You are currently browsing the monthly archive for January 2008.

… it’s snow. 

Yes, I let my kids eat snow by the bowl-full.

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It makes me the “world’s best mommy” in their eyes.

Well, at least in the eyes of the bigger one.

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The smaller one really could care less for the stuff.

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He just pretends to eat it because, after all, Sissy eats it — so it MUST be fun!  🙂

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She would eat snow all day!

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Whatever floats her boat, I say.  (At least it’s all-natural and sugar-free!)

This has been a week of a lot of losses — not of family members or close friends, but of several acquaintances and friends-0f-friends.   We had a memorial service last Sunday for a man in our community who lost his battle with cancer last week and left behind a grieving family — including two children that were students of mine.  Two adoptive families also lost a parent/spouse unexpectedly in the last week.  One of them was a woman close to my age named Amber — with two kids the same ages as mine (http://cold-water-news.blogspot.com and http://www.lazydranch8.blogspot.com/) My heart is just breaking for these families.  All I can do is pray…

It’s put me in a place of reflecting again on how precious life is.  I forget sometimes.  I go about my days wrapped up in to-do lists and mundane tasks.  I take my amazing husband and beautiful children for granted.  I grumble about the snow.  I get mad at the dog…. 

Shame on me.

Or I get so focused on the “BIG” things (you know, saving the world…) that I don’t fully savor the sweet little moments with my kids… or look for the miracles that are happening all around… or kiss my husband spontaneously enough. 

What a gift each day is!  What an incredible treasure to be alive and with my family today!  It’s good to be reminded of how brief life is… and what a undeserved gift each breath is.   There’s no surety that today isn’t our last — so we should live it as if it was.  I know that I would be doing things a LOT differently if I knew I had a limited amount of time to spend with my family…

Teach me to number my days, Lord.  Teach me to savor the moments and live with gratitude and a sense of wonder…

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I went for a walk alone during Peter’s lunch break… and I was literally breathless by the beauty that surrounded me.  It is SO EASY to become blinded by familiarity.  It’s so easy to forget to look up as I walk.  It’s good to stop and see the world again as if through new eyes.  I couldn’t believe how beautiful it all was.  Mountains I see every day suddenly seemed bigger and grander — and the sky was SO blue… I felt deeply alive and grateful for every breath of cold mountain air. 

That’s how I want to live every day.

In awe…

Breathing deeply

Seeing clearly

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… but I’m READY for spring!

A few of my good blogging friends are reading through the book Red Letters by Tom Davis and posting about it on their blogs.  (Check out Brandi and Missy’s posts.)  I finished reading it a few days ago and would heartily recommend it.  I think Tom Davis is one of those individuals who is not just talking the talk, but also undeniably walking the walk.  He shares from his heart in a way that challenges, convicts and inspires one to action.  I wasn’t able to post at the beginning of the week because of Henry’s appointments at Shriners, but I am planning on jumping in on the discussion next week.  For now I wanted to share something that has been on my heart for months (I’m finally finishing one of the half-written posts I have tucked away, Missy! 🙂 )  It’s something that hit me last fall when I read Tom Davis’s first book Fields of the Fatherless.  And it was a clear theme throughout Red Letters as well, so I was prompted to finish this post and share it. 

It has to do with the word compassion.  Tom touches on the literal meaning of this word in his first book and it prompted me to delve deeper into my own word study.  It’s one of those words you hear thrown around so often that it’s easy to become almost familiar with.  “Compassion… Oh, yes, I know what it means…”  But do we really?  It’s a word and a concept at the very core of Jesus life and as I started looking closer, I realized how much more there is to the word than I originally thought and how central it should be in my life as a believer and follower of Christ. 

There is the obvious similarity in structure (although not necessarily as obvious similarity in meaning) to the word passion.  I realized that even though it seems pretty obvious that passion is the root word of compassion, I wouldn’t have necessarily closely associated these two words.  If someone had asked me (before I started studying it) what the word compassion meant, I would have answered off the top of my head that it meant: “feeling sympathy/empathy or being stirred with feelings of pity or sorrow.”  And if someone had asked me what the word passion meant, I would have said:  “deep emotion, longing, or intense desire” — not necessarily the most eloquent definitions, but that’s what would have come to mind.

