Five years of Jay

Yesterday he stood on a chair next to me at the counter as I chopped apples. We worked methodically together. I chopped, he threw them into the bowl. Chop, chop. Throw, throw. "Mom, K is different than us." Throw. "Yeah, there are some things about him that are different than you, huh." Chop, chop. "He's different because he scoots and he quotes movies all the time and he likes to watch movies and play his computer more than playing outside and stuff." Throw, throw. Chop. "We can really love people who are different than us Jay, can't we!" "Yeah." Throw. "And there are other people who aren't quite like us who really need our love too. We can show them how much we love them and how much Jesus loves them." Chop. "Tell me mom, I want to know all about it. Tell me why they are different and how they are different." Pause. And his eyes - they had a depth that surprised me. A seeking. A curiosity which begged to be satisfied. Tell me the mysteries of the world. Show me. Teach me. Tell me why. Five years ago today he rocked my world by coming into it. My body was raw with the exertion of it. My mind was numb with the enormity of it. My emotions were all over the place. And little did I know that those feelings would not be compartmentalized to the moment of giving birth to him. They set the tone for my relationship with him. The little boy who has made me realize my most ungracious faults. Some of my deepest fears. My uglier moments. As well as my greatest strengths. And my ability to be flexible and learn It is my Jay. And this love I have for him is crazy. It's deep and tumultuous. It rides out the mountains and valleys. He pushes my buttons. I lose patience. He pushes the limits. I ask him for forgiveness. He smiles that smile. And I am lost in the beauty that is my Jay. The candid honesty. The pursuing, inquiring, seeking. I may be young, but I deserve an answer. I want to know! The anger - that needs to channeled and controlled, but even through that I can see a passion and a tenacity for living his life out loud which can be admired. Needs work though. Lots of work... To the little man who has shown me how many variations there are to loving ones child, like the colors of the rainbow and the tides of the ocean - loving him has cracked this mama's narrow view wide, wide open; Happy five. I love you!

Oh the squishiness...

If I could bottle up the essence that is 4 months old - oh I would! No doubt.I would treasure it and save it for a rainy day. I would let it remind me that no matter what is going on inside of me and no matter what is going on around me - there is good. So much good.

There is just something about that fresh-from-heaven purity and innocence... It's such a reminder that God is good all the time. The grins, the giggles, the freedom, the acceptance. There is something about this age that is simply magical. And it is also a great reminder that there is a point in time during this life when squishy fluffy thighs are just about the best thing ever... And what could be better than that??

Be gone - you are not my friend

It seems to stalk me wherever I go. Sometimes even sneaks stealthily into my dreams and my happiest moments. Most of the time you would never be able to tell that while I am talking to you I am constantly wondering what you are thinking of me. -If you understand me. -Humiliated that I pronounced that word wrong or couldn't find the perfect way to articulate what I wanted to say. -Afraid that some how, some time, in some way, my lack of knowledge and higher education will be uncovered by your accomplished enlightenment. -How many times I thought about not blogging one more word. It's from my heart - it breaks down too many walls. Puts my short comings out there too far. I have battled it for as long as I can remember. Insecurity. It comes and goes in streams of emotions, hormones, and circumstances. Some times a sweet and peaceful confidence edges it out. But never completely. Never fully. It is still there just lingering; waiting in a dormancy that is anything but gone. There have been real moments of victory. I have come too far to just regress in a moment of running back to it when no body is looking. But that is exactly the pattern I have fallen into. It has been there for years and I have tolerated it. Perhaps even gotten used to it on a comfort level. Worn it like an ugly overcoat. Accepted it as "just me". And the truth is I don't know me with out it. You see a smile and perhaps an extroverted facade. It's what you can't see that has slowly been eroding away the me that I was meant to be. Somewhere along the way I began mistaking humility for self deprecation. And in a cruel and strange twist of logic it has snowballed into the very opposite of all things humble. Tolerating this foe, which I have allowed in as if a friend, is not going to work for me anymore. This is not working at all anymore. The questioning. -Questioning my parenting. -Questioning every ounce of my worth. -Questioning what I have to offer. -Questioning his love... {and His love}. It doesn't just make me miserable - it affects so much more, and so many more, than just me. I'm not sure where to start. I can not begin to calculate the amount of time and effort it will take to daily (for sure, sometimes hourly) put on the assurance and courage that God intends for me. All I know is that last week when I began pondering the ministries that God has placed me in I felt one thing - only one thing - {Paralyzed} And I knew that this feeling, this disease, had overtaken far, far more than I had ever realized. I didn't mean to let it happen. And it can't continue. I am not writing this for anyone's assurances, or approval. Because that is the very thing that insecurity would motivate me to do. So much. And since I am in process of breaking it off with insecurity that is the last thing I need/want. My motivation for putting these thoughts into words on my blog is to document that today I really recognized the bitter pill that this is. And with God's help and accountability from people in my life I won't be taking it anymore.

