July 27, 2007

July 26, 2007

When I was pregnant with Jessica, I used to dance around the apartment, singing this song full blast to my baby Girl. Today, she is almost 6yrs old and we still dance around the room to this song. Now she has 2 younger brothers that Join us. I love this song and pray this for all my children.

I Hope You Dance
BY LeeAnn Womack

I hope you never lose your sense of wonder
You get your fill to eat but always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty-handed
I hope you still feel small when you stand beside the ocean
Whenever one door closes, I hope one more opens
Promise me that you'll give faith a fighting chance
And when you get the choice to sit it out or dance

I hope you dance, I hope you dance

I hope you never fear those mountains in the distance
Never settle for the path of least resistance
Livin' might mean takin' chances, but they're worth takin'
Lovin' might be a mistake, but it's worth makin'
Don't let some hell-bent heart leave you bitter
When you come close to sellin' out, reconsider
Give the heavens above more than just a passing glance
And when you get the choice to sit it out or dance

I hope you dance, I hope you dance
I hope you dance, I hope you dance
(Time is a wheel in constant motion, always rolling us along
Tell me who wants to look back on their years
And wonder, where those years have gone)

I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you'll give faith a fighting chance
And when you get the choice to sit it out or dance

Dance, I hope you dance
I hope you dance, I hope you dance
I hope you dance, I hope you dance
(Time is a wheel in constant motion always rolling us along
Tell me who wants to look back on their years
And wonder where those years have gone)

July 22, 2007

Welcome To Holland
poem by Emily Perl Kingsley

"I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this....

When your going to have a baby, it's like planning a fabulous vacation trip-to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!" you say. "What do you mean Holland? I signed up for Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.

So you must go out and buy new guidebooks. Any you must learn a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there a while, you catch your breath, you look around....and then you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away....because the loss of that dream is a very, very, significant loss.

But....if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things....about Holland."

July 21, 2007

Dear Loved Ones Please Pray For Our Hunter

Our Dear Hunter is really sick right now. He is worrying his mommy and daddy so much. He is severely constipated. He is refusing to eat due to his inability to poop. He normally eats all the time and is already underweight. This has been going on 2 weeks now. He has lost so much weight. The normal meds to help him poop are not working.
I would take him to his GI but he stinks. We have talked to his Ped and she is telling us to wait and see if the meds eventually kick in. I changed him into his pj's tonight and he is all bone. I am not sure how much longer his body can take this.
Please pray because we are very scared for him!!!!

July 14, 2007

My Last Two Weeks Have Been Rough

Since this is my blog. I am going to let this out.
Yes, I am actually going to talk about myself.

Last week, my legs became swollen and my pain has increased exponentially. I keep trying to fool myself and everyone around that I am Ok. The truth is I am not. I just don't want to bother, stress, or upset anyone. My Multiple Sclerosis is getting worse.

I am not sure how much longer I will be walking. I can't even walk ten minutes without screaming agony. I am having trouble standing up, my legs are a lot weaker, the numbness is getting worse, I keep loosing my balance, I am having trouble getting into our van, my legs shake, and I am having trouble moving them.

Today, my friend Danielle and I took the kids to a little girls party and after two hours I needed to go home. I took a pain pill when we got home and slept for 5 hours. What is sad is that I took a pain pill before we left. I used anything I could lean on to hold me up. Smiled my smiles, chatted, and acted happy. When all I wanted to do was collapse. I was praying the whole time I wouldn't make a fool of myself.

The only one that really knows how bad I feel is Ryan. He reads me very well. He can look at me and know when I am toughing it out. He will find me a seat and finish up what we were doing without me even asking. He will then rush me home and help me to the couch. I may be smiling but he sees the white ring around my mouth and know I am actually in severe pain.

Friday, I actually called my Primary Dr. and scheduled an Appt. to see about getting a scooter. I finally realized that my walking days are nearing an end.

Ryan told me Friday that he is very worried about me. He talked with our friend Jimmy about the fact that he just doesn't know where our life is taking us. Ryan told Jimmy that he does not know why he was chosen to have a wife and children with disabilities. Ryan told me that he loves me and is in it for the long run but it is hard to see my go through this.

Ryan wasn't sure about going camping next weekend with the kids. I told him that this will probably be the only summer with the kids that I will be able to go camping with them. So we have to go. I want them to remember this. I need them to remember this.

Thanks everyone, I just needed to get this out.

July 8, 2007

That's Not Normal!!!!

If one more person says to me,

"You know,
what ______(insert one of our children's names in the blank) is doing/acting/exhibiting either behaviorally, physically, or health wise is just not normal!",

I am seriously going to loose it!!!!!!!!!!!!!!!!!!!!1

We have been dealing with our children's behavioral and health issues since they were born. So why do people, mostly family feel that we need to be informed of issues we already knew existed? Of course we know, we are with our children constantly. We know our children!!! We may just not want to talk about what is going on.

I am tired of people telling us that we have to advocate for our children. If they really knew Ryan and I, they would know that we have always put our children's needs first. We are constantly fighting to get our children help.

Telling us that we need to fight the doctor's/specialist's/insurance more does not help us. What it does do, is it makes us feel like crap. That the consensus is that we are not doing our job. When in fact, it is the Insurance that is failing our children.

I just wanted to inform you all. That if you are reading this blog, I am not talking about you. I allow you read this blog, because I only let smart people, who understand how we feel, know that I even have a Blog.

Thanks All, I love you!!!!!!!!!!

July 3, 2007

Why Matthew, Lord???

It is 4:50 am and I am sitting here having a good cry. Matthew is having a harder time walking. Whatever is going on is now affecting his left side more. I didn't want to upset our family, so I waited until everyone is asleep to have my little meltdown.

I am trying to give it to God, but I can't help but question God's purpose in all that is going on. I have a hard time believing that God would let a small child suffer like this. Why isn't he intervening?

I know, I know, it's kinda sad that we blame God when something bad happens. I guess it is because we need someone to be the scapegoat for our pain and anger. I don't want to use God as my scapegoat. I just want Matthew to get better.

My heart is breaking for my little guy. Besides the walking problem, he seems more uncomfortable every day. He is no longer my happy little boy. I fear that whatever is going on with him is causing him pain. I hate that he is in pain and I can't do anything to help him.

I am praying that a neuro can see him soon. The UC Davis Pediatric Neuro has a 6 to 9 month waiting list. We asked the Ped about sending all three children to Lucille Packard Children's Hospital to see a Neuro there. He was not sure if our insurance would pay for it.

Would you all do me a favor? Could you all pray that our insurance decides to let our three children go to Lucille Packard Children's Hospital for services. LP is the best Children's hospital in Northern California.