I was surprised when I started researching the origins of these words (which is one of the teacher-ish things I like doing — studying the etymology of words.)  Perhaps there are some Latin language majors out there who already know all this, but it was very fascinating to me.  I’ll start with Passion.  Our English word comes from the Latin word “Passio” which literally means “to suffer” and in the dictionary I used (the original Webster’s from 1828 ) it stated that the “highest expression” of this suffering/passion was Christ’s Passion on the cross — His suffering was the culmination of His deep love for mankind.  There was purpose to it, there was passion in it, but it was intense suffering.  There are other meanings as well in the dictionary… many of which you might more readily associate with the word (i.e. zeal; ardor; vehement desire; love) but the root is passio: to suffer

It’s the same Latin word “passio” at the root of our english word compassion.  The prefix “com” is from a Latin prefix “cum” which means “with,” “together,” or “mixed”  (it can also mean “completely or intensely.”)  So the word compassion literally means “suffering together with.”  Literally.  Not just feeling sorry for, or feeling pity toward… but literally mixing our passion; mixing our intense emotions with those who are suffering — by engaging a level of suffering with them.  (I think this could be as simple as really allowing our hearts to break… allowing ourselves to feel the pain — but it also could be actually entering a level of physical suffering with someone.)  This is a hard one because to willingly enter the arena of suffering goes against human nature.  It’s not characteristic and certainly not comfortable to actively pledge our hearts and bodies to the primary thing we as humans recoil from. 

Compassion is a “mixed passion” — compounded of both love and sorrow; it isn’t an easy thing to feel, but it is what we are called to walk in.  And it has to go farther than simply feeling sorrow — the feelings are meant to propel us into actions of love.  They motivate us toward literally mixing our lives with the lives of those we feel compassionately toward. 

As I continued pondering on this, I realized that another aspect of the meaning of compassion is mixing our passion with God’s passion.  I believe His heart still suffers passionately for the oppressed and hurting people all over the world today.  I think His heart is still passionate about the “least of these”… And as I mix my passion (“my vehement desire”) with the Lord’s desire for his precious children, I will begin to walk in a deeper level of true compassion.  My passion is purified as I mix it with His. 

It brings new meaning to the scripture “…take up your cross daily and follow me…” (Luke 9:23).  If Christ’s cross was the ultimate expression of passion.. and we are called to be compassionate people who mix our passion with His, it makes sense that the primary way we walk in compassion is by laying down our lives and following Him.  Taking up our cross isn’t for ourselves!  Following Him isn’t for what we will gain (the rest of this scripture talks about losing our lives to gain them…)  We follow His example of true passion by willingly giving our lives for others.  THIS is the passion Christ walked in and this is the compassion we are to embody.

This is one of the prevailing themes of Red Letters — making the choice to follow our Lord into all the uncomfortable places He walked… laying down our lives like Christ to love (in action) our neighbors all over the world… following His example of ministering to the outcast and oppressed.  It’s a pretty big deal asking God to help us grow in compassion.  It’s more than asking for increased feelings.  It’s asking to lose our lives — in passion for those whose lives are already being lost to disease, injustice, violence and extreme poverty.

*I know this is getting long… But I have to share one more thing:

I also looked up the word compassion in the Hebrew and Greek concordances to see what words were translated from the original Biblical languages into our English version of the Bible.  Most of the words that have been translated to “compassion” mean the same thing in their original language as they do in English — but there was one particular word that stood out to me.  It’s a Hebrew word (racham) that has been translated a few times to the word compassion in the Old Testament, and it has a very unique meaning.  It means literally “the feeling a mother has toward the unborn child in her womb”… “the cherishing and tender love, mercy and pity that she feels toward the baby within.”  Wow.  It gave me such a clear picture of the purity of feelings that come from true compassion.  I remember so clearly the way I felt toward Joanna while I was pregnant… the fierceness of my love and my overwhelming desire for her well-being — unhindered by any of the frustrating emotions that come up now that we have a reciprocal relationship.  The feelings I had toward her before she was born were almost purely unselfish.  My love for her and my desire for her goodwill were not because of anything she was giving me.  They were not a response to her love for me. 

