Caring 4 Krabbe Kids
A Resource for Families Dealing With Krabbe Disease

Witness & EOL Planning

Witness & End of Life Planning

If not for Jesus Christ, and our firm knowledge that Dylan would be and is now with Him, we would not have made it to today.  We would not have our marriage, our family intact, our sanity, or our relative emotional well being.  We know beyond a shadow of a doubt that Dylan is with Jesus, and fully restored to health, with no crying and no pain. 

A)    Are YOU a Christian?  Are you certain that if you died today, you would go to Heaven?  If not, here are the essentials to this life-changing decision: 

1)    Many people are confused about the way to God. Some think they will be punished or rewarded according to how good they are. Some think they should make things right in their lives before they try to come to God. Others find it hard to understand how Jesus could love them when other people don't seem to. But I have great news for you! God DOES love you! More than you can ever imagine! And there's nothing you can do to make Him stop! Yes, our sins demand and deserve punishment - the punishment of death and separation from God. But, because of His great love, God sent His only Son Jesus to die for our sins.
"God demonstrates His own love for us in this: While we were still sinners, Christ died for us." Romans 5:8

2)    God desires to have an intimate relationship with us.  We are created BY God and we are HIS children.  We know how a parent loves a child, right?  Well that is how God loves us.  We want our children to love us, right?  God also wants love from His children.  We want to spend time with our children, right?  God also wants to spend time with us.  God desires an intimate relationship with us, but we cannot obtain it through our own efforts.

3)    We have a problem.  Our sin separates us from God, leaving us spiritually empty and searching for a way to fill the void. 
Romans 3:23  "For all have sinned and fall short of the glory of God."
It is impossible for us to find peace with God through our own efforts. Anything we try to do to obtain God's favor or gain salvation is worthless and futile.

4)    Salvation then, is a gift from God.  We cannot earn it.  God offers the gift through Jesus, his Son. By laying down his life on the cross, Christ took our place and paid the ultimate price, the penalty for our sin -- death.  Jesus is our only way to God.
John 14:6  "Jesus told him, "I am the way, the truth, and the life. No one can come to the Father except through me."
Romans 5:8  "But God demonstrates his own love for us in this: While we were still sinners, Christ died for us."

5)    The only thing we must do is respond to God's call.  So specifically, how do you become a Christian? 

a       Admit you are a sinner and turn away from your sin.
Acts 3:19 says: "Repent, then, and turn to God, so that your sins may be wiped out, that times of refreshing may come from the Lord."
Repent literally means "a change of mind that results in a change of action", (turning away from sin). 

b      Believe Jesus Christ died on the cross to save you from your sins and give you eternal life.
John 3:16 says: "For God so loved the world that he gave his only Son, so that everyone who believes in him will not perish but have eternal life." (NLT)
In John 14:6 Jesus said: "I am the way, the truth, and the life. No one can come to the Father except through me."

c       Confess that Jesus is Lord and God of your life.  Surrender control of your life to Jesus and receive Him as your Savior forever. 
Salvation is by grace, through faith. There’s nothing you did, or ever can do, to deserve it or earn it. It’s a free gift from God. All you have to do is receive it!
Ephesians 2:8 says: "For it is by grace you have been saved, through faith — and this not from yourselves, it is the gift of God."
Romans 10:9-10 says, "If you confess with your mouth, 'Jesus is Lord,' and believe in your heart that God raised him from the dead, you will be saved. For it is with your heart that you believe and are justified, and it is with your mouth that you confess and are saved."

d      Pray.   Prayer is simply talking to God.  You can pray using your own words.  Or you can pray something like this:
"Lord Jesus, I know that I am a sinner and I do not deserve eternal life.  But, I believe You died and rose from the grave to make me a new creation and to prepare me to dwell in your presence forever.  Jesus, come into my life, take control of my life, forgive my sins and save me. I am now placing my trust in You alone for my salvation and I accept your free gift of eternal life."

e      At this point, it is best to tell someone about your decision.  Now is the time when you can start relying on God to be your strength.  You can talk to him (pray), tell him your fears (he already knows them anyway), and ask for His help. 

