One day at a time

Things have settled down at the Pfohl ranch. Chris left for Boston this morning, looking forward to see Brittney and get back to his studies and finding a job. Brenda has been in bed for three days with a very bad case of the flu. I have been playing nurse pushing water, tea, rest, and Tylenol. She also started taking Tamiflu. Daniel returned to school on Tuesday. Students and teachers have been very supportive.

We met as a family with a counselor on Tuesday. It was the same person we have been meeting with over the past year. We have now officially passed from Anticipatory Grief Counseling to Grief Counseling. One of the points she focused on is what she called the high jacking of your emotions. Man was she spot on. I can be cruising through the day, doing some mundane task, and all of a sudden be so overwhelmed with such sadness that all I can do is cry. I know that David is with Christ, I know that he is no longer suffering, and I know that we will see him again, but it hurts so deeply that he is no longer here.

She asked us if we have talked about what we are going to do with David's belongings. She encouraged us to not do anything until everyone is ready. What do you do with his button collection, his pencil sharpener collection, the Hess Trucks he got every year for Christmas, his pinewood derby cars, his walkie talkies, his Green Bay packer hats, his Yankee paraphernalia, his cheese heads, the hundreds of Odyssey CDs and tapes, and the list goes on. Each little item reminds us of a story or a "Davidism." I have a feeling we will be boxing and storing a number of his things until a later time.

All of us are feeling numb. Some of us want to cry but can't. Some of us feel we should be feeling sadder but we don't. Sometimes we will express being thankful we are no longer having to care 24/7 for David and then we feel guilty. We try to remember happier days but we get stuck thinking about the last few weeks of David's life. We are told this is normal. I don't like this normal but there isn't much I can do about it. So we keep talking with each other, we hug each other a lot more, I hear over and over again, "I love you", and we give each other permission to cry. Even one day at a time is overwhelming. Pray we hold on to each other, to our hope of eternity, for healing, and that the ripples of David's life will continue to impact many for Christ.

My Dearest David

Every day we look forward to opening the mailbox to read notes from people who loved David and love us. One of the letters we opened the other day was addressed to David. We thought someone must not have known he had passed away. I asked the friend who wrote it (a young lady just a few years younger than David) if I could share it on my blog. Her letter starts out, "My Dearest David..."

I hear word that you have made it home. In what other news might I find such tranquil peace? Nowhere, I assure you. My soul, although weighted with grief, is swooning over thoughts of the joy you must be finding now. And Oh, what joy that must be, as if the passion and energy you showed us on earth wasn't enough! And thus I've come to the first point I wanted to thank you for. For never letting me believe that true children of God live without vibrance, but rather are called to a life of expressive jubilance, just as you always showed me.

It is funny, David, living out here in ******. I am very far from my family, but very much in the arms of God. Getting an education from Bible College, they just can't talk enough at us about the impactful missionaries and upstanding organizations thriving in the Christian world. But, David, I just want to tell them about the missionary of the highest integrity I have ever come to know, YOU! I want to tell them of your elegant dance upon this earth, and of the vast audience you had, falling more in love with the Lord with each pirouette you did for us. Your fingerprints will remain stamped on the surface of my heart forever. And that is the true impact of a true missionary and so I thank you again.

Thank you for you. Our hearts are battered as we think about life on this earth apart from you, your laughter, your clapping, your joking. But the truth is, there is nothing better than the fact that you are home now. You have better eyesight than I, as I sit here with my glasses. you can probably play basketball better than Shaq now. And you are conspicuously happier than Bill Gates, Oprah Winfrey, and Brad Pitt put together. I love you deeply, and will never cease to.

Your story will be carried on forever,I make that a promise. I also promise to take care of your family to the best of my ability. (I love them deeply as well) I do not take a single lesson you taught me for granted. Thank you for the significance you have represented in my life. See you again when the time is right. I can't wait to look in your eyes and know you're looking back!

With all of the love that is in my heart,

Check out the video montage of David's life on Youtube!

