I still would have chosen you

I actually have a post in progress (shocking I know), but in the meantime I wanted to share this!

From the heart of a parent of a child with special needs.
I STILL WOULD HAVE CHOSEN YOU
By Terri Banish

If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you.

If God had told me, "This soul would one day need extra care and needs", I still would have chosen you.

If He had told me, "This soul may make your heart bleed", I still would have chosen you.

If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you.

If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you.

If He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you.

If He had told me, "All that you know to be normal would drastically change", I still would have chosen you.

Of course, even though I would have chosen you, I know it was God who chose me for you

in progress

In some ways, Noah and I live parallel lives. Ha! Ok, maybe not parallel. But with so much focus in our family on Noah's progress and development, I'm realizing and accepting that I'm more of a work in progress than my sweet little bear.

Spring was busy.

Everything has sort of come to a head in the past few weeks, and I've found myself pretty overwhelmed with, well, just life I guess. First off, Noah has had LOTS of therapy, twice a week, and will be evaluated by an OT tomorrow so we can start some occupational therapy as well. But its not the scheduled therapy that's been so exhausting, it's the all day, everyday, forcing him to sign for anything he desires. But I am happy to report... he's made awesome progress! By awesome, I have to say it is definitely a relative term... he is signing "more" and "open", but he is still grabbing my hands to make the signs and is too stubborn to sign them himself. One of his speech therapists Bobbi insists that he is smart enough, and totally knows what to do, but he is remaining in control of the situation by not signing himself and that I just need to be patient and he WILL sign by himself. It is frustrating because I know what he wants, so I will touch his elbows to make him do the sign, but he will just overgeneralize and sign "more" for everything. Or, he will just throw up his hands and run off because he's mad that we're forcing him to do the correct sign. But just the fact that he's trying the sign is huge.

But I can't help but think, okay, now let's move forward, more signs, more babbling... it is difficult to wait and know that he will do it on Noah's time. He needs a little pushing, but for the most part I am trying to remember that when he's ready, and I'm patient and consistent enough, he'll communicate. Some of Noah's team is trying to diagnose him with Sensory Processing Disorder. I'd go in to more detail of this proposed diagnosis, but

He's also making lots of eye contact with not just me, but others too. He is learning to play appropriately with blocks, Mr. Potato Head, and chasing games with Ella. Progress is slow, but it is still progress. I'm learning to rejoice at every success, no matter how small. I forget how behind his development is until we are around other kids his age. I used to compare him to Ella A LOT and what she did at what age, but I quickly realized how unfair and unrealistic that is, for so many reasons. Beckie recently reminded me that Noah is exactly the way God wants him, and he is perfect in every way. I put this quote on the fridge. So much truth, and such a great reminder for me.

Noah is getting ear tubes placed in both ears at the end of the month. At first I didn't think much of the procedure, my attitude was more like, well, he has fluid in there, I guess we should get tubes to drain it! Surprisingly he hasn't had any ear infections, ever, but I thought if Dr. P thinks he needs them, of course we'll get them. But I've since heard numerous stories about kids who weren't talking, even at 3+ years old, and just days after having their ear tubes placed they were babbling more, and then talking up a storm! I am praying this will be the case for Noah; praising God for giving him perfect ears to hear and tongue to speak. I don't want to get my hopes up too high, but why not. What I would give to hear Noah say words correctly! To say them at all, really. He is also getting his g-tube site stitched up during his ear tube surgery, not a big deal but it will be so nice to see his sweet belly without that yucky granuloma (scar tissue)!

I'm going through some personal battles lately too, if you wouldn't mind praying for that I would be SO grateful. Starting this week I am only going to work one day a week (because of Noah's surgery and therapy at the end of the month, I am taking an official leave and thus will automatically pass the quarterly hours audit). I am more than looking forward to having more time with my kids, and really being able to focus on my family, being more organized, exercising more, cooking better meals, and being a better wife. I love that with Starbucks, I'm able to only work 20 hours a week and maintain my benefits. But because of Kyle's work, my schedule is all over the place, and I think that's difficult on the kids. Plus, I'm exhausted. Waking up at 3:30 one day, coming home at 10:30 the next, I'm just finding that its unpredictable for the kids, hard to maintain a schedule, and if I don't nap I am not very pleasant to be around! SO not fair to Kyle. Maybe just because I'm too old for this schedule; I used to be able to do it no problem. I did, afterall, turn 28 this year! WHAT!

