I want more.

*Disclaimer:
This post is going to be incredibly depressing. I suggest if you are PMS'ing or just having a bad day in general to pass this one up and save to read for another time. I need to get this stuff out before it eats me alive.

I want more.

It sounds incredibly selfish doesn't it?

Well sometimes Mommies are selfish.

The other day I was on the phone with my mom.

I was talking to her about how much I hate the way things are for Makily.

My mom is ALWAYS positive and hopeful when it comes to Makily. SO MUCH SO that even when she had her grand mal seizure back in 2006 my mom insisted everything was fine. Now picture it, Makily lay in front of her in the emergency room, intubated, sedated with enough meds to knock over a horse, STILL SEIZING with all these meds in her and my mom continued to look at me saying "Makily is fine". Granted that particular time she said it with tears streaming down her face and fear in her eyes. She still insisted that Makily was just fine.

This memory makes me cry by the way.

So anyway I was having the "woe is me" moment on the phone with my mom last week and she said something she and others have said to me before.

"It could be so much worse".

That's true it COULD be so much worse, but ya know what?

It could be a HELL OF A LOT BETTER.

So at this point I went off on a tangent about all the things that could be better, the longer my list got, the more upset I got until I was hysterically crying.

When I realized that one of the things that I said could be better was that "I want Makily to color" I really lost it. I said "Mom how sad is it that I DREAM of my FIVE year old coloring, do you hear how pathetic that sounds"?

*sigh*

I ADORE Makily. I wouldn't trade her for the world but that does not change the fact that I want to give her the world and I can't. No matter how much money I have, how much therapy I get for her, no matter how much food I cram in her mouth or times I say "mamma" in a desperate attempt to get her to say it back to me, Makily will NEVER have the life that she should have had or deserves.

Makily does not get to enjoy running or playing. She can't go up to another child and play a game. She would be content watching Spongebob and playing with one of her toys alone.

I just want so much more for her.

I look back at myself when I was pregnant with her and think "gee I sure was oblivious".

I really was.

34 weeks pregnant with Makily. Valentine's Day 2004.


They say ignorance IS bliss. I didn't know how true that statement was until I had Makily.

Allen and I after my baby shower. 36 weeks pregnant.


In the two above pictures I was literally on cloud nine. My life was perfect. The icing on the cake was going to be when I gave birth to the "healthy" baby I was carrying. My life would be complete.

I had no idea in those pictures that I would find myself desperately forcing a smile for our very first family photos together.

Allen, Makily and I a few hours after her birth before Shands NICU came to take her away.


I had no idea that the first time I held my newborn I would want to put her down and run in fear of what was happening.



It never occur ed to me that the morning after her birth I would drive 30 miles to Shands to find my newborn like this:



and with no explanation of why she was that way.

In my pregnancy pictures I still see that girl I was before. The blissfully ignorant person who had never REALLY experienced any sort of tragedy or deep loss. I see a person that was happier than she had ever been in her life. I truly did look at the world through rose colored glasses.

I look at those pictures now and shake my head saying "I had no idea what was about to happen to us".

I never imagined back then that this would be the picture of the first day we brought Makily home.



I never would have believed that Allen and I would know how to use a G tube by the time my daughter was a month old.

Most of all I had no idea that I would have to watch my daughter in immense amounts of pain.....on more occasions than I can count....and not be able to do a damn thing for her to make it better.



I want Makily to run, dance, play, sing, yell, scream, skip, walk, climb and JUMP. I want her to like to paint, color, glue, cut paper and do all the things a five year old can do. I want her to have TONS of little friends that can come over and giggle during a slumber party until I am screaming at them to go to sleep.

I want Makily to run up to me and throw her arms around my neck and tell me she loves me.

I want the same thing for Allen.

At Makily's last IEP they told me something that I didn't tell anyone. Not even Allen. I kept it in the back of my mind desperate not to think about it or deal with it. I thought if I didn't talk about it maybe I would be able to get through March without loosing it.

Makily has to be re-evaluated because her "developmentally delayed" label can no longer be used after age five.

They will do an IQ test (don't ask how on earth they can do that with a non-verbal child, I have no idea).

Makily's new label will likely be "mentally retarded".

I knew this already, I mean I've read the reports on Emanuel Syndrome, the doctors told us that she would be "retarded" when they diagnosed her. I guess when she was little I held out hope that maybe that would not be true. The older Makily gets though the harder it is to deny. Even reading the word "retarded" makes my stomach churn since having her. I knew what *I* thought mentally retarded was before Makily was born and so I know what people that DON'T LOVE AND KNOW MAKILY think of her.

I want everyone on the planet to look at Makily like I do.

The fact still remains though that if you don't know us, love Makily or follow her story you would look at her and think "that child is retarded".

Part of the reason I started my blog was because I wanted everyone in the world to know what an amazing kid Makily is......even though she is the "r" word. I am slowly accepting that I can't educate the world. I can't change the world's perception of what a "retarded" person is. I can't make everyone understand me or how I see things. Not everyone lives my life. That makes me feel really lonely and sad. I take comfort knowing that their are other families out there that KNOW what this is like. I am grateful for Allen that I have him and that I know he hurts about all these things as much as I do.....he just doesn't talk about them.

So tonight I am sad because I want more for Makily and I can't give it to her.

She will be five in less than two weeks and I will not be looking back at her birth with warm fuzzy feelings. I will always look back at it was sadness and grief. That makes me feel so guilty.

I can't change it though.

Believe me, I've tried.

I love you Makily.

You deserve the world baby and I would do anything to give it to you.