My good friend, Kyle Dolbear, put together the following video montage of David's life. Many of you saw it at the service but for those of you who missed it here it is. Just click on the link below:

David's Video Montage

Today has been a quiet day. Dan went back to school, Chris is still hanging around, we had breakfast at Dave's Diner in honor of David, and we cleaned the house. I went for a motorcycle ride just to clear my head. We are finally getting a chance to read all the cards and notes people have been sending us.

At David's memorial service Doug encouraged everyone to take a few minutes and jot us a note and share how David impacted your life or a story you remember. I hope many of you take an opportunity to do so. Please use this blog or Facebook.

We are starting to hear stories of how God is using David's memorial service in people's lives. I am looking forward to sharing them with you!

David's memorial service is online

If you were unable to attend David's funeral or would like to see it again you can click on the following link:

David's Memorial Service

Some Pictures

The Pfohl Family

Dad and His Boys



Everyone's Favorite Picture of David


Chris and Brittney


Chris' former roommates, Adam and Nate

Wonderful celebration of a life well lived

Today's memorial service was awesome. There were over a 1,000 people who gathered to celebrate David's life. It was a time of worship, hope, inspiration, tears, laughter, and challenge. The verse we put on the bulletin was 2 Timothy 4:7-8:

I have fought the good fight, I have finished the race, I have kept the faith. 8Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day—and not only to me, but also to all who have longed for his appearing.

David fought well. He lived well. He taught all of us what is important. While we grieve we also rejoice. What a dichotomy of feelings! Today we were loved on, served, and reminded over and over again that God is good and in control.

Over the past two days we have hosted all of Brenda's family: Mom and Dad Bell, her two sisters, their husbands and kids, Dad's sister, and Christopher's girlfriend. It has been a blast. They served us and loved on us. We are so blessed to have such a wonderful family. My family as well hung out here. Most times we had over 30 people eating, drinking, playing, laughing, and telling stories.

I hope to post a link to a video that was played at David's memorial service so keep your eyes open. it is late and it has been a long day. We love you all.

David's Testimony

As we were cleaning out David's room we found a folder labeled David's Testimony. The only problem was it was in braille. Today Donna Richards, David's teacher of the visually impaired, came to our house to translate it. The best we can figure it he wrote this when he was in 7th grade. The following is what she wrote out for us:

David’s Testimony

When I was very little I enjoyed reading the bible a lot. My parents would read to me Bible stories and I loved them. I believe that when I was six years old I became a follower of Christ. I think it was when I was in Awana I realized I need Christ in my life to help me live a better life. So I accepted Jesus as my Savior. When I was seven years old I remember I started to lie a lot. I tried to be good kid but I was also a brat. Sometimes I am still a brat just ask my younger brother.

When I turned eight years I started to lose my site. Dad would yell at me because he thought I wasn’t looking at him. I was upset, sad, and didn’t want to talk to people. I would hide under the table for my vision teacher and cry, kick and scream. I didn’t really care for God. I thought God didn’t like me anymore. I thought he hated me. We had just moved from Poland, I lost all my friends, and my new friends were moving away. That was the year my mom was really sick when we were afraid she was going to die.

I started losing my site when I was in second grade. My first teacher was Mrs. Finkelstein. Even her name tells you what she was like. She was really not conscientious with my needs. I switched classes to Mrs. Gamble. She was my favorite. When I turned nine I started hating God even more. The reason was because I could not see any more. I started to be angry and sad all the time.

When I turned ten I realized my situation was not going to change. While I knew God loved me I still often would cry. Sometimes I would slam doors because I was mad. It was then I realized that God still loved me even with my blindness and that I could trust him and worship him and love him, even if I were to go totally blind. I turned back to God and gave my life to God all the way.

One of the gifts God has given me is my joy and love of God. I love people and I love to help people. Even in the hardest times God’s word says he will always love me and care for me. I hope you have learned through knowing me how to help others who have special needs. Lastly I want to tell you something important. Thank you for helping me with my walk of God. I need help to continue to walk closely with Christ. Thank you so much.

