happy halloween!

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I'm not a fan of "scary", but I am a fan of "cute"! And I have been so excited to put Ethan in his first halloween costume from his Aunt Kim, Aunt Kelly and Aunt Kristi. Isn't he just the cutest set of bones you've ever seen! He would smile and giggle every time I put down the camera. But as soon as I picked it back up to capture the sweet moment... he would stop. Oh well!

After Ethan's outpatient visit yesterday we learned that we still do not know what's causing the rash on his little bottom and leg, but they still aren't extremely concerned at this point. We also learned that his ANC level (what they use to gauge his immune system) has decreased in number over the past week - by close to 2,000 points. There could be many reasons/factors, one of which being that Ethan's body could be in the early stages of fighting a virus or infection. We will learn more during his visit in Boston on Monday, but please be in prayer for this. Maybe nothing more than an ear infection, but we want his body protected from even the most minor of problems. He was on the borderline of needing a blood transfusion, so it's likely he will get one on Monday - unless the Lord sees fit to jump start them over the weekend!

Oh wait... Ethan is now here at the computer desk with me and he would like to say a few words....

nn bngbgvfnr8ogtiotiitipogjkoirpr[t rp00494oitoitoitoitgiotoioriou

And there you have it. Straight from Mr. Skeleton himself. Well said, kiddo!

I want to also say thank you for your prayers for me. Lately, I've felt both enlightened & inspired again. But more on that later... It's time for Ethan to eat, so we"ll have to cut this short.

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Anything else you'd like to say Young Skeleton??

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vgvjnmjhbjhvjvvhuhyyuuj happyhalloween bvbnbnbvgyyythyhyhy

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He is very talented.

update

Thank you for your prayers. The appointment in Boston yesterday went well. Ethan's rash doesn't seem to be a huge concern right now - meaning, they do not believe it's related to graft-versus-host-disease - which is very good. We're trying a triple paste on it now to see if that resolves the problem, so hopefully we'll see positive results soon. Everything else about his health seems to be doing great. The only slight exception being that his red cells continue to trend downward in number, as opposed to going up each week. They say this is quite normal and is not a concern right now, but obviously, we continue to desire the numbers to go up on their own. It's likely Ethan will need a blood transfusion again later this week, and the hope is that this would be the extra dose he needs to get him over the hump... although we thought the last one was going to be able to do that for him. Either way, it's not a huge concern, but one we'd like to see go away regardless. We want his marrow to be handling the "supply and demand" of his body on its own without the need/dependency on transfusions. He continues to be quite fussy at times - and I do spot about 3 teeth poking their way through on top - so I'm hoping that's all it is. He's stopped taking jar foods lately, and I was worried about a setback, but his nutritionist says that he might be on target as more of a 6 month old baby than a 9 month old baby, and to just continue to practice with him... though they would like to see this developmental & nutritional goal eventually accomplished.

As a side note, I do have to say that I'm quite thankful to the Lord that Ethan appears not to have caught the cold I've had for the past week and a half. No fevers and no cause of concern in that area... I'm so very grateful for your prayers over that.

Before I go, I thought I'd post a couple of pictures of our little man chillin' out at home.

day by day

I have found myself, over the past 5 or so weeks that we've been home, full of so many different thoughts and emotions. Coming out of the thick of the battle (or at least hoping that we have), I'm finding myself pulled towards so many words that define all the various stages of my trying to mentally process all that has taken place in our lives. I call it stages because for every one step forward, mentally, there are two steps backwards.

Amazed. Thankful. Worried. Vulnerable. Afraid. Sustained. Determined. Weak. Tired. Weary. Still. Hopeful. Ready. Scared. Loved. Frustrated. Critical. Sad. Blessed.

Trying to get back to normal has been so wonderful, but there are many times that I also feel so lost. The past 7 months of our lives have been so planned and focused on Ethan's treatment protocol... step after step of following a plan... and we've now completed each of the phases that were mapped out for us, and it's easy to find yourself thinking..."ok, what do we do now"? And when you start (or when I start) moving forward with getting our lives back, instead of confidence, I find fear. I know it sounds backwards. God has shown Himself wonderful in Ethan's live (and in ours) over and over and over again. Yet, I have to be honest, when something like this has been allowed to enter your life, regardless of the outcome, I think you can't help but feel vulnerable - even if it's only for a moment. And I do. My heart knows better. Trust me on that. But I also know that we do not know the thoughts and plans of the Lord... and sometimes there's a significant temptation to be scared of that.

I don't have a "conclusion" so to speak, but more of an open heart of prayer to the Lord lately that He'd, once again, get through this thick skull of mine and restore His joy to my worry-wart self.