And that is how I am to walk in compassion toward others — not for anything that I can get back — not even because I understand that it is the “right” thing to do, but simply from the same unmerited, unearned love that I had for Jo.  The greatest act of compassionate love was Christ giving His very life — not for anything he would get out of it, but simply because of the great love He had for each and every “unborn child” that ever has and ever will be conceived on this earth.  And that LOVE, that PASSION is the root from which compassion springs.

Henry had his first appointment at Shriners yesterday.  I have mixed feelings about what we found out — although we weren’t given a definitive answer (not that we were expecting one.)  Actually, we had even more questions raised!  We heard many professional opinions and thankfully were pointed in the right direction to continue discovering what is causing his handicap.  We were given a lot of information.  I am obviously going to be paraphrasing in my own words in this post.  My apologies to anyone in the medical profession that might be reading this — I’m sure I don’t have all the terms right!  I’m just sharing from my understanding of what we were told yesterday.

It was a long afternoon.  We ended up being there over three hours.  We saw quite a few different doctors and specialists and they all agreed that it appears there is something besides Cerebral Palsy affecting his arm.  The x-rays came back clean — no dislocation or fractures, but the Ortho Specialist said that we need to see a Pediatric Neurologist to follow up on their concerns that Henry did indeed sustain a Brachial Plexus Injury at birth.  Those of you that have been following our story from the beginning know that we initially thought Henry’s affected left arm was the result of a BPI.  But then, after his doctor’s appointment in Liberia, we were told that the left arm weakness was simply a result of CP.  Peter and I have both suspected that there was something else going on with his arm since we brought him home.  It is really bad.  He has absolutely no use of it.  It hangs from his shoulder like a dead weight and appears to be completely unresponsive.  If indeed he has Cerebral Palsy, it is a very mild case and the extremity of his arm isn’t consistent with the mildness of the CP.

(*Here’s a quick explanation of what a Brachial Plexus Injury is for those that are wondering.  I took the definition from this page of the UBPN website) “The term Brachial Plexus Injury (BPI) refers to an injury to the complex set of nerves that control the muscles of the fingers, hand, arm, and shoulder.   Injuries to the Brachial Plexus can result in full to partial paralysis of one or both arms with a temporary or, when the nerve cannot completely heal, a life time injury. While compromising muscle function and the ability to grasp, extend, and reach with the affected limb, the injury can also affect physical appearance.”

The Orthopedic Specialist told us he has doubts about whether Henry even has CP based on the lack of presenting symptoms.  He said he would almost guarantee that Henry’s arm is the result of a Brachial Plexus Injury (his opinion based on what he sees visually) but that Henry doesn’t appear to have strong symptoms of Hemiplegia (which is the type of CP it would be.)  He was particularly surprised by how intelligent Henry is for his age and said that it is unusual for there to be such an obvious lack of cognitive/developmental delays in a child his age with Hemiplegia.  The other doctors we saw also had questions about whether he is affected by Cerebral Palsy, although one of them did a thorough exaimination and noted increased tone in his left leg and foot (consistent with Left Hemiplegia.)  I understand that a diagnosis is simply an diagnosis.  It doesn’t really mean anything other than letters on paper.  His symptoms aren’t going to change just because we finally narrow it down.  The main reason we want to pursue discovering the root cause is so that we can treat it as effectively as possible with therapy and/or surgery.

Unfortunately (and this is where the mixed feelings come in)… a Brachial Plexus Injury is not actually best case scenario.  Far from it.  If it is a BPI, the nerve damage is most likely severe and permanent.  This means that he will never be able to regain use of his arm/hand.  Therapy will help him learn to use the arm passively (i.e. propping things with it… holding paper down when he writes, etc) but he will never be able to regain any active use because the nerves that control the muscles are irreparably damaged.  Had we been able to bring him home sooner, we may have been able to get him into surgery to try and repair the nerve damage, but he is right at the end of the 12-18 month window of time that surgery is a viable option.  I suppose there is a slight chance that the Neurologist will want to see him right away and will decide that he is still barely within the time-frame of potential success.  Perhaps?

