Lots of thoughts

*** Consider yourself warned - the title doesn't lie - LOTS of thoughts ahead - there's also some formatting issues that I can't figure out - italics for the last half of the post that won't undo - sorry***



I'm feeling much better about everything. We're still hoping for a cancellation soon but we haven't heard anything yet. I would really love to not have to wait until next Wednesday to do another EEG but am doing okay with the waiting right now. Somewhere, between Thursday and Friday of last week, God just really started slowly giving me a peace about everything, and by Sunday I started really feeling the burden lifted. It's reminiscent to how I felt during Cohen's pregnancy... worried? yes Scared? absolutely.... but also hopeful and trusting. It's not so much a peace that everything is definitely going to be perfectly "okay" but a peace that whatever comes will be just what is suppose to happen and settling in to us being okay with that.

A few weeks ago, when I first took Cohen in about the odd behavior, he had been doing it very frequently throughout each day. Then, in between the pediatrician and waiting to get the 1st EEG, he did it, but much less frequently. The same thing has happened here. Since we went to the neurologist and were given this waiting period again, Cohen's has been doing it much less frequently and also with less severity. Though, this doesn't make me feel like it might just go away on it's own (though that would be GREAT and maybe it will - we've seen "stranger" ;) things happen ), I am so grateful for the graciousness of God to give us that reprieve. It's much easier to wait, when it isn't staring you in the face so many times a day.

I've done some research and had many comments and emails about the reflux thing. So to try to address some of that...

From the research i've done, Cohen doesn't really seem to be fitting that explanation perfectly but from some of the comments and links I've been sent, it could be.... so that makes me hopeful. The biggest differences between what Cohen seems to be doing and what some people have described is 1. his eye movements( for Cohen, it's not really his eyes, just his eyelids and what some have described with the reflux condition - rapid eye movement is involved.) and 2. he doesn't have torticollis nor does the behavior he's doing exhibit anything resembling torticolis. I thought he might at one point when he was an infant because of his side preferences but he didn't and he isn't doing any head tilting or turning with this behavior we're seeing. He has OT and PT ( hey Mary and Heather!!!) every week and they are pretty on top of things so I think they would have caught something like that, anyway. :) But I've seen and heard so many different odd things that have ended up just being reflux so that makes me hopeful. Cohen does tend to it most when he's eating but he does do it other times too. This would def. jive with the reflux idea with it happening mostly at meals. Funny, both my boys have had reflux... Cort's was really severe(losing weight, major projectile vomiting, refusing to eat, not sleeping, lots of screaming) and Cohen's has been more mild... and we've always done everything we could for them NOT to have it... both were(cort) or are(cohen) on medications and now, I'm almost praying that Cohen's reflux is more severe than we thought!! Funny, how stuff will put things in perspective.

I spoke at great lengths with my pediatrician about where we'll go from here if we don't catch the behavior on the EEG. There are several options but some involve admitting to the hospital which is something we want to avoid if possible to keep his exposure to illnesses down. We'll visit all those ideas when the time comes. And can I please just say, how blessed we are with our pediatrician. She spends time with us when she does not always have the time, she checks in on us, she cares, and she's invested. It's hard to have a child with a diagnosis that nobody knows anything about because he's the only one in your country with it but it helps to have a doctor that cares in your corner.One that fights with you to get what your child needs. We really are so blessed in that!!!

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We've been studying Ecclesiastes in church and while at first glance it isn't' the most uplifting book in the Bible, I have really enjoyed the series so far. When you get to a place in your life(basically when you leave childhood and enter adulthood for most people) where you have seen so much pain - not necessarily in your own life - but even in people's lives around you - there is something actually comforting about the Biblical support of how broken the world we live in is. ( chapters 1 and 2) And in chapter 3, when it's talking about the seasons for everything, it's incredible to read it and actually be able to recall or name each of those seasons in our lives. We don't get to pick just the good ones, it's all a part of our lives. And it's all from God - it's all part of His plan. Each season is a part of your life - it makes you who you are, it brings you closer to God - not just the bad times but also the good. And for every bad season and even in every bad season, there is good. Those are the things to enjoy.