Be in prayer for us tomorrow (Monday) as we go back to Boston. The assumed yeast rash Ethan was diagnosed with last Monday has now spread. I'm not sure what this means, but I'm hoping it's easily treatable and possibly even re-diagnosed maybe more correctly. Also, Ethan has been quite fussy lately (not quite himself). Of course, my mind goes in a million directions of what could be wrong... with all the potential tummy-irritating medications he's on, long term side effects from the transplant that he could encounter at any time, or just normal baby issues like teething! It's very hard for me to tell what's wrong at times and very easy for self-doubt to occur. Prayer for wisdom is an understatement!

I'll close tonight with a hymn that has become one of my favorites as of late. I love it when the Lord sees fit to speak to me in a song.

Day by day, and with each passing moment,

Strength I find to meet my trials here;

Trusting in my Father's wise bestowment,

I've no cause for worry or for fear.

He, whose heart is kind beyond all measure,

Gives unto each day what He deems best,

Lovingly its part of pain and pleasure,

Mingling toil with peace and rest.

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Every day the Lord Himself is near me,

With a special mercy for each hour;

All my cares He fain would bear and cheer me,

He whose name is Counsellor and Pow'r.

The protection of His child and treasure

Is a charge that on Himself He laid;

"As thy days, thy strength shall be in measure,"

This the pledge to me He made.

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Help me then, in every tribulation,

So to trust Thy promises, O Lord,

That I lose not faith's sweet consolation,

Offered me within Thy holy Word.

Help me, Lord, when toil and trouble meeting,

E'er to take, as from a father's hand,

One by one, the days, the moments fleeting,

Till with Christ the Lord I stand.

baby kevy

I wanted to start this post by sharing an update on baby Kevelyn, who I've mentioned here before (you can click on the link found on the right hand side of my blog, towards the bottom, to be introduced to her story). I spoke with her foster mom, Hope Feliciano, recently and she shared with me how the struggles have continued to increase for this precious little girl. Kevelyn (Kevy for short) is still in the fight for her life, even as I type this to you. She has been re-admitted back to the local Children's Hospital due to complications that would break your heart. To date, she is still not on the donor list for her need of a liver and bowel transplant. Hope has asked for specific prayer that this would happen in the next 2 weeks. Kevy is 18 months old, and without these two transplants, she will not survive. After her name is added to the donor list, it could still take months before a transplant is available, however, getting her on that list is crucial at this point. And as she waits, her health continues to decline. All of the steps involved in her care are so detailed, involved, and just plain messy and heartbreaking, that I would also ask for your continued prayers for the Feliciano family. They are hoping to be able to adopt Kevy once the paperwork settles, however, I can only imagine that with 2 kids in college, one in high school, one in first grade, and one other sweetheart that's not yet of school age, how full the hands of this family are.... and yet, also how the love of the Lord must be shining through them as they all pull together for the sake of this little girl who needs them very much. To hear Hope talk about Kevy, she is such a happy toddler. Life has been unkind to her, yet she shines in a way that people can't help but fall in love with her.

Ya know, I had intended to share some things that have been on my mind lately, but I've changed my mind... I think I'll wait. I'd rather not take away from the needs of this family and especially this little girl. She is in need of much healing... and this family much strength... and I know, I know, all of it is possible... if God's people pray.

Matthew 18:19-20... Again I say to you that if two of you agree on earth concerning anything that they ask, it will be done for them by My Father in heaven. For where two or three are gathered together in My name, I am there in the midst of them.

9 months old today!

Sweet baby boy...

You bring purpose and pride to mommy... and you're the light of your daddy's life. We love you so much! Your life has taught us many things. Some of which we've yet to fully comprehend. But through you, we've grown. And inspite of everything, you continue to grow as well... in so many ways! Look at you! 9 months old already.

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thanks for praying!

Ethan's rash ended up not being shingles (thank You, Lord!), however, that will be a possibility for him for many months to come (as it is with most bone marrow transplant patients). It appears he has some yeast in his mouth and showing up in his diaper area in the form of a rash. It's easily treatable with at-home meds, so I'm very thankful! We are still seeing a slight decline in his red cells, which isn't a cause of concern right now, but the goal is to have those numbers increase, not decrease... which would enable him to not need transfusions, etc. He didn't need any transfusions this time, but could in future weeks if the numbers continue to decline. Other than that, he's doing great. Oh, and as it turns out, I'm quite sure I have a cold and possibly a slight sinus infection. I think I'm getting over all of it with the help of medication (and your prayers!), however... as I'm sure by now you know what I'm going to say... I can't help but be worried that Ethan will start to show signs of my cold, etc. So far, he hasn't... and I'm praying that he doesn't. Of course, I know better than to worry. But I won't lie and pretend that I'm not, because the possibility of him getting sick freaks me out! I'm being extra careful (and have been) when I'm around him, but I'm sure he's already been exposed to whatever I have, so thank you for your continued prayers for his protection. His immune system is still so very weak.

