Skip to main content

Family Building after the PBD-ZSD Diagnosis


About a week ago I came across a blog "Pregnancy After Loss Support" and a particular post titled, "Dear Courageous Mama Parenting Her Baby Born After a Loss" by Lindsey Henke. This blog and post are written for moms who have experienced miscarriage(s) and/or infant death(s) but it still spoke to me in a very deep way, because although Ethan is still alive there has still been (and continues to be) a loss. A loss of hopes, dreams, and expectations both for Ethan and for us as a family. Our lives, because of PBD-ZSD, are filled with grief, the grief of what we have already lost, what we are currently losing/missing out on, and what we will one day lose. We hate PBD-ZSD!

I feel like a lot of these same thoughts and emotions expressed in Lindsey's post are also experienced by moms (and dads) who add to their family (by birth or adoption) following a diagnosis like ours. PBD-ZSD impacts every major system in Ethan's body. Approximately half of all children born with PBD-ZSD die before their first birthday and the majority do not live past the age of 10 (although some children can live into their teens, 20s, or 30s). Ethan will be 5 years old this summer while we are so grateful that he is still with us, he is developmentally around 9 to 18 months depending on the skill/area — he does not walk independently, is non-verbal, feeding tube dependent, has hearing loss, vision loss, adrenal insufficiency, and seizures. We understand the reality of PBD-ZSD and although we don’t know when the Lord will call him home, unless a supernatural or medical miracle cure take place Ethan will most likely always be our “baby.”

We hope to add to our family through adoption out of foster care, since we are not willing to risk the 1 in 4 chances of having another child with PBD-ZSD. Since a “typically developing” 1 year old has nearly as many, if not more skills than Ethan has now (or may ever have) it doesn't take long for a child to bypass Ethan cognitively and physically. We won’t be able to not feel the loss over things that Ethan can’t do that come so naturally to a future “typically developing ” sibling. Ethan will continue to be completely dependent until he is healed forever in Heaven, while a younger “typically developing” sibling will very quickly become the “big” little sibling, as they grow and develop and surpass Ethan in abilities. We are excited about the joy of getting to parent a “typically developing” child and all the things that come with it that we don’t get to experience as part of parenting a child with complex medical issues/special needs. However, we know with each milestone we will think what Ethan would be like if he could do those things and be sad that he can’t do them.

We have completed the first steps toward what we hope and believe is the way that the Lord is going to add to our family. Jeff and I are officially licensed foster parents, so now we wait. Our name is on the "baby list" at our agency. We are excited and terrified all at the same time. This route of family building is filled with so many unknowns and very little that we can "control." Our licensing worker seems to understand our desire for a "healthy" baby girl -- she has a daughter with special needs herself-- who has at least a good chance of being adoptable. In our state an infant who is born to a mother who has already had children removed from her home by the state automatically enters foster care at birth. The goal for every child is to be returned to a birth parent within 1 year. Sometimes this happens sometimes it doesn't. In IL it can easily take 18 months to 2 years or longer for a parents' parental rights to be terminated even if they NEVER make any progress towards meeting the requirements to be awarded their fitness by the court in order for their child to be returned to their home. My heart breaks that in order for us to have the opportunity to adopt that another family must be "broken" because I do believe that as long as the situation is safe that the best place for a child is to be with biological family (mom, dad, grandparents, aunt/uncle, cousin, etc.) but in many circumstances this is just not possible. 

Would you please consider praying for all the biological parents, children, foster parents, social service agency/workers, and judges that are part of America's foster care system?

