More pictures

Here's his Godfather imitation

Here he is

taxes

Two of my siblings have recently commented on politics on their blogs so I guess I can too.

I think it is hilarious that the Chairman of the House Ways and Means committee (yeah the one in charge of writing the tax code) was cheating on his taxes. I think it's even more funny that despite the fact that he has been on the committee since 1975, his excuse was "I didn't know I was supposed to report that..."

If a man who has spent the last 33 years writing the tax code can't figure it out...

mother and child

another picture

I recognize that I haven't been posting all that much...tough. I have school and a baby to attend to.

So small

Home

Finally

I know it was only four days...it seemed an eternity.

Happiness

Sunlight in his eyes. Fitting him in the carseat. Crossing the threshold with my son.

Here we are.

Mom's sleeping. Ben's on my lap. One hand typing.

Nothing has changed.

They redid the echo...wait and see again, trips to the cardiologist in my future. Nobody really knows what's going to happen with his heart. It could heal itself and only need occasional monitering. It could lnd him back in the hospital. We continue to trust God to do his will.

Everthing has changed.

Life will never be the same...home from the hospital. The place we have prepared for him is finally in use. I put him in the crib I made. He's so small. An actual living thing sleeping in my arms...right now. We continue to thank God for the wonderful gifts he has given, the provision he has made for us.

On hospitals and discontent

We're still at the hospital...day four. Tomorrow Ben will have an echocardiogram to look again at the abnormalities they saw on Friday. I'm not sure what to expect. He seems to be healthy, progressing normally. But I can't see his heart. It is trying to have to wait and see...to not know...to not have any power...to not be able to fix him...to not even know if he still has a problem.

It's a little draining being at the hospital. It is grating to see Bentley constantly attatched to the machines...heart rate...respiratory rate...O2 Sat...Blood Pressure...Temperature. Nurses looking over my shoulder...How much has he eaten...has he pooped yet...was his diaper wet...feeling inadequate. If he doesn't poop, what can I do...how many excuses can I make...

It's also hard to face so much uncertainty. I don't know what is going to happen tomorrow. I hope and pray that we will be able to take him home tomorrow. Maybe we'll stay...maybe we'll go...maybe he'll have to go to the ICU. And I can't do anything about it.

And so we trust God...to keep our son safe...to give us peace...to guide us into his will...to take us away from this place when the time is right.

gotta represent

Little Ben will be cheering for me tomorrow as I take my test

The Elephant in the Room

I feel, perhaps, that I should communicate my feelings over the last forty-eight hours with the community of people that surround and love us. Because, after all, life is not what we plan, and sometimes God prepares a way for us, that we cannot predict.

My son (I know I'm still getting used to the idea too...it's kind of scary), has Down Syndrome. At least I believe he does. The blood test won't be back until early next week. But the doctors are fairly confident, and so, for that matter, am I (though admittedly my experience is limited.

It has been an interesting experience, communicating this fact to the people I love. Because no one knows how to react. A few people say, "I'm so sorry..." To which I respond "I'm not." Some just say "ok", some "that must be a shock," but the most common reaction is simply silence....or "really???" One friend couldn't figure out if I was joking or not. (I wasn't). Really, I don't know what reaction I expect...I wouldn't know which one to give.

So let me tell our story. Adrienne got pregnant 9 months ago (a predictable number I know). About six months ago she had an ultra sound...everything was normal, then two days later her doctor called. There was a barely perceptible fuzzy spot on the tape. Something that probably was nothing, and something that if it was something, still probably meant nothing. But, if it was there, and it meant something, then in less than two percent of cases it could indicate Down Syndrome. She offered furthur testing, but we really didn't care...it wouldn't have changed how we proceeded. Adrienne and I talked at length about it. Down Syndrome was something we had never imagined for our children. We feel called to reach out together to at risk, and special needs children...but our own offspring. It hadn't occured to us. But we prayed about it together.

