Arrivederci!

Tomorrow at 3:30 we leave for Rome. We are so ready for some time away. If you want to track our journey you can click on: Warren and Brenda's Cruise. It will show you our cruise and our itinerary. I will give quick updates from this blog regarding our trip and David as I get information from home. Here is a picture of our ship:



David has had a good day. We were told he enjoyed school and tonight he ate a great meal. Right now he is watching Lion King with Dan Edsall. He has not been that anxious today which is such a blessing. The Nurse Practitioner who works with Dr. Mink at the Batten's Center in Rochester has been wonderful to work with. She is helping us tweak David's medications and his care.

Well still have a few things to get packed. My clothes are all sitting folded and ready to be packed in the suitcases. Brenda is still working on getting just the right outfits selected, folded, and packed away. Thanks to all who have prayed this trip would actually take place. We love you all.

The Weekend, Sept. 12 2009

Just a quick update. We are still tweaking David's meds. He is still struggling from 5PM to 9PM. Please pray for us to find the right amount of medication and the right time span between each dose to keep David content and able to enjoy life. This morning I took him out for breakfast and we had a good time. He has been loosing weight (12-15 pounds) so we are supplementing with drinks like Ensure to keep his calories up. We had an Occupational Therapist and Physical Therapist visit our home to help us with finding some adaptive equipment to help in his care. We need a wheelchair, power lift once he can't stand, a hospital bed, and some other things. They were very helpful.

We had a surprise visit from our son, Christopher, and his girlfriend, Brittney, last night. They drove from Boston to surprise us and just encourage us. I wrote in my journal this morning that it was like a very bright light in the midst of the dark pathway we have been walking. They came to hang out with Daniel and to just help. We are blessed to have very special sons. Often I ask you to pray for David, but please pray for Daniel and Christopher as well. It is very difficult to see their brother struggling. We also have been guilty of pouring all our energy into David, leaving the other two to fend for themselves. This is not good!



Tuesday we leave for our cruise. Everyone is stepping up to the plate to help care for David and help with Daniel. God is so good.

Looking for the right balance

The last few days have been a roller coaster ride. You know the feeling when you just crest the top of the first hill, your stomach drops, the scream escapes from your lungs without even knowing you are screaming, and you plunge towards the ground at 15o miles per hour. Our ride started with three days of David being inconsolable. We finally contacted our neurologist in Rochester after the Labor Day weekend and switched back to the Clonazapam, increasing his dose to help him not be so anxious, angry, and agitated. He slept well. Unfortunately the dose was too high and David was very very lethargic. He struggled to stay awake and it was difficult for him to eat or talk. Thankfully this wore off as the day went on. David actually went to school and we were told he did well. He does continue to complain about not feeling well which may be a result of one his meds, so after talking with his PA we are going to discontinue this one med. We are looking for the right balance of medication so David can enjoy life but not feel anxiety. Please pray we can find this proper leval.

Brenda met with the staff at Fayetteville Manlius High School yesterday and we were blown away at their love and concern for David. We can send David to school knowing he is going to be well cared for, his dignity respected, and loved. We can't say enough about how well the school has responded. They provided us with a wheel chair we can use until we find the right one for him.

As you know earlier I posted a question about whether we should go on our cruise next week. Since writing that post we have had so many people encourage us to go. Our current staff and others have steped up the plate to cover for us. There will always be two people in the house when David is here. My sister-in-law is making her self available and so many people have said they will help by bringing meals. We are blessed!

Finally, pray we can find a couple more staff to help with overnights and weekend coverage. Well dinner is waiting for me. Thanks again for lifting us up in prayer.

Exausted; in need of comfort!

Yesterday was a very hard today and it looks like we are headed into another one already. David continues to be inconsolable. He rolls back and forth, says over and over I am tired and I don't feel well, whimpers, cries, and doesn't like to be touched. We finally called the Dr. on call in Rochester and they wrote a script for Ativan, a drug used to help with anxiety disorders. We were told we could give him 1-2 tablets every 6 hours. We started with one because we didn't want to interrupt his sleep. It seemed to work for about three hours but then it started all over again. He finally fell asleep around 9:30 and thankfully slept through the night. This morning he is just as bad off as he was yesterday. We started him off with two ativan, hoping it will help him but not put him to sleep. He started being anxious and frustrated around 7:30 and it already almost 9:00 with no change. Please pray the meds or something helps. We are wondering if he is fighting a cold our bug again.

We are all feeling very beat up. As I write this I fear the day watching David struggle with no relief, I fear David's first day of school and whether he will be actually able to go, if he doesn't go what do we do, I fear not having enough reserve to care for the rest of my family, and I struggle with sensing God's presence. I prayed all day yesterday for God's peace and comfort and to be honest with you, failed to find it. I know it did not fall on deaf ears and I know God loves David and us, but I struggle knowing God could have brought David peace but didn't. I'm glad my God is big enough and loving enough for me to express my doubts and fears. I'm also having a little pity party. Since Friday at 9:00 PM we have only had 4 hours of staff coverage. Its Labor Day weekend, the weather is beautiful, and we feel stuck here. As I write this I sound like a cry baby but it is how we are feeling. Dan E. will be on today at 2:00 PM. For those of you who are praying for us please ask God for comfort; comfort for David's spirit, comfort for us as his parents who often feel helpless, and comfort for our boys.

