Attitude of Gratitude

Since it has been three days, I have to blog tonight. If I don't, I'll have to change from the "Almost" Daily Blog to the "Occasional"Blog. I'm just not ready to do that.

I know most of my blogs are a comic relief for me; a way of letting go of the frustration in life. Adding humor always does that for me.

Today, I am somber. Today, I am grateful. Today, I have been reflecting. This is typical for me on this day. Tomorrow we go in for my son's annual tests and check up on his heart.

I won't sleep much tonight. This is the day I beg and plead with God. I pray that tomorrow when I go to bed, I will get some sleep and my heart can rest...at least until next year.

He is in his room right now just next to mine. I can hear him humming a happy little tune as he is getting ready for bed. I am grateful he is oblivious to all of this. I am grateful this is my burden right now and not his.

Eight years ago, I had just given birth to my first child.

I wasn't ready to be a mom yet. This decision to start a family was pretty much made for us. I admit, I could have pushed a lot harder in that delivery room but I needed the time. And, I guess so did Tye. His shoulders got stuck, the doctor panicked and it took about six people all pulling together and an act of God to get him out without having to break his collar bones.

He was precious but I have never been able to call him my "little boy" weighing in at 10 pounds. My husband reveled in his giant football-playing son. Almost big enough already to play pee wee league.

Shortly after his birth, a physician came into the room to talk to me. He explained that there was something wrong with my baby's heart. When they released us from the hospital we could go home for one night but we needed to go to the Children's Hospital for tests that next morning.

This was something I was not prepared to hear. I spent the day to myself. Everything around me seemed a blur. I didn't want this for my son. I was scared of what it might bring.

I decided to go down to the nursery. I saw my husband and a nurse in the back of the room dressing my baby. As I approached, another nurse came from behind me to talk to my baby's nurse.

"Janet, what do I need to do with these stillborn pictures?" she asked.

My steps froze and my heart with it. As sad as I felt right now, it was nowhere near that poor mother in the room next to mine. I got to take my baby home and hold him. He was still breathing and living. My outlook changed, I instantly felt gratitude for what I had and learned to accept it no matter what.

When we arrived at the Children's hospital, we were treated so well. I was told that I could not feed him in case he needed to be sedated for any of his tests.
After a few hours, they changed their mind when my milk came in and I was about to pop and I looked like a leaky fire hydrant.

It was a long, long day. Finally we got to meet with the man that would tell me what was wrong.

He explained that his valve didn't work right, and nicely drew some pictures. Then he asked if we had any questions.

"Is he going to be able to play football?" my husband asked.

"Oh my gosh! Is he going to live?" I interjected.

I was assured that he would live and that his condition was at worst moderate. We would eventually have to do surgery but we would not know when that would be.

Yet somehow it was always lingering in the back of my mind, there was always a weight on my shoulders; this fear that I could not shake.

I couldn't imagine them taking a saw to his perfect little chest and cutting him open but my mind imagined it for me.

Each time I bathed him and washed him, I washed over the invisible scars that were already there in my mind. I tried to toughen up and prepare myself for this.

All they knew was it was not going to be right now. Each time we come in, we will evaluate and see if it is time for surgery. This would require a valve replacement. And depending on how well the outcome, would decide how long he would get to live. Yet nobody could give me any kind of guess to what that might be and we would pray that technology advances faster than his deteriorating valve.

We learned when he was three that he got his heart from his grandpa who was diagnosed with the same thing that year and died in surgery.

And each time, we found no news was very good news. Until two years ago.

He had for some reason had a larger than normal increase in deterioration and the valve was leaking more than before.

They suspected if it kept up at the same rate, that at the next years' check, we should prepare for surgery.

And faster than I wanted, that check up came. So we faced it head on with our faith in God and many prayers as our only guiding hope.

During his last test, the technician did something unusual. He left the test and returned with the physician. The physician reviewed what was happening on the Doppler and on the screen. He seemed anxious, intent. He lifted Tye from the exam table and sat him upright. He took his stethoscope and listened. He quickly asked the technician to turn off the machine so could hear better.

He listed intently again. He then opened the curtain and asked the nurses in the other room to not talk. He listened again. Then he left.

I was beginning to get nervous. He returned a minute later with a chart and read through quickly and set it down.

Then, he listened again.

Finally, he sat down in the chair next to the table and set down the chart. And then he just stared at us for a second before he spoke.

"I don't know what to tell you. Looking at his history, each time he comes in he deteriorates a certain percent each year. Since looking at the increase from last year, I anticipated another significant increase. However, it has somehow stabilized for now and barely progressed at all. But what I find more interesting, is the fact that every time he comes in, we can literally hear the leaking in his valve through the stethoscope. And...I can't hear anything. In fact, I can't give you a scientific reason why that has happened. I will be changing his condition from moderate to mild and.....I am going to let him play baseball. But that's it, nothing else, only baseball."

This was amazing to me. We picked up our things and left. Tye held my hand as we walked to our car. And he skipped through the parking lot.

When he looked up at me he noticed that I was crying. I couldn't hide it any longer. He stopped.

"Mom, why are you crying? Cause I got a bad heart like Grandpa? he asked me.

"No honey. I'm crying because I am so happy!" I said.

"You are? You're happy cause the doctor told me I get to play baseball and maybe even do karate one day?"

I just nodded my head.

"Me too." he said and he continued to skip to the car.

I can't always expect a miracle. I would think that one per lifetime is enough. And though it still progresses toward the inevitable, knowing that we bought a little time, made me feel better.

Most of the time I am complaining about my kids being naughty or ratting them out for something they do. But the counter to that, is that without comparison, they bring me far more joy and happiness than I ever thought possible! And thinking about even one day without them, brings a downpour of rain.

I'm still not ready for motherhood. That's obvious by my terrible parenting methods and oversights. But, I am working on it. And to those of you not ready for motherhood either, guess what? You never will be! It's a hands-on training. Baptism by fire. The hardest and by far most rewarding and wonderful thing you will ever do.

So once again, we face tomorrow. I can only hope that we will be skipping to the car again when we leave.

I can hope.

Update on February 6th:
First of all, I am overwhelmed by my good friends and family. I have had lots of emails asking for an update. I would like to be able to say that we received good news today but that was not the case. Although, things could always be worse, so I still count my blessings.

He has been moved back to moderate status, his valve is leaking more and his aorta is weakening. So we are moving more rapidly towards surgery but still not sure when. We are just trying to get the most mileage we can from it first.

I was surprised when the doctor said he wanted to monitor him a little more closely and he was concerned for the significant increase in deterioration.

We knew it was inevitable. I am hoping to continue to prolong repair as long as necessary.

Once they put a valve in, it usually lasts a max of 20 years before it needs to be replaced. But subsequent valves replacements never take as well as the first and most doctors will only allow two.

Thank you for all of your love and support.


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