We did have  a very good meeting with the Occupational Therapist at Shriners.  She was so helpful and very concerned about getting his hand straightened out so it will grow as naturally as possible.  I am going to be taking him back to her tomorrow morning so she can create a splint for his hand and so she can show me some more stretching exercises.   She did say after observing him for a while that she would be surprised if he ends up being diagnosed with CP.  She said it seems to her (and she has seen a lot of kids with both conditions) that Henry’s case is classic BPI and that some of his other delays could be caused by how small he is and the birth trauma.  

Golly, there were a lot of different opinions yesterday — I should create an on-line poll to get yours! 

So where do we go from now?  We are going to start PT and OT and wait for his appointment with the Pediatric Neurologist to determine how extensive the nerve damage is in his shoulder/arm and to get a final word on whether he has a brain injury causing CP.  Peter and I suspect that it is both.  We’re pretty sure he does have mild Cerebral Palsy… but we could be wrong.  After all, we are definitely not doctors.  (Even though Peter has a DK complex.  Do you know what a DK is?  I’m sure if any of you are married to a DK you know what I mean!  🙂 )  

It kind of feels like we have come full circle back to square one.  This is exactly where we were last May.  But you know, I am okay with whatever the official diagnosis ends up being, even though I will be sad for his sake if the nerve damage is permanent.  In the end, it doesn’t change anything.  He is still our Henry — no matter which of the abbreviations ends up being written on his medical forms.  He is our son… just like I realized last spring right before we accepted his referral.  And we will do all we can to help him reach his highest potential and overcome his obstacles.

I have to add (before I end this long-winded post!) just how impressed I was with Shriners.  They exist solely to help children who desperately need it.  And they do it with such warmth and care.. and efficiency!!  They are a well-oiled machine!  We were whisked from one department to the next by incredibly friendly and helpful staff.   There was hardly any down time and everyone seemed to know right away who we were and why we were there.   All of the doctors and nurses and radiology staff and receptionists were exceptionally kind.  I told Peter when we walked through the door that I felt like we were entering a Special Place… a Never-Never Land…  There were many, many hurting children throughout the hospital, but there were also ministering angels and kind doctors and wonderful volunteers giving of their time to bring smiles and encouragement to little ones who have struggles that most people won’t ever have to face.  They are truly ministering love and hope to the “least of these” in a special way. 

I’ll certainly keep you up-dated when we hear back from the Neurologist!

Wahoo!  Henry took four steps on his own tonight!  It’s a HUGE milestone for him.  We weren’t expecting it at all.  Not yet.  But he continues to surprise us with his resolve.  

He is obviously still feeling better! 🙂  I’m not quite sure what got into him today — but for some reason he just seemed bound and determined to walk!  All day long he kept pushing himself up and then he would stand alone for a couple of seconds.  Then this evening as I was sitting on the couch at my parent’s filling out the rest of the forms for Shriners, he pulled himself up next to the couch and then let go and took two steps!  On his own!!!!  I couldn’t believe my eyes and I’m glad my mom was there to confirm it.  We made such a big deal about it and he was grinning from ear to ear — quite pleased with himself!  He was so pleased that he pulled himself up and did it again!  (Peter got to watch the second time.)  

I can’t tell you what it does to my heart to watch his determination.  Before we brought Henry home, many people told us that even though it can be difficult at times, it is life-changing to parent a child with special needs and that it is extraordinarily rewarding to observe and assist them as they reach milestones.  We are already finding this to be so true!  Henry has to work hard to reach milestones that come naturally to most children because his body just isn’t able to do what his mind wants it to all the time — but his positive spirit and tenacity in the midst of his struggle just touches me deeply and makes me cheer all the louder for him as he perseveres.  I am as proud of his determination as I am of his steps today!  Even at a year and a half, he is making a big impact on those around him.  He takes away excuses.  He takes away MY excuses!  I can’t say “it’s too hard.”  If my son can learn to walk, I can certainly overcome the obstacles holding me back from walking in my fullest potential.  

Thank you, Henry, for being a reminder to me every day of God’s great faithfulness and His love toward us.  Thank you for teaching me again that who we ARE is so much more important than what we Do…  Thank you for inspiring me to let go of the couch and step out on my own even when it’s hard… Thank you for bringing such intense joy to our family.  You make me laugh harder than I have ever laughed before.  Our lives are fuller because of you.  And even though it is a bit of a cliche — I have to say it.  You complete us.  You bring a piece of the puzzle that our family needed and I will forever be grateful for the twists in the road that brought us together.  Way to go today, son! 