Continue to pray for my strength, if you think about it. I'm so very tired and my body is run down with being sick and everything else that's going on. I'm also really struggling with second-guessing every decision we make when it comes to Ethan's overall "care". I know it's an attack due to my "spiritual defenses" being down. I'm worrying, instead of trusting the Lord. And truthfully, I don't have the wherewithal right now to work on fixing this problem... this "glitch" in my system.

Well, my little man is wanting to play, so I'll have to end here for now....

Thank you for thinking of us!


p.s. - Thank you so much for all of your prayers for Micaiah Grace Lee (newest daughter of Mike and Amy Lee). Amy recently gave birth to a beautiful little girl, who does not have Downs Syndrome and she is in great health overall. Praise the Lord!

prayer request for today

Please pray for me today. Ethan and I will leave in about 30 minutes (6:30am) to head to Boston for his appointment. I've been sick all weekend. We're hoping and assuming that what I have is still allergy-related (which is not contagious), but I've got the whole package (runny nose, sinus congestion, etc)... I've been mildly stressed that what I have may have morphed into a cold and that I could have passed any of the germs to Ethan (though he's not showing any signs of being sick right now). Also, I found a small/unusual rash on Ethan yesterday, and I've been sick to my stomach that it might be something that would require us to be re-admitted to the hospital. He's at higher risk for shingles, and many other rash-like conditions, and most all of them "mean" something that would require a hospital stay. Now, it could just be a sort of diaper rash, or something less serious that can be treated at home... but... if you could pray, I'd greatly appreciate it. I'm just out of sorts today - and have been all weekend - and need an extra dose of God's grace and mercy today.

stay away from my baby!

Oh you think you're sly. You think you can hide from me. But I saw you. I saw you lingering around my baby's crib while he was resting during his nap. He looked like fresh meat to you. I could see the fantasy building in your little eyes. You were getting ready to make your attack. Thinking you had planned everything so perfectly. I mean hey, the crib is black, making it a perfect backdrop of a disguise. But what you failed to consider was the power of a mom. Oh yes... the dreaded "m" word. And what you failed to understand is that a mom will do anything to protect her baby. I must admit it didn't phase me at all to end your life. It was instinctive. And I'll just say it... it felt good! And I was quite proud of how I swiftly caught you while you were in mid-flight, making your way down to my baby's leg. That's right. I caught you. And watched with glee as you went down the bathroom sink.

So listen up all you other mosquitoes out there!

My baby's fresh skin is off limits to you!

Take heed... or beware... because I'm a mom...

and I do all of my own stunts.

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ethan update

Both of Ethan's appointments this week went well! After needing a blood transfusion last Friday, his red cells seem to be growing on their own, once again. We believe he just needed a little bit extra of a cell dose to get him over the hump, but we hope the numbers will now start to climb higher and higher each week, on their own. He's not shown any signs of rash, fever or other concerns... and this continues to be a HUGE blessing. I woke up with a very sore throat this morning. Very sore! The "it hurts to swallow" kind of sore. So Adam took the day off of work - which required him to shuffle his day of meetings around quite a bit - but he didn't flinch one second at wanting to take care of his family. I am extremely appreciative for all he does for us!

So, Adam ended up taking Ethan to his outpatient visit today in Hartford, without me. It was my first time ever to miss one of Ethan's doctors visits... and I felt very sad about it, but I knew it was best that I not be with the little guy too much today until I knew whether or not I was contagious. I went to the doctor myself while they were out. Looks my illness might be allergy related - which would be fantastic! Since allergies aren't contagious. And I showed "negative" on a strep throat test - which is also fantastic! However, the doctor did warn that I could still be in the early stages of something developing, but hopefully, it's just allergies and the meds she gave will take care of it. I also got a flu shot. Anyway, if you think about it, pray that Ethan is protected over these next several months of cold/flu season. Pray his body is fully protected from any infection... because as you know, any infection, even a small cold, could be quite dangerous for him.

Oh! I also wanted to thank you for praying for the prayer requests I gave about Ethan's aversion to eating from a spoon (jar food) and his sitting up. I've been soooo encouraged in both of these areas of development! He takes food regularly from a jar now - he doesn't eat a ton of it, but he lets you feed it to him and he doesn't shy away from it thinking that it's medicine! This is such a sweet answer to pray for me. Also, we've been practicing sitting up. He's getting much better! He doesn't have it mastered yet, but he's getting much stronger and can sit alone for longer periods of time before falling over. His ability to develop into all of the stages that a normal baby should, is a daily prayer of mine. Next week he turns 9 months old.... I simply can't believe it.

And finally, since it's okay for Ethan to be outside (but away from large groups of people) last weekend Adam and I took Ethan out to enjoy the nice Fall weather. It was such a wonderful day to be out together as a family. Ethan got such a kick out of seeing everything, too... colorful trees, ducks, and all kinds of stuff!

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now continued...

