Wednesday, September 30, 2009

Noah

Today I was reading about Noah. I have heard this story again and again. I have even told this story again and again, but today it struck a chord.
Today was a lonely day when it comes to coping with Toby's care. Today felt like one of those "in the boat by myself kind of days." Today was one of those days when I wanted to sit on top of my house and scream out a long list of things I deal with day in and day out. I wasnt wanting to scream in the angry sort of way, but in the please can someone understand this. I am not just talking about the trials and the hard times, but even the triumphs, sometimes especially the triumphs. There are aspects of Toby's care that I don't share with others because Toby will not always be three and I want him to one day choose what he wants to share with people. Even in writing this blog there will be parts of Toby's life that will be a closed book, parts of his life that will be left for him alone. There are those days that making the choice to not share it all can seem incredibly lonely. Not because people don't want to care or might not know what to say, but because people can not know what to say or how to care because they truly do not understand.
Well, back to Noah. I was struck today but the fact that the task God gave him must have been at times a lonely one. In 100 years he did not have one person say "hey, I understand what youre going through. I know youve got to be tired of building and working." He did not have one convert in those 100 years, but he kept going. He kept at the task. I would imagine in those 100 years he wanted to stand on his rooftop and scream at everyone that it wasnt the easiest job in the world to be building an ark and to have no one not just not understand but to not even believe you. Wow! Now that's lonely. Im sure he would have been happy to have someone come along side him and just understand his job. When I say, 'understand' I dont mean a pat on the back, I mean truly just understand how hard the task is sometimes. Or even understand when he got a lot accomplished and had a wonderful day. I know if I had been Noah I would have wanted to give up in the first year, not to mention the 50th or the 99th. I think sometimes we over look the incredible faith and stamina Noah must have had because we are so focused on what happened after he built the ark.
I was encouraged by Noah continuing on for a hundred years doing the task that God had set before him. It's a simple as that. Noah didnt need recognition and someone to understand his frustrations, trials or even the triumphs of his day to day life of building the ark. He needed the grace of God and the power of God.
I am praying today that I will be like Noah. I pray that people will not look at my life and say, Wow, look how great Kari's doing, but will instead say, look how powerful God is in Kari's life.
2 Corinthians 4:7

Tuesday, September 29, 2009

Bring the Rain

I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray

Holy, holy, holy
Is the Lord God Almighty

Mercy Me

Monday, September 28, 2009

Hospital Gowns

The first month of Toby's life was spent in the NICU of Greenville Memorial hospital. It was one of the scariest months of my life. We dealt with multiple surgeries and times when we thought we would get to go home only to be dissapointed again. It was also a very lonely time in my life. There were plenty of times I would drive to the hospital to nurse Toby only to be told that he had just been fed a bottle. Those moments were lonely and frustrating.
Moving to texas one month after getting out of the NICU we ended up with multiple trips to the pediatric ER at Christus Santa Rosa. Every time I would sit in those tiny ER rooms looking at my little baby boy with the ugliest purple hospital gown barely hanging on him. It was miserable.
When I picture kids in the hosptial it's hard for me not to picture my miserable little baby boy in a purple hospital gown with obnoxious teddy bears all over it.
Recently, Jamie (one of the women who truly helped me through all those ER visits with Toby)found out that her little baby Charli (6 months old) had a cancerous brain tumor. This beautiful little girl will undergo numerous trips to the hospital during which she will endure six months of chemo. Jamie is one those mom's whose children seem to always look perfect. When my children are going around with stained up shirts and clothes that don't match she had her children looking adorable in matching shirts and cute khaki shorts. Charli has been the same in the first 6 months of her life. The cutest clothes you could possibly imagine with a matching little ribbon stuck on her head! Not overboard like some mom's, but just always looking cute and put together. Well, all I could picture was Charli in an ugly hospital gown just like Toby. So that's when my ideas stared coming. She needed somthing cute, something pretty she could wear during her days of chemo, but also something practical. So I did what I do. I started sewing. I made her two cute little hospital gowns. One bright green and happy and one khaki with little flowers on it. I sent them off today and hope that they work out well.
Then I started thinking even more. How much I would have loved to take a cute hospital gown with me for Toby in the first few months. Then the wheels really started turning. Was there a way to get hospital gowns out to families who could really use the encouragement? Was there a way to include the gospel with these little packages? I dont know how to start something like this, but man would I love to. I know that in those lonely moments sitting next to Toby it would have been an ongoing reminder that someone was caring and wanting to help in some small way.

That's what I want to do. Help in some small way.

If any of you that read this have any ideas or suggestions. I'd love to hear them.

Saturday, September 26, 2009

The things we say

The weird things I say on a regular basis
If you don’t wheel yourself over here right now im gonna….

Don’t you stomp your hands at me…..

You take those brakes off right now young man

Watch out for their feet

Don’t run over your sister

Watch where your legs are

Big pushes, not little pushes

Don't run over your friend


The incredible things I get to say on a regular basis
You can do it

You’re so strong

Just two more steps

Keep on going, almost there

I’m so proud of you

You did awesome

I know you’re tired, but you can do it

Mommy’s right here

I’ll help you if you need it, but you don’t need it

I promise to catch you

Look, I’m right behind you

Look how fast you’re going

You did it, baby!!