B)    One of your biggest struggles is probably “Why????????”  :

1)    Why MY Child?  Why MY family?  My dear friends, there is no good answer for this one.  We would encourage you to not get bogged down in “Why?”.  We asked God this many times.  We finally realized that regardless of what the answer is, it would not satisfy us or be a good enough reason for it to happen to OUR son.  What if God said “It was to save 100 lives”.  Would that be good enough?  No, we would still want our son to live.  What if God said “It was to save 100 people from going to hell”.  Would that be good enough?  No, not for our son to die.  We would still change it if we could.  Is that selfish?  Absolutely.  But then think about the sacrifice that God made in sending HIS Son to earth to die a lowly death on a cross.  HOW could He have done that?  I certainly could not have.  But that shows how much He loves us, that He sent His Son to die before we even believed in him.  When we get to heaven, we will find out Why.  Until then, struggling with Why is futile and a waste of energy.

2)    There is a book called “Why?” by Anne Graham Lotz, which is excellent.  A short version of her explanation is  “There is sometimes a greater purpose to suffering than being relieved from it.  For the child of God, suffering is not wasted.  We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.  If God were small enough for us to understand, He would not be big enough to save us.”

3)    James Dobson wrote an excellent book entitled: When God Doesn’t Make Sense. Here are a few excerpts:

a      “Clearly, unless the Lord chooses to explain Himself to us, which often He does not, His motivation and purposes are beyond the reach of mortal man. What that means in practical terms is that many of our questions-especially those that begin with the word WHY-will have to remain unanswered for the time being”.

b       “…there will be times in every person’s life when circumstances don’t add up-when God doesn’t appear to make sense.”

c       “Even in the most terrible of circumstances, however, God’s plan is wonderful because anything in harmony with His will ultimately “works for the good for those who love Him, who have been called according to His purpose” (Romans 8:28)”.

d      “It is an incorrect view of Scripture to say that we will always comprehend what God is doing and how our suffering and disappointment fit into His plan. Sooner or later, most of us will come to a point where it appears that God has lost control - or interest - in the affairs of people. It is only an illusion, but one with dangerous implications for spiritual and mental health.  Interestingly enough, pain and suffering do not cause the greatest damage.  Confusion is the factor that shred’s one’s faith”.

e      “I am convinced that these and other biblical examples were provided to help us understand a critically important spiritual phenomenon. Apparently, most believers are permitted to go through emotional and spiritual valleys that are designed to test their faith in the crucible of fire.  Why?  Because faith ranks at the top of God’s system of priorities. “

4)    The below is a precious little story, which is only one of the myriad of ways to think about suffering and pain, and the question “Why?”.  Our Dylan was a Brave Little Soul, and your child most certainly is too. 

The Brave Little Soul
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all.

Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity." Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.” God and the brave little soul shared a smile, and then embraced.

In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

C)    If you ARE a Christian, you probably have some questions.

1)    Isn’t God supposed to save us from these troubles? 
Our study Bible (Life Application Study Bible) has the following to say about troubles:
"Our troubles can be helpful because they :

a      humble us

b      wean us from the allurements of the world and drive us back to God

c       vitalize our prayers

d      allow us to experience more of God's faithfulness

e      make us more dependent upon God

f       encourage us to submit to God's purpose for our lives, and

g      make us more compassionate toward others in trouble. "
So CAN God take away all our troubles?  Absolutely.  But IS God going to take away all our troubles?  Highly Unlikely.

2)    If God Loves Me, how could he let my child die?
My precious friend, God let his OWN Son die to save YOU. 
John 3:16 says “For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life”. We grew up believing that Jesus had made the ultimate sacrifice by dying on the cross. It is now so clear to us that GOD made the ultimate sacrifice. It would be less difficult to die than to watch your son die. God had to watch his son for 33 years, knowing the ultimate outcome was his son’s horribly painful death on a cross. God did this willingly for all of US, people that were not even born yet, many of whom will reject the sacrifice they both made. We have a new understanding and appreciation for the depth of God’s love for us. We cannot fathom being willing to watch our son die, if there was anything in our power to stop it. Yet God did that. Incomprehensible. “Your love, O Lord, reaches to the heavens, your faithfulness to the skies.” Psalm 36:5

3)    Could things possibly get any worse? 
Yes, things can always get worse.  Take a good look at the book of Job.  Job had 10 children who died, he lost all of his animals/wealth, and yet Job never cursed God.  The famous quote "The Lord giveth, and the Lord taketh away" came from Job's mouth.  Job also said “Though He slay me, yet will I trust Him.”  In studying Job's life, we find that Job never blamed God. 
(In the end, Job was "restored".  He had 10 more children and his animals/wealth were doubled.)  The Bible is full of terrible tragedies that happened to God’s people. 

