Our Life with John – Chapter 1
Posted on | April 26, 2011 | No Comments
Chapter 1
“Our little boy John passed away this morning. He had just finished another of his long periods of seizures Saturday afternoon and was sleeping soundly as he usually did in such cases. Kelly held John in her arms for the last minutes of his life, while we prayed and sang over him. Our sorrow runs deep, but we are finding peace knowing John is suffering no more and is rejoicing in heaven with his fellow saints.” – John Update, Sunday, April 26, 2009 10:44 AM
I awoke knowing Friday (April 24) was going to be a long day.
John had been gagging much of the night, still having problems handling the congestion in his nose or lungs—we weren’t really sure which. So I was up with him for much of the night, using the suction machine that I had grown quite used to. He had been gagging for about two weeks. His doctors said he didn’t have pneumonia, so we didn’t know what to do to stop it.
Getting out of bed, I took the two steps over to John’s nursery. He needed his 6 a.m. round of medicines and breast milk. I took care of that and changed his diaper.
John was not doing well, having started another one of his long seizure periods. This one was different from the previous week. In fact, it wasn’t always obvious that he was seizing. A lot of the time he just lay there awake with his eyes staring straight ahead. Which is much better than the convulsions we have grown used to. But he’d been awake for so long that he should have been exhausted and asleep. Something going on in his brain was keeping him awake, whether it was seizures or not we didn’t know.
John’s Birthday Video
Posted on | September 15, 2009 | 1 Comment
Click on the four outward pointing arrows if you want to view in full screen.
“What am I going to do without my aircraft carrier?”
Posted on | September 15, 2009 | No Comments
“What am I going to do without my aircraft carrier?”
William asked me this question multiple times last Saturday, shortly after we watched his beloved aircraft carrier float down the street and into the storm drain on its way to Shoal Creek. Even though it could barely float anymore, William had played with that plastic five and dime toy for years in the bathtub, and my heart broke for him as I helplessly watched it disappear down the drain.
In answer to his question, I spoke to him of God’s comfort and provision for us. But also told that sometimes that we just lose things and don’t understand why, but even so we must know that God is good.
William’s question was hard to answer, but a good one for us. For I realized even as I was speaking to him that trying to understand what our family is going to do without John is a question we still struggle with as we come to the first anniversary of his birth–Sept. 16, 2009.
“You always said you wanted three children.”
Posted on | May 26, 2009 | No Comments
“You always said you wanted three children.”
Kelly said this to me the other day. I hadn’t thought about it in quite a while, and certainly not in the context she put it. But she was right. William and John everyone knows about, but we also had a miscarriage in between. I asked for three children, and God gave us three children.
Kelly mentioned this as we were discussing a high school graduation ceremony we attended last week. A young lady from our church, along with two other homeschoolers, graduated during a beautiful ceremony in North Austin. During one part of the event, there were slideshows celebrating the life of each graduate with a series of photographs, often with their siblings.
During the slide shows, we were both saddened that William’s graduation slideshow won’t have photos of siblings growing up with him-at least as the future stands today. One day we will be blessed to see all three of our children together, but we will have to wait for that day.
Settling Down
Posted on | May 5, 2009 | No Comments
Things are starting to settle down a bit in our home after the wonderful outpouring of love and generosity we received last week. The services and reception were just beautiful and we can’t thank everyone enough for being there, attending to all the details, and lifting us up in prayer. It was a true testimony to the body of Christ and we are so thankful and hopeful that John’s life was focused on the glory of God.
The process of grieving is hard work, good work. And we know we must move through it. We continue to fluctuate between the peace we have knowing John is in perfect hands suffering no more and missing holding his chubby little body and caring for his every need. We miss singing to him and praying with and for him. We miss watching William sit next to him on the couch and snuggle up to him. We miss having him at the dinner table with us as he was hooked up to his feeling pump and we talked about our day with baby John and who came over to help care for him. We will treasure those memories always and as we heal, we will look joyfully upon those months we were able to have him in our home and surround him with love and care.