This was a second writing found connected to his testimony:

How are you doing, I really doing pretty good. I have had an extraordinary thing I learned in the service today. I learned that God should be the most important person in my life not girls, or baseball, not football or basketball. God really touched me today that love me so much. I really love him. I notice that I can’t count on that everything is going to go my way. Because it’s not a perfect world. I am glad that I am unique and I don’t look like any one else. We can’t take things for granted. We have our own problems, but we can lean all our cares under him. I know that God can handle all are troubles and cares. I really know now, and From now on I dedicate person even if they are not Christians. I can’t wait to find out what God is doing with this tragedy of my life, my sight problem. You know all the parts of my body. You know every hair on my head. When I am scared you are there, when I am laughing you are there, when I am sad You are there, When I am happy You are There, So God I give it all to you, So I can listen to your word, Your lamp is a lamp unto my feet and a light unto my path. Isaiah 41,10 Do not fear for I am with you, Do not be afraid I am your God, I will strengthen you and help you, And I will up hold you with my righteous right hand. Have I not commanded you, be strong and courageous, do not tremble or be dismayed, for The lord your God is with you wherever you go. God is true to his word, he would not lie, he is the perfect person, and he will come back like he promised. God wants people to except him in the whole wide world, not only America, every country in the world, not only the rich people or the fine dressed, but every one has a chance, As it says in John three sixteen for God so loved the world, That he gave his own son to die on the cross for us, I thank for that. My favorite bible verse is Psalm One. I want to give my self back to God and Jesus. He loves me so much. I know he loves every person on this earth, every person gets a chance. I would like to thank Mr. Bullock for his sermon that inspired this testimony. Love David Pfohl

David's Services

Click here to see David's Obituary. We will be celebrating David's life this Sunday, October 25th at 3:00 PM with a reception following. Come and join us as we remember a young man who lived his life well. The service will be held at Eastern Hills. The address is: 8277 Cazenovia Rd., Manlius, NY. If you want directions click on the address above. We are being loved on. Thanks for everyone prayers and support.

David is with Jesus

David went to be with his Savior around 3:30 AM on 10/22/09. It is well with his soul and ours.

2 Corinthians 5:1-5 Now we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. ²Meanwhile we groan, longing to be clothed with our heavenly dwelling, ³because when we are clothed, we will not be found naked. ⁴For while we are in this tent, we groan and are burdened, because we do not wish to be unclothed but to be clothed with our heavenly dwelling, so that what is mortal may be swallowed up by life. ⁵Now it is God who has made us for this very purpose and has given us the Spirit as a deposit, guaranteeing what is to come.

Still in the Hospital (Part 2)

Great Song with some great words. I will Rise by Chris Tomlin. Check it out. Just click on the link or go to: http://www.youtube.com/watch?v=wt6KvS5fJqY

Still in the Hospital

We did not go home today. David is still experiencing some discomfort and we are working on adjusting his medication. He at times is struggling breathing. Sometimes it seems as if he trying to cough or clear his throat. We don't know if it is due to the medication he is taking, a part of his disease, or some type of pain breaking through and it is the only way he can communicate he is uncomfortable. After being here at the new wing of the Galisano Children's Hospital we decided that we would rather stay here as long as we can. David is well cared for and we are able to simply be Mom, Dad. The staff here is incredible and the facilities are incredible. Chris is driving home to be with us. Brittney is flying in tomorrow evening. We still do not know when David will go to be with the Lord. We are ready for him to be with Christ. The hardest part is waiting.