Thankfully Henry woke up feeling better this morning.  His fever broke in the night and he started getting gradually stronger all day.  By this afternoon he was acting a lot more like his usual fiesty self — he hollered indignantly when Joanna grabbed a toy out of his hands, and then he proceeded to tell her “NO!” in a very commanding tone!  (Although it’s funny to hear him talk.  His voice sounds like he has been smoking or something — he is almost hoarse.  It’s a very funny voice for such a little guy.  🙂 ) 

I am relieved he is feeling better… but I am still curious about what they will find on the blood test.  I didn’t start him on the antibiotics yesterday because I wanted to give it one more day.  I am glad I waited because he is feeling better without them and I am feeling better that his body isn’t being depleted of its natural reserves.  Now that he is keeping fluids down I am going to start giving him acidophilus — it should help him continue to fight whatever is going on.  Sometimes I wish that Peter’s dad lived closer — but all the same it is reassuring to be able to call him any hour of the night with medical questions! 

Henry’s appetite seems to be returning as well.  He ate a big bowl of soup for lunch and more for dinner and is keeping everything down.  I am glad he is able to eat again because in the last week he lost all the weight he gained since we brought him home.  He weighs even less now than he did in Liberia.  It hasn’t really concerned me that he is so tiny until this week with him being so sick — he didn’t have any extra to lose.

Thanks for your concern and prayers.  You internet buddies are great friends!

It’s been a long week so far.  Henry is really, really sick.  We took him to the doctor a couple days ago to run some more tests because his Malaria test last week concerned them and they wanted a blood culture.  He has been runnning a fever since Monday and throws up pretty much anything he eats or drinks (always on me, of course!) He’s not sleeping well, he has a terrible barking cough and a slew of other cold/flu symptoms.  I am really anxious to hear back from the Clinic about his tests…  Peter has been gone on another install — so I have been trying to juggle a sick baby and a needy, insecure three-year-old.  Poor baby… I feel so terrible for him.  He is just miserable and I am trying everything I can think of to make him more comfortable.  If his fever continues through the night, I will start him on antibiotics tomorrow.

To top it off: the washing machine isn’t working, so I have puked-on clothes piling up in the corner… and our phone line has officially been declared “unfixable” until spring — so I still have no phone… and then a few days ago, our computer crashed!  Completely.  It’s not good… any time the words “corrupt files” are used, it can’t be good.  I am just hoping that the hard drive is okay because all my photos are on there.  (ALL MY PHOTOS!!  DID YOU GET THAT!  AHHHHH!!)  So with Peter in Cda with both the laptop and his cell phone, I’ve been stuck here in radio silence until my mom drove up this afternoon to give me a hand and she lent me her laptop.  I’m sorry if you tried e-mailing (or calling!) earlier this week.  I told Peter, “No one is going to believe me — no phone and no computer?!?”  But I’m really not making it up!  Sometimes rural life is definitely more of an inconvenience than a blessing.  There are days when I would trade the view and the silence and the mountains behind our house for the ability to run out and buy dinner when I don’t feel like cooking and the assurance of consistent electricity in the winter and a bloomin’ phone connection!  Oh well… I guess we can’t have it all. 

I did get to go out Monday night with a few of my closest friends to celebrate my birthday in Canada while Peter watched the kids.  We live close to a quaint little Canadian ski town nestled in the mountains (think Switzerland) with some great shops, coffee joints, bakeries and restaurants.  The ski hill is fantastic too — some of the best back-country powder in Canada!  I am really looking forward to getting knee-deep in the stuff one of these days!  Ahhh… THAT will be a great post!
But anyway, we went out Monday even though my birthday was back in November… We always appreciate a reason for a girl’s night out and since my birthday kind of got lost in the shuffle when we went to Liberia, it was the perfect excuse!  I actually ended my twenty-seventh year on the plane somewhere over the Atlantic (which was a little confusing — did I turn 27 when the time zone we crossed mid-air was at midnight?… or when my watch passed midnight since that is the time zone in which I was born?? Hmmmm…)  At any rate, Peter and I had a great time in Brussels on my actual birthday — AND I had a great time on my honorary b-day Monday.  Thanks, girls!  Since I can’t share a picture due to my current computer situation, you’ll have to check out my best friend’s post for the visual effect.  🙂

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We’ve been home with Henry for six weeks today.  I don’t even know how to begin describing the last six weeks.  In a word — unbelievable!

