doctor did a basic analysis of Adam's hand/finger movements and Adam seemed to have responded well. He will be having surgery this Thursday in an effort to repair the nerve damage (not much can be done about the severed artery). The doc seemed to think that Adam would be able to have almost all of his function & feeling back in his hand - which is great news. We're not sure what his actual recovery will look like at this point, though. The doctor will know more when he's able to look inside the wound during the surgery on Thursday. Please be in prayer that he finds no "surprises" during the procedure and that the surgery is successful, with no complications. My mom will be able to stay with Ethan so that I can go with Adam to his outpatient surgery. Be in prayer that nothing crazy randomly pops up with Ethan that would keep me from being able to do this.

Now for the baby.

Ethan's appointment in Boston went well. His fluctuating low-grade fever seems to have subsided for now. We're assuming teething to be the culprit, but it doesn't matter the cause if the temp gets up to 100.4 he has to go to the ER for antibiotics regardless. Thankfully, this didn't have to happen over the weekend. All of his blood work showed an increase in number which is great and overall he's doing well. The rash is thought to be a result of his body still in the "accepting phase" of the donor cord blood. The prayer is obviously that it goes away, but also that it doesn't get any worse. His face and head are quite covered with these little red bumps and blotchy red patches. There is one area of concern right now that's more important than the rest. Ethan's potassium level is quite high. If potassium in your body hits dangerous levels it can cause problems and damage to certain organs, etc. He's about 2 points shy of hitting that level so your prayers for this would mean a lot to me. The assumption is that his new antibiotic is causing the problem, so we're doing a "test" this week to see if the theory is correct. Pray that we find the cause of the elevation and that we can get it back under control without much problem. Other than that, our little trooper is doing very well.

And for the mommy?

Well, to say that I wish there were no more curve balls in our life for a long while, would be an understatement. I won't lie. Even though there is significant amounts of good in our lives, there is still so much of this that is, at times, difficult to endure. The daily care Ethan requires for his transplant recovery can be quite taxing. I can find myself frustrated & exhausted at the routines & restrictions that no family would like to know as well as we do. I have moments where all I want to do is scream. I have moments when all I want to do is cry. And then I have moments where I realize there's so much I am thankful for. I could go on, but I imagine I'd just be saying the same thing over and over. The bottom line for me is that unfortunately I've been made intimately aware that disease, freak accidents, things you'd never invite to be a part of your ideal "life" - are unfortunately possible. And there's a fear that lurks into your being when you've been exposed to those things that leave you asking "what's next", assuming (like only fear can do to you) that there's "worse" waiting for you around the corner. It's a dangerous mindset to let yourself sink into. It's a deep pit. And though it's easy to trip and fall into it, thankfully (thankfully!), there's a Ladder. He is the Ladder. God Himself. And He makes a way for you to escape the pit of fear, no matter how many times you fall into it. And lately, I've been falling into it quite a lot. But by His grace, He never lets me stay there for long. My self-pity, my paralyzing worry, my scared mind - stops - just long enough for me to hear Him say,

"My grace is sufficient for you..."

prayer, please

Just a quick reminder to ask for your continued prayers - especially today. Adam has an appointment this afternoon with the hand surgeon to find out the details of his injury (in case you didn't see the post below, Adam cut open his hand, from his index finger down to his thumb - down to the bone and cut an artery and a myriad of nerves on Thanksgiving morning... neither his hand or his arm are functional right now). Pray the doctor is thorough and wise in his assessment of Adam's recovery and "next steps". Pray for quick & easy healing of his hand! We're very thankful the wound remained stable with the 18 stiches, over the weekend. Please also be in prayer for me and Ethan's visit to Boston today. Ethan has struggled with a low-grade fever all weekend (leaving me worried that I'd be having to take him to the ER at any given moment!) and his now month-long rash continues to spread in random places over his face/head/abdomen/arms/legs. He's also been refusing to take his necessary "by mouth" meds lately, making things quite difficult.

