"I have no idea what I am doing!!"

Its a sudden feeling that hits you all at once that breaks you down to say the words "I have no idea what I am doing!!" ...Today I released those words to my mom with tears in my eyes.. I am sure no one wants to hear those words..we dont even want to say them because it seems like once you say it, you could just lie down on the floor and say "whatever" to life... but sometimes we get to the point of saying that and feeling that!!

Today I was feeling that way after a week of the flu with both boys, and a couple here and there "worries" for Levi...I wont get in to details of that, but there are things that pop up sometimes that are like "ummm, ok is this normal or spina bifida related?"
One week of being down with the flu disrupts so much for Levi..It certainly isnt a good idea to have him wear his back brace when you are dealing with throw up and 103 fever...he certainly doesnt feel like walking and moving when he doenst feel good, or wearing his eye patch. So the last few days have been about getting him motivated to move again and getting him back on his routine...  He wears down fast, its hard to see the digression after so much hard work recently....

Seems like as he has been able to verbalize more and as he is growing, I am becoming more aware of the reality of spina bifida...I guess its mostly hard because its so much unknown! I mean the spectrum of conditions and mobility associated with this disease are so broad that its just so hard to know to know what to expect...Some kids may walk and then BAM out of no where there is some condition that causes them to completely loose the function that they had...or some child may have the same lesion level and have be able to run and walk while others are wheelchair bound... It doesnt give a person a whole lot of confidence in what will be.

 Today I feel all flustered over 2 things..one being that Levi's scoliosis seems to be worse than before according to his PT and also what we observe, and in addition to that, his hip seems to be further dislocated... you can feel the dislocation. (eeek) The last Dr. apt we had was in Feb. and we knew his hip was further dislocated but it was on 'watch' as well as his scoliosis....So since out apt, we requested a back brace on our own because we wanted to address this...apparently the hip is nothing to worry about according to his Dr. because I guess it doesnt affect his mobility (????) and he wont feel it...Well guess what..Levi has been reporting pain in his hip lately...Surgery is usually not the best option because there is a good chance it will keep coming out with kids with spina bifida....
Today I spent the morning investigating hospitals out of state that specialize in hip dysplasia in children...
many require 3-6 months of hospitalization and casting...it just seems so horrible to think about it. I mean I CANNOT imagine how you have an active almost 3 year old who just is learning how to walk bed ridden for something that is uncertain if it will work to fix the problem? how do you do this in another state? How do you do this financially? how do you do this with another baby?? So many questions....

I was thinking and kind of panicking about something that I dont even know about yet, but the thought scared me...This is why I was reminded of this verse
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 Matthew 6:25-34

25 “Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? 26 Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them.Are you not of more value than they? 27 And which of you by being anxious can add a single hour to his span of life?[a] 28 And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, 29 yet I tell you, even Solomon in all his glory was not arrayed like one of these. 30 But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O you of little faith? 31 Therefore do not be anxious, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the Gentiles seek after all these things, and your heavenly Father knows that you need them all. 33 But seek firstthe kingdom of God and his righteousness, and all these things will be added to you.34 “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.

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I was thinking about how its hard when we dont feel confidant in things, and I started to think about all the things I dont have confidence about anymore...How when you feel like so much has changed and you dont know what the next day looks like...

.

My friend and I used to do this thing when we would find ourselves speculating and worrying about things we would say what we did know ex: "we KNOW that we are loved!, We KNOW that we are going to have fun tonight, We KNOW that God loves us..." ect... It was this thing we did to bring us back to the idea that there are things we are confident in whether we could think of it or not.

 Sometimes we have to get back to that idea. that we dont know what tomorrow brings but we KNOW certain things are true and we can hold on to those things..

1 john 5:14  Now this is the confidence that we have in Him, that if we ask anything according to His will, He hears us. 15 And if we know that He hears us, whatever we ask, we know that we have the petitions that we have asked of Him,.... Hebrews 4:16 "Let us then approach God's throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need."

So i realized today yes, there is much to be unknown, of my future, of Levi's, but there are several things that I can hold on to that I do KNOW!! And I know that I would feel lost without being able to lean on Jesus as my savior...I can pick myself up off of the floor knowing that He knows everything about me, and everything I am thinking about and the things that I dont even have energy to articulate ..I can find rest in this. That HE KNOWS!

And when i am able to shed that worry...I can open my ears to todays calling..."mom, lets make words with these magnets?" "mom can you build me a castle with these blocks"

Philippians 4

6 Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; 7 and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.8 Finally, brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever thingsare of good report, if there is any virtue and if there is anything praiseworthy—meditate on these things. 9 The things which you learned and received and heard and saw in me, these do, and the God of peace will be with you.10 But I rejoiced in the Lord greatly that now at last your care for me has flourished again; though you surely did care, but you lacked opportunity. 11 Not that I speak in regard to need, for I have learned in whatever state I am, to be content: 12 I know how to be abased, and I know how to abound. Everywhere and in all things I have learned both to be full and to be hungry, both to abound and to suffer need. 13 I can do all things through Christ[b] who strengthens me.

Please keep praying, I personally appreciate your prayers for me as well and for Mike..that if it comes down to making these big decisions we will be confident in what is needed...and not have to worry about all the things that are uncertain, but we can rest in knowing its right... Also just for rest for mike and I...There is many things hard to explain but it certainly can takes a lot for a family to always be trying to focus on this disease and how to fight for the best for Levi...We are glad to do it...But it takes a lot of sacrifice on growing in other areas..we are learning about balance and what is healthy for us, and how much we can take on at a time, knowing there are things we want to commit to but cant for our family...Trusting in God, leaning on others...Its hard sometimes! And I also ask for continued diligence in praying over Levi, just like that verse in 1 John...I want to pray with that confidence! (and i forget to!why do I do that??)

Also, thanks for caring to keep up with this...I dont know if you've caught on yet but this is therapeutic for me, and sometimes helps me process and helps me get to the other side...so even if no one reads this its for me!! haha!

Love you all, 

thanks ;)

Psalm 139

 You have searched me, Lord,
    and you know me.
2 You know when I sit and when I rise;
    you perceive my thoughts from afar.
3 You discern my going out and my lying down;
    you are familiar with all my ways.
4 Before a word is on my tongue
    you, Lord, know it completely.
5 You hem me in behind and before,
    and you lay your hand upon me.
6 Such knowledge is too wonderful for me,
    too lofty for me to attain.

7 Where can I go from your Spirit?
    Where can I flee from your presence?
8 If I go up to the heavens, you are there;
    if I make my bed in the depths, you are there.
9 If I rise on the wings of the dawn,
    if I settle on the far side of the sea,
10 even there your hand will guide me,
    your right hand will hold me fast.
11 If I say, “Surely the darkness will hide me
    and the light become night around me,”
12 even the darkness will not be dark to you;
    the night will shine like the day,
    for darkness is as light to you.

13 For you created my inmost being;
    you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
15 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.
17 How precious to me are your thoughts,[a] God!
    How vast is the sum of them!
18 Were I to count them,
    they would outnumber the grains of sand—
    when I awake, I am still with you.

19 If only you, God, would slay the wicked!
    Away from me, you who are bloodthirsty!
20 They speak of you with evil intent;
    your adversaries misuse your name.
21 Do I not hate those who hate you, Lord,
    and abhor those who are in rebellion against you?
22 I have nothing but hatred for them;
    I count them my enemies.
23 Search me, God, and know my heart;
    test me and know my anxious thoughts.
24 See if there is any offensive way in me,
    and lead me in the way everlasting.