In which my child pledges his allegiance to the United States of...Canada

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{Bruised}

There they are. Marring the smooth, pure, ivory skin on the back of both of his hands. Bruises. My stomach still churns a bit when I see them. It was where they placed the IV line. And then, when one came out, where they had to place another. It was a struggle. He had so many IV's, blood transfusions, and blood draws in the NICU when he was a small babe that it is now nearly impossible to find a good vein. During this most recent hospitalization I watched them insert the needle and search. Prodding and poking, moving the needle under his skin. The nurse on duty did it as carefully as she could, and I saw small tears threatening to fall from her blue eyes. I gulped in air and bit my lip. I wished it was my hand. So bad. So, so bad - I wanted to be the one in the bed. I asked them to stop. Not to do it. Why did they have to do it? We were just in for tests. Why an IV? Please just stop. But then they explained. It was for his protection. We had never seen him have a seizure while not on his meds. Didn't know how he would respond. Wanted to take all of the precautions they could, just in case. If he needed some emergency medication immediately, there would be a means for that. So I sat. I let them do it. I stroked his hair and told him it would be over soon. They never did need to use the IV line that was placed, but it was there in case he needed the rescue. It was there to rescue him. And now the mottled patches of ugly browns, greens and blues that decorate the back of his hands remain as a reminder. It made me think of some of the "bruises" in my own life. Things that I didn't want to go through, saw no point in, and even asked God "Why do we have to do this? Stop. Just stop." But they were situations that were there to rescue me. The "me" syndrome that says "it's all about me, keep me comfortable, keep my pride intact, keep my life stable, secure, and happy". Me, me, me. Indeed, I have gotten some bruises that have rescued me from me. I am still very much in process of seeing my pride for what it is and submitting to the bruises. Mottled patches of ugly browns, greens and blues that really aren't that ugly after all. They decorate the smooth, pure, ivory veneer of my ideals and delusions of perfection. They are there to rescue me. Mottled patches of ugly browns, greens and blues. Beauty. "But He was wounded for our transgressions, He was bruised for our guilt and iniquities; the chastisement, peace and well-being for us was upon Him, and with the stripes that wounded Him we are healed and made whole." Isaiah 53:5 (amplified) They are there to rescue me.

I'm renaming him "Murphy"

When our week with K in the hospital was coming to an end, with a predominantly unsuccessful result in what we had hoped to accomplish, we offhandedly joked that he would likely have the seizure once we got home. You know where this is going don't you? Indeed, as Murphy's law would have it, we spent 5 days in the hospital trying all kinds of things to cause him to have a seizure so that we could capture it on EEG and video monitoring - during which time he did not as much as sneeze for us, but in the two days that we have been home he has had 3 - yes THREE - seizure type episodes. At this point I am not really sure what is going on. If he didn't respond to the knowledgeable doctor's efforts in trying to induce a seizure it may be that these are not seizures after all. I do not know if they are hurting him. I do not know what in the world is bringing them on. I do not know when the next one will occur. I do not know if he just has a longer reaction time and he is now responding to everything we tried while he was in the hospital. I do not know if his currant medication is doing anything for him. I wonder if we are missing something. I am going over each episode in my mind and searching for clues. I am trying to deny the discouragement that is creeping up. I am tired and frustrated and hoping. Hoping for something... some clue...some answers..... And in the midst of it God is showing me his sovereignty. I am struggling with how little control I have over the situation, but HE is showing me that I don't need to be in control of it. Because He is and He knows... Would you join me in prayer for this precious little guy who has so stolen my heart?I love him so.

Your dedication - Happy 4 months!