I was re-reading what I posted last Sunday evening. I got to the part where I said that even if God hadn't spared our son, I'd know that He had a wonderful/necessary purpose for it and I'd have accepted it. I wanted to come back to that here for a second. Because, I never intend to say things here unless I mean them. And I'm quite reflective when I'm writing so I can honestly say that whatever my fingers bring to life, is very purposeful and intended. I say this because I wanted to wipe away any cause for doubt that I might not have meant what I said. I meant it.

However, I didn't expound on the details of how I knew I could make such a statement.

When Adam and I first found out about Ethan's diagnosis we honestly were not sure that he'd survive. Even the doctors were very careful to give us too much hope. We were told that even with a successful transplant, Ethan would have a 50/50 chance of long term survival. I get choked up now just thinking about that painful realization we had to face. And it was in those early moments of Ethan's treatments that Adam and I really understood that we might lose our son. We had to understand that such an end result was possible and could be in God's plan for our lives. We cried. Many times. Many, many times. And each day was such a question mark, on many levels. But we chose to believe that whatever happened, God was ultimately working a greater good in our lives and in the lives of those around us.

Faith.

Yes, certainly, absolutely!! a piece of us would have died, deep within our beings - and may have taken years, or even a lifetime to fully heal - had we lost our precious baby. But in my heart I knew that God wasn't any less than I've always known Him to be, and that He would have brought me out of the pit of pain and to the other side, eventually enabling me to see the purpose.

So that's the explanation behind the statement, "But Who, even if He hadn't, would still have my love and admiration because I know such a result would have been necessary for the growth/development/maturity in my life or someone else's, resulting in His perfect plan for us to see and understand another dimension of who He is".

Whether it was necessary or not, I wanted you to know that my saying that wasn't without meaning, knowing that I had very deeply & personally experienced such a possibility... and had to, in my heart, make such a decision.

A step of faith. Either way. A step of faith.

Proverbs 16:9 - A man’s heart plans his way, but the LORD directs his steps.

Now I'll also say that faith is not easy. The concept is easy. But the action is not.

Easy Concept - Trust in the Lord with all your heart, and do not depend on your own ability or your own reasoning. And never worry about any of the details of your life... leave them in God's hands. Sounds good! Remove the drama and stress and let's go to the beach!

Difficult Action - uh... but... what if... what if... what if... I need... it's impossible... I can't... He won't... now not later... etc. Basically, worrying - being a control freak - fear, worrying, oh and worrying some more. (That would sum up my daily struggles!)

We could live in peace, but we're afraid to let go. We could live in peace, but we think a detail will get overlooked. We could live in peace, but we believe that if we don't do something, it won't get done. We could live in peace, but we think our lives won't be what we want if we aren't controlling them. But, the bottom line to it all is that we could live in peace. If we only allowed ourselves. And allowed Him.

I'm don't have it all together in my life... I just know that faith exercised, (like a body that is exercised), yields much reward.

to be continued...

I have so many things that I'd love to bend your ear about. Seriously. My mind stumbles upon various things throughout the day that cause me to immediately think, "I should blog about that!". I suppose I'll save all my trains of thought for other days... but I will say that I've had a change in perspective that has changed the way I view certain things. Things I might not have thought twice about before I was a mom, or a wife... or maybe, things I might not have thought twice about before I saw God differently through my roles as mom and a wife. What do I mean by seeing God differently? Let's back up... I became a Christian at the age of 7. It was a choice that I was excited to make, and I remember most of the details around that decision. However, it has taken years to really understand what that decision meant. That's how it goes though, and there's nothing odd or strange about that. When a baby is growing and developing they have to be taught, they have to learn, and they grow/develop/mature. It's the same process with Christianity. That in itself is not a new concept. What has been a new concept for me is the depth of God Himself. You don't walk through the Valley of the Shadow of Death without being changed. Simply stated, you're either changed for the better, or your changed for the worse. But if you can hang on... if you can walk through the shadows, through the valley, not knowing where your foot is going to land, but being willing to trust that there is a River of Life on the other side... and that each step you take is bringing you one step closer to it... then through your steps, through your journey, you will see a glimpse of the depth of God.

And if you're really looking, you'll see more than a glimpse.

You'll see an unconditional love that you can't explain or earn. You'll see a power that goes beyond our own abilities or anyone else's. You'll see that faith goes beyond reasoning or understanding. You'll see peace that goes beyond pain. And you'll see that it's all available to you.

It's a choice.

Pure and simple.

To either believe, or not.

If you don't believe in Jesus Christ, then it's a choice to take a step of faith and believe in Him and trust Him with your life. If you are already a believer, then it's a choice to believe Him and likewise trust Him with your life.

If you do... He will... all of it.
If you don't... you're left to fight this battle of "life" on your own, without the proper armor that you need.

It's as simple and as difficult as that.