I love when you read something you've read over and over again but then it's almost like seeing it for the first time:

⁹ What do people really get for all their hard work? ¹⁰ I have seen the burden God has placed on us all. ¹¹ Yet God has made everything beautiful for its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God’s work from beginning to end. ¹² So I concluded there is nothing better than to be happy and enjoy ourselves as long as we can. ¹³ And people should eat and drink and enjoy the fruits of their labor, for these are gifts from God.

¹⁴ And I know that whatever God does is final. Nothing can be added to it or taken from it. God’s purpose is that people should fear him. ¹⁵ What is happening now has happened before, and what will happen in the future has happened before, because God makes the same things happen over and over again.

Ecclesiastes 3:9-15


"Yet, God has made everything beautiful for its own time"


I have seen this to be so true in some unbelievable ways over the past year or two. I have seen beauty come from things that really should have no beauty at all. From the loss of a mother or father, a job, a loved relationship, a dream, or an expectation, to even the moment of feeling your child take their last breath. I have seen the heartache, the misery, the grief, the agony,some from the sidelines, some first hand, but I have also seen and felt indescribable beauty in it all. That beauty is only from God. And why are we at all surprised by this? As Matt said on Sunday, When Mary was at the foot of the cross and her only possible question left is... where are you now, God?... God's answer? I can even make this beautiful.

And he did!!

And if God can make what happened on the cross beautiful, then what in my life do I not think he's powerful enough to make beautiful? Why even question it? Why ever fear it?


He is a God of restoration. That's what he's about.

Yes, here on this earth their are all sorts of seasons. Good and bad. Hard and Easy. But there is a season ahead that will last an eternity. A season so beautiful that our minds can not even begin to comprehend it. And this part of our lives, the part that we think matters so much day to day is just a small, tiny speck, in the grand scheme of things. And so, why waste time harping on the hard parts. Why not enjoy what God has given us to the fullest extent possible? Knowing our hope is not in the things of this world. Knowing that we cannot see the whole scope of his plan but He can - and the end result is beauty!!

As I listened to this on Sunday, I felt the feeling I felt over and over again while I was carrying Cohen in my womb. In many moments of desperation, when I just felt overwhelmed at my love for Cohen. When my body physically hurt at the enormousness of it, when I would call it out as if my love would be enough to change it...I would hear God say it the quietest of voices, " I love him more"

And He does. Love him more.

And I laugh a little and am shamed at the absurdity of me not wanting to give Him control of something as little as possible seizures( yes, I just said little - you might have to remind me of that sometime later ;)) when He is the very one that sustains Cohen's life. When He is the very one who breathed life into him at birth and still does today. When He made something "incompatible with life" oh, so compatible.

Another question asked on Sunday was, "What if all the suffering is part of God's plan for this world? What if it's all to bring him glory and bring you closer to him? " Isn't that worth it?

From where we stand, it is. Even when we sometimes forget that.



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From time to time, I think of taking my blog private. I never started the blog for anything more than for my out of town family to get to see pictures and the doings of the kids. And while my blog certainly doesn't pull in the attention or comments of say, MckMama's, the reach of it is much bigger than I ever expected, set out for, or even desired. But I received an email two nights ago that is exactly why I don't take it private. If you would, please pray for a sweet lady, who just received the same fatal diagnosis for her sweet baby girl that Cohen received in utero. Not only is it an honor to be allowed to offer some comfort to people like her - to offer someone tangible to grab hold of when you think no one else has ever walked in your shoes. But it also is a great reminder to me of where we have come from. The gift God has given us. The blessing that it is to even be waiting too long for an EEG as we celebrate his 14 month mark today!! Please pray for her, like you prayed for me.... a miracle, time with her daughter, comfort, and peace.

Also, this blog has been such a blessing to us - to have a way for people who care to check in and pray for us. To receive encouragement and support along the way has been so valuable to us. And so have the connections and relationships I've made along the way in this blog journey. I used to think blogs were super silly - strange to put your life out their like that and like I said at first it was just for our family and a few friends - the jump to having "strangers" read it has been a little strange and sometimes overwhelming but we have been so blessed through it. Thank you for that!!!

I promise soon, I'll get back to posting cute pictures and normal day to day things. :) As always, I have multiple posts in draft. I'll hopefully get to them soon. Thanks for praying for us though when times like this settle in .