Financially, we are able to make it work... it will be tight but we can make it work... but our benefits are priceless. It will be interesting to see how everything goes in the next couple of months (I will have to return to 20 hours/week at the end of September). I am praying about maintaining this schedule and finding alternate insurance options. But we will see. I may just go crazy being home this much!

I also had a "falling out" (I hate that phrase, but what else do you call it?) with someone very close to me, that I have been deeply saddened by and have been trying to work through the complicated emotions that have accompanied the loss of relationship. I am surprised at how deeply its affected me. I feel like its affected other relationships in my life, and I feel even more awful about that. I haven't been a good friend to some other very important people in my life.

I think, to sum it up, I just feel like a mess. I know that God is working on me, stretching me, teaching me... in some ways I feel like I have grown so much as a person and learned so much in this short life of mine that I am strong, I can handle things with control, poise, confidence... but in the past few weeks I'm remembering and accepting that I am SO broken. Beyond broken. I am such a work in progress, and I will never be done growing, maturing, falling down and leaning on the cross to get back on my feet. I want to appear like I've got it all together. I think in a way, we all do. But when you can admit that you don't, there is freedom. Knowing that there is no possible way for me to be every little thing I want to be. And then being okay with who I am, who God has created me to be. That is enough, because His grace is sufficient for any amount that I fall short. If we're close to perfect or far far away from it. It JUST. DOESN'T. MATTER. It's been a very beautiful reminder of my reliance on the Lord.

For the past couple weeks, I have said this to myself over and over throughout the day when I have felt like a dork, or just weak, or like a failed friend, mom, wife, whatever.

His mercies are new every morning. (Somewhere in Lamentations)

No matter what happened the day before, or how I've failed, or said something I shouldn't have, or didn't react in a Christ-like way, or felt insecure about something, or didn't react in the best way to something the kids did or didn't do,

His mercies are new every morning.

It's such a refreshing reminder. Between this, and Psalm 23.

He makes me lie down in green pastures; He leads me beside quiet waters.

My refuge...

~

Oh, did I mention we put the TV in the garage for the summer!? Ahhh! It has been fabulous. I really think this has contributed positively to Noah's strides in speech. I don't know how long it will last (maybe we can bring it in for a friday night movie night, then I have a feeling that will become an every other night movie night thing, etc)! Ha.

Paintin'
Running between appts (Love Noah's face in this one!)
Wish she would smile normal for a picture! She's awesome.
Smoochin'
Trying to figure out if she is real...
Ticklin'
Toy Story 3! This girl is hilarious.
Magnum
Wrastling during appointments

Uncompensated Care at Seattle Children's Hospital: Noah's Story

Make sure you turn off the music at the bottom of the page so you can hear the video!

Here is the video that Children's made to raise money for Uncompensated Care... very blessed to be a part of this by telling Noah's story! Annnnnnnd pretty sure the camera adds 30lbs? Hahahaha totally kidding! Not about me!

all done

Gettin' lots of pressure from Noah's "Prayer Aunties" in Southern CA to update the blog, so I better get on it! And I don't have pictures on this computer to upload from his birthday and this last month, but I will be sure to upload some this next week. Pinky promise!

What a month its been!

January started with the kids and I going to an evalulation in Speech and Language at Children's. With Noah missing a few communication milestones, plus him not saying words, we thought right around his 2nd birthday would be good timing.

Thankfully Ella was able to go down to the sibling playroom during the 1 hr. and 45 minute appointment, that place is a God-send! Tell me why we haven't taken advantage of this these past two years?! She loved it, got oodles of attention from a bunch of volunteers, and got to paint for two hours! She was in heaven. So it was just Noah and I in the little tiny room for his evaluation.