4)    What about Death?:

a      Quotes from Rick Warren’s book The Purpose Driven Life

  • “Your earthly body is just a temporary residence for your spirit. The Bible calls your earthly body a “tent”, but refers to your future body as a “house”.
  • You may feel it’s morbid to think about death, but actually it’s unhealthy to live in denial of death and not consider what is inevitable. Only a fool would go through life unprepared for what we all know will eventually happen. You need to think more about eternity, not less.
  • If you have a relationship with God through Jesus, you don’t need to fear death. Rather than being the end of your life, it will be your birthday into eternal life.
  • When you fully comprehend that there is more to life than just here and now, and you realize that life is just preparation for eternity, you will begin to live differently. You will start living in light of eternity, and that will color how you handle every relationship, task and circumstance. Suddenly many activities, goals, and even problems that seemed so important will appear trivial, petty, and unworthy of your attention. The closer you live to God, the smaller everything else appears.
  • When you live in light of eternity, your values change. You use your time and money more wisely. You place a higher premium on relationships and character instead of fame or wealth or achievements or even fun.
  • In heaven we will be reunited with loved ones who are believers, released from all pain and suffering, . . . . .” 

5)    When my child dies, will he become an angel?  No.
Most people have likely not given it much thought, but we have, since it is so near to our hearts now.  What happens to us when we die?  Do we become angels? Nowhere in the Bible does it say that when we die, we will become Angels.  Angels are mentioned in the Bible almost 300 times.  Here are a couple of those references:

a      Hebrews 1:14 says “Are not all angels ministering spirits sent to serve those who will inherit salvation?” The note in our Life Application Study Bible elaborates: “Angels are God’s messengers, spiritual beings created by God and under his authority. They have several functions: serving believers, protecting the helpless, proclaiming God’s messages, and executing God’s judgment.”

b      1 Corinthians 6:4 says, “Do you not know that we will judge angels?” The “we” in the verse refers to the believers.

6)    How will we survive the death of our child? 
We have been asked how we have survived it.  The bottom line is – the only way we have survived this loss is the absolute CERTAINTY that Dylan is dancing his way through heaven.  His physical losses have been restored.  We have said it before, but the visual gives us comfort.  Dylan is “Dancing With the Angels, Walking in New Life”, as the song by Monk & Neagle says.  That gives us strength to go on.  For that, we can be happy for Dylan.  We have this inscription from the song “Homesick” by Mercy Me inscribed in a marble bench at Dylan’s gravesite: 

“In Christ, there are no goodbyes.
 And in Christ, there is no end.
So I hold onto Jesus, with all that I have,
to see you again.  To see you again”. 

End of Life Planning:
This topic is unthinkable, unspeakable, and un-writable.  And yet we must do all three.  Fairly early in Dylan’s life (before he turned 2), we decided that we could not have this issue hanging over our heads.  That it would be its own “pall” over our emotions.  We decided we wanted to address it and set it aside “until the time comes”.  We were so very glad that we did some initial planning, but in our minds, we felt we had gotten farther than we did.  So when the horrible day came, it really helped that plans had been made, but we wished we had done even more.  There were an overwhelming number of decisions that had to be made in about 3 days.  We hope that these thoughts will help you focus and organize a torturous process, whether you are doing it early or because the time has arrived.   

A)    Our first decision -  where will our precious son be buried?  (Cremation was never an option for us, but it might be for you.)  We wanted a place to go to visit at Dylan’s final resting place (and the thought of describing cremation to Dylan's brothers and sister was clearly not an option for us).  The factors to consider were:

1)    What location (City/State)?  Do we consider this our final home?  Will we be moving in the future?  Should he be with extended family members already in a cemetery?