And I'm not talking about "church" or "religion". I'm talking about the Lord. The One and Only. Who spared my son's life for a purpose bigger than I even know. But Who, even if He hadn't, would still have my love and admiration because I know such a result would have been necessary for the growth/development/maturity in my life or someone else's, resulting in His perfect plan for us to see and understand another dimension of who He is.

Much more to say.... but so little time tonight.

To be continued...

cutie booty

I know words will not do this justice, but I simply have to tell you about our squirmy little man. This afternoon I was doing a complete "spring cleaning" in Ethan's room. Since things have to be extra clean - so to speak - for his situation, my goal is to deep clean each room/area of the house each weekday. Anyway, today was Ethan's room. No wait, I take that back... today was supposed to be the upstairs bathroom, but I did Ethan's room instead... anyway, that's not important to my funny story. After I had done all the cleaning, it was time to clean him (diaper change). I put him in the crib to change him since it was just easier on my knee to do it that way. I realized that he had soiled (to put it politely) through his clothes so he needed to be stripped down! As I was trying to put the new diaper on his naked little body, he decided it was play time. He started rolling.... and rolling.... and rolling. All over the bed! I'd get one side of the diaper attached and he'd roll the other way - kicking and giggling the whole time. It was so funny, I could barely focus on what I was doing! He wiggled so much that the diaper had no chance of survival. And before I knew it he was rolling all over his freshly clean bed, as bare as an oak tree in a Connecticut winter! And every now and again, he'd stick that little booty up in the air and start laughing in the most adorable sounds. It was just so so funny!

Anyway, I also wanted to let you know that we were able to have Ethan's outpatient visit today here in Hartford. We're now able to go to Boston once a week on Mondays and to our local children's hospital once a week on Thursdays. This is much easier! Ethan's doing great, however, his red cells did drop slightly so he will need a transfusion tomorrow. We will be going back to the hospital here to take care of that and we will check it again on Monday in Boston. I don't think this means anything, we just obviously want his body to start making the red cells on his own, consistently. His platelets however, went up in number! And that's very good!

Joshua 23:14 - Behold, this day I am going the way of all the earth. And you know in all your hearts and in all your souls that not one thing has failed of all the good things which the LORD your God spoke concerning you. All have come to pass for you; not one word of them has failed.

fun photos... and a p.s.

And for the p.s. - Could you be in prayer for my left knee? Several years ago, right before my wedding actually, the slight tendinitis in my knee from my days of playing tennis in high school and other activities, turned into chronic (and very painful!) tendinitis/bursitis. It got to the point that I couldn't put any pressure on my left leg at all, and the pain impacted my daily life VERY much. I had intense physical therapy and a removable leg cast (from my ankle to my thigh) for several weeks - right before my wedding! And our honeymoon was to be in Disney World - lots of walking! Needless to say, I was nervous. But we were able to get the pain under control and it has only bothered me occasionally.... until now. The severe pain is back. And it has been very tricky today (and it hurts!) to walk up and down our stairs, get on the floor with Ethan, etc. I put a support brace back on my knee that I had to use off and on a few years ago... but you can imagine how difficult it is to not be able to walk or move comfortably AND take care of an 8 1/2 month old baby. Have I mentioned that it's quite painful? The intense pain has stopped me in my tracks - literally - several times today. So, if you could be in prayer for the flare up to go away, I'd be extremely thankful!

join the cheering section

Today was a great day!

I could just leave it at that but I won't, sweet reader.

Ethan and I had our routinely Monday morning trip to Boston for his outpatient visit. This was going to be an interesting visit because last Thursday they held off giving him a blood transfusion because of certain indicators that implied he might start developing red cells on his own. Therefore, they didn't want to give him blood until they tested their theory for a few days. Well, two things happened when they his blood results came back, that have never happened since we were admitted to Boston for Ethan's transplant back in early August.

Drum Roll, please....

No, seriously, this deserves you tapping your hands on your desk or table right this minute.

Are people looking at you yet? Wondering what you're doing? If you're alone, are you looking at yourself, wondering what you're doing??

Good! Because then you can tell those staring at you AND tell yourself that you are about to witness even more proof of a magnificent miracle that has taken place in a little baby boy's life. Side note, feel free to insert the words "cute" or "most adorable" or "baby model material" in your description, if you so desire.

Okay, okay... I'll tell you now. Like I said, this has never happened in Ethan's body since his transplant. Actually, it's never happened on his own since his diagnosis of cancer back in April, without the help of medications promoting/helping. The first blessing is that his platelet count did not drop in number - it in fact stayed the exact same as it was last Thursday. And don't be tempted to think that is not worth your drum roll, because this is huge (I'll explain in a sec)! And the second blessing is that his red cell count went UP slightly in number - also a very huge deal! See, these two indicators mean that Ethan's body is starting to create platelets and red cells on its own. His marrow is working! Did you read that? His marrow is working!! His bone marrow was at one time, only a few months ago, killing his body. Physically killing his body. And now, his bone marrow is working hard to create all that was lost, and it's doing so on its own. This is simply more tangible proof that God is who He says He is. More tangible proof that our faith should not stand in the facts or even in the most professional of opinions, but only and fully in the power of God.

