William, with his brothers and sisters at Thanksgiving 2004

William at one year

William at Easter 2004

Our pregnancy with William was unusual, especially considering we had already had five children. We thought we knew what to expect, as we had "been there, done that". At 32 weeks pregnancy, I had my appendix out, which put me on bed rest for the last 7 weeks of the pregnancy. William was born at 39 weeks, at 9 pounds even.

In our first discussion with our pediatrician, I mentioned a brother I had who died at age 15 of a heart defect. It was over 40 years ago, and I had no information to tell the doctor what type of defect it was-our best guess was Idiopathic Hypertrophic Sub-aortic Stenosis (IHSS). Our pediatrician said all six of our children should be checked out for any defects- just in case. Why not check the baby first?

On December 31, 2002, I took William in for his first echocardiogram. The cardiologist said there was no evidence for IHSS, but there was a hole in the heart—a sinus venosus ASD. To say we were stunned would be an understatement. William looked normal, and we were told that there was really little or no murmur-now we are talking about open heart surgery on my baby? I had gone to the appointment alone, and had no idea how I would even walk to the car. I wondered if my face even looked normal-did I look like I hadn't really heard one word the doctor said after he said "surgery"? I was praying furiously inside, and went out of the office, walking to the car. As I entered the lobby, there was one of my closest friends, waiting for an appointment at another doctor in the building. The meeting was so unexpected, and I was so thankful to be able to cry all over her before I had to come home to tell my husband the news.

When I came home and told Jode, we just cried. I had gone for a simple appointment, expecting nothing, coming home with our world changed for our son. We have been through alternating times of gratitude for William, to sorrow for the ordeal he faces, to just weeping while watching him sleep.

We know that William was given to us as a blessing, and that each moment we have with him is precious. We have found that we appreciate the others more also. The cardiologists have told us that we need to have all of the children still monitored for IHSS, until they are in their early 20's. If they do not develop it by then, they will be fine. It is hard to live with that, for me, but it is strengthening my faith in the Lord. I know He knows, and that He knit William's heart to reveal His glory. Our life in the meantime is to walk, loving our children, and seeking His comfort.

May, 2004 Update

William is nearly two years old now, and our cardiologists have agreed it is time for him to have his surgery. We have set a date for his surgery for September of 2004, and are looking forward to having his repair done. We appreciate all your prayers and kind wishes.

April 2005 Update

We did go ahead with the plan to have William’s heart repair done in September of 2004, at Children’s Hospital of Philadelphia. We visited both Columbia Presbyterian in NYC and CHOP, in the process of choosing a hospital. We preferred CHOP, and went there to interview the surgeon and tour the facility. We had a list of questions to ask the staff, and they were fantastic in being upfront about all the events and needs that would surround William’s surgery.

We set the date, and prepared to go to Philadelphia. We arrived on Monday for the pre-surgery check up. William’s surgery went perfectly on Tuesday morning. We had a nurse who had been assigned to us to keep us up to date every thirty minutes during his surgery, which was a great comfort. The time still seemed to pass slowly, but it was wonderful to have someone telling us how it was going. Finally, we heard the surgeon was on his way down to talk to us. Dr. Spray told us it went perfectly, and that we would see William soon. William was so pale when he came to us, but he pinked up very shortly, and we actually went home on Thursday morning. We could not believe it was so short a stay, but we were very happy to go home.

On that Saturday afternoon, we had a difficult time waking William up from his nap. We called down to CHOP and were told to take him to the local hospital. They did a CAT scan, and then put William and me onto a helicopter to return to CHOP. I was numb, not knowing what was going on. I thought he was suffering from pleural effusion, and that a simple procedure would resolve his issues. However, when we got to CHOP we entered our longest journey with William, as we learned he had had a major stroke on the left side of his brain. This was a huge shock. The doctors said it should not have happened with this type of repair, and they did not have an explanation for it.

Jode and I truly walked a difficult path during this time; we have a deep faith in God, and knew from His Word and our relationships with Him that this was somehow in His plan. It was a hard process, but those first 36 hours waiting to hear the full diagnosis were especially so. On Monday we heard that his stroke had affected his speech areas in his brain, the Wernicke’s and the Broca areas specifically. His right arm was also not moving, and we didn’t know if he would use it again or how much speech ability or comprehension he would recover. While we were getting this hard news on Monday, we were deeply thankful for our pastor Jeff who sat with us during this whole time. God used him as a great comfort, and it was reassuring to know God was still with William and with us in that CICU room.

We began the process of helping William recover these areas to the best of his physical ability. This meant another twelve days at CHOP, in physical, speech, and occupational therapists visiting twice a day. We could not get into the rehabilitation facility at CHOP (it was too full), so we went to Children’s Specialized Hospital in Mountainside, NJ. There, more therapy, and finally a release to go home after another week.

William’s recovery was miraculous; no one expected his recovery to be so complete. I took him to CHOP three weeks ago, and the neurologist gave us a diagnosis of a complete recovery. His speech and comprehension are recovered in their entirety, and there is no residual weakness with his right arm or on his right side at all. He has some changes, in small ways, but nothing that is going to not allow him to function fully.

The doctors could not tell us why William had this stroke-the area of his brain that was affected by his stroke could not have been related to the particular area of the heart that was repaired. Now, there is not a doctor who can tell us why he has recovered completely. All of it was unexpected in our eyes, but Jode and I know God has used it to bring attention to Him. We discovered a deeper need we have for God than we ever knew we had before.

I want to close this out with two entries from our Care Page for William. In November, I wrote: “I was thinking of this very issue the other day, about how William is different in some ways now, when I remembered a verse. In Exodus 4:11, the Lord is speaking to Moses and it tells us, "11 The LORD said to him, 'Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the LORD?' " I also remembered how much God spoke to Job of how He created all things. I was so quickly reminded that it is GOD who has created William to be different now. GOD is the One who has changed Will in each tiny way, so that He will be revealed in William's life. Wow!

I pray each of us will remember all of this—the difficulty of this, the joy of it, the incredible way God has continued to reveal Himself, and how He is still sculpting William's life to His glory. I like to think of it like a sculptor—that moment when the Artist pulls off the sheet of His work, to reveal it to us, and we see the final purpose of all the work He did. I don't know when that moment will be, whether during William's life, or in heaven-I just know I am thankful that God chose this work in our lives. And thankful you are each a part of it.”

In concluding his Care Page, I wrote to our friends and family that God had chosen them also to reveal Himself to us. God has walked us through this, and our hope is you will see God entirely through all of this—His mercy, the message of His Son's sacrifice for each of us on the cross-to be able to share that at the hospital and here, how deeply His love runs, even in the hardest times. It is only because of Him that we have survived even one moment of this.