Monday, July 19, 2010

raw

Seizures returned tonight.

sigh.......


Emily had gone over 3 weeks with no seizures, just lots of spasms.

It was nice. Nice to not have to count seizure after seemingly endless seizure.

I got to get out of the house for a day, I almost put my guard down. Almost.....

I watch Emily like a hawk. Every movement every twitch and eye flicker. I watch other people kids for seizures. I look at kids in the grocery store afraid one of the will have one.

It sucks. Their is no other way around it. It's not fair.


It's not fair to watch her not develop with other babies her age. It's not fair that she slept through her birthday party because she could not process all of the noise. It's not fair that I have to sacrifice any sleep I might get to watch her because the seizures have screwed up her sleep cycle and during the day she has therapy 3 days/week. Today , even with a nurse, I got woke up 3 times with phone calls for appts, testing, insurance.......

It's not fair that people have removed themselves from our lives. I have very little family support. Those who do help us financially and emotionally we are incredibly grateful for and they know who they are. Our church has been a HUGE source of help, honestly we would have lost everything without them.

Others are just too busy with their own lives. I get it but it is still just not fair.

I am not good. If you ask and I say yes I am lying. Things are ok, I am just ok. Most day are good enough and we do get by. Some days are easier than others. Days like today not so much. One day I will be good. I know I will, just not today.

I know to some I sound like an whiney ungrateful brat but this is how I feel. My emotions are raw and I am just being honest. Things tonight are not ok.

Tomorrow is a new day blah blah blah I know but right now I can't stop crying. I hurt for Emily. I hurt for me and Joe.

45 seiuzres in and I am praying they will stop soon.
I debated posting this. It was very theraptic typing it all out. Maybe it will give someone else the nerve to be honest with themselves too.

9 comments:

  1. Erica, I keep you all in my prayers all the time and I'm being honest when I say I wish I could help Emily get better for i love her so much and you all! I know there are days when ya just feel like giving up but the Lord it says will not put more on us then we can bare and it isn't right no that you all are having this hard of time! If ya wanna just talk right now to someone call me k? I can actually feel pain from ya and I hate it but i love you all so much and ya know I do! Loretta

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  2. Dont ever feel like you are "Whiney" for saying how you feel... you have SO MUCH in your life that's not fair...

    & you may not think you do - but you handle it with such grace & strength!!! You are amazing - in so many ways... You are a mom who hates what is happening to her child - ALL the things that is happening to your child. Not one thing wrong with that...

    I love you friend...

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  3. Don't feel guilty for feeling the way you feel Erica. I am glad you were able to get it out and share it with all of us. We love you and think of you so often.
    This made me cry. My heart swells for your family. We are praying, and will keep praying.

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  4. Erica... I can't even imagine how you must feel... and i agree with Bec... you have been amazing to watch as you have handled so much... and I know you do see what a "strength" you project to those around you, but you do... and letting it all out... that's okay, that isn't a sign of weakness, or "whinny" it just says that you are grounded in reality, and that is necessary to survive!!! Love you...

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  5. Don't in anyway think you appear to be whiney. You're going through hard times in your life and you have every right to vent, complain, and even cry. It is not fair to you all in any way that you've got to live through this junk. I watch other kids and adults too. You never know when one might strike. We are praying and please don't ever think of apologizing or think that you are doing anything but being totally raw and honest! It helps others to see just how REAL a person can be.

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  6. Dear Sweet Erica & Joe,
    I told Lynn last night that you have both been so amazing through all this; your first baby and being young parents should bring you such joy and not pain. I know she is the JOY of your life, and you are so right; this is not fair, all this pain. However, you have taught so many people that your faith gets you through all this; and soooo many people need to see that love and caring and perserverance and grace. You both have been amazing at sharing that with us, even through your tears. Please don't feel that you are ever alone. I wish I had the skills to help you all, but the prayers and love are all I have. Sometimes I feel like because we're older than you guys, that we don't seem like close friends like some of the others around you, but know that we love you and think about you all the time. It really is good to cry and let it all out sometimes. If there is ANYTHING that you can think of that we can do for you all, please do not hesitate to ask. WE LOVE YOU ALL! Vicki & Steve Meredith

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  7. Joe and Erica,

    My heart goes out to you. I echo all of Rebecca, Lynn and Vicki's comments. You two have been amazing. I cannot even imagine. Your faith have been a testimony to those around you (even though I know you wish you did not have to go through this). I am not skilled but can certainly bring supper or come for a visit. I always hesitate because I do not want to interrupt your little bit of sleep. But call and I will be there to help. We love and miss you all, Kelly Groves

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  8. Erica, you have every right to feel the way that you do. After Emily doing so well in the past few weeks, this setback has sent you spiraling back into the fear, upset and helplessness you felt before. Never be ashamed of your feelings at any time. You have every right to feel this way. Life can be SOOO unfair! You and Joe are the strongest young couple I have known. Other couples who are going through this take it out on each other. I see you two hanging in TOGETHER and turning to God for your help. This is why I can say so confidently that you will get through this and be one of the most amazing testimonies to God that ever was. PLEASE if you need me and Jeff for ANYTHING at all, DONT hesitate to call us. WE ARE HERE FOR YOU!
    We love you with all of our hearts,
    MOM and DAD JOHNSON

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