This spring has been rough, especially when it comes to Ethan's seizures, but I'll be writing more about that in another post. On Friday I had the rare opportunity to spend several hours with another PBD-ZSD mom and I am so thankful for the time we had together, but my heart was also heavy because there are so many other women who I wish could have been with us. Tonight our family enjoyed the beautiful weather at a local park with friends from our small group. One particular conversation from Friday and the events of this evening have me reflecting on perpetual grief and the fact that not a day goes by that I am not mourning in one way or another.
I know that I'm not the only one who has these feelings. Numerous blogs and books have been written about the mourning and grief that accompanies having a child with special needs and/or medical complexities; "How to Cope with Recurring Grief," "The Unique Grief of Special Needs Parents," and "The Perpetual State of Losing," are just a few.
On Friday as I walked and talked and laughed and cried with another mom who "gets it," one of the things that we discussed was the use of the word "terminal" vs "life-limiting" when we talk about PBD-ZSD and how these words that in many ways mean the same thing, can carry very different connotations. Here are just a few possible definitions of these words that I found online.
Terminal illness:
Life- Limiting Condition:
My friend's son is 2 years old. Ethan is 5 years old. My friend frequently uses the term "terminal" when explaining her son's illness to others. While I still use "terminal" at times, more recently, I more frequently describe Ethan's illness as "life limiting with no cure." Why have I changed how I describe Ethan's condition? To be honest, I think it has a lot to do with grief and mourning. Both mine and the general understanding of if within today's society. When most people hear the word terminal they think that there must be an "expiration date" or a given life expectancy. We have been in mourning since we first learned about PBD-ZSD on August 20, 2010 when we held our beautiful 28 day old baby boy and the world collapsed around us. We were told the truth about the disease (50% chance of dying in the first year, etc.) and began to prepare for the worst but hope for the best. Fast forward more than 5 years later, Ethan is still alive. He is severely disabled and although we don't think he is likely to die tomorrow, he still hasn't "beat" PBD-ZSD. He still has a "terminal" disease and his health could deteriorate at any given time without much warning or he could continue to trudge along day by day fighting PBD-ZSD with all his might yet not making a lot of progress. The honest truth is that God is the only one who knows my son's future and while we have looked, we have yet to discover an expiration date stamped anywhere on his little body.
While there is some variation in the definitions of "terminal" and "life-limiting," depending on the source, the overlap is undeniable. Let me be clear --- PBD-ZSD is a terminal life-limiting condition with no known cure. However, PBD-ZSD is a disease that has an extremely wide range of symptoms, so wide in fact that prior to recent medical advancements/discoveries the spectrum was actually thought to be four separate diseases (ZS, NALD, IRD, Heimler Syndrome). The sad reality is that approximately half of all children born with PBD-ZSD have the most severe presentation of the disease and typically die before their first birthday and the majority of children with PBD-ZSD do not survive into their teens. Although there are individuals with PBD-ZSD living into their twenties and thirties with varying degrees of disability, this is not the norm. This is a nasty disease and while there are amazing physicians and scientists working on discovering ways to improve the quality of life for individuals with PBD-ZSD, there is still a lot that is unknown. [For more information about PBD-ZSD please visit the Global Foundation for Peroxisomal Disorders (GFPD).]
I know that I'm not the only one who has these feelings. Numerous blogs and books have been written about the mourning and grief that accompanies having a child with special needs and/or medical complexities; "How to Cope with Recurring Grief," "The Unique Grief of Special Needs Parents," and "The Perpetual State of Losing," are just a few.
On Friday as I walked and talked and laughed and cried with another mom who "gets it," one of the things that we discussed was the use of the word "terminal" vs "life-limiting" when we talk about PBD-ZSD and how these words that in many ways mean the same thing, can carry very different connotations. Here are just a few possible definitions of these words that I found online.