Basically she said that Noah has lots of holes in his communication and language development. He does some things, but doesn't do others. Which we knew. For example, if you ask Noah where his nose is, or your nose, he won't tell you. Not because he's confused and can't figure it out, he is just completely uninterested. During the evaluation, she asked me lots of questions and then would ask Noah to do a task, and if he didn't do it correctly or respond correctly, she would put a big fat zero on the little scorecard she had. Which, don't get me wrong. I understand they have to have some point of objective scoring to evaluate these kids. But I was shocked when she told me that, according to this nifty little scorecard, Noah falls in the 1% for his speech and language development. WHHHHHUUUUUUAAAAAAT!? She admitted though that she didn't think this was the most accurate representation of Noah, considering there are holes, he is able to do other things in the S&L realm that aren't necessarily tested.

She also said:

• He doesn't have the attention span to figure out or care what you want him to do, or how you want him to interact
• Kids with facial abnormalities (including LMs) are usually able to talk, it just doesn't come out correctly because of the structural differences (Noah's tongue is huge and has big cysts in his cheeks and mouth, so, words will probably come out different. We expect this), or a lot of LM kids use sign language (Noah has never been interested, we have tried since he was 9 months old). Basically she was saying that by now he should have figured out some way to communicate better than crying or whining.
• She expects Noah to do very well with speech therapy and possibly some OT.
• At this point we are not talking DISORDER, just delay. Well, duh. I was annoyed she even said this, but I guess they have to. I just hate the labels that the medical community so easily seems to place on these kiddos.

At first I kinda took this information with a grain of salt, didn't think much of it but was still pretty bummed about the whole 1% thing. Then as I started driving home I just got really emotional about it all. I explained it to my mom like feeling I was just at the foot of another big mountain that we had to climb! Just bummed out, overwhelmed, not knowing what to expect, and just sad that we don't communicate better with Noah. We communicate with him in so many other ways that aren't specific words or signs. He is the most active, loving little boy.

monday.

Then a week later we had a second evaluation in Wenatchee, at the Achieve Center where he would be receiving his therapy. So different from the eval at Children's! The speech pathologist was warm, but professional, and for her evaluation she asked questions and just took notes on a yellow legal pad. No scorecards. She just said that her therapy is all play-based, and when Noah too quickly loses interest in something or his short-attention span takes over, she said she is like a circus act trying to get the kids to stay focused longer... but she does what she's gotta do! She said it may take time, but she is not worried about Noah not getting to where he needs to be. She said that the rules will change at home for the expectations that we will have of Noah, hand-over-hand signing, etc. She said he will get frustrated when we don't give him what he needs or wants just by crying. We just thought Noah couldn't do it. But according to her, he can, and he will learn to communicate even if we have to force him! Love her!

These are our exact feelings! We know Noah is okay, we just need to give him a little push. God has made us all so different, why should we all learn to do things at the same time and communicate in the same way? I left feeling optimistic, and thankful for a God bigger than all the therapists in the world!

That night, I was getting Noah out of his high chair and signing ALL DONE, then putting my hands over his and signing it, and saying it with lots of inflection in my voice and in a screaching high pitch! Noah was laughing and smiling, then he kinda stopped and looked like he was concentrating, about to say something. His hands came out, he signed "all done" and out of his mouth came a very muffled but obvious "ALL DONE!" I was in tears! He's bilingual! :)

God knew exactly what we needed and when we needed it. It was almost like he was saying, "trust me, I know what I'm doing... I will never leave Noah". This is HUGE!

tuesday.

We woke up, ate breakfast, and as I was changing Noah out of his jammies, I unzipped them to find NO G-TUBE and the hole in Noah's stomach completely healed shut! Whhhhaaaaat!? I scrambled to find his tube, found it in the foot of his jammies... but realized there was no way I was going to be able to get in a new tube. His tube has come out a few times before, and usually it is just a scramble up to his changing table to get a new one put in place so the hole doesn't close (only takes about 45 minutes, our bodies are seriously amazing). But this time, it had come out at some point during the night with plenty of time to close up without anyone even noticing.

