The boy who would not be labeled

Unique and defined. By his terms. No one else can figure out the definition. And behind that secretive smile, hides so much more than any one will ever know. Even his mama. He knows they try. He knows they test. He knows they strive to figure out a label. A course of action. A brand. They will not. He strings the beads backwards. He counts the toys in his own rhythm - leaving out numbers and skipping a few. And some how comes up with exactly the answer they were asking for. In a method they will never figure out. He won't show his work. It's all in his head. It's his power. His secret. They will not crack the code. He can not tell them what emotion the little girl is displaying in the picture. He shuts down. But he begins spelling his answers to the questions he knows. He doesn't miss even one letter. They are flabbergasted. They call me with the results. But stammer through parts. Because their livelihood depends on testing and resulting. And they can't result this kid. They throw around words like 'possible autism spectrum' -'yet lacking in so many of the definitive symptoms'. 'Possible behavior issues' 'Quirks' 'Quoting Little Einstein movies in mid conversation?' 'Lacking social skills' 'A security wash cloth?' 'That he calls his winder upper?' 'Pervasive development disorder' And yet they also take on a tone of awe as words come out such as 'Intellectually astounding' 'Phenomenal' 'Academically on track' And so they don't really know what to say. But eventually they do. 'Cause that is their job. Recommendations, books, web sites, specialists. More things to listen to, respect, pick through, and then it all comes down to... What is best for him? What does he really need? Dave laughs. He once again sees the child who is breathing On his own. The boy who has been granted to us as a gift. The boy who will not be figured out is fathered by the man that few could. The boy who doesn't care much to be like any one else has blood flowing through his veins of the man who mocks trends. They smile and wink at each other. And mama just shakes her head. Because she loves them both like crazy. But she may never have them completely figured out. Of course he would say the same about her. This fall there will be a whole new team of educators who will be confused and charmed by one small, yet very influential child. This is going to be fun.

And then there are the days...

When you think your heart may just burst with happiness. When every where you look things are blooming. Even when you look in the mirror. When the sun shines brighter and warmer than it has in months. Feels like years. When everyone is healthy. When cleaning vomit every hour is no longer in your job description... for now. When all of the towels and blankets are finally clean. And folded. And soon to be put away. When everyone sleeps for 12 hours at night. When your fridge and cupboards are stocked to overflowing. Not so much your wallet... but it's okay. When you spend the morning laying in the sun with those favorite strong arms wrapped tightly around you. When you know that more rain will come, but for now you know that God is urging you to just thank him for the sun. When life is just so, so good.

Messy

The messes we make in life are very seldom "tidy". They tend to leave a little residue here and a little bit there... I was thinking about this last night as I tried to get a few indulgent moments of sleep between tending to, comforting, and cleaning up a very sick little Noe. Seven times between the hours of 11 pm and 7 am. When my head hit my pillow around 9:45 pm last night relief washed over me. I had accomplished much over the course of the day, but this mommy was beyond exhausted and bed and sleep were two beautiful words to my worn out mind and body. In a sleep deprived fog somewhere between 2 and 4 am (I lost track around 1:30) I heard him giving in to the ills of his digestive system once again and I admit, I did not want to get out of bed again. I knew that I needed to and I knew that he must be feeling awful! I forced my eyes open and tried to imagine up some kind of energy. As I pulled myself out of bed I remember having a fleeting hope that this time he would have at least vomited on the towel I had laid under his head. Only on the towel. In a nice, tidy, and easy to whisk up and throw into the washing machine, little area. No such luck. Oh, it was on the towel, but also the bumper pad, his special blanket, glow worm, floor... I don't have to go into all of the details. I guess I still do want people to read my blog. As I sat an equally exhausted Noe on the guest bed in his room and began the clean up job - for the 3rd or 4th time - I began to think about life's messes. Mind you, it was a very foggy brain that was contemplating these things, but in those moments of weary tasking some important things were still laid upon my heart. I don't like messes of any kind, but I especially cringe, or try to deny, the more abstract messes in life. They can be messes of my making or messes made at my expense, either way I have struggled for years with dealing with them head on. I have made some progress over the past couple of years, but I still tend to really try to "make" them tidy. And they aren't. They can't be "made" any thing but what they are. Messy. Wrong. Unfair. Accepting that is a tough pill to swallow. I can't make the messes in my life tidy any more than poor little Noe could've controlled the awful sickness that has overtaken his little body. Sometimes life isn't pretty. I did not encompass the love and selflessness of my Savior much at all as I cleaned and comfroted time and again. Fortunately He gave me just enough grace to get up each time, and one of those times I thought about Him as the ultimate mess cleaner. He doesn't complain that we did it again. If it was a mess of our chosing and making he knows that the circumstances resulting from that will certainly bring us to a point of crying out to Him. If, on the other hand, it was a mess that was out of our control and brought us to a point of sobbing disbelief - He is there as the great comfortor and healer. And in those early morning moments I saw very clearly that in as much as I can not make life's messes tidy, there is one, and only one, who knows about all of them and is able to heal. There is this sin thing, and this free will thing - so there will always be messes. If God were to remove the messes or immediately tidy them than he would be taking away those two things. And as of yet, it is not time for that. But there will be a day...

