Saturday, March 31, 2012

I need to figure out what my plans are with this page. I rarely have the desire to blog anymore and I know that I should. I need to start making a conscious effort to write here a couple times a week. There are so many funny things that happen that I do not want to forget.

Thursday, September 22, 2011

With a heavy heart...

I am just so sad. My heart is heavy and I cannot believe that someone whom I loved so dearly could be so mean to my child. If you are going to be a brat to me, that is fine. But lay off my kid. I ask for VERY FEW considerations for my children. I ask that if during dance classes that they need to lie down on the mats out of the way an observe, that they are allowed. I also ask that they be able to drink fluids as needed to prevent dehydration due to their shunt. I warn teachers when there are bad brain days. I explain that the headaches are bad and that their brains are processing slowly. We have a person in our lives who is being quite mean about these things. I have explained that past few weeks that Wednesdays are hard days for Gabe. That I have to wait until his shunt is exhibiting that he has high pressure before I just reset him. Just because he was at the school does not mean that his shunt reset itself. The past 3 weeks it has. It is a pretty consistent trend that I need to, but just to randomly reset his shunt because he was exposed to magnets is not a prudent thing to do.

I am tired of fighting for the few things that I ask for my kids. I am sorry that it takes Gabe too long to drink his water sometimes. I am sorry that his pressure on his brain is so high that he gets easily distracted or that he is sometimes so to respond or react to your command. It is not okay to tell my child that he cannot get a drink of water during "warm ups" when he has already warmed up for 2 previous classes and he is miserable and trying to push through classes. It is not okay for you to make my child feel badly about his health because it is inconvenient to your schedule.

My heart is broken. You are going to school to be a health care professional. Try to be compassionate.

Living with an Invisible Illness

LIVING WITH AN "INVISIBLE ILLNESS"
written May 2003
While from the outside I may seem normal,
It’s the part that you can’t see,
The constant pain and struggles within,
Are ever so apparent to me.
Although I may wear a smile,
Often times it's covering the tears,
Yet not tears because of sadness,
As it often may appear.
Don’t be too quick to judge though,
Because there is so much more than is known,
What may seem to look like one thing,
Just might turn to prove so wrong.
I may sometimes seem unfriendly,
Or too centered around self,
Because sometimes standing takes all I’ve got,
And there is just no energy left.
Sometimes my words may sound awkward,
My communication may not always convey,
My true inner thoughts and feelings,
Aren’t always expressed by what I say.
You may think that I’m not really listening,
Sometimes my face or speech may not show,
But I do hear every word you say,
I really want you to know.
The information doesn’t always process,
As quickly and as clear,
And sometimes it takes me longer,
To interpret what I hear.
I possibly miss many opportunities,
To offer needed love or support,
Because sometimes it just takes to long,
For my thoughts and words to sort.
So if my actions seem inappropriate,
In the things I say or do,
I hope that you can understand,
That it is not because of you.
There are times I get discouraged,
When forced to accept my inability--
It’s hard to admit my limitations,
And it leaves me feeling so guilty.
Yet every moment is a reminder
As I look all around,
The effort it takes just to get through the day,
Just picking my feet up off the ground.
I am not looking to find pity,
I am just attempting to explain,
That the person that you may often see,
And the real me aren’t exactly the same.
You may not see the peace and joy,
When you look upon my face,
But I know that each day I live,
Is because of God’s amazing grace.
It is hard to always be cheerful,
When the pain is so very real,
And not everyone can comprehend,
The extend of how I feel.
I don’t see it as all bad though,
Although I’d much rather it not be so,
But I know that if I must endure,
God will strengthen me as I go.
It may seem as if I take no pride
In the way that I look or dress,
However, there might be much more going on,
Inside of the big mess.
My home may not be nice and neat,
My bed not always made,
The laundry may not all be done,
And often it makes me ashamed.
But I must only do what I am able,
Each day I have to choose,
What is most important right then,
And the tasks I am able to lose.
All the plans and dreams I once held,
Now don’t seem quite so clear,
Yet I feel a peace within,
As my Lord keeps drawing me near.
To have a chronic illness,
Or a disability that one must bear,
Somehow puts life into perspective,
And helps to make us more aware.
I realize now that each day I live,
Is a gift from God above,
It is hard not to lean on Him,
Or to look to His great love.
I now can fully understand,
On my own, there is nothing I can do,
It is only be faith and prayer,
That I can make it through.
It may seem an exaggeration,
No one can always feel so bad,
But only those who have walked in these shoes,
Can appreciate the battles that I have had.
I see so many people less fortunate than me,
Don’t have to look very far,
There are so many suffering all around,
It doesn’t matter who you are.
Circumstances and illnesses can hit unexpectedly,
And you can never really be prepared,
It may be difficult to understand,
Leaving you vulnerable and feeling scared.
I must constantly guard my thoughts and mind,
As Satan always tries to bring me down,
He wants me to feel hopeless and unworthy,
And turn my smile into a frown.
It is hard not to get depressed,
When I see the burden my family must bare,
The fact I cannot always meet their needs,
No one could be more aware.
There are times I feel like giving up,
When I look too far ahead,
But I know if my loved ones were given the choice,
They would just choose to have me here instead.
There are so many ups and downs,
New challenges each day,
I must strive to keep my eyes on God,
So that I be not led astray.
It would be so difficult to cope,
Without God, my hope would all be gone,
Because through submitting to Him in prayer,
Is when my weaknesses are made strong.
So when you see the way I look,
When my insecurities are in view,
Base who I am on what’s inside,
Not by the things that I can do.
The greatest lesson that I have ever learned,
Is the reason that I am here on earth,
Is not to live for self and gain,
For in these things are not my worth.
God has a purpose for my life,
Although the details I may not see,
He still has it under control,
And is continually watching over me.
Maybe one day I will be well,
And my health He will restore,
But if that is not in God’s will,
I will still praise Him ever more.
If this suffering can bring honor to Him,
I will gladly accept the call,
Because of His great love for me,
He suffered and gave His all.
I have to believe that what I am going through now,
Will somehow work together for good,
And one day it will be revealed,
And all things will be understood.
While I still worry about what you think,
More the example that I may show,
I am learning so much more each day,
And this has really helped me to grow.