Two days later, at school we had a panel of families with children with Down Syndrome. And it was incredible. The kids that came were some of the cutest, friendliest, happiest kids I had ever encountered. And I learned there to see children with Down Syndrome as children...who just needed a little extra care. On my way home that day, I prayed for our child (I didn't know it was a he yet) and I prayed that God would open my heart to whatever he had in store for us. And I prayed that if our child did have Down Syndrome, that I would rejoice in thanksgiving. That evening, Adrienne and I prayed together again, that we would accept whatever he had in store for us with joy.

I continued, throughout Adrienne's pregnancy, to experience God's work preparing my heart to accept his will. As I prayed for our child I knew the bond was forming between us, despite our physical separation.

So, when he was taken to the NICU, I went with him, to watch him begin to breath. When the pediatrician called in the neonatologist, I knew. When she said the words, my heart leapt for joy. God has blessed us with a child who will bring light and joy into our house. It is right, It is good. It is not a difficult thing to accept, or something to get used to. God has already done that work in our hearts. My son has Down Syndrome, and I am glad.

I know it will be difficult. I know that there will be trouble. I know that my life will never be the same. I also know that all of those things would be true if he didn't have Down Syndrome.

here they are

For those of you not here

here are a few pictures, more to follow

fun and games

med school friends came to visit the first night

mother and child

look at him

welcome

On Disparities and Health

We had a lecture today from one Dr. Flack, a very interesting man whose lectures I always enjoy. The topic was health disparities, specifically disputing a number of common assumptions.
1. For example "There are health disparities between races." In reality the genetic differences between races are minor. The reason African Americans and Hispanics appear to be disadvantaged is that they are disproportionately poor. Now that in and of itself is a result of disparities in economic opportunity...but African Americans are not inherently unhealthier than other groups.

2. "The United States spends the most on Health Care but still lags most other developed countries in Health Status." There is a false assumption here: the medical establishment can create good health in a population. The truth is, most diseases of high prevalence in the developed world are dependent on choices made by individuals years before the disease presents itself. The fact that Americans choose to live unhealthy lifestyles leads to the poor results on international surveys. Spending more money won't fix that.

As Americans we have gotten used to the idea that you can buy your way into anything. But in medicine there is a limit. The only way to improve health generally is to convince people to live healthier lifestyles.

There is one group of people, however who are consistently disadvantaged when it comes to medical care...the poor. They live disproportionately in cites, where access to fresh fruits and vegetables is limited, and fast food abounds. Where it isn't safe to be outside at night, the only time many people could exercise. They have less access to education, they drop out more (educational attainment is the single biggest determinant of health status) And there are fewer medical clinics and hospitals to serve the populations of urban poor. Consistently underserved.

back in the game

As anyone who has checked this blog in the last month will recognize, there is a post dated July fourth that was never there. This is one big reason I haven't posted in so long. I wasn't sure if I should post this and it kind of got stuck in the pipeline blocking up my flow of ideas. But I guess I should put it out there. At first I thought it might offend people. And it might. Then I thought, well it's been a while...and so it has. Then I thought, I'll think of something else, but nothing came. So today I edited it for readability...which doesn't mean it's readable. but there you have it.

I've also added a small post to go along with the other

On nationality

So Steven wrote some time ago about the experience of being an American in Russia (which would probably be a bit more tense now than it was just a few months ago).

He wrote "So then, I told her, what separates us? Legal fictions, Bokononian categories that hinder intimacy. We have said, and shall always say, that we who know Jesus have more in common with an Iraqi Christian than with an American non-Christian. We must come at others with these two categories in mind only, no supremacy, no victory. Just those IN CHRIST who will fellowship on that level."


I think Steven, that you are correct. When I first began to travel, I found myself often trying to defend the actions of the United States. Now that I understand that I have more incommon with a Christian from any country than an American who isn't a Christian, I can say..."I don't agree with that." And I can claim my citizenship in the kingdom of heaven to say, "the false reality you call 'the United States' does not define what I think or do and is not a real pert of my identity in Christ."


Anyway...I've said enough