Process

The other great benefit of getting up at 4:30am to go workout is that I am home by 6:15 and the kids are either still asleep or just want to sit in front of the TV and watch cartoons. We don't have to start getting dressed and eating breakfast until 7 which means I have plenty of time to drink coffee and have devotions. Last week I wanted to pick a book of the Bible to work thru that was not the same as our Community Group. I was thinking about the suffering forum I had gone to at church and going over some notes from that at the same time and I decided Job would be a fitting book to read thru. I thought I might need something up-lifting as well and decided to read the Psalms as well. I have been reading one chapter from each book and reading My Utmost for His Highest by Oswald Chambers. I have been reading this devotional for years now and I can't imagine not reading it. There are always new nuggets I pull out. Today I read Feb. 28th and I also read Feb 29th for the heck of it. Here is the 29th's...

"Lord, that I may receive my sight." Luke 18:41

What is the thing that not only disturbs you but makes you a disturbance? It is always some thing you cannot deal with yourself. "They rebuked him that he should hold his peace . . . but he cried so much the more." Persist in the disturbance until you get face to face with the Lord Himself; do not deify common sense. When Jesus asks us what we want Him to do for us in regard to the incredible thing with which we are faced, remember that He does not work in common-sense ways, but in supernatural ways.
Watch how we limit the Lord by remembering what we have allowed Him to do for us in the past: I always failed there, and I always shall; consequently we do not ask for what we want. "It is ridiculous to ask God to do this." If it is an impossibility, it is the thing we have to ask. If it is not an impossible thing, it is not a real disturbance. God will do the absolutely impossible.
This man received his sight. The most impossible thing to you is that you should be so identified with the Lord that there is nothing of the old life left. He will do it if you ask Him. But you have to come to the place where you believe Him to be Almighty. Faith is not in what Jesus says but in Himself; if we only look at what He says we shall never believe. When once we see Jesus, He does the impossible thing as naturally as breathing. Our agony comes through the wilful stupidity of our own heart. We won't believe, we won't cut the shore line, we prefer to worry on.

Today was the first time that I had this thought... Ever since Gavyn got sick and was in the hospital, and ever since we realized Nevin was not going to be able to talk like a typical kid, I have had nights where I can not sleep. I lie awake in bed and stare out the window into the blackness. I cry, I sob, I pray, I beg. I want God to do a miracle and heal them. To take away Gavyn's hydrocephalus. To strength and heal his legs so he can run and play. For both of them to grow. For Nevin's mouth to "be opened" and for speech to spill out that is intelligible. These nights have become less frequent but I felt they would always be there. Until this morning after I read that.

"When Jesus asks us what we want Him to do for us in regard to the incredible thing with which we are faced, remember that He does not work in common-sense ways, but in supernatural ways."

What if the "incredible" thing that I need to ask God for is not healing for my kids but healing for me. To be free from the immense amount of shame and guilt I have. To not blame myself for Gavyn getting sick. To not feel guilt over Nevin being diagnosed at 3yrs and 5yrs old with his conditions. I can not imagine a life feeling free from that. I have had two of the boys doctors tell me to not feel this way. Dr. Werner from the PICU who told us Gavyn had hydrocephalus and Dr. Braddock our genetics doctor. Dr.Werner was an amazing doctor who told me some very powerful things that I still think on. Dr. Braddock completely caught me off guard on Tuesday when he brought up the guilt thing. He joked it was a mom gene that you can't get rid of but that I need to stop beating myself up. That none of this was my fault. I didn't know how to respond but I have been thinking about it. Today reading this gave me new insight. Healing. God is in the business of healing, I have seen it so much in our lives. Is it my turn now? Perhaps. I am not sure how to ask though....