Terminal illness:
- Leading ultimately to death; fatal; approaching or close to death; being in the final stages of a fatal disease; causing death eventually; leading finally to death; having an illness that cannot be cured and that will soon lead to death [Merriam Webster]
- An incurable and irreversible condition caused by injury, disease, or illness that would cause death within a reasonable period of time in accordance with accepted medical standards, and where the application of life-sustaining treatment would serve only to prolong the process of dying. [Duhaime's Law Dictionary]
- Defined in UK Social Security legislation as: "a progressive disease where death as a consequence of that disease can reasonably be expected within 6 months." [The Free Dictionary]
- Conditions for which there is currently no cure and the condition is likely to lead to a child dying prematurely; Any chronic condition (longer than three months) developed in childhood that without major intervention is likely to result in premature death; Recognition and diagnosis of the condition must occur before the age of 16 years. There is no cure for the condition and a likelihood that the child will die prematurely as a young person (25 years or under). [Centre for Palliative Care Research & Education - Children with a Life Limiting Illness]
- Diseases with no reasonable hope of cure that will ultimately be fatal. [Rising National Prevalence of Life-Limiting Conditions in Children in England]
My friend's son is 2 years old. Ethan is 5 years old. My friend frequently uses the term "terminal" when explaining her son's illness to others. While I still use "terminal" at times, more recently, I more frequently describe Ethan's illness as "life limiting with no cure." Why have I changed how I describe Ethan's condition? To be honest, I think it has a lot to do with grief and mourning. Both mine and the general understanding of if within today's society. When most people hear the word terminal they think that there must be an "expiration date" or a given life expectancy. We have been in mourning since we first learned about PBD-ZSD on August 20, 2010 when we held our beautiful 28 day old baby boy and the world collapsed around us. We were told the truth about the disease (50% chance of dying in the first year, etc.) and began to prepare for the worst but hope for the best. Fast forward more than 5 years later, Ethan is still alive. He is severely disabled and although we don't think he is likely to die tomorrow, he still hasn't "beat" PBD-ZSD. He still has a "terminal" disease and his health could deteriorate at any given time without much warning or he could continue to trudge along day by day fighting PBD-ZSD with all his might yet not making a lot of progress. The honest truth is that God is the only one who knows my son's future and while we have looked, we have yet to discover an expiration date stamped anywhere on his little body.
While there is some variation in the definitions of "terminal" and "life-limiting," depending on the source, the overlap is undeniable. Let me be clear --- PBD-ZSD is a terminal life-limiting condition with no known cure. However, PBD-ZSD is a disease that has an extremely wide range of symptoms, so wide in fact that prior to recent medical advancements/discoveries the spectrum was actually thought to be four separate diseases (ZS, NALD, IRD, Heimler Syndrome). The sad reality is that approximately half of all children born with PBD-ZSD have the most severe presentation of the disease and typically die before their first birthday and the majority of children with PBD-ZSD do not survive into their teens. Although there are individuals with PBD-ZSD living into their twenties and thirties with varying degrees of disability, this is not the norm. This is a nasty disease and while there are amazing physicians and scientists working on discovering ways to improve the quality of life for individuals with PBD-ZSD, there is still a lot that is unknown. [For more information about PBD-ZSD please visit the Global Foundation for Peroxisomal Disorders (GFPD).]
Tonight, we met our friends at the park. All of our friends also have children. While a few of the children are older than Ethan, the majority of them are significantly younger than Ethan, but because they are "healthy typically developing" children they live, play, operate in a completely different world and reality than Ethan. I'll just be honest --- it is hard. Silent tears were shed, multiple times, as I watched my friends' children play and the sorrow over what PBD-ZSD has stolen from Ethan and us as a family simply overwhelmed me. I'm not mad that my friends' have healthy kids or that they can run around and play. I grief and mourn because Ethan can't. I grief and mourn everyday for all that Ethan and us as parents are missing out on because of this horrible disease that I hate beyond words. On most days the perpetual grief doesn't bring me to tears, but there are many moments that still, more than 5 years into this, hit me hard. Tonight at the park, was one of those times.
