Jun 29, 2009

it’s been a tough week because it is becoming more evident that the newest seizure medicine from the UK is not taking away the spasms. claire has a neurologist appt at barrow tuesday afternoon, so i am sure we will be talking about the next step. i am dreading it. so much so that adrian may have to take claire without me. i literally go into a panic just thinking about this. i don’t know why but i avoid all conversations about claire’s brain as much as i can. i do not even want to think about it, see pictures of it, hear more explanations, bad news, etc. it makes me feel like i am having a mental breakdown. i am not exaggerating in the slightest. i am petrified. adrian says that if it is too much for me that he can take her and have all those brain talks and just tell me what i need to know. he is so much better at explaining all of this to me than the doctors. i hate doctors. i don’t care if they are nice, or caring, or smart. they SUCK. he says that i take claire to so many doctors appts alone and so many therapy appts alone, that if skipping the neuro doctor will help me then that is what he wants to do. i love him so much. but i also don’t want him to be there alone either. i know it is hard for him too. at church this weekend, we talked about that even though life is uncertain, God is not. that the bible is not full of happy-ever-after, hunky dorey life stories. remembering that the hebrew nation waited on God for 400 years to have their prayer answered. that even when it feels like God is absent, not showing up in my situation- He is still there. that He often uses the biggest messes to do the most amazing things. and we know that in ALL things God works for the good of those who love Him. that He has the whole world, my world, claire’s world in His hands.
but my heart still asks why, i am still scared, i am still hurt, i am still jealous of my friends’ babies, i am still angry. yet beneath all of that, i am still waiting and i still believe.IMG_0802

by | Categories: faith, family |

11 comments | leave a comment

  1. MonkyePosh
    June 30th, 2009 at 6:33 am #

    God bless you Nicky. Adrian sounds like a wonderful Dad/Husband.
    I hate doctors, and hate going to the doctor too –for the most part.
    I think it is great that you are so honest with your feelings and that you own your feelings. It is refreshing!

  2. Mike Olbinski
    June 30th, 2009 at 6:57 am #

    Still praying for you guys…always.

  3. Josie
    June 30th, 2009 at 7:15 am #

    Such hard and broken words to write and feel, but they are also so beautiful and full of Truth. Your faith amazes me. I know you question and are jealous and fight, but ultimately you still hang on to God for your answers and your trust. You are an inspiration when you least expect it… We will continue to pray for little Claire.

  4. Gina
    June 30th, 2009 at 8:22 am #

    We love you Nicky, Adrian & baby Claire. We continue to pray for you all. I will be praying for Claire’s appt today.

  5. yasmine
    June 30th, 2009 at 2:31 pm #

    Praying. Love you lads.

  6. liz o.
    June 30th, 2009 at 8:46 pm #

    I hope you get some relief soon. I think you are such a wonderful and strong mother to that baby girl…I can’t imagine what you have been through. I’ll keep you all in my thoughts and pray for some good news.

  7. Kavita
    June 30th, 2009 at 9:46 pm #

    i’m lost for words and yet full of emotion for you and your family. you are all incredibly strong and even when it gets so tough, you keep going. you keep trucking on. you are a hero nicole and so is little Claire. adrian too. good things will happen and if you ever lose hope for a second, it’s ok because you can lean on our hope to get you through that moment. love you lots.

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