And trust me, that's worth a drum roll!

You want to do it again don't you?

Heck, you could even stand up and give a standing ovation to the wonder of God's handiwork! Go ahead.... I dare ya. I double-dog dare ya! Why? Because taking a stand for the cause of Christ is the best move you can make. I assure you of this.

Ethan's cancer is in remission. The transplant is considered a success. And I'm excited to see, in the years to come, the rest of the miracle that will come to fruition.

Rest of the miracle?

Yes!

We received a laundry list of long-term side effects and limitations to expect from various areas of Ethan's life as a result of the intense treatments he received before and during his transplant. Cataracts, infertility, significant decrease in his overall height, graft-versus-host-disease, delayed development, and the list goes on. And I sit here tonight, believing and knowing God's miracle is not limited to any one thing or area, because God is not limited by any one thing or area... and I look forward to this gift from Him, that will keep on giving in the years - many years - to come. I look forward to checking off next each area of the list of "limitations" that we've been told to expect, the word MIRACLE. MIRACLE. MIRACLE.

I've witnessed answered prayers many times in my life. And I am soooo thankful for those times. But I have never witnessed a miracle. I've read about them in the Bible. Believed that God was/is always capable of doing the impossible. But, I've never seen with my own eyes, God's power in the form of a miracle.... until I met my son.

And now you have, too.

Is "miracle" too strong of a word? No. Absolutely not. All you have to do is look back in my previous posts from Ethan's initial diagnosis, or 'google' the type of leukemia he had (JMML), and you'll see... the odds were stacked against him from the beginning. Kids do not often survive this rare form of cancer. In fact, it's so rare, that the treatment plan is often a sort of trial and error. Ethan was never expected to do well. And the treatment and transplant was expected to be very difficult for him. But it wasn't. And he has done VERY well! Oh goodness, now I'm crying again.... but you just take my word for it..... this was certainly a miracle. And it's a miracle and gift that will keep on giving in the weeks, months and years to come.

Thank you for praying. You have been here waiting, watching and believing right along with us. I owe you so much. I love you so much.

One last thing before I call it a night...

When we were discharged from the hospital a couple of weeks ago, we were given a set of guidelines from a nutritionist and a physical therapist in which we needed to be working towards with Ethan. Well, since we are constantly shoving a syringe of medicine in his little mouth 9 times a day, he has developed an oral aversion to taking a spoon/jar baby food. If it ain't a bottle, he wants nothin' of it. However, introducing jar foods and other finger foods is necessary for his development, etc. Also, Ethan isn't sitting up by himself. Not a huge problem, but again, an area that we have to work at. Hitting these milestones with his food and physical activity is important to illustrate and help us gauge different things. So... if you could be in prayer for these two areas specifically, I would greatly appreciate it. I'm having fun "practicing" with him, however, I would like to see some progress being made. Rest assured there will be more areas of development that I will need your help in praying for down the road, but right now, these are the focus.

Thanks a bunch.... for everything!

Isaiah 26:4 - Trust ye in the LORD for ever: for in the LORD JEHOVAH is everlasting strength:

peek-a-boo

I'll explain why I chose that title in just a second, but I first wanted to take a minute and thank you for your encouragement in your comments and emails, and likewise for your prayers.

I hesitated to share with you all the details of what I had been dealing with the last several days because I didn't want to cause any panic, give the wrong impression, or even be a distraction to all of the wonderful works the Lord has been doing in our lives. But, the more I thought about it, the more I felt the Lord leading me to share so much (as He has often led before) because it's real. Well, it's real at that particular moment anyway. In having the sweet opportunity to hear your heart through your emails over the last several months, I see and understand that there are moments in which we all find ourselves stumbling into a pit of broken dreams, broken desires, broken promises from others, broken peace.... and many of you have given a particular kind of "praise" to me in how "I" have handled what "you" don't think that you could. And it was in that spirit that I wanted you to see that there is nothing special about me, necessarily, but instead something great about my God. I hit breaking points too. I have the moments of wanting to pull the cover over my head and pretend as though the world would stand still for me until I felt like getting up. And I felt the Lord's hand guiding me to share with you that I am quite normal - good days and bad days alike - when it comes to feelings, reactions, and temptations to give up or give in. Letting you see that, hopefully, gives you a glimpse of all the facets of this journey. If I only shared with you the moments of "monumental faith" or if all you saw from me was an attitude of complete peace all of the time, then I fear it would paint an unrealistic or unattainable picture. Since I know the blessing and the honor I get that you would read anything I had to say, I feel a sort of responsibility to let you in on a little bit of everything. And it's in the moments of brokenness that you can be reminded that I'm only as strong as my own weakest link. We all are. And it's important to me that you see that, because if you are walking down your own journey of faith, and have moments of weakness or frustration, I would never want you to compare or feel inadequate, thinking that your discouragement means you don't fully trust the Lord or something along those lines. My faith in God's protection and promise over mine, Adam's and especially Ethan's lives have not wavered. I trust Him completely. But there are times in which I do turn my eyes away from Jesus standing there in the water, and I look back at the boat (reference to the story in the Bible of Peter walking on the water to Jesus)... Moments in when I take my eyes off the prize. Imagine you're on a treadmill (or should be :o) that's been turned on and moving on it's own, you have to keep walking to stay on top of it. If you stop walking, well, you'll fall and slide right off. It's the same concept. We stop walking towards Jesus. We slip and fall. But of course it doesn't end there. He pulls us back up again. Anyway, I just wanted to take a minute this morning and remind both you and myself that there is nothing I can do without the power, love and strength of Christ. And I fail to remember that sometimes, and that's just how it goes. So I won't beat myself up in those moments of forgetfulness, only if you promise not to beat yourself up either!