2)    Do we want a headstone or a flat place marker?  Most cemeteries do not have both.   We felt it important to do the headstone because we wanted it to be beautiful. 

3)    How far will we want to drive to visit the gravesite regularly? 

4)    What restrictions does the cemetery have on what you can do?  We wanted to be able to plant flowers or display anything we felt led to do. 

5)    How public or private is the location?  Is there a lot of traffic?  Picture your comfort level sitting at the gravesite crying.
Ultimately, we chose a country cemetery about 20 minutes from our home.  It is old and small.  We bought 8 plots so that we could be buried there also.  We bought extras, because if, God forbid, anything else should happen, we would want to all be right together.  We also wanted room to put a bench. 
We were very fortunate to have Dylan’s social worker (Trisha) volunteer to assist us in selecting a cemetery.  The thought of doing this ourselves was too much to bear.  After discussing our general desires, Trisha visited a number of different cemeteries and provided us with three locations she thought we should visit.  This was a labor of love that we will always be grateful for.

B)    Select a Funeral Home to coordinate your services – Again, Trisha assisted us in this process.  We would suggest that you find someone to help you – whether a social worker or a good friend.   Friends are often looking for practical ways to help.  Trisha spoke with a number of local funeral homes and found the one she felt would be best for us.  Although we might not have been comfortable discussing such matters, Trisha found that one of the funeral homes provided services for children at a dramatically reduced cost versus the cost of a typical service.

Once the funeral home was selected, we had a name and phone number for a contact person at the funeral home.  We were able to locate this name the day Dylan died and the person we spoke to already knew who we were, and generally what plans we had in mind for Dylan. 

C)    Plan the “type” of services you want to have – Deciding, generally, what type of services you want to plan will help you prepare of list of people to invite and will also assist you in gathering information (photos, video, etc.) that you may use during the services.  The factors to consider were:

1)    Do you want to have a typical ‘visitation’ at a funeral home?  Be sure to consider the emotional state you and your family will be in immediately following your child’s death and whether having a long (or more than one) visitation will be good for your family.

2)    Do you want to have a funeral service before your child’s burial and, if so, will you have that at the funeral home, church or graveside?

3)    Do you want to have a service at the actual burial of your child?

4)    Do you want to have a memorial service for your child?

We ultimately decided to have a brief ‘visitation’ at the funeral home for only family and very close friends.  This service, while Dylan was there in the room with us, was the most emotional of his services and; as such, we decided to make the visitation short (2 hours).

We did have a funeral service at the funeral home, where our pastor spoke briefly.  Dylan’s burial followed and was very short.  We sang “Jesus Loves Me” and our family placed roses on Dylan’s casket.  Dylan’s memorial service was held at our church a couple of days after the burial.  We had a long list of people to notify for this service and it was also open to the public (as posted in the newspaper).  We felt having a day between the services gave us a little time to calm down and settle our emotions a bit.

D)   Determine the invite list for your services – Although your list may change over time, we found it was much better to think about who we wanted at each type service, during a time we weren’t burdened with the many other decisions that must be made after your child’s death.  I’m sure we were also much less likely to have forgotten someone by planning ahead.  Things to consider:

1)    Your child’s services are meant to honor your child and help you heal.  You shouldn’t feel the “need” to invite specific people.  Focus on the people most important to you and your child.  Focus on who will provide strength and comfort for your family, not on who would be “offended” if they aren’t “invited”.

2)    Along with the list of people to invite, add email addresses and/or phone numbers for each person so it is easy to communicate with that group when the time comes.  This task can then be assigned to someone else when the time comes. 

3)    We decided we wanted a small group at Dylan’s visitation and burial, which were much more personal and emotional.  Dylan’s memorial service was two days after his burial and we included a much larger group for the memorial service, held at our church (our notice in the local newspaper, for example, only mentioned the memorial service).

4)    Consider picking a date once or twice each year to look at your end of life planning notes and update those.  The people important in your life will very likely change over the course of your child’s life.  You may also change the direction you want to take with your child’s services and a periodic revisit will avoid a panic once the day arrives.