And... if you have any prayers left... say a prayer for my sanity.

unhappy thanksgiving

Just a few short hours after my thanksgiving post (below), we had a major accident happen in our little family. My husband was trying to open a jar of pickles when all of a sudden the glass shattered and sliced his hand wide open. I'd never seen anything like it before in real life. The cut was quite deep and he needed a trip to the Emergency Room right away. This all took place around 10:00 Thanksgiving day morning. His parents were able to stay with him in the ER until I could get my parents situated to take care of Ethan and then I was able to go up there to the hospital and be with him. He ended up cutting one of the arteries in his hand and the laceration went all the way down to the bone. The laceration goes from the end of his index finger all the way down to his thumb. The initial ER doctor thought that the artery had clotted itself, so he didn't want to tamper with it until a hand surgeon could take a look at it - however, no hand surgeons are available until Monday. So he did a light stitching to keep the wound/skin closed and sent us on our way back home around 3:00 that afternoon. Within an hour of us being home, the wound ruptured again and Adam was bleeding profusely.

Back to the ER we had to go.

They took out the stitches and decided to tie off some of the veins that were bleeding and ended up re-stitching him in a much more detailed fashion. We were finally able to go back home around 8:30 that night. Needless to say, it was not a fun day. And my poor husband... he's on quite a heavy dose of pain medications and his left hand/arm is not at all functional at this point. So he's not able to do a lot of basic things right now. He has an appointment with a hand surgeon Monday afternoon, however, I will be going to Boston for Ethan's follow up appointment. His parents will be able to take him (he's not allowed to drive right now) and I'm very sad I won't be able to be with him.

Please pray that the appointment goes well and that the doctor will be thorough and have wisdom for next steps. We're not sure the severity of the damage or how long the recovery will be, or whether or not he will need surgery to repair the artery, etc. Please also pray for Adam's pain to decrease over the next several days and that God's favor and blessing would be with Adam's overall healing. The immediate prayer need is that the wound remains stable over the weekend until he is seen by the specialist on Monday.

Things are a bit challenging for us right now, as he's not able to help with Ethan (pick him up, hold him, feed him, change diapers, etc.) and he's not able to do some basic things for himself or around the house. He's in good spirits, but he's very anxious to see what lies ahead in the coming weeks/months after talking to the specialist on Monday. We would greatly appreciate your prayers over this situation, in addition to Ethan's on-going needs (rash still on his face & slightly worse today).

Thank you in advance for your prayers.... we appreciate them and you.

Trusting the Lord... day by day.

counting my blessings

Finding the exact words to share in this particular post on this particular day - Thanksgiving - well, let's just say there is simply so much to say. I'm at loss for words (hard to believe, for those that know me, but it's true) as I sit and contemplate everything, every thing in my life that I'm thankful for.

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There is a section of a Bible verse in the 23rd Psalm that I think I've only now begun to understand its beautiful illustration.... "my cup runneth over". If I think about how I'd sum up all that I have to be thankful for, truly, my cup runneth over.

This week I've not been able to help but think about every good and perfect gift that God has given me. I think about the love and support of my parents. The loyalty and friendship between me and my sister. I think about the beautiful hearts of my friends, new and old. I think about my husband and the absolute treasure that he is. Then of course, I think about my baby boy. And immediately tears stream down my face. Because I can't think about my son without thinking about all we've been through with him in his first year of life. And I can't think about all we've been through with him, without really letting the tears fall, in praise to the Lord my God for how far He's allowed us to come.

How do you say "thank you" for a miracle?

How do you properly express to the Lord how thankful you are for His tender mercy. His power. His protection. His grace. His comfort. Himself.

I sit here amazed. That's all I can say. Amazed and ever so thankful. So very, very thankful.