Normal Kids

We found out about Nevin's diagnosis 22 days ago and it has been a roller coaster of emotions since. This week we met with our newest doctor, Dr. Braddock of genetics, to go over our new diagnosis and also have testing done on Gavyn. Since finding out about Nevin's diagnosis we have been in and out of our peds office and one of our many visits was Gavyn's yearly check up. Oh my... It was a crazy day but the craziest thing was his growth. The kid grew less - LESS than an inch in an entire year. Growth problem? Ya think! I kid you not he is the size of an 18 month old. Something is amiss. Our ped wrote up the order for blood work and we went right over to Children's Hospital and had it drawn. Shockingly his thyroid levels were fine along with everything else, he is just low on Iron, bought the Flintstones and we are good to go. I have a call into Nevin's endocrinologist to set up an appt for Gav. In the meantime we saw Dr. Braddock and he didn't seem to be of the persuasion that Gav has 22q Deletion but there could be something with genetics. We are testing him and waiting our 2-4 weeks to hear results. *sigh*

It feels so strange to write all of that and have this resounding thought in the back of my head. They Are Normal Kids. They really, really are. Every kiddo has quirks, strengths and weaknesses, as parents we try our best to set them up to be successful in life. I don't treat Skyler different than I treat Nevin (just modified for age). Nevin and Gavyn happen to be the two strongest people I know and they are kids, teeny tiny kids by the way. Yet, they have already over come so many obstacles and endured so many trials, more than some people will ever face in a life time. Take walking for instance... When you have a baby you don't normally think, I hope they walk one day. You usually think things like, Oh man, when they walk I'll go crazy! When both of them were born I never thought they would not walk but as they progressed it was a thought, would they? Would they not? Nevin walked at 18 months and it was a struggle for him. At the time we still did not know there was any kind of issue, he just seemed more laid back than his hyperactive brother. But looking back, knowing what I know now, it was a struggle for him and he never gave up. Gavyn we knew at infancy that walking might be out of the question and he could be in a wheelchair. When that kid finally started to crawl I had hope. He army crawled for a long time and he would drag his body all over the house and up the stairs. Up the stairs people! Can you imagine doing an army crawl up a flight of stairs? Try it sometime, it ain't easy and he would do it over and over and over again. The day he took a step felt like more joy than the entire world could ever contain. Yes, they are my hero's and they are normal kids. They love to laugh, make jokes, sing songs, watch cartoons, harass their brothers, give hugs, get scared of the dark and would rather go to grandma's house than anywhere else in the world. They are normal kids. Normal kids with incredible strength and I love them. I'm so proud they are mine.

Tenth Avenue North - Worn

I’m Tired I’m worn My heart is heavy From the work it takes to keep on breathing I’ve made mistakes I’ve let my hope fail My soul feels crushed by the weight of this world And I know that you can give me rest So I cry out with all that I have left

Let me see redemption win Let me know the struggle ends That you can mend a heart that’s frail and torn I wanna know a song can rise from the ashes of a broken life And all that’s dead inside can be reborn Cause I’m worn

I know I need to lift my eyes up But im too weak Life just won’t let up And I know that you can give me rest So I cry out with all that I have left

Let me see redemption win Let me know the struggle ends That you can mend a heart that’s frail and torn I wanna know a song can rise from the ashes of a broken life And all that’s dead inside can be reborn Cause I’m worn My prayers are wearing thin And I’m worn Even before the day begins I’m worn I’ve lost my will to fight I’m worn Heaven come and flood my eyes

Let me see redemption win Let me know the struggle ends That you can mend a heart that’s frail and torn I wanna know a song can rise from the ashes of a broken life And all that’s dead inside can be reborn Cause all that’s dead inside will be reborn

Though I’m worn Yeah I’m worn

Savior Please - Josh Wilson

Savior please take my hand I work so hard, I live so fast This life begins and then it ends And I do the best that I can But I don't know how long I'll last

I try to be so tough but I'm just not strong enough I can't do this alone, God I need You to hold on to me I try to be good enough but I'm nothing without Your love Savior please keep saving me

Savior please help me stand I fall so hard, I fade so fast Will You begin right where I end And be the God of all I am because You're all that I have

I try to be so tough but I'm just not strong enough I can't do this alone, God I need You to hold on to me I try to be good enough but I'm nothing without Your love Savior please keep saving me

(Hallelujah) Everything You are to me (Hallelujah) Is everything I'll ever need (Hallelujah) And I am learning to believe (Hallelujah) That I don't have to prove a thing (Hallelujah) 'Cause You're the one who's saving me Hallelujah

I try to be so tough but I'm just not strong enough I can't do this alone, God I need You to hold on to me I try to be good enough but I'm nothing without Your love Savior please keep saving me, Savior please keep saving me

Empty

I have been desperately wanting to blog since the news last week but I haven't found the time. As I said, we received the news that Nevin has 22q deletion on his birthday (last Wednesday) and his and Gavyn's combined party was on Sunday. I think the party is what got me thru those first few days. Wednesday was rough but Thursday was better, Friday I was mad, really mad, Saturday I was occupied with party prep until church. Church... That was hard.