E)    Make specific plans for each of your child’s services – As stated previously, we did make some specific plans for Dylan’s services.  We did not visit those often enough; however, and we found that after Dylan’s death, we still had a significant amount of planning to deal with.  Be sure to commit to paper as much as possible in terms of what you wish to do to celebrate your child’s life.  Some things to consider:

1)    Timing of services – Dylan died very early in the morning on a Tuesday.  We weren’t able to do much other than grieve that day.  We allowed ourselves all day Wednesday and Thursday to plan for his services.  We held his visitation, funeral service and burial on Friday afternoon.  Dylan’s memorial service was held on Sunday afternoon.  You should consider whether people important in your life will need to travel from out of town and also consider how long those people will be able to stay in town.  We found that a one day break between services was very important to us emotionally.  We also needed that day to finalize plans for Dylan’s memorial service.

2)    Consider whether you plan to show a slide-show of photos and/or video during any of your services.  If so, consider locating a friend ahead of time that is willing to commit to putting together the video/slide-show when the day arrives.  Amy kept a folder of “the best” Dylan photos during the years of his life.  A friend whittled it down from 2,000.  How do you reduce 5 years of your child’s life to 30 photographs?  We finally settled on 350.  We did not plan ahead to find someone who could put the photos into a slide-show for us and as a result, we were scrambling to find someone at the time.

3)    Determine whether you may need the services of a third party and, if so, contract with them ahead of time for what you need and the cost.  We released 500 helium balloons following Dylan’s memorial service.  We found someone ahead of time who could provide that quantify of balloons any day of the week (we ultimately needed them on a Sunday).  This was a beautiful part of the ceremony.  One of Amy’s friends volunteered her vocal group to sing acapella as the balloons were released.  We didn’t think about this idea ahead of time, and we actually have no idea what songs they sang. 

4)    Consider who you may want to speak at your child’s services and discuss with them to ensure they are willing to do so. 

5)    Outline generally, the content of the various services – We realized when planning Dylan’s services that most typical funeral/memorial services talked about what the person who had died had accomplished during their lifetime.    Since most Krabbe affected children will have led short lives, the ‘accomplishments’ were not traditional.  We found that through our site, Dylan had touched many people’s lives in profound and unusual ways.  Long before Dylan’s death, we asked Phil’s brother to regularly review the postings on Dylan’s Caringbridge guestbook and to pull out quotes.  There were categories such as Dylan’s impact on other children, on the relationships other parents had with their children as a result of knowing Dylan, on the way people prioritized their lives, etc.  These were posted on a big screen (as part of his photo slide-show) during Dylan’s memorial service.  All of these were a meaningful reflection of what Dylan had accomplished in his short time on earth.  But we were so glad it was prepared ahead of time. 

6)    Music & Singing – Consider what specific songs you may want to have performed at your child’s services.  Also consider a list of relevant or important songs that you may want to have playing during your child’s visitation.  This is one area we did not plan for ahead of time and, in hindsight, would have done differently if we had more time.  When you consider people you want to ask to sing or speak, consider their grief at the time also.  If it is a close family member, they may not be able to get through it. 
Here are a few song suggestions, some of which we used:

a      Homesick – by Mercy Me

b      Dancing with the Angels – by Monk & Neagle

c       I Can Only Imagine – by Mercy Me

7)    Flowers & Donations – consider whether you want people attending the services to send flowers, or whether you wish to have donations made in the name of your child to charities of your choice.  We decided that we did want some flowers at Dylan’s visitation, graveside and memorial service.  As such, when we emailed friends and family about Dylan’s visitation, funeral service and burial service, we indicated the address at the funeral home where flowers could be sent.  In the newspaper notice of his death (posted in local newspapers by the funeral home) we specifically indicated the charities where donations could be made (thereby reducing the additional flowers at the memorial service).  We left some of the flowers from his visitation at the grave site and had some of them taken to our church for the memorial service.