Then, we came home and after Ethan was fed and in bed I sat down at the computer to order new shoes for Ethan, since his new AFOs (braces) won't fit in his current shoes, as well as some of his medications. While I was sitting here my mind couldn't stop thinking about another dear friend who will likely struggle to sleep tonight, as tomorrow morning marks one year since her little girl left her and her husband's arms for the arms of Jesus. The grief that we feel and experience isn't the same as what my friend knows, yet without a miracle, it is almost certain that one day we will know that type of grief all too well. The knowing and the not knowing that comes with this type of diagnosis, at least for me, is another contributing factor in the perpetual grief that is my reality. Another thing that makes the grief associated with our journey with PBD-ZSD, thus far, unlike a grief that I had ever experienced before is that we are active members in a community that mourns together. The GFPD has truly become a second family to us and when they hurt, we hurt. Even after over 5 years, each new loss within our GFPD family stings and reminds us how desperately we need effective treatments and ultimately a cure for this terrible disease. While I may feel more pain because I am part of the GFPD, I can't imagine doing this without them. I am so thankful to know and call these people not only my friends but also my family. I'd like to ask you to please pray for my dear friends and for all families who have experienced the death of a child.
While PBD-ZSD has thrown me into a world of perpetual grief, because of my faith in Christ and what He did, I can still have hope and I can still find joy, because I know that this present life isn't the end.
"Brothers and sisters, we do not want you to be uninformed about those who sleep in death, so that you do not grieve like the rest of mankind, who have no hope. For we believe that Jesus died and rose again, and so we believe that God will bring with Jesus those who have fallen asleep in him. According to the Lord's world, we tell you that we who are still alive, who are left until the coming of the Lord, will certainly not precede those who have fallen asleep. For the Lord himself will come down from heaven, with a loud command, with the voice of the archangel and with the trumpet call of God, and the dead in Christ will rise first. After that, we who are still alive and are left will be caught up together with them in the clouds to meet the Lord in the air. And so we will be with the Lord forever. Therefore encourage one another with these words. ~ 1 Thessalonians 4:13-18 (ESV)
I don't pretend to know the answers to all the questions that I have, especially those dealing with why pain and suffering are allowed to occur and seem to be so abundant in this world and what Heaven will really be like. I freely admit there is so much that I don't understand. Yet, I haven't given up my faith in the one who loved me so much that he would die for me.
"But God shows his love for us in that while we were still sinners, Christ died for us."
~ Romans 5:8 (ESV)
"For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life."
~ John 3:16 (ESV)
"Now faith is the assurance of things hoped for, the conviction of things not seen."
~ Hebrews 11:1 (ESV)
Shortly after Ethan's diagnosis a friend sent me "Holding onto Hope" and "The One Year Book of Hope," written by Nancy Guthrie. Nancy and her husband had two children die from PBD-ZSD. More recently I began to explore books like "Held: Learning to Live in God's Grip" and "Get Your Joy Back" alongside other Christian women who have children with special needs. The next book we are going to be reading, beginning in June, is "Anxious: Choosing Faith in a World of Worry."
I also listen to a lot of Christian music. I find myself singing along with songs like "Where I Belong," by Building 429, "Bigger Than the Odds," by Matt Vollmar, "Lift Me Up" by The Afters, "Before the Morning," by Josh Wilson and so many others, frequently with tears streaming down my face, as I reflect on how fleeting this life is and that eternity awaits us.
Tonight I came across "30 Prayers for Special-Needs Parents," and my plan is to print them out this week so that I can focus on the scriptures and prayers in this resource over the next month.
I also draw strength from "reminders" like these from Proverbs 31 Ministries:
I also draw strength from "reminders" like these from Proverbs 31 Ministries:
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| I want to live a life that reflects this. I hope you do too. |
Prayer Request
Please pray for all who are hurting and need to feel and experience the love, comfort, strength, peace, hope, and joy that only God can provide. Please pray for guidance about how God might use you, as the "hands and feet of Jesus" to minister to those around you who are hurting.
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