On security

You know those poor couples you see going through security at the airport? The ones who can't get it together? The ones who have more bags than people and further more they have weird, sticky things in their bags that do not belong in airports. The ones who look so mad at each other you are about to do them a favor and call in the divorce lawyers? You know - the ones with kids? We were that couple in the airport!

I was carrying Parker on my hip (who, by the way, was arching his back and wiggling to get out of my grip), a huge and heavy backpack with all of his "traveling necessities", our jackets and I am trying to take off my shoes and take out the DVD player in my backpack. The security lady, with no mercy, says "you need to take off the baby's shoes Miss". Right.

Jon and I are bumping into each other and I hear him sighing in frustration behind me. We are trying to stick together and we are both furious at the other person for not helping. I turn around and snap, "a little help?" but I realize he is carrying his own backpack, another backpack with the camera and video camera, our lap top bag and the freaking car seat! He shrugs his shoulders in a "what would you like for me to do about it?" way. I can feel our fellow airport security peers eyes burning into my back. If you look into their eyes you will see that it is a look of pure pitty. They are screaming in their minds "people like that should not be allowed to leave home". Oh I heard it.

I can't speak for Jon on how stressful this was to him, but he was literally sweating once we made it through. No lie, we were out of breath!

My reason for this post is to ask you this, please, be kind to these couples. You don't actually have to help if you don't want to - although how hard is it to push one of those bins down so a poor woman with her baby and 5 million things does not have to bend down to get it herself - but please, don't stare. Don't roll your eyes. Don't sigh loud enough for the whole airport to hear you. Seriously don't laugh. For one thing - it is not nice but for another - you might sitting in front of them on the plane and the mom has the ability to stop the child from kicking the back of your chair - or not.

The Great Sunday Change

Tomorrow is another church day...
This used to not be a stressful event for us - in fact - this used to be a time of reflection, rejuvination, and centering. Now that we have a 9 month old, church has become anything but! For the last few months Jon and I have split the duties. Jon held him in the beginning during the readings and homily so I could focus and then I would hold him during prepartions for and during communion so Jon can focus. Now it just doesn't matter anymore.
When we walk into church in the morning Parker always so looks so angelic. I carry him in proudly, bragging in my mind about how sweet he is and about how lucky I am to have such an adorable and well behaved baby. People wave at him and he smiles and laughs in return. Then something happens. We sit down, the organ starts, we sing happily, and then just as we all sit down and a prayerful quiet comes over the church - something happens to my son. I bow my head to pray and I hear the click click of his thrown pacifier hit the ground 3 pews in front of us. "BA BA MA MA DA DA DA DA!!" he screams ecstaticly with the freedom of not having anything in his mouth. "Get the other one out of the bag" Jon snaps out of desperation to get him quiet as the looks from our fellow worshipers fall on us. "I didn't put one in there, you said you were going to get it - it's in his crib" I whisper LOUDLY pulling everything out of the bag even though I know it's pointless. "LA LA LA LA LA LA LA BA BA BA BA" He continues - even the priest looks at us. "No you were going to-" "Does it matter?" I walk three pews up, get down on my knees to retrieve the missing pacifier. Hurrying back, I pop it back in his mouth to shut him up. Quiet. Sigh. "click click click". and its gone again. "BA BA BA BA BA BA BA BA LA LA LA LA LA LA".

Ok so we go to the nursery. No one is working but there is another mom in there with her son, Ethan, who is about Parker's age. They play quietly together and his mom and I isten to mass going on through the speakers. Then Matthew and his dad come. Matthew is a huge 1 year old and he is a bully. After 3 minutes of "Matthew stop hitting, Matthew don't take that. Matthew don't pull his hair. Matthew don't sit on him. Matthew Matthew Matthew...." it is time to leave.