Tuesday, April 26, 2011

Leaving...

Today I will finish packing, load up my girls stuff and drop them off at Auntie Becca's house. My Mom and Becca will be keeping the girls. It will be a busy week for the girls and my mom and becca. But they always work it out. The best part is that when I get home they always say, "I just don't know how you do it!" That is a pretty awesome thing to hear. :)

Emotionally Gabe has not been doing well. He is not happy that he needs this surgery. It has broken his spirit a wee bit. He is frustrated and just wants this to be over. The hardest part is the fact that he knows that he is going to have to do it again. We do not know how many more surgeries he will need until his brain has enough room to adequately grow. According to his CT from 1.5 weeks ago, the brain had expanded and had nearly filled the cranial vault capacity. While this is good news....the fact that we were only 6 weeks post the end of the distraction process was a bit disheartening. I know that God is in control of this, I just wish we had a more clear answer of how many more surgeries he will need. Pain wise, Gabe's pain is out of control. It is horrible. But he continues to push through. He is an amazing young man.

I am hanging in there. Last night was a rough night. The guilt of leaving the girls was ringing hard in my head. It makes me so sad to leave them. But I have to keep the stiff upper lip and just get through this and make is as easy for the girls as I can. Today will bring tears from Hannah and Fayeth. This is always the hardest part. Even though I am leaving them with Auntie Becca, Hannah is going to clingy to me and sob. I will pry her from me, kiss her and walk away with her crying. My heart breaks every time. Fayeth will cry because Hannah is crying. Lindsay will be strong and be the champion. She will console the girls with Aunt Becca.

I am getting exhausted from this journey. I always have the strength to move forward because of God, but the emotional aspect of this is just so exhausting. I am quite frustrated. 6 surgeries for craniosynostosis. Seriously, he is a single suture with no syndrome. This should not be where we are at. But I thank God that he has given us good doctors, a great hospital, great support staff at the hospital and a marvelous family that will help us through it.

I will try to post updates as often as I can.

Sunday, April 10, 2011

95

A little sad and depression to write....but we were in the hospital 95 days last year. I understand for some that is not a large amount. But for MY family it is. For my small little people that is 3 months. Wow! That is enough to make one very sad. :(