Henry has grown so much.  He is starting to stand briefly on his own and walks very well when holding one of our hands for support.  He pulls himself up to standing next to the couch and really enjoys being upright, but can’t quite balance well enought to start walking.  I think his arm really throws his balance off since his shoulder falls forward with the weight of it.  He is very mobile for not being able to walk or crawl though.  He scoots along on his little bottom and gets around quickly!  He is also a pro at rolling to reach his destination.  He tries to crawl fairly often because he seems know it would be the fastest way to get around, but doggone that arm!  He just can’t bear any weight on it, so his attempts fail everytime…. but it doesn’t get him down — he just turns over and sits up and continues scooting along!  Nothing stops this kid!  If he can’t do something the way he sees Joanna doing it, he works at it until he figures out his own method.  I love that about him — he is full of tenacity!  We are learning so much from him. 

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He is so playful and quite vocal!  He has SUCH a great laugh… we just lose it when he starts giggling really hard.  He is ALL boy and loves loud, fast games.  He also loves pushing buttons!  He is talking like crazy — his favorite words these days are “NO!” (pretty typical for seventeen months)  and “uh-oh” (usually said after he has thrown something off his highchair that he expects Mama to pick up!)  He is actually talking really well for his age — ahead of average even.  He uses words to communicate what he needs or wants — I think this helps him relate to people on his cognitive level since it’s easy to forget how old he is due to his small size.  He seems to be right on target developmentally as far as we can tell — the Cerebral Palsy seems to just affect him physically. 

Thankfully he is bonding really well.  He seems to be very secure and has started throwing fits in the last few weeks when he doesn’t get his way — a good sign because it means he is feeling safe enough to start testing us.  He has a typical sibling relationship with his sister… he likes playing with her, but also enjoys provoking her (as she does him!)  He actually bit her the other day!  It was well-provoked, but I had to let him know that he can’t bite Sissy.  Oh, the joys of having another kid in the house!!  🙂   He is eating well (hardly any more gagging) and feeds himself like a pro.  We’ve discovered that he LOVES pickles of all things!!  He actually gobbles up almost everything we give him… with the exception of butternut squash (which is unfortunate because the rest of us love it!)  He gave me the funniest look when he first tried it — like, “Mom! Are you trying to KILL me???”  Ha!  🙂 

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But most of all — he is such a delight. Just look at that sparkle in his eyes!  There never was a sweeter boy.  He’s soooo affectionate and demonstrative with his love.  He is constantly giving “kisses” and recently we taught him how to blow them — which he does with great relish!  He knows just how to wrap people around his little finger!  🙂 

On the medical front: We have an appointment scheduled at Shriners Hospital in Spokane next Monday.   We are SO looking forward to this appointment because we have a very long list of questions for the doctor.  So far his medical appointments have been standard tests and health evaluations… we haven’t had his Cerebral Palsy analyzed and I am really curious to hear what a specialist has to say.  I am also ready to get started with “official” PT — I think he will be able to regain a lot of the use of his arm, but I just don’t know how to go about the therapy on my own.  Thank God for the medical resources we have available! 

I figured out how to let the kids “take a bath together” without the risks of spreading anything (the verdict is still out on some of the Henry’s tests… hopefully we’ll hear the results soon.)  This way they can play together and I get peace of mind! (Granted the older one is a little too big for a sink bath… but she begged to get in!)  (Oh, and yes, in case Henry does have Giardia, I bleached the sink afterward! 🙂 )

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A little about me…

Wife. Mother. Friend. Daughter. Sister. Aunt. Student. Adventure-lover. Photo-taker. Book-reader. Organic gardener. Granola-maker. Green smoothie drinker. Snowboarder. Soccer-player. Aspiring rock-climber. Sometime health nut. Passionate about justice and mercy. Adoption advocate. Business owner and jewelry designer. Wild at heart. Crazy-blessed to live out in the country with my awesome family.

Photography Website:

Contact Me:

sunfreckled@gmail.com
"I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do the something I can do." {Helen Keller}

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