Friday, September 25, 2009

From a Friend

I have a child with special needs?

When my friend, Kari, asked me to write something for her blog, which was created to be a ministry for moms of children with special needs, I really had to pray about what to write because I do not really see my three year old Matthew as disabled.

Yes, he has been diagnosed with spastic diplegia cerebral palsy, wears braces all day, walks with a reverse Kaye walker, receives occupational, speech, and physical therapy twice a week, and gets botox injections every three months in his legs. He has seen more specialists than this article will allow space. He spent two months in the NICU before he could come home, and has had surgery (achilles tendon lengthening) on his legs. He still needs his wheelchair for any long distances like trips to the zoo and we have a handicap placard for the van. So, to the naked eye, at first glance, yes, we have a disabled son.

But look just a little longer, and you will see his smile. And then you will hear his laugh.

And that image of the disabled child melts away. At least it does for me, because when I hear him laughing five minutes after receiving painful botox injections, or playing tag with his six year old sister while in heavy casts after surgery, which he had to wear for a month, I am reminded that I am blessed to have a DAILY encounter with God's grace and love.

Matthew struggles with feeding himself with a spoon/fork. It is not easy for him to get into a chair by himself. By the time he sits down at the table with the other kids, they are ready to get up and move on to the next thing. When the kids are playing tag, Matthew can participate but may bump the other kids with his walker. Some kids understand, and others do not want to play anymore. Through all of these things, he has a remarkable spirit. When he prays at night, he thanks God for his walker and his wheelchair. He just keeps going....and so will I...

But Jesus beheld them, and said unto them, With men this is impossible; but with God all things are possible. Matthew 19:26

Faith is to believe what you do not yet see, the reward for this faith is to see what you believe. Saint Augustine


By: Monica

Thursday, September 24, 2009

Tuesday, September 22, 2009

Celebrity Status

When the world first hears of your child's special needs you reach a new status in today's society. I have found that especially in today's churches you reach what my husband and I like to refer to as celebrity status. Everyone wants to talk to you, hug you, pray with you and for you. Your fridge is bursting at the seams with meals and you cant walk two steps in the church sanctuary without getting at least a half dozen hugs. Now don't get me wrong. I believe strongly that God shows us immeasurable grace through those moments. He gives us strength by allowing there to be no doubt of His love and our church familiy's love surronding us. You can conquer anything in those moments, during those constant reminders of support, love and encouragement.

Then it happens. Your status changes. You are no longer the celebrity.

The dust settles and people move on with their lives.


However...
God is still good. God is still soverign. God's grace is still sufficeint.

The thing I have recently come to realize is that it is not because people do not care. Your status may change. There may be more pressing prayer requests on people's hearts, but I believe the responsiblity lies with the parent of the child with special needs. Assuming no one thought of my day to day struggles I stopped talking about them. Assuming that no one wanted to know about the last time I cried or wanted to give up I stopped sharing those moments. It wasnt until I finally had enough nerve to tell my best friend that I had felt forgotten that the light was shed on what had truly happened.

I had stopped talking. I had stopped sharing. I had closed the windows, drawn the shades and nailed the blinds down.

I was missing out on the hugs, on the prayers and on the gentle questions of how I was doing because I had stopped talking. I was missing out on the grace that God intended me to have THROUGH my life as I raise Toby. I assumed when Toby was a baby and we weere past the monthly ER visits and ICU stays that the hard part was over.I believed that now I was at the part that I was going to handle on my own.

Looking back I understand that the dramatic moments, such as rushing to the hospital, isnt the hardest part of a child with special needs. The hardest part is the day to day living. The moments you don't want to drag the wheelchair out of the car one more time or strap on a brace to a little boy asking you to stop. I also understand now that God did not intend to just a help me through the first few months of Toby's life He intended to see me through to the very end.

God is still good. God is still soverign. God's grace is still suffiecient.

Even in those daily moments, if not especially in those moments. God's grace does not leave us after the hospital stays and hard therapy sessions. God's grace might be more evident in those moments, but He doesn't change.

We might not be celebrities any more. We might assume that no one is asking because no one is caring. But maybe, just maybe we've stopped talking, stopped sharing and nailed those blinds shut. Let me challenge you with being willing to open yourself up and share those moments of heartache and trials. Give your family and friends a chance to hug you, pray with you and even fill your fridge if need be.

The Reason

We all have our stories. We all have our trials. This is not just about Toby. It's not about braces, wheelchairs, therapy and doctor's visits. This is about bringing God glory in our everyday life and in our children's lives. Yes, our lives can be filled with pain but also with a hope that other parents will never experience. Praise God for the hope in the midst of the pain. I started this blog after talking to a couple of friends about the honesty we need in our Christian lives, especially in regards to trials. We want our pain to be private. I especially would much rather "fake it" than to open the shades on the windows of my heart. Well, with this blog I hope to not only open the shades, but open the windows and the doors of my hear--all with the goal of sharing God's grace.

Psalm 73:26
My flesh and my heart faileth but God is the strength of my heart and my portion forever.