8)    Obituary:  Consider drafting the newspaper notice of your child’s death.  Without specific guidance, the funeral home will ask you to complete a questionnaire listing surviving family members and they will draft the notice.  We wanted to be more involved in the content of the notice and provided the funeral home with exactly what we wanted to say.  But to be honest, this was one of the hardest things we have ever had to do.  We also selected a photo of Dylan and provided this to the funeral home to use with the notice.  Here is a copy of Dylan’s obituary, in the hopes it will give you a place to start: 
May, Dylan Thorn. Our precious boy passed away peacefully in our arms at 5am on January 6th. He was 10 days shy of his 5th birthday. Dylan was a strong and brave little boy who fought Krabbe disease, a terminal enzyme disorder in the central nervous system. Dylan more than tripled the doctors’ predictions of his length of life.
Dylan’s life story is online at Dylan spent his life at home with his family: parents, Phil & Amy; brothers, Jackson & Conner; and baby sister Sophie. He was a fighter and an inspiration. His smile lit up the room and our lives. Dylan had huge blue eyes that were a window into a soul that inspired us with love. Dylan’s curls were luscious and his laugh one of our greatest rewards. Dylan’s favorite thing in the world was to be held, so as a family we made that a priority. He was our little snuggle bunny and we treasure those hours. Dylan’s spirit manifested the gentleness of Jesus Christ. Dylan drew us and many others out of the busyness of life and into what is important. We praise God for we know that Dylan’s sweet soul is in heaven and his body has been fully restored, where there is no sickness, no sorrow, no crying and no pain. Our little boy is dancing with the angels. Though Dylan’s time on Earth was brief, he made an everlasting imprint on the lives of those who knew him, and many who did not. We love you Dylan, forever and ever and ever.
Please join us to celebrate Dylan’s life, to mourn our loss and to Remember Him Well at the People’s Church sanctuary (Murfreesboro Rd., Franklin TN), Sunday 1/11/09 at 2:00. The Memorial Service begins at 3:00. Flowers can be sent to Brentwood Roesch-Patton Funeral Home at 9010 Church St. East, Brentwood TN 37027. In lieu of flowers, donations can be made to fight Krabbe disease at

9)    Service “Programs” -    consider drafting a program to hand out to all that attend your child’s memorial service.  The program gave us the ability to express our appreciation to everyone that supported us during Dylan’s life and also gave us a chance to quote some favorite Bible verses, to include some photos of Dylan, etc.  Again, finding someone who can assist in drafting and finalizing the program ahead of time will give you the chance to prayerfully consider what you want to include and avoid later regrets.  It was important to us for people to have something tangible to take with them to remember our precious boy. 

10) Pall-bearers – Plan ahead for the number of pall-bearers and who you wish to ask to perform this service for your child.  Keep in mind that the casket is small.

If you would like to view our son Dylan’s memorial service, here is the link.  (There are 6 parts)  We hope it can help you with ideas so you spend less time struggling with this horrible task.  If nothing else, we would like you to see the hope displayed throughout.

F)    Items to leave with your child – we know that many families bury children with their favorite stuffed animals, blankets, etc.  Think about what you want to leave with your child, but also consider which of those articles may be very important for you to have in the future to remember your child (such as a favorite blanket or outfit).  Each of our children gave up one of their own stuffed animals to bury with Dylan. 
Another decision that needs to be made is what your child will wear.  This probably cannot be decided ahead of time, as sizes will change. 

G)   Plans for the day your child dies – Dylan’s death, the actual day he died, came very unexpectedly for us.  Although we knew the day would come, we had not given very many specific thoughts to what we needed to think about and do on “the” day.  If your child dies at home, some of these plans are even more important.  Things to consider:

1)    Who to call?  Create a very short list of people to call when your child dies.  If your child dies at home, first on the list should be your hospice organization or your child’s primary doctor.  In Tennessee, like many states, your child needs a doctor to visit and “pronounce” death.  You may also wish to ask one friend to call all other immediate friends and family that you want to notify.  Discuss with your designated friend ahead of time and provide them with a list of people (and phone numbers) you want notified when the day arrives.