We were planning on removing it at some point in February, but wanted to wait until his appt. on Feb. 2nd to make sure we weren't doing surgery this spring (that's why we left it in this long in the first place, to help hydrate after surgery so he doesn't have to be in the hospital as long with IVs). But, today was the day. His tube was out, his belly so flat. He had that big ole thing in since he was 4 months old. It sustained his life, we are so grateful that God has given man the ability to do these medical miracles, but were ecastic to see our little boy's belly lookin' so flat! Children's said that as long as it doesn't leak, there's no reason to have it stitched up, the body should heal the hole just fine. We haven't really seen any leaking yet, but he still has a nasty granuloma coming out of it that can just be burned off with silver nitrate sticks. Small fix. So awesome!

thursday.

Noah's 2nd birthday! Happy Birthday, Noah! We spent some of the day in the clinic because Ella has pink eye (which she said is cool to have because it has a cool name), then celebrated with lunch at Applebees (We're pretty fancy folk). That night, we went to a Sanctity of Life Celebration for Life Choices of Wenatchee (Pro-life Pregnancy Care clinic here in town), and were able to tell a little bit of Noah's story. It was an awesome way to celebrate his birthday!

We are so blessed to see God's hand at work in this boy's life! I can't believe God chose me to raise Noah. It's pretty overwhelming to learn about God's character through these trials in my life as He refines my character... it just helps me to realize how much He loves me and my son... He still is the God of miracles.

"Then one of them, when he saw he was healed, turned back, praising God with a loud voice..." saying ALL DONE!... then "He fell with his face to the ground at Jesus' feet and thanked him". Or, his mama did. :) Luke 17:15

Thanks for checking in on our sweet little man!

WHOA!

You know its been too long since you've blogged when you FORGET YOUR PASSWORD TO LOG IN TO BLOGSPOT!

If there is a good excuse for this (I'm sure I can come up with one!), its that we have had a GREAT fall. Medically, we have almost NOTHING to report on Noah (except for the fact that he has started pulling his g-tube out of his stomach and playing with/sucking on it, awesome). WHICH IS GOOD! God is continuing to heal him, and has kept him healthy. He isn't even snoring at night. I know I have totally taken this time of health and tranquility for granted. But I still praise God every day for how he continues blessed us.

Ella on the other hand has had somewhat of a rough fall. She has been sick since the beginning of October. After two rounds of ineffective antibiotics, she is finally on a higher dose of Augmentin that should kill whatever nasty bacterial infection has made home in her chest. Her lungs have remained clear throughout the whole battle, it has just revealed itself in the nastiest cough you've ever heard on such a sweet little girl! We're loading up on all sorts of probiotics, Vit D, etc. in hopes of helping her body recover from all these dang antibiotics. Please pray for her! She has been so patient and tough throughout it all, but I can tell it has really put stress on her body. It's hard not to get frustrated with her when she's so whiny, but I'm trying to give her a little grace knowing she just isn't herself. Let's pray this round of antibiotics does the trick and we can start the new year fresh and healthy!

Like I said, Noah is doing awesome! Children's marketing and guilds departments have asked Noah to participate in several different projects for them this fall, which has blessed our family! After the Covey Run Ambassador, Noah was asked to be a featured patient for the Seattle Festival of Trees, which means they have 20 Christmas Trees that are decorated by designers and put on display for purchase or auction at the Fairmount Olympic Hotel in downtown Seattle. Each tree is assigned a patient, and Noah's picture and story was on display next to his tree. It was a beautiful event that we were able to be a part of for the initial tree lighting in November; they even put us up in a room for the night to enjoy it all! You can see his little story that was next to his tree here (scroll down a ways and you'll see him).

