Suzie is a star…

Lwci_lpg_cov_special_education_toda Suzie is a cover girl this month. Never thought I would be proud to say that…But I am. She is on the cover of Special Education Today. Lots of cool pictures and a story about her "story." The magazine does not have a website…so the story is below…

“We need to do a spinal tap, to check on her spinal fluid,” said the very young doctor.

“Why?” I asked. “Why do we need to do that? She just has an ear infection.” “We need to consider the possibility that she might have bacterial meningitis.” It was in that moment that life changed.

For just after we heard that shocking bit of information and nervously signed the consent form, the doctor prepared to take what looked like the biggest needle in the hospital and jab it into the spinal column of our five-month and twenty-two day old daughter Madison.

“How often does this happen?” I asked. “I mean that an ear infection would turn into bacterial meningitis?”

“Not often,” said the doctor.

“Like maybe one-in-a million?” I said.

“Yeah…maybe.”

We were quickly ushered out of the room by someone (it all became a blur) because “this procedure may be a bit uncomfortable for your daughter.” And standing in the hallway, bracing myself against the flat white wall of the Vanderbilt University Medical Center Children’s ER, I heard the doctor count “1,2,3…” and then I heard my sweet little Madison make the most horrible sound I have ever in the whole world. Moments later, the doctor called us in and held up the syringe. “See how milky that spinal fluid is. It should be crystal clear. I am afraid she does have bacterial meningitis. We’ll need to get her upstairs right away.”

So they put tiny little

Madison

in a cold plastic bassinet and we all headed to the elevator. I was holding the plastic bag that had her clothes with one hand and clutching the hand of my pregnant wife with the other. A quiet moment later, we were in the pediatric intensive care unit. Little did we know what the next eleven days would hold, and how they would shape every minute of the rest of

Madison

’s (and our) lives.

For eleven days, we rode the wave of good news and bad news. Our hope would rise with a positive report from the doctor, and would fall with disappointing results from a test. We learned scary things about biology and chemistry and “Do Not Recusitate” orders. We made decisions we had never anticipated making. Things like when about three days into our journey the attending physician came to us and said “I need to talk with you.” Anytime the doctor said something like that, it was never good news.

“We are concerned that, because of all the medicine

Madison

is on for the seizures and the infection and other things, she may stop breathing at some point. And so we would like to put her on life support now, when we are able to do it when it is not an emergency. I’ll give you a few minutes to talk about it.”  Of course, there was nothing to really discuss, so we gave the consent. And they snaked a long plastic tube down her throat and flipped on a machine which would do her breathing for the next few days.

And for eleven days, four of which she was on the life support, we prayed and cried. Our  confident exclamation “This is our amazing child, given to us by God” feeling at her birth less than six months before became the very nervous question “But is He planning on taking her back?” But even in the midst of all the uncertainty, all the confusion, all the unknown, there was never a point where we felt alone. We never felt that God had left us, or had forgotten our daughter. There was a peace that was larger than any fear we had.

For the better part of our eleven days in the PICU, we were allowed to be with her for a few minutes every two hours. At the appointed visting time, we would push the intercom button and ask them to unlock the door to the PICU so we could come in and sit by her bedside. And mostly during our time with her we would just rub the soft skin on her face or talk quietly to her (“

Madison

…we love you very much…”)

I remember praying by her bedside during one of those brief visits. At this point a life support machine was breathing for her; a feeding tube was keeping her nourished; her little tiny arms and legs were surrounded by the tubes and IV’s; and a raft of different monitors were playing sentinel to everything going on in her body and brain.

And at this point I was not able to pray for much. I was not strong enough or confident enough to pray for healing or wholeness. I could not pray that she be restored or renewed. All I could utter was a very feeble “God, give her joy in her life.”

And that was the prayer that has been answered every day of her whole life, starting there in the hospital.

On day nine or so of our hospital stay, as things began to settle down a bit,

Madison

was scheduled for an MRI . In order to get the best results from the test, the doctor wanted her to sleep through that exam. And since her little body had already been through so much over the past several days, that they didn’t want to give her any more medicine, it fell to me to keep her up all night.

So throughout the course of that very long evening and night, I spent hours singing her songs as we made our way around the hospital floor. It was about 3:00 am and I had completely run out of any songs that made any sense and I was singing to her about our little brown dog. “Bongo loves you…loves you baby. Bongo loves you…Bongo loves you.”

And in the midst of those silly verses about Bongo,

Madison

smiled. For the first time in nearly two weeks, our daughter Madison smiled.

I think she may have been just humoring me. “Daddy, if I give you a quick smile…will you please stop with this song? Seriously, you’ve done like ten thousand verses already. You’re down to the dog, for crying out loud…have a little dignity man….”

Or maybe it wasn’t that at all. It could have been gas, for all I know. But it was a seet smile from

Madison

nonetheless. And it was my version of the rainbow after the flood, the sign that she would have “joy” in her life, the sign that everyone could move on with their lives. And two days later we went home.

As we begin to fully understand over the next few weeks, months, and years,

Madison

has a significant number of challenges resulting from her bacterial meningitis. She has lost the function of about a third of her brain due to the swelling and loss of blood flow during the fever. She has a significant seizure disorder which we have under varying degrees of control. The level of control seems to change for no apparent reason and so it is a constant battle. She has a mild form of hemiplegic cerebral palsy. She also has all the expected cognitive and developmental challenges seen in people with similar brain injury.

Madison

is active in school, but continues to slide a bit further behind her peer group every year.

And while frankly there is much more unknown than known about

Madison

and her future, there is one thing that is crystal clear. It is this.

Madison Suzanne Atwood has taught me, and countless others, a thousand things more than we will ever teach her. She has helped us all see that simplicity, honesty, and sincerity are keys to life. Her friendships are not clouded by expectations or concerns of reciprocity. There is no hidden agenda, or motive or intent in her approach to others. It is simply, “come with me and let’s enjoy life.” She is not seen as “typical” by the public school system and nor by society as whole. She does not (and most likely never will) read like her peers, or talk like her peers, or have the same kind of job or family or “opportunities” as her peers.

I may never know why she got sick, why God made her to be who she is, why he picked me to her dad. But I do know that every day, people are changed because they know her and love her.

At our church, a whole ministry to kids and families with special needs grew out of a loving children’s pastor desire to help

Madison

enjoy church. And now, every week, a whole group of kids with a range of different special needs get to participate, at a level appropriate for them, in children’s worship and in an adapted Sunday school class.

One of my favorite things in the whole world is to see

Madison

, standing alongside her Mom and other friends, helping to lead the singing at children’s worship. It is when I see her sing, or hear her laugh, or see her smile, that I know that God has honored my prayer, my prayer of desperation, that Madison have a life of “joy.”

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Posted on September 9, 2007, in Dad stuff. Bookmark the permalink. 1 Comment.

  1. Thanks for sharing the article. I really enjoy reading about Suzie’s successes and the positive effect she has on everybody around her.

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