Now I can't remember what songs we sang but I do remember having this thought:
You (God) hold everything together. You formed my babies in my womb. You made them how you wanted them to be and you chose to leave off a tiny piece of Nevin's genetic makeup - possibly Gavyn as well. Why? Why would You do that? How does this bring you glory? How much simpler my life, their lives would be if You hadn't done that.

I wasn't mad though. I've been more angry at other people and not so much God during all this. I just have so many thoughts in my head and heart. I'm full of questions and feel completely empty. Empty. I've never felt this empty before. It's like someone kicked me in the chest, knocking the wind out of me and I haven't caught my breath yet.

I suppose answers come slowly and time will heal some hurt.

Happy birthday, here's your genetic diagnosis

I thought I would have lots of insightful things to say when we heard back from genetics but, I don't. Of all days to call they actually called on Nevin's birthday. Really? It kind of pissed me off. Happy birthday, you have 22Q Deletion. That's right, we have a diagnosis and it completely caught me off guard. I had really convinced myself that there was nothing wrong with his genetics and it was a waste of his blood so to speak. I was wrong. Not only did they find he has 22Q Deletion, but that is the very thing suspected by a grandma, who happened to be a nurse, who walked passed us at Glennon on our way to the cleft palette team. Her grandson also had it. Strange, huh? I don't know if there is a stranger feeling in the world, talking to a doctor or in this case a counselor about how your kid has this thing wrong with them that they will have the rest of their lives. How it all happened by chance and it's not because I'm a bad mom, it just happened... by chance. Thanks for saying that, again, and again. It really doesn't lessen the blow, I'm not sure they know that. It just makes you really mad, at everything, it reminds you just how unfair the world really is. Yes, it does answer a multitude of questions but it doesn't make you feel better. Everything is kind of still the same but worse. Now I have a zillion questions that I might have never entertained before. So no, I don't have great insight but I do have a lot of anger right now. A lot.

Birthday Palooza

Here we are, it is February 1st and I am bracing myself for birthday marathon to begin! Some how our family has picked the shortest month of the year to have as many birthdays as possible. We have a total of 6 birthdays to celebrate in February and that is just our family members, we have quite a few friends with their own birthday celebrations. Last year when Nevin turned 4 and Gavyn turned 2 we did a combo birthday bash and it worked out well. I decided to do the same this year and we picked a cars/trains theme. Originally they wanted Lightening McQueen and Thomas but honestly, I can't bring myself to do another full blown Lightening birthday, we've had 3 already. I found some super cute ideas on Pinterest for transportation themed celebrations. I have been told I completely over do the birthday party (maybe just parties in general) with themes and crazy planning but, I LOVE it! I really do. :) With four kiddos it is nice to have one special day that gets to be about them, even though Nev and Gav share a party it can still be special for each in their own way. My friend is coming Saturday to help me with the kids while hubby is off shooting his TV special. We decided to tackle the cardboard crafts together and make something awesome!

I can not wrap my head around the idea of Nevin being 5 and starting kindergarten this year, much less Gav turning 3 and starting preschool!! Today I chatted with Nevin's teacher to get the bus set up to take him to class when Gavyn starts preschool. That is crazy to me but I think it will be good for him. I never thought I would use the bus (they scare me for various reasons) but with the crazy opposite schedules my kids schools are on I feel my hand is forced. Gav and Skyler go to school at 8:30, Gav gets out at 11:30, Nev goes in at 12:15, Skyler gets out at 1 and Nev gets out at 3:15. Yeah... Thankfully in the fall they will all go to school at 8:30 but they will still all get out at different times. Oh well. I am still excited for Gavyn to start preschool and Nevin to start kindergarten in the Fall. I think it will be good for both of them and they will get so much help through their IEP's. The kind of help I can't give them alone at home. Should be an exciting year.