Happy Thanksgiving! I'm counting my blessings. Over and over. For every thing in my life - and every one in it. Thankful for each of you, who have many times carried us with your prayers, cards, gifts and encouragement... when we were too weak to carry ourselves.

Psalm 136:1-4

Oh, give thanks to the LORD, for He is good!

For His mercy endures forever.

Oh, give thanks to the God of gods!

For His mercy endures forever.

Oh, give thanks to the Lord of lords!

For His mercy endures forever:

to Him who alone does great wonders,

for His mercy endures forever...

Thank You, Lord.... my words fail to express.... my cup runneth over.

ethan update

Thank you so much for praying for Ethan yesterday! They did the transfusion slowly and his body seemed to tolerate it quite well. We were there for 6 hours, but we had a private room and were able to be relatively comfortable. Due to the length of his transfusion, they had us up on the "in-patient" floor, where Ethan received a lot of his care when he was first diagnosed. It had been a while since we were up there, (normally he is in the outpatient area) so it was nice to see some familiar faces of those who took care of him months ago. They were excited to see how much our cutie pie has grown! All in all, it was a fairly easy day and time went by fast. Last night, Ethan showed no negative reactions and I believe that after today he should be in the clear for any reactions popping up.

He does have a little bit of a cold/congestion, but nothing too serious and it's not accompanied by a fever so that's wonderful! We think this could be why he all of a sudden started vomiting again. He'll start coughing, then gag, then vomit. So hopefully that will subside soon. His rash is also looking soooo much better on his arms and legs. His face/head are still a small issue, but the rest of his body is looking great.

I honestly can't thank you enough for praying for us all the time.

I wish I could explain the peace and comfort I feel after I post a particular request here... I simply rest after I type out our needs, knowing that you will join with us in prayer, and that God will remain faithful. I do not take this form of communication I'm able to have with you lightly. I never have. I'm thankful for this outlet and for your willingness to keep reading... and praying. With all the blessing we've encountered through answered prayers for Ethan... I want to remind you that you have been an answered prayer of mine.

As promised... here are some updated pics of our 10 month old little lad just chillin' at home. I have a few more, but I'll save them for Thanksgiving (they're more festive!).

just a reminder

Please be in prayer for Ethan today as we head to the hospital this morning. As I noted in my last post, he will be getting a heavy duty transfusion today (see previous post for more detail) and I'd appreciate your prayers for him and for protection this week against any possible side effects.

On a side note, his vomiting has returned, and the rash is still spreading on his face, though not terribly inflamed right now. Thank you for thinking of us and praying for us today & the days following this transfusion.

Oh yeah... I almost forgot to tell you... our little man turned 10 months old yesterday. I'll post pics soon!

prayer requests and updates

I have an update for you regarding the 18 month old foster child of a dear family we know. Remember me telling you about Kevelyn and the Feliciano family? Well, I have a praise report... she has finally be added to the transplant list for her much needed liver and small bowel transplant. The prayer now is that she won't have to wait long for the transplant itself. This family and this child have a very long road ahead of them... prayers for strength for this family, God's perfect timing, details with the state (as she is a foster baby), and Kevelyn's overall healing are still much needed.

I also have a prayer request for Ethan. His rash. Still an issue. It's slightly better on his arms and legs, however, it has made it's way to his face & head. And since it's on his face, it will be much more tricky to treat, since any topical medication would be in danger of getting into his mouth and eyes. He still doesn't seem to be too irritated by this annoying rash (going on 3 weeks now), but my main concern right now is that the rash is around his eyes (both underneath and above on the eye lids). Small red dots and slightly inflamed skin. It's also on his cheeks, chin, forehead, and on his head behind his ears, but for some reason, I am more focused on his eyes. I really don't like the idea of this becoming a major eye irritant. I imagine swollen eyes or something along those lines and I'm not a fan of those possibilities... so I'm praying, and asking you to pray that this rash clears up once and for all. And that his eyes do not get worse (the skin around the eyes) and that we can get to the bottom of the cause.