Then they asked if they could use Noah's story on their "holiday mailing", which is one of those fundraising letters you get in the mail asking for support for different non-profit organizations. With this project, they sent a professional photographer and one of Children's marketing peeps out to little ole Wenatchee to take pictures of our family! We were a little bummed because Noah was pretty grumpy for the shoot, but they did manage to get a few good ones!
Since then they have asked us to use Noah for Guild Newsletters, and most recently have asked to do another photo shoot with his doctors for ads that will run in the Seattle Times, Wall Street Journal, Puget Sound Business Journal, and local parenting magazines. Noah's a little celebrity in the pediatric medical field here in the PNW! :)

After while I started to get hesitant to keep saying yes when they'd ask to use his story. We are honored of course, and think its pretty cool they want to feature Noah, but there are just soooo many families out there, it seems like they could spread it around to make other families and kids feel special? But then, I guess I've come to the conclusion that Noah's story is pretty stinkin' special, and I know that... it touches people. He looks different. And I think a lot of sick kids look pretty "normal". But when they see someone with a special neck and face like Noah, it pulls at their heartstrings and they want to know more. So if this gets people to give to Children's hospital, that's a good thing. And most importantly, if somehow God can use this for His glory, which I believe He is, then Noah's story must be told. THIS is a modern-day miracle.

I thought I already blogged on this, but I went back through the archives and couldn't find anything so I must've not?! I just want to mention that we are a little bit concerned about Noah's development. I think I've hesitated to blog about this because we don't really know for sure if its something to worry about. But here's the skinny.

We expect that Noah's speech will be delayed, and that when he does start learning to talk, he may have some problems because of all the trauma in his mouth. Plus, that tongue is just a monster! Having a big tongue would definitely make it hard to talk. Try it. Hahahaha. It is, right!?

But we are noticing that there are some other delays. And we don't know how much of it is just because of everything he's been through; and that the focus for Noah has been survival and getting through these first couple years. It seems like in the past month things have been better, but he just has trouble listening, understanding directions, etc. And believe me, it's beyond normal almost-two-year-old behavior. :) I know boys are soooo much different from girls, and Ella has always been very exceptionally smart and hits every milestone early. So I have been very careful not to compare him to her, or other kids his age. We are having him evaluated in January in the speech department and OT department for some of this stuff. I am a little nervous about the OT stuff, but I know that if we can catch some of this stuff early, he should catch up eventually. It is just my prayer that God can lift whatever is hindering Noah from developing correctly, if there is ANYTHING. Just trying to cover my kids in prayer. Nothing wrong with that!

And I don't think I'm worrying about something that's not there. We know for sure Noah is a little behind, we're just trying to figure out if its something we need to be worried about and work on, or if its just that he's getting a little bit later start. My faith in Christ says that he is getting a late start, and he will catch up soon. But we would definitely appreciate prayer in this specific area.

I know my thoughts are frazzled; just trying to explain our thought processes over the past few months over this issue!

Looking forward to Kyle's family coming next week for Christmas! Will write more soon. It's LATE!

Swim Lessons

Ella took swim lessons this summer and absolutely loved it! It was so fun to watch her, she was truly in her element. At different times when her teacher (who was probably 19 or 20) would ask her to do something out of her comfort zone, Elle told her on a few different occasions, "Don't you know I'm only three and a HALF!?"

My little fish.

Patiently waiting... notice her Tuco also had swim lessons that day!
Sit up straight! :)

Other sweet little girl who had just turned three, so of course Ella thought she was her boss.

Crackin' jokes
This is what Ella would do while she was waiting for the other kids to take their turns...

"bobs" were not her favorite... but by the end of the sessions she couldn't get enough of them!

picnics and cyst draining

Just a few shots we took while picnic-ing (is that a word?) down at the river a few weeks ago. Such a fun day! I love this spot along the loop trail between 5th and 9th. Perfect little private spot with lots of grass and a great little beach.

And before I forget, I'll mention that we're heading to Children's this weekend for them to try and drain two of Noah's cysts on Monday-- the two new ones on each side of his cheek up by his ears. They've gotten pretty tight and we think they're causing Noah some discomfort. I'm not really worried about it, but I think that the likelihood of the cysts filling back up again is pretty high.