Rough start to Saturday

Starting around 4:00 PM yesterday David has been anxious, frustrated, angry, and appears to be uncomfortable. As I write this he is asking over and over again "What is today's Odyssey?" No matter how we respond he just asks the question over again. He is unable to respond to any question you ask him. If you asked him, "David do you like liver and mushrooms?", which he hates, He said, "Yes." We are in need of an infusion of patience. Please pray for us and the aids today as we work with David that we would be gentle, patient, and would know how to bring comfort to him. Pray that David would be content. Ask the Father of compassion and comfort to touch David today.

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4who comforts us in all our troubles... 2 Corinthians 1:3,4



David on vacation in Door County, Wisconsin

"The twinkle in David's eye was back."

David's music therapist called us last night just to tell us how well he had done. She said, "The twinkle in David's eye was back." The two aids who had worked with David yesterday also said David really enjoyed himself and was happy. God is so good. There is no doubt in my mind that your prayers are making a difference. Please don't stop! As David enjoyed lunch and dinner out, train watching, music therapy, the movie, Annie, and lots of laughter, Brenda, Daniel, Katie and I went to the New York State Fair. As I am writing I can hear David out in the kitchen with Brenda and Laura asking for a cup of coffee, sounding very content and happy. He is already showered, already used the bathroom, and ready for breakfast. He still is not as chatty as he was, and we still miss his spontaneous laughter and comments, but he is so much more content. What a change from just a week ago.

Some of you have emailed me to say you don't know how to leave a reply or leave a note after one of my posts. At the bottom of each post you will find the word 'comment'. There may be a number before the word comment, indicating how many other people have already left a note. Click on the word comment. Scroll down until you see a box with the words above it, Post a Comment. Type your comment in the white box. When you are done click the words, Post Comment. That is all there is to it.

So lets try it. Brenda and I often hear people say, "David has made such a difference in my life.", or "My faith has really been challenged as I watch David and the joy he has.", or "Your family has really been a blessing to us." What do you mean? How has David's child like faith challenged you? How has the brokenness of David's situation and the way our family has responded helped you in your personal journey? We would love to hear from you.

November 2, 1999

This is the first date found in my journal. It was David's 11th birthday. A friend of mine gave me the journal after hearing me speak one Sunday on pain. She said I really needed to start recording my journey, thoughts and feelings. My biggest concern in starting to journal was starting and not continuing. In fact I jotted down that fear in my first entry. My next entry was 11/8/1999 followed by 06/11/2009! Ten years! I guess I'm a prophet.

Now I write on a daily basis. The counselor I have been seeing encouraged me to start writing letters to David as a way to express some of the things that get bottled up inside of me. I then share my letters with Brenda and we sit there and cry, pray, seek strength to deal with the pain of trusting God with our broken dream, the pain of David's loss and struggle, and the battle of saying, like Jesus did, "Your will be done, not mine!" I also journal how I am hearing from God as I read his word and other thoughts, verses, or questions that often fill my mind.

The following is an excerpt from my first entry on 11/02/99. It is a tiny glimpse or peak into the first few awkward steps in our journey.

A year ago this Thanksgiving, our second son, David Gregory Pfohl, was diagnosed with a hellish disease, Batten's Disease. He still doesn't know the the seriousness of his disease. David is legally blind. Two and a half years ago David was a normal sighted kid. He enjoyed reading, coloring, and all the normal things eight year olds like to do. It seems as if in the twinkling of an eye David plunged into the darkness of vision loss.

The pit I feel in my stomach as I write these words was magnified when the doctor told us the severity and untreatable nature of Battens. The feeling of helplessness was overwhelming. We walked to our car knowing that our lives had been for ever changed. We were numb. We felt betrayed by God. We didn't want to believe the doctors.

While we knew God was in control there was very little that we saw in those first few days that indicated any sense of control, care, or love from God. We cried daily if not hourly...We knew our thoughts were not clear. The pain was so real, so tangible you could feel it. It felt as if it would never go away. I would read a stupid Readers Digest article in the bathroom and begin to sob. I would lay in bed listening to Brenda cry so hard I thought she would die, yet I didn't have the energy or knowledge as to how to help her, so I would cover my ears and pray she would stop.

Every time David stumbles or can't find a toy sitting in front of him you are reminded of his loss. He no longer can see my face, to see my pleasure or anger. He often feels my face telling me I am going bald or I need a shave. I love those times.

From time to time I will share more of my journal with you. While the pain has remained a constant, our ability to see the hand of God has grown. We believe God is good and we believe God's will is best. Thanks for taking the time to read this.