Making memories one day at a time.......and then I write about it.

Sunday, August 3, 2008

Denial.......I'm real good at that!

I prefer living in denial. Life inside Rachel's bubble where everything is bliss. Every once in awhile I am forced to actually open my eyes and then I scream like a spoiled two year old clenching my fists and closing my eyes refuse to look life in the face......until something comes along and pops my bubble but I'm real good at constructing it again and then I float along blissfully........until the next "pop"!

We were supposed to go to Chicago in July to an AHC family meeting. (AHC being what Levi has. ) But, I got sick and everything was cancelled. I've been waiting to hear/read notes that were taken by those who were able to go. Still in that denial thing I didn't think I'd read anything that I didn't already know......or would apply to us because.......Levi is doing well so he's different. He is somehow going to outgrow this right? And everything we've been through with him is going to be "remember how difficult such and such was...........ya.......glad that is all in the past......"

Some of the families who were able to go have been posting their notes that they took on a website for AHC families and that is when the first "pop" came. I read something that didn't appeal to me but I'm really good at that denial thing so I was able to build up my bubble again. The notes kept looming in the back ground but I'd quickly shove them away knowing that I needed to tell my husband what I'd read and Scarlett O'Hara.........we understand each other. Tomorrow is a better day.....

Tomorrow came and I relayed the notes to Brian. Not really new to us but still a slap in the face when you see it in black and white. Levi is six years old. Right now life is pretty good. He seems to be able to handle things pretty darn well. He hasn't had an "attack" for a year now........we're gonna beat this right? Read the fine print........around the age of 8 or 9 is when the epilepsy starts with most of these kids...........

Well......ya.........Levi has seizures now.........but they're at night while he is sleeping.......and he is doing so well.........hurry! Build up that bubble!

The next "pop". From my husband. Not the first time he's told me this but it makes my heart slam into my chest real hard this time.

Brian: I keep getting this strong feeling and impression that we need to video tape Levi when he is doing "normal" activities. Riding his bike, playing, talking, etc. I don't know why but the feeling is really strong. Maybe it is so that when he does have episodes the doctor's can see what he is like normally.

Rachel: (heart slams into chest thinking to herself: It better not be for us as a remembrance of how Levi "used" to be.....or how he was when he was alive........)

Must build that bubble and walls again real quick because I so do not want to go through the grieving process again....I'm too tired.......besides.........look at him! He looks too good! Denial. Denial. Denial! Must........keep...........working.......denial.........muscles.......


  1. ohhh don't worry Rachel! Everything will be ok.... We will always keep you guys in out prayers.

  2. Rachael,
    I am a parent of a soon to be 6 year old girl, Lili, that has AHC. We went to the conference and it was an emotional roller coaster ride! I understand where you are coming from in the blog as Lili has lost skills so many times. I am like you in sometimes not wanting to video her or take pictures. With that said, God has given us these children for an amount of time and no matter what, she is a blessing from above. We have to remember that God is in control and that we can rest in Him. We can celebrate today for what He gives us today and just today. Tomorrow is another day. That comforts me so much. Thank you for putting your thoughts/feelings in here! It truly brightens my day:0)

  3. rachel! my heart goes out to you. i cannot imagine the amount of pain you are fighting off. you are very good at making everything lighter than it really is...oh, i will make a horrible goddess someday...i would take this pain away from you in a heartbeat. in half a heartbeat. if we could only let the savior fight our pain and fears....

  4. I think that denial is a healthy tool sometimes. Youguys are definitely in our prayers!

  5. I figured out why you dont see my updates, its because my blog is private. I know this because I tried to add my friend to my list and her blog is private and it said because of that you wont see if they update or not. bummer!! My blog wasnt always private which is why you could see it before. What is your live feeds??

    ps. I just have to say you go girl. You are so strong with all those kids on top of your many illnesses! We are here for you every day, day or night. :) that is what family is for. love you!

  6. Angela - what a lovely post. The two of you are dealing with something that is unbearably difficult, and yet, your spirits are buoyed up by your faith and your love. I wish we could take your pain and stretch it out like a tent covering so that everybody who loves you could carry a little part - shared together, it would not be too heavy.


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