We've drained two different times before in Noah's life; one at two days old and one at two weeks old. (Or was it three times? I'm thinking we may have drained around six months old also... correct me if I'm wrong, babe?) Anyway, one of those cysts emptied and never filled up again! We are choosing to drain because we know that at least Noah will feel some relief. Even if its temporary. I'm starting to think that Noah's pretty consistently uncomfortable in his face. I know its all he's ever known, and even though the proportion of his hygroma to the size of his head and the strength of his neck has improved, the constant itching and irritation has got to get old! It just seems like he gets grumpy sometimes for no reason... most of the time he's a happy boy... but other times he just seems so irritated. I think its more than just typical 21 month old behavior; its almost like he feels under-the-weather. Who can blame him.

I was reminded this last week, that our continued focus should be expecting a miracle, not just waiting for healing to happen... we must rest on the truth in the Word and have confidence that Noah WILL be healed. Lord, help us to keep this momentum and focus on you, no matter how long it takes.
I'm gon' get you!
Rolling down the hill

He's become such a daddy's boy lately! It warms my heart, but I'll admit it makes me a little jealous! :)

Is this a good skipping rock, daddy?Looking for some sweet sticks
Noah do it?




Don't touch me with those hands!

The Lighthouse

Somehow, our family has become more of a one-sunday-a-month-church-attending-kinda-family. For one reason or another, we have not been able, or in our exhausted state, usually make some sort of excuse not to go. Shoot, explaining our exhausted state, in itself, is a great excuse! I'm outta control! :) Last weekend we made it (well five minutes late, and I only got to hear half of the service from entertaining Ella and running her back and forth from the preschool... but, we were there!) It was a pretty significant weekend. I have been so blessed by our pastor.

I won't explain his whole sermon, but I will say that I left energized and moved, with an overwhelming desire to never have a mediocre Christian life... not that you have to be radical to experience Christ's love and be used by him. But he is a pretty radical dude. I know His grace is enough. I know. But am I really following Him? Am I living the way he lived? No. Not even close.

Weird things happened this Sunday. I felt the Holy Spirit tugging at my heart so hard that for whatever reason, I felt like we had to go to the Lighthouse (homeless ministry) that day (our pastor briefly talked about it during his message). I've heard some CRAZY healing goes on here, and that Christ is so alive there.

So the kids and I headed down there after we had a bite to eat. Maybe not my best parenting decision ever... its in a rough part of town. But I was convicted enough and trusted that we were under God's veil of protection, and on a small, child-appropriate scale, I want them to be exposed to loving people no matter their circumstances. Truly loving someone sacrificially when they deserve it the least. Not that the people here are any less deserving than you and I.

I couldn't get there fast enough, I felt so excited driving there. It was something I've never experienced before...

And even stranger, I didn't even know why I was going. I knew I wanted prayer for Noah. I knew that I wanted to help, in some small way, with this awesome "Jesus Place". I'm pretty sure this is where Christ would be hanging out if he lived in Wenatchee.

I definitely wasn't prepared for what we experienced there. Dressed in church clothes, my clean, well-fed and well-groomed (who am I kidding, I think Ella's hair was kinda matted and Noah had mustard on his shirt) children and I pulled up in our SUV, but made sure to park far down the street. The first thing we were asked was, "Are you hungry? Do you need a meal?"

I loved it. It didn't matter what we were dressed like or where we came from. If I was hungry, they would feed me.

I pulled Ella close to me with Noah in my arms. I started crying, was so embarrassed, and then just broke down and said I needed prayer for Noah. The cook got the attention of a young man getting ready for a worship service in the dining hall, and yelled ALL THE WAY OVER THE BIG ROOM that we needed prayer.

"Now?" He asked.

Now.

I didn't want to be rude or demanding or selfish. People there had much greater needs than I. But admittedly, in my desperation, I needed it now.