Just wonderin'

Have you ever cried... over the movie Nemo... because you could relate so much to daddy Marlin's over protectiveness of his little buddy with the broken fin? Have you ever had one of your babies on your lap, buried your head in their hair and got instantly choked up? Have you ever had a really bad word mild expletive come to the forefront of your mind when you couldn't open your utensil drawer due to some thing being stuck in it? Have you ever prayed over yard sales? Have you ever intensely craved a food for a week, then ate so much of it you got so sick of it you couldn't stand the sight - and then moved on to something else? Have you ever craved verbal affirmation, then became a speechless silly woman with nothing at all graceful or intelligent to say when some one gave it to you? Do you suffer from forgetfulness that sometimes makes other people feel bad? Like - perhaps sending your 7 year old nephew a birthday card with "Congratulations on turning 6!" all over it? Even though if you would've sat down to think about it instead of rushing through you so would've known...? Do you ever look around at your life and wonder how you ever became so blessed? How all of this is yours? What a whirlwind it has all been? Do you sometimes feel 7 or 8 years younger than you actually are? And then see the grey hair and that new line framing the corner of your smile (even when you aren't smiling) and realize that time is still ticking away. Have you ever gotten an idea in your head and gotten SO super excited about it before you calculated the reality factor into it? And then had your husband do that calculating for you, and realize how right he is...how silly you were for ever thinking it was a possibility, but then having the hardest time letting go? (Possibly having some thing to do with a west coast trip next year...maybe?) Do you ever lose your patience with your kids? Over silly things that ultimately do not matter? And then it ends up being an immature power struggle for both of you? Do you ever have to bake? Like, you can't go on doing any thing else until your warm oven is perfecting some delightfuly domestic dish? Do you ever fantasize about taking your lap top to Panera and just sitting there with your lovely mocha and bread bowl of soup having a few hours of uninterupted time to write? Have you ever had a really bad day and gotten unreasonably hung up on what other people think of you? Assuming other people around you don't have so many more important things going on in their life than to analyze you? I didn't think so. But if you have ever done or thought any of those things than know that you are in good company. Probably. I assume some people probably sometimes do those things. Just making some guesses...