Please also be in prayer for our hospital visit on Monday (in Connecticut). A particular area of Ethan's immune system that they measure via his blood work has come back pretty low. For this reason, he will need a certain transfusion on Monday that will take anywhere from 4 to 8 hours (due to the side effects and pre-medication he will need, this transfusion must go through his system very slowly). I'm more concerned with the side effects than I am actually having to be at the hospital so long. Fever, and a list of other problems could result after this transfusion, and I really don't want any issues over the Thanksgiving holiday that would put us back into the hospital (like a fever would!). God has been extremely gracious and faithful with Ethan not having to be re-admitted thus far, (not even a teething fever has developed!), and I just ask for your help in praying that continues and that we experience no complications with this new medicine transfusion he will get on Monday.

I close with a sweet blessing... Ethan has started eating from his spoon! You may recall that was a necessary thing his nutritionist had told us he needed to do upon our discharge from his transplant. And he fought me for weeks and weeks. Not at all interested in food other than his bottle. Well, this week, he all of a sudden opened his mouth and took the food. My mouth opened too, but out of shock and gratitude! I know it's a small thing, but it's a big blessing to this mommy, to see him open-wide for the spoon headed his way, and not cry or scream and turn his head in opposition. I literally let small tears of thankfulness fall to the Lord this week for such an encouragement to my heart. Oh, and another big blessing is that his daily vomitting has subsided this week. You can't imagine the glee of not having to change his and my clothes 3 times a day.

Thank you for your prayers over these things and for your smiles when they are answered.

food for thought

One week from today we will be celebrating the Thanksgiving Holiday, and it's been heavy on my mind (this year in particular) to be both thankful for what we have and to show kindness to others. Money is tight for everyone these days, and it only makes sense that we as families & individuals focus on "necessary" spending. But, I think it's also necessary to take care of those around us at the same time. Whether they be strangers, family or friends... take the time to be kind. I think it's one of the most lovely of things for someone to receive random acts of kindness from someone else. I know our hearts have been touched by such deeds from many people over the past 7-8 months with our situation with Ethan. Search your heart. Maybe you donate a toy for Christmas, maybe you donate food to a food bank, maybe you donate your time to rake leaves. Whatever it is, know it will be a blessing to someone else. Like I said, I know money is tight. But just think about how many canned veggies a $10 bill could buy. Or how many 2 liters of soda a $5 bill could buy.

You can contact your town hall, your local church, or even google your search... there are needs everywhere. Our family knows what it is like to be blind-sighted by a situation. And though, we have so many blessings in our life, I can never take for granted that we all will have great needs at some point in our lives. Today is one thing... but tomorrow could be a different story... for all of us. We are all at the mercy of God's grace... and our neighbor's helping hand.

Just a thought.

I encourage you to be a blessing to someone over these next several weeks. And thank you for the blessing you each continue to be to us!

Be kindly affectionate to one another with brotherly love,

in honor giving preference to one another... Romans 12:10

just a small thought for the day

Earlier this month, Adam and I took Ethan to his first soccer game. It was a nice time for the three of us to get out and do something together - which is extremely rare since Ethan can't be in public places, however he can be outside! So we bundled him up (it's chilly up here in the north east! And we had a good time watching him, watch all that was going on around him! Oh and yes... that is a Boston Red Sox hat he's wearing. Gotta start 'em young!

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That's not all I wanted to share with you today, though. As I was thinking more this morning about how there are so many of us who struggle and suffer in a variety of ways, for a variety of reasons, I noticed this Scripture verse happened to be on my calendar for today...

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2 Corinthians 4:17 - For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory...

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And I don't believe that the words "light affliction" are intended to downplay the difficulty of the weight we sometimes have to bear in this life. I take it to mean that, in the end, what we've had to endure will be considered worth it. We will come to a point where we can honestly say... my affliction was "light", compared to the abundance of the Lord's graciousness. Our affliction isn't without purpose. And in due time, God will bring us into incredible blessing and restoration. Either this side of Heaven, or once we get there. Or maybe...both.