In the Hospital

I am sitting in a hospital room at University Hospital with Brenda, Daniel, and David. We had a very rough evening and morning with David. He was in horrible psychic pain, rolling, crying, rocking, and yelling without end. It was one of the roughest mornings we have ever experienced. After talking with Hospice and our doctor from CompassionNet we decided to take him into the hospital to control his pain. We have sedated him with a med that he will remain on until he dies. They inserted a pic line (a permanent IV) which will allow us to return home tomorrow and manage his medication. He continues to not eat or drink. Thankfully with this new medication he will no longer be in pain. His other medications simply were not doing the trick.

Brenda is spending the night at the hospital with David. Daniel and I are going home and will return tomorrow morning. We are hoping to be discharged by 1 PM. We are surrounded by good friends and family. We are tired. God blessed us with a wonderful christian nurse. It is amazing how when we open our eyes and can look beyond the pain of our sitution how we see the hand of God in his many little blessings. Thanks for praying!

Psalm 33:20-22

We wait in hope for the Lord;
he is our help and our shield.

In him our hearts rejoice,
for we trust in his holy name.

May your unfailing love rest upon us, O Lord,
even as we put our hope in you.

Nothing wth rob our hope!

Nothing will rob our hope!

The following are the notes I used today at church to share with everyone what is happening with David. We are blessed to have a supportive church family.

As most of you know we have been on a thirteen year journey with our son, David, as he has battled an intruder and foe by the name of Battens Disease. It started by robbing him of his vision when he was eight years old and has continued to rob him physically, cognitively, and emotionally. A week ago Friday Brenda and I sat in my home office with our doctor as she spoke the words, “David most likely has six months or less to live.” As you can imagine it felt as if the air had been sucked from the room.

Thankfully the hope Doug just talked about is real and has given us something to hold on to as our little world has come crashing down around us. I’m not going to lie and say it has been easy or that we haven’t been angry, or thought that God didn’t care or that he was out of control. We have struggled with all these things and still are to some degree, yet we hold on to the sure and certain hope that one day soon David is going to again see, walk, run, talk, think, and no longer be in physical or emotional pain. While we don’t want him to go, we also don’t want him to be locked here in his broken body in this broken world. We know because of our faith in Christ and his that we will be reunited. That is our hope and nothing, not even death, will take it away

The last three weeks have been very difficult. David has cried and moaned and groaned incessantly. No matter what we tried we couldn’t get him to settle down. One day last week Brenda was beside herself in emotional pain as she listened to David groan for hours. She picked up her bible and she came to 2 Corinthians 4:16. Let me read to you a couple verses.

¹⁶ Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. ¹⁷ [David's body is wasting away. He has not eaten for five days and sipped only a few ounces during that same time. He is losing weight and quickly going down hill] For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. ¹⁸ So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.

Now we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. ² Meanwhile we groan, longing to be clothed with our heavenly dwelling, ³ [every time we hear David groan we picture him moaning for eternity and being with Christ.] because when we are clothed, we will not be found naked. ⁴ For while we are in this tent, we groan and are burdened, because we do not wish to be unclothed but to be clothed with our heavenly dwelling, so that what is mortal may be swallowed up by life. ⁵ Now it is God who has made us for this very purpose and has given us the Spirit as a deposit, guaranteeing what is to come.

And what is that purpose? To be clothed with our heavenly dwelling. And so we have hope! That soon David will shed his earthly tent and be clothed with that which is eternal, perfect, and good. In fact a couple weeks ago David was in his bedroom crying out, “I want to go home, I want to go home.” We too want that for David as well.

One of the hardest things I have struggled with over the past several weeks is what I called the silence of God. It felt as if no matter how hard I prayed, asked God to bring comfort, or bring peace to my family nothing happened. It was if God was simply standing by, listening, but choosing not to respond. It didn’t make sense. Yet the day the doctor said David was dying, I was ready to accept it. The silence and David’s suffering had prepared me to begin the process of letting go. While I wished God would have sent a simple email or write a message in the steam on my mirror, I am starting to see the wisdom of God in choosing to be silent.

We are scheduled to meet with Hospice on Tuesday and sign up for their services. We have no idea how long David will be with us. He has not been eating or drinking much at all so we are pretty sure it will not be long. If you want to follow our journey more closely you can go to a blog I started in August titled It is Well with My Soul. It is at www.davidpfohl.blogspot.com.