Today you turned 4 months old. And today we had the honor of dedicating you to the Lord in front of our church family. What a special way to celebrate your first four months with us! -To celebrate our hopes and prayers for your life. -To celebrate a day where love is highlighted; Valentines day. Little Malachi, this morning tears moistened my eyes as I held you close and listened to the challenge from our pastor. -To nurture you in love, ours and God's. -To model for you what it looks like to live a life for the one who created it. My greatest hope for you is that you will desire to follow Him with all of your heart. ~Mommy We choose not to baptize our children when they are babies, because we want them to make that choice on their own. We don't want out faith to be shoved onto our children. We pray that they will choose to follow the Jesus whom we love. We daily pray with them and teach them about why we love Him and why we follow Him, but we will not make these highly important decisions for them. A sweet tradition that we do embrace is dedicating them to the Lord in our church. It is not some kind of a magic ceremony where we imagine that if we do this they will follow Jesus forever and go to heaven. No, we don't believe that at all. Our boys certainly have free will, and lots of it. Instead this is a time where we declare to God and to our church family that we are committed to bringing up our children in a godly home and in a way that draws them closer to Jesus. This was a morning with tender moments that we will not forget.

{He}

~Makes the best pancakes I don't even know why his taste so much better than any I can make ~Has an incredible amount of patience with our boys incredible ~Has a great work ethic ~Can be really silly Makes me laugh - even when I am grumpy ~Has eyes that literally sparkle when he is happy ~Laughs at trends ~Can fix just about anything ~Can make just about anything His classic line when I see something I want need: (said in deep assured voice) "I can make that" ~Has traveled all over the US ~Has an affinity for technological gadgetry ~Wants to crash into/run over the cars and trucks that pull out in front of him at the truck stop a few miles from here Fortunately also has some self control ~Can be a bit of a perfectionist ~Reminds me that I don't do dehydration well Gets me water when he knows I am depleted ~Tells me I'm beautiful when I've been spit up on And pooped on And peed on And puked on And haven't showered in.... a while And feel the furthest thing from beautiful ~Brings me flowers Just because ~Gives me logic When I'm too tangled in emotion ~Shows me the other side When my outlook is too narrow ~Plays the trumpet ~Reminds me of who I am When I lose sight of me ~Reads me the Bible Each night ~Calls to tell me good morning Every week day from work ~Can mess up my kitchen In a matter of minutes ~Calms me down When I'm dealing with a toddler fit Or fussy baby Or daunting medical issues ~Prays with me ~Has two chain saws And knows how to use them ~Has spent a couple of recent Saturday mornings at our church Attending "leading your family" seminars ~Is so very honest ~Loves people Like just really, really loves them ~Tells me to go back to the salon When I'm frustrated with my new haircut that just did not work ~Likes nascar ~Gets extremely quiet when we are having a disagreement or he is frustrated When all I want to do is talk it out ~Changes diapers ~Listens to country music ~Does dishes ~Sings in the choir at church ~Gets frustrated when I make us late ~Lets me buy shoes Even though I have too many ~Is always striving to be the best man he can be ~Holds good customer service in high regard And conversely, can get very ticked off at bad customer service ~Let's others hold him accountable ~Loves all things outdoors Camping, hiking, bike riding, hunting, boating, fishing, gardening ~Is very nurturing ~Teaches me about grace ~Adores his boys And seeing him interacting with and adoring them does things to my heart ~Encourages me in my ministries ~Makes mistakes Falls down and gets back up ~Is "frugal" ~Has a very soft heart ~Can whistle with his pinkies And I've always wanted to do that ~Teaches me every day what it means to love and be loved

I ♥ him

Naps are way overrated anyway...