Changes

So many changes coming to our family in the near future. Planning and grinning about some of them, feeling a little bit uncomfortable about others. Because that's how I am. I get used to things. I get comfortable with things. And some things could stay the same forever and I would be so happy. But then I know that to grow things must change. There is an awful lot of excitement in the unknown! I just have to push past the caution and fear. K is going to kindergarten this fall. We finally got word that he will be able to attend the school that we really wanted him in last year. Still so much planning and many meetings to attend. Because you know my K - nothing about him is typical. Paper work, meetings, and special planning must follow him around with each new step we take. :) Kindergartens in our area all just switched to all day. So he will be making the transition from afternoon preschool three days a week, to all day kindergarten 5 days a week. My little boy, Whom I feel so protective of. And yet I know he is so, so ready! Change. Plans underway for Jay to attend a two day per week preschool this fall. Two in school. Some big schedule changes for us. This mama is presently a bit spoiled with just having afternoon preschool to get ready for. Leisurely mornings. Cuddling in our jammies . Late breakfasts. This fall I will need to be up early, and have every one up, fed, and dressed early. Like before 8 early. K has been riding the bus, which gets here around 11:15. Next fall I'm pretty sure I will need to drive him to school. Early. In the midst of transitioning to much less sleep, nursing often, and figuring out the trick to getting four little ones into car seats in the early am. Whew. Change. I can't button any of my pants any more. Change. A new little one. *Grin* Which means less sleep. Juggling four kidos. Learning more multitasking. Transitions. Growing, changing, learning. Change. Yesterday I experienced the sweet reassurance that is hearing that beautiful and strong baby heartbeat. 165 beats per minute. It was wonderful. I never, ever tire of this. I've done this four times, and each time I am blown away and amazed at the process of growing a life inside of me. I hear that "swish-swish-swish" and tears came to my eyes. Change. Tears also poured down K's face. He lost it completely. He is normally so mellow and laid back. I still don't know exactly what it was that upset him so. He knew we would all be going to the hospital for mommy's appointment. He seemed fine with it. Once we were in the parking garage he began getting very nervous. In the waiting room tears began flowing from his darting eyes. He kept saying he wanted to be at home to play his computer, but that is his way. Dave and I saw right through it. He often makes up an excuse for being upset. We knew it was much more than that. Wanting to play his computer is not a K reason to cry. It takes alot for that kids emotions to manifest into tears. Back in the examination room he began screaming, crying, shaking, and just really lost it. Dave had to take him out. Every thing escalated for him when the heart beat doppler was turned on. We were all excited to hear the heart beat, but something about that sound seemed to bother him intensely. All we could think of was something about that sound brought back some bad memories for him, or the frequency was difficult for him. I don't know, but I sure felt badly as I saw how it affected him. I remembered when I was pregnant with Jay I had a heart beat doppler here at home and whenever I would use it K would get upset. He knew we were going to hear the heart beat at my doctor appointment yesterday, so I'm guessing he remembered that it was something that bothered him. Whatever the reason, he certainly let us know that he was not pleased with it. He has been doing that more lately. Changing a bit from his agreeable self to making his thoughts, emotions, opinions, wants very known! In some ways it is so good. Very good to see these typical development milestones showing up in my 6 year old. At the same time it is taking me by surprise and causing me to change some expectations as well as some of the ways I deal with K. Change. A two year old who is abandoning any physical and personality qualities that can be associated with the word "baby". Talking to me in full sentences. Wanting to use the potty (Now if only he could figure out to sit on the potty before he goes...). Ready to leave the crib behind. Change. Growing, changing boys who's appetites have all increased like crazy. Revamping the grocery budget. For so long our grocery budget was able to be quite low. K was exclusively tube fed. Our insurance paid for his special high calorie formula. Noe nursed for his first year, and Jay didn't eat a whole lot. Now they are ALL eating just about as much as me (not quite though - that's alot to keep up with)! Again, a very, very good thing. Especially where K is concerned. I so well remember how zealously we prayed over each ounce that we could get him to take orally. When we brought him home from the hospital he had these teeny tiny 2 ounce bottles. When he would finish half we would rejoice. The feeding tube was placed when he was 18 months old. I've always had a love hate relationship with that little button in my boy's belly. Love how it helped him to grow and thrive when he was labeled "failure to thrive". Hated that we had to do it when we had prayed, hoped and worked so hard so that it would not be needed. Now we are consulting with doctors to begin making plans to surgically remove it. So, as I said, all good things, but... Change. Changes to the life I have known for so long and become very accustomed to. Changes that will cause us to rely so much more on God. I'm excited. I'm wondering. I'm trying not to worry. I'm feeling challenged. I'm growing.

Wordless Wednesday

My mom.

I was so blessed to have 3 days with her and my dad!

And because I know ya'll really wanted to see the almost 12 week belly... Easter Sunday, 2009

A happy heart

From a full heart.