So he gathered a few people, and we went in to a pantry. They pushed food and step stools aside, and we crammed in to the small room. They laid hands on Noah, spoke in tongues, cried out to Jesus. At one point I opened my eyes, and Ella was not scared. She was in awe.

Not that this is the first time I've prayed over Noah or had him prayed over. And I'm not sure why I'm sharing this experience on blogger. I guess I don't want to forget it. I don't want to forget the desperation I felt in my heart that day for Noah to be healed. I know the power of healing is a controversial issue, but I believe that some people have the gift of healing. After we finished praying, we asked if we could bring old Starbucks pastries every few days, of course they accepted. I wanted to offer something. It was all I could think of. They asked us to come back; I knew we would be back. But again, I wasn't sure specifically what for.

Noah's had some new cyst growth on both sides of his face in the last month, one of which at one point was connected to his vascular system (you can tell because it has old purple blood in it)... which can be more scary. While discussing my Lighthouse trip with my mom. We both talked about how we feel like we had so much conviction and pulled so close to the Lord in the scariest of times with Noah. The end of my pregnancy and the first year of Noah's life, I had no choice but to cling to Him. He was my only light at the end of a very scary, unpredictable, exhausting tunnel. And since then, the sense of urgency has died off and we have turned on the overdrive. Which, part of it is survival. I do believe Noah will be healed. But day after day after day of checking to see if its shrunk since the previous day gets disappointing. We have seen a lot of healing. As I've said a million times before, the fact that Noah can eat is a miracle.

I'm just sick of it. I know, I know... my suffering is so small compared to what so many go through... but it is still hard. Not trying to have a poor me moment at ALL. Just being honest. Day to day our lives have gotten so incredibly easy compared to last year especially. We almost forget that Noah deals with a giant mass on his face and neck. But sometimes, my heart just breaks for him and fears for his future. What pain, growth, embarrassment, shame, confusion (why me), insecurity, etc. will he go through? I pray it will bring him to the cross. I know God can use it for His glory.

As a mom, of course you only want the best for your children... but I find myself asking, WHY do I want God to take this away from Noah? For an easier life? Well... yes... I know it causes him discomfort and pain from time to time. He is constantly itching it, and in the winter with his dry skin when he itches it, it scratches easily. His poor face is all scratched up. But Lord, we praise you... Noah can eat and breathe. And even if he still needed medical assistance for these, we would still praise you. We don't doubt your love or praise you less because of our circumstances.

I want to be a part of what happens at the Lighthouse, but I'm not sure if that's part of God's plan... or in what capacity. I do know that my sweet mom and I are really excited and grateful that Starbucks will let us take old pastries everyday to the soup kitchen. Such a small, insignificant thing.

I'm publishing this post with the risk of exposing my immaturity in Christ.

Oh, how He loves us, oh, how He loves us.

Run for Children's 2010

Pretty sure this is the only running Poppy did... :)

Happy Campers!!

With Maddy & Mom (Maddy born with, basically only half of a heart) from Team Maddy Moomers! Such a sweet family, actually from Royal City (here in Central WA)
Shoot there's Kyle's arm!
And away they go!

His favorite drooling shoulder

Telling our story to the crowd, Noah is a man of few words! He...just wanted to eat the mic.
With Jim Dever from King5's Evening Magazine. Such a nice guy.

What an awesome event with wonderful people. Such a blessing to be part of this!

Another LM mom's words

Do I truly want to grow in Christ more than I want to have a comfortable life? Hebrews 5:8 says that Christ learned obedience from what he suffered. Is it more important to me to learn obedience through this suffering God has allowed our family to endure? If it could all go away tomorrow, would I miss this opportunity God has given me to grow? James says to count it all joy whenever we face various trials, knowing that the testing of our faith produces endurance. Do I really want the things that are eternal, or do I prefer the comforts of this world? Am I willing to depend on others? Am I content with sacrificing my independence? Philippians says that Jesus became obedient to the point of death. Do I share the same level of commitment?

-Suzanne Kearney, mom of Timothy, sweet little boy with a LM
Timothy's Journey