I love it when all six of us are at home together. K was discharged from the hospital around 10:30 this morning. Best case scenario of the week would have been K having a seizure while hooked up to the EEG and constant video monitoring so that we could get a detailed peak into what his brain is doing while he is having a seizure and make a very informed medication plan. The reality of the week is this: K rarely does anything expected or typical. We went through 5 days and four nights of very little sleep, lots of balancing and juggling of work life, family life, and hospital life, we tried stressing him out in different ways to induce a seizure, I think we got far more stressed than he, we drove the 60 miles between home and hospital alot, we relied on other people and realized how very cared for we are, somewhere in there I turned 29, K charmed an entire pediatrics unit into loving him and making excuses to come into his room, and in the end he never did "cooperate" by having a seizure. It was not an easy week, and I struggled to think it was all in vain yesterday. However, that is not the case . Even though we will not be able to see exactly what goes on in his inner workings during a seizure, the 24 hour EEG test results will help aid his neurological medical team in figuring out a few more things. We have a follow up appointment with his neurologist in March and we will talk about their findings. Did I expect that K would really have a seizure and all of this would work the way the doctors planned it? - If I did I should laugh at myself. This is K we are talking about. My color outside of the lines, think outside of the box, rarely respond in ways any one could ever guess, miracle K. :) Such is life. Excuse me while I go take a nap. After I calm down my almost 4 month old who seems to be teething rather prematurely. Something tells me that nap may just be a fantasy for a long long time.

{Day 2}

Snow, snow, and more snow. The view out my window Lovely, I know. What could be more charming than cement and glass?? Still no seizure. Last night they tried some flashing strobe lights to try to induce a seizure. Generally people who are prone to seizures will respond to that. Caleb thought it was time to party. It did nothing for him in terms of seizure activity. That's my boy. Daddy took the night shift last night and I came to relieve him around 2:30 this afternoon. I get the night shift tonight. This just happens to be the night that they want to try some sleep deprivation. Lucky me. I get to try to keep him up until midnight and then wake him at 6am. Ummm... Who's going to wake me up?? Oh right, the nurses who come in to check vitals and such every few hours. :) Tonight Baby Kai is along for the ride. Makes things very interesting. Loaded the dishwasher this morning. Rewashed the load of clothes that were in the washing machine with little bits of pull up all over them. Did you know pull ups were washable? There not. Got Jay to preschool. Renewed my drivers license. Decided to come up to the hospital four hours earlier than planned because of the large amounts of snow falling. It was a good choice. K got to visit with all of his brothers for a while this afternoon and he loved that! Now more waiting. And trying to stay awake. Don't be too jealous of all the partyin' goin on over here.

I'm pretty sure I'd give the evil eye to some one if they glued 27 little circles to my head too...

He's amazing. Really he is. Day one of EEG and video monitoring. He started out with his great huge signature smile... Saying something about not having to get up early, and not going to school, and being excited about watching DVD's... Then he turned the drama on when they took vitals. He's really not a fan of having his blood pressure taken. Fortunately these wonderful pediatric nurses have alot of experience with small, melodramatic people. So when he said "Owwwww!! Stop doing that! It huuuurrrrtttsss!!!" during the necessary bp check she just smiled and told him it would be over soon. We had a couple of hours that were rough. Three tries to get the IV placed. *Shudder* A mommy who desperately wanted that part to be over, and had to take some deep breaths, sit down, and drink some water in the midst of the vein seeking to regain some composure. About an hour of gluing electrodes to his head and making sure all the right connections were being made. And at the end of that the smile was replaced by the evil eye... But really... who could blame him? Not me. For sure not me. He was one brave boy. Finally they were done and he got a special "hat". The smile returned when much praise was verbalized, hugs were given, DVDs were picked out, and puzzles were brought to the room. He is now resting comfortably and is just as happy as can be. Dave took over at the hospital and I am now home with the other three guys. Apparently Kai shunned the bottle today for grandma - so he and I will be sticking pretty close together for the rest of the week. Now we just wait. And hope he has a seizure that can be captured by video and EEG so that we can get a treatment plan in place and our family can all be together under one non-hospital roof again. Simple as that. :) K is being weaned from his meds, but all of this will take time. The doctors I talked to today seemed pretty convinced that K would need to be at the hospital for most of the week. Thank you so much for your care and prayers! We are truly so very blessed.

It took us years to get to this milestone...