On to the peek-a-boo... it's here. Ethan's first tooth has started to peek it's way through his little gum. And the tooth's neighbor is about to do the same! Poor baby... I know it's uncomfortable for him, but it's so cute to me! Yesterday while we were in Boston, Ethan grabbed my hand to "chew" on and OUCH! There was something quite sharp in that little mouth! Anyway, it's exciting to see this little bottom tooth (well, teeth, since there's another one about to break through, too!) start making their way. And can I just tell you how amazing it is that Ethan HAS NOT had a fever AT ALL as a result of his definite teething?!?! Remember, a fever (of any kind, any time of day) requires an immediate trip to the hospital so they can pump him full of antibiotics and observe him for a minimum of 48 hours. Reason being, his immune system is too weak to fight off infection so any fever has to be treated very seriously... even an assumed teething fever. But anyway, HE'S HAD NO FEVER!! I'm beyond thrilled and relieved by this sweet blessing of answered prayer from the Lord.

As for our Boston trip yesterday, thank you for praying... everything went very well. Ethan is doing very, very well. He didn't need any blood or platelet transfusions and based on some other tests they think that his need for them will start to now decrease.

I also had an unexpected conversation with the doctor. She told me that Ethan's blood has now fully transitioned over to the donor's blood. A strong indication that the new donor cells has fully engrafted... basically, that the transplant "took"! He's still not out of the clear for graft-versus-host-disease, but at least there's no longer a concern of overall graft failure. Ethan was born with the blood type of AB+, unfortunately it was his blood that was so diseased with cancer. Since his cord blood transplant, he is now consistently showing a blood type of O+. I just sat in wonder as I processed what the doctor was telling me. He has new life flowing through his veins. The old has been washed away, and the new is alive and working hard at rebuilding the insides of his little body. The imagery is enough to bring tears to my eyes. Ethan's physical life has been saved by the blood of a donor. And our eternal lives are saved by the blood of Christ. What a beautiful picture it all was for me yesterday and again today as I think about it all over again.

come on in

I thought I'd take some time tonight to open up about a very real sadness that has been in my being for a little while now. I don't want to label it necessarily, other than to say these past days have brought me very close to the brink of the pool of what I assume to be a sort of depression. So close, that I could see my reflection in its water. One would think that this type of reaction would have washed over me in the early weeks and months of Ethan's initial diagnosis, but I refused to let it, and instead chose to stand on the promises I knew in my heart were from the Lord. And each day since, with His grace, peace and mercy, I've been able to walk down this road - not at all by my own strength, but certainly and completely by His.

My resolve has been much weaker as of late. Strange, I know, since one would think that the worst of this trial is (hopefully & prayerfully) behind us.... and Ethan has been graciously and miraculously protected! But this last leg of this particular marathon has been especially difficult for me. As we get a small taste of normal life, I'm reminded daily (well lately, anyway) that our lives are not anywhere near what my anticipation of "normal" would have been this time last year. And, it's been the small things lately that have caused me to crumble. Imagine a deck of cards that were transformed into a magnificent castle-like image - one card at a time, strategically placed and balanced on top of each other until the artist completed his creation. Only to have someone in the audience cough - and the tiny burst of air from that person's congestion - blew in its direction, even if only barely, and yet was enough to cause the cards to fall to the ground.

That would paint the perfect picture to describe how I've been feeling lately.