April Notes from Our Friends
Posted on | April 30, 2009 | No Comments
Friday, April 10, 2009 10:19 PM, CDT
I am still thinking of you guys and praying too. May you have a blessed Easter. He is risen!Love,
Lori
lori akin
Wednesday, April 15, 2009 8:56 AM, CDT
Dear precious Peacocks,
We love you and love reading about John. Thank you for encouraging us all in Christ Jesus. Praying for you today and always,
Jamie for all the Krufts
Jamie Kruft
Austin, TX
Saturday, April 18, 2009 9:11 PM, CDT
In prayer for you.
Amy Jo
Amy Jo Dunsmore
Sunday, April 19, 2009 7:26 AM, CDT
I was so anxious to hear how John was doing. Thanks so much for keeping us posted. We love you guys, pray for you and hurt with you.
Paula Lundgaard
Sunday, April 26, 2009 11:27 AM, CDT
We are so sad with you. We will be praying for you and for William in this hard time. Thank you for letting us walk alongside you throughout this time. You are a true testimony.
Love, The Beisners
Joelle Beisner
Sunday, April 26, 2009 2:21 PM, CDT
Dear Kelly, Bill and William,
We grieve with you at your great loss and pray the Lord will comfort you and bless you with His peace. You have been a blessing to us in sharing your difficult journey of faith and love as you have parented your precious little son.
Our thoughts and prayers are with you.
In His Love,
Vicki & Robert Goodrich
Robert Goodrich
Services for John
Posted on | April 27, 2009 | No Comments
Kelly, William and I want to thank everyone who has so generously loved us for not just the last day or so, but for the last seven months. And we are certain there will plenty of more love to be thankful for as the days pass. I guess we won’t know just how much impact John has had on the lives of others until we go to join him, but we are learning more and more about it. There will be much more to say and write as well in the future, but at the moment we just want to let everyone know the details about the service for John.
John Has Gone Home
Posted on | April 26, 2009 | No Comments
Our little boy John passed away this morning. He had just finished another of his long periods of seizures Saturday afternoon and was sleeping soundly as he usually did in such cases. Then last evening he started to have a hard time keeping his oxygen levels high. His nurse was watching him at the time, and called John’s pediatrician who came over. We then came home and discussed the situation with everyone. We decided we would continue to monitor John to see how he did. Everyone left about 11 p.m.
Then about 11:30, John’s palliative care doctor came by. John’s condition continued to change, so it wasn’t too long before she told us to prepare for the end. So Kelly held John in her arms for the last minutes of his life, while we prayed and sang over him. After he left us about 12:30 a.m., we woke William up to tell him that John had gone to be with his Father, and wasn’t sick or having seizures anymore. William is sad, but knows that his little brother is in heaven.
Finally Asleep
Posted on | April 19, 2009 | No Comments
John finally went to sleep around 11 p.m. last night. He woke up once during the night, but is soundly sleeping now. So the seizures seem to have come to an end.
We worked with one of the neurologists yesterday to figure out what dosage of seizure medication—some of which are sedatives—we could give John without too much risk of respiratory failure. But whatever we gave him didn’t stop the cycle. It seems like it was time that finally brought them to an end. For whatever reason, God decided that the seizures yesterday needed to run out their full cycle.
Pneumonia is also a concern. John has had upper respiratory congestion this week and was running a fever for much of yesterday. But Dr. Griggs, John’s pediatrician, came by and said that his lungs sounded pretty good. So we just kept shifting John around and patting his back throughout the day to make sure everything stayed clear. His temperature is gone today.
William is also sick. Maybe even the same thing that John has. But he is much better and staying in pretty good spirits, even though we had to cancel his birthday trip to the zoo yesterday.
Thank you for your prayers and notes of concern. We very much appreciate them. And need them.
Seizure Activity
Posted on | April 18, 2009 | No Comments
After a week in which John had very few seizures of significant duration, he is now undergoing a burst of seizure activity that has been ongoing for almost 24 hours.
The visible seizures are mixed in with brief periods where he is awake and seizure activity is not apparent and spots where he is asleep. Then he wakes up and starts all over again. This started yesterday morning about 10 a.m. and has continued on since then with little change, despite the dosage of drugs we give him to stop it.
Please keep John and our family in your prayers today. We’ll let you know of any changes in his condition.