As I took that small silicone tube out of his belly I had a million flash backs all crammed into that one moment. It was like one of those instances in life when you feel like there is a slow motion pause. My fingers eased it out and threw it into the open trash can a few feet away. And as it sailed through the air and into the trash the memories flooded in. The hesitancy of the doctors at sending him home from the NICU because he was not yet taking more than a few ml's of formula by mouth. Educating ourselves on using the nasal gastronomy tube; a small tube which we learned to thread down through his nose and into his stomach. In those first few months at home this is how each feeding was given. We had to learn how to test it to make sure it was in his stomach rather than his lungs. If it was placed wrong he could drown on his formula. Simple detail, ya'know? The late nights of waking him up and trying to get him to take a bottle. Night after night after night. Sobbing in an emotional state that was beyond tired and grasping at hope. 2:00 am - coaxing a tiny 6 pound 4 month old to please, please take the bottle. Telling everyone that he would get it. He would. He just had to! I would work with him. We would start speech therapy. Hour after hour after hour, pushing feedings. And slowly, slowly, I started to lose my mind a little bit. The truth I had been denying was that my child was not eating even half enough to sustain his life. And I could do nothing to change that. I was working myself up into a stressed out state that was at best exhausted, at worst discouraged, and teetering on panicked. It is one of the most common issues that preemies deal with later on in life; eating difficulties. We got hit with it full force in K's case I remember one night when he took the full bottle of formula and I woke Dave up to tell him. I was rejoicing and relieved and just so, so happy! -The only thing was, we were using these teeny, tiny 2 ounce bottles. And he didn't do it again for a very long time. Most of the time we "pushed" his feedings with a large syringe and his ng tube. It was incredibly time consuming. It didn't just consume my time, it consumed my mind. Every single doctor and therapist recommended surgery to place a gastronomy tube into his stomach. I was dead set against it! No! That would mean I was declaring that my child could not eat. And he would - soon. I would keep working with him and very soon he would be eating just like any other baby. But it wasn't to be. And one day something inside of me just broke. K was 18 months old. The thread of hope which I had been clinging to unraveled on a day in which I was sleep deprived and had spent literally hours trying to feed him. Placing the ng tube frequently was becoming more difficult. I remember calling Dave at work and tearfully making plans to call the pediatric surgeon to schedule G-tube placement. I can not even begin to describe the relief I faced in the months following that surgery. I took the pressure off from him and myself and allowed all feedings to go directly into his stomach via G-tube. Previous to this surgery K was not even on the growth charts. In the first year that he had the G-tube he went up to the tenth percentile. He had rapid brain growth and his gross motor skills took off in leaps and bounds. He began walking. He was finally getting the nutrition he desperately needed. It was so very much the right decision for us right then. As the years went by we began to introduce more foods orally, but he still really struggled with eating enough. I kept food diaries and saw nutritionists, but it was quite apparent that he just really needed the majority of his food through the G-tube. And, in true K style, one day when he was about 5 1/2 he began to eat. On his own time table, in his own way, he decided he could do it. We stopped using the G-tube completely about a year and a half ago. He went up to the 25th percentile entirely on his own. We kept the G-tube in, just in case. But a few months ago we began talking seriously about taking it out permanently. It seemed to itch him a little bit and it came out a few times, causing teachers at school a bit of stress. So, yesterday it came out for good. I took him to see the surgeon who had originally placed it and under his watchful eyes, I removed the tube and threw it away. One last time. I felt a little bit choked up - in such a joyful way. God has brought us through so much with getting this little guy to where he is today. 7 years old, 45 inches tall - and 50 pounds.

My favorite room in the house

For all the waiting, and putting our room on the back burner while we did other projects through out the house (Well, and had babies and stuff...), and not really loving our room so much as we waited. {in all it's dingy lavender and very little storage space glory}. Wow was it ever worth it. I have my walk in closet (Which is pretty hard to get a picture of) See in the above pictures of the "Before" - where Dave is kneeling down and pulling off wall board? - Yep, that's right where my clothes are hanging now. :) How fun is that?? And I just added a beautiful new comforter set! I'm so happy about this! I have had my eye on it for awhile, but I am cheap. So I would look at it on line, I would smile, and then look for cheaper ones. I'd always come back to this one for a little peak though - because really, it looks like some one spilled flowers on it. And that just makes me happy. And I love red. Well..... it just so happened that this comforter was on display at the store, and then bagged up and thrown in the clearance aisle. AND - the price was slashed over 50% off. I asked, and there was nothing wrong with it - plus they said they steam cleaned it before they put it in the bag. I may have had some heart palpitations. And then I may have called my mother in law, who had previously asked me what I wanted for my birthday. It is now a part of our "new" room. There are still a few things that I want to put up on the walls, but other than that our bedroom is pretty complete. Ahh yes, good good things come to those who wait. And I couldn't be more pleased!