January 22, 2011

It's been a very hard month.

As the months, weeks and days have gone by I have lost more of the son I thought I had.

Tonight I put the boys to bed, but Carter cried and hard.
I went and picked him up, I could feel that he needed me...
his body just relaxed deep into mine.
So I brought him downstairs to sit with me.
Carter does this once and awhile, he never cries to go to bed.
I knew he needed me.
He needed his Mom.

Mason rules our life, there's no easy way to say it.
He dictates what everyone does from minute to minute.
Where and how we live, shop, eat and play.

Life is hard for Mason. 
Life is hard for Joshua and for Carter.
Life is hard for Nick and for myself.
This life is not what I thought of "living".
Sometimes I hate that this is my life.
Sometimes I dream about what life could have, should have been.

I do not know Joshua, he does not talk to me.
He lives in stress, fear and wondering.
I have lost him somewhere along the way.
And I am lost trying to find him.

Carter is my baby.
He is the one who I never wanted, the one I was embarrassed to be growing.
He is the glue we needed, we need.
Watching Carter grow, develop, and now communicate even without words...
it brings me to tears.
This is what this is supposed to be.
You are supposed to have a connection with your child.
The kisses are healing for my soul.
Carter has never known a life without Mason.
It scares me to think about how much Carter can actually hear me.

Mason has gotten so much worse.
There is nothing positive to report.
They warned us...
they told us he would get worse.
That he would change and that this wasn't going to be easy.
they warned us.

We never thought it would all happen so fast...
1 month warning.
I find myself grieving...
I find myself sick of my "son".
Sick of his sick.
I find myself guilty for being sick of my son.
I love Mason.
I hate that this is what Mason has become.
I hate the pain that he is constantly in.
I hate this situation.
I long to wake up and for it to be all better.
For us to wake up and everyone be healthy.
For the stress, pain, and the nightmares to be gone.
The nightmares.

This month has brought us to Emergency twice already.
Strangely not for Mason.

Carter knocked himself out...
I will never forget the way he felt.
He did it again today.
This time i was not holding him.
It was only for 15 seconds.
Since having Carter I have had awful feelings...
nightmares about losing him, an uneasy feeling.
It is probably the stress from what we went through with Mason at his ages...
I never realized until just recently just how close we have been to actually physically losing our son.

Josh had to go the Emergency last night.
Josh has asthma and had one of the worst if not the worst asthma attack ever.
For 35 minutes we worked with every tool we had to get his breathing under control.
He was really struggling so we left.
The anxiety that slowly creeps in is unbearable.
We get to the hospital his breathing is way more under control.
We wait to see the Dr. to make sure this isn't going to happen again.
As we wait several newborn babies come through the doors...sick babies.
Couple day old babies.
We are sitting with Josh in the same bed...
the bed where Mason was first taken at five days old.
The bed where Mason was found to be barely breathing.

And now there were babies surrounding us... crying there little cries.

Today has been a hard day.
I can't make myself stop re-living those awful moments.
All the awful moments.
Today, this month has been a hard month.

In four days we will be back in Children's hospital,
in the room where they told us that Mason couldn't swallow properly.
In the room where they told me water could kill my son.
The room where our lives changed forever.
The difference is this time we will be there with Carter.

Please pray they find why Carter also has trouble swallowing.
Please pray that is just from reflux. 
This is the best option.

Josh is really struggling with life, with our life these past few months.
Please pray that he can find peace.
That we can find peace.

Mason needs help.
We need our Respite.
We need Mason's therapy, we need someone to help him.
We don't want to wait anymore.
We have been going for 34 months...
we have waited long enough.
Are you listening?

We are all so tired.

This is what Special Powers can do to a family.

I have hope
We need to have hope.
Because this is not what life is supposed to be.
There is supposed to be quality in life.
Mason has none.
The rest of us don't really have much either.
But I know that this can get better.
We just need the ************ to step up and do their part.

Life is going to get better... I believe this.
This is what I need to do to keep going.
I am believing.


  1. I'm so sorry that your family has to go through this.

    I can't say that I know exactly how you feel, because so far j hasn't had any serious health troubles. But dealing with my son having Down syndrome is something I never dreamed of. I can relate so much to this

    This life is not what I thought of "living".
    Sometimes I hate that this is my life.
    Sometimes I dream about what life could have, should have been.

    It's okay that you feel all of these feelings. You should never be ashamed or apologize for what you feel.

    You're a strong woman. Take pride in that.

    Praying for you! Hugs!

  2. I don't know what words would be of comfort or encouragement other than I will pray for you. Pray for you, your husband, your boys.

  3. Dana, to say that I am praying for you is an understatement. It seems like nothing in the face of the challenges you face. I pray for you, your husband, your marriage, your boys, your mind, Mason's mind. I pray for a miracle to happen. If we were closer to each other I would offer support in physical ways. But being 1000 miles apart, I pray. I pray!

  4. I don't know a whole lot about you or your family, but I will say this... I have been seeing A LOT OF PEOPLE fighting spiritual warfare of late. Stay in the Word of God (Bible). Read Eph. 6: 10 and following. Know that people are praying for you and NEVER give up hope.

  5. I am sending you and your family lots of love. I wish i had the right words to take your anxiety away but you are an amazing mother to ALL your boys. I can't imagine how exhausted you are but please know that you will all get through this. I am here for you if there is anything i can do. Sending you lot of love ♥

  6. I came to your blog by way of NSJM. I can't stop reading. I am sending you lots of prayers and love.