Writing a Will.

**Disclaimer**:
This is a depressing post that may have some statements that could offend others. Please read with caution and as much understanding as you possibly can muster. Realize that this was written by a mother who loves her child more than she loves her self and that fears for her future every waking moment of her life.

So Allen and I have said to each other many, many times that we need to right a will.

We do.

Why have we avoided it like the plague you ask?

Well because when you are the parent of a special needs child, writing a will is enough to send you into total panic mode.

We talked about it in length last night while we were laying in bed.

Of course the biggest subject is what would happen to Makily.

The thought of her on this earth without Allen or I nauseates me.

Don't get me wrong, we have a ton of friends and family that love Makily dearly and that I would trust her with. In the end though NO ONE will do things like I do them or be able to connect with MY Makily like Allen and I do.

Is this about control?

To an extent for me it is.

Let's face it, I can't STAND to watch Allen do Makily's hair (when in reality I should thank my lucky stars I have a husband that WILL DO Makily's hair). It's not that he does it wrong, it's just not how I do it. Same with the way he gives her meds, sets up her bath etc etc. It's NOT wrong by any stretch of the imagination but it's not my way so it irks me. I have come a long way in the past four years though. I have learned to keep my big mouth shut and let him do it.

Even some paid professionals have made catastrophic mistakes with Makily. How on earth could I trust that she would be watched over like a Hawk when I am gone? I watched one nurse fumbling all over the place once trying to give Makily medication into her "balloon port" on her G tube. I quickly pointed out that was the wrong port. If you have been reading my blog for any length of time you will know all the lovely mistakes made at Shands Childrens Hospital too.

SCARY!

Of all the things in my life that torture me, the thought of my girl sitting alone somewhere in a "home" is the worst. What if she is just left to sit in a chair and stare at a wall all day? What if they don't feed her right or keep her clean?

Most of all what if she is not loved and what if she is lonely and sad.

The what if's go on until I am a hysterical, crying mess.

Like I said before we have family and MANY friends that love and adore Makily. I have to be brutally honest with myself though. Asking someone to take care of her after Allen and I are gone is a HUGE, life long responsibility that will NOT get easier. It will be forever.

I vividly recall the feeling I felt when I as her own mother realized the "foreverness" of caring for Makily.

I would be lying if I said it didn't scare the crap out of me and depress me down to my toe nails.

Let's face it wiping the butt of a 20 year old is not something one looks forward to.....

.......but it's my reality.

The reality that most people never have to or want to think about. It's easier to live in their cookie cutter, normal lives with blinders on (and yes that is me being very bitter that I had my blinders taken away four years ago).

It's the reality that I would be asking someone else to willingly take on.

That's a TERRIBLY hard thing to ask.....even if it's your own family member.

So when Allen and I discussed this I couldnt help but think of this story:

CLICK ME TO READ THE STORY

I can imagine the desperation that must have been going through this man's mind when he did what he did. Was it the right thing to do? Probably not, but I understand why he did it, and my heart breaks for his family.

This story also came to mind:

CLICK HERE TO READ THIS STORY

I actually saw a documentary on that story on MSNBC. They interviewed the mother and I sobbed while listening to her life's story. Her husband had Huntington's and she cared for him until she physically could not anymore. He died a horribly long, painful, slow death. Can you imagine as a mother KNOWING your two sons would meet the same fate? Can you imagine your sons BEGGING you to not make them live that way, that when they became that sick to please help them end it?

The weight of that must have been unbearable.

She looked much older than her years and like the saddest person on the earth.

I am not saying that suicide or assisted suicide is the answer to this type of problem AT ALL. I just want to show how lonely and scary it can be for a parent of a special needs child. I want to show people the side of parenting most people never see.

The quiet reality that many parents face and never talk about.

Allen and I are still undecided of what to put in our will about Makily. As awful as this may sound I actually told Allen that I don't think I could rest in peace knowing Makily was left on this earth without us. There is a part of me that prays the Lord takes her before Allen and I. While it would likely kill me, I would know that she was okay once I was gone. That she would only know love, never be lonely or sad and that she was always taken care of and never abused.

God will somehow send us the answer. We just have to wait and pray.

Life is hard.