I am just soaking it all in - enjoying every minute.

My boys with their Iowa grandparents, whom they only get to see about 3 times a year.

Talks with my mom.

She gets me.

I almost miss her already - which is weird and twisted I know.

My dad making paper airplanes with Jay.

K's giggle and attachment to his "Gramma Pat".

The boys excitement over spending the day with both grandmas yesterday.

Coloring eggs.

Good Friday service.

Teaching the boys a little bit about why we are celebrating.

Such beauty.

Trying to treasure every minute until mom and dad have to leave Sunday afternoon.

A different kind of beautiful

In the beginning, when he was only a few months old, I believed what they were telling me. The therapists, the doctors, all of the "good intentioned" medical staff who seemed to pour into our lives after we brought our first baby home. "He needs this therapy, this therapy, and this therapy. In addition to all of the outside therapies you take him to, you must do this list of exercises at home. To have the best shot at a normal life please do A, B, and C for your child." And so, I engaged all of my energies into this "best shot". And I focused on "normal". I admit that for a few years my focus was quite solid. A,B, and C it must be then! Dave saw the energy and where it was focused. He never had the focus I did. His focus was on his boy. His beautiful boy whom God had so generously spared. His boy who could breathe with out the aid of a ventilator. Whose heart beat in normal rhythm. Who was beginning to eat on his own. Finally. He would, ever so gently, try to remind me of these amazing facts. But ultimately he gave me the space I needed to learn the lessons that could only come from God. I had a similar perspective as Dave when we were in the hospital. All those weeks where we earnestly prayed that he would breathe on his own. Where each little victory was a huge milestone. Something changed for me when we brought him home. I became a stay at home mom to a special needs child. No longer were there specially trained nurses by his bedside 24/7. He needed me. He was my world. I had to do every thing possible to help him. Some of the therapies K has received have been stepping stones to many of his most wonderful physical accomplishments. Alot of the energies I invested into him were fine and helpful. When looking back it has been my mindset and particular goals I was hoping for that were less than admirable. Ultimately no part of K's progress can be attributed to any thing other than God's miraculous grace. I am starting - and when I say starting I mean real baby steps ('cause that's how I roll...) - to see the truth. And the beauty. And the gift in the unique. My son, K, will never be like other kids his age. Why is that hard for me? Why even in typing those words, do I get a bit of a lump in my throat. Humanness I suppose. Being drenched in the messages that surround me. Not having guarded myself against something I really am no part of. Not having drenched myself in God's Word. K is amazing. He is brilliant in his own right. There are things that are alot harder for him than most children. He has gone through alot more than most 6 year olds. His brain does not function like most children. He is not most children. He is God's child. He has been given to Dave and I as our child for the present. K will excel greatly at some things. His memory is crazy sharp. He memorizes entire books and DVD's, he brings up things from the past that I hardly even remember. K will struggle greatly with other things. When he underwent 4 hours of neurological psychological testing yesterday he was shown some action pictures and asked what they represent. He shut down. He said he was tired. He got agitated. His vision is extremely poor. And there isn't a whole lot more tweaking that can be done. He also struggles with any thing that is not concrete. He thinks in a very black and white concrete way. When asked to name emotions from pictures he gave a very blank look. He concentrates so hard. He works so hard. He takes a long time to process information that most just take in as they receive it. He needs extra time. He needs extra patience. This is my child. I used to think I had a responsibility to him that included things such as normacly and other kids his age. But do you know what? As much as I still see the value in a few therapies, dr. appointments, and working with him, I see far more value in things like, patience, flexibility, acceptance, appreciation, and recognize the beauty in the unique. My goals are changing. My heart is changing. And I am so glad, because I would miss out on so much if I stayed in the same old normal thought process. I am planning a more informational post that I will be writing soon. To let you all know the purpose behind yesterdays testing, where he is at with eating, school plans, medication, vision, etc. For today, I just wanted to put words to something that has been moving in my heart. Six years ago today we brought our baby home after his 96 day stay in the Neonatal intensive care unit of the hospital. Thank you Lord, for our one of a kind little boy.

