Wednesday, October 15, 2008

Luke 18:1-8

This seems to be such a memorable time of year...One year ago today Mikah was in surgery having his G-tube placed. He was a very scrawny, bones showing 11 pounds. Over the past year he has come a long way from that skinny little man. He now weighs over 20 pounds. He has a Mic-Key Button instead of a standard G-tube. He also has developed a personality complete with many opinions :) The little things you take for granted. We didn't actually realize that he didn't have opinions until he started showing us his opinions. He has started, as of two weeks ago lifting his head up while on his belly. He can sit. He can jump in the Jumperoo. He can propel himself forward on his inclined floor. He will get himself from one end of the room to the other in order to see what his big sister is so excited about. He grabs and picks up toys. He loves to pound on things, drums anyone?? He loves to watch Lawerence Welk on Saturday night with the rest of the family and he loves to read books. He pets the dogs and has a growing vocabulary consisting of Mama, Dada, Up and More. He is trying very hard to say Ellie and he will sign "eat" and "all done". He loves sweet potatoes and popsicles and hates plums. He has a great laugh and beautiful smile and loves to be tickled!
The nights are the hardest right now. For a while he was sleeping perfectly. And then a couple weeks ago he caught another cold. A simple common cold. But in Mikah it becomes a nasty thing and so now we are not sleeping. Another thing you take for granted...sleep. I can't remember when we stopped sleeping, it was a long time ago. And thank you to everyone who has taken the time to offer advice...It is hard to not sleep. It makes it hard to function during the day and it makes it hard to continue having a positive attitude admist all the other things going on. The other day, after not sleeping, I became very frustrated. I have always been fairly strong in my faith that God will always see me through. But at 2 o'clock in the morning when no one is sleeping and no one has slept for 2 weeks straight I found myself becoming quite angry at God. Wouldn't it be so easy for him to just make Mikah sleep? To touch him and heal him and at least let us sleep? We could still deal with the other stuff in our lives but at least we would not be doing it through the fog of insomnia.
After mulling these thought over in my mind I was given these verses from Luke 18:1-8.
Then Jesus told his disciples a parable to show them that they should always pray and not give up. He said: "In a certain town there was a judge who neither feared God nor cared about men. And there was a widow in that town who kept coming to him with the plea, 'Grant me justice against my adversary.'
For some time he refused. But finally he said to himself, 'Even though I don't fear God or care about men, yet because this widow keeps bothering me, I will see that she gets justice, so that she won't eventually wear me out with her coming!' "
And the Lord said, "Listen to what the unjust judge says. And will not God bring about justice for his chosen ones, who cry out to him day and night? Will he keep putting them off? I tell you, he will see that they get justice and quickly. However, when the Son of Man comes, will he find faith on the earth?"
Do I cry out to Him day and night? And what of my faith?
Perhaps the problem is not God's but mine. At some point in the past year I have let go of my unwavering faith and my crying out to God has grown faint. You could hear the drop of a pin above my whispers. Pray for me that at night when sleep eludes us I will be crying out to God for His mercy and grace.

Wednesday, October 8, 2008

Welcome To Holland

I have come across this many times. Just thought I would share it with all of you.

Welcome To Holland 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 you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager 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! I'm supposed to be in 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 guide books. And you must learn a whole new language. And you will meet 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 for a while and you catch your breath, you look around.... and 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 get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Friday, October 3, 2008

Are you overwhelmed and is it worth it?

"Well, I just don't want you to overwhelm yourself." This is my most frequently heard statement from the medical/therapy workers when they hear of the program we are embarking upon for Mikah. Overwhelmed?! I have been overwhelmed since he was 2 weeks old and "popped" his hernia on Valentine's Day! That was about 20 months ago.
I found it extremely overwhelming to take him to therapy outside of our home 4 days a week at a different time each day thus defeating the thought of even trying to have naps or a schedule. And then to sit and watch for 45 minutes while they made him scream and cry most of the time to the point of vomiting on himself in his car seat on the way and then trying to stop on Broad St. to make sure he was okay. Not to mention that his tube feedings had to be at a different time each day and there was no hope for really working on his oral eating skills...Yes, I am overwhelmed.
We haven't even started to discuss the emotional and spiritual battles that go on in my mind and heart on a daily basis.
But then isn't every mother overwhelmed? The grass is never greener on the side and I would never want to trade "her" problems for my own. No one else's problems are better to have than your own. God picked me to have these problems. He knew that eventually I would get over myself and stand up under them and that some day I will look down on them and smile. With his help. The verses in Psalm 40:1-2 have been especially important to me since I have found myself is this pit and yes it has been a pit but every day it is looking more and more like a beautiful green valley and some day I am sure it will be a mountain, tall and strong and firm that I shout my praises from.

Psalm 40:1-2
I waited patiently for the Lord;
He turned to me and heard my cry.
He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.

Back to the question of am I overwhelmed? Yes. Now the question, that some how seems more important, "Is it worth it?" If I was one that used profanity, I might have been prone to use some very explicit words and attacked the persons that have asked me that. This is MY SON that we are talking about! This precious, beautiful gift entrusted to me from God! He is most definitely WORTH IT! He was born into this family on purpose, not by accident and he is my charge for as long as God sees fit to loan him to me. He will always be worth it. Even on the days when we are both frustrated or on the days when he hasn't slept and so neither has anyone in the house, the days when we are at loss to know what to do for him, he will always be worth it. He is one of the wounded ones and, as Glenn Doman put it so eloquently in our class, in our family we DON'T leave the wounded behind. He may not have been wounded from a gunshot or a fall or from neglect or drugs or any number of other things and we may not know why he was wounded but wounded he is and we will not leave him behind. We will dedicate ourselves to helping him heal as much as God sees fit and we will pray that God receives all the glory for his recovery and the energy we had to expend to help him recover.
Some people may keep on wondering and asking, "Is it worth it?" to those people I will still say yes it is worth it. Do you know why? Because last night while I was out attending an amazing Mom to Mom Round Table Discussion at New Life Gahanna my husband called and left a message on our cell phone, Mikah got up on all fours and LIFTED HIS HEAD UP!! That is worth it! For my little boy to have learned in less than one week of not ideal, sporadic patterning to lift his head up when on his belly, that is most definitely worth it. And that is just the beginning.

Thursday, October 2, 2008

One Year Ago...

Yesterday marked the one year anniversary of the day that totally changed our lives...One year ago yesterday a very friendly and overly smilie home health nurse from Children's Hospital came into our home and "shoved" (sorry all you nurses but that is really how it looked and felt) a feeding tube up our son's nose and down into his stomach. At that time we didn't know why. Well, besides the obvious fact that he was dramatically losing weight no matter what we tried.
We didn't know why in terms of "Why wasn't he just as healthy as his sister or the kid next door?"
Today we do know why. Kind of. We found out later, after he had a more permanent G-tube placed that he is missing a tiny piece of his 14th chromosome. More specifically, 14q32.31. Who would have thought such a tiny little thing could make such a difference?
I thought it appropriate that on this anniversary I would create a more permanent blog for our family. SO here we are :) Enjoy!