Not in Control

Sorry for the long silence. Things here have been busy. First off, we have had strep and various other germs plaguing our home. There have been fevers and snotty noses, antibiotics, the humidifier being rotated from room to room, breathing treatments, vomiting(maddox), etc... oh, and we've been potty training Tracen (we must be crazy). I've spent countless hours on the phone making appointments, confirming appointments, rescheduling appointments, refilling prescriptions, hunting down doctors to fax in prescriptions, calling to see if prescriptions are ready since we only have one dose left for the day, when we need three, etc...

You get the picture.

(don't you love the hospital masks)

We also found out this week that Maddox is even more unique than we thought.

Oh Goodie!

Maddox has an extremely rare, or possibly never seen before thyroid condition.
The whole family will be getting blood drawn and tested to try to help give the doctors a better picture of what we might be dealing with.
If you had seen my oldest get his throat swabbed for strep this week, you would know that we might very seriously discuss sedating him in order to get him through having his blood drawn.

Lots of fun!

The thyroid is very important in growth, fertility, and brain development. So, the doctors have been very clear that Maddox will likely have some mental retardation. We already figured that he would have growth issues and would most likely be sterile due to his chromosomal disorder, so those are no surprise. We also found out that he is already slowing down in his growth length-wise and so we'll most likely start the daily shot of growth hormones before
he is a year old.

Guess who is going to have to give him the shot every day for the next 17 years?

Oh, and did I mention that he is going to be getting a helmet in a couple weeks to fix his head shape? Yeah, we are having a great time around here.

This poor baby continues to vomit, a lot. Sometimes five times a day, and it is awful to watch and hear him retch and then struggle to breathe for the next 15 minutes afterwards. I have washed almost every blanket we own this week due to the throwing up.
In the wee hours of the morning one day this week, I ran in to Maddox's room to find Jeff helping him to sit up and clear the spittle from his mouth. He was working to breathe, but as soon as he saw me, flashed one of his big grins. It just about broke my heart.
Mad is seriously such a love, and when he's not screaming from pain, or vomiting,
he is a happy and sweet little guy.

To say that life is a struggle would be an understatement.
Jeff and I both go through days, or weeks, where we are angry, tired, sad, and even apathetic. It is too hard to think about the future, and yet everything we do is done to give Maddox the best future he can have. I really wonder some days what kind of life that's going to be.

I really don't feel like I've completely accepted that this is my life - that I have no control over anything, and in reality never did. It's a hard adjustment.
The only thing I have control over is my attitude, and lately I've used that mentality as an excuse to be angry and miserable. Please don't think too badly of me. I am trying, but the weight of this new life is crushing at times.


I know Heavenly Father has a plan for Maddox. I know his life has purpose and there is a reason why he is here, but I haven't had any strong feelings about what he is here to do. I have struggled with the feeling that sometimes we suffer just because. And yet I know that this life is but a moment. We are here to prove ourselves, and the party is later.
As my dad says, " Nothing is wasted in the economy of the Lord." - meaning that these experiences have real purpose and are not for nothing. They are not the whim of some Zeus-like deity, but the plan of a loving father.
I know Maddox will be healed, but it might not be here.
I guess I just need to remind myself that this life is but a moment,
and all I have to do is endure it well.