What Easter means to me

Hebrew 10

19–21 So, friends, we can now—without hesitation—walk right up to God, into “the Holy Place.” Jesus has cleared the way by the blood of his sacrifice, acting as our priest before God. The “curtain” into God’s presence is his body. 22–25 So let’s do it—full of belief, confident that we’re presentable inside and out. Let’s keep a firm grip on the promises that keep us going. He always keeps his word. Let’s see how inventive we can be in encouraging love and helping out, not avoiding worshiping together as some do but spurring each other on, especially as we see the big Day approaching. Peterson, E. H. (2002). The Message : The Bible in contemporary language (Heb 10:19-25). Colorado Springs, Colo.: NavPress.

Trying to summarize what Easter means to me seems a bit like trying to harness the ocean. What we celebrate at Easter has every thing to do with who I am and the building blocks of the single most important event that my faith is based upon.

So, I will step away from the daunting intimidation that I first faced when I considered writing this. I don't have to try to outline the Christian faith, or wax eloquent in the numerous reasons for Christ's selfless act of dying for our sins. This is simply going to be my heart. Why do I feel deeply moved this time of year? What personalizes it for this one child of God? This year it is because I am humbled and amazed that one such as I can enter into a personal relationship with God himself. I - the girl who struggles with so many things that grieve His heart - have been given a position of honor in His family. I don't have to go through a high priest, or any body, to get to Him. He who is sinless. He who created every thing beautiful and good that we experience. He who loves perfectly and with out condemnation. He. The lover of my soul. The one I will some day see face to face. And all I will be able to do is fall to my face and cry "holy, holy, holy!" This is the one I have the privilege of approaching with no fear. Only great awe and reverence. He cares about every thing in my life. He loves it when I speak with Him. When I pour my heart out to Him, and leave my worries with him. He made this possible through his terrible suffering, and death. An eternity together awaits us because of his resurrection. This is why my heart rejoices, my eyes mist over, and my smile is brighter than usual this time of year. I am reflecting on something that is hard to believe, but I know with out a doubt to be true. So with out hesitation I will approach him. I will talk to him. And I will thank him for making a way for this to happen.

Click here to read some very beautiful posts themed "Because of the Cross, What Easter Means to Me" : http://becomingmethruhim.blogspot.com/2009/04/because-of-cross.html

Numbers

2- weeks left in my first trimester 4 - lbs put on so far 6- weeks till I "get" to start my weekly progesterone shots 20- injections I will receive (Thank you Lord for the little bit o extra padding being added to my hips where those injections will go!) 10- weeks until I find out if I will be the mom to all boys!! 4- number of fits thrown by Noe yesterday. There seems to be a bit of a "passing of the baton" going on here at our house as Jay becomes more obedient and able to be reasoned with. The previously sweet and very mellow two year old of the house is now trying out his independent and stubborn streak. 0- things we absolutely have to get done today. I couldn't be more pleased to have a relaxed Saturday with Dave home! 1- hour that Dave let me sleep this morning after the boys woke up. Heavenly! 3- new food cravings. Humus, baby carrots, and cucumber. 4- loads of clean laundry that needs folded. I'm focusing on the fact that it is ALL clean!! 6- days till my parents get here to spend a long weekend with us!! -Not like I am counting or any thing. :) 3- the pants size that has been evicted from my dresser, packed into a box, and put into the closet. I will not even look at them for at least another year. Will they ever be reinstated? I'm choosing not to care at this point. 2- bloggy friends I may get the opportunity of meeting this spring or summer. Excited would be an understatement! 6- little hands that helped me make a low carb cheesecake for Dave yesterday. 34- degrees this morning when Dave and I took all the boys outside to swing. 10- minutes we lasted outside before just about freezing our toushies off. Spring? Hello? Are you there? Somewhere? 4- days this past week that the boys were cooped up inside all day. 22,825- hits to this blog since I started it a year ago. Really? 223- posts I've written. 1- cup of coffee I've had this past week. Really. I'm cutting back a bit due to some trouble sleeping. 65- milligrams of extra iron added daily, due to being very anemic. 3- people that God has made it extremely clear that I have yet to truly forgive. Ouch. Countless - moments that I have grown and learned this past week.