We appreciate you prayers and all the love you have showered on us. When David dies our goal is to celebrate David’s life and the hope we have that he is with Christ.

Hospice

Today we dipped our toes into the world of Hospice. It's purpose as stated in the information they left with us is as follows:

"Hospice of Central New York provides skilled, compassionate care to patients and their families coping with advanced illness and limited life expectancy. Care is focused on comfort rather than cure. We want to help people make the most of the time they have together, whether it is six months or six days."

We are hoping to officially register with them tomorrow. They are checking to make sure our involvement with them will not effect or cancel our current program and support staff. If you want more information on who and what Hospice is please click on the following links:

hospicecny.org

nationalhospicefoundation.org

dyingwell.org

As you can imagine there is a cacophony of emotions, feelings, and thoughts that parade through our minds and heart on a moment by moment basis. As David continues to not eat or drink much, as he sleeps more, and as he is unable to communicate his thoughts or feelings, we long for the day he is with Christ. On the other hand it is hard to imagine our home and family void of his presence. As I write this blog I hear David moaning and crying in his room with Brenda and our friend, Sue Craig. It makes me long for the day he will cry no more, as he is welcomed into heaven by his Savior. I can't imagine going through this journey without the sure and certain hope of eternity.

For the past two days David has been very sleepy and much more calm. We don't know if the medicines we are giving him are finally building up in his system or he is simply slowing down. He still has periods where he cries out and moans. He has also started to have what appear to be mini seizures where he seems startled, his legs begin to shake, and he is very wide eyed, almost as if he were frightened. Please pray this stops.

Many people ask how we are coping. Friends and family are providing food, some are cleaning, cards are coming in the mail, and we are learning to not expect to get as much done as we once did. We have a great staff who love David, Compassion Net is pouring out their support, and Brenda and I are holding strong. It has been tough on Christopher and Daniel. Christopher has the support and love of a wonderful young lady by the name of Brittney, Daniel is surrounded by good friends like Katie and Josh. We feel tired all the time. My work is both a relief and a challenge. Keep praying. Thanks for loving us!

"Six Months or Less"

These are the words a doctor we met with on Friday spoke to us. Shocked, numb, relieved, sad, overwhelmed, at peace, and hoping she was wrong were feelings that coursed through our veins in a matter of seconds. She went on to say that David's disease is progressing at a rapid rate and his body is simply slowing down. He has not been eating much of anything and drinking little as well. Our goal is to simply help David be as comfortable as possible. We have no idea how long David actually has to live but we are going to make the most of the time we have with him. At times we get little glimpses of the David we all know and love. He laughs at some of the weirdest things. Asking him if he wants a cigar and whiskey normally always gets a small smile.

We have decided not to use a g-tube. When David asks for food or water we give him as much as he wants, but forcing it into him will only make him feel more uncomfortable. His not eating and drinking are a result of Batten's disease. Forcing him to take food or liquids might prolong his life, but it would only prolong the place of suffering he is often in.

Chris and his girl friend, Brittney, were here this weekend. We took them and Daniel out to pick apples, had dinner together, and then we shared with them what the doctor said. It was hard, but we were all in agreement we don't want David in the place of suffering he is currently in. We rest knowing that this is not the end for David. Our faith in Christ, our faith is the resurrection give us hope. David will see again, walk again, communicate again, and all the why questions he has ever pondered related to his disease will be answered. I look forward to that day.

We are still working at trying to find just the right combination of drugs to keep him from being anxious, sad, and emotionally overwhelmed. He is on three medications which for the most part are helping him. There are still periods of time where he cries, rocks back and forth, and whimpers. Pray these periods of time would come less and less.

We rest knowing we are covered in prayer, supported by a loving family, friends, and church, and upheld by a God who is always there for us.