2)    Think about want you want to do with your child before he/she leaves your home.  We made sure each of our other children had a chance to hold Dylan and to kiss him goodbye.  While that may sound morbid to some, we felt our children needed this opportunity to fully understand that Dylan was leaving his earthly home forever.  It was much more natural to hold and touch him at home than at the funeral home.  We gave Dylan a sponge-bath, washed his hair and changed him into some of his favorite pajamas before taking him to the funeral home.  Other things that were suggested to us:  rocking, reading a last story, bath, etc.  As painful as it is, you should consider it now because it will be a fog when the day comes and you can’t go back to redo it.  We are at peace with how we said our final goodbyes to our precious son. 

3)    Consider how your child will be transported to the funeral home.  Typically, funeral home representatives will be called and will come to your home to take your child.  As we considered that process, we decided that handing Dylan to a stranger in our driveway was not the final image we wanted to have in our heads for the future.  Instead, and through our earlier discussions with the funeral home, we called them to let them know we would be bringing Dylan to them ourselves.  We asked a friend to drive us and we were able to hold Dylan in the car personally and then leave him in someone’s arms at the funeral home (and trust us, this is one of the hardest parts, so picture how you want that to be). 

4)    Think about the timing of your services and make an appointment to finalize arrangements with the funeral home.  We were not emotionally able to make any plans for Dylan’s services on the day he died.  We did, however, talk to the funeral director that morning to make sure Dylan would be ready two days later so we knew immediately what our options were with respect to timing for various services.  We also planned a time to visit the funeral home the following morning to finalize casket and vault selections and to discuss the services.

H)   Memorials for your child -- In addition to the selection of a grave marker, you may have close friends or family who ask you how they can do something in honor of your child.  We have listed a few of those below.

1)    Selection of a grave marker will not need to happen until sometime after your child dies.  We took several months to consider how we wanted Dylan’s grave marker to read and ultimately decided on a heart-shaped grave stone as well as a granite bench (at the foot of his grave).  See photos below

2)    A number of our close friends planted a tree in Dylan’s honor at our house.  They asked us ahead of time and we decided the tree was something that would be long-lasting and would always remind us of Dylan each time we saw it in the yard.

3)    Another friend made a donation to a local YMCA and a brick in remembrance of Dylan was made and placed in a sidewalk at the YMCA.  It says “Dylan May.   Remember Him Well”. 

4)    One friend of ours took a number of dried flowers from Dylan’s memorial service and had them ground into a paste to create beads for a bracelet for Amy.

5)    Although this option requires planning , one of the most meaningful memorials provided to Amy was a necklace that contains Dylan’s thumb-print in silver.  This friend worked with the funeral home and asked them to use a provided kit to take the finger-print while they were preparing Dylan for his visitation.  It would have been much better to make the imprint during his life, but it kept getting “put off”, as things tend to be.  But the necklace is a treasure and one you could create now. 

6) offers its users the ability to create a book of photos and guestbook entries from your child’s Caringbridge site.

7)    Video – we made a video of many of the events in Dylan’s life.  It is a compilation of video clips and photos, set to background music.  We mailed the video to several friends and family so they could remember him also.  We watch the video together as family on the yearly anniversary of his death.  It is, without doubt, tremendously sad.  Yet we can also smile and laugh as we see Dylan smile and laugh.  And best of all, we know that now he is “Dancing With the Angels, Walking in New Life”, as the song says.  His body has been fully restored and he can run and talk and sing.  For that, we are grateful. 


This became a sort of Mantra for us after Dylan died.  It is important to us to continue to acknowledge the vital role that Dylan played in our lives and how precious he was as a person.  We want our friends and family to remember him also, and to “Remember Him Well”. 

After we celebrated Dylan’s life, after his funeral and burial, we returned home with our family and friends.   That’s when the process of remembering began.  Don’t rush yourselves to ‘move on’ as some will suggest. Please know that even though you knew this day would come, you can never really be prepared.  You must grieve.  You may feel like you have already been through all the stages of grief, but they are likely to start over again.  Be kind to yourselves, hold each other tight and move at your own pace through the days ahead.  You CAN go on with life, and your child would want you to.  You will honor your child as you Remember Him Well. 

To quote Mercy Me again, “In Christ, there are no goodbyes.  And in Christ there is no end.  So I hold on to Jesus, with all that I have, to see you again.  To see you again”. 

Dylan, we will see you again, sweet boy.

With Faith, Hope and Love,
Mommy and Daddy


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