Back in the pews it's time for communion. All is quiet, respectful, and reverent. Well excet for our pew. Parker is kicking the seat in front of us. This is new so Jon and I are looking around like everyone else trying to figure out what the thumping noise is before we realize it's OUR child. He is writhing in my arms trying to break free, kicking his feet violently as I walk up to take communion all the while singing along with our Holy Holy Holy "LA LA LA LA LA" louder than the organ is playing.

Jon takes him to the back of the church because clearly we are moving past being a distraction. I can hear him all the way from the back "MA MA MA MA MA MA MA MA MA" getting louder and louder. And it's time to go. i grab our stuff and hurry towards the back signaling Jon with my hands to get outside "go go go go go"!

And wouldn't you know he sleeps all the way home?

I don't know how it happens or why. I just know that the sweet and innocent looking angel we bring into church is not the same bewitched banshi we rush out with an hour later! And I also know we are doing it all over again tomorow.

Figuring it out

In my struggle to find peace with everything that is happening I started to read Romans. I remember in one of my religion classes called "Life and the Letters of Paul" that Romans was refered to as the "faith" book and I am finding that to be true. Here is the message I am getting from all directions: my readings in Romans, the homily/sermon this morning/my devotion book: Calm My Anxious Heart

Be content in every situation "I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want"

When I think of the word "content" I don't think of exubrant, jumping for joy, thrilled, ecstatic - I think of at a calm peace. A place of not challenging or fighting the situation, but accepting it.

I have been meditating on the imagine of Jesus in the garden the night he was arrested. He ASKED God to "take this cup from me". He was not eager to endure what God was asking of him. He told God that he did not want to do it - BUT (and this is what contement is) he said "but not my will but yours be done". And he accepted it. Jesus knew something I have just not been willing confront - not since one year ago when I found out about Parker's heart.

I read this little story tonight and wanted to share it here because it has changed the way I am thinking about God and my life as the mom of a baby with a heart defect. I needed this tonight.

"I need oil" said an ancient monk, so he planted an olive tree. "Lord, it needs rain that its tender roots may drink and swell. Send gentle showers" And the Lord sent gentle showers. "Lord," prayed the monk " my tree needs sun. Send sun, I pray Thee". And the sun shone through the dripping clouds. "Now frost, my Lod, to brace its tissues" cried the monk. And behold, the little tree stood sparkling with frostm but that evening, it died.
The monk sought the cell of a brother monk, and told his strange experience. "I, too, planted a little tree" the other monk said "and see! It thrives well. BECAUSE I ENTRUST MY TREE TO ITS GOD. HE WHO MADE IT KNOWS BETTER WHAT IT NEEDS THAN A MAN LIKE ME. I LAID NO CONDITION. I FIXED NOT WAYS OR MEANS. 'LORD SEND WHAT IT NEEDS' I PRAYED 'STORM OR SUNSHINE, WIND, RAIN OR FROST. THOU HAST MADE IT AND THOU DOST KNOW'

I don't know how to entrust Parker to God. I don't know how to give up control on this because I dont know what will happen. I don't know so many things but I do know this - if I am to find peace, contentment, acceptance - if I am to learn how to trust God in the bad times - then I have to trust that God will lead me to contentment. I know this is the right thing to do. I know it is time to stop being angry and start being thankful for the amazing gifts that I have and that Parker has - a strong body, a willful spirit, brilliant doctors with phenomenal technology, the list goes on and on. It is time to give up and let God run this show because He made Parker's body just the way it is and He knows what it needs. I like the greek translation of Philippians 4:13 " I am able to face anything by the one who makes me ABLE to do it"

If you are still reading this far into this, I realize this is a very personal part of my life to be making public. I learned when I was studying English that the only way we can immortalize something is to write it down. It's like the Pharoh said in that old 10 Commandments movie: So let it be written - so let it be done!

A big ole THANK YOU!

I have been really struggling with God about all of this for a long time. I was at a great place with it before this new news. Anyway - to make this a short entry - THANK YOU to everyone who has posted, or called, or emailed me any Bible verses that help you out in hard times. I really appreciate them and am reading them.
If you are looking for Parker updates, go to our carepage.