What do I mean by small things? Well, for example, Adam does a lot of the cooking in our family. Simply because he enjoys doing it. He really does. Throwing a meal together comes very easy to him... and he's very good at it! Well, yesterday I wanted to surprise him and make dinner for us myself. Ethan was napping, so I sorted through my recipes and was excited about finding a dish I knew we'd both like (we're very picky eaters!). I stumbled upon something that I thought would be perfect! I started looking at the list of ingredients and my heart sank. I realized that there were 2 important pieces of the recipe that I didn't have at home. And hot tears of frustration swelled up in my eyes as I realized that there was nothing I could do about it. Ethan can't leave the house - be in public - except for going to the hospital (even there we have to tell other people they can't get in the elevators with us). And no one can babysit him here at our house right now either for the same reasons (risks of infection) and restrictions. So making a simple run to the grocery store was completely out of the question. I felt angry and trapped by this trial in a way I hadn't felt before. And over what! Not being able to cook a meal?! But of course it wasn't just that.... it was the reminder of how limited we are right now.... and how much I dislike it. This is just one of the scenarios that inched me closer and closer to that metaphorical pool of water I mentioned earlier.... There's also the "having to plan" which one of us will attend a party/function or even run an errand - resulting in Adam and I having to live out various parts of our lives outside of the home, separately from each other.... and also without Ethan. That realization hit me particularly hard the night before last. Not being able to do certain things with other people, together, as a family. Anyway, all of this has been weighing me down... As well as just trying to balance the normal mom responsibilities.

The reason I write this is not so that you feel sorry for me, though I understand that it's only natural that you might.... so then, why am I writing it - telling you not to feel sorry for me - but readily admitting that I know you probably will anyway??

I share this with you for two reasons. 1) This blog is the one place that I am 100% me, all of the time. I open up my heart and pour out whatever is in it, because it's my way to release it or commit to it... whatever the "it" might be, because in many cases, I'm typing to you, but praying to the Lord at the same time. And 2) because many of you have shared such beautiful encouragement to me, saying that you've been encouraged by something I've shared here. So I see anything that I experience as a tool in which God can use whether in your life or in mine, or both.... so I feel it only appropriate to share it all.

So now you know where I've been the last several days. And today was no different. In fact, this afternoon I probably sat down on the brink of that pool and let my feet dangle in the water. I saw my reflection again... and I didn't like it. Which sparked the cycle of frustration all over again. I know better than this. I know the goodness of the Lord. I know the many blessings I can count... in fact, there are too many to count. But those things do not resonate within you when you are this close to the painful side of sadness. You have the head knowledge. You know what is happening to your joy, but you're too tired to fight it. The pool looks oddly satisfying. And it's true, I really do see what's been happening lately, as far as the attacks from the Serpent himself. But understanding that hasn't helped.... nothing has.

Until tonight.

Adam came home from work today and found me in what has been a "typical" emotional mood lately. I immediately started crying - yes, I mean the bawling, dry-heaving kind of crying. Side note, I bet you think I must cry all the time. I really don't. Contrary to this blog and my some times extroverted personality - I'm actually a fairly steady individual... but that's neither here nor there... back to what I was saying... The overall frustration of the last 5 or 6 months came pouring out of me in about 5 or 6 minutes. Among the stuff we talked about, he encouraged me to go to church tonight. I was certainly not in the mood to be around anyone else. But for some reason, I got ready and decided to go while he stayed home and got Ethan all set for bed. I snuck into the back pew right as they had started the opening hymn. The songs were nice and I appreciated being out of the house. But I wasn't really seeing any direct hit of something special for me. Our pastor invited a missionary from Spain to get up and give us an update on what he and his family have been doing in their work in Barcelona. His presentation was very nice... and as he was sharing his message, I asked the Lord to give me something... something to help me get back on my feet again. The gentleman was about to sit down when he said, "I have one last thing I want to share with you before I go..." And with ease and assurance he gave us the verse from Galatians chapter 6 verse 9, "And let us not be weary in well doing: for in due season we shall reap, if we faint not." I have literally heard that verse thousands of times. But it wasn't until that moment that it changed me. And the strange thing was that the verse wasn't particularly in line with any specific area of his presentation.

But it was specific to me.

I asked the Lord to give, and He did.

If my verse of promise during Ethan's actual battle with leukemia was/is John 11:4 (...This sickness is not unto death, but for the glory of God, that the Son of God might be glorified thereby). Then Galatians 6:9 is my verse of promise that leaning on His strength in the "well doing" profits much in the end, thus making the prize worth the aches and pains of the trial... even when (as another mother of a child with restrictive and special needs put it so perfectly in an email to me recently) "Sometimes we feel so 'stretched' and we don't feel we are doing anything particularly well, [and] it's kind of a lonely feeling."

Man, did her sentence hit the nail on the head with me! I think her explanation sums it all up perfectly... feeling so stretched AND feeling like I'm not doing any of it particulary well. Anyway, I'm working on giving even that over to Him tonight, but even if I am unable to fully escape this clouded grip tonight, I know His mercies are new every morning. And I know He knows I need them. And as Ethan and I make the drive to Boston again tomorrow, He will be with us as usual... but more than that.... what touched me tonight is.... He's paying attention to me. And sometimes just that reminder alone is the life jacket you need.

And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.

2 Corinthians 12:9