Would the WHY of it even matter anymore!?

*Disclaimer: I realize this is a come back post of sorts but it is seriously depressing. This is how I'm feeling lately and I know that writing these things out helps me IMMENSELY. Read at your own risk.*

I wish you could have been born a healthy little girl. I wish you didn't have to suffer and I wish it didn't end this way. I miss you my little Princess. --Roni Hughes to her angel Alayah.

I have struggled a lot the past year with WHY.

Obviously I will always question why Makily was born with Emanuel Syndrome. That is something that I will never understand. I think for me though the moment that I began to struggle with my faith and my belief in god is when I realized that no matter the WHY of it, nothing would ever justify Makily not having the life she deserves.

Even if God himself came down from Heaven and said "Patricia, Makily has Emanuel Syndrome because xyz." It still would not make me feel better.

I would still be angry at him for it.

As a person who was raised in church, that was baptized at MY request at age five, and that has prayed on my hands and knees for years, it's hard to grasp and admit you are angry at God and that at times you don't even know if he is or ever was there.

Just typing that made me cringe and I'm not even sure if I will have the guts to publish this post.

I think maybe I have seen too much. Too much pain, heartache and hurt. Too many INNOCENT children suffering, too many dying as their parents are left here...with empty arms and broken hearts.

The quote that started this post was about a baby girl that died Sunday evening. She was only a couple of months old, had Emanuel Syndrome and never was able to leave the hospital. Her mother was just 18. She handled the immense pressure of having a baby with all of the medical problems Alayah had better than I think I did when Makily was born and I was 26. I watched as Roni matured in what seemed like overnight.

Then Alayah died.

I want to know why God put Roni through that. Why would he allow sweet Alayah to suffer and endure all she did and then take her away?

...and again there is no answer that would justify it in my eyes. I doubt there is one for Roni and Alayah's Dad Thomas either.

My friend and soul sister Stephanie has a daughter Maia with Emanuel Syndrome. Maia of course was born with the myriad of problems that comes with ES. They've been through surgeries, procedures, doctors, illnesses etc etc etc. Maia began having rages and screaming fits for hours on end when she was about 10 or 11. She is now 15 and they have tried many medications to help her (along with the side effects of each medication), she's had MRI's, CT's, blood tests you name it. Stephanie has had doctors accuse her of just not wanting to deal with her "retarded child". Reality is that I have seen videos of these fits and Maia's rages and it absolutely breaks my heart.

They now think Maia has Limbic Rage.

It's basically a disorder in the mid brain caused by what I believe in Maia's case is a lack of oxygen to the brain for a period of time (and with our kids their airways and respiratory system are so fragile at birth they very well have gone without enough oxygen to their brains for periods of time during a crisis). Limbic Rage causes the exact symptoms that Maia has. Rage, screaming, anger, hallucinations, violence and the list goes on and on.

It's bad enough that Maia has Emanuel Syndrome. God...can you explain to me why ON TOP of that she has to have THIS disorder too? Can you imagine what it must be like for Maia when she goes through these rages? Can you imagine how confused and scared she must make herself? What about what it has been like for Stephanie and Martin to watch their little girl go from the happy giggly child she once was to the screaming, angry one that seems trapped in her own mind and body....unreachable.

As many of you know a friend of mine passed away two years ago. Carrie Hammer and I had known each other for years. Her son Brennan was born with severe cerebral palsy. She and her husband Sean dealt with numerous medical complications and hospitalizations. They did it together as team though. They were making the best of it. Then Carrie died in the car accident. She drowned trying to help Sean get the suction machine they needed to suction out Brennan's trache after he had gone under the water after the crash.

Why did God let that happen?

Sean is now left with three children one of which is very medically fragile. I can't imagine the challenge he faces EVERY. SINGLE. DAY. I have the utmost respect for him because he has just kept going. He continues to get up every day and take care of those kids when I am sure there are days he would rather stay in bed and not deal with anything......

....and again I am not sure there could be a reason why that God could give me that would make that situation "okay" in my eyes.

I could go on and on with situations like this. I won't though because it would just be depressing and I think this post is depressing enough as it is.

Great come back post btw huh? Now all my readers will be running to the nearest window and wanting to hurl themselves out of it. SORRY BOUT THAT GUYS, this is where I'm at right now.

I've heard so many smarmy lines since I had Makily. Cliches that at one time actually DID make me feel better.

"Oh your a special person, you are so strong, God wouldn't have given her to you if he didn't think you could handle it"

Bullshit.

How many babies are born to drug addicted mothers? The baby is then tossed into foster care and sometimes are bounced back and forth. Obviously those mother's couldn't handle be mother's to those babies and God gave them to them anyway.

I am no better or stronger than your average person. I am Makily's mother and am only doing what a "normal" parent does when thrown into a situation like this. I had no choice and neither did Allen. It is what it is and we had no option OTHER THAN to deal with it and try to make the best of it. Believe me there were times I didn't want to deal with it and would have rather laid down and died. Thankfully Allen, my family, medication and my love for Makily kept me from doing that.

"Everything happens for a reason, THERE IS a reason Makily has Emanuel Syndrome look at all the lives she has touched and people she has changed".

I agree with this. Makily has touched many people and changed many lives, probably more than I will ever know or be able to grasp in my lifetime. That being said WHY SHOULD MAKILY have to suffer, endure and be cheated out of so many experiences to change someone else? She deserves to experience EVERYTHING that is good in this world and she won't. I was at the park with her the other day pushing her on the swing. I found myself scanning the place for anything else she physically would be able to do. There was nothing. Then I started thinking how I wish I could figure out a way to strap her to me, then I would do all those things and it would be like SHE was getting to experience them (although I'm sure I'd look like an idiot sliding down the toddler slide with a six year old strapped to me). I suddenly realized how sad and depressing that thought was and had to fight back tears.

So my friends this is one of the reasons I have not been able to write. I prided myself for so long on being able to be positive (mostly) about Makily's having Emanuel Syndrome. I wanted to help other parents see the good side of things. For a while now though, I just have not felt that I could BE the positive inspirational person I wanted to be. I can't pretend to understand and be okay with all these things. That's just not me.

Maybe writing THESE feelings out though will help someone else and maybe someone will say something in response to this entry that will be a light bulb moment for me.

I don't know.

I doubt it.