  • Pray for safety, wisdom, guidance, love, compassion, support, comfort, and peace. 
  • Pray for biological parents to make the changes needed so that they can be the be the parent(s) that they need to be and for the strength to continue to make good choices. 
  • Pray for children to be be safe and loved while in a foster home. 
  • Pray that they will be able to develop healthy attachments with the adults who care for them and that they will not have to undergo much more significant trauma in their lives. 
  • Pray for foster parents to have the patience, love, wisdom, and strength to be what their foster children need for as long as they need them. 
  • Pray for the children and parents (bio and foster) who are waiting for things to be finalized, whether that be returning to the bio parent or being adopted. 
  • Pray for wisdom and clarity for the social service agencies/workers and judges who make decisions that will impact everyone involved for the rest of their lives.
  • Pray for a way in which you might get involved in supporting those in the foster care system. There are lots of ways to show your support and get involved besides becoming a foster parent yourself, although there is a great need for safe, loving, nurturing foster homes. Check out The Forgotten Initiative to see how you might be able to help.
  • Pray that more churches would embrace caring for orphans -- both here in America and those internationally. Our church and its two sister churches have an orphan care ministry called Open Hearts, Open Homes. You can read more about it here.
Would you also please pray for us as we take this huge step of faith in trying to add to our family? 
  • Pray for patience and wisdom as we wait for God's timing and God's plan for us as a family. This morning as I drove Ethan to school I was listening to the radio. I'm pretty sure the Lord knew what I needed to hear this morning since the message was "God Acts on Our Behalf: One of the most valuable lessons we will ever learn in the Christina life is how to wait upon the Lord." You can listen to it here.
  • Pray that the Lord would guide and direct every step and we would listen, honor, obey, and glorify Him as we take this journey into and through fostering and adopting.
  • Pray for the child that God has for us. Pray for her safety and pray for her biological mother. Pray for every individual that will be involved in this processes. 
  • Pray for protection of our hearts as this is a road that has the potential for great heartache, pain, and suffering.
  • Pray for strength and wisdom as we learn to adapt and adjust to parenting Ethan and another child when we are placed with a foster child. 
  • Pray for Ethan, because his world is going to drastically change if/when he is no longer the only child in our home.
  • Pray for our extended family, friends, and church family, as fostering doesn't just impact us but will also impact all of those around us.
  • Pray that through this new journey of foster care that we are embarking on, as we continue to try to be the parents Ethan needs us to be, as we attempt to be the spouses we need to be to one another, the employee, friend, family member, etc. that we would strife to practice LOVE. This past week's sermon "The Practice of Love: Humble and Gentle" was very convicting and spoke deeply to my soul/spirit. You might also want to check out "The Priority of Love: The Greatest Christian Virtue," and "The Practice of Love: Patient and Kind." The Lord seems to be really using this series of Pastor Ritch's to speak to me.

As always, thank you for your continued love, support, and prayers.






Comments

Popular posts from this blog

So much and so little to write about...

When I started this blog I don't think that I could have imagined a time would come in which months would go by without me writing. However, that is what has happened.

So much has changed over the last almost eight years since Ethan's birth and subsequent diagnosis with PBD-ZSD, yet at the same time so much hasn't. Unlike parents of typically developing children we find ourselves still parenting a child with complex medical needs who's developmental skills range anywhere from 9 to 18 months. Ethan still has PBD-ZSD, and right now his uncontrollable seizures are a major issue. We still fight PBD-ZSD the best we can each day with a basket full of medications and supplements and other medical interventions (feeding tube, cochlear implant, AFOs, etc), numerous therapies, school (which Ethan loves), and prayer. We advocate for him and all children and families impacted by PBD-ZSD and related peroxisomal disorders through our involvement in the Global Foundation for Peroxiso…

#PauseForPBD -- October 5, 2017

October 5th is a special day for our family as we celebrate #PauseForPBD, the annual awareness day for The Global Foundation for Peroxisomal Disorders (GFPD). [Jeff's birthday also happens to be October 5th but he doesn't seem to mind sharing it with #PauseForPBD day.] Our son, Ethan, is 7 years old and is one of less than 200 children, known to the GFPD, living worldwide with Peroxisome Biogenesis Disorder (PBD).  Ethan has a contagious smile and laugh, despite the fact that PBD has caused him to have severe cognitive and physical delays. Peroxisome Biogenesis Disorder (also known as Zellweger Spectrum Disorder), is a rare, genetic condition affecting multiple organ systems in the the body. PBD is generally fatal in childhood. As a parent, it is difficult to express the sense of loneliness and feelings of isolation that enter your life when your child has a rare genetic disease that most people have never heard or and has no cure.
However, #PauseForPBD, is a day that brings o…

Faces of Peroxisomal Biogenesis Disorders

This Saturday we are hosting the first annual Pancakes for PBD benefit.  All the proceeds will go to the Global Foundation for Peroxisomal Disorders to help offset the costs for our family and others like us to attend this summer's 2012 Family Support Conference in Orlando, FL.  We hope that this will become an annual tradition and allow us to help raise awareness and money for peroxisomal biogenesis disorders.

Here are just a few of the faces of PBD.