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Saturday, April 23, 2011

The Day Life Changed Forever

First, I want to say that I would like to go back to the posts where I am complaining or poking fun at Leo. I would even welcome posting about the chaos that my kids cause. I would give anything not to post about this but I don't see how you could understand where I am coming from if you don't know where I've been.

Second, I refuse to name this post "Things that Shaped Me Part 4: Cystic Fibrosis. Even typing it makes me feel a little sick because it might have changed me but it will never define me.

On July 16th, we took Nico, who was 3 1/2 at the time, to Children's Memorial for the sweat test to "rule out" Cystic Fibrosis. They put gauze on both his arms and taped them and we had to wait a few hours for them to remove them and measure the sodium levels. Kids that have CF (which is how I will refer to it because I hate the actual name) have high sodium levels. I still lived in the land where bad things only happen to other people so I thought nothiing of Nico doing the test. It didn't even register that my child was being tested for something that had no cure. That was all I knew about it. I was assured by two doctors that it was going to be asthma which I had and so did Leo so I figured at the very worst, he'd have to have an inhaler. Looking back, I was so dumb. I had a very good friend whose twin boys passed away and I was worried about her so I would check how she was doing on the loss message boards of the website I frequented. I remember thinking how strong she was to have survived losing her sons. My heart broke for her because what was worse than burying your child?

I remember exactly where I was when I got the call. It's impossible to forget the moment your life changes forever. I was in the basement on the computer chatting with Leo over the instant messenger. The doctor sounded like she was crying and that she herself was in disbelief. She was talking and I stopped listening. Something about having to call a doctor at Children's Memorial. Something about needing to do it right then and that she was sorry. She said more but the only thing I remember is typing to Leo, "He has it. Come home." Do you believe that? I told him over the instant messenger. I made his life-changing moment in an IM. As if on auto-pilot, I called and made the appointment. The woman said we had to come the next day. Before Leo could call me, I looked it up and all I saw was "life-shortening" and "fatal" and I started sobbing. Nico was upstairs watching Tarzan for the 100th time and so he wouldn't hear me, I buried my face in a pillow. Leo called and I sobbed for him to come home. I called my sisters and all I could cry was, "He has it." My parents were out of town and I remember wanting them to come home and tell me it was going to be okay and they were wrong. I stayed in the basement until my sisters came over. Luckily, Nico had a big supply of juice and goldfish crackers and didn't have to go to the bathroom until they got there so he didn't even notice that I wasn't upstairs.

That day was a blur of people coming over. I didn't know how it was possible. I remembered a time when Nico was a baby and having a formula issue (he had reflux and wasn't gaining weight) and I was changing him and I remember asking God not to take him from me. I have NO idea what would prompt me to pray that. Mother's intuition? Nico walked at 10 months and talked at one and I remember asking my sister if God was letting him do things early because He was going to take him from me and He wanted me to get to see him do those things? She shrugged it off saying I was crazy but on that day I wondered again if that was true. (If that really is true, Gia will be with me forever because she walked really late and still isn't saying much.)

I didn't sleep at all that night. When I finally did, I dreamt that I was in Barnes and Noble picking out books that on the sides had one title but on the front had Cystic Fibrosis written on it. I would throw them down and yell, "I don't want this!" Explaining to Nico what was going to happen the next day was one of the hardest things I have ever had to do. I knew that they were going to want to run tests and I was scared and I had to act like I wasn't. I didn't want him to be scared. My three younger sisters went with me. Two to stay with Nico while we talked to the doctor and one, that was a nurse to be with us because I knew I wasn't going to hear a word they said. I sat in with that doctor and I hated him and I hated the nurses. I hated anyone that believed he had it. I was belligerent when they asked questions. I disagreed with everything they said. Whatever I had to say to make them go away, I said. At one point, I heard Leo agreeing with them and I hated him too. The doctor cheerfully said, "With all the advances, the life span is now mid-thirties." I burst into tears and said through gritted teeth, "Sorry if that doesn't bring comfort to me." He said that he had a lot of women I could talk to that were in my same shoes." I bitterly asked him, "Really? There are other women that are 6 months pregnant with twins that could possibly have this life threatening disease that you just said my 3 year old has?" His answer was no. Nico had to give many vials of blood that day and he was so scared that he wouldn't sit still. Leo had to hold him down and he was screaming to me, "I'm afraid I am going to die! I don't want to die." He meant from the blood test but I cried right along with him because that was my fear too.

I am going to stop here for now. That's enough heaviness for today. I will continue this in Monday's post. Tomorrow I want to do a post about Easter.

4 Comments:

At April 23, 2011 at 2:55 PM , Blogger Chris said...

Oh AM! I remember you telling me...the shock of this news... :( I still wish it weren't true...it was such an awful year for us both... :(

 
At April 23, 2011 at 3:17 PM , Blogger AnnMarie said...

It was an awful year mixed in with a few blessings: our visit, the twins, you getting pg. I hope you don't mind that I referenced you in this. I couldn't help it. They were so intertwined. Just the realization that bad things were closer than I thought (than we all thought).

 
At May 16, 2012 at 9:33 AM , Blogger Kristen said...

Hey. I don't know what else to say except - it's me.. Kristen (ALSFM) ... and I get it. My heart breaks that yours broke. I'm off to read some more, but ... I just want to hug you. And have one back. Because. I get it. And that is the worst part. WHS - they rarely live into their 20's. Ugh.

 
At May 16, 2012 at 10:42 AM , Blogger AnnMarie said...

Oh, so glad you are reading and yes, I wasn't kidding when I said I know. And I know you know. I'd take that hug because it might be 10 years but it still hurts like it was yesterday. I hate that you had a "day life changed forever" day, too.

 

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