Go to carepages.com
sign up
and visit our page - the name is ParkerJay

Let me know if you have problems getting there.

Speaking of Holland...

Well for those who do not have our carepage information or do not have the details about Parker's heart - here is the quick catch up:

Parker was born with Transposition of the Great Arteries (his pulmonary artery and aorta were switched leaving him with two separate circuits - one side of his heart was receiving blood from the lungs and sending it back to the lungs and the other side was receving blood from the body and seding it back to the body - so he was sending unoxygenated blood to his body)
He had the Arterial Switch Operation when he was 3 days old to switch the arteries. He was home 15 days later.
Here is the new stuff:

At his last echo (in Feb) they found mild pulmonary stenosis (that is, narrowing in his pulmonary artery). At todays echo, they found that it is now severe. A normal gradient for that artery is 40 and his is 70. What that means for his heart is that the right side of his heart is working very hard to squeeze blood through that narrowing to get blood to the lungs. The pressure in the right side of the heart should be around 20. His is 80. That means the left side of his heart is working to push blood to his lungs as hard as the right side is working to push blood to the whole body.
In the echo, it looked like the stenosis was at the valve. If that is the case, he can have a catheter procedure where they would go through the leg into the artery and inflate a balloon to widen the artery.
If the stenosis is higher up, they may have to put in a stent (which would have to replace throughout his life as they do not grow)which will hold the artery open. They can also do this in the lab, but it is riskier and is not fixing the problem.
Worst case, and I'm not sure what would require this, is another open heart surgery.

Needless to say - I am pretty shaken up. I'm frustrated all over the place because I'm not sure how his heart could be functioning like this and I not know it. I feel like I have the responsibility to know that stuff. He's not tired, he's not sweaty, he's not blue or swollen. He's crawling all over the place, taking toys, giving kisses, demanding food, he's a big nutty nut. I always knew this was a possibility so I can't say that I'm shocked like I was the last time - but, as a friend of mine who has gone through this same thing put it, I feel derailed. I felt like we were on the "healthy" tracks because he was doing so well and actually we are not. We are on the "out of my control again" tracks and I hate that place.

I have spoken with a good friend who went through this same thing wtih her son when he was Parker's age and received some wonderful advice about things that I can be in control of: what information I let into my head, what doctor I am working with, and how I view the problem. I am trying VERY hard to have faith that this is ok and to come to terms with the fact that this is our life.
I was starting to get the feeling that when they said Parker's heart was "fixed" they meant that it was perfect. And that's not what they said. Parker's TGA is fixed, compeltely, and that is amazing - but in doing that, little problems will inevitably come up for him. It is not perfect. And that's ok. This is not the end of the world. This is not the worst thing we have been through.
I think the problem is not that I am worried, although I am, but it is the knowledge that there will always be something to worry about. All I have to do is get on board with that, and try to worry peacefully and not let it get in the way of the days that ARE perfect. I can worry when I need to and praise God when I don't.

On Holland

A good friend of mine, Melissa, is heading to Michigan tomorrow for her daughter's 3rd and hopefully final open heart surgery. Melissa emailed me shortly after I found out about Parker's diagnosis. We are members of an online support group for mothers with heart babies. Anyway, Melissa told me a lot about what to expect and she even sent pictures of her daughter after surgery so I wouldn't be so upset when I saw Parker. Today as she gets ready for this next surgery she posted this article, Welcome to Holland, and said that she felt that it really expressed what life is like having a child with a disability.
While I do not consider Parker to have a disability, because he was fixed, we are less than a week away from our next cardiologist appointment. All of those familiar fears come back again and I have to come face to face one more time the knowledge that our lives could change next week and if it doesn't then I can rejoice again because God heals and Dr. Mavroudis is a genius. Anyway, I wanted to share this article because I do understand what it is like to land in Holland:

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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.

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.