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Don't lose hope.

from my heart to yours

Over the past many months, I've been fortunate enough to hear from many who have been called to walk this same rocky road Adam and I have come to know. It's not a path you'd ever choose to take. In fact, if there was a warning sign somewhere along the way, providing you with the details you'd soon encounter, I'm quite sure we'd all turn around and walk... run... the other way. But we don't get that opportunity. However, the opportunity we do have is that we can decide how we will walk down that road.

Many of you have shared your own burdens with me. Some reading right now have a very sick child - with odds stacked against him/her. Whether by cancer or some other dreadful disease that you wouldn't wish upon your worst enemy, let alone your son or daughter. I never, in all my life, thought I would know what that felt like. But I do.

Some reading right now face your own illness. A broken relationship with your spouse. Or even the death of someone you love. Anything that threatens to steal your dreams... your quality of life... can spark the kind of tears that come from deep down in your soul. The kind of tears that actually cause your body to tremble and leave you physically exhausted after the last one falls. I never thought that I would know such crying. But I do.

Some reading right now have questions. Why me? When will this be over? What will life look like when it is? Is this really what my life is supposed to be about? What if I never get the opportunity to (fill in the blank)? What do I do now? Where do I go from here? I never thought that I'd have to examine such questions with the level of detail in which I've had to face. But I have.

I know I've heard from some. And I want you to know that I've been blessed by your trust in sharing your own journey with me. But in case your reading this, and we've never "met", I want you to know this is for you, too. This is for everyone who cries for loss... for those who ask the questions that are sometimes impossible to answer... for anyone walking down a road of their own that seems to have more pot-holes than pavement. I understand. In ways only explainable from one broken heart to another. But I also know and understand that whatever has been broken, can be mended. And just as you have been walking this journey with me, I want you to know I'm likewise walking with you. Not physically, though I would if I could! But prayerfully. This week especially. As I praise God with tears of thanksgiving for His mercy, I give those same tears over for you, praying that if you know Him - you'll cling to Him... and if you don't know Him - that you'll find Him.

How you will be able to walk down the path of your life depends on Who is walking beside you. We don't get the smooth road every time. But we do get Him - His comfort, His rest, His strength, His peace, His purpose... and only He can make our paths straight. All we have to do is ask. Then believe.

Trust in the LORD with all thine heart;

and lean not unto thine own understanding.

In all thy ways acknowledge Him, and He shall direct thy paths.

Proverbs 3:5-6

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Simply trusting every day,

Trusting through a stormy way;

Even when my faith is small,

Trusting Jesus, that is all.

Brightly does His Spirit shine

Into this poor heart of mine;

While He leads I cannot fall;

Trusting Jesus, that is all.

Singing if my way is clear,

Praying if the path be drear;

If in danger for Him call;

Trusting Jesus, that is all.

Trusting Him while life shall last,

Trusting Him till earth be past;

Till within the jasper wall,

Trusting Jesus, that is all.

Trusting as the moments fly,

Trusting as the days go by;

Trusting Him whate’er befall,

Trusting Jesus, that is all.

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(hymn excerpt - words Edgar Stites, music Ira Sankey)

some encouragement for the weekend

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We complain about the cross we bear but don't realize it is preparing us for the dip in the road that God can see and we cannot. Whatever your cross, whatever your pain, there will always be sunshine, after the rain... Perhaps you may stumble, perhaps even fall; but God's always ready, to answer your call... He knows every heart ache, sees every tear, a word from His lips, can calm every fear... Your sorrows may linger, throughout the night, but suddenly vanish, by dawn's early light... The Savior is waiting, somewhere above, to give you His grace, and send you His love.

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I received this beautiful illustration via email and just had to post it here. Hopefully it encouraged your heart, just as it did mine.