Home Sick From School

Very hard day, nothing calming him down. Went to school but came home very sad, crying, and with a temp. Nurse came to check on him. Temp of 101. The new meds prescribed are not working to bring him comfort. Our neurologist, family doctor, and the doctor who works with CompassionNet have all talked today and it looks like we are going to try a new course of meds. Pray this works. David is also struggling eating and drinking. It looks like we are going to have to make a decision regarding a g-tube. Very hard decision.

On one hand I am sorry this is always bad news, but it is the only news we have to share with you right now. Thanks as always for your prayers.

Some of you are still wondering what you can do to help. How about sending David a funny card and just thinking of you. Here is his address:

David Pfohl
4440 Brickyard Falls Rd.
Manlius, NY 13104

The Silence of God

Why Lord, do you stand far off? Why do you hide yourself in times of trouble?
Psalm 10:1

How long, Lord? Will you forget me forever? How long will you hide your face from me? How long must I wrestle with my thoughts and day after day have sorrow in my heart? Psalm 13:1,2

The silence of God is painful! We cry out in prayer, knowing He hears us, knowing he loves us, knowing his will for our lives and David's is good, acceptable, and perfect, yet it feels as if He is standing far off, hiding his face, as we wrestle with a depth of sorrow we have never experienced before. It doesn't make sense. It is raw.

Thankfully I am not the only one who has experienced God's silence. I'm not alone. I'm not being punished. Sometimes for reasons beyond my imagination God remains silent. I hold David in my arms for hours on end as he cries, begging God for just a moment of rest and peace, but no reply. I plead that God would help the doctors discover the right combination of medicine to bring a peace and contentment to David's life, but David still goes to bed yelling and crying every night. All I want is for David to not be in pain, yet my prayers seem to bounce back like an undeliverable piece of mail.

YET

"You are enthroned as the Holy One,
You are the praise of Israel.
In you our ancestors put their trust,
they trusted you and you delivered them.
They cried to you and were saved,
in you they trusted and were not disappointed."
Psalm 22

We know He can be trusted, we know we ultimately will not be disappointed, and we know David will be delivered from this horrible place. Pray for us in these moments of silence.

Today we drove to Rochester to see our neurologist who specializes in Battens Disease. We had high hopes but returned frustrated with few answers. We are still working on trying to figure out the right medications and dosages. It is so complicated. We are trying a new medication that we hope will bring him some peace. Last night it really mellowed him out. Today it worked for an hour. The remainder of the day he was inconsolable. We are going to call the doctor tomorrow and see what we should do next.

As always, thank you for your kind words and your prayers.

Tough Sunday

David has cried non-stop since 10 PM last night. Thankfully he slept from 12AM to 6:30AM. We almost took him to the emergency room this afternoon. We had a doctor and a nurse who are a part of CompassionNet come to our house and check him out. She actually prescribed him morphine but it didn't touch his pain. This led her to believe it is either a reaction to the antibiotic he is on or he has some type of a stomach bug. We are using Tylenol and peptobismal. It is 8:00PM and he is still crying and calling out for mom. When you read this please pray for David's relief from pain,for our sanity and for Daniel's.

(UTI) Urinary Track Infection

We have been home now for four days and it feels as if we are just getting our feet back under us. We had a wonderful vacation and are happy to be home with our boys. David unfortunately came down with a urinary track infection and it has really knocked him for a loop. We have him on an antibiotic but he is miserable. He has been very weepy and again inconsolable. We are praying that as he feels better physically that he will feel better emotionally. Please join us in praying for this.

Tonight Laura, one of our aids, took David for a long car ride and he came back happy. For the first time since returning from our cruise he went to bed without crying and moaning himself to sleep. What a praise! We also just added a new person to our staff, Susan Craig. She is doing two overnights and is an answer to prayer. She is a nurse, gentle, caring, and a woman who loves God and David.

Well, this is short but I wanted to update you. We are working at sorting though all our pictures and will post them somewhere so you can see them.