Boys will be boys...

Learning that boys will be boys. And the humbling process of asking those boys for their forgiveness... Yesterday I had a pile of paperwork to get through - so much to do. They seemed to be playing nicely. Then went up to their room. Only a few more minutes, and the "important" stuff would be done. Then there was the inevitable crying - thumping - fussing. I was not happy. I had so much to do. Why can't I ever get one project done from beginning to end? Why can't I turn my back for a few minutes (okay, maybe longer)? Why must they destroy everything? Because boys will be boys. And mom's of boys must have a special kind of patience. And sometimes that takes alot of practice. And failing. And starting over. I go upstairs to find their curtains pulled down. Rod, hooks, nails, and all... Not, not happy. They are sword fighting with the rods. Noe is crying. There is an unidentified piece of wood on the floor - pulled off from something. Still not sure what. They are boys. They will always be boys. Patience, patience. Yesterday I was not patient. Yesterday I got angry. And I yelled. And I stomped. Real, real mature. A great example - exactly how I want them to act... And then six beautiful eyes stared up at mine. And what I saw there cooled off my anger like ice on a fire. And I crumpled down beside the "swords" And my tears joined Noe's. I had gotten really angry. And it wasn't just about the torn down curtains. Or the danger of the nails on their carpet. Or the pushing that had gone on between Jay and Noe. It also had to do with the fact that spring break has not been much of a break. The weather has not been good. We've been in the house. Not used to trying to keep all three boys occupied all day every day. And no Awana. And no mom's group. And Dave working longer hours. And me - having my own agenda. Trying to do "my stuff" And being interrupted. And seeking my own selfish ways And not understanding. That boys will be boys. And it is a gift. They were cuddled and talked to. Explaining what they should not have done. And what mommy should not have done... Noses were wiped. Mommy's too. Mommy asked for forgiveness- for being so loud. So loud that her throat hurt. The guilt cut like a knife. Deep and shattering. Because I know how it feels - to be on the other side. And I don't want to be like that. And then those little words. Spoken from Jay- "Mommy do you still love me?" And more tears from mommy. Words pushing past the lump in my throat. "Baby, I will always, always love you! No matter what. Sometimes what you do is not right. And you need to be disciplined. But mommy could not ever stop loving you. Ever." And of course, as He so often does, God spoke so clearly in that moment. Because that's how it is with He and I too. Crushed to my chest. Until he squirmed away- Because boys will be boys. And cuddling isn't their favorite when they are four. Trying again today. Learning who they are. How they need to be love. Learning more about this patient thing. Because thy are my boys.

O Baby!

Rachel, who writes about she and her husband's much anticipated upcoming adoption on her blog "In His Hands Our Adoption Journey", invited other bloggers to join her in posting their baby pictures today. My linking is not working today (will.not.throw.out.window) So, I'll do it the old fashioned way. Visit Rachel's baby picture blog post here http://inhishands-ouradoptionjourney.blogspot.com/2009/04/o-baby.html

I've mentioned Rachel before in a post I wrote about the big giveaway she was hosting to raise money for their adoption. Incidentally, I won the prize package #2 and will be posting more about that in the near future. It was amazing!

Rachel and Josh excitedly await their baby from South Korea. The waiting is not easy, and as she waits, Rachel wants to surround herself with baby pictures. :)

Here is my walk down memory lane... (This was fun!!)

My very first Easter. I was around 2 months old. And apparently not too happy about it. My mom is holding me and my two grandmothers are with us. I think I was probably around a year old in this one...

This picture had some wrinkles and was not kept up the best, so it didn't make for the greatest scan - but here I am at age 4. :)

And six. Yes, my hair was so long I could sit on it.

And high school graduation.

Such fun going through old pictures and all of the memories they hold!

Okay, ready for some super cuteness?? I found these of Dave:

Oh my!! I think he might have been 2 here? Not sure, maybe Mom Mc can help me with his ages.

Check out the chubby cheeks!! I just want to squish them and kiss them. :)

Maybe 4? So, so cute. And some pretty familiar looks...